Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

Here is the link to Michael Mallinson's episode: Episode 51

Here is the link to Dr. Napier's interview where she discusses research she is doing: Episode 187

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

Here is the link to Michael Mallinson's episode: Episode 51

Here is the link to Dr. Napier's interview where she discusses research she is doing: Episode 187

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

Here is the link to Michael Mallinson's episode: Episode 51

Here is the link to Dr. Napier's interview where she discusses research she is doing: Episode 187

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here is a link to Dr. Napier's lab page.

To make a donation to Dr. Napier's Lab and fund her research, click here.

Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the YouTube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Full Workout Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness Alex's Stretching Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. Khan

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness Alex's AS Diagnosis Video

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness

Alex Levine - How I Improved My Flexibility and Strength With Inflammatory Arthritis.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness

Alex Levine - Dealing with Ankylosing Spondylitis Fatigue

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Last week we lost another member of the AS community. Here is a link to Rachel Tew's profile from The Faces of AS Website.

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness

Alex Levine - Getting Started

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Interview with Alex Levine on exercise - Link

Alex Levine YouTube episode - Link

Yoga for AS episode - Link

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

About Alexander Levine and Alex Levine Fitness LLC

Alexander Levine owns and operates a virtual personal training business, Alex Levine Fitness LLC, which specializes in 1 on 1 personal training for those with Ankylosing Spondylitis and Axial Spondyloarthritis around the world. He is a certified personal trainer, fitness nutrition specialist, and senior fitness specialist through the National Academy of Sports Medicine. He also holds a Master’s Degree in Sports Leadership from Northeastern University.

 Alex is on Instagram @AlexLevineFitness and YouTube @AlexLevineFitness sharing his journey and health and fitness tips for people living with Ankylosing Spondylitis. To learn more about his virtual personal training business check out his website alexlevinefitness.com.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I have discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Interview with Alex Levine on exercise - Link

Interview with Jennifer Visscher - Link

Yoga for AS episode - Link

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Interview with Alex Levine on exercise - Link

Interview with Jennifer Visscher - Link

Yoga for AS episode - Link

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Hedy's profile

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

About Alexander Levine and Alex Levine Fitness LLC

Alexander Levine owns and operates a virtual personal training business, Alex Levine Fitness LLC, which specializes in 1 on 1 personal training for those with Ankylosing Spondylitis and Axial Spondyloarthritis around the world. He is a certified personal trainer, fitness nutrition specialist, and senior fitness specialist through the National Academy of Sports Medicine. He also holds a Master’s Degree in Sports Leadership from Northeastern University.

 Alex is on Instagram @AlexLevineFitness and YouTube @AlexLevineFitness sharing his journey and health and fitness tips for people living with Ankylosing Spondylitis. To learn more about his virtual personal training business check out his website alexlevinefitness.com.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I have discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

A few weeks ago we lost another member of the AS community. Here is a link to Shawna's profile from The Faces of AS Website.

Here are the links to the Youtube channels for:

Yoga for AS

Alex Levine, Fitness

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Here is the text from Cookie's February 9th email:

Today I joined Walk Your AS Off! I miss being a part of something. I miss working towards a goal, hell who am I kidding I miss being inspired to even have a goal!

I have wanted to participate for a long time, but life and I got in the way. Plus, I didn’t have it in me to be committed to anything or anyone and I damn sure didn’t want to let my team or anyone down.

I mean honestly how much of a difference would my 1000 plus steps a month make? Well? A lot to be honest not only to myself but to my team and to the goal of reaching Mars. One step at a time, all of us working together.

You see I have spent most my life missing out because I didn’t think I would do it perfectly or I would be an embarrassment or let people down especially myself. I am never going to run a marathon or hell even crawl one. But I can be a part of something and enjoy being involved and excited about goals being met! No matter how big or small they maybe, they still matter. My only goal at this moment is just to remember to keep up with my steps and hopefully I will be able to make the goals of going one step further each day.

What I love most about Walk Your AS Off is that for one it is free! Who doesn’t love “free!” I am not pressured to donate any money or time unless I want to. I can join or stop at any time! 

I love the fact that I have NO GOAL TO SET OR MAKE! I love the fact that I am the only one who is setting the goal for myself and that no one knows that goal but me! I am under no obligation I can do it if I want to or not! I don’t have to be a walker, runner or in any certain type of shape. I just got to be ME! And I can do that! AND the greatest thing is getting to meet new people and hopefully make lasting friendships! I know I have.

I think it is about 2000 steps to make a mile. I figured with any luck I will manage that in one week! Heck maybe even 2023 steps! I have always been a goal maker, which set me up for failure or not even giving myself a chance to try. Because I wanted to be perfect or the best at everything I did. I missed out on a lot. Ankylosing Spondylitis has taken a lot away from me, more than you will ever know but one thing I have gained with this disease is learning to have compassion for myself. I try to remind myself my best is my best. Period. It may not look like anyone else’s best or what others think it should look like, but I know I am doing the best that I can and that is enough for me.

So, today I begin tracking my steps! I am really curious to see what they are, to be honest I am excited about doing this. I joined The Blue Apple team because I do not have it in me to be a team captain plus I wanted to be a part of a team, a community. Working together to encourage each other and reassure each other that our best is our best and together we can do this!

I was dreading signing up because I struggle with technology, but it was SO SIMPLE!!!!!!!!!!!! My username is Cookie! Original right! Oh, and I asked if my family could use ONE EMAIL and ONE username to give me their steps because they do not want to have to remember to log in and do it. AND THEY CAN! So, I have a few members who are going to text me every Sunday (I think) their steps and then I will add them to the site. (Damn almost sounds like a team captain)

I hope you will consider joining us in making our goal to Mars and raising awareness! Thank you for your time. I would love to publicly thank Jenna Dye Visscher for her vision and her determination to create such a wonderful community and project for all of us. Please check out the link below!

Hope to see you soon!

Cookie

This week's episode is based upon an email from Cookie about Walk Your AS Off. This a fun way for you to help spread awareness of Axial Spondyloarthritis.

Here is the text from Cookie's February 9th email:

Today I joined Walk Your AS Off! I miss being a part of something. I miss working towards a goal, hell who am I kidding I miss being inspired to even have a goal!

I have wanted to participate for a long time, but life and I got in the way. Plus, I didn’t have it in me to be committed to anything or anyone and I damn sure didn’t want to let my team or anyone down.

I mean honestly how much of a difference would my 1000 plus steps a month make? Well? A lot to be honest not only to myself but to my team and to the goal of reaching Mars. One step at a time, all of us working together.

You see I have spent most my life missing out because I didn’t think I would do it perfectly or I would be an embarrassment or let people down especially myself. I am never going to run a marathon or hell even crawl one. But I can be a part of something and enjoy being involved and excited about goals being met! No matter how big or small they maybe, they still matter. My only goal at this moment is just to remember to keep up with my steps and hopefully I will be able to make the goals of going one step further each day.

What I love most about Walk Your AS Off is that for one it is free! Who doesn’t love “free!” I am not pressured to donate any money or time unless I want to. I can join or stop at any time! 

I love the fact that I have NO GOAL TO SET OR MAKE! I love the fact that I am the only one who is setting the goal for myself and that no one knows that goal but me! I am under no obligation I can do it if I want to or not! I don’t have to be a walker, runner or in any certain type of shape. I just got to be ME! And I can do that! AND the greatest thing is getting to meet new people and hopefully make lasting friendships! I know I have.

I think it is about 2000 steps to make a mile. I figured with any luck I will manage that in one week! Heck maybe even 2023 steps! I have always been a goal maker, which set me up for failure or not even giving myself a chance to try. Because I wanted to be perfect or the best at everything I did. I missed out on a lot. Ankylosing Spondylitis has taken a lot away from me, more than you will ever know but one thing I have gained with this disease is learning to have compassion for myself. I try to remind myself my best is my best. Period. It may not look like anyone else’s best or what others think it should look like, but I know I am doing the best that I can and that is enough for me.

So, today I begin tracking my steps! I am really curious to see what they are, to be honest I am excited about doing this. I joined The Blue Apple team because I do not have it in me to be a team captain plus I wanted to be a part of a team, a community. Working together to encourage each other and reassure each other that our best is our best and together we can do this!

I was dreading signing up because I struggle with technology, but it was SO SIMPLE!!!!!!!!!!!! My username is Cookie! Original right! Oh, and I asked if my family could use ONE EMAIL and ONE username to give me their steps because they do not want to have to remember to log in and do it. AND THEY CAN! So, I have a few members who are going to text me every Sunday (I think) their steps and then I will add them to the site. (Damn almost sounds like a team captain)

I hope you will consider joining us in making our goal to Mars and raising awareness! Thank you for your time. I would love to publicly thank Jenna Dye Visscher for her vision and her determination to create such a wonderful community and project for all of us. Please check out the link below!

Hope to see you soon!

Cookie

https://walkyourasoff.com/

**********************************************************************

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I have discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Walk AS One’s main goal is to encourage and motivate those with Ankylosing Spondylitis to be more active through walking and regular exercise. Walking is known to have great health benefits, especially for those with AS/AxSpa. 

Each May, Walk AS One holds their month-long virtual walk event Walk Your AS Off during Arthritis Awareness Month. Walkers from all corners of the globe come together as a community to track and log steps as teams and individuals - a goal to collectively take over 316 Billion steps (or the amount of steps it would take to reach Mars). This is a far reaching goal that will take years to accomplish and no contribution is too small. Each step counts from all levels and there is no cost to participate.

Jennifer invites you to join her team, The Blue Apples, or form your own team. You may add your steps just in May or year round but we always make extra effort during awareness month and for World AS Day that happens the first Saturday of May. 

Jennifer’s passion is growing Walk AS One but she is also an accomplished artist. Her work can be found at JenniferVisscher.com

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I have discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

The three people mentioned that we lost are:

0005 Jackie

0034 Nicole

0100 John

Please read Jackie, Nicole, and John's profile.

In this episode I discuss an article from the website My Spondylitis Team. It looks at What You Can't See On Imaging. Here is a link to the article.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Steff Di Pardo episode

Lisa Marie Basile episode

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Also, here is a link to Episode 162 about 8 Things A Woman Needs To Know.

The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Also in this episode, I refer to an article about finding support and here is the link to the article.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I review an article about fatigue and what some others do to offset the fatigue they get. Here is the link to the article.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I review an article about Conventional DMARDS vs Biologic DMARDS for AS. Here is the link to the article.

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Weighted Blanket - https://amzn.to/36RCdi7

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Episode with Andrew Boss:

Andrew Boss Pt 1

Andrew Boss Pt 2

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Episode with Andrew Boss:

Andrew Boss Pt 1

Andrew Boss Pt 2

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Here are some links to Amazon showing some of the items I discussed.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Andrew Boss Pt 1

Andrew Boss Pt 2

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Here are some links to Amazon products that may help..

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Here are some links to Amazon products that may help..

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items.

Here are some links to Amazon showing some of the items I discussed.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Below are affiliate links. Buying any item through a link may result in the show getting a fee from the vendor. It will not change your purchase price.

Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/

Here are some links to Amazon showing some of the items I discussed.

Uberlube - https://amzn.to/3i604N2

Here is the Bean Bag neck warmer https://amzn.to/3uN6mcg

Biofreeze - https://amzn.to/33gygBS

Cane - https://amzn.to/3uN9fts

Heating Pad - https://amzn.to/3Bjd5vz

Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScA

All My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Episode on Iritis

www.spondypodcast.com/48

But Women Don't Get AS.

www.spondypodcast.com/21

Here is the free software = https://www.libreoffice.org/

Steff DiPardo - Ankylosing Spondylitis group

Ali's Instagram Page instagram.com/anky_as_spanky

Lisa was a past guest on the show, I hope you enjoy that episode too.

The things discussed in here are not to be interpreted as medical advice. Please consult your doctor.

Nifty Grabber - https://amzn.to/3jUhFrY

Reading/Husband Pillow - https://amzn.to/2VO7xZV

Cooling Patch - https://amzn.to/3yIK5eF

Just Breath by Steff Di Pardo - https://amzn.to/2VYUSTG

Links to Amazon are affiliate links and the show may earn a commission on any products purchased.

Lisa Marie Basile - www.spondypodcast.com/72

Steff Di Pardo - www.spondypodcast.com/76

Nifty Grabber - https://amzn.to/3jUhFrY

Reading/Husband Pillow - https://amzn.to/2VO7xZV

Cooling Patch - https://amzn.to/3yIK5eF

Just Breath by Steff Di Pardo - https://amzn.to/2VYUSTG

The Magical Writing Grimoire: Use the Word as Your Wand for Magic, Manifestation & Ritual by Lisa Marie Basile - https://amzn.to/3yQEVxb

Links to Amazon are affiliate links and the show may earn a commission on any products purchased.

Here is the link to the article.

Past Articles:

29 Things about AS you should understand: www.spondypodcast.com/4

10 Things Not To Say To Someone With AS: www.spondypodcast.com/13

Pet Peeves Heard About AS: www.spondypodcast.com/29

The information for this was taken from the following website:

https://www.myspondylitisteam.com/resources/how-do-biologics-treat-spondyloarthritis

Chronic Insights - https://chronicinsights.com

Items mentioned:

Episode Based off this article:

https://www.healthline.com/health/adjusting-to-chronic-illness#7.-I-asked-for-(and-accepted!)-help

Chronic Insights - https://chronicinsights.com

Spondylitis Association of America - https://spondylitis.org

Walk Your AS Off - https://walkyourasoff.com

Is technology helping or harming? What do you think? Go to www.spondypodcast.com and connect with me. Let me know what is helping you.

I mention wrong email in show. Oops. Its jayson@spondypodcast.com

In this I also mention episode 39 (www.spondypodcast.com/39) which discusses 7 Steps to Prepare for a Rheumatologist Visit. I also mention episode 43 (www.spondypodcast.com/43) with James Allen who developed a pain tracking app called Chronic Insights.

https://www.spondylitis.org/spondylitis-plus/standing-tall-for-women-with-axial-spondyloarthritis/

I mention these past episodes:

Interview with James Allen from Chronic Insights app

www.spondypodcast.com/43

Interview with Vinnie Tortorich - Eating Right

www.spondypodcast.com/3

https://www.arthritis.org/health-wellness/treatment-plan/disease-management/treatment-options-for-axial-spondyloarthritis

http://www.healthline.com/health/ankylosing-spondylitis-natural-treatment#traditional-treatments

In this I talk with Callie about how she helps people and her own issues with a chronic illness and how it affected her life.

www.riverandquill.com

https://ankylosingspondylitisnews.com/2020/10/12/ankylosing-spondylitis-pain-linked-with-depression-anxiety-stress-study-finds/?cn-reloaded=1

Healthline article - https://www.healthline.com/health/beyond-back-pain-with-as/exercise-routine

Yoga for AS (YouTube) - https://www.youtube.com/user/jboder1

Beginning Meditation (YouTube) - https://www.youtube.com/watch?v=inpok4MKVLM

#weeklyexerciseforas

www.disabilityforms.com

https://www.youtube.com/user/ginsbergssd

www.4SocialSecuritydisability.com

www.meetalisting.com

www.gridrules.net

http://ssdradio.com

Steff DiPardo’s writings on ankylosingspondylitis.net

https://ankylosingspondylitis.net/author/stephaniedipardo/?via=homepage-recents

Just Breath by Steff Di Pardo - https://amzn.to/3p7jfbw

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Well Doctor Yu, I really appreciate you showing up on the show today. It's great to have an actual rheumatologist that's also dealing with an autoimmune disease. So welcome and how are you today?

Dr. Micah Yu:

I'm doing well thank you. And thank you for bringing me on your pocket. I really appreciate the fact that you have Ankylosing Spondylitis. You're really helping the masses out there.

Jayson:

It's fun to do. And I learned something new every day after almost 40 years of dealing with this. I still realize I don't know anything. So it's just neat to keep learning. So, you have such an interesting position, not only are you a rheumatologist, but you're working on your Integrative Health Fellowship right now. Could you explain a little bit to the listeners’, kind of what Integrative Health is or Integrative Medicine is?

Dr. Micah Yu:

Yeah, so I'm definitely doing several things. So I'm certified in Lifestyle Medicine with a new specialty. Now, it's from the American College of Lifestyle Medicine that focuses on six pillars. It focuses on nutrition, exercise, sleep, stress, emotional well being and tobacco and risky substance cesation, but also taking courses in Functional Medicine right now as well. And I'm doing my second fellowship in Integrative Medicine at the University of Arizona Andrew Weilprogram. So that program is what I'm most excited about. So that program not only goes over nutrition, but also goes over different complementary or alternative modalities such as traditional Chinese medicine, Reiki, ayurvedic, supplements, manual medicine, mind body medicine, meditation, and so forth. Yeah, so those are the things that it covers.

Jayson:

So in my past episodes of the shows, I've done episodes where we've discussed, you know, working with or finding a rheumatologist using meditation, in some cases, yoga, all these different things, and what you're really doing is kind of wrapping it all up into one specialty.

Dr. Micah Yu:

Yeah, that's, that's my goal. I really want to combine the world of traditional allopathic medicine with complementary medicine. I think that's where the most benefit life of patients and that's what I want as a rheumatologist, and that's what my patients are speaking as well.

Jayson:

So as a rheumatologist, when you're working with patients, I get a lot of listeners as an example, that say, I can't get my rheumatologist to believe that I think I have as they want to keep telling me I have something else. I always wonder, do you continue to be your advocate for what you think you may have? Or do you follow the course of path that the rheumatologist is going or if it's just a head, but do you look for a new rheumatologist? I never know what the correct way to look at it is.

Dr. Micah Yu:

Yeah, so that's a very tricky question. Rheumatology is probably one of the most difficult fields in medicine to practice and there are still many questions, still nebulous answers as well. So I would say as a patient, if you feel like you have Ankylosing Spondylitis, and you're not getting the answer from your doctor, I would seek out a second opinion from another rheumatologist in the area or virtually as well, because sometimes the rheumatologist can have three rheumatology in the room and all three rheumatologist will have a different opinion. So it's very important in rheumatology to get that second opinion, to see if it matches up with the first opinion.

Jayson:

And what about things like maybe you haven't been diagnosed yet? I would think that x rays and MRIs can be very important to at least at a minimum set a baseline to say here's what my spine here's what my hips, here's what everything looks like, how does it look like six months a year, however far in the future?

Dr. Micah...]]>Jayson:

Well Doctor Yu, I really appreciate you showing up on the show today. It's great to have an actual rheumatologist that's also dealing with an autoimmune disease. So welcome and how are you today?

Dr. Micah Yu:

I'm doing well thank you. And thank you for bringing me on your pocket. I really appreciate the fact that you have Ankylosing Spondylitis. You're really helping the masses out there.

Jayson:

It's fun to do. And I learned something new every day after almost 40 years of dealing with this. I still realize I don't know anything. So it's just neat to keep learning. So, you have such an interesting position, not only are you a rheumatologist, but you're working on your Integrative Health Fellowship right now. Could you explain a little bit to the listeners’, kind of what Integrative Health is or Integrative Medicine is?

Dr. Micah Yu:

Yeah, so I'm definitely doing several things. So I'm certified in Lifestyle Medicine with a new specialty. Now, it's from the American College of Lifestyle Medicine that focuses on six pillars. It focuses on nutrition, exercise, sleep, stress, emotional well being and tobacco and risky substance cesation, but also taking courses in Functional Medicine right now as well. And I'm doing my second fellowship in Integrative Medicine at the University of Arizona Andrew Weilprogram. So that program is what I'm most excited about. So that program not only goes over nutrition, but also goes over different complementary or alternative modalities such as traditional Chinese medicine, Reiki, ayurvedic, supplements, manual medicine, mind body medicine, meditation, and so forth. Yeah, so those are the things that it covers.

Jayson:

So in my past episodes of the shows, I've done episodes where we've discussed, you know, working with or finding a rheumatologist using meditation, in some cases, yoga, all these different things, and what you're really doing is kind of wrapping it all up into one specialty.

Dr. Micah Yu:

Yeah, that's, that's my goal. I really want to combine the world of traditional allopathic medicine with complementary medicine. I think that's where the most benefit life of patients and that's what I want as a rheumatologist, and that's what my patients are speaking as well.

Jayson:

So as a rheumatologist, when you're working with patients, I get a lot of listeners as an example, that say, I can't get my rheumatologist to believe that I think I have as they want to keep telling me I have something else. I always wonder, do you continue to be your advocate for what you think you may have? Or do you follow the course of path that the rheumatologist is going or if it's just a head, but do you look for a new rheumatologist? I never know what the correct way to look at it is.

Dr. Micah Yu:

Yeah, so that's a very tricky question. Rheumatology is probably one of the most difficult fields in medicine to practice and there are still many questions, still nebulous answers as well. So I would say as a patient, if you feel like you have Ankylosing Spondylitis, and you're not getting the answer from your doctor, I would seek out a second opinion from another rheumatologist in the area or virtually as well, because sometimes the rheumatologist can have three rheumatology in the room and all three rheumatologist will have a different opinion. So it's very important in rheumatology to get that second opinion, to see if it matches up with the first opinion.

Jayson:

And what about things like maybe you haven't been diagnosed yet? I would think that x rays and MRIs can be very important to at least at a minimum set a baseline to say here's what my spine here's what my hips, here's what everything looks like, how does it look like six months a year, however far in the future?

Dr. Micah Yu:

Right, so actually, the imaging are definitely very, very important, especially if the rheumatologists really suspect Ankylosing Spondylitis. So actually it is the first line imaging and all patients that come in with suspected ankylosing spondylitis. If that doesn't show anything, and the patient still is symptomatic, then MRI of the pelvis is second line you do want to see hopefully stay on the MRI and still, however, if you don't see any x ray or MRI changes, that doesn't rule out Ankylosing Spondylitis. There is a patient population that has a diagnosis of non-radiographic axial spondylorapathy, which pretty much means you have Ankylosing Spondylitis without the radiographic changes.

Jayson:

It's very interestinga and I did an episode not too long ago about how maybe this disease has been looked at a little bit wrong and that instead of using non radiographic and using Ankylosing Spondylitis, we might say that everybody just has axial spondyloarthritis and they move along a path from non radiographic to the AS, works on a spectrum. And I thought that was kind of an interesting take on it.

Dr. Micah Yu:

Yeah, you know, both diagnoses are pretty much the same to me. They're both the same management. It's really a matter of whether you see inflammation on that film or not. And it's really important for the rheumatologist and when you do suspect, ankylosing spondylitis and the radiologist doesn't say anything about the edits or any changes on there that the rheumatologist hopefully does talk to the radiologist and really confirm that imaging findings because there have been times where there has been nothing found on the radiologist repo. When I reviewed with the radiologists they change their opinion.

Jayson:

Okay, so it's very important that everybody put their heads together and work through, there's a lot of pain present in the patient.

Dr. Micah Yu:

Right, exactly. Especially if the rheumatologist doesn't really send much info to the radiologist every other sometimes doesn't know what to look for. So they might overlook it. 

Jayson:

Interesting. Now with that we're in 2020, we're actually coming to an end here, and you have your practice. But what many patients have experienced in 2020 is working virtually with a doctor, you know, just through zoom or whatever, FaceTime through the phone, whatever way they work, you are in California, but you're also licensed in eight other states besides California, could you let those most of the listeners know that you are a possibility they could talk to?

Dr. Micah Yu:

Yeah, so I am currently licensed not only in California, but just going from west to east, I'm licensed in Arizona, Colorado, Texas, Illinois, Michigan, Ohio, New Jersey, and Florida. And if any of your listeners want to see me virtually, and they're not looking at any of the states, I am more than happy to get another state license, it just takes time. And it's so important for me to get licensed in other states and I the reason why I'm doing this is because there's not many rheumatologist practice the way I do and there's a lot of patients out there that are seeking a rheumatologist just like me, and I really want to help those patients out there because I'm a patient myself, and I understand how important it is to find a rheumatologist that really fits your style.

Jayson:

Yes, we really didn't cover that you are dealing with your own autoimmune disease. So you're not only aware of how you feel dealing with it, it brings a little bit more, I would think empathy towards people that are coming in to see you

Dr. Micah Yu:

Correct, yeah, so I can definitely go over my story, which has led me down this path into integrating complimentary with traditional rheumatology. So during high school, I was a football player, and I wanted to lose weight and gain strength as well. So I went on the Atkins diet, a high very high protein diet of about 150 to 200 grams of protein a day when I was only weigh about 150 milligrams, 150 pounds. I mean, so I went into that for a couple of weeks to column one and got a diagnosis of gout. I woke up with a really painful, swollen toenail and I got diagnosed with gout and over the years, my pain really transformed to another form of arthritis and I want you to put rheumatologist during medical school and they really couldn't really diagnose me. Typical story, right? You go from doctor to doctor and, and rheumatology and they don't have an answer for you. All my labs are negative, my HLA-B27 was negative, but my inflammation markers are elevated by ESR and C reactive protein. So during my residency, after medical school, I want you to remember I told you the department and my program at Loma Linda University and the inital diagnosi spondyloarthritis. Now my spondyloarthritis is a variation of Ankylosing Spondylitis, I don't have the lower back pain, but I do have to enthesitisis. So enthesitis is basically inflammation of this insertion point of the tendon and bone bone. I do have that, I do have joint pain in the hands of the knees and all these other places. So I have several diagnose gout, I actually got diagnosed pseudo gout and I got diagnosed with periphrial spondyloarthritis. But periphrial spondyloathritis is the main autoimmune condition that I have. And if you want me to dig into my story, I don't take medications. Actually, I control it with diet and lifestyle. And would you like me to go over that as well?

Jayson:

Sure, we get a lot of listeners are nervous of taking the medications. I personally take Cosentyx, I've been taking it for several years. And it's been phenomenal for me. But the Ankylosing Spondylitis, the autoimmune disease journey is different for everybody. And so for your case, you're controlling with diet, and there are so many people that are interested in that. I'd love to hear how you do that in conjunction with your wife, right?

Dr. Micah Yu:

Yeah. So yeah, so before I started my fellowship, you know, I went on a whole food diet, and within a couple months, my joint pain went away. My C reactive protein, which has been elevated for over 10 years actually went negative for the first time I was pleasantly surprised. The reason why I want to whole plant based diet is because my wife is also a doctor, and she's part of the American College of Lifestyle Medicine. And I read College of lifestyle medicine, and they promote whole plant based  diet, so I figured I'd give it a shot. It's anti-inflammatory diet. There's many anti-inflammatory diets on the market. That is a paleo diet is a Mediterranean diet. And now there's a whole plant based diet as well. And it's been it's worked for me, it doesn't work for everybody. Every individual with ankylosing spondylitis and autoimmune disease is different. So I'm very balanced in that aspect. And not everybody will control their autoimmune disease with diet alone. I'm one of the lucky ones that can. I do take medication for gout. I was off my medication for my gout for over a year. But I noticed that my pain did come back or actually over two years I noticed my pain did come back during times of stress and ignores those working to get them to the spondyloarthritis so I don't take any medication for much on those various I do just fine unless I'm working overnight and I'm very stressed, it does come back. But my pain that was about 10% of what it was before.

Jayson:

Wow, in this, I think is a great time to talk with your wife. As a doctor, as you said, you guys have created a book together and ebook. And again, a lot of listeners and a lot of people in the forum's all want to talk about different eating styles and what works, and I think you're correct. Not everybody can do Keto and get the same results. Not everybody can do Paleo and get the same results. But it's worth trying it to find out, oh, this did work for me or it didn't work for me. It's part of that journey you go on and with that you guys did an ebook. I'll have a link in the show notes to Dr. Yu’s website where you can actually purchase the E book. And it's all on plant based cooking, if I understand?

Dr. Micah Yu:

Correct, yeah, so my wife is avid cooker. She makes great recipes. We actually have recipes on our website. But my own personal website, I do have that book and that basically goes over ways to get started on a whole food plant based diet. The whole food plant based diet has helped many different conditions not only on disease, my wife is assigned medicine doctor, she's actually seen the reverse of hypertension and diabetes has actually been able to get patients off of their medications for both conditions and sometimes she has even reversed patient’s cholesterol as well. So it's an auto-inflammatory diet. Inflammation is the one of the root of many diseases. That's why it can work for many conditions and that's why we do live a whole food, plant based lifestyle at home.

Jayson:

If you are thinking about getting the book, I'll also have a link to Dr. Yu’s YouTube channel, where he's got four videos, it's relatively new channel, he's got four videos cooking for different plant based foods. And one of them is a dark chocolate avocado pudding, which looks great. And so this will give you an idea of, of kind of how you can incorporate a plant based diet if that's what you want to do into your treatment plan for your Ankylosing Spondylitis.

Dr. Micah Yu:

Yeah, thank you so much for mentioning that, Jason. So yeah, we do have a YouTube channel. It's a cooking channel, but we haven't updated yet. But we're going to actually start that YouTube channel back up in the next couple months. So stay tuned for that, there is the chocolate avocado pudding recipes, there's currently no refined sugar in that. So a whole food plant based diet is pretty much a vegan diet. Without processed food, it can be quite challenging for someone that can eat regularly, it is a journey for me, I was a big meat eater in the past as well. But because of my improvement in pain, I basically cut the meat out of my diet,

Jayson:

That would be a hard one for me, I'm not going to lie. Yeah, I'm not going to lie, that would be a very challenging one for me. Brussel sprouts with a steak all over it, but I do prefer lean meats, I do hunt. So a lot of what I eat is a wild game, which generally tends to run on the very lean side, I eat very little in the way of, you know, store bought before or anything of that nature. So there's studies out there say, hey, that's not bad for you go ahead and ingest it. Your body knows how to handle it and there are other studies that say don't do it. Yeah, so that’s kind of all over the place. So you got to really work with somebody like yourself, set a course try it. If a plant-based diet doesn't work for you, you know, your rheumatologist if it's Dr Yu or anyone should then say, Okay, you've tried it. Let's try this. And it's really a process of elimination to find out what's the right one and and you need a doctor that's going to help guide you through that. And that's, that's why I think that integrative medicine and the functional medicine that you are incorporating with rheumatology, I think that's just so important,

Dr. Micah Yu:

Right, yeah that's why I'm doing what I'm doing. Because there I was looking for a rheumatologist like this as a patient. That's why I'm going to become that rheumatologist for other patients as well. You know, as a physician, we don't get trained on nutrition; the nutrition training that we get during medical school is only 10 hours at most. And it's things like vitamin C deficiency, things that we don't really see, on a day-to-day basis. Things aren't that practical. So for me, it's really important to basically go on that journey and find out what is the evidence in nutrition, what works for patients, how to talk to patients and find a balance in that your rheumatologist is most likely not going to be well versed in these diets and how they can help with inflammation. That's why I'm doing what I'm doing out there. And you know, even if you don't decide to go on homeopathy said it's important to incorporate vegetables, the fiber is so important for you for anti-inflammatory effect. So even if you decide not to go whole plant based, you can at least incorporate more vegetables, and that's where some of our recipes can come in to give you ideas on how to do that.

Jayson:

Oh, yeah, I'm not always the best at eating the vegetables. I should but I had a friend turned me on to putting cauliflower on a baking sheet putting some hot sauce on it and putting it under the broiler. Dr. Yu if you would have told me 10 years ago I was going to do that I would have told you to get lost. It's fantastic. It's absolutely fantastic and it's so much better than sitting down with a bag of chips.

Dr. Micah Yu:

Oh yeah. You just need to learn how to cook, what recipes and make it taste good and that's all you really need. You know, before I went on this journey, I hated eating vegetables myself, I didn’t like the taste of it. But once you find variety and experiment with cooking, it really is fun and tasty.

Jayson:

Now one thing I want to cover with you so that the listeners understand is, well you're licensed in all these states and you can help you don't take any type of insurances. It's going to be a ,you work with each patient on a basis of here's what your set hourly or per visit rate is. So people need to understand that up front. But that's what allows you to work in all these different states with a much easier process, correct?

Dr. Micah Yu:

Yeah, so I don't take insurance. The only insurance I take is Medicare. The reason I don't take insurance, because the model of quality of care that I'm giving doesn't support a insurance model. You know, when you see a rheumatologist and insurance model, the most you get maybe 15 - 20 minutes at a visit, or maybe half an hour for a new fit. For me, that's not enough, I spend at least an hour on a new visit. And I spend half an hour on the first visit. And in the new visit, not only do I go over diagnosis; I go over your medications. I also talk about your lifestyle and potential alternative ways to help with your ankylosing spondylitis and autoimmune disease. So it's a very, very comprehensive visit, and I answer questions I take time with you. And even if we run out of time over an hour, I always give direct access to my patients where they can send information through email; you can contact me through social media in order to get your answers. So I use my social media platform to educate the public on how important lifestyle and integrative medicine is to diseases in general.

Jayson:

So I'm in Michigan, let's say I decided to work with you doctor. You can write prescriptions and in all the different states?

Dr. Micah Yu:

Correct, I can write prescriptions in any state I can write loud, I can order x rays. So all medications, labs and x rays go through the insurance. The only time you're out of network is when we as a doctor in our visit, I can be your primary rheumatologist I can also be your second opinion. I have multiple patients where they have the primary rheumatologist and under second opinion and they follow the regularly because the rheumatologist is really the seeing them every time just not answering questions, just renewing the medications every time and they're not well versed in other aspects of integrative care. And that's where...]]>60f57c10-66f6-4b6e-a95d-c5e85a85941cSun, 25 Oct 2020 09:00:00 -040024:23falsefull7373Lisa Marie Basile - Author and Ankylosing Spondylitis AdvocateJayson:

Lisa, welcome to the show I just gave the intro about you and it's so rich and varied and your background is so immense. But on top of all those interesting and fantastic, great things that you've accomplished, you also have Ankylosing Spondylitis. How did you come across the discovery of Ankylosing Spondylitis? And is it something that ran in your family?

Lisa

Yes, well thank you so much for having me. I really appreciate being here. I was diagnosed in 2017. But I've been having symptoms for about a decade. And it does run in my family. My father has it, my aunt, his sister has it and we think that my grandma, who has passed now, had it. She probably had the worst of all of us, sort of in that, I think it really debilitated her. And then I probably have it worse than my aunt and my father. So it's definitely been a journey and just talking about it and, you know, researching, it's something I'm really passionate about. 

Jayson:

Well, of course, it you've got such a varied background in being published across all sorts of different genres. Primarily poetry, that's your what I can take, is your real love. But you also do a lot of writing. And that's how I met you is at ankylosingspondylitis.net. We both kind of work there on and off and you more so than me, you write a lot of articles for that website. What drives you? I mean, you're relatively new to the diagnosis compared to a lot of folks that doesn't make it good or bad. But what drives you so much to be such a giver as you go through your own journey with this?

Lisa:

Great question. You know, I think I love First of all, Health Union, ankylosingspondylitis.net they're such a lovely bunch of people, it feels like family at this point. For me, I think there's always been a part of me that wants to write to create, like a community or a sense of understanding of the self. And I guess for a long time, I sort of felt like, writing was my way of being in the world and that was my contribution. It was how I could help. It was how I could make friends, how I could understand myself and others. So it's just like, kind of my natural language is to write. So when it comes to pain or suffering, whether it's mental or physical, I just, I don't want people for so if I can write anything that just makes someone feel a little bit less alone, or at least as though their their thoughts are valid. I'm glad writing can enable me to do that. Because I think for a long time, reading helped me feel less alone. So I guess I just want to be what I was given, I guess, reading and writing when I was young, 

Jayson:

You do such a large amount of writing. And I find all of your articles very interesting. I've actually based several episodes of the podcast on your articles.

Lisa:

Wow!

Jayson:

I think this is really interesting, because I grew up before the internet developed and was diagnosed with ankylosing spondylitis before the internet. And I was just told you have this thing, good luck, and really wasn't told much after that, that's 35 years ago. You wrote an article that I think could help a lot of people and I'm going to have a link to it in the show notes. But I want to get some more feedback from you and it's called Staying Sane, and Managing AS Facebook Group Usage. That's one of the things I see people post stuff online. And sometimes I think you can't really attribute everything that goes wrong in your life to AS sometimes you can, maybe, but I see this constant usage, and how do you try to remove yourself when you're so prolific online, kind of keep saying,

Lisa:

Ah, well, when I was first diagnosed, I, you know, just being diagnosed in 2017. I still knew I had it before then, but I just, I couldn't afford a rheumatologist. So it was a lot of Internet stuff for me, like a lot of group...]]>Jayson:

Lisa, welcome to the show I just gave the intro about you and it's so rich and varied and your background is so immense. But on top of all those interesting and fantastic, great things that you've accomplished, you also have Ankylosing Spondylitis. How did you come across the discovery of Ankylosing Spondylitis? And is it something that ran in your family?

Lisa

Yes, well thank you so much for having me. I really appreciate being here. I was diagnosed in 2017. But I've been having symptoms for about a decade. And it does run in my family. My father has it, my aunt, his sister has it and we think that my grandma, who has passed now, had it. She probably had the worst of all of us, sort of in that, I think it really debilitated her. And then I probably have it worse than my aunt and my father. So it's definitely been a journey and just talking about it and, you know, researching, it's something I'm really passionate about. 

Jayson:

Well, of course, it you've got such a varied background in being published across all sorts of different genres. Primarily poetry, that's your what I can take, is your real love. But you also do a lot of writing. And that's how I met you is at ankylosingspondylitis.net. We both kind of work there on and off and you more so than me, you write a lot of articles for that website. What drives you? I mean, you're relatively new to the diagnosis compared to a lot of folks that doesn't make it good or bad. But what drives you so much to be such a giver as you go through your own journey with this?

Lisa:

Great question. You know, I think I love First of all, Health Union, ankylosingspondylitis.net they're such a lovely bunch of people, it feels like family at this point. For me, I think there's always been a part of me that wants to write to create, like a community or a sense of understanding of the self. And I guess for a long time, I sort of felt like, writing was my way of being in the world and that was my contribution. It was how I could help. It was how I could make friends, how I could understand myself and others. So it's just like, kind of my natural language is to write. So when it comes to pain or suffering, whether it's mental or physical, I just, I don't want people for so if I can write anything that just makes someone feel a little bit less alone, or at least as though their their thoughts are valid. I'm glad writing can enable me to do that. Because I think for a long time, reading helped me feel less alone. So I guess I just want to be what I was given, I guess, reading and writing when I was young, 

Jayson:

You do such a large amount of writing. And I find all of your articles very interesting. I've actually based several episodes of the podcast on your articles.

Lisa:

Wow!

Jayson:

I think this is really interesting, because I grew up before the internet developed and was diagnosed with ankylosing spondylitis before the internet. And I was just told you have this thing, good luck, and really wasn't told much after that, that's 35 years ago. You wrote an article that I think could help a lot of people and I'm going to have a link to it in the show notes. But I want to get some more feedback from you and it's called Staying Sane, and Managing AS Facebook Group Usage. That's one of the things I see people post stuff online. And sometimes I think you can't really attribute everything that goes wrong in your life to AS sometimes you can, maybe, but I see this constant usage, and how do you try to remove yourself when you're so prolific online, kind of keep saying,

Lisa:

Ah, well, when I was first diagnosed, I, you know, just being diagnosed in 2017. I still knew I had it before then, but I just, I couldn't afford a rheumatologist. So it was a lot of Internet stuff for me, like a lot of group chats, a lot of Facebook. Yeah, Facebook group use. And I remember in the very beginning, I was using it to, I was essentially driving myself crazy. I would ask about anything asked about any symptom, you know, read everyone's stories think they're going to be my own. It took a while for me to realize that it is very, very individual and that, you know, if someone is, you know, incredibly, incredibly ill, it's not necessarily reflect everyone else's past and likewise, if someone has an awesome journey, it's not going to reflect what everyone does look like and it changes every day. So I feel like right now I read the group you know, I can see when someone is just need a little bit of comfort. I try to add it in there, say something that say something supportive and take everything else with a grain of salt. People can say anything they want, they can this miracle drug, and this experimental setting or alternative therapy has cured me. And it's like, okay, you say that I don't need to take that into my brain. It's just a matter of building a wall this point because I was so gullible and influenced by everyone else's everything that I had to draw a wall. And now it's like I, you know, I post in these groups and I talk to people, but everything's with a grain of salt Now, even when I get advice from people in those groups, if the greater I have to do that, and I think everyone should do that, because you will throw yourself into a spiral thinking, Oh, my God, this is gonna be he or this drug is not gonna work, or this is gonna cure me. It's like, you can't go there and your mind.

Jayson:

Yes, I completely agree. I think that's probably one of the biggest things that when I see somebody new, come onto the forums, I try to really get into their brain that my journey is not your journey, I'll be happy to talk to you on your journey. But it it you might, you know, I see people that are 67 years old, they're doing yoga, they're doing great. And they have ankylosing spondylitis. And I see others like myself that have kind of fallen apart. And some of it is my own doing because I didn't understand what was going on. Some of it's just the way the disease struck me and, and we're all different. But we you have to like use it, you have to learn what to take and what to just kind of skip over and, and, you know, just kind of go from there.

Lisa:

Exactly. It's hard, because it's an emotional thing. But you have to like protect yourself.

Jayson:

And for everybody listening right now I'm going to have a link in the show notes to ankylosingspondylitis.net and it's going to have Lisa's page with all of her writings. So if you go right to that link, it'll direct you just directly to the writing. She's done on AS. But I don't want to focus on just that. You're a prolific writer, of poetry of short essays of all sorts of things, I'd love it if you would showcase for not only myself, but the listeners a little bit about some of the poetry you've written.

Lisa:

Oh, sure. So I was writing since I was a child, I studied writing and school, I got a master's degree in it, although I would not recommend going into debt for poetry. I, and I mean that I, my first love, it's my first language, I love that poetry can be so many different things. It can sound from poet to poet, it can encompass all the human condition and all the kind of like nuance and complexity of human condition. So I've written a few books of poetry, my last book of poetry is called Nympholepsy. It came out two years ago. And it's kind of an exploration of the kind of like, shedding of the old self and how we kind of grow into the new self. But yeah, I've, I've written poetry, I've read poetry all over the world at this point. And I'm back into it. Because Lately, I've been so focused on the nonfiction, so writing about s and other health stuff that I think I'm missing poetry and, again, so I have been writing a little bit about trauma, and also chronic illness and poetry. So I'm trying to see how I can talk about as the body and the trauma of the body and all the body kind of Thor's pain, and I'm trying to do something with that with poetry. It's hard because you're so beautiful. And this feeling is so ugly, but you know, I'm gonna, I'm gonna say I hope to do

it. 

Jayson:

Well, let me ask you, this could be a really dumb question. But again, I'm not a, I don't read poetry. Is there a niche? Is there a market for chronic illness poetry? Is that something or is that something you're creating?

Lisa:

Oh, no, no, there's there's definitely it's not a dumb question. And I would say that there's a lot of there's so many niches, I guess, the way of putting it, and there's certainly a lot of poets writing about chronic illness. I have a magazine called Luna Luna, that I run, and we publish pieces about chronic illness all the time, whether it's essays or poetry. And I mean, I just haven't really dabbled in it just yet. But certainly people have. And it's awesome. that runs the gamut of perspectives. 

Jayson:

What's interesting for the listeners, because you're not seeing what I'm looking at right now. But in the show notes, I'm going to have a link to Lisa's website in on this website. There's so much there that I haven't even scratched the surface of it. And it's broken down into topics, you know, the standard about and a diary. And I didn't even really look at the diary much. Is that something you update on a somewhat regular basis?

Lisa:

Yeah, that's pretty regular. Maybe every week, something, a few things go up and it's from all different people.

Jayson:

Okay, I follow you on Instagram. So I'm very familiar with the posts that you do there. But I really had never even thought to go to your website to look and see what you were posting there. It looks like some may be similar. Some may be different.

Lisa:

Yeah, exactly. So we try to publish a lot of people and voices But also, you know, I write for it myself too.

Jayson:

And with that writing, though, if there's somebody that's listening right now, and I guess it really wouldn't matter where they're at in the world, but if they're interested in poetry, reading poetry getting poetry published, that's something you maybe look for in Luna Luna, I'm not.

Lisa:

Absolutely, we generally have open submissions in the summertime. And then throughout the year, the editors, including myself, will just sort of open a short call for poach. So for example, about a week ago, I asked if people wanted to hand over poetry, about autism and poetry about chronic illness. Oh, actually, that will close and I'll do a call for something else. But yeah, we're always looking for new poets, and from around the world poets was marginalized back, put chronic illness like we would love it.

Jayson:

Now, is your poetry, as a woman, I'm guessing you mostly write from a woman's, you know, perspective point of view? Is it mostly on women's topics? Or is it kind of really generalized?

Lisa:

I would say that it got to feminine energy, but I don't think it's about women's experiences or topics necessarily I do. I write poetry is really about human experience. So even though it's filtered through the experience of being a woman, it's, I don't think it's, I don't know, I guess it's hard to talk about your own writing. But I would think it's got feminine edge, definitely more broad.

Jayson:

And Lisa, I'm going to read one of your poems here. It's a neat one. It's both of us are of Italian descent. So this is kind of a neat little way to, to look at your poetry, but I wanted to expose the listeners to some of your poetry, who might be like me kind of afraid and not know where to start with poetry. Maybe not have had even looked at poetry since high school. So this one is called 

Saint of Sea Change.

These days I am

blood-song

in this choir of ghosts

I have visions of ancestral cemetery, arabesque

and honey, tesserae of a thousand lives.

That we haven't all been so sick, so dead at sea,

in cathedrals, where we kneel to devils

because our hearts haven't been made whole.

I am so tired of the cycle

and so full of it. veined and spinal full of the cycle.

I could linger forever in this bloodwound,

that I would become patron saint of my own sorrows.

Praying at the altar of myself, I am the altar, and I am the prayer.

I see my reflection in this loop, my eyes and sepia belonging to a girl

who washes linen in the sea, who suckles limone and god.

I want to give my name a new day

& stand in our dark wound and touch it,

light it up by the fire of Etna. The zibbibo and pomelia,

children of children of children who made me

flooding the streets of heaven.

Have ever looked at the sea? It is full of the

drunk and the poor,

of names that get sliced by time and oppression.

It is so honest,

you cry into its open palms. It says you’re home.

I am opening wounds that have never seen the light

generations of clasped palms. I am speaking my name with the music of it. I translate a thousand waves cresting.

I am the poet. I am the line break.

Very interesting.

Lisa:

Thank you, I think you read that beautifully.

Jayson:

Well, thank you. When I read that, tell me what goes through your mind when you wrote something like this? Because it's both, you know, I can see this person, you know, on the shore doing these things, but it's also very dark in spots. Tell me what goes through when you write something like that poem? 

Lisa:

And for some of my recent poetry, I've been trying to explore the ancestral. So kind of dig in a little bit into my my family background, and in my family came from Sicily. They were poor, they didn't have much opportunity and like so many immigrants came over to the New York New Jersey area, just recently. So it was just my grandparents who were, you know, from Sicily and Calabria. And, you know, reading about Italian immigration and how Sicily differs from Italy and all those cultural differences. And I've just been thinking about how many people have been forgotten or cast away, or how much they struggled and how much they turned to God for hope, and maybe still struggled after that. So it just kind of wanted to write a poem that embraced all that beauty of the Italian culture, but also the suffer and hopelessness that some people may have felt and I know some of my family Yeah, I try to, in my poetry, I try to really create like a lush sense of emotion. So that's why it's so I guess dramatic.

Jayson:

It's just like, if you were painting a picture, you're not going to paint everything in one tone, you're going to use all the skills that you have to paint that picture. And that's what you're doing here is you're layering, you know, you're letting me see this lady by the ocean, but you're letting me see some of the trauma and some of the issues she's dealing with on a mental side. I don't know, I thought it was really good. And I'm, I'm not a poetry person. And I don't mean that in a bad way. It's not that I don't like poetry. I have no exposure to poetry.

Lisa:

No, that's very fair. Thank you so much. I love the idea of layers. That's beautiful.

Jayson:

And when I say prolific writers, I'm telling folks go to Lisa's website and click on the Read Me tab. The items that will come up there that you have written about in your short life are just amazing, the just the depth of it. Like I said, I've read a couple of things and peeked around at a couple of things. But really, as a neophyte of poetry, you kind of get where you know where to start. So I think it's really a well laid out website. And I would encourage anybody that has desire to write poetry has written poetry, to reach out to you, whether it be through Instagram, or GS, your website, you're all over Facebook, you're all over the place. It's easy to get in touch with you.

Lisa:

Yeah. I would love to hear from people.

Jayson:

Thank you. Now you live in New York City, correct?

Lisa:

Yes, I do. 

Jayson:

How is that as a city for a person with AS? How is it easy to get around? Is that a challenge? 

Lisa:

That's a great question, because I've been thinking a lot about accessibility. So I'm really lucky and I don't know if the word is lucky. I'm privileged right now, in that I am very mobile, I can walk on my own, I don't need any assistance, that although there are some days where the pain is too much, I know walking just doesn't feel great. And I can't do it for a long time, I have to give out many give out. So the city in general can be really tough navigate, I think with all the subway stairs, and I mean, you're going up and down, like 100 staircases everywhere of day, if you're going on the subway, there are elevator banks, but sometimes they're hard to find, to have to walk to them. So that's a whole different layer of issue. And then in terms of just the street, and let the rest of the city, a lot of places have some accessible entrances if you're using a wheelchair, but a lot. So really, it's like, on that just fundamental level, it can be kind of challenged sometimes. But just general, like New York City Life, when I was younger and had more energy and wasn't nearly like I am today, which is having fatigue all the time, New York playground, and it felt like this amazing thing where I could find all this opportunity. And now I've become a freelance writer. So I write in my house, so I'm not really taking part in that the, you know, sort of New York City lifestyle as much, nor do I really want to drag on my energy. So I think it definitely is a city that offers a lot, I can see good doctors here. There are a lot of doctors here. But then there are a lot of cool things here. Like I can go swimming if I want to because I'm in pain, and there's pools you can have access to. So just a lot here, but at the same time, not that I there's something to be said for having a similar pace of life when you're trying to manage a disease. And that's something I hope of in the future, I'll probably leave the sea. So it's a mixed mixed...]]>2ed8100e-12ae-48b1-a097-e2264098c004Sun, 18 Oct 2020 09:00:00 -040047:35falsefull7272What You're Forgetting To Discuss With Your DoctorHello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody has been just having a fantastic week. It's always exciting when I get to bring a new episode out. And this one really I think is going to be real helpful for some folks. But first, before we get to this week's episode, let's take care of a couple of housekeeping things. I need you to help everybody that listens, I really want to see the both Instagram page if you go to Instagram.com/as_podcast, I have a link in the show notes. I hope you go there like the page if you're on Instagram, as well as go to spondypodcast.com and sign up for the newsletter. I really love seeing those numbers grow and I want to see him keep ratcheting up, keep growing so that I can stay in touch with everybody. 

So onto this week's show, I see a lot of questions across the different Facebook forums, from people that are fairly new to being diagnosed with Ankylosing Spondylitis. Maybe in the last few years, maybe they've moved have not been real diligent about going to a rheumatologist thought, oh, I'll treat it naturally. And just haven't built that rapport up that some people have after dealing with the rheumatologist for over, you know, 10 plus years. So I came across this article, and I thought it would really be helpful. And it's titled Ankylosing Spondylitis doctor discussion guide, what you're forgetting to ask your doctor. And I really thought it covered a lot of good basis, I know what it's like you get in there, you maybe get a little nervous dealing with the doctor dealing with the staff, it's old hat for them, they they deal with the stuff every day, we see them maybe two or three times a year. So it goes back to making sure that you are your best advocate. That's a theme I try to put through this whole podcast show is that the best advocate for treating your disease is going to be you making sure that you give all the proper information to the doctor. And with that said, I wanted to go through the eight things that this article discussed. Now, they make a really good opening. And they say a diagnosis of Ankylosing Spondylitis may leave you feeling overwhelmed and concerned about the future, AS is a chronic or long term form of arthritis that causes inflammation, stiffness, and pain in the joints of your spine. And really the joints of your body, your doctor will go over AS treatment options with you. But they may not address everything you need to know to help you manage your condition. And then they go on to these eight different things. And I really thought they were good included in this. When you go down to the show notes, there is a form that they have in the article that you can print and take to the doctor's appointment with you. And I'll have a link to that. So you can go ahead and and pull it up as a PDF form printed off and take it to the doctor if you'd like.

Number One, What can I do to manage my AS at home? Well, there's so many ways that you can look at your house to make it work better for you. And it's important that you know what your limitations are so that you can best address those, you know, maybe at some thing like vacuuming, maybe instead of the vacuum you have, you need to look at a lighter vacuum, maybe even a robotic vacuum, or vacuuming just sections of the home at a time instead of doing the whole house, maybe do a couple bedrooms or a living room, take a break, you know, whatever needs to be done. But there are different things you can look at. If it's vacuuming causes issues, you know, maybe it's ironing, maybe you need to sit down while you iron. I haven't ironed anything. Gosh knows how long. So that one's kind of out the window. I don't even know if I own an iron. I don't think I do grocery shop online or enlist the help of grocery store clerks to bag and load your groceries. This is a pretty easy one. As we move forward, it's been getting easier and...]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody has been just having a fantastic week. It's always exciting when I get to bring a new episode out. And this one really I think is going to be real helpful for some folks. But first, before we get to this week's episode, let's take care of a couple of housekeeping things. I need you to help everybody that listens, I really want to see the both Instagram page if you go to Instagram.com/as_podcast, I have a link in the show notes. I hope you go there like the page if you're on Instagram, as well as go to spondypodcast.com and sign up for the newsletter. I really love seeing those numbers grow and I want to see him keep ratcheting up, keep growing so that I can stay in touch with everybody. 

So onto this week's show, I see a lot of questions across the different Facebook forums, from people that are fairly new to being diagnosed with Ankylosing Spondylitis. Maybe in the last few years, maybe they've moved have not been real diligent about going to a rheumatologist thought, oh, I'll treat it naturally. And just haven't built that rapport up that some people have after dealing with the rheumatologist for over, you know, 10 plus years. So I came across this article, and I thought it would really be helpful. And it's titled Ankylosing Spondylitis doctor discussion guide, what you're forgetting to ask your doctor. And I really thought it covered a lot of good basis, I know what it's like you get in there, you maybe get a little nervous dealing with the doctor dealing with the staff, it's old hat for them, they they deal with the stuff every day, we see them maybe two or three times a year. So it goes back to making sure that you are your best advocate. That's a theme I try to put through this whole podcast show is that the best advocate for treating your disease is going to be you making sure that you give all the proper information to the doctor. And with that said, I wanted to go through the eight things that this article discussed. Now, they make a really good opening. And they say a diagnosis of Ankylosing Spondylitis may leave you feeling overwhelmed and concerned about the future, AS is a chronic or long term form of arthritis that causes inflammation, stiffness, and pain in the joints of your spine. And really the joints of your body, your doctor will go over AS treatment options with you. But they may not address everything you need to know to help you manage your condition. And then they go on to these eight different things. And I really thought they were good included in this. When you go down to the show notes, there is a form that they have in the article that you can print and take to the doctor's appointment with you. And I'll have a link to that. So you can go ahead and and pull it up as a PDF form printed off and take it to the doctor if you'd like.

Number One, What can I do to manage my AS at home? Well, there's so many ways that you can look at your house to make it work better for you. And it's important that you know what your limitations are so that you can best address those, you know, maybe at some thing like vacuuming, maybe instead of the vacuum you have, you need to look at a lighter vacuum, maybe even a robotic vacuum, or vacuuming just sections of the home at a time instead of doing the whole house, maybe do a couple bedrooms or a living room, take a break, you know, whatever needs to be done. But there are different things you can look at. If it's vacuuming causes issues, you know, maybe it's ironing, maybe you need to sit down while you iron. I haven't ironed anything. Gosh knows how long. So that one's kind of out the window. I don't even know if I own an iron. I don't think I do grocery shop online or enlist the help of grocery store clerks to bag and load your groceries. This is a pretty easy one. As we move forward, it's been getting easier and easier with the COVID issues. Again, this is really more applicable the United States. I unfortunately don't know how this works in other countries, but in the United States, you can go right online, order your groceries from some of the major retail chains. And then you pull up, you call them text them, whichever it is and they bring your groceries out, put them in your car, and all you got to do is take them into the house. If you want to go into the store, that's fine. Maybe it's time to use a cart and ride around the store. Don't worry about what other people might think or the looks you might get. You can't be worried about that you've got to worry about what works best for you. I've used carts before. You know as many of you know, I have issues with walking long distances. Lately though, I've been using a regular grocery cart and leaning on it so that I do get some use and exercise of my legs. So it's whatever works best for you. You know, have somebody help you load the groceries in your car, and I invested I'll have a link in it in the show notes in this cart that I use to you know, pull my groceries in the house. I don't carry them in bag by bag, I can't do that. So I put them all in the cart, wheel the cart in and then unload from there. Maybe you have issues with loading and unloading the dishwasher? Well, maybe you need to load it while you're seated. Bring a chair out into the kitchen and load the dishwasher. That way. Maybe you need to empty it while you're sitting down? You know, that's certainly an option. Again, bring a chair out. And it could be where you work with your partner, if you have one, where they put the dishes up in the cupboards, if you empty it and load it, you know, you can figure it out whatever works best for you. And then there are different tools that you can use. And in the shownotes, I'll have a link to both kind of a grippy arm thing I that's a real technical term that I use to put stuff up high, not heavy stuff, I can't hold heavy stuff. But there are certain things if I need to reach it up high, as well as the thing I used to put on socks and it's like $10 -  $11, something like that, that's easily ordered, off of Amazon. So those are just little tools that you can help and little ideas to help you around your house. Again, you have to do what's best for you, I found that I can't dust and once you know, just one whole thing through the whole house. So I dust room by room, and I pick a room to dust each day. So I know I'm going to do that one room, probably going to vacuum it too. And then I'm done for the day with that, and I'll do another one tomorrow. And then finally around the house, make sure you're practicing good posture; make sure that you are sitting up straight one possible laying down flat as much as you can, or as easy as you can. So those are just things make sure you have maybe cushions behind your back, sitting high back chairs at dinner. All of those things can help to contribute to your back, not hunching over Don't slouch when at all possible.

Number Two, Should I quit smoking? The answer is yes, you definitely should quit smoking. If you smoke, you should quit. Research has shown that smoking increases inflammation in your body. So if you're smoking, you're going to have flares and things of that nature or the potential to increase flares, I should say. And it also increases your risk of cancer, heart disease and stroke. It's more difficult to manage multiple chronic conditions. So if you smoke quit, it's a you know, habit that I know for people can be hard to break, I watched my father, not be able to break the habit, but use it all your options that are available to you, for many people their jobs. If you're still working, look at your employee benefits. There are companies that offer smoking cessation programs pay for and pay for some of them. So check into whatever options are available. I know anybody that smokes does not like to be told to quit smoking. But if you smoke quit, it's one of the best things you can do for your life. So and then lastly, ask your doctor about any smoking cessation programs that he or she may have access to. 

Number Three, Is there an AS diet? Well, kind of, is the probably the best answer. I've looked at the no sugar, no grain diet. I had Vinny torta rich, the developer of it on way back on episode three. And I have a link to that in the show notes. There are some key things that you want to look at, namely, cut out processed foods, any type of processed food is going to be terrible for you whether you have a house or not, if you can push to eliminate those. That's fantastic. There are some things like the Autoimmune Protocol Diet, I think something of that nature. And a few other things would have been Mediterranean Diet, Keto Diet. The thing is with ankylosing spondylitis; we all react to things differently. So with that said, What works for one person may not work as well if at all for another, but there are some baseline things that you can consider have plenty of produce, doesn't mean you got to be vegan or vegetarian or anything like that, but have plenty of produce, especially vegetables, high end calcium, to help with preventing osteoporosis, you want high fiber foods, so that can be part of the vegetables you eat. You want lean protein. So you know if you're into hunting, a lot of wild game is very lean. If you're not look for very lean cuts in the store of meat or the cut you get cut a lot of the fat off of them if you can as minimal marbling to some of the meats the cheat as possible. Look at fish, especially fatty fish like salmon. That's a very good thing to add in. If you can have that a couple times a month that only works to better yourself because of the Omega acids and things of that that you find in the fatty fishes nuts if you're not allergic to peanuts or tree nuts like that, look at and some of the nuts I believe it's the rar the nut the better. So if you like salted peanuts would not be a good thing. But raw almonds wood some very limited whole grains This is one thing the article says is talking about whole grains and I really don't agree with him on that. I would say that have them is unlimited amount of in your diet as possible. And the other thing that the article talks about which I found really interesting as I read some of their research is dairy. I don't need a lot of dairy but I had heard that you I do eat I eat cheese. I like cheese. I had heard that dairy itself was an automatic inflammatory issue. But what they say in the article is that dairy falls in the middle of the inflammatory spectrum. Research indicates it may cause inflammation and people allergic to milk. However, it may have anti inflammatory benefits and people without a milk allergy. So what is it? I guess if you don't have a milk allergy, dairy in moderation is probably not a bad thing. So again, ask your doctor if dairy is a good choice for you. And if you're overweight, ask your doctor for a referral to a nutritionist who might be able to help you come up with a healthy eating plan. 

Number Four, What are the best exercises for AS? Well, I would say the best exercises are the ones that you can do. We know regular exercise is critical to managing as if you're sedentary or constantly sitting on the couch that is not good. It allows joints to stiffen and increases your overall level of pain. That type of exercise you do is important though, you've got to do what I say is again, do what your body will let you do avoid any high impact exercise. If it hurts you there are some people that run marathons that have ankylosing spondylitis. If it's not affecting your joints, and you can do it, do it in moderation. I know I said that I say I think they run triathlons. But still, it's a lot of running to do, do what your doctor tells you is best. Some of the key things to do are things like swimming, yoga, I had the two gentlemen from Yoga for AS, Jamie and Jeff. And I will link to that episode in the show notes. They're great. They're yoga instructors and they both have Ankylosing Spondylitis. And their Yoga is designed around helping you to stay mobile and active, I'd encourage you to go to their Yoga for AS follow them, and get active polities gentle walking, and gentle stretching. There are people on I've looked at their pages on Instagram that showed different stretching exercises that they do. And they have Ankylosing Spondylitis. So there are a variety of options that are available to us. We're all at different levels, the stretching, or polities or things like that is not anything that I can do based upon how far I am along the fusion spectrum. But if you are newer to AS, you're newly diagnosed, you don't have a lot of fusion and things of that nature and yours just really getting going along with a good dietary, you know, workup and understanding what you're you should be eating exercise, and the medication could keep you from ever developing as to any real bad, you know, overall condition. So you know, you are in control; you've got to be the best one to tackle it. 

Number Five, Where can I get AS support? AS support is everywhere, it's more available now than it's ever been. Now with the Internet, you can reach out from anywhere and hear from people around the world as to what they're doing to help combat their Ankylosing Spondylitis. So for local, you know, help, you might have a physical therapist. In addition, these are all in addition to your regular primary care physician, you might have a physical therapist, maybe a nutritionist, if you're really looking to lose a lot of weight or some weight. Maybe you have a therapist or mental health professional that can work with you to make sure you don't fall into any type of depression or any anything. You know, it's always good to talk. Maybe it's marriage counseling if you're having issues with a partner or spouse. So just get as much support as you can. And don't hesitate to reach out to the different forums and ask people for help answer questions, things that nature. 

Number Six, does AS cause complications? Boy, can it cause complications, on top of the mental issues, whether it be marriage issues, dating issues, divorce issues, there's the physical issues that we deal with. And we know that inflammation can cause all sorts of complications. And they can be inflammation in the spine, which we know is going to happen with Ankylosing Spondylitis, but it can affect other parts of your body too, and affect your eyes can make it difficult to breathe might be fractures as bones and joints weaken. And it could be heart problems from increased inflammation if it's not addressed, and you're not taking care of it properly with medications to keep the inflammation down. So not everyone that has as will develop some or all of these or any of these complications, really. So ask your doctor, make sure you're keeping an eye on yourself and talk with your doctor about any red flags that may be coming up things that you need to be concerned about, so that you can best address them. It might be exercise, medication, or diet or some combination of all of those that will help you address whatever you're concerned about.

Number Seven, What research is being done on Ankylosing Spondylitis? There's a lot. I did an episode a while back with Dr. Fox from the University of Michigan. And we briefly touched on some of the research being done in the field of spondyloarthritis in general and Ankylosing Spondylitis. And, you know, researchers, there's three genes that researchers have identified that contribute towards Ankylosing Spondylitis. And there's more coming as they as they learn more about this. So they know that, to understand it, researchers are seeking to better understand the following the inflammatory and immune responses of Ankylosing Spondylitis, how environmental factors impact as if there's new therapies can slow or stop spinal fusion. And if the gut microbiome plays a role in the development or progression of AS, again, talk to your doctor if you want to see about getting involved in any type of as research Your doctor may know of studies that are going on that they can put you into get involved with. The other thing you can look at is the Ankylosing Spondylitis, web sites that are specific to each country. In this case in the United States, the spondylitis Association of America has a section that they put up that contains research studies that are taking place, head over to the show notes. I'll have a link to a study that's trying to be conducted on your gut and food and everything that takes place and they're looking for people to sign up for that they want to study how it affects Ankylosing Spondylitis patients. 

Number Eight, What is my outlook? That's really hard to say, because that's entirely dependent upon what you do as your best advocate. In general, for newly diagnosed people with ankylosing spondylitis, the outlook can be fairly good. You know, there are new medications available. There are new medications coming and who knows what the future will hold. And if you are diligent about diet, exercise, and medication, you may have little to no Ankylosing Spondylitis issues, compared to somebody like myself who had no medication available. For the first say, 20 years of Ankylosing Spondylitis the first 15 years, let's say. So, if you're newly diagnosed, make sure as as this whole episode has been about as to be your best advocate, I can't stress that enough, you have more control over the progression of this condition than you might think. And it's up to you to communicate rarely with your doctor, ie to be your best advocate. And then, once the doctor and you have come up with a plan of attack, to follow it, if they tell you to try something, try it. If they bring up a biologic to you, I would encourage you to try it. I know there's a lot of people that say oh, I don't want to deal with biologics, I don't want to take what I'm scared of. You know what, try it. If you have a bad reaction, some people are going to have very bad reactions, that's just part of medication. But that's not standard across the board. So you might have sight injection, rashes bumps, when you put the medication in you, it creates a welt on your leg a little bit, at least on mine, where the medication is, sits there till it absorbs in your system. So there's little things like that that are just normal. But if you have anything that's abnormal, those are where you want to contact your doctor, if you're really afraid of the biologic shot, a lot of our shot forms. If that concerns you, talk with your doctor about taking the first few shots in their office so that you have the full medical staff there that can help you with administering the shot watching. See if there's any site injection reaction spots, any type of allergic reaction, you know, anything. 

So with that said, ultimately, the bottom line is that you are your best advocate. Nobody else is going to fight as hard for you as you are. So don't let fear of the unknown. And learning how to manage your symptoms scare you and let you think, Oh, I'm going to act like a turtle. If I just, I just ignore Ankylosing Spondylitis, it'll go away. It won't, once you have the diagnosis, develop the plan of attack and go after it. And again, with that said, jot down your questions, jot down the notes the doctor says to you so that you have a way to refer back to them. So it's not just based upon your memory and goes in there and start to develop the plan of attack that's going to work best for you. Thank you again, so...]]>0667e532-2af6-4a1d-b88c-7cff1f5c239aSun, 11 Oct 2020 09:00:00 -040020:31falsefull71718 Tips For Better SleepingHello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How is everybody doing? This week's topic, as you saw from the title is about sleep, and some tips to help hopefully get a better night's sleep. But before that, let's take care of a couple of housekeeping things. Head over to the show's Instagram page at instagram.com/as_podcast. Just remember @as_podcast, head over there, like the page, send me a message that you're on there, comment on some of the posts, and watch, I'm gonna have some new pictures coming up of my service dog in training Bandit. He's growing; he's just turned 10 months old. He's really making vast strides in the training that we're doing. So it's really great. Sometimes I think he's training me sometimes I think I'm training him. Either way, it's been a fantastic journey that the two of us have embarked upon. Also go to the website spondypodcast.com and sign up for the newsletter. It's been amazing. I've seen just a huge huge increase in sign-ups in the last three, four weeks and it's really cool to see all those notifications coming across. So go to spondypodcast.com and sign up for the newsletter, you'll get a prompt when you go on to the website. And lastly, the big news is a download came in for the show from the 101^st country that the show has been listened in and that was Madagascar. So there's like 195 countries or so in the world and this show has been accessed in like 101 of them. To me that's amazing. Over 50% of the countries available somebody has access to the show just mind blowing. When I sat down and first recorded this and thought nobody's really going to listen, you know, why would anybody who I didn't even really know, anybody with Ankylosing Spondylitis to listen. So I can't thank all of you, the listeners, enough, the support, the messages, the encouragement that I get on a weekly basis is just fantastic. Feel free to drop me an email at any time. You can reach me at Jayson@spondypodcast.com, love getting them I'll respond to you as quickly as I can. 

So with that, let's get into today's episode. The topic I want to talk about is sleep. For many of you I see it a come across all the different Facebook forum groups. What's the best mattress, what pillows should I be using; I would kill to have some sleep even just an hour. Sleep is an amazingly challenging thing to try to get on a normal schedule when you have Ankylosing Spondylitis. I'm living proof of that. The daily fatigue that I deal with is amazing. I tell everybody that I can sit down in my office chair and be asleep and a few minutes I can put on something that I'm trying to read or study up on and I'll just fall asleep because I don't generally get a solid night's sleep like many of you. So part of my issue is sleep apnea, I have a really bad and I don't always wear my mask or if I get up from my bed and go out and sleep in the recliner. There's no cpap machine out there. I'm fixing that; I have a person that is getting a new cpap machine. So they're giving me their older one, I’m going to adjust it up so that I'll have a cpap machine in the bedroom and a cpap machine in the living room. Hopefully that'll really help out and make a difference in the sleep. So in this week's episode, I found an article in healthline.com. I'll have a link to it in the show notes. It says eight tips for a better night's sleep when you have Ankylosing Spondylitis. And again, I use the term Ankylosing Spondylitis and I should really be using Axial Spondyloarthritis because these tips are whether you have non-radiographic or Ankylosing Spondylitis, they're applicable across the board. So I should get better in my own mind of using the term axial spondyloarthritis. But again, with that said, let's look at these eight tips that they talk about. Now the author she starts off by saying “you need sleep to rejuvenate your body and feel energized”, which anybody with ankylosing spondylitis can...]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How is everybody doing? This week's topic, as you saw from the title is about sleep, and some tips to help hopefully get a better night's sleep. But before that, let's take care of a couple of housekeeping things. Head over to the show's Instagram page at instagram.com/as_podcast. Just remember @as_podcast, head over there, like the page, send me a message that you're on there, comment on some of the posts, and watch, I'm gonna have some new pictures coming up of my service dog in training Bandit. He's growing; he's just turned 10 months old. He's really making vast strides in the training that we're doing. So it's really great. Sometimes I think he's training me sometimes I think I'm training him. Either way, it's been a fantastic journey that the two of us have embarked upon. Also go to the website spondypodcast.com and sign up for the newsletter. It's been amazing. I've seen just a huge huge increase in sign-ups in the last three, four weeks and it's really cool to see all those notifications coming across. So go to spondypodcast.com and sign up for the newsletter, you'll get a prompt when you go on to the website. And lastly, the big news is a download came in for the show from the 101^st country that the show has been listened in and that was Madagascar. So there's like 195 countries or so in the world and this show has been accessed in like 101 of them. To me that's amazing. Over 50% of the countries available somebody has access to the show just mind blowing. When I sat down and first recorded this and thought nobody's really going to listen, you know, why would anybody who I didn't even really know, anybody with Ankylosing Spondylitis to listen. So I can't thank all of you, the listeners, enough, the support, the messages, the encouragement that I get on a weekly basis is just fantastic. Feel free to drop me an email at any time. You can reach me at Jayson@spondypodcast.com, love getting them I'll respond to you as quickly as I can. 

So with that, let's get into today's episode. The topic I want to talk about is sleep. For many of you I see it a come across all the different Facebook forum groups. What's the best mattress, what pillows should I be using; I would kill to have some sleep even just an hour. Sleep is an amazingly challenging thing to try to get on a normal schedule when you have Ankylosing Spondylitis. I'm living proof of that. The daily fatigue that I deal with is amazing. I tell everybody that I can sit down in my office chair and be asleep and a few minutes I can put on something that I'm trying to read or study up on and I'll just fall asleep because I don't generally get a solid night's sleep like many of you. So part of my issue is sleep apnea, I have a really bad and I don't always wear my mask or if I get up from my bed and go out and sleep in the recliner. There's no cpap machine out there. I'm fixing that; I have a person that is getting a new cpap machine. So they're giving me their older one, I’m going to adjust it up so that I'll have a cpap machine in the bedroom and a cpap machine in the living room. Hopefully that'll really help out and make a difference in the sleep. So in this week's episode, I found an article in healthline.com. I'll have a link to it in the show notes. It says eight tips for a better night's sleep when you have Ankylosing Spondylitis. And again, I use the term Ankylosing Spondylitis and I should really be using Axial Spondyloarthritis because these tips are whether you have non-radiographic or Ankylosing Spondylitis, they're applicable across the board. So I should get better in my own mind of using the term axial spondyloarthritis. But again, with that said, let's look at these eight tips that they talk about. Now the author she starts off by saying “you need sleep to rejuvenate your body and feel energized”, which anybody with ankylosing spondylitis can say, of course, you know that fatigue is the worst part between 35 and 90% of people. That's a huge basis. There's a link to the study in the article, people with AS complain of poor sleep, it's tough to stay asleep at night when your body hurts, which is so true. My hips, my back, my neck, my shoulders, you all understand that completely. We all have that spot or spots that just can get so sore when you're sleeping. The more severe your diseases, the less likely you are to get the rest you need and the less you sleep, the worse your pain and stiffness could become. So don't settle for disrupted sleep. The author says, see your rheumatologist and primary care doctor for advice on how to manage sleep issues. That's so true. Your doctor may in many cases, at least in the States; I don't know how it is in other countries. It may be similar but if you're having a lot of issues sleeping and you have Ankylosing Spondylitis, your doctor may send you for a sleep study. If they do, don't put it off. Go do it. One night we asleep in the hospital, it's not really a big deal. It's more of a, it's a hassle, but it's not a big deal. There's no pain involved, there's no anything, they just put all those electrodes all over you to monitor your sleep. The last time I had one done, they said, we want to let you sleep, you know, a couple hours monitor it. And then we'll put a mask on to get a couple hours of monitoring with a mask. So I had fallen asleep. And it wasn't more than they were waking me up and I said, has it been to three hours already? And they're like, no, it's been like 15 minutes your apnea is so bad, we just want to put the mask right on you and so that's how bad mine was. And part of it's because I'm so overweight, I need to lose 35-40 pounds. And I think that would help a lot with the apnea.

Number One, control your pain with effective treatments. Well, yeah, that makes sense. The less pain you're in, the easier it will be for you to sleep, make sure the best treatment to slow your disease and manage your progression. With that said, as the author states, a lot of people will try to treat it with NSAIDs. You know, there's a lot of people that are fighting the biologic, they don't want to take it they're afraid. There's a lot of misinformation on the biologic, older information or they read information applicable to rheumatoid arthritis and just automatically apply that to Ankylosing Spondylitis and that's not really always the case. There are some issues that biologics can cause in rheumatoid arthritis. That as far as the study showed don't carry over to Ankylosing Spondylitis. So just be aware that the more you can control the inflammation, whether it be a combination of biologics diet, exercise, all those controls can help you then get a better night's sleep and like all things, if the drug you've been taking isn't controlling your pain, see the rheumatologist see your primary care physician and see what they can do to help you get the more effective sleep that you need. 

Number Two, sleep on a firm mattress. I almost hated to say that because that's gonna cause like a firestorm of I don't want a firm mattress I use this I use that all of that scrape if you found the mattress that you get the best night's sleep on use it I happen to use a somewhat firmer mattress that works best for me. I know some people like the foamy ones, some people like to sleep number ones, whatever works best for you use that if it's allowing you to get a better night's sleep use it if you have a mattress that is not working for you. Mattresses are funny you find a store that will let you try one for 30 days, 45 days and you can exchange it for something different. But just make sure that in that process, they have a number of different mattresses to choose from. If they only carry one type of mattress and you commit to using it for 30 - 45 days you don't like it, they don't take it back then you're kind of stuck and mattresses aren't cheap. 

Number Three, exercise if you can before bed, maybe you take a brisk walk you know get your muscles and joints moving and get the blood flowing and that can help to put you in a more restful state when you go to sleep. It is you know getting everything working and you're not just going in from some sedated state watching TV to lay down where your body is already starting to shut down. It's going to shut down in a few hours and wake you up with a bunch of pain. The author states exercise improves the quality and quantity of your sleep it will help you get more of the deep and restorative slumber your body needs to heal. You'll also fall asleep faster if you get in a good workout that day. So it doesn't have to necessarily be right before you go to sleep. It could be something earlier in the day that gets you know it gets the blood pumping and get you work and get you active. I've got to try and get better at that I walk the dog so that is some exercise that I really don't count in any given day. But I've gone to I got a Fitbit and that I'll have a link to the one I got in the show notes that I think it's the Fitbit HR and it tracks my steps, my heart rate everything like that. If you have an Apple Watch, I think you can do the same thing. Something that will track what you're doing set a goal I set 3000 steps a day is my goal and that to me if I needed 3000 or more, that's exercise to get me up and moving. 

Number Four, take a warm bath warm water is soothing to sore joints as we all know so hot shower a warm bath a 20 minute bath before bed will loosen up your joints and relieve pain so you can sleep more soundly I don't like baths I don't take them but I will take a hot shower if I'm real sore if the weather like there's a storm front coming through for I go to bed I might just jump in the shower for 15-20 minutes some hot water to kind of just loosen everything up. 

Number Five, use a thin pillow you know this is another one that everybody's going to kind of have their own ideas. I don't use a thin pillow I use a medium sized pillow that helps me because I've got a lot of neck fusing going on. So a thin pillow would mean my neck would be in an angle that I don't like and I also don't use a really thick pillow because then my neck would angle up the other way. So it's taken some time but I found these medium pillows at of all places Walmart i think is where I pick it up. I've got the identification stuff downstairs but I think it's Walmart and if you have a local store like that look for they usually have some really thick pillows and really thin pillows for that medium one that might work better, for you as well. And also, the one thing I do is I replace my pillows quite often I get maybe you better if you buy a more expensive pillow and you don't have to replace as often, I don't know, I went with the cheaper ones, I replaced my pillow probably every six months, every eight months, somewhere right in there. 

Number Six, straighten up. Well, this is a lot like when you're standing or sitting, try not to slouch, when you sleep, try to straighten up, as the author says, try to sleep with your spine straight, you can lie flat on your back or on your stomach. Now, I can't lie in either one of those positions because I have some damage to a hip. And it doesn't allow that hip to straighten up. So there's no lying on my back or lying on my stomach. But I have found that I can lay on my side, either my right or left side, I'm good to go. Some people you sleep on your back your stomach, that's great. Again, it's personal opinion, do what's best for you. 

Number Seven, set up your bedroom for sleep. This can be done by, as the author says “create an optimal sleeping conditions before you slide under the sheets”. Maybe it's setting the thermostat at 68 degrees because you like a cooler or 72 or 74. Because you like it warmer, maybe it's putting a fan on blows wind on you, could be a type of sheet that you use that you find real comfortable all of that plays into whatever makes the bedroom most comfortable for us. I had one listener, tell me how they got one of those big body pillows and they will use that to prop either their right or left leg up at any given time during the night so that they're kind of stretching their hip and it helps them do maintain more of a straight posture when they're sleeping. So there are all sorts of ideas, options and things that you can use to set your bedroom up, pull the shades down, if you have them that way the sun won't come in and wake you up. If you are like to sleep late, you know. And the big thing is keep the cell phones, keep a TV keep all that out of the bedroom, if you're a light sleeper. If I get into a deep sleep, I sleep and there's nothing that'll wake me up until I'm ready to wake up. So if I have the phone next to me, or the TV, I even turned the TV on and fell asleep and not even realized I left it on all night. So again, everybody's different. But if you have a distraction, get it out of the room, anything that distracts you get it gone. If you need to go to one of the stores, or Amazon or wherever and buy those shades that blackout your window so that you don't have any sun coming in great. Whatever helps you create that room where you know that when you go to sleep, you're just going to sleep. I think that's great. 

Finally, Number Eight, get snoring checked out what we talked about earlier, if you're snoring, if you have a partner, and they're telling you that you are snoring, it's driving them nuts, they're waking you up, go ahead and get a sleep study done, your primary care doctor will order up the requirements. Again, I apologize that I don't know how this works in other countries. So when I reference how it works, I'm usually referencing just the United States. So again, I apologize to my foreign listeners, contact whoever is your primary care doctor, talk with them about getting a sleep study done. Storing is a sign of obstructive sleep apnea. That's a condition as the author states that can cause you to stop breathing for brief periods during the night, people with AS are more likely to have sleep apnea. And those with sleep apnea tend to have more damage to their spine. Well, that makes sense. I got fused spine, you know, I've had hips replaced as is fairly bad in that lower spine that is fused. So I'm overweight. And it all adds up to sleep apnea, which in real severe cases can kill you. So each time you stop breathing, your brain wakes you up to get you to start breathing again. As a result, you never feel like you're fully rested during the day. That's where that fatigue comes in to talk about. So again, if your partner or loved ones as you snore, and you've woken yourself up mid stores, see your doctor for an evaluation, the doctors have a lot of way to treat the apnea. And one of them is called like I said earlier, a cpap machine that's a fantastic machine, I put that little there's variety of masks, I have one that just goes over my nose and it pushes air into my lungs all night long so that I keep a standard straight breathing period. It's amazing when I wear it and then I go look at my Fitbit, you know information for sleep for that night. It's such a much much smoother sleep cycle that I go through. So basically the takeaway for this is that if you're living with AS and experiencing poor sleep, talk to your doctor, there might be some symptoms that you have that lead the doctor to say you have a new medications needed a medications needed or some type of issue like a cpap machine, so you get a better night's sleep, that sleep will let you be more rested will let your body be more healthy because it can try to work and heal itself and you know, just it can rest the parts of your body that are constantly under stress all day long from the AS and just life in general. 

So, you know, I know this is really a short episode. I hope you get some good takeaways. I hope some of them can help you even if one helps you to get a better night's sleep. That's fantastic. I really appreciate everybody. You're the best listeners that I have. It's absolutely amazing everything you do and if you'd like to support the show, go down to the show notes. Go to buy me a coffee.com slash as podcast and you can support the show by making a single donation, making a long-term donation. It's entirely up to you, but all of it is so appreciated. Thank you and everybody have a wonderful week.

Healthline Article – 8 Tips for Better Sleep With Ankylosing Spondylitis - https://www.healthline.com/health/ankylosing-spondylitis/better-night-sleep

Support the show at Buy Me A Coffee - https://www.buymeacoffee.com/aspodcast

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Jayson:

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm really excited because part of what I want to do with this show is bring people's stories to all of you listeners. And I do that by interviewing people that have Ankylosing Spondylitis or non radiographic. And today, I've got a really great guest. I've got Cary King on and Cary has been dealing with Ankylosing Spondylitis. Oh, geez, most of his life and was diagnosed about 12 years or so ago in his late 40s. And has had a interesting journey that I thought was really great to share with everybody. And with that said, Cary, how are you doing today? 

Cary:

I'm doing fine. How are you today, Jayson?

Jayson:

Great, I really appreciate the time to come on and talk with all the listeners to share your story about your journey with Ankylosing Spondylitis. What I'd like you to do is kind of take us back to what it was like for you before the diagnosis, what led you up to finally getting that diagnosis? 

Cary:

Sure. I actually started on NSAIDs when I was in my teens, when they came out with them, actually, before that I was on Feldene and to cope with arthritic pain, and they could not figure out why I had arthritic pain at that age. So I lived on NSAIDs all the way up till I was about 46 years old and at that point, they took me off the NSAIDs because I had been diagnosed with kidney failure due to some nerve damage from my spine and that's when I got the diagnosis, too. But I had ankylosing spondylitis, and what caused us to become aware of that is once they took me off of it and said two weeks later, I had reached two feet to get a telephone while I was standing and the phone was ringing and I ended up on the floor for three hours and then the bed for three days until I went to the neurological surgeon in Nashville, Tennessee at the time, I was living in Owensboro, Kentucky, and then a man, he diagnosed me with ankylosing spondylitis and said that if he touched me in any way with surgery, I would really have a paralyzed and he started me in the process of going to pain management doctors, because they had different ways to be able to treat it to keep you comfortable and have a good life. But one of the things that I've learned from that journey is you've got to find out why pain management doctor that knows how to do the injections and put the needles, back spots where they move to put the steroids so that you can live a comfortable life. 

Jayson:

You and I talked a little bit before we recorded many people that are diagnosed with either non radiographic or as you were Ankylosing Spondylitis will take a biologic, but you were not able to do that tell a little bit about what happened there. 

Cary:

Now Actually, I never was allowed to do biologics because kidney failure prevents you from doing biologics. So I've had to cope around it without any form of biologics, which I have always wished I could, I understand you can get a lot of relief from them. 

Jayson:

Again, this is what makes this disease so difficult is that all of us deal with these symptoms completely different, and what affects one person, another person may have no issues with at all and that from a patient standpoint, it's very frustrating. 

Cary:

It is and the other frustration with ankylosing spondylitis is there's nobody has ever put together a real comprehensive list of all of the peripheral illnesses that you have to deal with sometimes with this disease. And so you go through the process of living with this disease, and every time you turn around, they're giving you a new diagnosis of something else. It's a problem.

Jayson:

Well, and you know, I'm not really sure if I...]]>******************************ShowTranscript*********************

Jayson:

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm really excited because part of what I want to do with this show is bring people's stories to all of you listeners. And I do that by interviewing people that have Ankylosing Spondylitis or non radiographic. And today, I've got a really great guest. I've got Cary King on and Cary has been dealing with Ankylosing Spondylitis. Oh, geez, most of his life and was diagnosed about 12 years or so ago in his late 40s. And has had a interesting journey that I thought was really great to share with everybody. And with that said, Cary, how are you doing today? 

Cary:

I'm doing fine. How are you today, Jayson?

Jayson:

Great, I really appreciate the time to come on and talk with all the listeners to share your story about your journey with Ankylosing Spondylitis. What I'd like you to do is kind of take us back to what it was like for you before the diagnosis, what led you up to finally getting that diagnosis? 

Cary:

Sure. I actually started on NSAIDs when I was in my teens, when they came out with them, actually, before that I was on Feldene and to cope with arthritic pain, and they could not figure out why I had arthritic pain at that age. So I lived on NSAIDs all the way up till I was about 46 years old and at that point, they took me off the NSAIDs because I had been diagnosed with kidney failure due to some nerve damage from my spine and that's when I got the diagnosis, too. But I had ankylosing spondylitis, and what caused us to become aware of that is once they took me off of it and said two weeks later, I had reached two feet to get a telephone while I was standing and the phone was ringing and I ended up on the floor for three hours and then the bed for three days until I went to the neurological surgeon in Nashville, Tennessee at the time, I was living in Owensboro, Kentucky, and then a man, he diagnosed me with ankylosing spondylitis and said that if he touched me in any way with surgery, I would really have a paralyzed and he started me in the process of going to pain management doctors, because they had different ways to be able to treat it to keep you comfortable and have a good life. But one of the things that I've learned from that journey is you've got to find out why pain management doctor that knows how to do the injections and put the needles, back spots where they move to put the steroids so that you can live a comfortable life. 

Jayson:

You and I talked a little bit before we recorded many people that are diagnosed with either non radiographic or as you were Ankylosing Spondylitis will take a biologic, but you were not able to do that tell a little bit about what happened there. 

Cary:

Now Actually, I never was allowed to do biologics because kidney failure prevents you from doing biologics. So I've had to cope around it without any form of biologics, which I have always wished I could, I understand you can get a lot of relief from them. 

Jayson:

Again, this is what makes this disease so difficult is that all of us deal with these symptoms completely different, and what affects one person, another person may have no issues with at all and that from a patient standpoint, it's very frustrating. 

Cary:

It is and the other frustration with ankylosing spondylitis is there's nobody has ever put together a real comprehensive list of all of the peripheral illnesses that you have to deal with sometimes with this disease. And so you go through the process of living with this disease, and every time you turn around, they're giving you a new diagnosis of something else. It's a problem.

Jayson:

Well, and you know, I'm not really sure if I think we keep discovering new peripheral issues that this disease kicks out. When I was diagnosed, it was 1984 a completely different time. What I was told initially about Ankylosing Spondylitis and its not the doctors fault is what he was taught, has now changed dramatically and there's so many new pieces to learn about whether it be nerve issues, eye issues, you know, organ issues, they all come into play and with my last episode, the one I did right before you Cary, if you take Ankylosing Spondylitis on a spectrum, and also the non radiographic spectrum of disease, they're probably one long you know, continuum of the disease and using the term axial spondyloarthritis going forward is probably the more appropriate term.  You and I may have at one point, had lesser issues when we would be diagnosed as non radiographic and its progressed to a point where you and I, as patients with Ankylosing Spondylitis are dealing with a whole different set of issues. When you add in that fusing, so it's really an amazing disease and an amazing time to be learning about this. Now with that, you've been dealing with this now for over a decade, when you first got the diagnosis for Ankylosing Spondylitis, you had your kidney issues, it sounds like that prevented certain medications. You deal heavily with a pain management doctor, I don't. So all the things you talk about are new to me. Tell us a little bit about what happens when you go to a pain management Doctor, what do what do they help you with? And how do they work with you to control it?

Cary:

Well, they can control it through series of medications that they can give you injectables like steroid injections to places where, for example, the buildup is so bad that it is putting pressure on your nerves, si joints etc. In fact, my SI joint is nearly gone, it's deteriorated so bad at this point, you also deal with what they called I think it's called radial nerve burning, where they burn the nerves off of the fork on the back of your spine. And that controls a lot of the pain. If they know how to do it and the tool was the right place. The injectables are the exact same way, if you've got a doctor that doesn't know exactly where to put that needle, you're not going to get a good benefit from it. So I've actually been through four main pain management doctors until I found one that works right for me, that was my struggle for five years, they had been so heavily on narcotics that I couldn't even function. And that's part of the reason why I ended up having to be retired from work, because I couldn't even figure out how to pick up the telephone. They have me so doped up. And when I came to this doctor that I'm going to now who has become my living hero, the first thing he asked me was what are you seeking to accomplish out of working with me and I said, how ever you can manage this pain and get me off of all of these narcotics because I don't have a life and I want to live. I haven't slept in five years and I want to be able to sleep. It didn't take him long and he helped me work to get off of those narcotics and for the most part, I had gone from taking morphine and dilaudid on a 12 hour cycles and hydrocodone the maximum doses every four hours and heavy muscle relaxers like Soma compound 350 milligrams, they had me on Ambien, and they have me on buprenorphine pain patch which is a seven day delivery systems where you have to wear a patch for seven days and change it every seven days. In any event that was creating a situation where I couldn't even have a daily life if you will, was not living out put it through that way. And this doctor has actually gotten me downs where I take 50 milligrams of Tramadol at bedtime. Most days that's all I take at bedtime I'm still gonna be buprenorphine patch and aside from that he took me off the heavy muscle relaxer and put me on a mild dose of calcium and been six milligram does that help my back muscles relax during the night so that I have a better day the next day. And by having gotten me off of all of that I think that's created the situation we're actually somewhere between seven and eight hours overnight.

Jayson:

Oh nice!

Cary:

Actually the only real problem with that is the past late to sound I don't move that it takes me a while to get out of the bed in the morning. But I found the motion flat. I found the motion platform helps me to get set up in the bay. And once I'm there I can get out of the day. 

Jayson:

Yes, it's always something with as if you went on one side, you're gonna pay for it a little bit on the other side. You just got to figure out if it's worth it or not. 

Cary:

Yes, if somebody out there knows a good bit let me know because I've actually spent $7,000 on beds over the last six years and there's not one I've come across yet that is very accommodating to this and I'm not sure that there is one but it's such a weird thing with mattresses. 

Jayson:

I ended up, everybody kept saying you need a foam, you need a foam you need a foam. So my parents had a couple of those various foam mattresses, you know the memory foam in their house. So I went over and slept on one just to see if I'd like it or not and it was okay but the way my back is I'm a side sleeper most of the time and what I found made the difference. I ended up buying an okay mattress it's not a memory foam. It's more of what they would call a pillow top type mattress. And it's worked out fantastic for me, but I also bought one of those adjustable bed frames and I use that on occasion. There's a setting on that called zero gravity. 

Cary:

Yes, sir. 

Jayson:

That helps a little bit. None of it is great. But it helps a little bit. Yeah, I'm with Yeah, that mattress is a really strange thing. 

Cary:

I'll tell you the best that I ever found to sleep on is a latex cord mattress if you're not allergic to latex. The only problem comes with that in my situation is I live alone and I can't lift the mattress to change the sheets. So its actually become my guest bedroom bed. 

Jayson:

Yeah, I can imagine if that's kind of latex core, that buggered be heavy.

Cary:

It weighs a ton. It takes three people to move it. So what I ended up what I've got now is a memory foam Serta, it's called Serta iComfort. 

Jayson:

Okay, 

Cary:

and that's what I'm using and it's a good mattress. But the problem is the memory foam mattresses, you tend to sink down into them, and you get in this hole and then you can't turn it over. If you're you know restricted on your movement like I am, you can't, you find you can't turn over. And that's what my “can’t understand”. 

Jayson:

I don't know, whose makes the mattress that my parents have. It was comfortable, it wasn't that I disliked it. And I only slept on it for one night. So it's kind of hard to make a valuation after only one night. 

Cary:

Yeah, 

Jayson:

but it wasn't bad. It wasn't great, either. It was just okay. You know, it's, it was just a mattress. But I know I could do episodes on mattresses and construction and choices. Because that's one of the main things I see people ask about all the time is, I need a mattress recommendation. Mine's killing me. 

Cary:

Yeah. And and, you know, I don't know that there is one single mattress out there that would help anybody. It's just part of coping with a disease, you know, it, there's just nothing that's actually 100% comfortable. So you just got to kind of find the best ways to get through your life to minimize that. So you can have a quality of life. 

Jayson:

Yeah. Now one thing I wanted to ask you, and this is more out of curiosity. There's so many of us that have this disease that live up north and we all think about, man, it'd be great to go down to a warm climate to help with alleviating some of the pain. You're in Georgia. Georgia is known for having high humidity. How does that affect you? 

Cary:

The humidity, if you want to live in a hot climate, find one that's hot and dry. I think that was helped more than anything, because humidity changes are when I noticed the most flare up with it. It's where I end up having the most pain and the base tone. 

Jayson:

Okay 

Cary:

If the humidity makes a massive change or if it's extremely hot, then I'm miserable. A dry hot is great! 

Jayson:

I spent 10 years, almost 10 years in Arizona, and it was a hot, dry heat. And I tell everybody, and it wasn't just Phoenix being there, it was when I would go to Sedona it was when I go to anywhere, that dry climate really was fantastic. For me, it just made all the difference in the world. 

Cary:

But see, I’ll tell you another thing that I deal with as a peripheral to this disease, I'm actually a lung failure. Because of it, I have what's called an elevated diaphragm and my right lung is paralyzed third lobe of the right lung that's just black, it's completely non-functioning whatsoever. And then my left lung doesn't function exactly correctly because of the beginnings of nerve damage to it. So one of the things that makes life very difficult with regard to the humidity is the breathing. And I do better when I'm in hotter, drier climates on the breathing as well. 

Jayson:

Interesting, being that I'm in Michigan, everybody always says oh, I want to retire and go to Florida and I've not spent enough time in Florida to know how the humidity would affect me like if I lived there during the warm season. But I do know what the warm season in Arizona is like and for me, like I said last time I was in Arizona, I was in Sedona with my ex wife and we did a four mile hike, which doesn't sound like much, but it was up Bell Rock, which is a mountain Bell Mountain or whatever they call it and I walk with a cane because I have nerve damage from my left hip replacement, I have a drop foot. So when I got two miles up the trail up the side of the mountain with my cane people were looking at me trying to figure out how the heck I had gotten up that high. It's the lack of humidity. 

Cary:

And you don't want to live in Florida because it's surrounded on three sides by water. I can tell you with hot humid in the summertime down there. 

Jayson:

Yeah, it's it. The humidity, I think would just absolutely kill me.

Cary:

Then I think humidity is the worst thing that we can deal with.

Jayson:

Yeah, that that makes a lot of sense and, and answers. I wondered, I always wonder when I talk to somebody that's in a climate, like I said, how that affects you because there's so many people that asked that, and that's a question I it's great to have you be able to answer that for the listener. 

Cary:

Yes, and I lived 10 years in Kentucky so that in fact, that's where I was diagnosed with this disease and where I lived in Kentucky. The humidity is similar, but it's not quite as bad as it is down here. The only problem is and in that part of Kentucky where I live the temperatures in the winter time, they're very damp, wet, cold temperatures, and it can get colder than normal Alaska, there have been 23 or 23 degrees below 0 when I was there.

Jayson:

And that's in Kentucky?

Cary:

Yeah. 

Jayson:

I didn't think it got that cold there. That's, that's amazing to hear.

Cary:

But it's because of the town where I live being surrounded on three sides by water, we get like effects nose and everything like that, because of the fact that the Ohio River hooks the way it does around the town where I live. 

Jayson:

Okay, interesting. Now, one of the things I wanted to bring in and talk about, is you and I discussed a little bit earlier is keeping up as best you can, keeping a positive mental attitude to allow yourself to keep pushing forward, but keep putting one foot in front of the other and go forward. And in listening to you and your story, you've had a series of events that would crush a lot of people, and you've overcome those. And I'd love to hear you tell the listeners a little bit about what you went through and how you overcame that. 

Cary:

Sure, with the crushing part of it, it's every time I get a new diagnosis, you know, I mean, kidney failure, my bladder doesn't function, my lungs are failing. That was the beginning of heart failure issues. Every time I've been given one of those, it just kind of takes me down six steps. And at the very beginning of this, when I started receiving diagnosis, I had a really good friend who was a business psychologist, he had a master's degree in it. And I was living in Kentucky, like I said at the time, and I made a trip down here, because this is where he lived at the time, and spent a weekend with him talking about how to cope with it. And the big thing that I learned from him is that if you can learn how to compartmentalize the illnesses and push them away, except when you're going to the doctor and maintain whatever it takes to keep your health good on whatever ailments that you have, then you're focusing on doing what you're doing, but not paying attention to what caused it then you can get beyond some of the emotionality of it and it helps me keep a more positive into and like you say keep pushing forward. And that's pretty much how I get through it. I belong to a group on Facebook Living with Ankylosing Spondylitis. If you don't know that join it is very helpful. But a lot of people that I see on there are at the beginning stages, and they're figuring out that they lay out of work for medical leaves, because they're not able to, and then they start figuring out, I'm not sure I'll ever be able to go back to work. And it's hard for me to see people hurting. And this, this is you given me this offer gave me an opportunity to share my experience on how to cope with it. And I hope that other people can learn from that and begin to have a happier life. I spend a lot of my time trying to encourage people to be able to compartmentalize so that they can focus on living and enjoying life rather than sitting and waiting for you. 

Jayson:

I think that's a really great way to look at it. Because I know for me, and going back to what you're saying, when it finally came time when I said I just couldn’t work anymore. That's an extremely hard decision and as a guy, I found my entire self worth was tied up in my ability to work and bring home a paycheck. And once that was removed, that was really kind of a crushing thing for me to deal with. And it took going and talking to a professional therapist, to help to overcome some of that because the first two weeks I was out of work, you know, as I went on disability, that was great. It was kind of like a vacation after that. Realizing that, okay, it's Monday, and I'm not headed back into work after my vacation. It's Tuesday, it's Thursday, its Friday, Saturday, which became a very hard thing to deal with. And I'm three years into the disability now. I guess it's been it's really just within the last probably a year that I've been able to really truly accept it and not mourn my past life. My pre disability life in a lot of it has been this...]]>a5f056ac-31bf-4b99-8c51-cbc2e9253a0cSun, 27 Sep 2020 09:00:00 -040036:04falsefull6969Are We Looking At This Disease WrongHello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How's everybody doing today? This has been a fantastic week here in Michigan where I'm at the temperatures have pulled back a little bit. It's been actually cool, but not super wet. So the Ankylosing Spondylitis all feels pretty darn good. I know other people are starting to come into their summers as we had in our falls. So I hope everybody is doing well and and for those of you that are on the west coast of the United States dealing with all the fires, I really hope that you are doing well. And for anybody around the world has got fires or some natural issues, disasters going on. I hope everybody's just safe and able to just enjoy life as best you can. 

As you get going. I wanted to read a couple of really neat emails and a review that came in on the podcast. And this review was from England, from the United Kingdom, and it says,

“I've been enjoying this podcast for a few months now. It's been super informative and helpful to learn about how other people react to this disease and what their experiences are. Thanks for sharing.”

 Well, thank you, JoeGeorge in the United Kingdom. I appreciate hearing from you. And that's really fantastic. I appreciate the feedback. We're all a community here with ankylosing spondylitis, non-radiographic axial spondyloarthritis. You know, that whole axial spondyloarthritis umbrella. We're all in this together. We're all here to learn from each other and help from each other. And I really hope through the show, if somebody hears something and it helps them, get through the day, through the hour through the week, whatever, that they're better off for it. So I really enjoy getting this feedback from everybody that's listening. I also got an email from a young lady named Lydia, she wrote, 

“My name is Lydia and I'm from Ireland. I am 39 and was diagnosed with AS just before last Christmas. I am so glad I listened to your podcast and it made me feel less alone with this life changing condition. Thank you for the information and keep up the good work.” 

Well, Lydia, thank you for reaching out. Thank you for sharing a little bit about you and your diagnosis. I hope this finds you doing fantastic. And again, we're all here to learn from one another. So please don't hesitate to reach out to myself to reach out to anybody with questions or any concerns you're having regarding this. And we'll try to at least support you in the best way we can. Then I also got this email from a gentleman it also in the UK, and he wrote, 

“Hi, Jayson, I just want to tell you how awesome your podcast is. I was diagnosed very recently. And he says about two months ago with as in your podcast was quite helpful and understanding the basics of AS and what progression to expect in the future. He says I am fortunate to be relatively mild case compared to many horror stories that I've heard and I still have the option of taking biologics in my progression is not good. In that sense, I am really thinking about people like you and others that were diagnosed decades ago when NSAIDs were the only option. It's incredible to think that people went through so much pain with so little pharmacutical support goes on to say I guess it's even worse to think about people about 200 years ago would have gone through this their life with as with no medical support, and everyone thinking that they were simply lazy. It would be really amazing to look at the history of AS (I did do a episode on Ankylosing Spondylitis history. I'll have that in the show notes so that you can go back and listen to it. And I sent it off to him as well in an email response. So I hope he enjoys it finishes up and says), Thanks for doing the awesome job of creating the podcast.

Well, you know what, Jergas, you are so welcome. I'm glad you like it. I...]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How's everybody doing today? This has been a fantastic week here in Michigan where I'm at the temperatures have pulled back a little bit. It's been actually cool, but not super wet. So the Ankylosing Spondylitis all feels pretty darn good. I know other people are starting to come into their summers as we had in our falls. So I hope everybody is doing well and and for those of you that are on the west coast of the United States dealing with all the fires, I really hope that you are doing well. And for anybody around the world has got fires or some natural issues, disasters going on. I hope everybody's just safe and able to just enjoy life as best you can. 

As you get going. I wanted to read a couple of really neat emails and a review that came in on the podcast. And this review was from England, from the United Kingdom, and it says,

“I've been enjoying this podcast for a few months now. It's been super informative and helpful to learn about how other people react to this disease and what their experiences are. Thanks for sharing.”

 Well, thank you, JoeGeorge in the United Kingdom. I appreciate hearing from you. And that's really fantastic. I appreciate the feedback. We're all a community here with ankylosing spondylitis, non-radiographic axial spondyloarthritis. You know, that whole axial spondyloarthritis umbrella. We're all in this together. We're all here to learn from each other and help from each other. And I really hope through the show, if somebody hears something and it helps them, get through the day, through the hour through the week, whatever, that they're better off for it. So I really enjoy getting this feedback from everybody that's listening. I also got an email from a young lady named Lydia, she wrote, 

“My name is Lydia and I'm from Ireland. I am 39 and was diagnosed with AS just before last Christmas. I am so glad I listened to your podcast and it made me feel less alone with this life changing condition. Thank you for the information and keep up the good work.” 

Well, Lydia, thank you for reaching out. Thank you for sharing a little bit about you and your diagnosis. I hope this finds you doing fantastic. And again, we're all here to learn from one another. So please don't hesitate to reach out to myself to reach out to anybody with questions or any concerns you're having regarding this. And we'll try to at least support you in the best way we can. Then I also got this email from a gentleman it also in the UK, and he wrote, 

“Hi, Jayson, I just want to tell you how awesome your podcast is. I was diagnosed very recently. And he says about two months ago with as in your podcast was quite helpful and understanding the basics of AS and what progression to expect in the future. He says I am fortunate to be relatively mild case compared to many horror stories that I've heard and I still have the option of taking biologics in my progression is not good. In that sense, I am really thinking about people like you and others that were diagnosed decades ago when NSAIDs were the only option. It's incredible to think that people went through so much pain with so little pharmacutical support goes on to say I guess it's even worse to think about people about 200 years ago would have gone through this their life with as with no medical support, and everyone thinking that they were simply lazy. It would be really amazing to look at the history of AS (I did do a episode on Ankylosing Spondylitis history. I'll have that in the show notes so that you can go back and listen to it. And I sent it off to him as well in an email response. So I hope he enjoys it finishes up and says), Thanks for doing the awesome job of creating the podcast.

Well, you know what, Jergas, you are so welcome. I'm glad you like it. I really appreciate the link to the book you sent me. 

So anyway, let's get on to today's show. So today's show is about Axial Spondyloarthritis. For some of you that are new, you might hear that name and say I've not heard that before. I've only heard Ankylosing Spondylitis. For others, you'll say, why keep going to my doctor and telling them that I have Ankylosing Spondylitis? And they keep telling me “No you don't”. I have all the conditions I have all the symptoms, but they're not dealing with me. You know, I can't get this diagnosis of Ankylosing Spondylitis because they say I don't have any visible fusion or you know, damaged any of the joints. Well, maybe we're all looking at this wrong and there's been really a change in the last 20 years in the Rheumatology field. One of the things is, is the identification of what is known as non-radiographic axial spondyloarthritis. You know, that term gets thrown around a lot now and is fairly acceptable in the diagnosis of what you might have. But really, that term was just developed and coined in 2009 by ASIS, which is the Assessment of Spondyloarthritis International Society. Think about that non-radiographic axial spondyloarthritis. That term as recognition was just done in 2009, just 11 years ago as of the recording of this. That's amazing. It's just a very short time period ago. So maybe we're looking at this backwards. Maybe there is no Ankylosing Spondylitis and there is no non-radiographic, maybe there's just axial spondyloarthritis. And the progression of it is from the non-radiographic axial spondyloarthritis to the Ankylosing Spondylitis, maybe those two terms should be completely removed from the vocabulary, and everybody just has, if you think about it linear, everybody has axial spondyloarthritis. And you pick some point on there to say, this person is in this area, closer to the one area and this person is over here and this person is further along in the diagnosis. And maybe it's just one plane that we move along in this disease called axial spondyloarthritis and the term non-radiographic and Ankylosing Spondylitis should be thrown out. Maybe they're causing more confusion because we now have a system where once that term non-radiographic was coined medications in the insurance lexicon I have saved the United States, other parts of the world might be different. But in the United States now, there's medicines that are approved for Ankylosing Spondylitis, but they're not approved for non-radiographic. So, somebody comes along and as non-radiographic, the doctor wants him to get access to a certain medication. So they diagnosed him with something different like rheumatoid arthritis. So they can open up different medication avenues, maybe it should just be you can be treated across the board under the umbrella of axial spondyloarthritis regarding actually sponder arthritis as a whole, I found this right up by a doctor Atul Deodhar I butchered that. So anyway, I liked what he had to say he he goes on to say “I would take a step back and say that spondyloarthritis is a family of diseases and rheumatology as you know, although for all of the rheumatic diseases that we see in daily clinical practice, we try to group them to families with similar clinical manifestations, similar genetic backgrounds and so forth. Spondyloarthritis is a family of rheumatic diseases that have typical clinical features a typical clinical phenotype there is spinal involvement, there is peripheral involvement, synovitis and enthesitis. The spinal arthritis family also has involvement of the skin in the form of psoriasis, eye involvement in the form of uvitis and I write us and so forth. Genetically, these diseases have HLA-B27, which is the human leukocyte antigen b 27. As a common genetic background under the family of spondyloarthritis, we can divide that family into axial vers peripheral spondyloarthritis peripheral spondyloarthritis would have psoriatic arthritis and arthritis with inflammatory bowel disease. Axial Spondyloarthritis is divided into radiographic and non-radiographic axial spondyloarthritis. Radiographic Spondyloarthritis is when we have definitive changes of sacroilitis on the plane X ray” of the sacroiliac joints and non radiographic is if the changes of the sacroilitis are not that definitive, the Ankylosing Spondylitis that all of us have known for a very long Time is radiographic axial spondyloarthritis where the changes of sacroilitis are definitive on the plane X ray of the sacroiliac joint non radiographic axial spondyloarthritis is still part of the axial spondyloarthritis. But the changes of the sacroliac on plane X ray are not obvious or perhaps totally absent. That's the only difference between radiographic and non-radiographic is the degree of sacroiliac joint involvement on plain X ray. Dr. Deodhar goes on to say, as you rightly ease replying to a question from a doctor Sergio Schwartzman, who says Dr. Schwartzman says “Do you think that this is indeed an important differentiation with regard to the Natural History of the disease or with therapies?” And Dr. Deodhar says, “That's a very important question. as you rightly said, initially, the 2009 classification criteria by the ASIS group coined these terms and that was mainly done for clinical trials to get the homogeneous patients into a trial. In day to day practice these terms should not matter because as we all discuss later, the clinical presentation, the burden of the disease, the treatments, and the outcomes can be quite similar.” This is just fantastic to hear the doctor has talked about this. He goes on to say, “Of course, if you take the extreme ankylosing spondylitis where someone has bamboo spine, that would have a very different outcome, one can see that these are the two extremes of the same spectrum of the disease”. So in day-to-day practice, it shouldn't matter whether it is non-radiographic or radiographic as long as you're able to diagnose axial spondyloarthritis and treat those patients. That's the most important part of understanding the spectrum. And that's what I wanted to get at today is that the word I was trying to get to earlier in the show was spectrum. We're all on the same spectrum of the disease and going into a doctor and this is where I think doctors need to be updated on their knowledge as well as we're no longer saying you have Ankylosing Spondylitis or you have non-radiographic those really are terms that we kind of need to throw out in the day to day practice. You either diagnosed with axial spondyloarthritis, or you're not on the axial spondyloarthritis spectrum, you could be very mild with very few symptoms newly diagnosed, you could be in the middle where you're showing a lot of the symptoms, but you don't have any type of fusing issues with your spine and then you could be on the far right side of it, where you've got the bamboo spine, you progress through a whole number of diseases, but we're all the same disease. And I think that's going to be the key thing going forward. And where we really need to figure out working with groups like the Spondylitis Association of America, and the partner groups they have in all the other countries that they're no longer is a term called ankylosing spondylitis or non- radiographic, those are simply going to be items for research purposes in the day to day practice. Its do I have axial spondyloarthritis or do I not have axial spondyloarthritis? To me, that was just an amazing article and I have a link to it. That will be down in the show notes below. And it's a new article it's from May of 2020. And it says Understanding Non- radiographic Axial Spondyloarthritis. So again, there'll be a link to it below and with so many patients that will move from non-radiographic axial spondyloarthritis to Ankylosing Spondylitis as is currently the current terminology is, it's really important to understand the progression of non-radiographic axial spondyloarthritis. So, if you're not familiar, this is an article I found from Creaky Joints and I want to touch base on a couple things. We do know that “It takes people on average seven years to be diagnosed with non-radiographic axial spondyloarthritis”. They can be told they have all sorts of things from rheumatoid arthritis to fibromyalgia, to just a whole litany of diseases can be presented before they actually settle upon non-radiographic that can be possibly attributed to the doctors not really understanding of axial spondyloarthritis and how it breaks down or it can be just attributed to your symptoms and how they present themselves. All of it is part of this whole package of being diagnosed. And that length of diagnosis is because well the disease causes you know, the different symptoms to be telltale symptoms like back pain, there's no visible damage on the X rays, as I mentioned before, and that's where the term non-radiographic comes from. We know that this differs from the Ankylosing Spondylitis on the far end of the spectrum in that there is visible damage, as I mentioned previous and so it's easier for the doctor to pinpoint what's going on. But just because non-radiographic can't be seen on x rays, that doesn't mean your pain is diminished, and you have some milder form of the disease. Quite the contrary, you have just the same type of symptoms and disease play out. You just don't have that fusion showing, but you get all the pain. So you're very well aware that the pain doesn't diminish just because there's not fusing overall the disease is similar. As I said, you're going to have the pain, the fatigue, the stiffness, and the impact that it can have on your life is basically the same as what a person was. If diagnosed Ankylosing Spondylitis is going to have and again, the real difference lies in whether the damage incurred by the inflammation shows on x rays. It can also take up to 10 years for x rays to show damage from such inflammation. So doctors can also use the MRI to help make the non-radiographic axial spondyloarthritis diagnosis earlier that early diagnosis is important because if it has all that time to fester and build up in you that uncontrolled inflammation can affect as you know, heart, eyes, lungs, everything. So what you don't want to do is have that uncontrolled inflammation running wild in your system. We do know that with non radiographic it's not just an early stage, the belief pattern used to be that non radiographic was separate and not just an early stage of AS there's debate as to whether non-radiographic and AS you know, as I mentioned, are two separate diseases or are they one along that spectrum and the prevailing theory is that non-radiographic and AS on the same disease spectrum, as I mentioned previously, but having non-radiographic spondyloarthritis is not always a precursor that evolves into AS, as I said, about half of the people will develop AS with it. So the hard part what we don't know now is whose going to develop it, why did somebody develop it and this other person did not. Those are the things that we're really going to have to have the doctor’s study for us as we go forward. Biologics and everything are great, but behind the scenes, they need to be determining how it progresses, why it progresses. So you know, for instance, some patients may develop worsening inflammatory back pain or develop other symptoms like enthesitis, which is the inflammation of the sites where tendons and ligaments attach to the bone uveitis, which is inflammation of the eye or even inflammatory bowel disease. Some patients may go through periods of remission and relapse, doctors will monitor for pain and functionality and the daily activities and the presence of whether the symptoms seem to be coming back. Symptoms usually occur because there's inflammation of the tendons or joints as rheumatologists Paul Byrd and associate professor at St. George and Sutherland Clinical School in Sydney, “that inflammation lead to an apparent worsening of symptoms, but it may not lead to permanent symptoms that occur due to damage that can be seen on an X rays or MRIs”. So, again, you may get flares, they may be painful, they may be hurt, but they may not lead to damage. So, you may not actually progress on that spectrum from non-radiographic to axial spondyloarthritis you may not progress on that spectrum from non-radiographic to Ankylosing Spondylitis. One thing I found interesting is in the article they talked about can treatment for non-radiographic prevent disease progression. And the short answer is, we don't know more research is needed as the article says there's some preliminary research that suggests Yes, so it would be very cool if using biologics or some treatments similar that we're able to help prevent the actual movement down the spectrum to Ankylosing Spondylitis cut back on the inflammation you're having reduced the pain and hold the disease at bay. That would be fantastic. 

So far, much of the available research is focused on whether treatment prevents disease progression in With as more data is needed on non radiographic patients specifically, we need to better understand a How do non radiographic patients respond to treatment in terms of symptom management and quality of life and be whether that treatment prevents non radiographic from progressing or causing radiographic damage. So, at this point even though treatment for non radiographic axial sponder, arthritis and ankylosing spondylitis should be similar people with non radiographic may respond differently, generally less predictable to treatment with biologics such as TNF inhibitors than those with AS. Again, there's lots of research that's going to be coming out. It's really important that these companies get the support from people trying to use the medications, get the feedback they need, that you're keeping up with your doctors, letting them know what your symptoms are. That way they can continue to work on these medications and hopefully develop them and figure out what's going on inside of us from knowing what's going on inside to how do we stop at our control with going on inside this article will be linked in the show notes. It goes on to talk about a lot more of items like lifestyle changes, whether it be exercising regularly eating right, quitting smoking seems to be a big thing. So again, you can read further in the article, it'll be in the show notes. 

The other thing I'll have a link to is a website I came across and it is marked for us healthcare professionals only, but it's facts about axial spondyloarthritis. And it's an amazing website. It talks about the disease spectrum, the disease burden, identifying gender differences and resources for the doctors. I am going to suggest that now this website, just so you know, this website is created by Novartis. So be aware of that I would go so far as to suggest that everyone share this with their healthcare professional and if they start going off about well, you don't have as nope Look at this. I think I've got axial spondyloarthritis but in the spectrum of it, I'm just on the far say left hand side of it with non radiographic I haven't progressed to as So that's going to take a change in the doctor's thought processes. It's going to take a change in us as patients trying to figure out as we go through and trying to figure out what we have to make sure that we are absolutely using the correct terminology so that you don't confuse the doctor and then you don't get upset when the doctor misunderstands what you're really trying to get at. So I really hope everybody will take this to heart look at this and understand that I think we're working now under the umbrella of axial spondyloarthritis as the the understanding of this disease progresses, one of the things they mentioned is that at least]]>4d9dde8a-c817-468d-be94-5ea66f3cd43bSun, 20 Sep 2020 09:00:00 -040022:03falsefull6868I Am EnoughHello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I'm your host and I hope everybody is doing fantastic. I wanted to go over a couple of emails that I got. Both of them are really cool. The first one is from Alex Levine and Alex has a fitness channel and in the shownotes I’ll have a link to his website. And in it, he wrote to me, 

“Hi, Jayson, I just wanted to reach out and tell you that I enjoy the podcast. I have AS and I work as a personal trainer specializing in training others with AS. I just did an event with the Spondylitis Association of America, discussing health and fitness. It's nice to connect with others who are sharing similar experiences, keep on doing the good work.” 

And just as I said, I'll have a link to both Alex's website in the show notes, as well as his Facebook page where you can find that event that he did with the Spondylitis Association of America. It’s a very good watch. The second message that I got was from a listener in the Faroe Islands. I hadn't been overly familiar with this country. It's basically located right in between Norway and Iceland and is part of Denmark but it's also I think its own country is the way they they officially look at themselves. But anyway, it's called the Faroe Islands. And I had saw some downloads coming in from there and I was like, that is really cool. I got this short little email but it was really fantastic to get and it was from a gentleman name, I think I'm saying this right Terji Beder, yeah, I think is how you say it. And I apologize for butchering that. And it says,

“Greetings from the Faroe Islands. I just wanted to thank you for hosting this podcast. I feel like there's a lot of information, content missing on AS on the Internet, or really anywhere. This is a great contribution with great quality. I love how you can make so many episodes and still managed to keep the topics original and with not much repetition. Great work. Sincerely, Terji.

Thank you so much. It's listeniers like you and everybody else that I hear from that I do this. And I really again, I love hearing from everybody. So if you're out there, please send me messages. I'll most likely unless you tell me not to read them on the next episode I read and then I respond back to everybody. I really enjoy receiving all these messages. It's just fantastic. So with that said, let's do a couple of quick housekeeping things, please go to spondypodcast.com, where you can sign up for the newsletter or use the Contact feature to reach out to me. There's also a section in there where you can go to access if you want to get a Spondypodcast t shirt or a couple of other items that are used to help support the show, or even just going to buy me a coffee calm where you'll find a link on the website to help support the show. Everybody has done that so far. Thank you again so much and I really appreciate it. 

Now on to todays show. I received an email today that was a solicitation for a website I belong to, and the title of it was, You Are Enough. And I saw that and I looked at it and it said, being you is more than enough. And I started thinking about that, as you know, we have this chronic illness, this chronic disease. There's many, many times that we all look and say, why me, I miss what I could do. You know, I really am tired when I tried to clean the house for the day. I have done every one of those and so I'm not picking any one particular person. But I started thinking and I said, is that really fair to us? Nobody I've ever talked to with Ankylosing Spondylitis has ever said, I asked to get Ankylosing Spondylitis. It's like any disease that somebody has, It just is what it is. And you have to work to overcome and move around it. So I started thinking a little bit you know, they had a couple of...]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I'm your host and I hope everybody is doing fantastic. I wanted to go over a couple of emails that I got. Both of them are really cool. The first one is from Alex Levine and Alex has a fitness channel and in the shownotes I’ll have a link to his website. And in it, he wrote to me, 

“Hi, Jayson, I just wanted to reach out and tell you that I enjoy the podcast. I have AS and I work as a personal trainer specializing in training others with AS. I just did an event with the Spondylitis Association of America, discussing health and fitness. It's nice to connect with others who are sharing similar experiences, keep on doing the good work.” 

And just as I said, I'll have a link to both Alex's website in the show notes, as well as his Facebook page where you can find that event that he did with the Spondylitis Association of America. It’s a very good watch. The second message that I got was from a listener in the Faroe Islands. I hadn't been overly familiar with this country. It's basically located right in between Norway and Iceland and is part of Denmark but it's also I think its own country is the way they they officially look at themselves. But anyway, it's called the Faroe Islands. And I had saw some downloads coming in from there and I was like, that is really cool. I got this short little email but it was really fantastic to get and it was from a gentleman name, I think I'm saying this right Terji Beder, yeah, I think is how you say it. And I apologize for butchering that. And it says,

“Greetings from the Faroe Islands. I just wanted to thank you for hosting this podcast. I feel like there's a lot of information, content missing on AS on the Internet, or really anywhere. This is a great contribution with great quality. I love how you can make so many episodes and still managed to keep the topics original and with not much repetition. Great work. Sincerely, Terji.

Thank you so much. It's listeniers like you and everybody else that I hear from that I do this. And I really again, I love hearing from everybody. So if you're out there, please send me messages. I'll most likely unless you tell me not to read them on the next episode I read and then I respond back to everybody. I really enjoy receiving all these messages. It's just fantastic. So with that said, let's do a couple of quick housekeeping things, please go to spondypodcast.com, where you can sign up for the newsletter or use the Contact feature to reach out to me. There's also a section in there where you can go to access if you want to get a Spondypodcast t shirt or a couple of other items that are used to help support the show, or even just going to buy me a coffee calm where you'll find a link on the website to help support the show. Everybody has done that so far. Thank you again so much and I really appreciate it. 

Now on to todays show. I received an email today that was a solicitation for a website I belong to, and the title of it was, You Are Enough. And I saw that and I looked at it and it said, being you is more than enough. And I started thinking about that, as you know, we have this chronic illness, this chronic disease. There's many, many times that we all look and say, why me, I miss what I could do. You know, I really am tired when I tried to clean the house for the day. I have done every one of those and so I'm not picking any one particular person. But I started thinking and I said, is that really fair to us? Nobody I've ever talked to with Ankylosing Spondylitis has ever said, I asked to get Ankylosing Spondylitis. It's like any disease that somebody has, It just is what it is. And you have to work to overcome and move around it. So I started thinking a little bit you know, they had a couple of quotes that I thought were really cool. In this website is myspondylitisteam.com. I'll have a link in the show notes and after years of feeling like I need to be better, stronger, healthier and in control, I now know I am enough and that was done kind of anonymously by a member of one of the spondylitis teams. And I started thinking about that. And I said, you know, there's really a lot of truth to that and they started kind of looking around and there's a website, the autoimmuneinstitute.org. They had a interesting kind of take on this of coping with a chronic illness. And they started off by writing, when your chronic illness has put you through the wringer in terms of doctor and hospital visits, lab tests, imaging, medications and other treatments. It's only natural to feel defeated. And that I think is even compounded for many of us in the Axial Spondyloarthritis community. Because somebody might go through the whole rigor as the article says, and still never be diagnosed. They may walk away with a doctor saying, I'm not sure what you have or it might be fibro or it might be this or the one that really gets to me is, “I don't see any inflammation or fusing in your x rays, so no, you don't have Ankylosing Spondylitis?” Well, that's true. You probably don't have Ankylosing Spondylitis. What you may very well have is Non-radiographic Axial Spondyloarthritis, where you have all of the pain, the stiffness, everything, you just don't have any shown fusing. And for some reason, that seems to get looked over quite a bit. And I hope as more and more people hear the shows, and are able to better advocates for themselves, they're better able to lead doctors to say, you know, I never thought of non-radiographic axial spondyloarthritis. Let's do a little more digging, and you end up with a diagnosis where you can finally get a treatment plan that is best for you. The article goes on to say all of us have been there at some point when you almost want to throw your hands in the air and let the quicksand You wonder, I've been there and spent years attempting to manage the symptoms on my own, we're getting sicker and sicker. The author says, “I was grieving for the health I used to have, unsure of what to do.” So the author is really talking about what could be applicable to any of us, as we deal with these chronic illnesses in this case, Axial Spondyloarthritis, we all look for the remedy, can we fix it? You know, I see everything out there from, well, can I just take supplements? Can I just eat healthy? Can I just you know, skip all medications and only take them when they're applicable to my particular flare time or whatever? There’s always an outlier that that works for them. And I occasionally see them come on to the different forums and say, well, I did this so you can do this, treating this disease is kind of a one size fits all and that's really a mistake. It doesn't work that way. You have to find find what works best for you. I personally am a fan of biologics; I think they've helped me tremendously. Not everybody else is, if you choose not to take them, that's entirely up to you. And you are absolutely within your rights as a patient to choose what you do or don't take. I will never say you're wrong for your particular views. But what I'll also do is tell you not to tell you that your views are applicable to what everybody else should believe. So just remember, as you move through these chronic illnesses, you want to look at what's best for you and understand, you know, we're all different in the way we approach the treatment of this disease. We're not alone. We're all in this together. So it's as the author goes on to, to discuss. “It's an odd mental space to be in, hoping you're suddenly going to get better. We'll either prtending nothing is wrong, or deciding your life is over and you'll die young.”

You want to remember these few things, you don't know everything. And I don't say that in a bad way. I don't know everything. I've never met anybody that knows everything. No matter what challenges you're experiencing in your illness, there's always something out there. There's always a community, doctor, a therapist, something that you have not tapped into yet, maybe you don't have the insurance if you're in the United States or in any country. And until you get that insurance in place, you're not able to tap into some particular resource. But once you get it, then your best bet is to tap into that resource and take full advantage of all it can do to help you. So how you perceive your situation is a direct result of what you know. So when you start to challenge what you know, asking why and how at every intersection, new worlds will open up and that's really true and that you know. You might have your mind dead set that I'm not going to take biologics because they cause cancer. I see a lot of people say this, that they do do this or they do that. And we always say, No, those are potential side effects. New research has also shown that they don't do this or they don't do that, unless you meet certain unique conditions, have certain family medical histories. And I'm using biologics just because that's the simple one for me to recall right off the bat. But that's really applicable to all medications. So you might be adverse to some or all of them. And you find out in talking with people that they've had really good responses to them, and there's far more positive than negatives and you change your mind and say, I'll try this might be somebody like me who doesn't eat the best and who I really need to eat much better and I need to open myself up to and not be so let's face it so lazy to not cook the way I need to be and not fall back on the easy foods that I eat. They taste good for a reason, because they're generally bad for you. So, just realize you're also not alone. You know, whether you're running the diagnosis marathon, trying to get all the doctors to agree as to what's going on with you trying to juggle a complex set of symptoms. There's a community of us all out there who have situations that are similar to yours. And we've all probably been where you're at now as you move through the diagnosis process or the early stages of the disease. And, again, well, we're all going to be different. 

We can all bring some perspective to what you're dealing with and at least be empathetic and understanding to what you're dealing with. You know, we all feel alone at times. But we can either experience this loneliness and isolation or in unity. It's a matter of accessing these connections. And for whatever reason, Ankylosing Spondylitis is a very easy disease to become lonely with, to isolate yourself with, I've done it. In a lot of cases, I'm still doing it. And I encourage you get out, be involved, you might not be able to go out three or four nights a week, you might only be able to go out one night a week, and then you have to take the next five or six, seven nights to recover from that, that's fine. Take that one night out, enjoy yourself, don't overdo it, but enjoy yourself. And then you cannot be so isolated, you can be accessible to other people and other people can be accessible to you. And you can keep that connection going. You can accept your current situation without giving up and that's something that really took me a long time to come to terms with. Everybody's in various stages of accepting this disease. Accepting is allowing yourself to be where you are, even if that place is dark. This is how I feel and I'm dealing with it the best I can are two things that you're entirely allowed to say, experience, and feel when you're not craving the life you used to have, or resigning yourself to a future of pain and discomfort, you'll be better able to take small steps forward, and really is the author indicates that's what it is. Take that small step forward, that little baby step to move each. Maybe it's each day you do one thing different. Maybe it's each month you do one thing different, whatever the timeframe is for you try something different to come out of your shell, to be more outgoing with others to interact with others, and not feel so isolated, not feel so alone. All of that's important for your mental health and for you to be the best person you can be. And that doesn't matter whether you're single, married in a relationship, whatever. Isolation can be very damaging to you to relationships. So I encourage you to please make sure whatever the timeframe is to reach out and interact with people. 

They did a great job and five things to do when you feel like giving up. And I'll go through these, 

Number One, Find Joy, you know, go on to say it can seem impossible to remember what it's like to feel good, I can certainly understand that. And besides the pain and other debilitating issues, you're under constant pressure by the world around you and yourself to get better. You might have a spouse that doesn't understand or doesn't show any desire to understand, parents, employment, it's all out there that say, well just take some aspirin and you'll feel better because they have no clue as to what we're dealing with at any given time. So there's things you can do to try and remove some of the stress of being sick, which is enough, you know, to knock you down at any given time, but you can try to move your mind into a more positive space. Now, that’s not just someone that tells you well think positive, be positive, no, but if you try to think of a positive thing any given day, it can help as you move forward. So weaving these falling practices into your daily life can regenerate a sense of hope and peace. Resurface a happy memory, think about something that you did in the past that really made you happy, maybe was an event you like to do a television show you like to watch a person you like to talk to. If it's any one of those and you haven't done any of it, you know, if you haven't watched that show in a while, haven't talked to that person. Do it, pick up the phone and call them. Maybe you'll find out that person hasn't called you because they've kind of been afraid and not sure how to approach your illness. Call them up, talk with them. Talk about the illness; don't talk about the illness, but talk to them. Let them know you're still alive. Do something creative and tactile. Maybe you like to work with wood. Maybe you like to just go for a walk. I started doing this podcast. There's all sorts of different things paint, paint, a building, paint a picture, your choice. I don't care. Do whatever makes you happy, could be just doing a puzzle, which is great because we all talk about dealing with the brain fog. Puzzles are great ways to keep that brain thinking,. Keep a gratitude jar, doing so write down one good thing that's happened to you during the day, the week, whatever, put it in there and, you know, keep focusing on what those one good things are, each day or each week. And then occasionally, when you sit down to watch TV, or that jar out in your lap, and read through the different things that you were grateful for. So great, very simple way to just remind yourself of the things that you do good at any given day. Find a meditation practice that works for you. This is big. I've discussed it before I do Transcendental Meditation, doesn't mean that's right for everybody. I am a person that would have easily told you meditation as a joke, but since I had done that, I think it's a fantastic practice. There's lots of different it available on YouTube. So do some meditation, the worst it's going to do is not help you and you move on, it's not going to hurt you the best it's going to do is you find a new practice to help relieve some of your everyday stress. Then finally engage in acts of kindness. You know, if you're walking out to your car and you see a senior, we're gonna put groceries in their car, a mom with kids, a disabled person offered to help them, you going out to grocery stores example and you see somebody self bagging their groceries, offer to help them even as simple as somebody is trying to get something off of a shelf, offered, help them if you can. It's little acts of kindness that going to make you feel better, and be helpful to that person in need, and hopefully make them feel better. 

Number Two, Keep a Symptom Journal. This is a powerful tool that can help you recognize patterns in your health. And we've talked about this. There's the app for your phone called Chronic Insights. And I did an interview with the creator of that app and his name is James Allen. James has Ankylosing Spondylitis. So he's very aware of what we all go through. This app allows you to go in, enter in your condition, enter in, how you're feeling that day where the pain is, and turns out to be a great way to then share that with your doctor to give them a better overall understanding of how you're doing at any given time. On top of the journal, you can enter in if it's just paper, you can put you know, how do you feel? When did the pain or the issue you're dealing with start? Where were you when it started? Was there a certain thing you were doing that maybe triggered it to start and all those can be in there to, again, track your progress on any given day, week month, and see how you feel through the year. 

Number Three, Partner Up. This one is really easy to do now with social media, find 2,3,4 people that have Ankylosing Spondylitis, or a condition that you're dealing with and should have a message, check in with them every day, ask them to check in with you just to make sure everybody is doing well. As I've done the show, and I've talked with people, all my guests, I don't check in with regularly. But there are some that I check in more often than others. And it's really great. I bounce ideas off of them; they bounce ideas off of me. And we sometimes just check in our venting spot to listen to them feeling like having a bad day and they want to tell you how bad they're feeling. And they just need somebody to listen, that's not their spouse, because their spouse maybe is sick of hearing about it. So there's a lot of ways that you can be there for somebody else. You know, just try reaching out to somebody privately and see if you guys can connect and help each other out. You know, and there's all sorts of groups as you know on Facebook and Instagram and and all over the place. Shoot me a message through Facebook or Instagram and you know, again, I'm happy to hear from you. I'm happy to be there if you need some help. 

Number Four, Share Your Story. This is a great thing to do. You know whether it be sharing your story via coming on to The Ankylosing Spondylitis Podcast to talk about your Ankylosing Spondylitis or non radiographic journey, whether it be going to a website like ankylosingspondylitis.net and in the section they have there you can enter in your biography to talk about what you've dealt with. Maybe it's starting a blog; there are all sorts of things that are available to you to share your story about your journey with axial spondyloarthritis. Any part of sharing can be tough for some folks, just by stepping out sharing it, whether it be on a podcast like this, maybe even creating your own podcast on on a topic. All of it helps you and helps the people that listen to you. So don't hesitate to to step out of your comfort zone, do something that you aren't familiar with. If you want to start a podcast, let me know, I'll send you the resources of the different tools that I think will help get you up and running really quick. And you'd be surprised there's a lot of them that are free. So...]]>d6bab1a1-4531-4374-a4ef-57aa07c04f81Sun, 13 Sep 2020 09:00:00 -040023:41falsefull6767Now on to todays show. I received an email today that was a solicitation for a website I belong to, and the title of it was, You Are Enough. And I saw that and I looked at it and it said, being you is more than enough. And I started thinking about that, as you know, we have this chronic illness, this chronic disease. There's many, many times that we all look and say, why me, I miss what I could do. You know, I really am tired when I tried to clean the house for the day. I have done every one of those and so I'm not picking any one particular person. But I started thinking and I said, is that really fair to us? Nobody I've ever talked to with Ankylosing Spondylitis has ever said, I asked to get Ankylosing Spondylitis. It's like any disease that somebody has, It just is what it is. And you have to work to overcome and move around it.More Than Just Back PainHello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How is everyone doing? Here in Michigan where I'm located, summer's unfortunately coming to an end and we're moving into fall and for me and my Ankylosing Spondylitis, the storm systems that come through on a much more regular basis, the wet cold that's coming at the end of this month starting into the fall. That's really when my AS kind of goes off the charts and I get the most amount of pain. 

So how are all you doing? How is the weather affecting everybody else I'd love to hear? If you go to spondypodcast.com, you can send a message to me and I will reach out to you I've got one that I have to respond to now from a gentleman that does a lot of really good exercise videos that you can find online and I'll bring more to you on that in an upcoming episode. But outside of that, the great thing I've got is a couple of good bits of information. The show just hit the 97th country that the show has been downloaded in, and that country was Israel. Somebody from Israel downloaded a few episodes to listen to, so that's fantastic. And if that person listens to this show, I'd love it if you would go to spondypodcast.com and shoot me a message from the Contact section. I'd love to get to know who is there, and that goes for any country. If you're out there in Japan, South Korea, Malaysia, Australia, England, Ireland, Brazil, Peru, any of those countries where the show gets downloaded, please go to spondypodcast.com and not only sign up for the newsletter, but also go ahead and shoot me a message to let me know that you're listening that that would be great to hear from everybody. And I will respond to y'all. 

So let's get into today's message, and I do have a special announcement at the end of the show, too, that I'll tease right now but let's get into today's episode. And I want to talk to folks about basically Beyond Back Pain, Five Warning Signs That You Might Have Ankylosing Spondylitis. What got me thinking about this was that as I was moderating an Ankylosing Spondylitis forum that I deal with on Facebook had a lot of messages coming in lately saying, I think I have as I have all the symptoms of AS, I haven't been diagnosed yet I have my first rheumatology appointment coming up all sorts of different things like that. They have been coming in really fast and furious the last month or so and so I thought I would do an episode directed towards people that are just recently diagnosed, or are in the process of getting a diagnosis or even trying to get a diagnosis and these five items that we're going to touch on. Now, how do they apply to Ankylosing Spondylitis, but they also apply to for the most part non-radiographic axial spondyloarthritis. So, just remember, as you're going through the process of being diagnosed, if your doctor says to you, no, I don't think you have Ankylosing Spondylitis, I'm not seeing the fusion or the in creased amounts of inflammation in your x rays, you know, turn to the doctor and say, Alright, what about non-radiographic, I have all the pain, checkmark each box for all the pain, the symptoms, the hurt back, sore hips, whatever it might be, but you're not seeing the inflammation. So to me, that sounds like non-radiographic axial spondyloarthritis let them tell you that reason they think that it's not that because maybe it is and maybe they just didn't consider it. I hate to say it, maybe they're not 100% familiar with it. So you have to sometimes maybe help them to help you so they don't pass you off as something that it's not in you end up going down a trail that doesn't help you and just frustrates you and doesn't help do it. Is your medical situation, what we know and I like to always start off episodes as Ankylosing Spondylitis is a type of inflammatory arthritis that primarily affects your spine and hips. You know, it can affect anywhere in your body,...]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How is everyone doing? Here in Michigan where I'm located, summer's unfortunately coming to an end and we're moving into fall and for me and my Ankylosing Spondylitis, the storm systems that come through on a much more regular basis, the wet cold that's coming at the end of this month starting into the fall. That's really when my AS kind of goes off the charts and I get the most amount of pain. 

So how are all you doing? How is the weather affecting everybody else I'd love to hear? If you go to spondypodcast.com, you can send a message to me and I will reach out to you I've got one that I have to respond to now from a gentleman that does a lot of really good exercise videos that you can find online and I'll bring more to you on that in an upcoming episode. But outside of that, the great thing I've got is a couple of good bits of information. The show just hit the 97th country that the show has been downloaded in, and that country was Israel. Somebody from Israel downloaded a few episodes to listen to, so that's fantastic. And if that person listens to this show, I'd love it if you would go to spondypodcast.com and shoot me a message from the Contact section. I'd love to get to know who is there, and that goes for any country. If you're out there in Japan, South Korea, Malaysia, Australia, England, Ireland, Brazil, Peru, any of those countries where the show gets downloaded, please go to spondypodcast.com and not only sign up for the newsletter, but also go ahead and shoot me a message to let me know that you're listening that that would be great to hear from everybody. And I will respond to y'all. 

So let's get into today's message, and I do have a special announcement at the end of the show, too, that I'll tease right now but let's get into today's episode. And I want to talk to folks about basically Beyond Back Pain, Five Warning Signs That You Might Have Ankylosing Spondylitis. What got me thinking about this was that as I was moderating an Ankylosing Spondylitis forum that I deal with on Facebook had a lot of messages coming in lately saying, I think I have as I have all the symptoms of AS, I haven't been diagnosed yet I have my first rheumatology appointment coming up all sorts of different things like that. They have been coming in really fast and furious the last month or so and so I thought I would do an episode directed towards people that are just recently diagnosed, or are in the process of getting a diagnosis or even trying to get a diagnosis and these five items that we're going to touch on. Now, how do they apply to Ankylosing Spondylitis, but they also apply to for the most part non-radiographic axial spondyloarthritis. So, just remember, as you're going through the process of being diagnosed, if your doctor says to you, no, I don't think you have Ankylosing Spondylitis, I'm not seeing the fusion or the in creased amounts of inflammation in your x rays, you know, turn to the doctor and say, Alright, what about non-radiographic, I have all the pain, checkmark each box for all the pain, the symptoms, the hurt back, sore hips, whatever it might be, but you're not seeing the inflammation. So to me, that sounds like non-radiographic axial spondyloarthritis let them tell you that reason they think that it's not that because maybe it is and maybe they just didn't consider it. I hate to say it, maybe they're not 100% familiar with it. So you have to sometimes maybe help them to help you so they don't pass you off as something that it's not in you end up going down a trail that doesn't help you and just frustrates you and doesn't help do it. Is your medical situation, what we know and I like to always start off episodes as Ankylosing Spondylitis is a type of inflammatory arthritis that primarily affects your spine and hips. You know, it can affect anywhere in your body, but spine and hips are what it's known for. It's generally you get a sore back, and that's one of the areas where a lot of people that starts is their lower back. So back pain is a top, you know, medical complaint. It's also a leading cause of missed work, you know, you can't go to work because you can't, especially if you have a physical job. So according to the National Institute of Neurological Disorders and Stroke, virtually all adults will seek attention for back pain at some point in their lives. The American Chiropractic Association reports that Americans spend $50 billion a year on treating back pain. So when you add that up across the globe, can you imagine the amount of money and lost productivity associated with just back pain, it's got to be through the roof. We all know there are many causes for having low back pain, you pick something up wrong you stepped wrong, you fell wrong, you slept wrong, all of that and that is something that our bodies will eventually heal itself of, you know, there's some type of sudden trauma that your body can then correct. But what you should be aware, the back pain can also signal you know, a much more serious condition like Axial Spondyloarthritis and that's the term I like to use sometimes instead of Ankylosing Spondylitis. What I'm referring to both AS as well as non-radiographic. So if you hear me talk about axial spondyloarthritis it's generally because these conditions are applicable to both of the ultimate diagnosis. So as we said, what is AS well, unlike ordinary back pain, Ankylosing Spondylitis, you know, is not caused by any type of trauma to the spine. It's that inflammatory arthritis condition that is affecting the vertebrae in the spine and causes the eventual bamboo spine for Ankylosing Spondylitis or just the intense pain for non radiographic. So the most common symptoms that you run across are the flare ups of spinal pain and the stiffness that the stiff disc will sometimes go away. The longer you go into the morning as you, as you become more active, and then can come on real heavy at night once your activity level slows down for the day. But the disease can also affect other joints, as well as the eyes and intestines. I've said this in other episodes, for me, mine attacked the hips first when I was a young kid, mine took out my SI joints by the time I was 15 or so, my SI joints were basically fused. And by the time I had hit 23, I'd had a right and a left hip replacement, so it doesn't always start off in the spine. But that's where the bulk of it is. So that's where we're going to focus on today's discussion. So that you know, hey, that sore back I should go get that checked out. It's it's not just a muscular issue; it seems to be more of a mechanical issue. Also, you might get iritis, and I did an episode, did several episodes on iritis and I'll have them linked in the show notes, one of them with an ophthalmologist. And that's something very important. You can end up losing some or all of your vision for untreated iritis or recurring bouts of iritis that you don't take seriously or that just get out of control that can happen. So there's so many things to be aware of that this is really as you get going. It's a lifetime of learning. So in advanced AS you're going to get abnormal bone growth in the vertebrae, and that can cause the joints to fuse. So when that happens, if you were to stand next to me, I stand all hunched over. If you go to as_podcast on Instagram, which there's a link in The show notes you will see pictures of me standing up straight or as straight as I can stand up with my cane, because my lower backs fused. And I had a lot of bone growth over one of my hip replacements that's limited the mobility or movement of that hip. We're working on that right now. But, you know, there's only so much that can be done. So anyway, you'll get the, the fused vertebrae as a possibility the fused sacroiliac joints are a possibility depends on if you have non radiographic you're not going to have that fusion. Unfortunately, you will have all the pain that comes along with axial spondyloarthritis. So the same medications for the most part will help you out. And then, at some point, that non-radiographic may progress to Ankylosing Spondylitis. We don't know there's no way to tell you for sure if it will or won't. It's just something that that's why the doctor's appointments are so important because it's something you want to keep on top of on a very regular basis. 

So what are some of the warning signs? 

Number one, you have unexplained pain in your lower back. If you're waking up every morning and there's some stiffness that tends to go away, either with some use of nsaid's, or just the movement of being active for the day, getting up showering, whatever you do, getting ready for work, if it tends to lessen, but keeps coming back day after day after day, there might be a problem. Lower back pain for no apparent reason, you know, in young people is not typical. So when teens and young adults who complain of stiffness or pain and lower back or hips as they complain about that, they should probably be evaluated for axial spondyloarthritis by a rheumatologist. You know there's also the pain that can come from the sacred iliac joints, which is where the pelvis and the spine meet. All that's tied in so if you have a younger Childhood is complaining of that type of pain. Don't think that it's all just growing pains. That's what was done with me when I was a kid. It's not growing pains. Get them into a rheumatologist, it's well worth. Even if the rheumatologist says Nah, it's not anything major. It's better to be safe than sorry. There's new medications out now that these young kids can take that can result in them having a completely different life than when I was diagnosed, you know, 36 years ago and none of these medications existed. Get the child and get yourself in whomever. 

Number two, you have a family history of Ankylosing Spondylitis. You had a grandma and aunt and uncle, you know, a second cousin. Anybody or all of them had Ankylosing Spondylitis, then and you're now experiencing some of the symptoms. Get yourself to a doctor as fast as possible to have it evaluated. You know, there is a certain genetic marker that the doctors look for. Everybody knows about the HLA-B27. But there are other numerous markers they look at. So your family may carry one or more of these markers. So again, if you have a relative with either Ankylosing Spondylitis, psoriatic arthritis, or arthritis related to any inflammatory bowel disease, you may have inherited these genes that puts you at a greater risk for Ankylosing Spondylitis. So again, the key is, if you're having the pain, get into a doctor and start to have it evaluated. 

Number three, you're young and you have unexplained pain in the heels, joints or chest or instead of back pain. Some patients with Ankylosing Spondylitis or non-radiographic first experience pain in the heels pain and stiffness and other joints like your wrist, ankles, and some patients rib bones are affected at the point where they meet the spine. That one is extremely painful and can cause tightness in your chest. I know some people that thought they were having anxiety attacks, when in reality, they were having a flare of that particular area, and it was constricting on their chest, and it can make it hard to breathe. So, talk to your doctor. These are very important items to be addressed if they happen to you. 

Number four, your pain may come and go but it gradually moving up your spine and it's getting worse. Well, we know Ankylosing Spondylitis is a chronic and progressive disease. There are some medications now that can slow that progressiveness of it, in some cases, maybe even put into a remission. For some people, many people, you know, it just depends on how everybody's dealing with the meds. But that doesn't mean that it's going to go away. And it doesn't mean that if that medication gets it under control, that then you stop taking the medication. I see a lot of people say, well, once I start taking it and it works, then I can quit, right? No, you're going to stay on it. That's what's that's what's helping you so although exercise or pain medications may help temporarily, the disease may gradually worsen. That's what we mean that you hope for the remission, but it can get worse, symptoms may come and go, but they won't stop completely. Often the pain and the inflammation they'll spread from the low back up the spine and if left untreated, you know, your vertebrae can fuse together, causing the forward curvature which is what I have, or the humpback appearance, which is called and I'm gonna butcher this so I apologize but it's called kyphosis, I think is how you say that which is that little hump at the top of the shoulder. 

And finally, Number five, you get relief from your symptoms by taking NSAIDS. At first people with ankylosing spondylitis will get symptomatic relief from common you know, like over the counter type of anti inflammatory drugs such as ibuprofen and naproxen. These drugs are called nsaids. They do not alter the disease. They do not stop the progression of the disease. They simply give you temporary relief by lowering some of the out of control inflammation in your body. Remember that you're not controlling the disease by taking nsaids, you're simply buying yourself a little bit of time. If your doctors think of AS, they may prescribe more advanced medications, these drugs target specific parts of the immune system. There are immune system components called cytokines that play a central role in inflammation, to in particular tumor necrosis factors, alpha, TNF, and interleukin 10s, which are targeted by modern biologic therapies. So these drugs may actually slow the progression of the disease, the biologic medications, so stuff like Humira, Enbrel, Cosentyx, Taltz, the list goes on, when your doctor prescribes those and remember, we're all looking for that magic bullet. We want anything to try and take that pain away. And so, when a doctor prescribes you a biologic, it may not work. Be prepared for that. It's not the end of the world; you may have an adverse reaction to it like any medication can be. So all that means is just go on to the next one. You didn't fail the medication, the medication didn't fail you. The medication either works or it doesn't work. You just go on to the next one if it doesn't work, because there's so many out there. It took me three times to find one that finally worked. I was not responding to the anti TNF drugs like Enbrel and Humira. They put me on Cosentyx boom that was great. You may be the exact opposite, not respond to Cosentyx but have a great reaction to Humira, Enbrel, or Remicade, or whatever you're put on. So, there isn't a way unfortunately at this time to say which one of the biologics will respond best to. So it's really a hit or miss. You just got to keep trying until you find the one that works. 

And then finally, talk about kind of How is AS diagnosed? Well, as many of you know, you'll go into the doctor, they will talk with you about some of your symptoms, some of the items, you're encountering family history. And then at that point, generally they'll want to look at an X ray. If inflammation can be seen via the X ray, that can lead them to help make a diagnosis at that point. If there isn't enough information showing on the X ray, they may ask to do a MRI on you, and thereby look even deeper into your system to see what's going on. An X ray and an MRI might not show either. Then what do you do? That's when you have the discussion about non-radiographic axial spondyloarthritis. Doctor, I'm having the pain I'm having this symptom, my back hurts. My chest hurts, my heels hurt, my knees hurt, and my spine hurts whatever. And at that point, doc says will but you're not showing any inflammation or very little, or you're not showing any fusing, I should say. And you say, well, that, to me sounds like non-radiographic, and you help them to help you come to the diagnosis; it's going to be best for you. I really hope everybody gets into see a doctor, they get a good doctor that listens to them, and really is empathetic understanding and helps you get the correct diagnosis that you need. That's such a game changer to finally have the diagnosis and know that you can now put together a plan of attack on how to go after the non-radiographic or go after the Ankylosing Spondylitis instead of just being in this area where you don't know what's going on. And you're just constantly trying to figure out the case of what you're happening, where you're constantly trying to just survive the pain and figure out what is wrong in your body. 

So I hope everybody has a great day. The special announcement I told you about is over on buy me a coffee.com you can support The Ankylosing Spondylitis Podcast with donations or join as a member. And we had Sandra Clutterbuck join, she's from Australia. She's now going to be listed as a producer on the show in the show notes. So thank you, Sandra. I'm hoping that I can. I sent her an email, but I'm just waiting to hear back from her. And I hope she listened to the show enjoys it. And to everybody else out there that listens. Thank you so much. I really appreciate just everything I hear from you. And if you're in any of those far-flung countries, anywhere outside the United States or even in the United States, please go to spondypodcast.com and drop me a message. I really want to hear from everybody and know how you're doing what your story is, and look forward to maybe getting you on the show sometime to talk about your journey with getting diagnosed. So thank you and everybody have a wonderful week.

Producer – Sandra Clutterbuck

Healthline article that episode is based upon - https://www.healthline.com/health/ankylosing-spondylitis/warning-signs

Help support the show - https://www.buymeacoffee.com/ASpodcast

T-Shirts - https://teespring.com/stores/spondypodcast

Julie Caviezel:

Thank you for having me, Jayson.

Jayson Sacco:

I want to touch base on a couple things. You have Ankylosing Spondylitis and have been diagnosed, but you went through a long journey to get that diagnosis. Can you talk a little bit about that? So that I think it's like I said, I think it's really important for women To hear other's stories to know that they're not alone and that there's sometimes you have to be their own best advocate for this disease.

Julie Caviezel:

Yes, definitely. For me in particular, it was a long journey, and over 20 years of trying to find a doctor who would listen, and a lot of male doctors, especially even female, would just kind of dismiss me as being overthinking it. I heard my primary care doctor of yours said, you just think too much. You just need to you know, not not worry so much. I think it's all up in your head and I heard the, the phrase I think it's more psychological than physiological all your blood work looks great. There's nothing wrong with you. You're in perfect health and when you as a patient Place your trust in your doctor and you're seeking medical advice. And you keep hearing that over and over for years, it really starts to mess with your head and make you feel like there's something wrong with you even though you know in your heart of hearts, that it's not psychological. But you almost start believing them because they're the expert. They should know. Right? And I think it's really important for everyone and I would say women, especially to listen to our bodies, and don't be dismissed. Don't take no for an answer. If you feel in your gut that there's something wrong, keep pursuing it. And my parents call me a pitbull because I tend to be tenacious and very loyal and to the point where I would probably lay down my life for a friend And those are breed characteristics. And with that, I also tend to not give up. And, but there were times over the 20 some years where I felt like giving up and I did, I would for a little bit, whether it be like a few months or a year or so and then I'd kind of try to find another specialist and it just it took a long time. And it wasn't until my symptoms got really severe that I was taking more seriously. And I lucked out I go to really cool clinic up in Seattle, it's called the poly clinic, I highly recommend it. It's doctor owned, it's there's not a lot of bureaucracy, it's like a pure like they just really want to help people. It's kind of the best of the best. And that's where I have found my specialists cardiology dermatology because I've had melanoma. I do have very early stages of coronary artery disease. as well and so now my rheumatologist is there so? Yeah, I mean, it took finding him who he sat there and he saw my x rays after he ordered them which no other doctor had. which, to me the golden rule that I found out is when you're testing for abs, it's not just the blood test, your doctors are also supposed to order the X ray. And no other doctor had done the X ray. They'd only done the blood test and for me and my family, my mom has it and other people on her family habit. They all test positive for that mutation. I don't.

Jayson Sacco:

So your mom and others that have Ankylosing Spondylitis are HLA b 27 positive. Your...]]>Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm very excited to have on this guest this week. I think it's awesome to bring in fellow people with Ankylosing Spondylitis to not only hear their story, but also learn from them about what they're doing to deal with the pain deal with Ankylosing Spondylitis. And not feel so isolated and alone, like a lot of us can, because there's so few of us in the day to day life that you might meet. So, this guest I think she's really special. She has a Instagram page that we'll talk about in a little bit as well. But her name is Julie coversyl. Julie, welcome to the show.

Julie Caviezel:

Thank you for having me, Jayson.

Jayson Sacco:

I want to touch base on a couple things. You have Ankylosing Spondylitis and have been diagnosed, but you went through a long journey to get that diagnosis. Can you talk a little bit about that? So that I think it's like I said, I think it's really important for women To hear other's stories to know that they're not alone and that there's sometimes you have to be their own best advocate for this disease.

Julie Caviezel:

Yes, definitely. For me in particular, it was a long journey, and over 20 years of trying to find a doctor who would listen, and a lot of male doctors, especially even female, would just kind of dismiss me as being overthinking it. I heard my primary care doctor of yours said, you just think too much. You just need to you know, not not worry so much. I think it's all up in your head and I heard the, the phrase I think it's more psychological than physiological all your blood work looks great. There's nothing wrong with you. You're in perfect health and when you as a patient Place your trust in your doctor and you're seeking medical advice. And you keep hearing that over and over for years, it really starts to mess with your head and make you feel like there's something wrong with you even though you know in your heart of hearts, that it's not psychological. But you almost start believing them because they're the expert. They should know. Right? And I think it's really important for everyone and I would say women, especially to listen to our bodies, and don't be dismissed. Don't take no for an answer. If you feel in your gut that there's something wrong, keep pursuing it. And my parents call me a pitbull because I tend to be tenacious and very loyal and to the point where I would probably lay down my life for a friend And those are breed characteristics. And with that, I also tend to not give up. And, but there were times over the 20 some years where I felt like giving up and I did, I would for a little bit, whether it be like a few months or a year or so and then I'd kind of try to find another specialist and it just it took a long time. And it wasn't until my symptoms got really severe that I was taking more seriously. And I lucked out I go to really cool clinic up in Seattle, it's called the poly clinic, I highly recommend it. It's doctor owned, it's there's not a lot of bureaucracy, it's like a pure like they just really want to help people. It's kind of the best of the best. And that's where I have found my specialists cardiology dermatology because I've had melanoma. I do have very early stages of coronary artery disease. as well and so now my rheumatologist is there so? Yeah, I mean, it took finding him who he sat there and he saw my x rays after he ordered them which no other doctor had. which, to me the golden rule that I found out is when you're testing for abs, it's not just the blood test, your doctors are also supposed to order the X ray. And no other doctor had done the X ray. They'd only done the blood test and for me and my family, my mom has it and other people on her family habit. They all test positive for that mutation. I don't.

Jayson Sacco:

So your mom and others that have Ankylosing Spondylitis are HLA b 27 positive. Your blood work was coming back for you being negative, negative. 

Julie Caviezel:

Uh huh. 

Jayson Sacco:

Oh, okay. So hence the doctors start. As a woman, the doctors start not ordering x rays. 

Julie Caviezel:

Yep. 

Jayson Sacco:

See, that's really a disservice to you.

Julie Caviezel:

Oh, for sure. 

Jayson Sacco:

So, where did your pain start?

Julie Caviezel:

My neck early on, probably about 18 or 19 years old start maybe even younger than that. I couldn't, I noticed. Just working out I couldn't do sit ups like everyone else could it would hurt really badly. And I'd have to kind of cradle my neck and modify and that was at a pretty young age, and then it just kind of got worse and worse. I was told I had what looked like a C curve in my spine at one point by a chiropractor that was in my early 20s, lower back pain, you know, progressing on and yeah, just kind of, then more and more symptoms would appear. My neck is always been a constant. I had a horseback riding accident about 10 years ago and I had a compression fracture in my L five in my spine. And I think that must have maybe triggered some of the pain down in my head since a sacroiliac region and that's what showed up on the X ray done a year and a half ago.

Jayson Sacco:

So when that X ray was done a year and a half ago, that was say 18 ish 19 is yours since symptoms had kind of been noticeable for you. 

Julie Caviezel:

Yeah. 

Jayson Sacco:

What did it look like? Were you seeing just inflammation or fusing or both?

Julie Caviezel:

So he I rheumatologist showed it to me and he said right there he pointed to the fakro iliac joint and the hips and he said that's, that's a yes. And so I I didn't ask a lot of questions. It does. I don't think it's using yet but I don't know for sure. I haven't gone I've gone back once because he really wants me to go on Humira. And that's a whole other topic. For a while. I think I had my head in the sand and wanted to be in kind of like denial about it. So hey, I got my diagnosis great, I'm validated but I don't want to focus on it right now. So, that being said, I know there is joint damage and inflammation around there. He also did a kind of the ultrasound where he goes almost head to toe and looks at joints and said that I had basically like tennis elbow and all my joints. So that was another tool. He used to diagnose me. So he he used some sort of an ultrasound to measure my levels of inflammation in my joints and determined that I have like a pretty high number. So that was also a diagnostic tool he used but he's the first specialist I've been to, I've gone to two other supposedly renowned rheumatologists over the years and they they just would sit and talk to me and hold my hands. And then put me on like, try put me on Neurontin and tell me, I had fibromyalgia. 

Jayson Sacco:

And what you said was interesting, and I The reason I asked about where your pain started, you had no idea I was gonna ask that this week's episode I'm doing that come out tomorrow, I noticed a fact from the Spondylitis Association of America that said that a lot of women's pain starts in their neck, not their lower back, and kind of works down in reverse. So it's true, you almost fit that your classic in that you've had the neck pain, but you don't have the gene which really, I think people need to pull back on that you've got, you know, there's too much focus, I think, put on that HLA b 27, that you do or don't have it.

Julie Caviezel:

A lot of false positives and false negatives in any genetic testing. So it could be that I just, it's a false negative Who knows? 

Jayson Sacco:

Yeah, so I, I think you've got to look in and now with a much more wider understanding of non-radiographic axial spondyloarthritis. You really as a doctor, have to look at the whole picture and let's face it, osteoarthritis, rhuematoid arthritis; those are the doctors bread and butter. They're going to see 15 people with rheumatoid arthritis or osteoarthritis, for every one they see with ankylosing spondylitis, I get that. So they're going to be more in tune with those other conditions. I know that. And that's why I have to be more of an advocate more of a knowledge base for the doctor. The greatest thing now is all these doctors have these email systems. And I've uploaded numerous files to her system on Ankylosing Spondylitis to say, just in case you haven't seen this, here you go. Now she wants to delete it that's on her, but I've at least provided it to her.

Julie Caviezel:

Right. I know even my primary care doc admitted to me, I mean, was pre COVID. So it's all a blur, right? But my last appointment with her she said, be honest with you. I just there isn't much more information on AS now than there was 30 years ago. It's just not really studied. There's not a lot of it's updated.

Jayson Sacco:

I don't agree with that. I think there might be some textbooks that haven't been updated as much. You know, the whole axial spondyloarthritis family, I think is much more in the news. Now because of the ability for biologics to be used, right? From the pharmaceutical company, they have a vested interest to provide information on how they can or can't be of assistance using the biologics. From the doctor's standpoint, the biologics are advertised on TV. So you and I, as patients, we may be going in there and ask you about them. So they need to have some minimal understanding of what they're talking about. So good or bad, the cats out of the bag. So they have to have some basic understanding and it works. For example, I'm on Cosentyx, which works with psoriatic arthritis as well. There's Enbrel, which, you know, you've got different commercials on featuring different people. Everything is different times in different places that it's advertised. But I do think that that is good for the disease because it makes the doctors have to understand it better that they have to kind of go back to the books and look at it and say, Alright, I have Jayson that's got Ankylosing Spondylitis, I've got Julie, that I thought had fibro, but she keeps coming back and none of the treatments for fibro are helping, what am I missing? Hmm, Oh, she hasn't had an X ray in 15 years, or she's never had an X ray by me, or she had an X ray and it was no middle of the road. I need to order an MRI or whatever. You know, whatever the issues are, they need to dig deeper. And I don't know if they're capable of doing that at this point. And that's why I've been a huge advocate of being your own advocate. I had a gentleman on the show. Well, I don't know. 8-10 episodes ago, 10-12 episodes ago. James Allen, who came up with an app for your phone called Chronic Insights. He's out of England, and he has Ankylosing Spondylitis. Well, this app is basically designed to allow you, or any of the person that uses it to go in and input where they're having pain. And I think for a small fee, either on a yearly or monthly basis, remember, you can track numerous conditions, as well as create an exportable document for your doctor to then look at because I don't know about you, but every time I go to the doctor, they say, here's a piece of paper. Tell me how you've been feeling for the last five to seven days. And yeah, invariably, those last five to seven days? I've felt great, 

Julie Caviezel:

Or, yeah, and like you circle the number and or it's a smiley face and then a sap. Yeah,

Jayson Sacco:

Exactly, where's the, you know, the I feel like* bleep* three days a week and I feel mildly okay. You know, 12 days in a month and it just doesn’t, I don't think it gives them enough information. So someone like you goes through a 20 year period of trying to convince them that there's something wrong. And I get so aggravated about this because my experience was completely opposite. I was 14 years old. I had been in pain for four years was told over and over it was growing pains. Go to a chiropractor, go to a chiropractor. Finally, he was a family friend, super nice guy. And he finally said, Look, he goes, everything I've done, should have fixed it. He goes, there's something else going on in here. We need to get this looked at. So 14 years old, I can't even drive yet. My mom takes me down to a rheumatologist appointment. We're sitting there in the office. in comes the rheumatologist. He says, stand up, turn around. He looks at my hips a little bit. Now he also said some misleading information but which later change but not not because he was trying to be misleading as was because he was just saying what was thought of at the time. He says squeeze my hand So he put two of his fingers in my hands and squeeze those. Now I know he was checking to see if I had arthritis in my hands. He comes back and he says, You have Ankylosing Spondylitis? And I said, What's that? And he goes, Well, he goes, now I'm going to do the X rays, the bloodwork and everything else to verify my diagnosis of you. And I said, Okay, when got x rays, bloodwork, HLA b, 27, positive. Now, again, this is going back 36 years ago, so that was the main genetic marker. And he just goes, boom, boom, boom, here's what you got. See in six months. And I thought everybody got that. You go to the doctor, they tell you that Ankylosing Spondylitis to give you an end set out you go wasn't until I started getting involved in the community a decade ago, on these Facebook forums, and starting to hear from people like you said, Oh, no, I've been fighting my doctors for 20 years. And I'm like, What in the hell That's crazy. 

Julie Caviezel:

Do you find in your experience in the last 10 years of connecting with other is patient that it isn't the majority of women who tend to be dismissed by their doctors. Do you find it? Yeah, she, yeah, I, I feel like doctors in general, when a male complains of pain, they take it seriously, which I find kind of funny because I think women in general have pretty high tolerance of pain and being that we birth large babies. And so I would always say like, they'd asked on a scale of one to 10, especially once I've had three kids, and they're all like nine to 10 pound babies,

coming out, right, let's be real, and they'd say, like, on a scale of one to 10 how's your pain? I was like, well, 10 childbirth to me, and so I mean, maybe like a six or seven or you know, but I do feel like there is something to be said. And I don't know how to change that. Maybe it's just having these conversations and putting it out there and hopefully more healthcare partners will take women seriously. I don't know what it is about it becoming a sexist thing or, you know, discriminatory to women.

Jayson Sacco:

You know, I think it goes back to the original way this disease was looked at. And that if you, if you turn it back, I did it. Just out of curiosity. I'm a history major. So I did a history of a s and in looking back at it, they started off in the 16,17, 1800’s. They only looked at male cadavers. So, if I'm only looking at male cadavers, then I'm only going to see this disease in men. Okay. So fast forward that through a few hundred years of medical knowledge, and if you don't have any women in the studies, and something I learned from a gentleman that used to be the president of the Canadian spondylitis Association, is that when you look at the overall axial spondyloarthritis, that includes both non radiographic and as about two thirds of the People with AS are men. One third are women that that's not exact, but it's close. About two thirds of the non-radiographic are women and one third are men. So when you look at the axial spondyloarthritis umbrella, we're about one to one, it's about on par. Women just present different. And because they present different, and the doctors want to a, let's face it, they want to get you out of the office because they need to turn over that table. Yeah, they do want to help you. I don't want to make it seem like they don't want to help you. 

Julie Caviezel:

Yeah, I think there's maybe a burnout and tired of the carousel.

Jayson Sacco:

Yeah. And they have to do it in the fastest, most expedient way. And they know that if I diagnose you with if I diagnose you with fibro first and everything works, then I hit the nail on the head, because exactly because you weren't showing the HLA gene. The issue was that your family Is and so that was the missing piece. I just, I get very aggravated by it because man or woman, nobody should have to suffer with this damn disease.

Julie Caviezel:

Yeah and it's also frustrating to me because I try not to think about it, but just in our conversation, it obviously brings it up. But I wonder sometimes if I had been diagnosed earlier would I have had as much joint damage and pain and maybe my life would have been different. Who knows, I mean, it can be, especially when you're not diagnosed and you're kind of going down a rabbit hole of sorts and you're just in chronic pain and fatigue and you don't know what is wrong and you feel like you're fighting against your body. Like I liken it to walking in a wind tunnel against the wind and it's just this extremely frustrating, fatiguing, feeling that you're fighting all the time. It affects your relationships. I've lost friends because I've gone through periods It's where I've been so anxious and so irritable and just not myself. And so yeah, I mean, it definitely affects your entire existence. And I mean, I guess there's no point to do the whole what ifs, but it is.

Jayson Sacco:

Yeah, everything can derive a what if but I completely agree that I never knew if I was an anxious person or, and or have the as caused me to be an anxious person, but my anxiety level was through the roof. Sometimes bordering on just almost paranoia type levels of anxiety. Yeah. And I went unmedicated and it created issues. I've lost marriages because of it, friends, and I correct some of that and that's the next topic that we're going to talk about. I'm going to skip over the biologics for a minute. I am a huge proponent of them. But on top of biologics, there's also another way that you can help with things like sleep, pain, the anxiety that we discussed. And that's the use of cannabis. Yes. And you are a big proponent of the use of cannabis, which is one of the things I as am I, I think it's ridiculous that it's not legal in all 50 states and I, I use it for sleep not regularly I I don't use it near as much as I think might be fun, but it is a fantastic for me, anxiety reliever as well as a sleep inducer.

Julie Caviezel:

Mm hmm. For sure.

Jayson Sacco:

So how did you get into use of it?

Julie Caviezel:

Well, gosh, I mean, in high school, I didn't recreationally as more of a rebellious teen thing you know, and that was before it was legal in our state in Washington. So you would just you know, go a few bucks in on it with some friends in a ziplock baggie and you don't know what you're going to get right. And what I love fast forward to me as an adult, and you know, and then there was a period for maybe, I don't know, 15-20 years where I didn't use it at all, but once it became legal in our state, I actually had friends who own they own a series of high end, pot shops, retail, recreational pot shops, and it just really started to interest me the science...]]>97f583a6-9fb0-412a-a632-3de17716d64bSun, 30 Aug 2020 09:00:00 -040001:04:26falsefull6565Flares - Know the Symptoms and how I Dealt with ThemHello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing fantastic, It's been just amazing weather here as we wrap up the summer, can't believe I'm saying that.  I am look forward to moving into the fall. I want to take care of a couple of housekeeping things before we get started. If I could get everyone to head over to spondypodcast.com and sign up for the Whenever I Feel Like Sending It Out newsletter, I would really appreciate that. Also, whatever you're listening to on this, whether it be Google podcasts, Apple podcasts, Spotify, whatever, if you can hit the subscribe button so that the show gets delivered right directly to you each time they're published. That would really mean a lot. And then last while you're out there on spondypodcast.com, if you could leave a review for the show. Wow, that would really mean a lot to me. I don't care if you leave it on Apple or Podchasereither one of those two would be fantastic, but I really could use your help to get the word out and if you know somebody who's got Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis you know, please feel free to share the show with them, send them a link to it, whatever works best to get the message out and get more folks that are dealing with Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis to be brought into the family and take part in the episodes. I also wanted to let everybody know that I've started a second podcast and it is called Discover Michigan's Thumb. So if you're from anywhere in the world and want to know more about the people, places and things that go on in Michigan's Thumb, the history, the beautiful, you know, Lake Huron, the sunrises, sunsets, all the amazing things that take place here, please head on over to discovermichigansthumb.com and check out the show. I would really appreciate hearing from anybody that's been here before, from out of state, out of country. People that want to come here, you know, it's just a fun and fantastic area with so many things to do from kayaking along the Great Lakes to even just sitting on the beach and relaxing with a book or taking in the historical sites. 

So with that, I wanted to go on to today's show, one thing I wanted to discuss and I've seen a lot of conversation generated about it is,  "I'm having a flare". What do I do with this flare, it's killing me? I'm feeling so bad, fatigue, everything. I don't know what to do. How do I get help with that? And you know, it's really interesting because flares affect everyone different. And I also help moderate a board on Facebook called Living with Ankylosing Spondylitis. And one of the things I've noticed is there'll be a lot of questions come in on flares and I'm in a flare, I just came out of a flare, you know, whatever the thing is that you're encountering. And we'll also get some questions from folks that have been told in one form or facet that their flares might get less as they age, and what I see Is all of a sudden everybody piles on and says, No, no, you need a new doctor, your rheumatologist is terrible. I have to go in and sometimes remind everybody is that all of our experiences are different and doctors will hand out some very generic information at times. And well, you may experience more pain or a different level of pain or a different level of flares at your age. That doesn't mean everybody does. Some people do experience a tempering of the flares. I can say that for the most part, I haven't had a bad flare in at least five years. Now I do get some pain on occasion. And most of that is helped by being on Cosentyx for the last almost three years, but I have to remind folks and I want to point out that some people will get flares, some people will get a worsening of AS as they go along. Some people might not start]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing fantastic, It's been just amazing weather here as we wrap up the summer, can't believe I'm saying that.  I am look forward to moving into the fall. I want to take care of a couple of housekeeping things before we get started. If I could get everyone to head over to spondypodcast.com and sign up for the Whenever I Feel Like Sending It Out newsletter, I would really appreciate that. Also, whatever you're listening to on this, whether it be Google podcasts, Apple podcasts, Spotify, whatever, if you can hit the subscribe button so that the show gets delivered right directly to you each time they're published. That would really mean a lot. And then last while you're out there on spondypodcast.com, if you could leave a review for the show. Wow, that would really mean a lot to me. I don't care if you leave it on Apple or Podchasereither one of those two would be fantastic, but I really could use your help to get the word out and if you know somebody who's got Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis you know, please feel free to share the show with them, send them a link to it, whatever works best to get the message out and get more folks that are dealing with Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis to be brought into the family and take part in the episodes. I also wanted to let everybody know that I've started a second podcast and it is called Discover Michigan's Thumb. So if you're from anywhere in the world and want to know more about the people, places and things that go on in Michigan's Thumb, the history, the beautiful, you know, Lake Huron, the sunrises, sunsets, all the amazing things that take place here, please head on over to discovermichigansthumb.com and check out the show. I would really appreciate hearing from anybody that's been here before, from out of state, out of country. People that want to come here, you know, it's just a fun and fantastic area with so many things to do from kayaking along the Great Lakes to even just sitting on the beach and relaxing with a book or taking in the historical sites. 

So with that, I wanted to go on to today's show, one thing I wanted to discuss and I've seen a lot of conversation generated about it is,  "I'm having a flare". What do I do with this flare, it's killing me? I'm feeling so bad, fatigue, everything. I don't know what to do. How do I get help with that? And you know, it's really interesting because flares affect everyone different. And I also help moderate a board on Facebook called Living with Ankylosing Spondylitis. And one of the things I've noticed is there'll be a lot of questions come in on flares and I'm in a flare, I just came out of a flare, you know, whatever the thing is that you're encountering. And we'll also get some questions from folks that have been told in one form or facet that their flares might get less as they age, and what I see Is all of a sudden everybody piles on and says, No, no, you need a new doctor, your rheumatologist is terrible. I have to go in and sometimes remind everybody is that all of our experiences are different and doctors will hand out some very generic information at times. And well, you may experience more pain or a different level of pain or a different level of flares at your age. That doesn't mean everybody does. Some people do experience a tempering of the flares. I can say that for the most part, I haven't had a bad flare in at least five years. Now I do get some pain on occasion. And most of that is helped by being on Cosentyx for the last almost three years, but I have to remind folks and I want to point out that some people will get flares, some people will get a worsening of AS as they go along. Some people might not start fusing if they fuse at all, or later in life. I started fusing when I was probably at least, I'll bet you, maybe 12. My hips were shot by the time I was 20. I had my hip first hip replacement at 21. My next hip replacement done at 23 and my back fused up then fairly quick. Up until maybe my mid 20s my back really hadn't been affected at all, it was my hips, my sacroiliac joints. And then when my back started in, oh geez that was a whole new ballgame. And after that ended, I'm now getting some issues with my neck. It is fusing slowly thanks to the Cosentyx much slower than the weight my hips and my back came on like freight trains when they hit it was just this massive, several years worth of excruciating pain. That's the best way to describe it. But remember that everybody's journey with this disease is different. That's part of what makes it so hard for diagnosis and it is entirely likely that some people may encounter less or no flares as they age. Well, unfortunately as you age, it might just keep getting worse and worse. Yes, the disease is progressive, but it's progressive to a point, once it's fused, you can't really get any worse than a total fusion. So remember that everybody's fusion level, and rate is completely different. So when you see somebody online that asks, "Is it true that, you know, we might get less pain as we age?", the really the only answer is "Maybe", and then add in your experience of, for me, that's not been the case so far. It would be nice in the future. If that happens for me up until this point, it's not been the case or yes, that was the case with me, but to just make blanket statements that know, that's wrong, is not really right to do. Anyway, that's my soapbox on that. I just want to let you know we all get this darn disease different and it affects us differently. So use the online boards as a learning tool, use them to help cope with what you're going through and to help you deal with the overall situation. Because it's really neat to go in there and see what everybody's dealing with and know how to take that back and use it yourself enough for that. 

Today's article, it was out of healthline.com and it's called Knowing the Symptoms of an Ankylosing Spondylitis Flare Up. Ankylosing Spondylitis is a type of autoimmune or autoinflammatory arthritis that typically affects your spine, hips, lower back, joints. The condition causes inflammation that we know leading to pain, swelling, stiffness, and other symptoms like other kinds of arthritis. As can sometimes flare. A flare happens when the symptoms worsen during the flare up, you might need to take more care and treatment than you needed at other times. What we all shoot for is that remission or even partial remission is when you have fewer mild or even no symptoms. The remission is really the holy grail of what you're trying to get to. So knowing when we might have a flare up what we can expect, and how to best hopefully overcome and soothe some of the symptoms is really what we're looking at doing. And that's what some of this was discussed in the article. So I kind of thought I would go through some of it again, relating it to me, and also to some of the things that I see people write online. 

What is a symptom of a flare up? Well, flare ups and their symptoms can be very different for every person with ankylosing spondylitis. And trust me, we moderate every message that comes in that board. So seeing the just hundreds of messages every day about the different ways what flares are affecting people, what ways is just mind boggling at times. Most people with this condition will notice symptoms from the ages of 17 to 45. Again, that's just a generic, there are people that are much younger. There are people that are much older, but the 17 to 45 is just kind of the middle of the road symptoms can also begin during childhood. And in older adults, you know that the article still goes by the thing that as is two and a half times more common in men than women. You know, it's sad that this is still out there and floating around and I look forward to the day when it's looked at more on a parity with AS. We know it tends to affect,AS tends to affect men a little bit more than women and the non-radiographic axial spondyloarthritis affects more women than men. But when you put it together under Axial Spondyloarthritis, it's pretty close to get to be a one to one. There are two kinds of AS flare ups now. Well, this article does talk about Ankylosing Spondylitis, a lot of these flare up issues are really applicable to non-radiographic axial spondyloarthritis as well. The difference being that with non-radiographic you'll get all the pain of the flare, you'll get all the issues to deal with. But in a good way, you're not getting at least the noticeable fusion taking place. The bad part is that you're still getting all the pain. So it's a double edged sword there. But basically even though it's saying Ankylosing Spondylitis in the article, a lot of this is applicable to both under the umbrella term of Axial Spondyloarthritis. So it can be local, you know, the pain can be local in one or two areas, maybe in your hips or your shoulder, or it can be general throughout the body. And I never had flares that were throughout the body, mine were always local. So for anybody that has one that is throughout the body, and everything hurts all I can't even imagine that I really feel for you. That's got to be just a terrible experience. Mine like I said, were primarily my hips and back. The signs and symptoms of the Ankylosing Spondylitis flare ups may change depending on how long you've had the condition long term, as flare ups typically cause signs and symptoms. As more than one part of the body, so again as the progressive disease starts off and affects your spine, moved to hips, maybe moves up to your neck, your shoulders down to your knees or your feet, that's the progressiveness of it. And if full fusion doesn't take place, you may experience worsening pain as you age as fusion takes place. Pain diminishes somewhat or changes as I like to say, and you may have different lesser flare ups feel like you're in remission. So what are early symptoms of a flare up? Well, there can be pain in the lower back hips and buttocks and the pain may gradually over a few weeks or months Come on, you may feel discomfort on only one side or on alternating sides. The pain normally feels dull and spreads over the area. Mind and a lot of cases I can remember when my hips were at their worst is it would take me 30-40 minutes to get to bed. I would have to use my right leg to shuffle my left leg over to the side of the bed in I would almost have to roll out of the bed fall on the floor because I couldn't just sit up and let my legs go to the floor, the pain would, you know, bring me to tears and there really wasn't a treatment for it. You can do some light exercise and stretching your breathing exercises, some basic yoga, some Tai Chi, if you can do that, you know if you can get to a pool and exercise in a pool, that's fantastic. Maybe a warm shower or a bath, heat therapies like a heating pad. Take some non steroidal anti inflammatories, you know, aspirin, ibuprofen, if you can, and then some physical therapy. And that's really about at this time all that can be done. Some people have tried acupuncture, I have not, I'd be curious to hear from you if you have, go to the website and shoot me a message about how that worked for you. Something actually I'm interested in trying and then there's medications on top of that if you're on a biologic that might help to reduce some of the pain overall, you know, by reducing the inflammation The stiffness, you know, you can have this stiffness in the lower back, hips, the buttocks really anywhere that the flare is affecting you. And it might be different whether you're standing up or sitting down. I see people write online about, I can't stand up. I can't sit down, I can't get comfortable. What do I do? I'm, I'm going crazy. I can certainly relate to that stiffness is typically worse in the morning and at night and improves during the day as you move around. Inactivity is a lot of times the worst thing for Ankylosing Spondylitis and again, it's the treatment for it is the similar stretching movement, light exercise, you know, physical therapy, heat massage, or even massage therapy if you have access to that neck pain and stiffness. You know, noted in this article is the Spondylitis Association of America notes that women may be more likely to have symptoms that start in the neck and not the lower back. Again, treatment is very similar. It's light exercise and stretching. Again, Tai Chi yoga, just your basic stretching warm Shower bath. I've noticed a lot of people talk about using Epsom salts for these baths. And I've never tried that I'd be curious to hear what people think and respond to using that. Heat therapy, NSAIDs, physical therapy. And then again, massage therapy. Fatigue is another item. Now, once your body is filled with inflammation, and if you're in a major flare, that inflammation is attacking as many areas as it wants to in your body, and that can lead to the fatigue that we all experience to one level or another. I know for the last probably six months, eight months by fatigue level has even doing well on Cosentyx my fatigue has just been crazy. So I'm not sure what's bringing that about, but the fatigue can lead to tiredness. And this may be worsened by disturbed sleep at night due to pain and discomfort. So really controlling inflammation can help in some ways to manage the fatigue. Not always but it can help Help begin treatment with that could be physical therapy, massage, and zeds any of that you might want to try other early symptoms that you may encounter inflammation, pain and discomfort can cause loss of appetite, weight loss, and a mild fever during flare ups. So managing the pain, inflammation helps to ease some of these symptoms. And again, with that treatment for it can be something as similar as an Said's physical therapy, light exercise and prescription medications that you are taking long term symptoms of a flare up. Well, chronic back pain as an Ankylosing Spondylitis flare up may cause chronic back pain over time. You may feel dull; the burning pain on both sides of the lower back, buttocks or hips could be one side could be both sides. Chronic pain can last for three months or longer. I mean there's really no timeframe as to when a flare lasts, the minimum amount or the maximum amount. So I've witnessed people online saying that they've been in flares for years. But again, treatment is NSAIDs, prescription meds possibly a steroid injection physical therapy that can be floor work or water exercises, you know getting into a pool, or even possibly massage therapy. There's also pain and other areas besides the back and that can spread to other joints, shoulders, your hips, sacroiliac joints, really wherever it wants to go. So you may have pain and tenderness in the mid upper back, neck, shoulder blades, ribs, thighs, heels, wherever I have it in my left shoulder at times haven't had it in a while. I attribute that mostly to the Cosentyx. But it would get so bad where I couldn't lift up my left arm, I would have to use my right arm to pick it up. The pain was excruciating. Again treatment, NSAIDs, prescription meds, steroid injections, you know in physical therapy. And then so for some people over time, stiffness comes into play. You may also have more stiffness in your body over time. Stiffness may also spread to the upper back, neck, shoulders, and ribcage. Again, it's gonna go wherever it wants to go with the stiffness being worse in the morning, gets better during the daytime as you're active, but then it can also you may have muscle spasms or twitching. And I'll kind of tell folks this when my back started really flaring bad. And I wasn't on any treatment at all. This would have been in the late 90s when I was living in Phoenix. And for the most part, the weather out there really made a difference. It really helped. But I can remember there was I was feeling really terrible for a couple days and just an immense amount of pain. And I sleep it in my wife was in bed next to me, you know when man I came shooting up in bed, sitting straight up, just screaming in the middle of the night, scared the heck out of her. And she was like, what's wrong? What's wrong? First thing she's thinking is maybe a scorpion have gotten the bed or whatever. And the only way I could explain it was that from right about my hips to my neck. It felt like I had just gotten a charley horse across my whole back. It was the mother of all spasms in this happened a few times, and it was just ungodly pain. And there was nothing you could do to unwind it so to speak, it had to do it itself. And I would just shoot up and screaming pain and then eventually be able to straighten back up to lay down, roll onto my side and usually didn't happen again that night. It was insane. I did some stuff I shouldn't have done I was taking copious amounts of and NSAIDs. It's probably why I have kidney damage now because I was taking so many and it was about this time that I got put onto Celebrex would be a few more years after this but it was about this time that I was finally put on Celebrex. But even then I was prone to occasionally taking end sets on top of the Celebrex, which was just more on more And again that's probably why I have the kidney damage now but the really the only treatment for this is NSAIDs or prescription meds, maybe some muscle relaxers. I never had much luck with those but I never really tried anything past Flexoril so there could be other stuff that's stronger physical therapy, floor and water exercises, a sauna or even massage therapy and even now that I'm really fused, and I still have the stiffness from just overall being fused and waking up in the morning but do my deep breathing and I love a good massage how lay down on the massage table and I'll ask to just have that lower back of mine. The massuse can skip the legs, skip the shoulders, I don't care about any of it. I had one my Seuss she understood as real well and she was really good at working out and I would go in and get to our massages where she just worked basically from the rib cage down to my waist. That was it at you would work at hard and it was great. I just lay there on my stomach. She would just go to town just massaging the muscles and working on everything. Oh, I loved it. And so I don't have access to it anymore since I've moved but you know, it's hopefully once we get able to get to massage parlors, and so forth and find a good mazuz I can find somebody that's relatively familiar with this. The other thing is loss of flexibility, you may lose normal flexibility in some joints, long term inflammation in the joints confused or join bones together, I fused my sacroiliac joints, my most of my back I posted pictures on if you go to the Instagram page for the podcast, which is as_podcast, and I'll have a link in the show notes. I posted pictures of my X ray so that you can see exactly what it looks like. But again, there really isn't any treatment. I have had the hip replacements to deal with fused and broken hip joints, but the main treatment is going to be NSAIDs, prescription meds, muscle relaxers, steroid injections back or hip surgery if applicable and physical therapy. Another thing is difficulty breathing and your ribcage can also fuse or joined together. The rib cage is designed to be flexible to help you breathe. If the rib joints become stiffer, it may be harder for your chest and lungs to expand. This may make your chest feel tight. Again, do your breathing exercises every morning and every night when you sit down to watch TV three, four deep breaths,...]]>10898295-c36b-496e-b47d-a67eee62d6c6Sun, 23 Aug 2020 09:00:00 -040026:31falsefull6464De-Stress from AS - Try these 10 TipsHello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everyone is doing fantastic. This week's message is all about ways to distress yourself and you know how, to hopefully put yourself in a better position with your Ankylosing Spondylitis and your mental state. 

This last week has been a bit of a challenge as my family moves through the one year anniversary of my father's passing. So you know, kind of some stressful items dealing with, thinking about, and I started looking and thinking what are ways that I can help myself to feel better, to move through this at an easier pace. I did turn to some meditation to help with the process just to really calm my mind and then look at some pictures and things like that. But how do I carry this forward for Ankylosing Spondylitis when it's not some kind of major anniversary but just in the day to day life, that we deal with having Ankylosing Spondylitis always present. 

So I came across this article that was titled De-Stress with AS: 10 Strategies to Ease Your Mind(link at end of show notes). And I thought, you know what I’ll read through them and there's a lot of really good information in it. As we all know, stress can trigger a lot of things. But for Ankylosing Spondylitis, the worst thing that we can get from stress is a flare, because we don't know how long that flare is going to last. And sometimes we can control it with medication and other times it runs amok and it's just over the top and we have no ability to rein it in until it decides it wants to stop. That alone is enough to try and keep stress at bay and it's really something we want to focus on as much as possible. There are many ways to de-stress you know, including properly treating your AS, practicing some relaxation techniques, talking to someone or just finding joy in a favorite hobby or extracurricular activity. So you may experience stress, you know, for multiple reasons, if you have Ankylosing Spondylitis with all the stuff going on right now with the COVID around the world, it could be financial health, all sorts of things are going on that can cause stress and lead to flares. Stress can lead to AS flares as I said, by creating tension in your body and triggering a response from your immune system. And once that happens, again, it's run amok and we don't have any easy way to control it. We can, again use medications to help to reel it in, but you know, that may or may not work. So what we want to do is proactively try to reduce stress, which may help to calm your mind and reduce or prevent additional ankylosing spondylitis symptoms. So, you know, try some of these methods. 

Number one, Stick to Your Treatment Plan. One critical factor for managing Ankylosing Spondylitis is to stick with what the doctor recommended to you. This generally can help to reduce flares, not all the time, but it can help to reduce flares. And maybe that can help to alleviate some stress. So they provided a checklist of things and your treatment plan may include checking in with your doctor regularly, seeing a physical therapist, or similar medical professional, staying active and eating a healthy diet, taking medications as directed, especially during flares, resting when needed, and avoiding smoking. Now, most of those I've done for pretty much my whole life. I never smoked, resting you know, when you're a young guy, you go, go, go, go and same with people that everybody else when you're young, you just go like crazy. So you get as much rest as you can and you just deal with it that way. Now, taking medications is, in my opinion, very important. When I was younger, there were no biologics and when I got to point where I could take them the type Humira and Enbrel didn't work long term for me. So that was something that it wasn't until about three years ago that I was prescribed a different medication, a biologic Cosentyx that worked...]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everyone is doing fantastic. This week's message is all about ways to distress yourself and you know how, to hopefully put yourself in a better position with your Ankylosing Spondylitis and your mental state. 

This last week has been a bit of a challenge as my family moves through the one year anniversary of my father's passing. So you know, kind of some stressful items dealing with, thinking about, and I started looking and thinking what are ways that I can help myself to feel better, to move through this at an easier pace. I did turn to some meditation to help with the process just to really calm my mind and then look at some pictures and things like that. But how do I carry this forward for Ankylosing Spondylitis when it's not some kind of major anniversary but just in the day to day life, that we deal with having Ankylosing Spondylitis always present. 

So I came across this article that was titled De-Stress with AS: 10 Strategies to Ease Your Mind(link at end of show notes). And I thought, you know what I’ll read through them and there's a lot of really good information in it. As we all know, stress can trigger a lot of things. But for Ankylosing Spondylitis, the worst thing that we can get from stress is a flare, because we don't know how long that flare is going to last. And sometimes we can control it with medication and other times it runs amok and it's just over the top and we have no ability to rein it in until it decides it wants to stop. That alone is enough to try and keep stress at bay and it's really something we want to focus on as much as possible. There are many ways to de-stress you know, including properly treating your AS, practicing some relaxation techniques, talking to someone or just finding joy in a favorite hobby or extracurricular activity. So you may experience stress, you know, for multiple reasons, if you have Ankylosing Spondylitis with all the stuff going on right now with the COVID around the world, it could be financial health, all sorts of things are going on that can cause stress and lead to flares. Stress can lead to AS flares as I said, by creating tension in your body and triggering a response from your immune system. And once that happens, again, it's run amok and we don't have any easy way to control it. We can, again use medications to help to reel it in, but you know, that may or may not work. So what we want to do is proactively try to reduce stress, which may help to calm your mind and reduce or prevent additional ankylosing spondylitis symptoms. So, you know, try some of these methods. 

Number one, Stick to Your Treatment Plan. One critical factor for managing Ankylosing Spondylitis is to stick with what the doctor recommended to you. This generally can help to reduce flares, not all the time, but it can help to reduce flares. And maybe that can help to alleviate some stress. So they provided a checklist of things and your treatment plan may include checking in with your doctor regularly, seeing a physical therapist, or similar medical professional, staying active and eating a healthy diet, taking medications as directed, especially during flares, resting when needed, and avoiding smoking. Now, most of those I've done for pretty much my whole life. I never smoked, resting you know, when you're a young guy, you go, go, go, go and same with people that everybody else when you're young, you just go like crazy. So you get as much rest as you can and you just deal with it that way. Now, taking medications is, in my opinion, very important. When I was younger, there were no biologics and when I got to point where I could take them the type Humira and Enbrel didn't work long term for me. So that was something that it wasn't until about three years ago that I was prescribed a different medication, a biologic Cosentyx that worked great for me. What worked for everybody, I know some people try it and don't have any luck with it and get on the Humira or Enbrel and have great luck. Everybody's different, but work with your doctor to come up with a treatment plan that works best for you. And then I had done some physical therapy recently for a hurt hip and back and that really helped out and gave me some ideas about further working on the hip to try and get some mobility back into it. See, as you are best able to see the different doctors and stay on any type of treatment plan. 

Number two, See a Mental Health Professional. We all know that living with AS can cause you know, emotions to be all over the place. Whether we're easy to live with, irritable, hard to live with, probably all the above. So consider seeing a therapist or other mental health professional to help you manage the stress. If you're married or in a relationship, maybe see a couples counselor to help with any issues that can come about because of the Ankylosing Spondylitis. Because I know from past relationships, there was time when my significant other she just didn't understand what I was going through. She thought she did, she tried to, but she didn't and it wasn't until we brought in a neutral third party that were able to overcome some of the issues. There are different techniques that they can help you out with. They can help you deal with anxiety and depression. So you know, whatever your symptoms are, don't be afraid to go talk to somebody that's a mental health professional and get the help that you need. 

Number three, Stay Active with Low Impact Exercise. We all know that it's important to exercise and it's important to do whatever exercise you can do. I've said this before, you may only be able to get up and walk safe from a living room, around, you know, out to a kitchen and back and forth four or five times before you're just physically unable to do anything else. If that's the case, 2,3,4 or five times doing that is better than nothing. And if you get that to a point where you're doing it 10 times, 12 times, next thing you know, you're going to be outside walking around the block and then a little bit further and a little bit further and every little bit helps. It's that baby steps to get started. So it might be swimming, walking, if you can bike, that's great. Not all of us, including me, I I can't bike, my hips are shot, so I can swim. I was swimming before the whole COVID shut down thing and hopefully when the gym start open back up, I'll be able to get back into use the pool. 

Number four, Try Breathing Exercises. Breathing exercises can be an effective way to manage stress no matter where you are. One simple way to practice breathing exercises is to take deep breaths very slowly. Focus on your breath and try to clear your mind of other thoughts as you inhale and exhale. You may also practice breathing exercises more intentionally in a quiet space. As you do that, you know, sit in a position that's comfortable, and try to align your shoulders with your hips. While you elongate your spine. You may slack in other parts of your body like your face, close your eyes, place a hand on your stomach and breathe in slowly feeling your body rise and fall with each breath. I have to honestly say I don't do very much with the breathing exercises. I do every morning when I get up by sit on the edge of my bed and do three to 10 deep breaths to try and exhale and inhale. Exhale and inhale to try and stretch out the lungs and get the rib cage moving and keep that flexibility in my my rib cage going but That's really pretty much the extent of the breathing exercises I do. Others may do more and there's a ton of videos on YouTube that can help you get started. I'll have a link in the show notes to a video on youtube I found on breathing exercises that may be helpful to you. 

Number five, Practice Mindfulness. Mindfulness is a type of meditation that focuses on concentration on the present and letting your worries slide away. Research has found that this practice may help relieve stress, anxiety and depression. Mindfulness and other forms of meditation may take time to learn. So try not to get frustrated if you struggle to release your stress. When you first begin this practice, it'll get easier with time, you can begin to practice mindfulness by yourself at home or seeking training from oppression. This is one meditation I do twice; well I try to do twice a day. 20 minutes in the morning, 20 minutes in the afternoon. I took a class Oh geez, four years ago at the transcendental meditation Institute, or place in in San Antonio, Texas when I lived there. It was a four-day class on the basics of transcendental meditation. I enjoyed it. I never went back for any of the more special classes, specialized classes. I didn't want to do any of that. I just wanted the basics of doing the meditation. They did show me that. And it was a fantastic item for me. And I enjoyed doing it. It does. Calm you. Had you asked me before I took that class if I believed in it, I would have said no. I would have, you know, scoffed at you and said that it's nuts. But after I tried it, my outlook on it changed my view of it changed. And I completely I'm a huge believer in practicing meditation now. Whatever way works best for you. There are lots of videos online, on YouTube again that you can access to start meditation if you want. You don't have to go take a formalized class if you don't want to. And again, in the show notes, I'll have a link to a basic meditation video that I found on YouTube that I'll provide for you. 

Number six, Practice Tai Chi and Yoga. Well, here's the thing again, everybody tells you do yoga, do yoga, do yoga, and what am I telling you do yoga. I recently had on two guests that talked about their practice; they do Yoga for AS, which is their Facebook page. I'm going to have a link to Jamie and Geoff's episode in the show notes (below). And I would encourage you to listen to it. Both of them have Ankylosing Spondylitis. So this isn't some type of deal where we're going to stretch into pretzel positions and go crazy and you're going to be in so much pain. You can't stand it now Both of these gentlemen are great at yoga and can really do some advanced positions. But they're doing videos for people like you and me that are just starting off. I can't sit on the floor; I can't get into a cross-legged position. There's no way that can happen. So they designed videos for people like me, that can't do that you start off sitting on the couch, some basic stretching. I've been slowly incorporating the yoga for AS. And I'm very happy with both what Jamie and Geoff do. So I can't recommend that enough to you to go and check out that video series. Check out yoga for as on Facebook, and incorporate it in I think you'll really benefit from it. 

Number seven, Get a Massage. Normally, when you can and everything's open, I love to get massages. Even though my bed is fused, I love it when the mazuz really really works on that lower spine of mine pushes prods usually, you know, manipulated a little bit and I had a matuson San Antonio that that knew and was familiar with as and was very good about how she worked on my lower back. I don't have them appear now and I haven't been able to find them as soon as with everything being closed for the last three, four months, but once that opens back up again, I'm going to be looking for that you know, getting a massage, it can help reduce your stress and provide other health benefits if you have as there was a study done that found that massage has other clinical benefits for those with as beyond stress reduction, such as pain relief in the lower back. So discuss this type of treatment with your rheumatologist or your general practitioner or both. They may have some good referrals for us to a mazuz to see and then go in and out. Check it out, see if it helped is helpful to you. 

Number eight, Engage in a Hobby. Find something you like to do. For me, my main hobby is this podcast. I love doing it. I love interacting with the people that contact me. I'm also starting a second podcast on the history and traveling and recreation opportunities in the local area where I live. So those are two simple things for me to help relieve stress. What do you like to do because a garden? Is it fishing? Is it just going out for a hike? Is it photography? What is it, there are so many things you can do? Do a hobby that you like. And again, even if it's something as simple as walking and whatever, you know, just around a park, go for it. Get the exercise, see if you can walk a neighbor's dog for them, whatever helps you to relax and enjoy some some time out of the house. Go for it. 

Number nine, Talk to Friends or Family. Well, this is kind of another unique one in that so many people are now sequestered or staying, social distancing, and not as many people getting together, that can be a little more challenging. It's been very challenging for me. While I've gotten together with lots of family and really not changed around that too much. There's been literally no going out with friends, no going to any public places. So that's been really a challenge to me, and I'm really looking forward to the day one, go back and just stop at the local tavern to mix it up with some friends and shoot the breeze and have a good time and talk with folks. So that's really, it's really made this summer. The weirdest one I've ever experienced. 

Number 10, Keep a Journal. Well, this is a really good thing to do. And you can journal your thoughts, your feelings. Maybe you want to start a journal on just your pain in any given day and writing about it might help to get you to better diagnosis. Who knows if there are all sorts of things that can come from journaling? And well, it won't necessarily reduce your pain. You can share that journal, if it's medically based with your doctor so that they can see how you're doing. I had a gentleman on here not too long ago, James Allen, and James developed an app to put on your phone called Chronic Insights. James has ankylosing spondylitis. And this app is a way to track your pain in any given spot, and then use that to create exportable files to provide to your doctor so that they can see what you're dealing with. So I'll have a link to that show in the show notes and then you can go out whether it be a iPhone or an Android phone to look for the Chronic Insights app to document the pain that You're having associated with Ankylosing Spondylitis.

 So those are basically 10 items that you can incorporate one or more of to try and help with distressing your life might be a hobby or journal or you know, whatever we just discussed, that is very beneficial for you. And that's what's really key is doing something that you like doing something that you'll stick with and incorporating that so that you are getting some type of benefit some type of joy some type of calm for it. So again, thank you for listening. I really appreciate it. Please go out to spondypodcast.com and sign up for the Whenever I Feel Like Sending It Out Newsletter. You can also look and access Ankylosing Spondylitis podcast t-shirts there and a number of other things. And if you like the show and find value in it, please don't hesitate to stop at the buymeacoffee.com link and make a donation to help keep the show growing. Again. I really appreciate all you listeners. It's fantastic connecting with you. Feel free to send me an email at jayson@spondypodcast.com and that's Jayson with a Y, Jayson at spondypodcast.com. Love to hear from you, so take care and have a wonderful week.

Healthline.com Article – De-Stress with AS: 10 Strategies to Ease Your Mind - https://www.healthline.com/health/ankylosing-spondylitis/de-stress-with-as

Relieve Stress & Anxiety with Simple Breathing Techniques: https://youtu.be/odADwWzHR24

Beginner Meditation - https://youtu.be/JslvBcIVtDg

Yoga for AS Facebook – https://www.facebook.com/groups/yogaforAS

Yoga for AS Youtube - https://www.youtube.com/user/jboder1

Episode 060: Yoga for AS - Interview with Jamie and Geoff - https://player.captivate.fm/episode/74d73997-efdd-4029-bf8e-ae413569b535

Episode 043: Interview with James Allen – Developer of Chronic Insights - https://player.captivate.fm/episode/9b41f5a0-55c9-4fe6-9ec4-4759a2296f50

www.spondypodcast.com

https://www.buymeacoffee.com/ASpodcast

So Jed writes, you're walking down the street, you run into someone, you know, they stopped to talk and the first question they ask is, how are you? Well, we've all been there you see somebody, Hey, how you doing? What's it like? How are you feeling? For me, I walk and many of you can relate to this. Walk with a cane and I'm hunched over. So just seeing somebody coming is can be a challenge because I'm looking, you know, my neck is fused down. So to look up, I don't always see who's approaching. And my peripheral vision on the sides is bad. So I've had people say stuff to me and I, I've turned my whole body to look at them. And I think sometimes I might not hear them and they think I'm being rude. And that's not the case. It's that I don't see you or don't hear you. So, again, it's just one of those things that AS just keeps giving and affects us in unique ways. And it continues when you have a chronic illness. This is a loaded question. And it's loaded for T Rex, your friend or acquaintance is not ready for the blast. That is your answer. You say to them something like my back has been killing me for a month. I have four doctor's appointments this week. I'm trying a new medication, but it gives me headaches and my relationship with my spouse is strained because of my illness. He goes on. No, we don't say that. We don't even mention we are doing that great. We say the same thing every time I'm fine. Well, isn't that the truth? If you go into a big rundown of everything you're dealing with, most people are going to check out after like 30 seconds, then you're going to get the obligatory. Uh huh. They've got their own things they're dealing with, in some cases; they ask you how you're doing and they really don't care. They're just being, you know, nice, and that's fine. But you always have to temper it and that's one of the things that stinks about this diseases. Is it just somebody you talked to in passing? Or is it somebody that you might really know, and want to have a little more of a deeper discussion with it, and you have to judge whether they really want to have that deeper discussion, to understand maybe what Ankylosing Spondylitis says, I live in a very small town and recently, I was...]]>Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. How's everybody doing? I can't believe this year is more than halfway over. It's flying by even as, as goofy as 2020 has been. The year is just flying right by today's episode going to be a little bit different. There's a website that I like, and I sign up to get notifications when they send out new articles that are put up on the website. And the website is called ankylosingspondylitis.net. And you can go there; you can sign up to get notifications. There are some good articles, and they're almost all written by people with ankylosing spondylitis, which makes them kind of interesting to read and see what others are going through. So the notification came the other day, and I see this title it says Be True To Yourself, Even if it Hurts. I noticed it's written by Jed Finley. Jed was on an episode recently with myself and a number of other people with Ankylosing Spondylitis, Episode Number 57, which was the group discussion on our Ankylosing Spondylitis journey, and I'll have a link to that in the show notes. Jed also started the Facebook group Living with Ankylosing Spondylitisthat has 28,000+ members in it, so it's a very active group, a lot of people a lot of discussions going on, on all sorts of different items. So anyway, he wrote this article, and I started to read it and you know, I agreed with a lot of what he was saying, and I'm just kind of gonna go through it and give my feelings and two cents on it. And the article is titled, Be True To Yourself, even if it hurts. And again, it's available on ankylosingspondylitis.net. and I have a link to that in the show notes. 

So Jed writes, you're walking down the street, you run into someone, you know, they stopped to talk and the first question they ask is, how are you? Well, we've all been there you see somebody, Hey, how you doing? What's it like? How are you feeling? For me, I walk and many of you can relate to this. Walk with a cane and I'm hunched over. So just seeing somebody coming is can be a challenge because I'm looking, you know, my neck is fused down. So to look up, I don't always see who's approaching. And my peripheral vision on the sides is bad. So I've had people say stuff to me and I, I've turned my whole body to look at them. And I think sometimes I might not hear them and they think I'm being rude. And that's not the case. It's that I don't see you or don't hear you. So, again, it's just one of those things that AS just keeps giving and affects us in unique ways. And it continues when you have a chronic illness. This is a loaded question. And it's loaded for T Rex, your friend or acquaintance is not ready for the blast. That is your answer. You say to them something like my back has been killing me for a month. I have four doctor's appointments this week. I'm trying a new medication, but it gives me headaches and my relationship with my spouse is strained because of my illness. He goes on. No, we don't say that. We don't even mention we are doing that great. We say the same thing every time I'm fine. Well, isn't that the truth? If you go into a big rundown of everything you're dealing with, most people are going to check out after like 30 seconds, then you're going to get the obligatory. Uh huh. They've got their own things they're dealing with, in some cases; they ask you how you're doing and they really don't care. They're just being, you know, nice, and that's fine. But you always have to temper it and that's one of the things that stinks about this diseases. Is it just somebody you talked to in passing? Or is it somebody that you might really know, and want to have a little more of a deeper discussion with it, and you have to judge whether they really want to have that deeper discussion, to understand maybe what Ankylosing Spondylitis says, I live in a very small town and recently, I was featured on the front page of the newspaper talking about Ankylosing Spondylitis. This was really great in that I've gotten a lot of local feedback from people that have Ankylosing Spondylitis that I had no clue about. So it's been great to connect that way. And I've had people say, Hey, I saw you in the paper and great article and you know, different things. So it was neat, that people are reading it, and it can bring some awareness and maybe might temper some of that. Well, how are you question, at least locally, because they read in the paper that, hey, he's not doing that Well. So maybe if I'm smart enough, I'm not going to ask him. How is he doing? So I don't know. It's just you think out loud as you read through some of these things. And, you know, it's just kind of how you deal with in our day by day basis, he continues, we know nobody is prepared for the truth, nor do they really want to hear all that is going on. They expect and I'm fine and to move on down the street. I'm fine is our way of protecting them and ourselves. And again, it ties back into the point of; we only have so much energy in any given day, Ankylosing Spondylitis is draining. As it is, do you want to continue to run around and tell everybody how you're doing when they most likely aren't going to listen? Now, that doesn't mean don't be an advocate. Definitely be an advocate, if you choose for educating people on Ankylosing Spondylitis, that might be a article to the newspaper that might be a internet post. It might be coming on and posting and being active in one of the forums like living with Ankylosing Spondylitis. Being an advocate, it can be with people that are just coming on board that don't know anything about Ankylosing Spondylitis, or just got that diagnosis and are nervous and you maybe you've been dealing with it for four or five years and you can say, Man, I remember what it was like when I was in that situation and your words, your response to somebody on a forum, maybe that calming piece that they need to read. Just consider, you know, if you want don't hesitate to, to not be a advocate for Ankylosing Spondylitis. So he goes on, the truth hurts, but why? Why do we feel the need to protect them? I want to share my reasons and afterward I want to hear yours. See if any of these apply to you not passing along pain. He goes, I believe if we're honest with the people in our lives, it would kill them. They aren't ready for this level of pain. This especially applies to family members and others who care a little more deeply. They want us to be well, and they hate that we hurt. Some of them wish they could do more to help us and the fact that they can't hurts. And this kind of ties in recently, you know, with the article I mentioned, when it was putting the paper, I got a like a PDF copy of it that you can find on spondypodcast.com and my stepmom sent it out to some family members. And when my aunt replied to my stepmom she wrote, we knew he was hurting, but we never knew to the extent of it, he hides it so well. We never knew all the stuff he was going through and they shouldn't know all the things I mean, you know, I don't go around and share with everybody unless they ask if somebody asked me, you know, something specific, how was your hip replacement? How would you know? How is your back, I'm gonna probably go into a little more detail. But that's just me. You may not be comfortable doing that. And, and I can certainly appreciate that and, you know, you do what's best for you. So Jed goes on and says, I'm not honest with my parents about my health, they have their own medical issues, and they don't need to be worrying about me as well. Saying I'm fine, is my way of helping them keep things off their plate is not our friends and families fault that we are in pain, why make them feel it? Like it is? Well, I agree and disagree with that to it to a degree. Now, that doesn't mean that in this example of a parents, that you go over and just dump on them. I go over and ask my parents, how are you doing medically What's going on? You got any doctor's appointments? You know, I I want to be aware of what they're going through. I want to be aware of if there's an issue, if they'll tell me, sometimes they don't. And so sometimes you have to make some inferences and make some guesses as to what they're up to. And if they then in turn, ask how I'm doing. I may say, last couple days have been real rough, my back's been killing me or this or that and you just kind of deal with it and take it as it is, you know, I, I've had the communication with one of my parents before about my house, it's not dirty. But there are some stacks of papers around, there's some clutter, and that I know drives him nuts. But guess what, that's me. I don't have the energy all day long to spend it, picking stuff up and try to do the other things I want to get done. So I have to pick and choose the battles of what gets taken care of around the house. And if they don't like it, again, it's not dirty. It's just some stacked up papers that I eventually get to and, and move on. So it's just one of the ways of dealing with it, but I don't try to hide from anybody what what I'm going through. This is a big one though he Jed continues and he says, I just don't have the energy. From my experience. Most people I'm honest with don't want any follow up information. They hear I heard, and they say hope you feel better and move on. However, from time to time, someone wants to know more and after that, they have follow up questions, and I don't have the strength to give all the answers. So somebody might say, Me: You know Ankylosing Spondylitis is a form of arthritis. Them: Is it like rheumatoid arthritis? Me: Kinda, but a little different. And on the questions go until you feel like you should be paid for the med school level explanation you're giving. Well, again, that's where I agree to disagree to it to a extent because there's such a limited number of people in the United States that deal with ankylosing spondylitis. It's not something that is on everybody's radar. They don't know what it is. Sometimes you've got to give them a little bit of information to kind of bring them up to speed. That no, it's not rheumatoid arthritis, it's not osteoarthritis. Those are damaging in their own ways, but they're not ankylosing spondylitis. And the name doesn't help out because we know what it is. But it doesn't tie into like, it doesn't say arthritis in it. But that's because it's more than just arthritis. So, the name can be confusing that the level of information we provide may not always be the amount that somebody needs to comprehend. And on the other end, the person that needs to comprehend it may not really be in a position or have a desire to comprehend. So they just kind of Yeah, whatever and move on. So again, it's where are you going to use your energy in any given day that best helps you that's best for you. He continues, and you might not have all the answers or the ability to stand there as long as they are wanting you to. And that's a big deal. Like, I can't stand very long. So if I meet somebody in a grocery store where I can lean on the cart, fine, no problem. If I'm out on my cane, I've developed like a great little elevator speech, because you got about three minutes before I gotta get going and move to keep moving because I can't just stand there, unless I can find something to sit down on. And then he goes on. I'm all for spreading the word about AS, but sometimes I'm fine, is all I can muster. And again, if that's you, and I'm fine is the best you want to give and can give, hey, that's there's nothing wrong with that. That’s entirely up to you and you give of yourself as much as you want or feel that you can. We're all different and we all have different things we want on any given day, not wanting to be minimized. Jed writes, AS is a very serious condition. So when someone takes your symptoms and tries to treat them like something they're not, it can be quite helpful. He writes, have you tried a vegan diet? Ice and rest do wonders for me? Have you tried and then insert any herbal remedy here. While we are all getting older. He says that last one makes me read. On a side note, I once had a doctor say, we are all getting older, you're just getting older, a little faster than most. He says that's still my favorite comment. At least he gets it. I did numerous episodes that are really good to share with your family if they're just maybe not getting it not understanding it. I've said this in the past that a lot of times, if your spouse or significant other, if they hear you continue to talk about something, they tend to be a little more dismissive of it at times, not exactly the right way to handle it, but that tends to happen quite a bit. But if they hear somebody else talk about it, I believe that that lets them if they listen, it lets them then turn and look at you in a real light. Go on. I'm hearing this person say that they're going through this, this and this. Do you experience this? Let them start to ask you in their understanding, hopefully becomes better. So I've done a number of episodes that you can access to share with your family. I have a link to a collection of episodes down below. But there's ones like, Episode 41: An open letter to my family and friends. Episode 29: Pet peeves heard about Ankylosing Spondylitis, in Episode 28:Five things. I'm tired of hearing about Ankylosing Spondylitis. And then finally, Episode 13: 10 things not to say to someone with Ankylosing Spondylitis. So in the shownotes, I'll have a link to that collection of episodes and you can just share that with anybody and they'll get all four or five of those episodes right off the bat and be able to listen to them kind of just in a chunk, and maybe get a better idea of what you're dealing with on any given day. So Jed continues on with the article. But with those lines, all they're trying to do is minimize and simplify our condition. They may want to legitimately help us. However, they aren't willing to put in the effort. vegan diets and herbal remedies might have helped them or someone they knew with their energy level or sleep. Maybe it even helped with their pain. But as of right now, Ankylosing Spondylitis does not have a cure. And that is what they're looking for a one step and done solution, believe me, if as could be cured with vegetables, I think we might have heard about it. Jed continues on with this section. Quite frankly, I just don't trust you. There are people in our lives who we just don't trust with our condition. Oftentimes, it's a boss supervisor, or the nosy co-worker in the break room. The people who can't handle our reality or might use it for nefarious purposes. Now that I have accommodations under the ADA, I am out about my conditioned with my supervisors. However, that still doesn't mean I'm going to give them every bit of information about how my day is going. And the nosy co-worker. Yeah, right I really don't care, who knows about my abs. But I also don't want to be the subject of gossip. Those are two different things. Well, I no longer am in the workforce. And so I don't worry about co-workers or anything of that nature. I can remember back to times where, before I had gone into under FMLA, with my hip replacements, I was kind of, you know, I would have people ask me how I was doing and they could tell I was in pain and that something was off, but I was real careful about what I said to anybody. And it wasn't until after my hip replacements, when I was on crutches for what ended up being a couple years that I couldn't really hide what that something was going on. Well, there are some workplace accommodations, at least here in the states that were made for me. I'm not sure how anybody else around the world would handle it. Everybody's got different laws and different regulations. So you have to address that or approach it in the way that that is best for you. And then he continues on, you know, try to be yourself. Now that I've laid out the most popular reasons for people telling you are fine. When you are most certainly not going to turn the tables just a little while you are in your full right to share whatever you want. I encourage you to be true to yourself. Your AS life is your life, and you shouldn't censor yourself for the benefit of others. If you give someone the full story about all your pain, appointments, struggles and relationship stresses, and they can't handle it. Do you know whose problem that is? Not yours. Let them be the ones to feel uncomfortable for a change. You are an important person and you deserve people's attention. The fact that someone wants might not have the best reaction doesn't mean you shouldn't share. It actually means you should share more. You are the forefront of the information on movement someday. When Ankylosing Spondylitis is a household name, you'll be part of the reason that happened. And that's very true. Again, we are our own best advocates, whether that be with the doctor as you push for better diagnosis, a diagnosis, better medications, better treatment options, you are the one that has to best approach that and deal with it. And you have to be the one that pushes to always have your best interests at heart. When you're dealing with family, friends, spouses. You have to give them enough information to understand what's going on, but also not to hold that against you or to disregard what you're going through. You are the one that has to always be your best advocate with everybody. And as a side note to that, I did an episode at the end of March episode 43, where I interviewed James Allen, and he developed an app called chronic insights. And I'll have a link to that episode in the show notes. But if you go out to I think at the time, it was only available on the apple platform, but check if you have a Google or an Android phone check to see if it's out there. The app is called chronic insights. And he's building this app up. And right now it's focusing on helping you as an Ankylosing Spondylitis patient, track your conditions on a daily basis. So the app is being designed. James has Ankylosing Spondylitis, and the app is designed for people with Ankylosing Spondylitis at this time. He will be incorporating some other elements into it as he builds the robustness of the app up. But I wanted to let you know that I saw some changes come along some updates as he continues to work on that. So with that said, I hope everybody has a fantastic day. Please do me the honor of going over to spondypodcast.com, signing up for the newsletter. And then if you're so inclined, take a look around. I've got options for picking up a T-shirt there or a sweatshirt; you know a number of different things. So, thank you again. I look forward to hearing from you. Please don't hesitate to go out and contact me through Facebook or Instagram. I'll have the links in the show notes. Take care and have a wonderful week.

www.ankylosingspondylitis.net

Helping others understand Ankylosing Spondylitis - https://player.captivate.fm/collection/9f3e0f6c-7c48-4c1f-9b23-82821fc6bdd3

Episode 43: Interview with James Allen, developer of Chronic Insights app (to track your AS symptoms) - https://player.captivate.fm/episode/9b41f5a0-55c9-4fe6-9ec4-4759a2296f50

If you would like to make a donation to help keep the show on the air, use www.buymeacoffee.com/aspodcast

cf1381fc-08af-43cd-975f-c5d5bf088898Sun, 09 Aug 2020 09:00:00 -040020:05falsefull6262Neanderthals and Biologics, pieces of the puzzle.Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. I'm really glad that you could join me today because we're going to have fun today, we're going to be combining some of my favorite subjects history, modern medicine, and a little bit of speculation mixed in. So stay tuned. This one should be a lot of fun. 

I've partnered up with a couple of really good companies. One is Joy Organics and you can find the link in the show notes. If you use that link. It doesn't change the price of anything for you. It just reverts a little commission back to the show to help keep the show going and hopefully growing and Joy Organics make some of the best organic based CBD products that you'll find whether it be tinctures pills that I take the soft gel tablets, I really like those and also a drink mix that I just put it into a jar water, shake up the water and drink it and it adds a bit of CBD through the day as I drink that water. So it's a great way to help level it out through the day as you're drinking that. So they have all sorts of products, lotions. So check out the link to go to Joy Organics. They're 100% organic hemp grown in the United States is where they derive all their CBD oil from so you can't go wrong going to Joy Organics link in the shownotes. The other one is new. Now, if you have kids cover their ears Foria is an intimacy lotion that is really fantastic and it works. I don't even know how to describe it beyond just that it works. It has a CBD base to it, and you apply it and it helps. So again, go to the show notes where you can access the link for Foria and then go and read about it and see if that fits something that might be of interest to you. Again, no price increases but it does pay a commission back to the show which helps to keep the show going and growing. Thank you. 

So in today's episode by the title, you saw the word Neanderthal and you go, “What does that have to do with ankylosing spondylitis at all?” Well, I wondered the same thing. And then I was directed towards a few interesting articles and I started reading them and it really was a very interesting hypothesis. So about 30,000 years ago, give or take a few thousand years. What we would know as the modern homosapien came wandering out of the continent of Africa as they were migrating north. And as they got into the colder climates, they walked right into and head on confrontations with an ancestor of theirs that was already living there. But that hadn't changed in the hundreds of thousands of years. The Neanderthal was they got there, what you would expect took place, conflict, fighting, death as one type of species tried to basically conquer the other. Which one was going to win? Well, it ended up obviously being humans, you know,Homo sapiens. But did we walk away with a gift or maybe a curse From Neanderthals? Well, let's look at that. It's an interesting hypothesis or interesting series of debates that had gone on around this. So I was directed to a website called Everyday Battle, where there was an article entitled How a weird fetish among our ancestors led to Ankylosing Spondylitis. And so I started to delve into this article and found it to be really interesting, and I'll have a link down below what the studies are showing where now this is from some information that came out in the 2013, 2012 somewhere back in that area. But it was based upon looking at the DNA of Neanderthals and (modern day)humans and what they found in that and what may have carried over to us as modern humans. Studies suggest that Neanderthal genetics may be responsible for autoimmune diseases in modern humans. The author discusses a documentary called Decoding Neanderthals and in that documentary, they talked about discovering in the ancient DNA of these Neanderthals, the HLA alleles, and one particular HLA, HLA-B27 is the main genetic marker that's used to diagnose Ankylosing Spondylitis. It's found in 95% of...]]>Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. I'm really glad that you could join me today because we're going to have fun today, we're going to be combining some of my favorite subjects history, modern medicine, and a little bit of speculation mixed in. So stay tuned. This one should be a lot of fun. 

I've partnered up with a couple of really good companies. One is Joy Organics and you can find the link in the show notes. If you use that link. It doesn't change the price of anything for you. It just reverts a little commission back to the show to help keep the show going and hopefully growing and Joy Organics make some of the best organic based CBD products that you'll find whether it be tinctures pills that I take the soft gel tablets, I really like those and also a drink mix that I just put it into a jar water, shake up the water and drink it and it adds a bit of CBD through the day as I drink that water. So it's a great way to help level it out through the day as you're drinking that. So they have all sorts of products, lotions. So check out the link to go to Joy Organics. They're 100% organic hemp grown in the United States is where they derive all their CBD oil from so you can't go wrong going to Joy Organics link in the shownotes. The other one is new. Now, if you have kids cover their ears Foria is an intimacy lotion that is really fantastic and it works. I don't even know how to describe it beyond just that it works. It has a CBD base to it, and you apply it and it helps. So again, go to the show notes where you can access the link for Foria and then go and read about it and see if that fits something that might be of interest to you. Again, no price increases but it does pay a commission back to the show which helps to keep the show going and growing. Thank you. 

So in today's episode by the title, you saw the word Neanderthal and you go, “What does that have to do with ankylosing spondylitis at all?” Well, I wondered the same thing. And then I was directed towards a few interesting articles and I started reading them and it really was a very interesting hypothesis. So about 30,000 years ago, give or take a few thousand years. What we would know as the modern homosapien came wandering out of the continent of Africa as they were migrating north. And as they got into the colder climates, they walked right into and head on confrontations with an ancestor of theirs that was already living there. But that hadn't changed in the hundreds of thousands of years. The Neanderthal was they got there, what you would expect took place, conflict, fighting, death as one type of species tried to basically conquer the other. Which one was going to win? Well, it ended up obviously being humans, you know,Homo sapiens. But did we walk away with a gift or maybe a curse From Neanderthals? Well, let's look at that. It's an interesting hypothesis or interesting series of debates that had gone on around this. So I was directed to a website called Everyday Battle, where there was an article entitled How a weird fetish among our ancestors led to Ankylosing Spondylitis. And so I started to delve into this article and found it to be really interesting, and I'll have a link down below what the studies are showing where now this is from some information that came out in the 2013, 2012 somewhere back in that area. But it was based upon looking at the DNA of Neanderthals and (modern day)humans and what they found in that and what may have carried over to us as modern humans. Studies suggest that Neanderthal genetics may be responsible for autoimmune diseases in modern humans. The author discusses a documentary called Decoding Neanderthals and in that documentary, they talked about discovering in the ancient DNA of these Neanderthals, the HLA alleles, and one particular HLA, HLA-B27 is the main genetic marker that's used to diagnose Ankylosing Spondylitis. It's found in 95% of the people with AS. Now, that doesn't mean that if you don't have it, you're not going to get Ankylosing Spondylitis or even non radiographic. This is just saying that this gene is found in the predominance of the people that have this disease and as we know, HLA-B27 is an antigen and it helps direct how our white blood cells work. And when you have Ankylosing Spondylitis, that HLA-B27, it malfunctions that it gets messed up and this causes the immune system to basically attack itself. So where does alleles come from? And how did it get to be part of our genetic code? If it can screw some of us up and cause us so much great pain? Why would the body build it? Why historically, why would genetically it come to play to say, Hey, we're going to, we're going to make some people have this great amount of pain, there must be some benefit that it serves, or there must have been some benefit that it served in the past. And the answer may come from being interbred with Neanderthals. Now, this still hasn't been completely documented. And for sure, this is just a “what if”, so please take it with a grain of salt that it's just a what if and I thought it was kind of interesting and a great way to look at the disease from a historical perspective. We know that Neanderthals were the first, you know, one of the first human like species to leave the African continent. And they diverge from what was a common ancestor coming out of Africa around, you know, 600,000 years or so ago, and they had to adapt to a new locale outside of the African continent, and that new locale would be the European area, Russia, Asia, that area, it's cold, they aren't used to the cold in Africa, different types of animals, different types of bacteria in the soil, everything was different than what their ancestors have had to deal with and they had to come about and develop immunities to all that. So in this is where the weird fetish, you know, comes in Neanderthal genetics are, you know, more common in populations of European and Asian descent. So that same population that shows a prevalence of Ankylosing Spondylitis, so it implies that our ancestors were having sex with Neanderthals and do this you know, we got some homosapien walking down the trail, middle of the woods looks over and sees this hot lookin, hairy humanoid, who can't speak with him, but the birds and the bees come into play. And what eight, nine months later, here comes this little baby that's carrying 50% homosapien DNA and 50% Neanderthal DNA. Boom, just lik e that Neanderthal DNA is introduced into the homosapien genetic line and maybe that female is absorbed into the homosapien tribe and that baby grows up looks different than the other Homo sapiens, but breeds with a homosapien. And eventually, the lineage looks more and more homosapien. But that female Neanderthal DNA is still in each one of those ancestors and just a smaller and smaller piece. And if that little bit of DNA encompassed the HLA-B27 gene that the homosapiens coming out of Africa didn't have maybe that's where it came from? Is that we're looking at and why was it developed? What did these HLA-B27 or any of these HLA's benefit the Neanderthals, and that, you know, they wouldn't have had them in the southern part of Africa where the Homo sapiens were developing? Well, let's take a look Neanderthal and Ankylosing Spondylitis? Well, Neanderthal remains have shown evidence of arthritis. They've done genetic sequencing on the remains that they found. And they have shown that Neanderthals had a predisposition to diseases like psoriasis, Crohn's and lupus, though there is currently no direct connection confirming that HLA-B27 in particular is of Neanderthal origin. Inheritance of the HLA alle in our ancestors means that Neanderthal interbreeding could be to blame for your Ankylosing Spondylitis diagnosis. So now how does this help you in our everyday battle against the disease? For one thing, it might explain why certain types of diets are better for reducing flares reducing the symptoms of Ankylosing Spondylitis. You know, if you cut out the carbohydrates, things like the Paleo Diet, Raw Diet, you know, No Starch Diet, No Sugar, you know, all those can have some very beneficial results for people. With ankylosing spondylitis seems no accident that these diets tend to mimic what our ancestors were eating at the time. So if you're at all curious about how much of Neanderthal DNA you may have, you can go out and do a 23andme test, which is where I got my results from it said in my results, I was higher than 66% of everybody else that they had done 23andme tests on, I found that kind of interesting, you know, they'll sequence your DNA, it's really easy. You basically just spit in a little tube, you know, 15 times or so and send it in and, and that's it. And then you'll have scientific proof that you have some or no Neanderthal DNA.  

On to the main portion of today's episode. I hope y'all like that little rundown on Neanderthals. I just thought it was kind of interesting. 

So, in looking through some of the forums on Facebook, I've seen a lot of questions either; should I start biologics? I've just Just started biologics, I need to switch a biologic and a lot of what do I expect? Well, it's really dependent upon you, there's no way to say, here's what you're going to expect. And there's not really even a way to generalize what you're going to feel because we all respond to these things differently. But let's kind of look at what the Axial Spondyloarthritis is, and Ankylosing Spondylitis as well as non-radiographic axial spondyloarthritis. But there's some interesting information on biologics for the non-radiographic for the moment we're going to focus on the Ankylosing Spondylitis. So it is a chronic condition. Some categorize it as autoimmune in other spots, you'll see it as auto inflammatory. So it basically is a disease that attacks the joints in your body, for lack of a better term the hips, spine, your knees, your feet, shoulders, it can really attack anywhere. Me personally, mine came on very, very heavy in my hips. When I was a kid, and has now as an adult progressed through my spine, where I know many of you in talking, have told me that it hits your spine yet sore back all the time and has moved to your hips. My mind kind of went in reverse from a lot of people. And this condition can fuse your spine, fuse your hips, be extremely painful cause lack of mobility, and possibly even leading to going on disability where you can't work. In my case, I'm in the United States. And I had both hips replaced by the time I was age 23. And then fast forward by age 40, the left hip worn out had a hip replacement. It was actually supposed to be a revision, I went in for the revision, and he saw the all the extra damage in there that wasn't visible on the X ray and I ended up having to do a hip replacement that didn't take. About three weeks later I went back in for another left hip replacement. So I had two hip replacements done in a matter of a month in 2010. It's now been 10 years since, and I'm still dealing with some issues of sciatic nerve damage, drop foot, things of that nature on my left leg. So it's, it really can affect us all in just numerous ways and some people will get it and have very mild conditions and something like a biologic might not be appropriate or helpful for them at all. So how do I know if a biologic will work for my Ankylosing Spondylitis? Well, you generally don't. But one of the ways they look at it is there's all these different medications that you can start off on that are over the counter medications, like Aleve, ibuprofen, acetaminophen, those may be ways to help how you first start to control. The initial stages are symptoms of Ankylosing Spondylitis, they will knock some of that inflammation down, but eventually for many of us that inflammation rises to a point where the simple over the counter medications just can't work anymore. So maybe they try something like a Celebrex or something a little bit stronger to help that may help you a Sulfasalazine, Meloxicam, Methotrexate. There are a number of different medications that they can try. Well, at that point, your doctor might say to you, I think it's time to look at biologics or if you're in certain countries, they might use a term called biosimilars. And those are a version of the biologic that if you listen back to Episode 51, (link below). When I discuss an interview Michael Mallinson, we talked about axial spondyloarthritis and in there; Michael does a really good discussion on the difference similars and differences of the biologic and the biosimilar. So I would encourage you to go out and listen to Episode 51 for a more detailed explanation of that, but as we go and look at the biologics, I'm going to start off with just the biologics. I won't jump into the biosimilars in this particular piece. But there really are six main names that you'll hear in the biologic world. When you start to discuss them. You'll hear of course, Humira and Enbrel, Cimzia, Simpony, Remicade and Cosentyx. There's another one out now that you hear quite a bit called Taltz and if you listen to Episode 25 that I did back in December (link below) that's titled New Guidelines for Treating Ankylosing Spondylitis. In there I did a discussion on the kind of protocol that they're (Rheumatologists) trying to put in place so that as patients with axial spondyloarthritis, when we go into rheumatologist, we should all get about the same type of treatment, the same type of recommendations now they'll vary because there could be different things the doctor sees that make you A little bit different than others, but it's really just trying to standardize the level of care that we receive as patients. So again, that's Episode 25. (link below). When a doctor is looking at the biologics for you, and how to assist you with feeling better, they're going to kind of look at these five things, as determinations of your ability to use biologics or ability to stay on biologics. And again, as with any type of medication, and treatments. I'm not a doctor, I'm just relaying some very generic things that should be helpful to you to go and have that discussion with your doctor. You may be concerned unsure of where to start even nervous to talk to your doctor and don't be and hopefully an episode like this can help you formulate the questions you want to want to bring up to your doctor.

Number one: Did other medications provide relief? Doctors don't always recommend biologic therapy for everyone with as typically biologics are for people with moderate to severe as in that if they haven't responded to other medications, this makes a next logical step. They're generally not the first line of treatment for this condition. But depending again, on your severity, they may be the medication that your doctor says here, we're going to skip all this other stuff and go right to biologics. That's where the doctor’s discussion and knowledge of you is going to come into play. Some people can improve their symptoms by just making lifestyle changes. These can include you know, being more physically active, which leads to increase joint flexibility, losing weight to reduce pressure on joints, learning to control stress, you know, stress can trigger inflammation in the body. So if some of those have been tried along with maybe over the counter medications or something stronger like Celebrex, and they're not working then The next step is the disease modifying antirheumatic drugs DMARDs that include biologics, and these can help to improve your condition and may very well work for you. 

Number two: Can I keep up with scheduled treatments? That's the thing; biologics are not like a pill that you just take once in the morning. There is a usually a shot involved to it and biologic therapy isn't available, you know, as I said, in a pill or oral form. Instead, you'll receive infusions at your doctor's office maybe a few times a year, or you'll give yourself your self administered shots, either using a regular needle syringe, or a almost like an epi pen, a self injector, an auto injector pen. And so these biologic treatments target proteins in your body with the purpose of suppressing your overactive immune system and calming your body's inflammation response to what they think is going on what they think they need to attack. For this therapy to work, you have to keep up with your scheduled injections and/or infusions. If you stop treatment, not only can your symptoms come back, but also that biologic that you were experiencing relief with may not work again for you. You may have to then start going hunting for a new biologic to work for you. So, once you start on, there's something you're going to stay on. And keep in mind that biologics aren't a cure for a AS, there is no cure for this condition. They simply serve to suppress or bring down that immune system and thereby help to hopefully slow and or stop the inflammatory attacks on your joints and making your body deteriorate. 

Number three: Will I take other medications with a biologic? Possibly, if you're a candidate for a targeted therapy, your doctor may prescribe only a biologic or you may receive a DMARD to take with your biologic treatment, even though biologics are effective for treating AS, some people don't respond to the treatment alone and need a combination of therapies. You can't take two biologics at the same time, but it is generally safe to combine a biologic with an anti rheumatic drug. So you might take it in combination with a Sulfasalazine or a Celebrex or Methotrexate. There's a number of ways that medications can be combined to help you. I took Celebrex along with Cosentyx for several years and finally had to stop all NSAIDs due to some kidney damage from long-term use and in some cases, abuse of NSAIDs that I did when I was younger to try and relieve pain. So now I'm just strictly on Cosentyx for the AS that I deal with. 

Number four: Who shouldn't take a biologic? Well, despite the effectiveness for many people that use the biologics, it's like all medications. It's not right for everyone and your doctor is the person that is going to help you determine if this medication is appropriate for you. Even though biologics aren't like traditional immunosuppressants that suppress the entire immune system, they can compromise your immune system and make you susceptible to illnesses and certain illnesses and infections. It also becomes harder to fight infections while taking biologics. Me personally, I've been on Cosentyx for almost three years now, and I do notice that I get sick less often I get my flu shot every year, and then I really don't get sick. But if I get a cut on my arm or leg or whatever, it takes a long time for that to heal, probably two to three times longer than what I think the average person would take to heal up. So I put some neosporin on maybe a bandaid depending on the type of cut but it really I do notice that cuts and things take a long time for me to heal. Your doctor may not recommend biologic therapy. To you, if you have a weakened immune system for any reason, you know, for instance, if you're being treated for any type of cancer or you've been diagnosed with HIV or Hepatitis C, that may rule out biologic treatments for you at this time completely, the immune suppressing effect of biologics could worsen some of these existing diseases. So therefore, if you have an active infection, you should wait until the infection clears before beginning treatment, and then also, you know, long-term use of biologics may increase the risk of certain cancers. I say this because it is listed as a side effect]]>60a3470c-4c7e-40b9-b742-38aeff01529aSun, 02 Aug 2020 09:00:00 -040026:46falsefull6161Yoga for AS with Geoff Lindsay and Jamie BoderJayson:

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today I'm very excited because we're going to touch on a subject that I get a lot of requests and information about, and that is yoga, specifically yoga for people that have Ankylosing Spondylitis. And today I've got both Jamie Boder and Geoff Lindsay on. Jamie is an instructor and teaches people yoga right now virtually. And he's located in England. And Geoff is an instructor , and  has his classes that he shows and demonstrates different processes. So Gentlemen, welcome.

Jamie Boder:

Thanks for having me, Jayson.

Jayson:

It's great to have you guys. So, Jamie, tell me a little bit. You also have Ankylosing Spondylitis. Tell me a little bit about your diagnosis. And then were you into yoga prior to your diagnosis or was that something you came to afterwards?

Jamie Boder:

So I started experiencing some things when I was about 14 and was put to growing pains and then other different conditions, lots of different lists. And eventually, I asked my GP, I need to see a rheumatologist just how to interlink. And then the day I saw her, she said, Yeah, I'm pretty sure it's this condition. And that was when I got to about the age of 18. That's when I got my diagnosis. And at first, it was a lot to take in. And I don't think the Internet can always be a very helpful place to learn about the condition if you're new to it, but that was my position. And the biggest thing that I was really thinking about was being a skateboarder half of my life, started skateboarding when I was like six years old, I was like, I can't stop. This isn't my big passion at the time. It was something that you know, competed and a very huge part of my life. So anyway, I went to a support group, and I wasn't very up for it, but I kind of forced myself to go, and that's where I met Geoff. And Geoff looked really in a good place, physically and just had something, you know, looks very healthy and I asked him, What were you doing, Geoff, you know, you must be doing something different from other people. And he told me about yoga. And it was that day, I went home and literally dedicated myself to practicing yoga for about, yeah, just pretty much every day for a year. I just didn't stop and yeah, transformative, to say the least. So that's a little bit about my journey with yoga and AS and have been practicing ever since and now teaching as well.

Jayson:

So how many years has that been now?

Jamie Boder:

So it's been about five years of being practicing yoga consistently, nearly every day.

Jayson:

So with that, have you noticed any worsening like in your x rays that your GP will do?

Jamie Boder:

So when I first started having symptoms I was in such a lot of considerable pain and struggled to. I had a bit of a limp and couldn't sweat definitely couldn't do any sort of sports, just essentially very desperate. And for the last two years, I've had stiffness but I haven't had any pain whatsoever. And that's was a bit you know, huge huge for me. So yeah, I'm in terms of x rays and things like that. I last had an xray about two years ago, and there's things are looking pretty good.

Jayson:

Now, are you on any medications or biologic anything to help with that?

Jamie Boder:

I haven't been for on biologics for a year. I stopped biologics about a year ago, because I'm not for or against medication. I know medication can work very well for some people. But for me, I was at the point where I didn't feel like I was in need of it. And therefore I stopped taking So not on at the moment, but something me and Geoff will always emphasizes, if you're on medication, yoga can help with that medication with it's all integrative. So we're not we're not against using medication when necessary.]]>Jayson:

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today I'm very excited because we're going to touch on a subject that I get a lot of requests and information about, and that is yoga, specifically yoga for people that have Ankylosing Spondylitis. And today I've got both Jamie Boder and Geoff Lindsay on. Jamie is an instructor and teaches people yoga right now virtually. And he's located in England. And Geoff is an instructor , and  has his classes that he shows and demonstrates different processes. So Gentlemen, welcome.

Jamie Boder:

Thanks for having me, Jayson.

Jayson:

It's great to have you guys. So, Jamie, tell me a little bit. You also have Ankylosing Spondylitis. Tell me a little bit about your diagnosis. And then were you into yoga prior to your diagnosis or was that something you came to afterwards?

Jamie Boder:

So I started experiencing some things when I was about 14 and was put to growing pains and then other different conditions, lots of different lists. And eventually, I asked my GP, I need to see a rheumatologist just how to interlink. And then the day I saw her, she said, Yeah, I'm pretty sure it's this condition. And that was when I got to about the age of 18. That's when I got my diagnosis. And at first, it was a lot to take in. And I don't think the Internet can always be a very helpful place to learn about the condition if you're new to it, but that was my position. And the biggest thing that I was really thinking about was being a skateboarder half of my life, started skateboarding when I was like six years old, I was like, I can't stop. This isn't my big passion at the time. It was something that you know, competed and a very huge part of my life. So anyway, I went to a support group, and I wasn't very up for it, but I kind of forced myself to go, and that's where I met Geoff. And Geoff looked really in a good place, physically and just had something, you know, looks very healthy and I asked him, What were you doing, Geoff, you know, you must be doing something different from other people. And he told me about yoga. And it was that day, I went home and literally dedicated myself to practicing yoga for about, yeah, just pretty much every day for a year. I just didn't stop and yeah, transformative, to say the least. So that's a little bit about my journey with yoga and AS and have been practicing ever since and now teaching as well.

Jayson:

So how many years has that been now?

Jamie Boder:

So it's been about five years of being practicing yoga consistently, nearly every day.

Jayson:

So with that, have you noticed any worsening like in your x rays that your GP will do?

Jamie Boder:

So when I first started having symptoms I was in such a lot of considerable pain and struggled to. I had a bit of a limp and couldn't sweat definitely couldn't do any sort of sports, just essentially very desperate. And for the last two years, I've had stiffness but I haven't had any pain whatsoever. And that's was a bit you know, huge huge for me. So yeah, I'm in terms of x rays and things like that. I last had an xray about two years ago, and there's things are looking pretty good.

Jayson:

Now, are you on any medications or biologic anything to help with that?

Jamie Boder:

I haven't been for on biologics for a year. I stopped biologics about a year ago, because I'm not for or against medication. I know medication can work very well for some people. But for me, I was at the point where I didn't feel like I was in need of it. And therefore I stopped taking So not on at the moment, but something me and Geoff will always emphasizes, if you're on medication, yoga can help with that medication with it's all integrative. So we're not we're not against using medication when necessary. And sometimes this happens in holistic worlds where they say, right, this is where this is our approach. You should stop all your other approaches. What we're saying is, this is a tool that you can use, you can harness and you can apply to your current life situation. And that's where things become very empowering.

Jayson:

Now, Geoff, so you've been practicing yoga for how long?

Geoff Lindsay:

About 30 years, a little over 30 years. I'm now 71. I started going to a yoga class once a week when I was about 40. I at the time was undiagnosed. I've been having symptoms for about 17 years. I started when I was 24. Then I found that yoga was making me feel good. It was relieving my pain. And I didn't understand why that was at all. But as we all know, it's an illness that generally progresses and it got to the point where I couldn't go to yoga. I couldn't go to class, I couldn't lie down, I couldn't sit down. My score on my overall disability level went up to about 8.5 out of 10, which was pretty bad. So then I get diagnosed, and I get put onto medication and medication was like a magic bullet for me, instant pain relief. I also then went on to a two week AS rehabilitation course at the Royal National Hospital for Rheumatic Diseases in Bath, England. And that course has now been running for about 40 years. I've been on it three times and on that course I learned that when we have AS, we have inflammation both in the joints themselves, and also in what are called the enthesitis, which is where, the ligaments and tendons and muscles join onto the bone. And when you get inflammation in the joints, and in the enthesitis, stretching, elongating extending unfolding, literally breaks up that inflammation. So that's why going to yoga all these years, I felt so much better. So in combination with the medication and continuing yoga, I was feeling really good and basically my AS has not gotten any worse in the last 10 years. The X rays, so no worsening which I'm told is quite something for a 71 year old. I have an active life. And because I practice yoga regularly and I do the kind because I'm so experienced now say that I've been doing yoga For more than 30 years, so I kind of know what I can do and what I can't do. And what's good for me and what isn't, I can like now I've been sitting for 20 minutes, I'm starting to get an ache in my back. And I, I can do a couple of twists, I can do a couple of poses, and I can relieve that pain. After we've done this session. When I've been sitting down for a long time, I'll do maybe half an hour's whole body yoga, and that will relieve my pain for the rest of the evening. So I guess our message is that a young guy and an old guy, we've both discovered that yoga can be modified for AS, it can be made safe. The good thing about yoga is that people will stick at it because you can go to a yoga class anywhere in the world. So if you choose your style of yoga, wisely, if you go to a beginners level, you go to Hatha Yoga, that's the safest way and you choose your teacher well, then people stick at it generally. There are benefits. Of course, there are risks. So I don't advocate anybody doing anything that compresses the spine. So for example, headstand shoulder stand, something called the plow. And for most people, there are modifications which need to be done. For example, everybody thinks of yoga when you're sitting cross-legged on the ground. I can't sit cross-legged on the ground very easily. You just move your feet a little bit further in front of you and sit on the block or sit with your back to the wall and you can still get the benefit of some of the stretching and extending and elongation that we do in yoga poses.

Jayson:

Okay, so a big thing here in the States has been classes because of the aging population, has been the what are termed senior yoga classes, which I've always kind of termed those as a arthritic yoga classes well, only because they really try to emphasize maybe sitting down and doing different things from a seating position, some basic stretching. And I've always kind of thought that's a good spot for somebody say that's very fused and in my condition versus somebody like Jamie, who, you know, skateboards and is a very active young man, that stuff would kill me. So, is it fair to say when you're looking for somebody that's a yoga teacher? And is it fair to say, when you go in and talk to the teacher to say something like, do you have experience with arthritis or ankylosing spondylitis? Are you really shopping for somebody that understands the condition, correct?

Geoff Lindsay:

Absolutely. Yeah. My vision is that, you know, when you're diagnosed, you're being told basically, you've got a painful, incurable, progressive, invisible disease of the autoimmune system. That's pretty bad news. Can we have some good news? Can we be told that out there, there is a yoga teacher who is qualified in yoga AS. Now the Arthritis Foundation in the States and here in England offer the class, Yoga for Healthy Lower Backs. They both set up courses for yoga teachers and for students with yoga for patients. So that the Arthritis Foundation is mainly for people with osteo and rheumatoid arthritis, the Yoga for Healthy Backs in England, it's not specific to AS so we need a kind of yoga teachers do and yoga students do short of that. I don't think it's right to say to people just go to any old yoga class, you need to get somebody who is qualified, experienced and on our Facebook page on our group Yoga AS you can join that if you have AS we have a series of resources on what kind of yoga is right for you, how to choose a teacher, how to choose a class, all of those things, there's a lot of detail in that. But basically find a qualified teacher, ring them up, speak to them, explain your condition to them. They may not know what AS is, and I have found this, so you do have to be extremely careful.

Jamie Boder:

Yes. So my points that there is, in terms of finding a teacher, sometimes it could seem overwhelming to be like, Okay, well, I want to get into yoga, and I've not done yoga before. It's a big step to then go and start, you know, trying to find people but the next steps you can do is reaching out to us. You can get to know what yoga can really be catered for you. You can join our community learn more about how yoga can can be modified to see your practice and then once you get the ball rolling, and you start seeing benefits and how you feel Then that's a real motivator to then go, do you know what I want to find a teacher in my local area, I want to find someone who can take this further. So with that being said, if you want somewhere to get started, reach out to me and Geoff, and then from there, we can work with you. But there's also, you know, there's some amazing teachers out there as well. One thing that to get, you know, the we're excited about is we're working on a series of whole yoga series, and online video series, which is very in depth, which will be another great resource to get started with and use as a tool for those who you know, and especially during these times, getting a teacher in person will fluctuate in difficulty. So having somewhere to start, if you're listening to this and thinking, Well, I have not done yoga, but this looks like something I want to do, you know, reach out to me and Geoff and you know, that's a great place to get started and you know, you can go from there. And with me, I found that because I started realizing how important this was. I took it very seriously. And I think once you realize the benefit, you will. And going back to Geoff's point about styles of yoga, we do advocate what's known as Hatha style of yoga. And that's because it's very much focused on understanding the movements and the correct alignment before jumping into them. That being said, I very much go by the mantra that if your body is able to move in a certain way, and you feel comfortable doing don't feel like you can't do other styles of yoga, but you need to start by understanding what works for you first, and that's where you need to start with a level that's very adjusted very basic. And then from there, your practice can grow and evolve.

Jayson:

And what's that style called again?

Jamie Boder:

Hatha, sometimes or sometimes pronounces Hatter, and it's essentially a call and response style. So the teacher will show you or show the student, the posture, the student observes. And then they will, the student will try it out for themselves. And that's why our videos, you watch the video, you look at the posture, and then once you understand it, you copy it, instead of just trying to kind of think your way through it. And that way you can emphasize safety.

Jayson:

Okay.

Geoff Lindsay:

Okay, so what we've actually done about that, Jayson is we've produced two films, one called First Steps, and the one called Next Steps. And Jamie has a version of those two and I have a version of them. And we're planning on another three, so we envison about five different levels in total. That was what we thought the feedback that we're getting is that we need something even simpler than First Steps. We need to do more stuff that's suitable for people who've, because of the pain; they have become sedentary in their behavior. So they're really starting at a point. Before First Steps, so we think we're going to have to do something there. People are asking for shorter videos, 10 minutes slots. And they're also particularly asking for yoga, which helps with pain in the sacroiliac joints. So we aren't just talking about yoga, we've already got four films out there that people with AS can follow. It's yoga modified, but we recognize that there are such a wide range of presentations. Comorbidities like hip replacements, like you can have osteoporosis, I have recurrent uveitis. So the Yoga has to be modified for the point that somebody comes to it. So Jamie was waiting, he came to yoga he was 19 still very, very mobile. For a lot of people in England anyway, the waiting time for diagnosis is about eight years. If you've had all that pain for eight years and like me, you had to stop playing football, running and dancing and all the rest of it. You don't come to it at the point where every other every person is of the same age. So we recognize there are different levels. That's why we've got those films and you can find those films either on YouTube at Yoga for AS, or on our Facebook group, which is also Yoga for AS. We've now got 360 people from around the world in our Facebook group.

Jayson:

And I honestly don't know as as I age and look at just the economics of Ankylosing Spondylitis. I don't know why when somebody is diagnosed now biologics are expensive and the medications are expensive. The lost wages are expensive. The disability is expensive. Everything around this disease is expensive to not only the person with it because it robs them of their life, their livelihood, and their current and potential future productivity. If I was a health care provider, you guys have the NHS National Health Data site. Yeah, here in the States we have different health insurance companies and so forth. I don't know why, Jayson, you were just diagnosed with ankylosing spondylitis. Here's a biologic and here's a prescription for a yoga class set up by the health company. Hey, if you want to stay covered, you have to go or some form. I'm not telling you to go out and play American football or rugby or soccer or something that I'm not asking you to go get hurt. I'm asking you to go spend an hour a week stretching. Go more if you want. You know, they could theoretically have an instructor in there five days a week you could go one day a week, you can go five days a week, you can, whatever it's open. And to me that would be far cheaper in the long run then continuously writing scripts for biologics, pain meds, disability policies, you name it.

Geoff Lindsay:

Yeah. And we would very much like I mean, Novartis are already doing series, Living with AS with the singer from something(Imagine) dragons. We think that some of the medication providers should be interested in what we're doing, because if we are helping the medication to work, there are better outcomes for those health care providers. And so it works two ways. If, for example, my anti-TNF medication which I take once a week, if that works longer, because I'm helping the medication to work, then that is better for those medications providers. So if there are any medication providers out there who would like to talk to us, we do need some funding, because we need to take this on to the next level. There is a global interest in what we're doing. Now we have had Facebook page grow enormously in the last six weeks, we've got hundreds of people and people joining every day from all over the world. And we have some very, very severely disabled people, not only people with AS, but also their husbands and wives as well, which is something, which is really important consideration. You will stick at something if you're getting support from around here. So if somebody says you've got to do this fitness prescription, but it involves me going off into my lonely room with my horrible diagnosis and doing something called exercises I'm not going to do it and people don't do it. But if you saying, I'm going to do this with your wife, then your wife understands about your pain and what helps you relieve your pain. And it's a nice thing to do. So, you know, we're growing here.

Jamie Boder:

Just add to that point you can practice knowing that there are other people out there they're also using yoga as a tool for AS, so you know, for example you might not be in a you might not be married, you might live on your own, but you can know that there's a community of people worldwide that are practicing Yoga for AS and that's a very empowering thing. And I think one thing that I really mean is Geoff is very passionate aboutAS you know, knowing that there is so much we can do, and a big step towards it is you know, a regular yoga practice in a way that is empowering. You're not in years sometimes people were given an exercise sheets and told to go and exercising, that's hard to stick to hard to be accountable. But when you have that level of accountability, it can make a big difference. So that's why community is very important. Even if it's virtual, it's still a powerful tool.

Jayson:

I see it satisfying two things because, as I mentioned with Geoff, the ability to get a prescription and go to a class, but also the the isolation feature, if once or twice a week, I'm going to a yoga class and not going from work and going home. I'm staying out mentally stimulating myself as well as physically stimulating myself and not falling into the doldrums of I'll just go home and sit in front of the TV and eat and I'll maybe I'll stretch but as you said there's no accountability. Whereas if I go out, and I even though that instructor is not going to flog me if I don't, you know, do my exercises, there's still that level of accountability. Because you don't want to look like the worst person in class, you want to look like you at least can, in some form or fashion, participate, but you want to belong. And again, I look at it more as a mental stimulation. And again, from an insurance standpoint and an NHS standpoint, the Canadian healthcare system, you might not end up on more medications, all of this works to try and keep you off these medications, which are expensive. They're just flat out]]>74d73997-efdd-4029-bf8e-ae413569b535Sun, 26 Jul 2020 09:00:00 -040043:11falsefull6060Fatigue - Fighting the BattleWelcome to this week's episode of The Ankylosing Spondylitis Podcast. This week's topic is something has been a huge challenge for me this week fatigue.

But first, I want to welcome the new listener from Guatemala, which marks the 95th country that the show has been downloaded in. And also, don't forget to head over to spondypodcast.com to sign up for the Whenever I feel like it newsletter. I'm hoping to get one sent out next week. And check out the T-shirts and stuff available on the website. The items are at this time available in the United States and Europe, with more countries coming soon. Also check out the new facemasks I made available. I also wanted to thank a couple of companies that I've partnered up with to bring some great CBD based products. The first is Joy Organics. They're an awesome company that makes CBD based products made from 100% hemp from America that has all been organically grown. Also wanted to welcome Foria which makes an amazing CBD based intimacy oil. These two companies are fantastic partners with the show and I can attest to the benefits of each company's products. 

So let's talk fatigue. This week has been just quite the challenge. I've been just tired and worn out all week regardless of the amount of sleep I get. I do wear part of the night of C-pap machine when I sleep in my bed, but there's times when I get up and I go out and sleep in the recliner that I have. So I don't have a C-pap to wear out there. But I'm looking at like a mobile travel c-pap option, a smaller machine that I can keep in the living room so that I wear when I'm sleeping in the recliner. And it's just been an amazingly challenging week, even to the point where the thought of recording the podcast has just been really hard. Part of it is probably being cooped up from the COVID stuff and top that off with some fatigue and it's just been really a rough week. And I noticed that I'm not alone in those thoughts. I was going through the different boards on Facebook. And I noticed there's a lot of question about how do I deal with fatigue? What do I do? I can't get any energy to do anything. And so I was thinking about that and I came across this article on tips for beating Ankylosing Spondylitis fatigue. Some of these we may be doing as a collective group. Others might be something new for you to try. So let's see what we got here. 

Ankylosing, Spondylitis and fatigue. Well, Ankylosing Spondylitis is known for all the complications related to inflammation, the spine, the hips, you know, basically any of your joints that it can affect but primarily spine and hips. Well, the pain and discomfort may disrupt our daily activities. You could be contending with another debilitating side effect, which is fatigue. According to the National Ankylosing Spondylitis Society, fatigue is one of the most common complaints among AS patients. Excessive tiredness can be attributed to AS, but it can also be a side effect. 

Inflammation and Fatigue. The biggest culprit behind AS related fatigue is the inflammation. Inflamed tissues, whether it be in your hips, your spine, ribs wherever release a small protein based chemical called cytokines. Considered to play a major role in fatigue, pain, psychological disturbances, these cytokines are produced by cells in your immune system react in your body similar to those produced when you have a cold or a flu. This is why you may feel like you have a viral illness when you really don't it's just the fatigue. Treating inflammation with medications can help to reduce the excessive fatigue, but keep in mind that prescription drugs that contain opioids or coding may increase tiredness. Aim for sound sleep. In some cases, fatigue isn't exactly related to the inflammation. You know, the pain and discomfort can make it difficult to fall asleep at night, adding fuel to...]]>Welcome to this week's episode of The Ankylosing Spondylitis Podcast. This week's topic is something has been a huge challenge for me this week fatigue.

But first, I want to welcome the new listener from Guatemala, which marks the 95th country that the show has been downloaded in. And also, don't forget to head over to spondypodcast.com to sign up for the Whenever I feel like it newsletter. I'm hoping to get one sent out next week. And check out the T-shirts and stuff available on the website. The items are at this time available in the United States and Europe, with more countries coming soon. Also check out the new facemasks I made available. I also wanted to thank a couple of companies that I've partnered up with to bring some great CBD based products. The first is Joy Organics. They're an awesome company that makes CBD based products made from 100% hemp from America that has all been organically grown. Also wanted to welcome Foria which makes an amazing CBD based intimacy oil. These two companies are fantastic partners with the show and I can attest to the benefits of each company's products. 

So let's talk fatigue. This week has been just quite the challenge. I've been just tired and worn out all week regardless of the amount of sleep I get. I do wear part of the night of C-pap machine when I sleep in my bed, but there's times when I get up and I go out and sleep in the recliner that I have. So I don't have a C-pap to wear out there. But I'm looking at like a mobile travel c-pap option, a smaller machine that I can keep in the living room so that I wear when I'm sleeping in the recliner. And it's just been an amazingly challenging week, even to the point where the thought of recording the podcast has just been really hard. Part of it is probably being cooped up from the COVID stuff and top that off with some fatigue and it's just been really a rough week. And I noticed that I'm not alone in those thoughts. I was going through the different boards on Facebook. And I noticed there's a lot of question about how do I deal with fatigue? What do I do? I can't get any energy to do anything. And so I was thinking about that and I came across this article on tips for beating Ankylosing Spondylitis fatigue. Some of these we may be doing as a collective group. Others might be something new for you to try. So let's see what we got here. 

Ankylosing, Spondylitis and fatigue. Well, Ankylosing Spondylitis is known for all the complications related to inflammation, the spine, the hips, you know, basically any of your joints that it can affect but primarily spine and hips. Well, the pain and discomfort may disrupt our daily activities. You could be contending with another debilitating side effect, which is fatigue. According to the National Ankylosing Spondylitis Society, fatigue is one of the most common complaints among AS patients. Excessive tiredness can be attributed to AS, but it can also be a side effect. 

Inflammation and Fatigue. The biggest culprit behind AS related fatigue is the inflammation. Inflamed tissues, whether it be in your hips, your spine, ribs wherever release a small protein based chemical called cytokines. Considered to play a major role in fatigue, pain, psychological disturbances, these cytokines are produced by cells in your immune system react in your body similar to those produced when you have a cold or a flu. This is why you may feel like you have a viral illness when you really don't it's just the fatigue. Treating inflammation with medications can help to reduce the excessive fatigue, but keep in mind that prescription drugs that contain opioids or coding may increase tiredness. Aim for sound sleep. In some cases, fatigue isn't exactly related to the inflammation. You know, the pain and discomfort can make it difficult to fall asleep at night, adding fuel to the exhaustion. Your pain may also cause you to wake up during the night. Here are a few ways you can ensure more a restful night's sleep: 

·      Try to go to bed at the same time every night. 

·      Take breaks throughout the day, instead of naps. 

·      Do relaxing pre-bed activities such as deep breathing exercises, meditate, I've found that I like to do some stretching, if I can, anything to try and get the blood flow moving a little bit before I lay down for the night.

·      Some people like to take a warm bath before bed. 

·      You could try adding curtains to your bedroom so that the sunlight is less likely to awake you. 

·      And then you could also try to regulate the temperature in your bedroom. That's a big one from my bedroom just it never heats up in the winter and it never gets cold in the summer. So it's always a bit of a challenge there. I tend to wake up sweating and all covered, you know, a mess because I just can't regulate the temperature in that room. 

·      Also, check for anemia. You know, inflammation from the as increases your risk for anemia. 

I'm always borderline anemic, so I have to make sure to take a lot of vitamins. My multivitamin every day and the anemia is a condition that is marked by a lack of healthy red blood cells, we know that these cells are responsible for transporting oxygen to the organs. Fatigue is one of the first signs of anemia. Other symptoms of anemia include frequent headaches, dizziness, shortness of breath, and finally pale skin. Anemia is diagnosed with a blood test. If you're diagnosed with anemia, your doctor may prescribe an iron supplement to help restore your red blood cell levels. Your doctor will also want to make sure you don't have ulcers or bleeding from non steroidal anti inflammatory drug use. 

Get on the scale. A lack of energy can lead to decreased activity and trigger weight gain. You know in this last month, I'm down about six pounds, but I still have 50 to go and I'm hoping that if I can lose some of this additional weight, even other 20 pounds, that that'll help with this sleep apnea and make that issue start to rectify itself and help to fight off some of the sleep apnea induced fatigue but being overweight presents many long term health concerns and can also make your AS symptoms worse. Extra fat adds more stress to your spine and worsens inflammation. Being overweight can also make everyday tasks more difficult to complete. So if you're still gaining weight despite eating right and exercising, you don't talk to your doctor, there could be something else going on there. You may also need further testing, like thyroid function tests to get to the root cause if you're just not able to lose any weight. Also, our medications can be notorious for either adding weight or keeping weight on I take a lot of gabapentin on a daily basis around 2400 milligrams and that I know can really add to the weight gain along with some other items. Dietary considerations weight gain often calls for changes to your diet. But when it comes to battling AS related fatigue, dietary changes mean much more than just cutting calories. Our focus as somebody with ankylosing spondylitis should be on eating nutrient dense foods, you know that will help you have a high energy all day. That's why I did if you look back at my first episode, I’ll have a link in the show notes. I did an episode with Vinnie Tortarich on the No Sugar, No Grains Diet, which is just getting rid of a lot of the bad stuff that we eat any given day and focusing on the right foods that will help us throughout the whole day. A big thing is if you drink a lot of soda. Try to swap that out with just water, you can pick up these different flavorings at the grocery store to add to your water so you can make it taste like whatever you want. Some of them have caffeine in it. So if you want to continue to add that boost from caffeine, they're all available so that's a great option instead of drinking sodas. Also consider if you're a coffee drinker, if you're putting all those you know creams and sugar and everything into that coffee, you're just adding extra calories that may be better used other spots and look at maybe drinking just a black coffee. I do know that Vinnie Tortarich talks about in the morning, adding a pad of butter and some MCT oil to the coffee to give you a nice sustained energy throughout the morning and into the afternoon. 

And finally, Some exercise tips. When you're on your last thread, you know, working out is likely the furthest thing from your mind, you're completely fatigued and just thinking about getting that energy up to do something is very difficult. You have low energy levels, and you just don't want to do it. But if you do, that little bit of exercise you can start off doing and increasing as you go along can help with future energy levels, and flexibility over time. Exercise is important for keeping your bones strong so that we don't get osteoporosis,  a disease AS patients are at an increased risk of developing later in life. So start with a short walk if possible, work your way up to longer higher intensity exercises. If you can swim swimming is a great exercise for people with AS. Also, you may find it easier to fall asleep at night if you've worked out that day. Just make sure you're not exercising too late in the evening, as it can actually disrupt your sleep. One of the things I do, or try to get done is, if I'm watching TV, when the commercials Come on during the day, do 10 quick push ups, and then get back up on the couch, watch my TV and next commercials, push ups, and so forth. So there's little ways to work that in. I also have a link in the show notes to some videos on beginner yoga. It doesn't matter what your mobility level is, if utilized, for example, the yoga for seniors, it starts off a lot of them in sitting positions that are very simple and allow you to at least start the exercise. So basically, the outlook for this is because there's no cure for AS. You know, we always are fighting these related symptoms, and you've got to really be diligent about that. If you frequently don't have enough energy to make it through the day, it may be time to reanalyze your current treatment plan with your doctor. You know, let him or her know what you're doing and they may have have additional options that you had thought of a different approach to treating as may be enough to keep fatigue at bay, above all else, you not try to remain positive and calm, you know, stress only as to the feelings of tiredness. So cut yourself some slack, try to get some more rest. Consider meditation and that yoga on top of food considerations. And, you know, we may be able as a collective group to fight this. 

So, thank you for listening. Check out the show notes again for links to spondee podcast calm to sign up for the newsletter. Also, don't hesitate to check out the Instagram page. If you're on Instagram, go to as_podcast and like the page and follow. So again, I hope you all have a wonderful week. I can't wait to interact with everybody and hear from you online. And your feedback means the world to me. So thank you for listening and have a wonderful week.

5 items to combat fatigue - https://www.healthline.com/health/ankylosing-spondylitis-fatigue#exercise

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Vinnie Tortorich episode - https://player.captivate.fm/episode/5e75cd34-5c1a-483b-a2b1-c36c60554850

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With ankylosing spondylitis, we're all just trying to alleviate as much of the pain that is associated with ankylosing spondylitis as we can. And at its basic core, you'd think that chiropractic care would make a lot of sense since it revolves around the spine, the musculoskeletal system. And you'd think, wow, that really could be a good addition to my overall care. But you have to kind of look at it in the context of how much you're fused with Ankylosing Spondylitis. Back in 2015, the American College of Rheumatology recommended against the use of any type of spinal manipulation, which is one of their tenants of how they deal with you and how they treat you. But a study done in 2016 of patients that had seen chiropractors and then were later diagnosed with ankylosing spondylitis is that it was found that that chiropractic care actually pushed them to go see, to look further into their back pain. 3300 plus people with ankylosing spondylitis were looked at, and it was found that about 7% of those people were ultimately diagnosed by a rheumatologist and they had first been seen by a chiropractor. That was me, by the time I was diagnosed in 1984. I had been seeing a chiropractor for several years before that, and it was him that finally pushed me to go see a rhuematologist, and that was where the ultimate diagnosis of Ankylosing Spondylitis came in. So, is that a bad thing that they started off there? Maybe not. It's really going to boil down to how early in the diagnosis they were. 

The Spondylitis Association of America specifically advises against back and neck manipulation by a chiropractor. They think that it could lead to additional injury of the spine when you have spinal fusion, and that's a very solid concern. “Chiropractic therapy is often useful for low back pain, but I would not suggest it for a person with ankylosing spondylitis” says Dr. Allen Fox, a rheumatologist and Professor of Internal Medicine and Chief of the Division of Rheumatology at the University of Michigan in Ann Arbor. And as a side note, I did a whole interview with Dr. Fox, Episode Number 42. Back in March of this year, and I'll have a link to that episode in the show notes The Spondylitis Association of America also goes on to say the traditional hands on manipulations used in chiropractic care involve moving the joints around in order to achieve therapeutic goals, such as easing pain, and correcting alignment problems. However, people with ankylosing spondylitis may have joint damage that can become worse or result in a fracture with such forceful pressure for a person with ankylosing spondylitis. “The spine may have become fused in this makes it more susceptible to injury”, Dr. Fox says that's why people with ankylosing spondylitis who are interested in chiropractic care should find a chiropractor who has experienced specifically with ankylosing spondylitis, and using the gentler techniques. 

So what is chiropractic care? Well, chiropractic care typically involves as we've said manual therapy. It is including anything from stretching and sustained pressure to spinal manipulation. Chiropractors are trained to treat a variety of conditions but their focus is on improving joint motion and function of the musculoskeletal system. They often focus on back pain, neck pain, and pain in your arms or legs. The manual adjustments that chiropractors are most known for are usually paired with other treatments. This includes soft tissue therapies, lifestyle recommendations, fitness, coaching, and...]]>Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. This week I wanted to talk about chiropractic care. You know, that's probably one of the few topics that when brought up online will really can develop into some heated conversations about should you or should you not? And so I thought I'd take a little bit of a look at this discusson further, you know, issues around chiropractic care. 

With ankylosing spondylitis, we're all just trying to alleviate as much of the pain that is associated with ankylosing spondylitis as we can. And at its basic core, you'd think that chiropractic care would make a lot of sense since it revolves around the spine, the musculoskeletal system. And you'd think, wow, that really could be a good addition to my overall care. But you have to kind of look at it in the context of how much you're fused with Ankylosing Spondylitis. Back in 2015, the American College of Rheumatology recommended against the use of any type of spinal manipulation, which is one of their tenants of how they deal with you and how they treat you. But a study done in 2016 of patients that had seen chiropractors and then were later diagnosed with ankylosing spondylitis is that it was found that that chiropractic care actually pushed them to go see, to look further into their back pain. 3300 plus people with ankylosing spondylitis were looked at, and it was found that about 7% of those people were ultimately diagnosed by a rheumatologist and they had first been seen by a chiropractor. That was me, by the time I was diagnosed in 1984. I had been seeing a chiropractor for several years before that, and it was him that finally pushed me to go see a rhuematologist, and that was where the ultimate diagnosis of Ankylosing Spondylitis came in. So, is that a bad thing that they started off there? Maybe not. It's really going to boil down to how early in the diagnosis they were. 

The Spondylitis Association of America specifically advises against back and neck manipulation by a chiropractor. They think that it could lead to additional injury of the spine when you have spinal fusion, and that's a very solid concern. “Chiropractic therapy is often useful for low back pain, but I would not suggest it for a person with ankylosing spondylitis” says Dr. Allen Fox, a rheumatologist and Professor of Internal Medicine and Chief of the Division of Rheumatology at the University of Michigan in Ann Arbor. And as a side note, I did a whole interview with Dr. Fox, Episode Number 42. Back in March of this year, and I'll have a link to that episode in the show notes The Spondylitis Association of America also goes on to say the traditional hands on manipulations used in chiropractic care involve moving the joints around in order to achieve therapeutic goals, such as easing pain, and correcting alignment problems. However, people with ankylosing spondylitis may have joint damage that can become worse or result in a fracture with such forceful pressure for a person with ankylosing spondylitis. “The spine may have become fused in this makes it more susceptible to injury”, Dr. Fox says that's why people with ankylosing spondylitis who are interested in chiropractic care should find a chiropractor who has experienced specifically with ankylosing spondylitis, and using the gentler techniques. 

So what is chiropractic care? Well, chiropractic care typically involves as we've said manual therapy. It is including anything from stretching and sustained pressure to spinal manipulation. Chiropractors are trained to treat a variety of conditions but their focus is on improving joint motion and function of the musculoskeletal system. They often focus on back pain, neck pain, and pain in your arms or legs. The manual adjustments that chiropractors are most known for are usually paired with other treatments. This includes soft tissue therapies, lifestyle recommendations, fitness, coaching, and nutritional advice. The goal of spinal manipulation is to restore joint mobility and reduce inflammation and pain. And chiropractors do this by manually applying a controlled force to joints that don't move well. When performed by a trained and licensed chiropractor, spinal manipulation is generally safe, but as I said, you know some people especially those with AS should proceed with caution. Chiropractic care, and AS as we've said. “AS is an inflammatory disease and it's triggered by genetic susceptibility and environmental factors that are successfully treated with medications to target its inflammatory pathways”, explains Dr. Ronan Murmur a rheumatologist at Claremont Medical “Relying on a chiropractor for treatment of AS may not be sufficient” he adds. “The good news is that there are other treatments available for AS like anti inflammatory medications and biologics”, says Dr. Alan Conrad chiropractor in Montgomery County Chiropractic Center. He says simultaneously care plans with a rheumatologist who specializes in AS can be effective for managing pain. “The combination of low force chiropractic care, ergonomic changes, and concurrent treatment with the rheumatologist is an effective treatment plan for most cases of AS”, Conrad Conrad says, ergonomic changes, such as adjusting your chair or desk at work or at home can improve posture. This may help improve muscle spasms and tension associated with as this brings up a good point. Chiropractors can do a lot more than just spinal manipulation. If the chiropractor is applying therapy with massage, heat applications or a 10s unit. This could prove to be very beneficial, explains Dr. McHale, a pain management specialist and medical director at the spine Health Center at Memorial Carol Orange Coast Medical Center. 

But there are some risks and drawbacks of chiropractic care, as often causes fusion of the vertebrae in your spine, Dr. Conrad explains that those areas shouldn't be adjusted, as they're no longer movable joints. This is due to increased calcium deposits associated with AS. Conrad also believes that people with advanced stages of AS aren't candidates for chiropractic adjustments. If you go out to the Instagram associated with this podcast, and I'll have links in the show notes. I recently posted some pictures of my spine and it shows a very classic bamboo spine, a spine that would no longer be a good candidate for any type of chiropractic care, adjustments, or manipulation. So if you get x rays and yours look like the ones that I posted of mind, you really want to reconsider using chiropractic care or make sure that the chiropractor that you're seeing is very well versed in the treatment of Ankylosing Spondylitis, inflammatory back pain, the type associated with AS requires medical treatment. That's why Dr. Marmor says that his physical therapy and stretching play an important role in the treatment of AS. He tells AS patients to avoid chiropractic care with adjustments, particularly in advanced cases of AS but according to Conrad, chiropractic care can help keep the areas above and below fusions mobile with low force techniques. One example is activator methods, a chiropractic technique that puts very little force or rotation on the affected areas. 

With all that said, the goals of any ankylosing spondylitis treatment are to reduce pain, improve your quality of life, and delay spinal damage. If you're interested in how chiropractic care can help you achieve those goals. Your first step, you really want to talk with your rheumatologist. Together, the two of you can decide if a visit to a chiropractor and a complimentary review is a good stepping stone for you to move on. Your rheumatologist may even know some chiropractors that are very well versed in your area in dealing with ankylosing spondylitis, and be able to point you in the direction of one or two for you to go and talk to and they can also help you determine which type of stretches if you go to the chiropractor appropriate and then you know, they can also review any type of radiological studies that you've had done. So a chiropractor if you're in the early stages could be a very good person to add in to your treatment team along with the rheumatologist as well as an ophthalmologist. So just the takeaway for this is, you know, make sure that you're talking to all your doctors so that they all know what you're doing. Make sure that if you decide to go see a chiropractic doctor that you're letting your rheumatologist know that so that he or she can assist you with making sure that all of your limitations are available to be provided to that chiropractor before you even walk in the front door. And then you as the patient are getting the best treatment from everybody that you can, you know, whether it be 10s unit, or any of that other stuff that was discussed, you are able to best employ that so that you get the most benefit. So anyway, thank you again for listening. I hope you all will head over to spondypodcast.com sign up for the when I feel like sending it out newsletter. And again, thank you and everybody have a wonderful week.

Healthline – Can Chiropractic Care Help Ankylosing Spondylitis Symptoms - https://www.healthline.com/health/ankylosing-spondylitis/ankylosing-spondylitis-and-chiropractic-care#when-to-see-a-chiropractor

Everyday Health – Should You See a Chiropractor for Ankylosing Spondylitis? - https://www.healthline.com/health/ankylosing-spondylitis/ankylosing-spondylitis-and-chiropractic-care#when-to-see-a-chiropractor

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 I've had AS for 22 years, everything you describe is true. And I cry when I listen. I cry because I'm so sad for myself and because I'm not alone. Thank you from the bottom of my heart. Love Lisa, the cat lady from Dublin, Ireland.

Well Lisa, I'm glad you like the show. I'm glad you find some benefit to it. Also Lisa and many others have done on spondee podcast comm you can sign up for the newsletter that I occasionally when I feel like it when I get around to it create. So I'd encourage you to go there to spondypodcast.com sign up for the newsletter and join Lisa and all the others receiving information when I get around to sending it out. This last one I sent out had pictures of Bandit in it, my service dog and training so you never know what I'm going to include in there. 

Now on to today's show, I see a lot of questions asked online every day about Ankylosing Spondylitis and these questions ranged from real basic, I've just been diagnosed, what do I expect? What should I expect? Should I take medication? Can I cure it? To very detailed questions specifically in relation to is this part of Ankylosing Spondylitis or not? So I put together these nine questions and some answers to them that hopefully this will help you as you start off your journey with Ankylosing Spondylitis. 

Number one is Ankylosing Spondylitis an autoimmune disease? Ankylosing Spondylitis is both an autoimmune type of arthritis and a chronic inflammatory disease. An autoimmune disease develops when your body attacks its own healthy tissues. Ankylosing Spondylitis is also an inflammatory condition that involves inflamed or swollen joints. It often affects joints and bones in the spine, lower back spinal bones confused together over time, and this is what is known as bamboo spine and, and how the name developed. 

Number two, what exactly is Ankylosing Spondylitis? Ankylosing Spondylitis is a type of inflammatory arthritis that affects the spine and the sacroiliac joints in the pelvis. Like many types of arthritis, Ankylosing Spondylitis can cause pain and swelling in the joints. This condition affects the bones of the spine, the vertebrae, and joints in the lower back. It also causes swelling were the tendons and ligaments attached to the bones in your spine. Your doctor might call this and Enthisitis pain and discomfort from Ankylosing Spondylitis can lead to symptoms in other joints such as shoulders, hips, you know, basically, if there's bones that come together, or there's muscles or ligaments AS can affect those areas. 

Number three, how is Ankylosing Spondylitis diagnosed? The doctor will likely start by asking about your symptoms and family history of AS. An exam can reveal symptoms like pain, tenderness and stiffness of your spine. The doctor then might send you for an X ray or MRI, or maybe even both, though generally not on the same day. Both tests can show damage to bones and soft tissues in your spine. An MRI creates more detailed images, and it can show damage earlier in the disease than an X ray can. Another way to diagnose this condition is with a blood test for the HLA-B27 gene. Now, some people don't have this gene, but have...]]>Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. How is everyone doing? I hope everyone is having just a fantastic week. So if you're on my website spondypodcast.com, you'll notice a link on the main page called Buy Me A Coffee. And that's a link that I used for anybody that wants to provide, you know, a donation to help keep the show going. And I have a fantastic message that I got last night through that link. Lisa, who is from Ireland sent a donation, which is fantastic and much appreciated and on it she wrote,

 I've had AS for 22 years, everything you describe is true. And I cry when I listen. I cry because I'm so sad for myself and because I'm not alone. Thank you from the bottom of my heart. Love Lisa, the cat lady from Dublin, Ireland.

Well Lisa, I'm glad you like the show. I'm glad you find some benefit to it. Also Lisa and many others have done on spondee podcast comm you can sign up for the newsletter that I occasionally when I feel like it when I get around to it create. So I'd encourage you to go there to spondypodcast.com sign up for the newsletter and join Lisa and all the others receiving information when I get around to sending it out. This last one I sent out had pictures of Bandit in it, my service dog and training so you never know what I'm going to include in there. 

Now on to today's show, I see a lot of questions asked online every day about Ankylosing Spondylitis and these questions ranged from real basic, I've just been diagnosed, what do I expect? What should I expect? Should I take medication? Can I cure it? To very detailed questions specifically in relation to is this part of Ankylosing Spondylitis or not? So I put together these nine questions and some answers to them that hopefully this will help you as you start off your journey with Ankylosing Spondylitis. 

Number one is Ankylosing Spondylitis an autoimmune disease? Ankylosing Spondylitis is both an autoimmune type of arthritis and a chronic inflammatory disease. An autoimmune disease develops when your body attacks its own healthy tissues. Ankylosing Spondylitis is also an inflammatory condition that involves inflamed or swollen joints. It often affects joints and bones in the spine, lower back spinal bones confused together over time, and this is what is known as bamboo spine and, and how the name developed. 

Number two, what exactly is Ankylosing Spondylitis? Ankylosing Spondylitis is a type of inflammatory arthritis that affects the spine and the sacroiliac joints in the pelvis. Like many types of arthritis, Ankylosing Spondylitis can cause pain and swelling in the joints. This condition affects the bones of the spine, the vertebrae, and joints in the lower back. It also causes swelling were the tendons and ligaments attached to the bones in your spine. Your doctor might call this and Enthisitis pain and discomfort from Ankylosing Spondylitis can lead to symptoms in other joints such as shoulders, hips, you know, basically, if there's bones that come together, or there's muscles or ligaments AS can affect those areas. 

Number three, how is Ankylosing Spondylitis diagnosed? The doctor will likely start by asking about your symptoms and family history of AS. An exam can reveal symptoms like pain, tenderness and stiffness of your spine. The doctor then might send you for an X ray or MRI, or maybe even both, though generally not on the same day. Both tests can show damage to bones and soft tissues in your spine. An MRI creates more detailed images, and it can show damage earlier in the disease than an X ray can. Another way to diagnose this condition is with a blood test for the HLA-B27 gene. Now, some people don't have this gene, but have Ankylosing Spondylitis and not everybody that's positive with the HLA-B27 gene will have Ankylosing Spondylitis. So it's just one of the things they look at. You know, the prevalence of the HLA-B27 varies in different ethnic populations. The genotype is seen in approximately 80% of the Caucasian patients with AS but less than 60% in the African American population. As I said, it is possible to have this gene and not have Ankylosing Spondylitis 

Number four; do I need to see a specialist? Your primary doctor might first suspect Ankylosing Spondylitis or may actually diagnose you after this point. They may refer you to a rheumatologist. This type of Dr specializes in diseases of the joints, bones and muscles. The rheumatologist might be your go to doctor for treatment. You might also need to be seen by physical therapist or an ophthalmologist if you have eye symptoms, and don't forget, you may also need to be eventually be seen by a orthopedic surgeon as well. So, it's good if you're diagnosed with Ankylosing Spondylitis, to make sure you have an ophthalmologist that you're comfortable with. And then your general practitioner, as well as the rheumatologist should form the nucleus of your team for dealing with Ankylosing Spondylitis. 

Number five, how will my doctor treat Ankylosing Spondylitis? Ankylosing Spondylitis treatment involves medications anciliary care from physical therapy or occupational therapy and lifestyle changes. Surgery is also a possibility if your joints are very damaged. That was my case, I had both my hips replaced by age 23 and It has led to most of my AS problems have been tied in one form or fashion to the damage that was done to my hips from first Ankylosing Spondylitis and then the issues with the hip replacement of the left hip. Those have created the bulk of my problems. Your rheumatologist may recommend one or more of the following Ankylosing Spondylitis treatments. Non-steroidal anti-inflammatory drugs, such as ibuprofen to decrease pain and inflammation. A biologic, such as a TNF inhibitor, which are given by an injection or an IV infusion, physical therapy to teach you exercises that strengthen and stretch the affected joints in your back, and then possibly Disease Modifying AntiRheumatic drugs to treat pain and inflammation in the joints. Diet hasn't been well studied for Ankylosing Spondylitis, but it is found that people react different to changes in food, some people may need to remove things like night shades, others might need to remove dairy, grains and some people remove all of that. And last, avoid smoking, which drives inflammation. It can worsen joint damage from Ankylosing Spondylitis. 

Number six; what surgeries are there for Ankylosing Spondylitis? Surgery is a last resort option for people with severe joint damage. A joint replacement removes a damaged joint and replaces it with one made from metal, plastic or ceramics. Spinal surgery is indicated when patients are severely impaired and unable to perform daily activities. There are several procedures that are used on the symptoms and imaging findings and osteotomy involves a procedure to straighten your spine and correct your posture. A laminectomy can be performed if there is pressure on nerve roots 

Number seven will I need physical therapy? Physical Therapy is a recommended treatment for Ankylosing Spondylitis. It teaches you exercises to increase movement and flexibility and decrease pain. Physical Therapist can also show you posture exercises to improve your flexibility and range of motion. I recently fell on my right hip and jarred my back. And so I'm going to be going to physical therapy. It's been years since I've gone to physical therapy, but my orthopedic surgeon thought it might be a good idea to attend some sessions. 

Number eight, what complications might arise? Ankylosing Spondylitis can cause complications like fusion of the spinal bones and a forward curvature of the spine, which is what I have weakening of the bones, which is osteoporosis, and fractures. Eye inflammation called uveitis. And probably the aorta, the largest artery in your body's secondary to inflammation. 

Nine, what to do if my symptoms get worse? Well, your symptoms that get worse can mean that your treatment isn't working as well as it should and that your Ankylosing Spondylitis is progressing. For example, your spine might feel stiffer or more painful than usual. Or you might begin to experience symptoms and other joints. Excess tenderness is another sign of increased inflammation. If you're experiencing any new or worsening symptoms, you know, you want to call your doctor right away. Don't put it off. Don't think, oh, it'll get better. It's better to be seen and looked at the knot and let this continue to progress in you. They might recommend a change to your treatment plan to relieve your discomfort and prevent your condition from getting worse. And lastly, is there a cure? Well, there's no cure for ankylosing spondylitis, and anyone that pedals one is, is peddling snake oil. There aren't cures for most other forms of arthritis either. But you can put as in remission that can be done from eating. You know, diet changes can be done from medications, exercise, all of those can help your body to put the disease into a remission, which can slow you know the rate of joint damage, which is what we all want. So if that's the basis so if you're able to achieve that that's fantastic but know that it's always underlying out there and waiting to rear its its head up to come back. 

So I hope everybody has again, a wonderful, wonderful week, please go to spondee podcast comm to sign up for the newsletter and don't hesitate to reach out to me with any questions. Thanks and have a great week.

This episode was based upon this article - https://www.healthline.com/health/ankylosing-spondylitis/questions-about-ankylosing-spondylitis

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Well, in today's episode, I wanted to delve into a subject that I think might be of interest to a lot of people when they look at the boards on Facebook quite a bit. I see people that say, I know I have Ankylosing Spondylitis. I know I've got it. But my rheumatologist won't give me a diagnosis. I have all the pain. I have all the, you know the symptoms, but he or she just won't tell me I have Ankylosing Spondylitis. Why is that? It's frustrating. It's delaying stuff. Well, I'm going to switch it around a little bit. Say that not in all cases, but maybe your rheumatologist is not wrong. Maybe you don't have Ankylosing Spondylitis. But maybe you're dealing with non-radiographic axial spondyloarthritis. Wow, say that multiple times real fast. 

What is it and how is it treated? And that's what I want to cover today because you know, it might be that for some when you go at your doctor saying I have Ankylosing Spondylitis, I have Ankylosing Spondylitis, why won't you diagnose me? They're thinking and only trying to look at maybe not correctly, but they might only be looking at the Ankylosing Spondylitis as the possible outcome. And when the pieces don't fit, even though most of the pieces of the puzzle are there, there are maybe a couple of very key pieces that are missing. You walk away frustrated because you think that I've got this ankylosing spondylitis and the doctors just not listening to me and not validating what I feel. Well, that's where this term that I've covered in several episodes recently, axial spondyloarthritis comes in. That's that umbrella term that covers nonradiographic axial spondyloarthritis and ankylosing spondylitis. What's the benefit of me knowing about the difference and let's deal with that because I think it's really important when you think of inflammatory arthritis like rheumatoid arthritis you often think of it as affecting small joints, the hands and the feet. Those are usually the first I think of when I think of rheumatoid arthritis nonradiographic axial spondyloarthritis is a different kind of inflammatory arthritis. It falls under an umbrella category that I just mentioned the axial spondyloarthritis. Well, nonradiographic is a type of inflammatory arthritis that causes lower back pain among other symptoms. There's your exact same symptom that you might encounter with ankylosing spondylitis, that lower back pain, that hip pain, the sacroiliac joint pain, you know, all that can fall into both of these nonradiographic, there are symptoms but no visible damage on the X rays. That's the big key takeaway right there is your rheumatologist could be looking at your x rays and saying I don't see any damage, you know, maybe you have fibro or, and they go off on a tangent because they're not thinking nonradiographic. And that's where you, as the patient have to kind of work backwards with the doctor and maybe walk them and say, well, if you're saying I don't have Ankylosing Spondylitis is nonradiographic a possibility. So that's one thing you can start off with, you know, MRIs can help diagnose nonradiographic axial spondyloarthritis, but sometimes they too can be negative, and that can really, really throw a diagnosis off. And that's what can make this so challenging and so long unfortunately for some people to get a diagnose. The good news is though there are treatments that are transitioning from the Ankylosing...]]>Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. How's everybody doing here in the Northern Hemisphere, I'm in North America and we're having summer, the heats going and man, it feels really, really nice. I know for you in the southern hemisphere, the winter is kicked in. So in areas like Australia and so forth, you're getting a cooler temperature. So I hope that's nice. I hope you guys had a great summer. And overall, you know, I hope it helps with all of the arthritis and all the issues that everybody's dealing with. 

Well, in today's episode, I wanted to delve into a subject that I think might be of interest to a lot of people when they look at the boards on Facebook quite a bit. I see people that say, I know I have Ankylosing Spondylitis. I know I've got it. But my rheumatologist won't give me a diagnosis. I have all the pain. I have all the, you know the symptoms, but he or she just won't tell me I have Ankylosing Spondylitis. Why is that? It's frustrating. It's delaying stuff. Well, I'm going to switch it around a little bit. Say that not in all cases, but maybe your rheumatologist is not wrong. Maybe you don't have Ankylosing Spondylitis. But maybe you're dealing with non-radiographic axial spondyloarthritis. Wow, say that multiple times real fast. 

What is it and how is it treated? And that's what I want to cover today because you know, it might be that for some when you go at your doctor saying I have Ankylosing Spondylitis, I have Ankylosing Spondylitis, why won't you diagnose me? They're thinking and only trying to look at maybe not correctly, but they might only be looking at the Ankylosing Spondylitis as the possible outcome. And when the pieces don't fit, even though most of the pieces of the puzzle are there, there are maybe a couple of very key pieces that are missing. You walk away frustrated because you think that I've got this ankylosing spondylitis and the doctors just not listening to me and not validating what I feel. Well, that's where this term that I've covered in several episodes recently, axial spondyloarthritis comes in. That's that umbrella term that covers nonradiographic axial spondyloarthritis and ankylosing spondylitis. What's the benefit of me knowing about the difference and let's deal with that because I think it's really important when you think of inflammatory arthritis like rheumatoid arthritis you often think of it as affecting small joints, the hands and the feet. Those are usually the first I think of when I think of rheumatoid arthritis nonradiographic axial spondyloarthritis is a different kind of inflammatory arthritis. It falls under an umbrella category that I just mentioned the axial spondyloarthritis. Well, nonradiographic is a type of inflammatory arthritis that causes lower back pain among other symptoms. There's your exact same symptom that you might encounter with ankylosing spondylitis, that lower back pain, that hip pain, the sacroiliac joint pain, you know, all that can fall into both of these nonradiographic, there are symptoms but no visible damage on the X rays. That's the big key takeaway right there is your rheumatologist could be looking at your x rays and saying I don't see any damage, you know, maybe you have fibro or, and they go off on a tangent because they're not thinking nonradiographic. And that's where you, as the patient have to kind of work backwards with the doctor and maybe walk them and say, well, if you're saying I don't have Ankylosing Spondylitis is nonradiographic a possibility. So that's one thing you can start off with, you know, MRIs can help diagnose nonradiographic axial spondyloarthritis, but sometimes they too can be negative, and that can really, really throw a diagnosis off. And that's what can make this so challenging and so long unfortunately for some people to get a diagnose. The good news is though there are treatments that are transitioning from the Ankylosing Spondylitis side of the house over the nonradiographic and they're being approved to help on the biologic side. When we think of the rheumatoid arthritis. We think of it affecting hands, feet, things of that nature with nonradiographic axial spondylitis. It falls under an umbrella category of diseases called spondylosis, which includes different types of arthritis with one distinguishing feature. There's almost always inflammation in the spine. Back Pain is the hallmark of the nonradiographic axial spondyloarthritis, which sets it apart from any other type of inflammatory arthritis, says Dr. Malik, who's a rheumatologist at New York University langerhans psoriatic arthritis center nonradiographic means the disease causes symptoms, but there's no visible damage on x rays the way there is with related type of inflammatory arthritis called ankylosing spondylitis. 

Axial refers to the joints that the disease primarily affects the spine, the chest and the hip bone. Spondyloarthritis is a family of inflammatory arthritis that affects the joints and entethies which are tissues between the bones, the ligaments and the tendons. What are some of the symptoms of nonradiographic axial spondyloarthritis to differentiate nonradiographic from any other kinds of back pain? There are a few telltale signs based on when the pain occurs, how long it lasts, and the age that it first strikes and what makes it feel better timing of the pain, back pain and nonradiographic axial spondyloarthritis can wake you up in the middle of the night and hurt in the morning you may feel morning stiffness that makes it hard to get out of bed and get moving. Rest verse exercise, mechanical back pain such as from a strain or a slip disc tends to feel better when you're resting or not exerting yourself inflammatory back pain from nonradiographic axial spondyloarthritis, on the other hand, often feels better when you move around, you know that move it or lose it exercise are stretched, all of that is good. The other thing is age of onset, nonradiographic axial spondyloarthritis symptoms often first strike in late adolescence or early adulthood, often before the age of 40. Entitihisitus is inflammation of the enthitisis where bone attaches to a tendon or ligament is another factor that sets spondyloarthritis like non radiographic Apart from other types of arthritis as the disease progresses, from nonradiographic to later ankylosing spondylitis stages, and to the situs can cause the spinal bones to fuse together and make patients lose mobility because the pain comes from inflammation from the immune problems rather than mechanical wear and tear the joints other body parts can hurt too, especially the knees and the heels. Inflammation from nonradiographic axial spondylitis can also cause other symptoms that go beyond the joints, psoriatic arthritis and enterapathak, which is inflammatory bowel disease related arthritis fall under the spondyloarthritis umbrella and tend to overlap with non radiographic and I see many of you posted I have this I have that that ties back into the nonradiographic. If you're not seeing the damage on MRIs or X rays, and then you're telling your doctor I know I have AS the doctor saying, No you don't. It's a communication gap. We need to get on the same page and use the right terminology to help guide our Doctors to where we think we're at. So about 15% of nonradiographic patients experience uveitis, which is another big one, which is eye inflammation that can cause redness, pain and blurred vision. And I've done several episodes about that that will be linked in the show notes. Other patients might experience they're called sausage digits, you know, where the fingers or toes swell up from inflammation. 

So what are some causes of nonradiographic axial spondylitis? Well, obviously, many people have never heard of the phrase nonradiographic axial spondylitis. So it's not surprising that people often chalk up you know, the back pain and the other symptoms to other types of health issues, sprain too much, you know, whatever they whatever they decide, usually mechanical causes, strain sprains, you know, slipped discs, but axial spondyloarthritis tends to take a long time to be diagnosed. That's because the X rays, the MRIs, that can all show negative so you're still having the pain, you're still having the symptoms. But you're not able to get diagnosed and that's why see some of these long diagnosis times I believe, excess bundles artist tends to take a long time to be diagnosed an average of seven years between first symptoms and diagnosis, according to research presented in 2018, and it can take years for inflammation to do visible damage, which makes it hard for doctors to pinpoint the cause rather than being due to mechanical problems and your back non radiographic often occurs because of chronic inflammation. The non radiographic is a cross between like an auto inflammatory and autoimmune condition immune system gets confused, thinks the body is being attacked as the body produces inflammation to protect against the non existent attacker. healthy tissue is damaged in the process. doctors aren't sure exactly, you know what causes the immune system to act this way. With non radiographic though there seems to be a genetic component. For example, the gene variant HLA dash b 27 is common in people with spinal arthritis. You know, research is It develops may turn up other genes, but you know, there's that common thread. Now, that doesn't mean that if you're negative on HLA b 27, and you're negative on your x rays, and you're negative on an MRI, that you don't have non radiographic, so sponder arthritis just means more digging has to be done more looking at the overall lifestyle of what you're encountering. And that's why I say it's very, very important. If you think you have something wrong, start a journal going into the doctor and tell them how you feel that day or how you felt in the last week or two doesn't say a whole lot. Start a journal figure out week after a week, what you're doing what you're dealing with, check things with your diet, remove foods and see how you feel. Add things in and see how you feel and you know, just keep tweaking with it because all that information is going to help that doctor diagnose that nonradiographic axial sponder arthritis, if that's what you're dealing with. So then we get to the difference between nonradiographic axial spondyloarthritis, ankylosing spondylitis, which is what a lot of people jump to conclusions that here's what I got. They get upset when their doctor tells them no you don't have ankylosing spondylitis and they start checking off. I have this symptom I have this symptom, this symptom, the doctor you know, that that I think creates some of the confusion. So nonradiographic axial spondyloarthritis is generally thought of as an early stage of Ankylosing Spondylitis, another type of spondyloarthritis. The main difference between the two is that as involves bone damage that can be seen on x rays nonradiographic does not because the disease hasn't progressed far enough yet. Spider arthritis starts the joints before affecting the bones. But x rays can't capture the early damage, says rheumatologist Hilary Norton medical director of Santa Fe Rheumatology instead rheumatologists often use MRIs to spot swelling in the softer tissue traditionally, to be diagnosed with as one would need to have an X ray changes which could take 10 years From symptom onset to develop, says Dr. Norton, who herself has ankylosing spondylitis. The CT and the X ray show bone damage after the inflammation is caused damage, but the MRI shows active inflammation. Still, MRIs aren't perfect either. Some patients will show swelling that isn't related to axial spondyloarthritis, others have no swelling do seem to have the disease. In the latter case patients who are monitored and sometimes take another MRI a later date says Dr. Norton research shows that it could take more than a year for MRIs to show visible swelling. So doctors look at the rest of the clinical picture, including symptoms, history and genetic presence like having the HLA-B27 gene as the damage progresses, you know sponder arthritis can move along the spectrum from non radiographic to radiographic though it might never progress there at all over two to 10 years about 10% to 40% of patients with non radiographic axial sponder arthritis will develop ankylosing spondylitis According to a study that was in the expert review of clinical immunology symptoms don't change much from later stage, non radiographic to early stage ankylosing spondylitis. Those as gets worse, the backbones can fuse together and make patients lose spine mobility, says Dr. Malik. 

So how is nonradiographic diagnosed? There's no single definitive test that can clinch a nonradiographic axial spondyloarthritis diagnosis, so rheumatologists look a combination of clinical symptoms, blood testing, and imaging. And that's why I say it's important for you to do as much of the work as possible in documenting your conditions on a day by day basis for the doctor. Doctors might order blood tests that measure inflammation in the body, such as C reactive proteins, and endocrine sedimentary rates, these tests can pinpoint where in the body the inflammation is occurring, though, so rheumatologists need to take results in context of the whole clinical picture. They should also do a blood test. For the HLA-B27 gene, which is found in about 83% of people with axial spondyloarthritis, according to a study that was done, but again, this test alone can't confirm a diagnosis, because about 98% of people who carry the gene will never develop spondyloarthritis and the HLA-B27 gene is less prevalent in certain groups of people with axial spondyloarthritis, such as African Americans. In most cases, doctors will also use an MRI to help confirm a diagnosis of non radiographic because MRIs can catch inflammation of the sacroiliac joint of the pelvis before the disease progresses enough to see bone fusion and the X ray, but you can still have non radiographic even if the MRI isn't positive and doctors may start treatment. If a physician's clinical suspicion is very high given symptoms and other clinical characteristics. For example, the patient meets the assessment of sponder arthritis International Society clinical criteria simply does not have an alternative explanation for symptoms. We do offer a trial and says physical therapy etc, says Dr. Malik And finally, how is nonradiographic axial spondyloarthritis treated? Well at this point treatment for nonradiographic is focused on addressing pain rather than stopping disease progression. And that's actually I'll jump into an interesting piece. This article that I was using and reviewing for some of this information was done in late 2018. Since then, there have been three biologics that have been approved for use in nonradiographic axial spondyloarthritis, the newest one just approved last week, I think it was last week was Cosentyx, and that's now joining Cimzia and talks as the three biologics that are available to be used to treat nonradiographic spondyloarthritis with the Cosentyx and the Taltz just coming on in June of 2020. So I mean, just like now, so that gives three biologic opportunities. And that's one thing if you are talking with folks you have to remember telling them to go out and ask their doctor for Humira or Enbrel or some of these others, those may not be approved for nonradiographic. So I would encourage you to really try to focus in if you're not getting that as diagnosis because the doctor keeps saying and x rays are negative work with them to start looking at nonradiographic if the NSAIDS don't work, the American College of Rheumatology recommends using TNF inhibitors, which are a biologic drug that I mentioned earlier. And then you know, some biologics are approved for treating ankylosing spondylitis, but because of they haven't been approved yet for nonradiographic it can be tricky to get insurance companies to cover the treatment. If you are dead set on trying something that is not approved yet, but as I said, there are three that are now approved. So that's a great start. So then again, other types of arthritis under the spondyloarthritis umbrella like psoriatic arthritis and inflammatory bowel disease, arthritis can be treated with biologics. Some doctors will maybe right up the work as that's the primary thing they're trying to treat hoping that this nonradiographic response as well so that's certainly an option that's out there overall if you're not getting the diagnosis and you keep going at the doctor saying I've got as I've got is changed the thought process in your mind and start looking at non radiographic as a possibility even if you have family members with as they might have already progressed through that non radiographic to the as you may just be the beginning stages of it or you may never make it all the way to a full blown a s unfortunately, you get to deal with all the fun stuff, the pain, everything that goes along with it only under the term non radiographic.

So I hope that is helpful for folks. I really appreciate you listening to the show. This one was a little longer but a lot of good information here. I wanted to get out to everybody and you can find the links to the article I referenced in the show notes as well as shows on biologics and uveitis that discussed past episodes that I've done also linked in the show notes. And as always, again, I thank everybody for listening around the world. It's just amazing to see the downloads come in from around the world and please go out to spondypodcast.com and sign up for the newsletter. Those numbers grow. I've got a new one coming out here in another week or so. So anyway, everybody, take care. Have a wonderful day and I look forward to talking to you soon.

What is Non-Radiographic Axial Spondyloarthritis – Creaky Joints, https://creakyjoints.org/education/what-is-non-radiographic-axial-spondyloarthritis/

FDA expands approval of secukinumab for nonradiographic axial spondyloarthritis – Healio - https://www.healio.com/news/rheumatology/20200617/fda-expands-approval-of-secukinumab-for-nonradiographic-axial-spondyloarthritis

Epiosde 50 Axial Spondyloarthritis – The Basics - https://player.captivate.fm/episode/c0e786dd-fd64-4e0c-bfa4-a4f3b58d2230

Episode 048: Iritis/Uveitis - A discussion with Dr. Grace Levy-Clarke from Tampa Bay Uveitis - https://player.captivate.fm/episode/d32f771c-72e4-4225-aa3a-9f53e10fcbca

And with that I had a review come in and I wanted to touch base on this and read it because it's also going to delve into something to do with the topic today. The person wrote “Finally a diagnosis. Thank you for your podcasts. Yesterday I was diagnosed with AS. It only took them nine and a half years. I’m practically bedridden at this point is advanced so far. Can it get better?” From Gigi Goodwitch in the United States, GG, go to spondypodcast.com and reach out and let me know if it starts to get better for you. My answer to that is, you know, can it get better, maybe maybe with the having the diagnosis, you can finally get the medications that you need to help alleviate the pain, the inflammation and bring you some benefit and no longer be bedridden. So again, I really hope that you reach out through the website spondypodcast.com so that I can get an update and know how you're doing and then for anybody listening, I've seen the numbers going up again and it's fantastic. Go out to spondypodcast.com, sign up for the newsletter, and I'll be sending one out here in the next few weeks. And I've got some special items coming up, we're going to do something a little bit different with listeners from few different countries to bring you an episode that I think will be really unique. 

But on with today's show, well, when I looked at the websites, because I like to read a lot of the posts that get done on the various forums on Facebook, and one of the things that I saw discussed over and over recently, is something that I can really understand and empathize with. And that's with all of us having chronic pain, how do we deal with the burden of guilt? And I had come across an article from a website called despite Pain(despitepain.com) that I had been wanting to work into a show, and you'll find a link to the website in the show notes but the website is Chronic Pain. How can we overcome the burden of guilt? This was done back in December of 2018. Again, from the website despite pain, it was pretty interesting because I really can understand this, you know, the guilt of why me the guilt of, I can't do what I want to do. I can't run around with my friends the way I want to run around with them or my kids or my spouse. All of these things about why am I the one dealing with this? And I can tell you, that's something that I dealt with for a long time, especially pre Internet days. I was diagnosed a long time ago, 36 plus years ago, and there was no Internet, there was no way to connect with other people that had Ankylosing Spondylitis. I was just given this diagnosis. I was 14 years old, kind of put out there. You know, good luck. And it really changed a lot of the trajectory of where I had envisioned my life as a young man going and what I ended up doing, it's completely changed everything. And now, with going on disability, it's brought me to the ability to do this show and connect with so many people, but back to guilt. You know, we struggle with the pain. We all have different levels and different styles of pain. And we struggle with the stress that that pain brings about, and...]]>Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast, I wanted to take care of a couple housekeeping items. First and foremost, I got a download the other day from the 91st country to have at least one download take place. And that was a download, a single one that came out of Iraq. So to whoever did that, I hope you enjoy the show. Welcome. I hope you download a bunch more to listen to and are able to interact through the spondypodcast.com website. Let me know who you are and if there's anything I can do to try and answer any questions, I look forward to interacting with all the listeners across all 91 different countries where downloads have coming from. That just blows my mind. It's just such an amazing thing to think of that we're all connected by this one thing called Ankylosing Spondylitis. 

And with that I had a review come in and I wanted to touch base on this and read it because it's also going to delve into something to do with the topic today. The person wrote “Finally a diagnosis. Thank you for your podcasts. Yesterday I was diagnosed with AS. It only took them nine and a half years. I’m practically bedridden at this point is advanced so far. Can it get better?” From Gigi Goodwitch in the United States, GG, go to spondypodcast.com and reach out and let me know if it starts to get better for you. My answer to that is, you know, can it get better, maybe maybe with the having the diagnosis, you can finally get the medications that you need to help alleviate the pain, the inflammation and bring you some benefit and no longer be bedridden. So again, I really hope that you reach out through the website spondypodcast.com so that I can get an update and know how you're doing and then for anybody listening, I've seen the numbers going up again and it's fantastic. Go out to spondypodcast.com, sign up for the newsletter, and I'll be sending one out here in the next few weeks. And I've got some special items coming up, we're going to do something a little bit different with listeners from few different countries to bring you an episode that I think will be really unique. 

But on with today's show, well, when I looked at the websites, because I like to read a lot of the posts that get done on the various forums on Facebook, and one of the things that I saw discussed over and over recently, is something that I can really understand and empathize with. And that's with all of us having chronic pain, how do we deal with the burden of guilt? And I had come across an article from a website called despite Pain(despitepain.com) that I had been wanting to work into a show, and you'll find a link to the website in the show notes but the website is Chronic Pain. How can we overcome the burden of guilt? This was done back in December of 2018. Again, from the website despite pain, it was pretty interesting because I really can understand this, you know, the guilt of why me the guilt of, I can't do what I want to do. I can't run around with my friends the way I want to run around with them or my kids or my spouse. All of these things about why am I the one dealing with this? And I can tell you, that's something that I dealt with for a long time, especially pre Internet days. I was diagnosed a long time ago, 36 plus years ago, and there was no Internet, there was no way to connect with other people that had Ankylosing Spondylitis. I was just given this diagnosis. I was 14 years old, kind of put out there. You know, good luck. And it really changed a lot of the trajectory of where I had envisioned my life as a young man going and what I ended up doing, it's completely changed everything. And now, with going on disability, it's brought me to the ability to do this show and connect with so many people, but back to guilt. You know, we struggle with the pain. We all have different levels and different styles of pain. And we struggle with the stress that that pain brings about, and how we live with it, how we deal with it. And sometimes we struggle with all consuming guilt, which can ultimately affect both our mental and physical health, as any therapist will tell you. Guilt is a huge weight to be chained to, and we can't carry it around. Instead, it something that you drag along. Guilt doesn't help you. It's not something that you easily bear. It's a challenge for all of us. So how do we get rid of it? What do we do? How do we move forward?

Well, they say pain is like a four by four gas guzzler. It wants more than we can afford. Our tank empties quickly, we run out, we're stranded as we have no reserves, and we need to wait before we can afford to refill. Sometimes it takes days even weeks before we can refill that tank when we burden ourselves with the guilt that we carry, or the tank empties even faster because guilt uses an incredible amount of energy. Our energy is such a scarce commodity. If we could ditch that guilt, it would free up that energy, which is already in short supply. We simply don't have enough of it to cope with everyday life. Therefore we need to try to stop that wastage. That is so true, there's many times when I think about the things that I need to do for a given day, whether it be running errands, and let's say that I need to run errands to two or three different places. Well, there are times where after I run that first errand, I don't have the energy to do anymore, they might need to be done. I just can't do them. And so it has to be addressed. It has to be looked at as far as how do I best manage this finite resource, this energy that I have and if I'm carrying all this Guilt behind me dragging it along is that just wasting energy? Chances are Yes; we can't let ourselves be burdened with guilt. It's a difficult emotion to stop perhaps some of the following reasons for feeling guilty. Sound familiar? You believe you're a burden to your family; you don't have the energy or the capability to do everyday tasks and chores or look after your family. You may be unable to work, therefore unable to provide financially to the household. If you can't work, you might feel that you can't pull your weight because of the pain and lack of energy. You might also feel guilty about taking sick leave because you're letting other people down. You feel like you need to depend on other people too much, both financially and physically. You might be a student struggling with coursework, you don't visit people or keep in touch enough, or you feel that you let enough other people down when you need to cancel plans last minute, due to the unpredictable nature of your pain. You blame yourselves because you have no social life. You're always tired. You need to sleep a lot you have put on weight you're unable to exercise, you feel guilty because this is not the person you want to be. You forget things and lose track of conversations because of brain fog due to the pain or medication, or both. You might believe you're not good enough, not good enough at what you do. Not good enough at being a husband, a wife, a parent, a child, sibling, friend, you know, because that pain affects everything in your life. And then lastly, you just feel guilty for no other reason than for being you. Nobody should ever feel guilty for being who they are because they live with chronic pain. It's not their fault. You know, you didn't ask for it. So you don't deserve it. You shouldn't feel guilty. So how do I overcome this burden of guilt? Well, you really need to look at ways to rid yourself of the guilt because it's unnecessary. It's damaging to not only your health but your well being besides that you have more than enough to put up with with Ankylosing Spondylitis besides having to worry about carrying extra guilt around. So here's 12 tips that the website lists to help with trying to ditch the guilt. 

Number one, make a list. Try making a list of reasons why you feel guilty, study each reason and ask yourself, if you could do something differently. Most likely, you'll find that you are doing the best you can therefore you have no reason to feel guilty. 

Number two, ask for reassurance. You might think you are a burden. But your friends and family most likely don't explain to them how you're feeling because it's better to talk rather than keep it into yourself. If your friends or family does tell you that you are a burden, then you really need to think those relationships, you really need to see if those are people that you can remove from your life, either in the short term or permanently. 

Number three, ask for help. This one was very difficult for me. I had to finally realize that letting people help me was not a sign of weakness. So if you're struggling to look after your children, tell someone and when people offer help Take it without guilt. That's what got me. Never feel bad about getting help you live with a chronic condition, many of them don't. 

Number four, set priorities. Decide what tasks and chores are most important. Everything else can wait for a better day. And again, ask for help. Don't put yourself on a guilt trip for not cooking elaborate meals, or having a toddler's fingerprints on the windows. Those things don't matter in the long run, do what you can do. I'm on a cane. When I clean my kitchen and able bodied person it would probably take them half an hour 45 minutes. Me it takes two hours. It's a lot of energy to use. So it might not always be the most organized, you know, kitchen around but it's clean and it works. 

Number five, see your doctor, people with chronic pain can often suffer from depression and anxiety which can lead to feelings of insecurity and guilt. Perhaps medications and or counseling could help or something like Meditation. I know you're thinking all great, but no, I'm I, I'm telling you there are ways to look at doing meditation that can really be beneficial. I was a big non-believer in it until I actually started practicing it. 

Number six, learn to say no without guilt. It takes time to learn. But saying no is actually self-care. It's your pain. And you know how you'll suffer if you do something? If it's worth some extra pain, you might as well say yes and go for it. If it's not worth it, say no without guilt. 

Number seven alternatives. If you can't do something, try making alternative plans. You know, rather than go out for coffee with your friends, ask them to visit you do something that suits them. And you know, as we're dealing with this whole COVID thing, you're probably not going out anywhere or going very limited places. But you know what, if you want to meet outside and that's acceptable in your area, you want to sit on the porch and talk to somebody Go for it if it works for both people, great. 

Number eight, it's not my fault. Write these words anywhere. You'll see them throughout the day on post it notes on the fridge or make it your computer screensaver. If you keep a journal write the phrase on every page. It's not your fault. You didn't ask for Ankylosing Spondylitis? What is your controllable item? And that is how you deal with it. Do you overcome as best you can do you push forward as best you can and not let it beat you.

Number nine realistic goals. set realistic goals. Small achievements can be huge victories. If you miss a goal one day, don't worry. Because tomorrow is another day and you'll just tackle that chore the next day or let somebody help you with tackling that chore. whatever needs to be done to get it done. It can wait. 

Number 10 be proud of yourself. You live with pain every day. It's a constant struggle but you try Your best be very proud. Isn't that the truth, we all have this pain we all need to adapt. And to every day, go out and deal with it. A level of pain that many other people would have no way of functioning properly have they had a day or two of it, we deal with it day after day after day. So be proud of what you can do. Be happy with the things that you can do. not focusing on all the things that maybe you can't do. 

Number 11 love yourself. It's okay actually imperative to love yourself. Spend time on yourself. Be kind to yourself, do something you love hobby read, go to a spa. You know, I love to read. So I do spend a large amount of time reading. Could be fiction books could be stuff related to a future episode for the show. Who knows, but I like to spend a lot of time reading and that's for me. Do that for me. 

Number 12 advice you'd give to a friend. Finally, ask yourself this question. What advice would I give to a friend and my exact position? The answer will probably be ditch the guilt. Whatever you tell a friend is probably what's the best thing to do for yourself. 

So, ultimately, you know, I hope you don't live with this burden of guilt, because of the chronic pain. If you do, I hope you can work on overcoming it. If you have access to go visit with a therapist, either online or in person, and you need that help to overcome the guilt. Do it please take advantage of it. Because ultimately, you're going to become a better person for dealing with it. And you being a better person means that everybody involved in your life, gets to see a better person and interact with a better person. So again, I'd love to hear how everybody's dealing with this. Please go to spondee podcast calm and Go to the contact page. Let me know what you're doing. Let me know how you overcome dealing with guilt. I'd love to hear it, and we might be able to share those on a future episode. Take care, love yourselves, and I look forward to talking to you again next week.

https://despitepain.com/2018/12/02/chronic-pain-how-can-we-overturn-the-burden-of-guilt/

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So, on today's show, one of the things that you know, I've really thought about lately is not so much that it's affecting me but that I've seen it talked about a lot online is the pain that comes along with ankylosing spondylitis and the damage that it can do to you emotionally. So I wanted to look at pain and your emotions today and I happen to find a really neat article on that titled Pain and your Emotions on ankylosingspondylitis.net if you have not gone out to Ankylosing spondylitis.com That, I encourage you to do that. It's a fantastic website filled with a lot of really, really good articles about Ankylosing Spondylitis and all the ramifications that it does and how it affects your life by not only the editorial team, but also by a number of writers with AS. So I encourage you to head over to ankylosingspondylitis.net.

 As we all know, Ankylosing Spondylitis is a chronic type of arthritis. It's also as you've heard, in the last few episodes, we refer to it as Axial Spindyloarthritis, which is kind of a little more inclusive term. It is characterized by pain in your hips, your spine, rib cage, neck, really anywhere, it can affect you. We're all affected differently. Mine started in my hips, my si joints, progressed to the actual hip socket damage, and then worked its way up at spine for me So it's been a unique journey on my end. But I know other people have had completely different experiences. And you know, that's the great thing about the community is you can learn from others to help understand what your body is going through. So anyway, it's caused by excess inflammation in the joints. We know that people with ankylosing spondylitis can experience limitations in their ability to move because of the pain and inflammation. One thing we hear over and over is get up and move, you’ve got to get up a movement. And I agree with that, there are some with ankylosing spondylitis like myself, who after multiple hip replacements moving is not as easy I walk with a cane, and in many spots, I use crutches only because I've been having a pretty serious issues with my hips lately. So we're all different. I encourage you to do as much exercise in any given day as you can, because that movement is really going to help to keep you in the long run, feeling better. And then lastly, over time, your spine can fuse. This is what's called bamboo spine. Its kind of where the name of the disease started. And you can see somebody with it very distinctly because they'll generally be hunched over. You know, it's not hard to pick out chronic pain and Ankylosing Spondylitis. 

So, as Ankylosing Spondylitis progresses, you know, it progresses differently in everybody. Where I had a heavy attack in my sacroiliac joints and my hips when I was younger, others have it in their back, knees, ankles, wherever but one of the most common symptoms that accompanies the disease is the overall just chronic pain. Many AS patients are able to successfully manage their pain using over the counter medications and prescription pain medications. You know, the Nsaids, the heavy strength nsaids, the maloxicam, the Celebrex is whatever your body handles the best. I was on Celebrex for geez, I don't know 17-18 years, something like that worked really well for me. But I now have some kidney damage because I also took other stuff on top of it that I wasn't supposed to, to help. And well, I lost some kidney function, so that can be common for folks. Some people, however, experience...]]>Hello, welcome to this episode of The Ankylosing Spondylitis Podcast. I hope this show finds everybody doing fantastic. I want to thank those people that went over to spondypodcast.com and signed up for the newsletter, I really appreciate that it's great to see the numbers growing. And, you know, I look forward to communicating with everybody through the newsletter and hearing from you on the Contact link. 

So, on today's show, one of the things that you know, I've really thought about lately is not so much that it's affecting me but that I've seen it talked about a lot online is the pain that comes along with ankylosing spondylitis and the damage that it can do to you emotionally. So I wanted to look at pain and your emotions today and I happen to find a really neat article on that titled Pain and your Emotions on ankylosingspondylitis.net if you have not gone out to Ankylosing spondylitis.com That, I encourage you to do that. It's a fantastic website filled with a lot of really, really good articles about Ankylosing Spondylitis and all the ramifications that it does and how it affects your life by not only the editorial team, but also by a number of writers with AS. So I encourage you to head over to ankylosingspondylitis.net.

 As we all know, Ankylosing Spondylitis is a chronic type of arthritis. It's also as you've heard, in the last few episodes, we refer to it as Axial Spindyloarthritis, which is kind of a little more inclusive term. It is characterized by pain in your hips, your spine, rib cage, neck, really anywhere, it can affect you. We're all affected differently. Mine started in my hips, my si joints, progressed to the actual hip socket damage, and then worked its way up at spine for me So it's been a unique journey on my end. But I know other people have had completely different experiences. And you know, that's the great thing about the community is you can learn from others to help understand what your body is going through. So anyway, it's caused by excess inflammation in the joints. We know that people with ankylosing spondylitis can experience limitations in their ability to move because of the pain and inflammation. One thing we hear over and over is get up and move, you’ve got to get up a movement. And I agree with that, there are some with ankylosing spondylitis like myself, who after multiple hip replacements moving is not as easy I walk with a cane, and in many spots, I use crutches only because I've been having a pretty serious issues with my hips lately. So we're all different. I encourage you to do as much exercise in any given day as you can, because that movement is really going to help to keep you in the long run, feeling better. And then lastly, over time, your spine can fuse. This is what's called bamboo spine. Its kind of where the name of the disease started. And you can see somebody with it very distinctly because they'll generally be hunched over. You know, it's not hard to pick out chronic pain and Ankylosing Spondylitis. 

So, as Ankylosing Spondylitis progresses, you know, it progresses differently in everybody. Where I had a heavy attack in my sacroiliac joints and my hips when I was younger, others have it in their back, knees, ankles, wherever but one of the most common symptoms that accompanies the disease is the overall just chronic pain. Many AS patients are able to successfully manage their pain using over the counter medications and prescription pain medications. You know, the Nsaids, the heavy strength nsaids, the maloxicam, the Celebrex is whatever your body handles the best. I was on Celebrex for geez, I don't know 17-18 years, something like that worked really well for me. But I now have some kidney damage because I also took other stuff on top of it that I wasn't supposed to, to help. And well, I lost some kidney function, so that can be common for folks. Some people, however, experience what's called breakthrough pain that can feel intense and debilitating. For these people, the pain of a loss may further limit their activities. Experts recommend working with your medical team to develop strategies to manage pain, if you experience pain, even when you are taking pain medication. This may mean you have to tweak your pain medication; you may have to increase it by going and talking with your pain management specialist and seeing what options are available for you. The great thing is that today, there are so many options that did not exist. The best I could get when I was first diagnosed was Tylenol three. I'm not even sure if they even use Tylenol three anymore, but that was that was the epitome of medication you could get at the time. There were no any of these other pain meds So these along with a biologic to help control it, and you can have a fairly normal, I don't want to say pain free life, but you may be able to vastly reduce the pain by controlling the inflammation with a biologic. 

Once you have this chronic pain, how does it tie into depression? Well, depression is a common symptom for people dealing with chronic illness, as well as with chronic pain. Pain is perceived as a danger and triggers our threat or, you know, fight or flight response. Our bodies are wired to flee threats. But pain is an internal signal. And we tend to experience heightened stress, anxiety and fear in the face of long standing pain, especially when we can't escape it. If it's that day in day out, constant throbbing pain, no matter what you do, you can't get rid of it. That doesn't take very long; few nights have little to no sleep and you can feel like you're at your wits end. So for anybody, there with the young kids at home. Many days I just I wasn't a good father, I was too snappy with them wasn't helpful to my kids. So, you know, I understand when somebody says, I'm at my wit's end; I've been there. The challenge is that in an effort to call attention to this threat, that is our pain, our body becomes more sensitive to the pain signals, the more anxiety and distress we feel, the more threat sensitive areas of our brains become activated, which in turn increases our sensation of pain. It's a dog chasing its tail. Basically, it's just, the more we try to escape it the more we see it, the more we go after it just it's a never ending battle. So feeling trapped with this continual pain, and limited activity can cause people to become anxious and depressed. And those feelings can amplify the sensation of pain and can cause you to do less to experience fewer positive moments to counteract the difficult ones that we encounter. 

Depression and people living with Ankylosing Spondylitis to get a handle on how common depression is for people diagnosed with AS, researchers recently reviewed multiple studies. Their results showed that depression is common in as with mild depression occurring in 38% of people who were evaluated using a common tool to measure depression and 15%. Experiencing moderate depression. I don't know if those numbers aren't really actually higher, mild and moderate depression. In we're talking 48 53% of the people they ask, I'd really bet that that's maybe higher 60 70% the researchers also determined that people with greater levels of depression had more severe disease activity and more limitations on their ability to function. Well, that stands to reason if you're depressed, you're not sleeping. If you're not managing the inflammation, it's going to get out of hand and have a potential to do much more damage to a weakened body than one that's active strong eating well, so that's not an unusual thing is that you have much more ability to see the damage done. 

So treating depression could help in a few ways, because depression is known to increase pain, so it may contribute to patients experiencing more severe disease and more physical limitations. So overall, make sure that you are treating everything for Ankylosing Spondylitis. Make sure that you are talking to your doctor about a good biologic that works for you. If you can find a good one and it helps that will really set you on the right path, proper pain medications if you desire to go that route. On top of that, you know, it could be anything as simple as nsaids to some homeopathic medications. I'm not averse to using homeopathic I know I talk a lot about biologics, but a combination of the two certainly can't hurt. The key is to make sure that you're talking with not only your general practitioner, but also any of your other doctors you have. So they're all in loop of what you think the best treatment plan will be for you. 

And again, I thank everybody for listening. As I said before, the downloaded like 90 countries. Think about that 90 countries where people with ankylosing spondylitis around the world have listened to this same shows. We're really all tied together by this thing called ankylosing spondylitis. And well, it's not great. It does bring us all together. Please head on over to spondee podcast comm sign up for the newsletter. Drop me just a letter to say hello. And if you have any questions, don't hesitate to contact me at Jason at spondee podcast.com take care and I hope everybody has a wonderful week.

References:

1. Diagnosis of ankylosing spondylitis. Spondylitis Association of America. Available at https://www.spondylitis.org/Ankylosing-Spondylitis/Diagnosis. Accessed 1/28/19.
2. Ankylosing spondylitis. Lab Tests Online, American Association for Clinical Chemistry. Available at https://labtestsonline.org/conditions/ankylosing-spondylitis. Accessed 1/28/19.
3. Erythrocyte sedimentation rate (ESR). Lab Tests Online, American Association for Clinical Chemistry. Available at https://labtestsonline.org/tests/erythrocyte-sedimentation-rate-esr. Accessed 1/28/19.
4. C-reactive protein (CRP). Lab Tests Online, American Association for Clinical Chemistry. Available at https://labtestsonline.org/tests/c-reactive-protein-crp. Accessed 1/28/19.
5. Kim K, Cho C. Anemia of chronic disease in ankylosing spondylitis: improvement following anti-TNF therapy. Archives of Rheumatology. 2012 June;27(2):90-97. doi: 10.5606/tjr.2012.014. 
6. Anemia of chronic disease. National Organization for Rare Disorders. Available at https://rarediseases.org/rare-diseases/anemia-of-chronic-disease/. Accessed 1/28/19.
7. Lab test guide. Arthritis Foundation. Available at https://www.arthritis.org/living-with-arthritis/tools-resources/lab-test-guide/. Accessed 1/28/19.
8. Pain and your Emotions. Ankylosingspondylitis.net. Available at https://ankylosingspondylitis.net/living/pain-depression/?via=recommend-reading

Spondypodcast.com

And on a side note, I thought I'd give you all an update on training of the dog. My math is is not the best and I come to find out. He's gonna be six months old. He's not six months old now. So Bandit is doing great. We're working on the whole issue of taking a leash from me and holding on to it for a while. He doesn't necessarily like to do it, but he's food driven. So I've started to incorporate a few treats in it to get him to, you know, be more excited about actually, the process of working and, again, I have to remember he's not quite six months old yet, so he's really doing well. He sits at the door, waits for me to go through it, and then comes out. Heels pretty good. Really the biggest issue is, he's a bed hog. He'll jump up in bed with me at night and try to push me to where he wants me at in bed verse, him settling around me so we have a few challenges, so to speak, coming up with a form of who's in control. Roll it at nighttime when we go to sleep. But outside of that, he's just been a fantastic dog, extremely intelligent, really wants to work hard and please. So it's the first time I've ever had a Labradoodle first time I've ever really been around one, and they're just a fantastic dog. 

So with that on to todays show. So in today's episode, I thought I would really kind of take it back to some of the basics. I'm seeing a lot of people that are newly diagnosed or have a spouse or a child with ankylosing spondylitis, coming onto the forums on Facebook and asking lots of questions. This is by no means going to cover everything. But it's really good, I think, a starting point for a lot of people and a really good possible spot to reset for many of us that have had the disease for quite a while. So I'm going to start off with basically what is Ankylosing Spondylitis or as we talked about in the last couple episodes, using the terminology, axial spondyloarthritis, to be more inclusive of the people that have non-radiographic axial spondyloarthritis versus the radiographic. Listen to the prior two episodes episodes 50 and 51 so that you get a better understanding of that terminology that's becoming much more commonplace. 

So, again, Ankylosing Spondylitis, we know is a form of arthritis that primarily affects your spine. It does affect many other joints besides your spine, but the spine is where they start to look for the disease in the beginning, and that in conjunction with your sacroiliac joints, are really the two primary areas that they try to focus on. It causes severe inflammation of the vertebrae. This can cause and might eventually lead to chronic pain and disability. In advanced cases, the inflammation can cause new bone to grow along the vertebrae and other areas and this can lead to deformity or what we call bamboo spine, the hunched over look. That's what you see if you were looking at a side view of me. Ankylosing Spondylitis can also cause pain and stiffness in other parts of the bodies, your rib cage, as I said, your...]]>Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Well, welcome back to the show. It's great to have everybody listening and I wanted to do a couple things right up front. First, I got a really great review I wanted to share with you that came in via podchaser (see link at end of notes) and you can find a link to podchaser in the shownotes. If anybody wants to read further reviews, or even leave a review and hear me read it here. But this one says; Five stars. What an incredible resource. If you're newly diagnosed, or have been struggling with as for a while, you need to listen. Jason shares easy to understand information and conversations about the real life things we deal with. It's super positive Podcast, where you feel understood and empowered. Thanks, Jason, for all you're doing in the community. Well, thank you to the author of that review. That's what this is all about. I absolutely love it.

And on a side note, I thought I'd give you all an update on training of the dog. My math is is not the best and I come to find out. He's gonna be six months old. He's not six months old now. So Bandit is doing great. We're working on the whole issue of taking a leash from me and holding on to it for a while. He doesn't necessarily like to do it, but he's food driven. So I've started to incorporate a few treats in it to get him to, you know, be more excited about actually, the process of working and, again, I have to remember he's not quite six months old yet, so he's really doing well. He sits at the door, waits for me to go through it, and then comes out. Heels pretty good. Really the biggest issue is, he's a bed hog. He'll jump up in bed with me at night and try to push me to where he wants me at in bed verse, him settling around me so we have a few challenges, so to speak, coming up with a form of who's in control. Roll it at nighttime when we go to sleep. But outside of that, he's just been a fantastic dog, extremely intelligent, really wants to work hard and please. So it's the first time I've ever had a Labradoodle first time I've ever really been around one, and they're just a fantastic dog. 

So with that on to todays show. So in today's episode, I thought I would really kind of take it back to some of the basics. I'm seeing a lot of people that are newly diagnosed or have a spouse or a child with ankylosing spondylitis, coming onto the forums on Facebook and asking lots of questions. This is by no means going to cover everything. But it's really good, I think, a starting point for a lot of people and a really good possible spot to reset for many of us that have had the disease for quite a while. So I'm going to start off with basically what is Ankylosing Spondylitis or as we talked about in the last couple episodes, using the terminology, axial spondyloarthritis, to be more inclusive of the people that have non-radiographic axial spondyloarthritis versus the radiographic. Listen to the prior two episodes episodes 50 and 51 so that you get a better understanding of that terminology that's becoming much more commonplace. 

So, again, Ankylosing Spondylitis, we know is a form of arthritis that primarily affects your spine. It does affect many other joints besides your spine, but the spine is where they start to look for the disease in the beginning, and that in conjunction with your sacroiliac joints, are really the two primary areas that they try to focus on. It causes severe inflammation of the vertebrae. This can cause and might eventually lead to chronic pain and disability. In advanced cases, the inflammation can cause new bone to grow along the vertebrae and other areas and this can lead to deformity or what we call bamboo spine, the hunched over look. That's what you see if you were looking at a side view of me. Ankylosing Spondylitis can also cause pain and stiffness in other parts of the bodies, your rib cage, as I said, your vertebrae, your shoulders, your neck, your hips, of course, knees, feet, pick a spot where there's ligaments, muscle, tendon, and you're liable to have the ability to get ankylosing spondylitis there. 

So what are some of the symptoms of AS well, they really can vary, and that's probably one of the hardest things for people that are newly diagnosed to come to grips with AS that come on and ask, Well, are you getting this? Are you getting you that? And they don't always like to hear that. It's really kind of sometimes put back at them of saying, “it depends”. You might, we didn't, some did, and some didn't. It's that's probably one of the hardest things to come to grips with. When you first get it as there are not the set criteria of, you've got Ankylosing Spondylitis, you're going to get these 2,3, 5 things, whatever those may be. So we do know though, that some of these things are more prevalent than others. And the most common symptom is back pain in the morning, but some people have it at night. You may also experience pain in large joints, such as the hips and the shoulders. For me, it's always been the hips. The hips are my worst spot on me. I've had multiple hip replacements, say that joints are all fused. So it's been like that since I was a young kid that's been the source of most of my pain, but other symptoms can include early morning stiffness, poor posture, stooped shoulders, loss of appetite. This comes usually when you're in so much pain that just the thought of eating doesn't even make sense. Low grade fever that presents itself and some, especially if their inflammation is out of control, weight loss. Now it could be the opposite of that to have weight gain. Because if you are taken out of the ability or function to be mobile, exercise, walk around, do the stuff that tends to burn calories, you can actually have weight gain. Fatigue is very common. I've done an episode or two on fatigue and that's just a never ending battle, I think for all of us with ankylosing spondylitis, tying into the fatigue is anemia or low iron, and then finally reduced lung function. And that can be as you're potentially having your rib cage fuse, you can see a reduced or reduction in the, the lung function that you have. That's one thing I've managed to do my whole life. My rheumatologist told me this when I was first diagnosed, I was 14. He said every morning when you get up, sit on the edge of the bed and do 5 to 10 deep breaths. You know, do it twice. So that's the one thing I've just kind of done. Really religiously, is to take those deep breaths every morning when I get up. And maybe it's helped. Maybe I was never going to get the fusing in my lung area. But I like to think that it's helped because ankylosing spondylitis involves inflammation. As I mentioned before other parts of your body can be affected as well. People with AS may also experience inflammation in the bowels, mild eye inflammation. If it's not taken care of that mild eye inflammation can become very, very bad inflammation, ie uveitis or, or iritis, and I've done several episodes on that checkout, I think it's Episode 49. It's very important to keep an ophthalmologist on call if you have Ankylosing Spondylitis. 

Ankylosing Spondylitis is primarily a condition of the spine. It can impact other parts of the body too. And so it's just a disease that can run rampit through you once that inflammation gets going. So what causes ankle injury spondylitis? Well, the simple answer that is currently we don't know. It's unknown. This disorder can run in families. So genetics probably play a role. If your parents or siblings have ankylosing spondylitis research estimates you're 10 to 20 times more likely to have it as somebody with no family history. But I come from a family with no family history of it. So I was the first one. So the genetics are there somewhere. I don't know if they came from my mother's side or my father's side. But we have no history of anybody in the family having ankylosing spondylitis before me. So who's at risk for Ankylosing Spondylitis? Well, as I mentioned earlier, if you have a family history of Ankylosing Spondylitis, that's a risk factor, along with the presence of the HLA-B27 protein. According to a 2002 study now this is obviously old. More than 90% of people who receive a diagnosis this condition have the gene that expresses this protein. So, again, it's it's one of the markers that they look for. Not everybody that has AS has the HLA-B27 gene, and not everybody with the HLA-B27 protein develops AS, so it's just an item that could potentially make you more at risk. Age, unlike other arthritic and rheumatic disorders, initial symptoms of Ankylosing Spondylitis often appear in younger adults. Symptoms often appear between the ages of 20 and 40. Mine started when I was about 9 or 10 years old, and I was diagnosed at 14 and there's quite a few people I see on line that also share that early early diagnosis. Here's one that's been controversial for many years, Sex, ankylosing spondylitis is around three times more common in males, but is seen in females as well. And that's where this is dated, and some of the research has changed just in the last couple of years. Remember when I discussed Axial spondyloarthritis in the last episode with Mike Mallinson? Well in that episode we talked about that there's, if you have radiographic axial spandyloarthritis, you're then told you have as Ankylosing Spondylitis. If you have non-radiographic, it's left as non-radiographic, but it's still all the same symptoms, all the same pain, all the same conditions. Everything's the same, you're just not showing the fusing easily on x rays, as was mentioned in Episode 51, with Michael Mallinson, what they're starting to see come to light is that if you look at the radiographic axial spondyloarthritis where it's shown on the X rays, that's about two thirds men and one third women. And when you look at the non-radiographic, axial spondyloarthritis, that's about two thirds women, and one third men, when you mesh them up, you still get about an even one to one ratio of men to women, and it's just the way the disease starts and maybe continues to stay in women. So it I think watch for this over the next few years I think this is one of the biggest things that you're going to see rewritten and read discussed and rehashed is the amount of women that actually have it and may have been told they have a degenerative disc disease or something of that nature which is really not what they have. It's it's more of a function of non-radiographic axial spondyloarthritis. Ethnicity, this condition is more common in Caucasian descendants than those of African descendants or other ethnicities. But when you get online, you will see all ethnicities represented. So it might be more common in Caucasians, but you'll see everybody discussing it from across all racial spectrums. 

So how is Ankylosing Spondylitis treated? Well, there's no cure for Ankylosing Spondylitis and anybody tells you there's a cure for it, is flat out wrong. There's ways to manage the pain, there's ways to prevent disability, especially with the medicines that are currently available to folks. And that's namely, you want to get proper timely treatment to help reduce that inflammation, that inflammation is what's going to do all the damage to you. And then once you reduce that inflammation, you can possibly stop the progression of the fusing, and any future damage that could come along from that and really lead a fairly normal life if your medicated and take care of yourself in the right way. Medications, the main one that everybody is usually started off with his non-steroidal anti-inflammatory drugs like ibuprofen, naproxen, things of that nature. They tend to be long acting drugs and are generally safe with few complications. I took them for a long time, Celebrex, ibuprofen, all of it I ended up with diminished kidney capacity. So at this point, I'm no longer taking any NSAIDs but they are the standard go to and I was on them for 30 years. When NSAIDs no longer provide enough relief, your doctor may prescribe stronger medications. Corticosteroids are commonly prescribed for the short term. This medication is a powerful inflammatory fighter so it can ease symptoms and slow damage to and around the spine. Then there are the tumor necrosis factor inhibitors, TNF. These are drugs like Enbrel, Humira, Remicade, they can block inflammation triggers in your body, you started to see these recommended much quicker in the process to again, better get control of that inflammation and bring down that inflammation and then use NSAIDs as something on top of it to help with what little pain might remain. So, the anti-TNF drugs like Enbrel, Humira, Remicade act to prevent inflammation and they may ease joint pain and stiffness surgery If you have severe damage or deformity like knee or hip joints, a joint replacement surgery may be necessary. Likewise, an osteotomy may be performed on people with poor posture that's caused by the fusing bones. During this procedure, a surgeon will go in and they'll cut the spine and and realign everything to try to straighten you back out. I've always been kind of interested in this and going to put a question out I think to see if any of you have ever had it. Go out to spondypodcast.com, use the Contact to shoot me a message if you've ever had one of those. I'd like to know the outcome. You know, treatment relies largely on how severe the condition is, and how troublesome the symptoms are. Somebody might never need anything done, completely control it by medication. Others could be quite far advanced and do just a number of surgeries to control what they're dealing with. 

Here's a big one. Are there any natural treatments for Ankylosing Spondylitis in it? In addition to more traditional medical treatments, some natural remedies may help ease symptoms of Ankylosing Spondylitis. These treatments may be used alone; they may also be combined with other treatments. Make sure that's very important to talk to your doctor about which of these are safe to use. And if any of them are safe to use with any current medications you're on, and could something be substituted. Please, please don't just take people's advice from the website. Don't ever stop medications that doctors have prescribed you. Always talk to your doctor about them. But some of the options for natural treatment of it are, a.) Exercise, we all know that if you can walk any movement doesn't have to be going to the gym, just walk across your living room. Walk, you know up and down some stairs if you have them. Anything to get the body moving is going to be beneficial to you in both the short and long term. B.) Stretching is another important one; it can make the joints more flexible and help to improve your strength. And this can lead to less pain and better range of motion and your joints. So if it's standing up and standing straight against the back of with your back against the wall, push ups, laying flat on the floor, laying flat on a bed, face down or on your back, whichever way helps you to stretch. And if you have a spouse or a significant other, that can help you move your legs, move your arms, anything they're willing to do to help you stay flexible, and stretch is going to be beneficial. c.) Posture training, stiffness in the spine may encourage bad posture. Over time, the bones and the spine confused together in a slouching or slumping position. You can reduce the risk by practicing good posture. Because this may not come naturally after years of poor posture, you may need to encourage better posture with reminders to correct your posture regularly. Somebody might have to walk along and say to sit up straight, sit up straight. And, you know, get a good chair that's got a good back to it. A lot of times those items that you can wear that go around each shoulder and you pull your shoulders back, on your back, those can sometimes be more detrimental than helpful. So again, any of those posture correcting devices that you wear, I would highly encourage you to talk to your doctor before using something of that nature, d.) Heat and cold therapy. Now I don't respond to cold, but I do to heat so heating pads, warm shower, those can all help to ease some of the pain and stiffness in your spine and other joints. If you respond to cold and icepack might help to reduce inflammation in a painful joint, a knee, hip, anything of that nature. e.) Acupuncture, you know this is something I've really wanted to try. It's an alternative treatment may help reduce pain and other symptoms of Ankylosing Spondylitis. It does so by activating natural pain relieving hormones. Again, also go to spondypodcast.com and contact me if you've used acupuncture before, I'd really be interested to hear about it. And finally, I like this one; f.) Massage therapy, I love to have a massage done, where they really work hard on my back to get in there and push hard on my back. So, in addition to being relaxing and invigorating massages can help you maintain flexibility and approve range of motion. Be sure to tell your massage therapist that you have Ankylosing Spondylitis, they can be aware for the tender points around your spine. Many treatments for Ankylosing Spondylitis are also smart practices for a healthier life. So you know, just make sure that you discuss all of these options with your doctor so that he or she can go over them and say, which may or may not be beneficial and how to best incorporate them into your treatment. 

Can diet help treat Ankylosing Spondylitis? Well there's no real you know, one size fits all diet for Ankylosing Spondylitis, you will see the autoimmune diet plan I that's not the exact name but it's escaping me. There's No sugar, No grains (Episode 3). There's all sorts of diets out there. And we're all going to respond to a little bit different things. But there are some, some basics to make sure to include in your diet. You want to try to include foods that are rich in omega three fatty acids, you know, fish nuts, and some oils. A wide variety of fruits and vegetables are good. Now, they talk about whole grains, but I actually I don't tolerate the different grains very well, and I know I've seen other people comment that they don't so it's really up to you and foods with active cultures as well. So things like yogurt are good. To a degree, try to limit some of your dairy intake dairy has been shown to increase inflammation. So if you like to drink milk and things you may want to consider cutting back on that if you can. Now cut down or eliminate foods that are, you know rich in fat sugars and salts. This includes anything highly processed. Box, bagged, canned foods are usually really high and chemicals and salts, and preservatives and trans fats, and all of those can make inflammation worse. Also, you might want to consider limiting how much alcohol you drink or avoided if you can. I rarely have a drink anymore. I do like to have a nice cold beer on occasion with the Mexican dinner but pretty much outside of that. The alcohol tends to have some interactions with my medication so I just I stay away from it and and many cases that may work best for you talk with your doctor about it. 

Can exercise help Ankylosing Spondylitis? Well, the basic answer that is yes, Daily exercise doesn't have to be again, you don't have to go out and run a marathon. You don't have to be lifting heavy weights. Any type of movement is good. You know, do some squats at your kitchen table, use a chair, do some leg lifts if you can, some real basic yoga, deep breathing, stretching, swimming if you have access to a pool, lake, river wherever. Swimming is fantastic for Ankylosing Spondylitis. And then make sure to...]]>d096f8d3-cd85-48e3-aedf-faf69a702ec4Sun, 31 May 2020 09:00:00 -040028:01falsefull5252Michael Mallinson - Discusson about Axial SpondyloarthritisJayson:

Michael, welcome to this episode of the Ankylosing Spondylitis podcast. And based upon the introduction and what we're going to cover today, I may have to change that name at some point down the road. Welcome to the show.

Michael

Thank you, Jayson. And thank you for having me. And yes, there's certainly time to change terminology around our disease.

Jayson:

Well, I was diagnosed 35 years ago, things tend to change slowly. So hopefully, I'll get around to figuring that out and what I want to do and how we structure it, but you know, you and I met through a forum on Facebook that deals with ankylosing spondylitis and the whole disease structure itself. You've made multiple posts that have been met differently with people's reactions on why the correct terminology might not be calling the disease itself ankylosing spondylitis, but maybe better off calling it Axial Spondyloarthritis. Tell me a little bit about that.

Michael:

Well, I can I understand why people are married to the next Ankylosing Spondylitis because like you that's what I was diagnosed with. And after my disease onset 40 years ago, but times change the technology changes, and also the name Ankylosing Spondylitis was never a universally used name, still isn't. In many parts of Europe, especially German speaking countries, the disease is referred to as Mobis Bechterew. In Russia, for example, it's named after Vladimir Bekhterev who was a Russian doctor who documented some of the symptoms of Ankylosing Spondylitis, but it's also been called Marie-Strumpell disease as well after two researchers who described the disease but what's more important, from our point of view is that Axial Spondyloarthritis is very difficult to diagnose. Originally, it was diagnosed by X ray radio graphically. So back in 1973, people recognized that there was a very common association with the gene HLA-B27 and spondyloarthritis. And looking into that further, they started seeing that people with Axial Spondyloarthritis or then called Ankylosing Spondylitis had this radiographic stage. And that was used as a diagnostic tool. There are no diagnostic criteria for this disease, but there are lots of different classifications. So, if you had radiographic sacral sacral le itis, and you displayed some other spondyloarthritis symptoms like family history or morning stiffness, etc. You were diagnosed with Ankylosing Spondylitis, then MRI came into being in the 1970s By the 1980s it was out there in the general hospital population and in general use and people who could read MRIs started noticing that if they were taking an MRI of the sacroiliac joint, they could see sacroillitis. But was this the same as the sacroillitis evident by X ray in Ankylosing Spondylitis? And there was a long debate about that. And that debate really wasn't resolved until the last year or two. So it's now understood that what we call Axial Spondyloarthritis is a continuum of disease from what had been called non-radiographic axial spondyloarthritis through to radiographic axial spondyloarthritis. So it's all recognized as one disease. And the important thing about that is that to exclude people, from patient organizations from help and support from the treatments available for Ankylosing Spondylitis, because they have non-radiographic axial spondylitis writers is extremely unfair. The disease burden is the same. Somebody with non-radiographic axial spa has exactly the same symptoms, the same pain, the same stiffness, the same mental issues as somebody who they ankylosing spondylitis. There's a further important part and that is that we know from a lot of evidence that the earlier the treatment, the better the outcome for the patient. So if you're waiting 6,7,8,9,10 years for diagnosis, and you don't get onto a treatment plan, until you're sort of seven or eight years into your disease progress. That's pretty serious, because by then you could have disfigurement, you could]]>Jayson:

Michael, welcome to this episode of the Ankylosing Spondylitis podcast. And based upon the introduction and what we're going to cover today, I may have to change that name at some point down the road. Welcome to the show.

Michael

Thank you, Jayson. And thank you for having me. And yes, there's certainly time to change terminology around our disease.

Jayson:

Well, I was diagnosed 35 years ago, things tend to change slowly. So hopefully, I'll get around to figuring that out and what I want to do and how we structure it, but you know, you and I met through a forum on Facebook that deals with ankylosing spondylitis and the whole disease structure itself. You've made multiple posts that have been met differently with people's reactions on why the correct terminology might not be calling the disease itself ankylosing spondylitis, but maybe better off calling it Axial Spondyloarthritis. Tell me a little bit about that.

Michael:

Well, I can I understand why people are married to the next Ankylosing Spondylitis because like you that's what I was diagnosed with. And after my disease onset 40 years ago, but times change the technology changes, and also the name Ankylosing Spondylitis was never a universally used name, still isn't. In many parts of Europe, especially German speaking countries, the disease is referred to as Mobis Bechterew. In Russia, for example, it's named after Vladimir Bekhterev who was a Russian doctor who documented some of the symptoms of Ankylosing Spondylitis, but it's also been called Marie-Strumpell disease as well after two researchers who described the disease but what's more important, from our point of view is that Axial Spondyloarthritis is very difficult to diagnose. Originally, it was diagnosed by X ray radio graphically. So back in 1973, people recognized that there was a very common association with the gene HLA-B27 and spondyloarthritis. And looking into that further, they started seeing that people with Axial Spondyloarthritis or then called Ankylosing Spondylitis had this radiographic stage. And that was used as a diagnostic tool. There are no diagnostic criteria for this disease, but there are lots of different classifications. So, if you had radiographic sacral sacral le itis, and you displayed some other spondyloarthritis symptoms like family history or morning stiffness, etc. You were diagnosed with Ankylosing Spondylitis, then MRI came into being in the 1970s By the 1980s it was out there in the general hospital population and in general use and people who could read MRIs started noticing that if they were taking an MRI of the sacroiliac joint, they could see sacroillitis. But was this the same as the sacroillitis evident by X ray in Ankylosing Spondylitis? And there was a long debate about that. And that debate really wasn't resolved until the last year or two. So it's now understood that what we call Axial Spondyloarthritis is a continuum of disease from what had been called non-radiographic axial spondyloarthritis through to radiographic axial spondyloarthritis. So it's all recognized as one disease. And the important thing about that is that to exclude people, from patient organizations from help and support from the treatments available for Ankylosing Spondylitis, because they have non-radiographic axial spondylitis writers is extremely unfair. The disease burden is the same. Somebody with non-radiographic axial spa has exactly the same symptoms, the same pain, the same stiffness, the same mental issues as somebody who they ankylosing spondylitis. There's a further important part and that is that we know from a lot of evidence that the earlier the treatment, the better the outcome for the patient. So if you're waiting 6,7,8,9,10 years for diagnosis, and you don't get onto a treatment plan, until you're sort of seven or eight years into your disease progress. That's pretty serious, because by then you could have disfigurement, you could have kyphosis, you could have fusion, etc. That could have been prevented if you had been diagnosed earlier. And treated earlier. So with the X ray, the big problem was that it takes about seven or eight years for sacroilitis to show up on X ray and MRI can see that sacroiliac status after about 18 months or 24 months from disease onset, so it's evidently better to get people on a treatment plan 18 or 24 months after disease onset than seven or eight years. And so as I say, I think that terminology is important to being all inclusive of this full spectrum of disease and to include those people who are diagnosed with MRI imaging in our discussion about axial spondyloarthritis, ankylosing spondylitis.

Jayson:

When you and I discussed this, obviously you're in Toronto area in Canada. I'm here just across the lake in Michigan and when I was diagnosed I was 14 years old, had had pain from about 9 or 10. It always had been attributed to, you know, “growing pains”. And when I went and saw my rheumatologist for the first time in 1984, he asked just a couple of basic questions and said, Tell me about this, this and this, this and this. He goes, you have Ankylosing Spondylitis. Now let's do the testing to prove what I think is going on. So for me, in my mind and my process, it was always you went to a rheumatologist. They asked you a few questions. You were diagnosed. They then did an MRI, which was a newer process, but he did X rays that an MRI, bloodwork and boom, you've got Ankylosing Spondylitis. 

Michael:

Yeah. 

Jayson:

Then I never met anybody else that had Ankylosing Spondylitis. So I didn't know that anybody else went through these 7,8,9,10, 20 year battles. So when I started hearing that from people I was like, wow, that's amazing. I had no clue that that even existed. It was really an eye opener for me.

Michael:

Well, maybe you're one of the lucky ones? But on the other hand, if you started with symptoms at nine, which is not altogether unusual, and weren't diagnosed until you're 14, the six years where you might have had more mental relief, because you because you could have known that it wasn't just in your head or just, you know, growing pains or something. And one of the things that you didn't quite address there didn't touch on is the male to female ratio because females are notoriously bad at being diagnosed and that doctors used to think of Ankylosing Spondylitis as a men's disease. I'll come back to that in a moment to a degree. But women take two years longer than men on average to be diagnosed. And part of it is because many of them were diagnosed erroneously, with fibromyalgia Instead of AS so when you show all these symptoms of pain and stiffness, etc Uveitis your doctor isn't up to date and doesn't know about Ankylosing Spondylitis as many GPs do not, then it's going to be a long, long, long journey to diagnosis, especially if people are looking for other reasons like Fibromyalgia or endometriosis or something and women.

Jayson:

Well, it was quite interesting. And again, a lot of my interaction with people is online. So one of the people mentioned something about women having degenerative disc disease. One of the things mentioned I saw online quite relevant was all these women kept coming back and saying I have degenerative disc disease. And I started wondering is that really the case? Or were you diagnosed with that beforehand, along with saying you had fibro or something of that nature? And then a third diagnosis of Oh now, you have non radiographic or you have Ankylosing Spondylitis, it's radiographic and really you don't have a degenerative disc disease. It's just a function of what's going on with the Ankylosing Spondylitis with the axial spindyloarthritis.

Michael:

Well, yes, and I understand the difficulty for women because some, you know, doctors some don't know a lot about Ankylosing Spondylitis to begin with, never mind the term axial spondyloarthritis. And of course, women present a little differently than men. Even with ankylosing spondylitis for men, it's usually in the sacroiliac joints, whereas women, they often start with pain in their hips and shoulders. So it doesn't actually first present actually. And so what's the doctor to do if they don't know that? And of course, the other difficulty is that about 90% of the population at some time or other, speak to their doctor about back pain. Of course 99% of that back pain is mechanical. Our interest is that 1% that is inflammatory back pain. So doctors may go off on the wrong direction right from the start and diagnose degenerative disc disease and not really be cognizant of the fact that there is an inflammatory back pain disease. But yeah, it's not an easy disease to diagnose. And what I hope the new terminology axial spondyloarthritis allows for is more an earlier diagnosis. And I also hope it's a term that's used more universally, it's used very, very widely in Europe. Now, in America, it seems that the knowledge translation is somewhat slower, and people have really not adapted this term yet.

Jayson:

Well, we take a while to change here. You latch on to something and it kind of sticks in where I was going with that is here in the States. One of the preeminent places for treatment of the spondyloarthritis is the Cleveland Clinic. And you made a very good point that I hadn't even paid attention to until I went and looked at the website was Dr. Khan, who is a very well known expert in in this disease and an author. His first book was just Ankylosing Spondylitis.

Michael:

It was 

Jayson:

His second book was then Ankylosing Spondylitis - Axial Spondylitis. Now, his third book, his most recent one is just Axial Spondyloarthritis. He's taken a more holistic or a much larger, say 30,000 foot look at the disease and said, here's what we have. And as you pointed out, it's kind of removing that term of Ankylosing Spondylitis and trying to make a more generic or a more universally used term.

Michael

Well, it is a more universally or it has a potential to be more universally used and it also gets rid of this term, non-radiographic axial spondyloarthritis which is quite a mouthful. As I mentioned before the disease burden is the same between non-radiographic and radiographic stages of axial spondylitis arthritis. But there are some interesting differences with Ankylosing Spondylitis, which is the radiographic stage of axial spondyloarthritis. It's about two-thirds to one-third men to women. And it's not really clearly understood why the non-radiographic stage doesn't always progress to the radiographic stage. But Conversely, the non-radiographic stage we see more in women so it's two-thirds women and one-third men. So if you add the two together for axial spondyloarthritis as a whole, it's a one to one relationship and that's, that's important to note because women were poorly diagnosed and had a longer time to diagnose in the past. So the non-radiographic stage allows them to be diagnosed earlier. But the other thing about calling the whole disease spectrum, axial spondyloarthritis now as researchers, leading clinicians are starting to do instead of breaking it into the two stages is that it allows people with early non-radiographic stage of disease to have the same treatments that people with ankylosing spondylitis have, in other words, biologics. I don't know about the situation in the United States, but in Canada there's only one biologic actually approved for non-radiographic axial spondoloarthritis at this moment, I think they will all be approved eventually. But as we know, the earlier the diagnosis, the earlier the treatment, the better the outcome.

Jayson:

Sure and as we mentioned biologics, there's been debate raging across a lot of places and personally, I think the debate is driven by money, but many are, but there's that new class coming out which are biosimilars. Think of biosimilars as a generic for a name brand medication. So there's a huge, I don't know if there's a huge price discrepancy between a biosimilar and the name brand, as far as you know, when you and I as patients look at the medication costs, but I know there's a lot of dollars on the line for the manufacturers. So have you noticed in the Canadian side that there's been a lot of acceptance of the biosimilars from patients how, how has it worked on there because I, I've not even had a biosimilar ever offered to me here in the States.

Michael:

It's interesting, in the states you have a very, very, what is it devious, corrupt, medical system when it comes to the payment for medications. So in the States, you do not see a big price difference between the originator biologic and the biosimilar of that biologic. In Canada, it's a much much more pronounced difference. So, for example, if I look at Humira the well that's not a good example, let's look at Remicade. The Infliximab-dyyb, the actual biosimilar is about half the price, maybe 60% of the price of the originator. And so that's pretty significant and it's why there's been quite a discussion in Canada about the uptake and the acceptance of biosimilars. We unfortunately were subject to some misinformation propoganda in fact from some of the pharmaceutical companies I won't name them, but they were the ones whose biologics were coming off patent first. And they were telling patient organizations, that these biosimilars were not the same. They were similar but not the same. They were made in crappy facilities in crappy countries like Korea and India, and that there were problems with the naming convention so that, you know, people wouldn't know what drug they are actually on if it was the originator or the biosimilar. All of these things proved to be very, very wrong. And in Canada, I think we were fairly advanced about it patient organizations, at least some of them didn't have the wool pulled over their eyes with that propaganda and accepted the fact that biosimilars are the same as originators and how can I say that when they called biosimilars, I was very fortunate to attend the National Institute for bio processing research and training in Dublin, Ireland and quite a few years ago and see how bio logics are made and understand what biosimilars are. So the thing to understand about a biologic is that the biologic that you take today is not the same as the biologic that you took last time. And that's because the manufacturing process is so complex, that they can't always get it spot on. It's not like generic drugs, which are small molecule chemical drugs, a biologic molecule, it's a large living molecule, very, very complex, and the production is allowed within tramlines variance. So that variance happens in the manufacturing process naturally, and in fact, you can get a trend in one direction or the other. So, the Humira or the Remicade that you take in North America is not the same as the Remicade or Humira that you take in Europe because of this diverging trend from the original. When biosimilars were approved, they were approved, not on the basis of chemical trial of sorry, clinical trials. They were approved on their chemical similarity to the originator by biologic, they will give tighter lines of variants. So in fact, a biosimilar of Remicade is actually closer to the original Remicade than the Remicade may be that somebody is taking at the moment. Does that make sense?

Jayson:

It does. Yes. It's squirrely, but it makes sense.

Michael:

In fact, a biosimilar is closer to the original biologic than a generic drug is to its original chemical drug. And that is because when you look at a generic drug, I don't know what it is some sort of aspirin say, it's got fillers and stuff and you don't know what else it's got in. It's got its active ingredients, and then it's got fillers and adherence and stuff in there to hold it together in pill form. So it is less like the originator drug than the biosimilar is like to its originator, biologic, so they are in you know, it's the same drug. If you are taking Remicade and you go on to inflectra which is one of the biosimilars for Remicade. It's all the same drug, it's it's there is no difference. That is of any significance whatsoever. That's the thing that patients need to understand because in Canada, we have 19 different health systems here, each province read state, each province has its own healthcare system and then there's some healthcare systems for veterans, etc. But each province within its health care system has a drug formulary. And they decide on which drugs are going to be made available. And they negotiate the prices in conjunction with the other provinces with the manufacturers. So if a manufacturer is coming along and saying, hey, I've got a biosimilar and it's 4050 60% cheaper than the originator, those drug formularies are going to look up and say, Wow, we need to do this because our medical costs are going sky high. And you know, all these so called orphan diseases with specialist drugs and biologics are hugely expensive. We To decrease our costs, there's a huge saving to the health care system and society. If we allow biologics to be paid for by the province, then if they can reduce that cost with biosimilars, that's even better. And following the scientific evidence, they said, well, we're actually going to make patients switch from the originator to the biosimilar. And there was a bit of a hue and cry about this because of the, shall we say propaganda efforts put out by the pharmaceutical companies. But in the end, in the case of British Columbia, which was the first province to do this, there was a lot of hue and cry. But in the last analysis, the switchover went very smoothly and better than anybody expected, because one of the effects of the letters that pharmaceutical companies sent out to patients on that drug, telling them to be aware of biosimilars was Those patients took that letter to their doctor. Their doctor explained it properly. And they said, Oh, sure, I'll switch to the biosimilar. So it kind of backfired on them.

Jayson:

Laws unintended consequences.

Michael:

Yes, Yes, exactly. So in British Columbia, there was a very, very good uptake of the biosimilar. And that's now rolled out in Alberta. And it's coming to all the other provinces as well. And I think that's a good thing for society, because it means less cost in the healthcare system. And it's also a good thing because you take somebody who might otherwise not have been at work if they can get on a biosimilar now because it's affordable, and they're back at work, and they're paying taxes and, you know, sustaining society.

Jayson:

So is it the case where, like, if I, if I went 20 miles away, I'm in Canada, I'm in Sarnia. Yeah, if I was living there, which is part of Ontario, if I'm a new person, like I walk in the door, I'm diagnosed and they say let's try you on Remicade infusions. Am I going to get Remicade? Am I going to get the biosimilar? I'm going or am I going to get a choice?

Michael:

You will not get a choice new patients go on the biosimilar.

Jayson:

Okay and I've not heard any complaints. I've not seen anybody welling up and saying it, besides the fact that Remicade style medication might not be the appropriate biologic for you, I've not heard anybody say, the biosimilar isn't, and I guess you really wouldn't know if you're on a biosimilar whether it was better or worse than the actual name brand version, but I've not seen any welling up of people complaining one way or...]]>9c4a5ec1-da27-47e9-aa6f-4b7355a77911Sun, 24 May 2020 09:00:00 -040058:19falsefull5151Axial Spondyloarthritis - The BasicsHello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's really hard to believe this is episode number 50 and I really never thought that I would get this far. Well, it's not a huge number of episodes, it's still kind of a milestone and that I didn't know what would happen when I started this, if anybody would even listen. So it is kind of cool to reach that 50-episode mark. So I'm really happy about that. I also want to say that there's been a new addition to the family here for me, and that is my six-month-old Labradoodle named Bandit. He's in training to be my service dog, and I will be doing the training. He was started off by in a group called freedom fighters. I did an episode with a gentleman named Matt Burgess (https://podcasts.captivate.fm/media/27300c98-d40c-4e62-a9ed-85956c4a7f2e/as-ep-027-matt-burgess-freedom-fidos.mp3) a while back where I talked about Freedom Fidos (www.freedomfidos.org) and then got him, he’s now he's six months old. We're starting to do the training and he's picking up on a lot of stuff. We're already at good spots where we're going in and out of doors. With no hassle he sits down, waits for me to tell them it's okay to come to the door. I can tell you what, I've never had a dog that's done that before. So just that training is cool alone. I introduced him to me walking on crutches the other day to see how he would respond and he's done real well with everything. So listen, there'll be updates coming occasionally on how that's going and follow on Instagram, it's @as_podcast, where you'll see pictures of them and different things like that. So that's pretty cool, as we roll into this 50th episode, I also wanted to mention that we've climbed up and we're been now in a total of 89 countries. We've had other folks with Ankylosing Spondylitis listened to the show. So again, that's all wrapped up together. That's just amazing to me. So make sure you head over to spondypodcast.com and sign up for the occasionally when I feel like sending it out newsletter and make sure if you really could do me a huge favor. Go to the show notes of this episode, there's going to be a link to podchaser.com. I would love it, absolutely be grateful to anybody that would leave a review of the show. I'd love to ramp up the number of reviews out there on the show. I've received a ton of great feedback from so many of you. I'd like to see that reflected in reviews as well on podchaser. 

So that kind of covers those and let's get into today's episode. In today's episode, I want to talk about Axial Spondyloarthritis. Man, that's a mouthful to even just say, let alone think about. So what is Axial spondyloarthritis? Well, it is a type of inflammatory arthritis that causes lower back pain among other symptoms, you know, affecting not only your lower back but your si joints, hip joints, knees, spine. So there are two main types. There's Non-Radiographic Axial Spondylitis and then there's Ankylosing Spondylitis. Most people are going to be familiar with the term Ankylosing Spondylitis and hearing these other terms, put in there can be new for a lot of people. So we do know that Axial Spondyloarthritis can be debilitating and progressive, you know, so you always want to make sure you're seeing a rheumatologist as soon as you think that there's any type of issue you might be dealing with. Talk with your family doctor, if they can get you a referral to a rheumatologist to make sure that you're progressing on the right treatment path. 

Just in America, around five and a half million Americans have Axial Spondyloarthritis. You know, again, it's an inflammatory form of arthritis and it's associated with chronic back pain. In my case when I got it, it was really chronic hip pain. It was the si joints. When it came at me...]]>Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's really hard to believe this is episode number 50 and I really never thought that I would get this far. Well, it's not a huge number of episodes, it's still kind of a milestone and that I didn't know what would happen when I started this, if anybody would even listen. So it is kind of cool to reach that 50-episode mark. So I'm really happy about that. I also want to say that there's been a new addition to the family here for me, and that is my six-month-old Labradoodle named Bandit. He's in training to be my service dog, and I will be doing the training. He was started off by in a group called freedom fighters. I did an episode with a gentleman named Matt Burgess (https://podcasts.captivate.fm/media/27300c98-d40c-4e62-a9ed-85956c4a7f2e/as-ep-027-matt-burgess-freedom-fidos.mp3) a while back where I talked about Freedom Fidos (www.freedomfidos.org) and then got him, he’s now he's six months old. We're starting to do the training and he's picking up on a lot of stuff. We're already at good spots where we're going in and out of doors. With no hassle he sits down, waits for me to tell them it's okay to come to the door. I can tell you what, I've never had a dog that's done that before. So just that training is cool alone. I introduced him to me walking on crutches the other day to see how he would respond and he's done real well with everything. So listen, there'll be updates coming occasionally on how that's going and follow on Instagram, it's @as_podcast, where you'll see pictures of them and different things like that. So that's pretty cool, as we roll into this 50th episode, I also wanted to mention that we've climbed up and we're been now in a total of 89 countries. We've had other folks with Ankylosing Spondylitis listened to the show. So again, that's all wrapped up together. That's just amazing to me. So make sure you head over to spondypodcast.com and sign up for the occasionally when I feel like sending it out newsletter and make sure if you really could do me a huge favor. Go to the show notes of this episode, there's going to be a link to podchaser.com. I would love it, absolutely be grateful to anybody that would leave a review of the show. I'd love to ramp up the number of reviews out there on the show. I've received a ton of great feedback from so many of you. I'd like to see that reflected in reviews as well on podchaser. 

So that kind of covers those and let's get into today's episode. In today's episode, I want to talk about Axial Spondyloarthritis. Man, that's a mouthful to even just say, let alone think about. So what is Axial spondyloarthritis? Well, it is a type of inflammatory arthritis that causes lower back pain among other symptoms, you know, affecting not only your lower back but your si joints, hip joints, knees, spine. So there are two main types. There's Non-Radiographic Axial Spondylitis and then there's Ankylosing Spondylitis. Most people are going to be familiar with the term Ankylosing Spondylitis and hearing these other terms, put in there can be new for a lot of people. So we do know that Axial Spondyloarthritis can be debilitating and progressive, you know, so you always want to make sure you're seeing a rheumatologist as soon as you think that there's any type of issue you might be dealing with. Talk with your family doctor, if they can get you a referral to a rheumatologist to make sure that you're progressing on the right treatment path. 

Just in America, around five and a half million Americans have Axial Spondyloarthritis. You know, again, it's an inflammatory form of arthritis and it's associated with chronic back pain. In my case when I got it, it was really chronic hip pain. It was the si joints. When it came at me it hit my si joints like a freight train and that was where the bulk of my pain was for the first number of years. It a little bit my lower back but it it never came on as strong as it did in my hips. That was where I've always had the biggest issues; Axial Spondyloarthritis is really an umbrella term for the types of inflammatory arthritis that affects the spine and the sacroiliac joints that connect the lower spine to the pelvis. And these result in a lot of pain again, like I said, in your back hips, and buttocks. As I mentioned, there are two types of Axial Spondyloarthritis. There's the non-radiographic, and there's ankylosing spondylitis, we might say, well, what is non-radiographic mean? Well, that means that the damage to the joints is just not visible on an x-ray yet, so you could go in you can have the x-rays done you can be in a ton of pain and have high inflammation levels, but no damage. A number of years ago, rheumatologists might have kind of said, well, I'm not sure what's wrong with you. But now as its evolved, they're becoming much better at diagnosing everybody that is affected by this in a much quicker process. Not as quick as it needs to be but quicker. So when changes to the vertebrae, you know, the bones of the spine or the si joints don't show any change on an x-ray. That's known as non-radiographic axial spondylitis. Once the joints are clearly affected on an x-ray and that's visible, then the person can be instead diagnosed as having Ankylosing Spondylitis. Up to 6% of people with chronic back pain will ultimately receive a diagnosis of Axial Spondyloarthritis. But the disease often takes as long as 10 years to be diagnosed. That means 10 years of the inflammation doing damage before many get a proper diagnosis, and it can be longer. I see many people comment in different Facebook forums that they've had pain for 10,15, 20, and 30 years and kind of put it off. And that's really just years and years, decade’s worth of damage that can't be undone. It's really a shame, as we know these delays in diagnosis can have a huge impact on your quality of life and lead to disability Missed time at work, increased health care costs, and even worse, as the disease is progressive, you may become more debilitated over time. Left untreated, you know your vertebrae in your back can fuse, Axial Spondyloarthritis, one disease with two stages. 

So our understanding of Axial Spondyloarthritis has really evolved in the last few years. “We now understand that Non-Radiographic Axial Spondyloarthritis and Ankylosing Spondylitis are both the same spectrum of diseases”, explains Hilary Norton, a rheumatologist in a private practice in Santa Fe, New Mexico who herself has AS, “the symptoms are the same. The response to treatment is the same, but we don't yet know who will progress to radiographic disease.” Indeed, non-radiographic axial spondylitis may occur. Early disease or may be a separate entity that never progresses to AS. “Every AS patient at some point was non-radiographic not everyone will progress to AS, particularly women”, says Dr. Norton. So different studies have found that rates of progression from non-radiographic axial spondyloarthritis, to AS of 5% to 30%, over two to 30 years reports Dr. Dodaro, a professor of medicine in the medical directory of Rheumatology clinics for Oregon Health and Science University in Portland. So who gets axial spondyloarthritis? Well, we know that age when it generally develops in people is young, generally starts in people during their teens or in their early 20s. In my case, it started somewhere around 9 or 10 and I was diagnosed by 14, which I thought was really young. But as I get to interact with lots more people on this, I find that there was many, many of us that were diagnosed at a very young age. By early 30s you have sore back, and you might start to look into it, but it generally starts well before a person reaches age 40. Again, there's a whole spectrum people that are diagnosed later than that, but I've been dealing with it for years. So it generally starts much before that. 

Sex – Well genderwise, axial spondyloarthritis is now considered equal opportunity offender and this is fantastic. For many, many years, we used to think of AS as a man's disease, and that left women with the non-radiographic, if that's what they were suffering from kind of left out there to not ever get treatment, not ever be properly diagnosed and just left to deal with the pain. When I was diagnosed in 1984, I was told is primarily a men's disease, women get it, but it's usually not as bad. Well, that's really done a 180degree and we're looking at men and women on par. So that is fantastic for the women that listen to the show, and for just women in general that they can get the proper treatment plans. So what are some signs and symptoms of axial spondyloarthritis? Well, the primary symptoms are inflammation in your back, back pain that can occur because of chronic inflammation in the joints of your spine. Now this is in contrast to mechanical back pain which occurs because you know muscle strain or disk problems, issues like that inflammatory back pain and axial spondyloarthritis has some unique characteristics that when taken together can help doctors diagnose it. These include:

·      Back pain that starts before age 45.

·      Lasts for at least three months can be on and off but that's what they look for as a minimum of three months.

·      Feels worse at night, generally in the second half of the night, improves with activity and exercise and worsens with rest. 

·      Responds well to non-steroidal anti-inflammatory drugs (NSAIDs), like aspirin, ibuprofen.

·      Often occurs with alternating buttock pain.

So your back can hurt, your butt can hurt, your back, your butt can hurt occurs with limited spinal flexibility, which can become so severe that people cannot do day-to-day activities. Just bending down and putting on socks is impossible, says Dr. Deodhar, and that's where I'm at me picking up something off the floor is very, very difficult and I, due to multiple hip replacements, I really can't put my socks on anymore. So I invested in a sock puller man, that thing is fantastic. Put the sock on that, pull it up on my foot, and I'm good to go. Other symptoms associated with actual spondyloarthritis may include: fatigue, inflammation of the eye, which is uveitis and see a link in the show notes to episode number 48, where I talked with an ophthalmologist about that specific condition, psoriasis, inflammatory bowel disease, arthritis in one or more peripheral joints, like your hands, your feet, your arms or your legs. And then at the situs, which is inflammation in places where ligaments and tendons connect with bones such as the Achilles heel and your foot. The impact on quality of life can be tremendous when any just one of these happens, but when you put them all together, it can really severely limit what you can do. The one thing we know for a lot of us is this is largely an invisible disease that can rage through us at nighttime and a loss of sleep. I see many, many people talk about, I need a good mattress, I can't sleep. I'm up all night because of the pain. What do I do? How do I manage this? It really can affect people dramatically when you have a night or two of lost sleep, how your quality of life can deteriorate very quickly. As Dr. Norton says, the impact on quality of life can be tremendous. This is largely an invisible disease. You know, as we talked doing absenteeism from work is a big problem when you start to lose sleep, causes of axial spondyloarthritis. Well, this is what we don't really know yet. Doctors and researchers still have a lot to learn about what causes axial spondyloarthritis. It's a combination autoimmune and inflammatory disease, meaning that innate and adaptive immune systems the body's first and second line of defense are both involved, explains Dr. Norton. Well, some risk factors can't be changed, others can. 

Genes and Family History - there is a genetic disposition to developing axial spondyloarthritis the risk of developing it increases if a first degree relative parent, sibling or child has it. The HLA-B27, which is a genetic marker is thought to be present in more than 90% of Caucasians with the disease. However, HLA-B27 is less prevalent among African Americans with axial spondyloarthritis. So that's something that they're looking into further as well. And again, if you go to the show notes, you can see links to this article, as well as number of supporting articles that talk about these different issues. 

Environment - Factors in your environment and other diseases may increase your risk of developing ankylosing spondylitis, but these aren't very well understood. They include exposure to certain infections, toxins and pollutants, injury to affected joints, changes in the bacteria in your colon, and bowel inflammation. More research is needed to understand how such factors influence the onset and severity of AS.

Lifestyle - While some risk factors can't be changed, others can. Not smoking is important. Since this can worsen the severity of the disease says Dr. Norton. Healthy lifestyle choices such as exercising and eating a nutritious diet are also important. 

You might be able to hear that little wolfing going on right now that's Bandit having a nightmare. 

So back to the show. Eating a nutritious diet is also important while living with axial spondyloarthritis. We know that exercise is particularly critical because it can help to relieve symptoms of inflammatory back pain and help people with axial spondyloarthritis maintain a flexible spine and joint. And that's really where like I said, where I'm at. I can't exercise. I've had four hip replacements. So bending over picking up stuff off the floor. Now with my lower back being fused is virtually impossible. And that's one of the things that man it'll be trained to do is help me pick up things off the floor that I just can no longer do. So it's very lucky that I have access to this and I Know that it's gonna take a lot of work but it's it's gonna be well worth it I think when I'm done. 

So how is axial spondyloarthritis diagnosed? Well, there's no standardized way it's diagnosed there's no standardized formula to say if you have this, this and this, it's a guarantee you got this is diagnosed through a combination of patient history, physical examination blood tests, the blood tests are for both the HLA-B27 and for markers of inflammation, such as that like a C reactive protein, and then imaging tests such as x-ray and MRI, since it can take up to 10 years for x-rays to show damage from inflammation. Clinicians tend to rely on MRI to help diagnose axial spondyloarthritis earlier. It's very important if you're offered an MRI, don't skip it, get in there and get it done so that you can make sure to get the earliest possible diagnosis possible and get the right medications. 

Back Pain is so common in the general population, diagnosis of axial spindyloarthritis may come down to having accompanying symptoms, like eye inflammation, skin problems, like psoriasis, or inflammatory bowel disease, because everybody says, Oh, my back hurts. So you're going to need more than that to help the doctor along the path that you need to be directed down. Or maybe as your back pain gets better, you can exercise and that helps to alleviate some of the symptoms in the short term, long term as you still need a proper diagnosis. So you know, as as Dr. Deodhar says, If you exercise and your back gets better with rest, all these things can make you think Hmm, this back pain is different physicians need to keep their antenna up. 

The importance of early detection of of axial spandyloarthritis. Early diagnosis is important. You know, it can help prevent unnecessary procedures and find a treatment that works for them to help minimize symptoms and maintain function says Dr. Norton. The early development of symptoms is one of the reasons for the delay in the diagnosing the disease, generally people who develop back pain in their 20s aren't aware that it could be from a chronic auto inflammatory disease says Dr. Norton. And we see that all the time as people say, I felt all this issues in my 20s, but I'm not my 40s and I'm finally getting diagnosed. When they do seek care, they may go to a chiropractor, a sports medicine physician, or even their primary care physician and may not get seen by the rheumatologist for quite some time. And since inflammatory back pain differs from mechanical back pain, that type that's caused by overdoing in the gym lifting weights or you know, picking up something heavy, treating it the same way will often with limited rest and physical therapy doesn't help and can result in permanent damage. The ongoing inflammation from your immune system will continue to cause pain and over time, possibly cause the vertebrae in your spine to fuse together. That's how I am, I wish I could send everyone a picture of me, a side picture of me standing just to see the probably 20 degree level that I'm hunched over from the spine fusing, I always look down at the ground. I really can't look up when I walk. So it's not what you want. I encourage you to make sure you really get seen, get these MRIs done, treat this as the seriousness it is, well, it's easy to think that your back pain is due to a muscle sprain or herniated disk. It's important to see that rheumatologist like I said, if your back pain has inflammatory characteristics, the good news overall on this if you want to look at the bright side of possibly having axial spondyloarthritis is all the ways to be diagnosed. Now, for women, you're being taken much more serious for men and women. The medication options now are so much broader. You can get in there with a good biologic that can really slow down or in some cases, almost stop the progression of the inflammation as long as you're on it, which gives your body time to adjust and control itself and not have to fight off all that inflammation. That you've been dealing with and again, not long term have to deal with the damage that it can do to your joints. So I encourage everybody again, to make sure you get to the doctors. Make sure you consistently get to the doctors, get your bloodwork done MRIs, x-rays, everything that they're asking you to do, so that you can stay on a proper treatment plan and make sure to kick as is behind. So again, thank you for listening. Please go out to spondee podcast comm sign up for the newsletter and make sure to if you would leave me a review on pod chaser out appreciate it until next week, everybody have a fantastic time. Take care.

Canadian Spondylitis Association - https://www.spondylitis.ca/spondyloarthritis/spondyloarthritis-diseases/axial-spondyloarthritis-axspa/

Creaky Joints article - https://creakyjoints.org/education/what-is-axial-spondyloarthritis/

www.spondypodcast.com 

Joy Organics affiliate link at bottom of page - c0e786dd-fd64-4e0c-bfa4-a4f3b58d2230Sun, 17 May 2020 09:00:00 -040019:07falsefull5050Jes Hojsan - Spondy, Young Mother, Women's IssuesJayson Sacco,

Welcome to this episode of the Ankylosing Spondylitis podcast. Well, as many of you know, I started the show to just kind of be cathartic for myself and get some of my feelings about Ankylosing Spondylitis and how it affected me off of my chest, so to speak. But as I did it in the show gained popularity, and more and more listeners came about, I started noticing that there's one area I can't address. And that's what's it like to be a woman with Ankylosing Spondylitis? This is where I just ran into a fantastic young lady named Jes Hojsan. And I have her on the line. And we're going to talk about being a woman with Ankylosing Spondylitis. And, importantly, being a young mother with Ankylosing Spondylitis. Jes, how are you doing today?

Jes Hojsan,

I'm doing really good. Thank you, Jayson, so much for having me on the podcast. Yesterday was my Cosentyx day. So I'm definitely feeling better today than than I have been the past few days. 

Jayson Sacco,

Great. So we talked about that. I'm on Cosentyx as well. And you had to take a little bit of a break for some issues. And so you took about a month off from Cosentyx and now our back building loading dose up so I hope you get some good relief from it like you were experiencing before you you took that little break.

Jes Hojsan,

Yeah, I'm really hoping that the higher dose and the reloading of the doses is really going to put me back to where I was because I was really starting to enjoy life again. It was really great. How old are you? I am 30 years old. I was 30 in January. 

Jayson Sacco,

When were you diagnosed? 

Jes Hojsan,

So I was diagnosed officially via MRI last October. I had really been struggling for a couple of years with this really debilitating soreness all over, but I can go back so far as being you know, 11-12 years old and having really bad back pain at the time when I had seen my daughter I was diagnosed with a really minor case of scoliosis. I was also a figure skater, which is a really high impact and really, you know, physical sport. So I, you know, my parents just assumed that you know that the mix of those two is what was causing me pain and I ended up quitting figure skating around 18. And, you know, my back bothered me, but it was so normal to be in pain, and it wasn't ever debilitating at that point that I just lived with it. It wasn't until three years ago when I had my son. He was a newborn and I really started to feel you know, this pain all over, I could hardly get down the stairs, some mornings. It was difficult to to just get out of bed and carry him down the stairs, he usually would have to take you know, good 20 minutes or so to loosen myself up and to get down the stairs. And I had gone to my family doctor and I had asked them about it and I was really just told that this is new mom pain I had had a C-section You know, you're getting less sleep, you're carrying a baby, this is all normal. So I, you know, there's nothing more I could do. I just figured that's what they're telling me. This is the truth. And I ended up nine months later; I became pregnant again with my second pregnancy. And, you know, throughout the pregnancy, I definitely had a lot of back and nerve pain, but that also was common in pregnancy. So nobody ever suspected anything more. My daughter was born. And, you know, as soon as she was delivered, I started getting that stiffness, really bad pain in my feet. My back was so achy, I, you know, was having a really hard time sitting down. And I finally said, I need to do something about this. And it did take me some time, took me switching family doctors getting someone who heard me and listened to me, and finally really pushed to see a rheumatologist, which I wasn't taken seriously there either. They told me there was no issue. They saw my spine x-ray, they said that there were some abnormalities, but they didn't feel...]]>Jayson Sacco,

Welcome to this episode of the Ankylosing Spondylitis podcast. Well, as many of you know, I started the show to just kind of be cathartic for myself and get some of my feelings about Ankylosing Spondylitis and how it affected me off of my chest, so to speak. But as I did it in the show gained popularity, and more and more listeners came about, I started noticing that there's one area I can't address. And that's what's it like to be a woman with Ankylosing Spondylitis? This is where I just ran into a fantastic young lady named Jes Hojsan. And I have her on the line. And we're going to talk about being a woman with Ankylosing Spondylitis. And, importantly, being a young mother with Ankylosing Spondylitis. Jes, how are you doing today?

Jes Hojsan,

I'm doing really good. Thank you, Jayson, so much for having me on the podcast. Yesterday was my Cosentyx day. So I'm definitely feeling better today than than I have been the past few days. 

Jayson Sacco,

Great. So we talked about that. I'm on Cosentyx as well. And you had to take a little bit of a break for some issues. And so you took about a month off from Cosentyx and now our back building loading dose up so I hope you get some good relief from it like you were experiencing before you you took that little break.

Jes Hojsan,

Yeah, I'm really hoping that the higher dose and the reloading of the doses is really going to put me back to where I was because I was really starting to enjoy life again. It was really great. How old are you? I am 30 years old. I was 30 in January. 

Jayson Sacco,

When were you diagnosed? 

Jes Hojsan,

So I was diagnosed officially via MRI last October. I had really been struggling for a couple of years with this really debilitating soreness all over, but I can go back so far as being you know, 11-12 years old and having really bad back pain at the time when I had seen my daughter I was diagnosed with a really minor case of scoliosis. I was also a figure skater, which is a really high impact and really, you know, physical sport. So I, you know, my parents just assumed that you know that the mix of those two is what was causing me pain and I ended up quitting figure skating around 18. And, you know, my back bothered me, but it was so normal to be in pain, and it wasn't ever debilitating at that point that I just lived with it. It wasn't until three years ago when I had my son. He was a newborn and I really started to feel you know, this pain all over, I could hardly get down the stairs, some mornings. It was difficult to to just get out of bed and carry him down the stairs, he usually would have to take you know, good 20 minutes or so to loosen myself up and to get down the stairs. And I had gone to my family doctor and I had asked them about it and I was really just told that this is new mom pain I had had a C-section You know, you're getting less sleep, you're carrying a baby, this is all normal. So I, you know, there's nothing more I could do. I just figured that's what they're telling me. This is the truth. And I ended up nine months later; I became pregnant again with my second pregnancy. And, you know, throughout the pregnancy, I definitely had a lot of back and nerve pain, but that also was common in pregnancy. So nobody ever suspected anything more. My daughter was born. And, you know, as soon as she was delivered, I started getting that stiffness, really bad pain in my feet. My back was so achy, I, you know, was having a really hard time sitting down. And I finally said, I need to do something about this. And it did take me some time, took me switching family doctors getting someone who heard me and listened to me, and finally really pushed to see a rheumatologist, which I wasn't taken seriously there either. They told me there was no issue. They saw my spine x-ray, they said that there were some abnormalities, but they didn't feel it was rheumatology related. So I needed to, you know, go somewhere else. And that's when I really pushed for an MRI, which did diagnose me with AS.

Jayson Sacco,

So, it really is the case for you and that we hear a lot about women taking longer to diagnose. And you really are probably anywhere from 15 to 18 years that you were dealing with the onset of Ankylosing Spondylitis before somebody would even consider looking at you.