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  • Let's discuss ankylosing spondylitis!
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Living with ankylosing spondylitis

Let's discuss ankylosing spondylitis!

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avatar mark48

mark48

12/19/2018 at 4:11 AM

avatar mark48

mark48

Last activity on 05/13/2022 at 5:01 PM

Joined in 2018


17 comments posted | 14 in the Living with ankylosing spondylitis group


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 I thought we could all gather here to discuss AS. I have read a lot testimonials from other members in the testimonial section and it feels good to realize that I am not alone in AS and not alone in experiencing and struggling with a chronic condition, like AS. 

I know there are more focused topics here on AS, but I would like to open a more general discussion with you all so that we can meet each other and better get to know each other.

I would be happy to discuss my condition with AS with you.

I hope to hear from any of you soon!

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avatar JTom4cats

JTom4cats

03/01/2019 at 5:27 PM

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avatar JTom4cats

JTom4cats

Last activity on 07/23/2025 at 11:22 PM

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20 comments posted | 17 in the Living with ankylosing spondylitis group

1 of their responses was helpful to members


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@AS1218 AS1218, search for an anti-gravity chair.  They are great.  It takes the pressure off your spine.

See the signature

Tom W - Food and Coffee


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-01 17:27:16

avatar AS1218

AS1218

03/02/2019 at 1:36 AM

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avatar AS1218

AS1218

Last activity on 02/05/2024 at 1:39 AM

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56 comments posted | 31 in the Living with ankylosing spondylitis group

3 of their responses were helpful to members


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@JTom4cats Do you have one you recommend? 

Are they also suitable for those without AS?


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-02 01:36:44

avatar AS1218

AS1218

03/02/2019 at 1:38 AM

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avatar AS1218

AS1218

Last activity on 02/05/2024 at 1:39 AM

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56 comments posted | 31 in the Living with ankylosing spondylitis group

3 of their responses were helpful to members


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@MeganF what dosage of tumeric do you take? How many times a day? I have tried it and I felt I never felt any benefits? Do you think the apple cider vinegar really helps?

 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-02 01:38:30
avatar exit

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03/02/2019 at 3:02 AM

@AS1218 i cook with a lot of tumeric and take 1  1000mg/day. I drink 1 tablespoon of apple cider vinegar in water 1 time/day. I will take more than this if i feel worse. Seems to help! my acupuncturist told me to drink baking soda in water to help with inflammation. seems to help as well.  Its so tough with AS though i feel since its hard to pinpoint what is actually helping. Maybe its a combination of it all? if i didnt do these things would i feel even worse??

what i do know NOT to do is go to a chiropractor. before i was diagnosed, i thought my back hurt and just needed adjustments. I would be on table crying since it hurt so bad. After getting diagnosed my doctor said that is the worst thing you can do for it. Oops!!!  Also massages can make me feel bad afterwards as well. I know diet high in sugar isnt good for inflammation, stinks cause i love sweets!!  anyone else know what NOT to do that makes AS worse? 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-02 03:02:01

avatar JTom4cats

JTom4cats

03/02/2019 at 5:26 PM

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avatar JTom4cats

JTom4cats

Last activity on 07/23/2025 at 11:22 PM

Joined in 2019


20 comments posted | 17 in the Living with ankylosing spondylitis group

1 of their responses was helpful to members


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@AS1218 I bought a Perfect Chair 10-15 years ago.  It is still going strong.  Very comfortable.

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Tom W - Food and Coffee


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-02 17:26:13
avatar exit

Unregistered member

03/26/2019 at 2:06 PM

@MeganF  I tried CBD but it did nothing for my pain. I’m curious, how does the acupuncture help? Cymbalta just made me more depressed. One of my dr’s tried me on Lyrica and Gabapentin for pain but they didn’t work for me but might help someone else. They are called DMARDS which is an anti inflammatory medicine one step above ibuprofen type meds ( just in case anyone isn’t familiar with them). I also use biofreeze on my hot spots. That helps for a few hours. You can get it at any drugstore. 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-26 14:06:50
avatar exit

Unregistered member

03/26/2019 at 2:12 PM

@JTom4cats thank you for sharing that. I was diagnosed a year ago. It explained what has been going on with me for a few years now. I can tell it’s progressing and hearing you say that you too can’t do like you used to gives me a sigh of relief. I’ve been feeling terribly guilty about my inability to do things like I used. It makes me sad and depressed. I’m struggling with acceptance about all of this. 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-26 14:12:41
avatar exit

Unregistered member

03/26/2019 at 2:21 PM

@MeganF I’ve been going to a chiropractor for years! That’s good to know because maybe that has a contributing factor to my pain. 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-26 14:21:23
avatar exit

Unregistered member

03/27/2019 at 3:48 PM

@AS1218 I was treated with both Lyrica and Gabapentine for nerve pain. It didn’t help me at the time because I hadn’t been diagnosed with my AS yet.  Now that I’m taking Cosentyx it has reduced quite a bit. Maybe one of those meds might work for you. Just a thought 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-03-27 15:48:09

avatar katw78

katw78

04/08/2019 at 9:56 PM

avatar katw78

katw78

Last activity on 08/18/2024 at 1:58 AM

Joined in 2018


2 comments posted | 2 in the Living with ankylosing spondylitis group


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I was diagnosed in 2016 after years of pain and living with symptoms. I also fight depression and some days are def easier than others. Its good to know I am not alone but its also heartbreaking because I wouldn't wish this disease on anyone. Hugs to you all!

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Kat


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-04-08 21:56:30
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