Logo Carenity
Logo Carenity
Join now! Log in
flag us
flag fr flag en flag es flag de flag it
Home

Forums

Latest discussions
General discussions
See all - Forum index from A to Z

Conditions

Fact sheets
See all - Disease index from A to Z

Magazine

Our featured pieces
News
Testimonials
Nutrition
Advice
Procedures & paperwork

Medications

Medications fact sheet
See all - Medication index from A to Z

Surveys

Ongoing surveys
The results of the surveys

Join now! Log in
  • Forums

    • Latest discussions
    • General discussions
    • See all - Forum index from A to Z
  • Conditions

    • Fact sheets
    • See all - Disease index from A to Z
  • Magazine

    • Our featured pieces
    • News
    • Testimonials
    • Nutrition
    • Advice
    • Procedures & paperwork
  • Medications

    • Medications fact sheet
    • See all - Medication index from A to Z
  • Surveys

    • Ongoing surveys
    • The results of the surveys
  • Home
  • Forums
  • General forums
  • Living with ankylosing spondylitis
  • Let's discuss ankylosing spondylitis!
 Back
Living with ankylosing spondylitis

Let's discuss ankylosing spondylitis!

  •  586 views
  •  16 times supported
  •  40 comments

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


Rewards

  • Contributor

  • Messenger

  • Explorer


 View profileView  Add a friendAdd  Write

 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!

Follow

Other groups...

Carenity News
Feedback for Carenity
Fun and games
General Topics
Good to know
Health and Medical News
How to use Carenity
Let's talk about COVID-19
Life beyond illness
The Holiday Season
Youth patients with chronic conditions

Give your opinion

Survey

What do you think about the Carenity Forum and community?

Survey

Help shape the future of Carenity!

All comments

Go to the last comment

avatar AS1218

AS1218

12/28/2018 at 1:46 AM

Good advisor

avatar AS1218

AS1218

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

Joined in 2018


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

3 of their responses were helpful to members


Rewards

  • Good Advisor

  • Contributor

  • Messenger

  • Explorer


 View profileView  Add a friendAdd  Write

Great idea! Anyone else here struggling with losing muscle so quickly? I know it will go away because of my inactivity, but why am I becoming so weak and no muscle so quickly? what can I do?
 
 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2018-12-28 01:46:00
avatar exit

Unregistered member

01/02/2019 at 1:02 AM

I am struggling with this also. It is happening so fast.


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

avatar AS1218

AS1218

01/18/2019 at 2:12 AM

Good advisor

avatar AS1218

AS1218

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

Joined in 2018


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

3 of their responses were helpful to members


Rewards

  • Good Advisor

  • Contributor

  • Messenger

  • Explorer


 View profileView  Add a friendAdd  Write

Who here is suffering with nerve pains due to the detoration of our vertebrae and limited flexibility? Is everyone still able to sleep on back in bed? I still can seep in the bed most times, but it can cause me discomfort!


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-01-18 02:12:28

avatar Mbaulch

Mbaulch

01/21/2019 at 6:44 PM

avatar Mbaulch

Mbaulch

Last activity on 09/25/2021 at 10:11 PM

Joined in 2018


7 comments posted | 7 in the Living with ankylosing spondylitis group


Rewards

  • Contributor

  • Explorer


 View profileView  Add a friendAdd  Write

Maria, my wife is suffering with AS for about a year but probably undiagnosed for much longer.  She is weak from inactivity but can't do PT or any real exercise due to the level of pain. She is up til the wee hours most nights and can't sleep but sleeps a lot during the day.  Not a great life.


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-01-21 18:44:55

avatar JTom4cats

JTom4cats

01/28/2019 at 6:19 PM

Good advisor

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


Rewards

  • Good Advisor

  • Contributor

  • Explorer

  • Evaluator


 View profileView  Add a friendAdd  Write

If you can get on Enbrel, I would recommend it.  It relieves a lot of pain.  They do have a support card with reduces the cost to something manageable.  There are downsides, but it does make life much more enjoyable.

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 2019-01-28 18:19:50
avatar exit

Unregistered member

02/03/2019 at 5:31 AM

I originally tried Humira for 9 months when I was initially diagnosed, and unfortunately it made me severely depressed and the chronic hand and joint pain I couldn’t stand. I switched to Cymzia which was a difficult transition. Mood swings, weight fluctuation, crazy dreams, and lack of sleep. But after about 8 weeks I haven’t felt any better than this. Would highly recommend anyone giving Cymzia a shot! Unfortunately, due to the diagnosis it has grown my depression and still continued nerve pain. So I am also on cymbalta. I have minimal to no nerve pain left with the help of cymbalta. 


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-02-03 05:31:22
avatar exit

Unregistered member

02/08/2019 at 12:11 AM

I have alot of pain! I have literally don't know what to do no more. My rhuematologist is great, and she was first person to actually listen. The depression is bad. And because my husband can't see the pain he sure does not understand!! I'm on Enbrel, a fear of needles, but at this point I will try anything. I too am on Cymbalta, but they had to start Wellbutrin to try to get me over the hump.

Diagnosis was just 5 months ago. Is it ever going to get better?


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-02-08 00:11:22

avatar Nbaby469

Nbaby469

02/10/2019 at 10:03 PM

avatar Nbaby469

Nbaby469

Last activity on 01/04/2020 at 9:54 PM

Joined in 2019


3 comments posted | 3 in the Living with ankylosing spondylitis group


Rewards

  • Explorer


 View profileView  Add a friendAdd  Write

I was told that I have spondylosis feb 5 2019 can any one tell me what going to happen to me thanks


Let's discuss ankylosing spondylitis! https://www.carenity.us/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-ankylosing-spondylitis-633 2019-02-10 22:03:00
avatar exit

Unregistered member

03/01/2019 at 3:38 AM

I was officially diagnosed with AS in May of 2018. My father also has it. I hate that he hurts as well but at least we have each other and understand what we both are going though.  It broke my heart reading all of your comments on here. There are days where I am in so much pain, nothing helps and all i want to do is go back to bed and cry. Its so depressing!! Ive been on Sulindac off and on now for months, i absolutely hate the side effects. I feel bloated and stomach is irritated @Joanna07‍ can you tell me a little more about Cymzia? Anyone on Cymbalta can explain any side effects or how it makes you feel? @mark48‍ how are you dealing with pain and depression? @LiciaBrady‍ I understand how youre feeling! My pain seems to be pretty constant but can also come in waves. some weeks i feel okay. Others are miserable. @Nbaby469‍ everything ive heard from specialists ive seen is that everyone is different and progresses differently with AS. 

Naturally i take Tumeric pills, apply cidar vinegar and other foods to help with inflammation. They do seem to help. I do acupuncture 1/mo and yoga 1/week. Stretching definitely helps, but some days its hard to even have energy or will to even want to do these things. Anyone trying CBD for pain? anyone trying other natural remedies? 


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 03:38:32

avatar JTom4cats

JTom4cats

03/01/2019 at 5:25 PM

Good advisor

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


Rewards

  • Good Advisor

  • Contributor

  • Explorer

  • Evaluator


 View profileView  Add a friendAdd  Write

@LiciaBrady LiciaBrady, it does get better after the initial shock wears off.  I was experiencing the impacts of AS for about 5-6 years before be officially diagnosed.  I was depressed for a couple of years thinking I was not going to get past 40.  I'm 64 now.  You will learn what you can and cannot do quickly.  Listen to your body and it will tell you your limitations.  Stretching is a good thing, and a great therapy.  If you were active before AS, it will be disheartening if you try to do some of those thing later.  For me it meant no more bicycling or swimming (face down). 

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 17:25:35
  • 1
  • 2
  • 3

Give your opinion

Survey

What do you think about the Carenity Forum and community?

Survey

Help shape the future of Carenity!

Articles to discover...

Meditation for chronic illness: A beginner’s guide to healing the mind and body

08/23/2025 | Advice

Meditation for chronic illness: A beginner’s guide to healing the mind and body

Do social media promote depression?

08/22/2025 | News

Do social media promote depression?

Is sitting too much putting your health at risk? Here’s what to do about it.

08/16/2025 | Advice

Is sitting too much putting your health at risk? Here’s what to do about it.

Eating your emotions: when food becomes a refuge

08/02/2025 | News

Eating your emotions: when food becomes a refuge

Cigarettes VS e-cigarettes: an update on the consumption and pitfalls to avoid

02/20/2019 | Advice

Cigarettes VS e-cigarettes: an update on the consumption and pitfalls to avoid

Telemedicine: Remote examinations and operations are here!

03/11/2019 | News

Telemedicine: Remote examinations and operations are here!

Chronic fatigue: patients' experiences and solutions

04/15/2019 | Advice

Chronic fatigue: patients' experiences and solutions

Love life in the face of illness: how to cope?

02/14/2019 | Advice

Love life in the face of illness: how to cope?

icon cross

Does this topic interest you?

Join the 500 000 patients registered on our platform, get information on your condition or on that of your family member, and discuss it with the community

Join now! Join now! Join now! Join now! Join now!

It’s free and confidential

Subscribe

You wish to be notified of new comments

 

You have been subscribed

Join now! Log in

About

  • About us
  • The Carenity team
  • The Science and Ethics Committee
  • Contributors
  • Carenity in the news
  • Certifications and awards
  • Data For Good
  • Our scientific publications
  • Discover our studies
  • Editorial policy
  • Code of conduct
  • Our commitments
  • Legal notice
  • Terms of use
  • Cookie management
  • Contact
  • Carenity for professionals

Quick access

  • Health magazine
  • Search a forum
  • Learn about a condition
  • See medication reviews
  • List of forums (A-Z)
  • List of condition info sheets (A-Z)
  • List of medication fact sheets (A-Z)
  • Language flag fr flag en flag de flag es flag it

The www.carenity.us website does not constitute or replace professional medical advice.