Ankylosing Spondylitis
192 Members
This online group serves the members of our arthritis community who are living with Ankylosing Spondylitis and related conditions from across the country. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.
Live Yes! Connect Groups offer connections, education, and empowerment. Adults living with arthritis from across the country come together online for professional- and volunteer-led sessions on topics, as well as fun group activities.
We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills, and learn how to not just survive life with arthritis but to thrive.
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Facilitators [1]
Members [192]
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I am looking to share experience with people with reactive arthritis. This came on for me in the last few months and I am taking oral methyllprednisollne after a previous steroid treatment. I would like to have perspective from anyone willing to give it.
Many years suffering and finally got the right diagnostic .
This group's posts timeline seems a bit confusing and many do not get replies.
Does anyone know if there is a modern group chat application with people with AS? (telegram, discord, whatsapp, etc )
Hi, I was recently diagnosed with AS. I've been managing fine but it recently has started effecting my hands which has put a strain both on my work and personal life. Does anyone have any suggestions for things that may help?
Hi. Is this an active group?
Hi,
I was just diagnosed with Ankylosing Spondylitis in May 2024 although I suspect I have it for decades. Has anyone else had this kind of experience? It escalated when about when COVID hit. The doctor said I had to stop taking NSAIDS. Then my symptoms escalated dramatically.
Claire S
Why stop NSAIDS?
Hi all,
I'm new to this group and am hopeful for some support and knowledge from others with AS. I am currently going through several trials for treatment planning currently but nothing seems to be helping my pelvic and leg pain/weakness. I have tried RFA, several physical therapies (to include pelvic floor), and various medications (using only one medication for pain management currently). My hope is to not have to get on a new medication so early in my life (I'm mid-20s). Has anyone else had intense leg and pelvic pain and weakness? And what treatment options or testing did you do to try to find other treatment options rather than new medication? I appreciate all insight and support!
Christina
Yes, what actually helps met is icing my low back and mindful meditation techniques. It doesn't make sense but I think the pressure from the inflammation in my lower spinal nerves presses causing referred pain. So I think it reduces the swelling calming down the nerve. Good luck!
Hello! I was just diagnosed with a couple of weeks ago and don't know anyone that has it. What helped you accept your diagnosis?
My name is Andre, you love everyone in the group, I have ankylosing spondylitis - is there a cure with stem cells?
Good morning,
I am newly diagnosed with AS after a year of testing and progression of the disease. If anyone has any words of wisdom to share please do. I am still working on accepting and adjusting.
Can we communicate thru text or calls
Me too! It's hard. How do we do it?
I too have AS. Diagnosed March 2024. Taking hydroxychloroquine and methotrexate. Not helping a lot yet. I keep hoping eventually for the right meds. I flare 5 out of 7 days lately with pain different places and horrible flu like symptoms. I hope to share with others that understand and would like to know if remission is likely.
Actually for me I am just happy to have an explanation. I had to stop taking NSAIDS about 4 years ago so I ended up having to take opiates without knowing what was wrong. I slept a lot and it messed up my thinking. It was awful. Now I finally have a Rheumatologist because my pain doctor and I finally figured out it had to be more than structural problems in my spine. Now I have another type of meds specifically for A.S. I am much improved.
Thank you Jed. Next step we are changing my medication this month and I'm trying to motivate myself to get active!
My name is Andre, you love everyone in the group, I have ankylosing spondylitis - is there a cure with stem cells?
Lauren,
Welcome to the family! We deal with a lot, but our community is amazing!
Don't let the diagnosis get you down. You got diagnosed at a great time with all the possible treatment options we have to help us stay mobile and slow disease progression.
There are so many people with AS who live very active lives. It affects everyone differently, so trust me, AS is not the end lof the road.
Feel free to reach out any time you have a question or need someone to talk to.
We are here to help!
Welcome to the family!
Jed (Group Facilitator)