Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Stages

New to the site. Are there groups based on where you are in the AS lifecycle? I am 55, 30+ years with AS, fused basically from top to bottom. Wish I had this resource in my 20's. Mobility is my issue now, not pain so much. Fortunately I can still work, golf, drive but painting ceilings and top shelfs are a problem.

Welcome Dave!

Not really different stage/groups, but if you post a mobility question or comment in the #1 support group then everyone can chime in. I hear ya about the painting of top shelves!

Fused top to bottom eh? Just spine and hips or elsewhere. I have to ask around about this because there is hardly a bendy part on me not affected so I really could be a head to toe fusion one day.....even my jaw. I'm an odd duck who has only had occasional pain/stiffness in my back. Hips and neck are stiffening, but my wrists appear to be fused solid. Feet are likely next, ribs and neck close behind. Weird, huh!

Take Care,
Donette

I Dave, I am 71 and so far the only thing to fuse is my right wrist/base of thumb.My SI seems to be trying, as it's been causing a lot of trouble. I started out on my journey when I was 19 with a sore wrist. The AS flares up every once in a while and then goes dormant for a few years. It's been quite active for the last two years. I wish it would take another break.

We all seem to pop into the different groups, depending on where we are on our AS journey and what gets our interest. Take your time and read through the various topics. Post when you have something to add or to ask a question. You will find some really nice and helpful people here on KA.

My fusion is spine only, the rest of my joints are reasonably good, no more aching than most of the people my age. Kind of like having a steel rod for a spine but the pain is not bad. I have heard and read of the jaw issue and fortunately have never experienced that. Interesting to have this resource because I'm the only person I know with AS and since its fairly obvious I get a lot of questions. Just becomes part of you.

hi dave,

good to meet you

i started having problems at age 35. i'm 48 now.

no evidence of fusing, so dx'ed with undiff spondy.

just lots of pain and dysfunction when i flare, and then dealing with the aftermath after a flare.

when the doctors ask me which joints are most problematic, i tell them, "my elbows are pretty good." that about sums it up.

took awhile, but now have a bunch of good doctors. so even though i still flare and we're working on that, i'm much better in between flares.

Hi Dave, welcome to kickas. We are one big happy family. I am also 55 and have lived inspite of this desease, over 40 of those years. I am partially fused and big problems with all periferal joints, many tendons are have already torn or in process of tearing. Had to quit working 5 years ago, but just won't give up and try to keep joy in my life everyday regardless.
Cindy

Hi Dave, I'm so glad to hear that although totally fused, you are still able to do some things that you enjoy, that's important!!! I've had a high disease activity level for many years now(decades) and am almost totally fused too...I started Enbrel during the clinical trials and I'm on it and MTX but my disease was still marching onward, soI started the no starch diet 4 months ago and I'm having great results with it...welcome to KA and I wish you the very best of luck...