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#511648 - 07/06/15 08:20 AM Re: Would love some input! [Re: Songstress06]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21326
Loc: Upstate NY
Originally Posted By Songstress06


Sue, they have mentioned EDS to me, too. I have +- genetic markers. They have also thought I may have some sort of autoimmunity that attacks my ligaments, leaving me with joint pain that may be slightly different from AS. It's a journey figuring this thing out...

see my long response that i just made today (july 6th on "enthesitis vs tendonitis")
http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=511618#Post511618


I do find that osteopathic/ PT adjustments make me feel better. It just doesn't last. Does anyone else experience that?

yes!


Edited by Sue22 (07/06/15 08:21 AM)
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#511704 - 07/13/15 08:03 AM Re: Would love some input! [Re: Songstress06]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 18059
Loc: UK
Hi,

Your case sounds similar to mine. I responded to a restricted (wheat and cow dairy specifically) diet, but never when no starch with it. The diet does not work for everyone any more than any other treatment works for everyone (they don't). In three months, you should have seen some positive sign, no matter how small.

As for being afraid to try biologics because you're a singer and don't want to get sick, I've been on biologics for ten years now and have never yet missed a performance due to being too sick because of biologics. The biologics have, indeed, helped me stay on stage because I have more energy due to my body not constantly attacking itself. I am an actor, singer and director, just so you know. The biologics don't work for everyone and some people do get too many infections while on them, but don't use fear of being too sick to perform as an excuse not to try them. In my case, they've made it easier. You won't know until you try what it will do in your case.

Warm hugs,
_________________________
Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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