Hi to all! I'm new to KickAS (just registered Friday) but not new to AS. I've peeked at many of your posts trying to learn what I can, but I still have some questions. Oh, I bought Carol Sinclair's book too - great reading and am hopeful it will turn my life around.
Michelle, I see you have a lot of the same symptoms as me - I've never known another person with thoracic outlet syndrome. Did you have surgery for it too?
In my teens I had general overall leg aches and, as I approached my 22nd birthday, my heel bones became inflamed and I developed bursal sacs between the heel and tendon. I had surgery for that. Was not yet diagnoised with AS at that time, and now years later I know the surgery was not necessary.
Then came surgery for thoracic outlet syndrome-both sides. By then I also had mild psoriasis and unbearable knee pain with occasional hip pain. I spent the next several years on crutches, off and on.
About 10 years ago, my eye doctor was treating me for Episcleritis, and as he is a well-read man, suggested that I probably had AS. He referred me to a rheumatologist specialising in AS who did all the the tests and xrays. He found that I am HLAB27 positive with the classic changes in the sacroiliac joint. For the first time in my life nobody was telling me that my pain was "all in my mind" or that I was "depressed". I can't begin to tell you what a relief it was to finally know what was causing all my various pains and bone problems -- and to know that I wasn't a hypochoidriac!
I'm almost finished reading Carol Sinclair's book and was wondering if anyone with symptoms similar to me has had good success in staying psoriasis-symptom-free with this low/no starch diet.
I'm currently taking Methotrexate, Folic Acid and Mobic (Meloxicam). I would love to stop taking Methotrexate & Mobic but am afraid to because I don't want to have Psoriasis and bad pain again. After only 2 doses of Methotrexate the psoriasis completely cleared up. My level of pain varies from month to month and it also varies in location. Do you think I can be symptom free on this diet?
Also, Methotrexate is supposed to slow down progression of AS so that's another concern if I stop taking it. On the other hand, I am afraid to take this drug for the rest of my life because of possible bad side effects.
I sort of have a plan and would like to know if this sounds about right: 1) taper off Methotrexate over a period of 6 months or so. 2)at the same time, go starch-free on the diet.
I don't know if this is the right way to do it. My theumatologist is not on board with the diet so I am on my own.
Sorry this post is so long - just wanted to give you a little background so you'd understand what I'm after. I'll keep it short next time.
It's so good to know there's somebody out there that 'gets' me and how I feel. Many thanks to those who contribute all the good advice and kind words.
Any thoughts would be welcome.
Warm aloha to all -