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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
7/26/09 6:58 P

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ROSABIANCA, Sorry it took me so long to find this post. AS has many forms and and causes many problems.
It is not always found with the genetic marker. Only 95% of patients with AS have the HLA-B27 marker. And only 8% of the people with the genetic marker will develop AS. It sounds like, by your description, that you have Undifferentiated Spondyloarthropathy, which is a form of AS. But I am not a doctor so this is just observation. Erin, or team leader can tell you more about this because it is the form that she has. Although AS usually affect the spine - it doesn't always.

As far as exercising with AS. It is really hard. It hurts a lot to exercise. In fact it made me hurt more then if I did not exercise. So I turned into a Couch Potato. My doctor kept telling me to exercise and it would hurt so much that I would resist and not continue. Finally, after I got to the point that I could not even move because I had no flexibility (think of Mr. Roboto) and I was in constant severe pain, that I finally decided that I would suffer through the pain of exercising. At first it was really bad. But after time it got better and easier to do. In October I could not even left a two pound weight and could only do a small amount of exercises. Now I do about two hours a day of exercises. Doing Cardio on one day and strength exercises the next. I have not felt better in 10 years. The only side affect that I still suffer from is that the exercises increase my fatigue. But I think I would rather be somewhat flexible and have a lot less pain and by tired all the time then the other way around. I wish I had started doing this amount of exercising ten years ago.

Edited by: 1GRNTHMB at: 7/26/2009 (18:59)
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Co Leader: Ankylosing spondylitis is anky-losing bad habits!

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DJCARR Posts: 165
6/22/09 11:42 P

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Welcome to our group!

I was diagnosed in my 20's - sadly a long time ago now. My eldest son is 19 if that tells you anything.

We are glad you found us.



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ROSABIANCA21 Posts: 29
6/19/09 12:20 A

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Hey everyone. I'm so excited there's an AS group. (-: Thanks to whoever told me... I was so excited I went to the group right away and failed to notice your name! haha. You know who you are: thanks!

Here's my AS story, in brief (-: I took ballet when I was 12 and had to stop after a year because of severe ankle pain. I went undiagnosed for several years. The pain was mild usually; some days I'd ache for no reason but often I'd only feel it if I ran around a lot or jumped down off of something high.

Around 16 or 17 years, my pain kept getting worse, and spreading. It freaked me out a little, because I didn't know what it was except that it was progressing to other joints and had increased pain! I would feel it in my ankles, knees, hips, lower back, elbows, wrists, and finger joints. Finally I was sent to a rheumatologist, who loosely diagnosed me with AS as his best guess. I'm negative for the gene marker, I'm a lady, and most of the pain has nothing to do with my back. Sometimes I still wonder if it's AS because exercise makes it worse, not better, and if I'm in pain the best thing to do is rest my joints. If I've learned one thing about AS though it's that everyone experiences it differently!

Only recently have I had an interesting development. I turned 21 on June 7 and had a glass of sangria. Just one because I'm not much of an alcohol drinker, but it was my first full serving of wine. The next morning, my elbows and wrists ached like nothing else! It was really bad. That night I had another glass, and before I even went to bed my knees really started to ache. Dad helped me research it and find that it may be the sulfites that are bothering me. Well, the only two times since my birthday that my joint pain has been bad was on the day of and day after I had seafood. Turns out shrimp and scallops, the two things that I had, are sometimes treated with sulfite. Weird! I don't know for sure yet and I only mention it to see if anyone else has odd trigger foods like that. (-:

I'm glad to have found you guys. As I told my boyfriend, it's isolating to be in pain from a condition no one else has heard of! I love finding fellow spondys. If anyone needs a buddy to talk to, look me up. (-:

God is good (-:

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