Maybe ankylosing spondylitis, maybe not?!

Maybe ankylosing spondylitis, maybe not?

Hey all, I'm kinda wondering whether I really have AS, which I was diagnosed with by my rheumy. Quick rundown: Took ballet when I was 11, had to stop because of ankle pain. Okay for a few years, eventually spread to wrists and hands and knees and lower back. Never sore when I get up; soreness and pain brought on by extensive exercise, lots of cold on the hands, sometimes sitting in the same position a long time, being on my feet all day. No swelling or redness, just pain.

Recently I got pain in my hip joints, a sharp-ish twinge when I walk or go up stairs. I've been taking a lot of stairs recently before the pain came on. AS is the closest thing I've found, but pain is brought on by (not relieved by) exercise, and I'm just not convinced. Any ideas of what I might have, and/or how to relieve my newest pain? Almost forgot: I had a bad flare before, but when I was put on naprosen and sulfasalazine (NSAIDs) the flare died down until I had no pain for months at a time.

Thanks!

Just to clear up some possible misunderstandings, AS is seronegative inflammatory arthritis. Seronegative means one does not have the rheumatoid factor. One can also have rheumatoid arthritis without having the RF. RA and AS are both inflammatory conditions, but AS tends to affect the axial joints (i.e. back, hips, shoulders, neck...) It can also affect peripheral joints (i.e. hands, wrists, knees, ankles...). AS can also affect the eyes among other body systems.

Some people who have AS may also have Crohn's or Ulcerative Colitis. Some people with AS may also have psoriatic arthritis or Reiter's (reactive arthritis). HLA-B27 is a factor you may have in your blood that many healthy people have. Having it doesn't mean you have AS, but ~90% of people with AS also have B27. To further complicate things, you can have AS without having a positive B27!!! :< PA, AS, and Reiter's are put under the spondyarthropathies umbrella.

I have AS and hopefully, I can give you some good information. AS is different in EVERYONE who has it. In many patients, but NOT all, pain might be relieved by exercise, but not necessarily. NOt everyone gets redness and swelling either.

Enthesitis is inflammation at the site of attachment of tendon or ligament to bone. It can HURT!!! Pain may also be in the joints such as the sacral area of the back. The various locations you listed yourself as having trouble in are characteristic of AS as well. SAA lists the hands and wrists as being areas rare in being affected by inflammation, but I have the same areas and the first obvious sign to me, after the fact, was the pain and swelling in one of my fingers.

One of the things you have to learn is to do the right kind of exercise in the amount you can tolerate. In fibromyalgia, exercise is thought to help. It helps in AS too, but you cannot overdo it (your quote: "brought on by extensive exercise")! Did your rheumy take any x-rays? That is usually how a definitive diagnosis is made. BUT, in many of us, it can take upwards of ten years!!! before changes show up in the x-rays. In the meantime, damage keeps on happening and the end results can be very difficult to deal with.

You are fortunate if you have a diagnosis. Now there are many ways to treat it. The fact that naprosen and sulfasalazine helped in the past, leads me to believe (and not a medical opinion) that you do have an inflammatory condition. How new is the pain? Pain in your hip is usually felt in the groin. Pain in your back tends to radiate out to the butt cheeks and down the back of the leg...you may also feel it on the side of your leg/hip area.

How long has it been since you saw your rheumy and how are you treating the AS now? If you aren't treating it at all, then these are things to think about. If it is progressing further into your back, you don't want to let it get out of hand. If you get a really bad flare, you may need prednisone, which is a steroid, to help get the flare under control. If that worked, then you'd know it's not wear and tear arthritis.

AS has times when it seems to be in remission and other times when it is raging away. FM can exist secondary to AS and you may have symptoms of that as well, but I wouldn't think FM is your first diagnosis. NSAIDS don't help in FM.

Naprosen is ALEVE (and anti-inflammatory med) and sulfasalazine is a drug they are still trying to figure out how it works, but its action "may be related to anti-inflammatory and/or immunomodulatory properties, to affinity for connective tissue, and/or to the relatively high concentrations reached in serous fluids, the liver, and intestinal walls(why they use it in Crohn's and UC)."

There are so many things I could tell you, but I will point you in the right direction. Hopefully, you've found the AS boards by now. Good luck!!!!