i'm not the only one!!!!!.. Been living with it since 21, diagnosed at 26 and i'm 31 now... NIGHTMARE..
I've had things said to me such as, "all in the mind", "nothing wrong with you", just a back ache, don't be so silly, all of my life, and from all of my doctors. I was run over at 21, not seriously, but the shock and having then hla-b27 gene started AS. From the knee swelling (you've sprained it), to swollen feet (sprained ??), to LARGE TOE (gout, do you have an alcohol problem?), to a pain in my left "butt cheek" (take an asprin, you've been sitting awkwardly), to iritis 4 times, hips that can't support my weight (and i'm not BIG.. only 5ft 1!!), to IBS. 4 years of going to the doctors, with swollen joints, body burning up with inflamtion, knives attacking my neck from the inside, not being able to move, having to learn to walk again, not being able to talk because the pain is so bad.
Finally, after I demanded a private health clinic that they sort out my knee (they did an exploratory..didn't find anything). I was hospitalised with serious pain, "colitis" they said, that's what you've got. It wasn't until I was ill again, that a rheumatologist, luckily for me, "happened" to be passing by. He diagnosed me within seconds. He KNEW what it was I cried in relief (funnily enough, the eye casualty doctor a few years back thought it was AS, gave me a note to take to the GP, and he laughed and chucked it in the bin.
Anyway, I've got it. I have flare ups occasionally. I try to control it, can't find a way. I have been exercising, dieting, keeping healthy, it still happens. I've tried glucosomine, sound healing, accupuncture. The only thing that works is hydrotherapy and yoga. Sneezing hurts like hell. I have a great way of stopping it, and boy to people look at me strangely !! I get depressed, i'm up and down, can't take anti-inflammatory as it iritates my stomach. Steroids help, but my bone density is now very low. So i try not to go on it, but sometimes, that's the only thing that i can do.
Drugs. Give me more of anything to stop the pain! Aloe vera, I'm going to try that for a while i think. Has anyone tried it? Humour and positive thinking is the only thing. It's so hard to do, but having a fantastic boyfriend helps. I take sulphasalazine, 3 a day, for life now. But i'll cope, even though the pain at night is excrutiating. I'll cope. You have to. I don't want to diet. I love food too much, I know I have to change my lifestyle, but there is only so much you can do. I have been fine for 3 years, and now I have had flare ups within 6 months of each other.
Work is fine. I don't take that much time off. I try to get back to leading a normal life. I think it's important. I have also been fit and healthy, doing the gym, aerobics, dance aeorobics and swimming 4 - 7 times a week, for 4 months, then suddenly I can't do it anymore. Maybe i pushed myself too hard. Right, that's it. I know what i've written isn't structured, but i'm writing as i think! I guess you all get the gist of it anyway.
I'm trying reiki too, i'll let you know how it goes. Email me if you want to chat. i've never spoken to anyone before to compare symptoms. All my friends nod and are sympathetic, but if only we could give them the pain we feel for 5 minutes or so then they'll know EXACTLY what AS is all about (sigh)