Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Am I a rare exception to the rule?

scarlett. aloha

frankly, my dear, it's not uncommon at all.

we call it the crab walk.

Haha, crab walk, that's funny! If I'm moving a short distance (like across the room), I shuffle my feet like I'm doing a hip hop dance. Heel-toe-heel-toe, side-to-side....... It looks really funny, but it gets me from one place to another. Even if I'm not in a flare, I have to step carefully, because sometimes a bolt of pain with come out of nowhere and if I have nothing to grab onto, I'm going down. In the last house we lived in, I refused to step foot in an entire wing of our house because it had really slippery tile. I always managed to hurt myself every time I went over there because one foot would slip out from under me. In the process of trying not to fall, I would be blasted with intense pain running up and down my backside and it would take at least an hour to recover. I'm so glad we moved.

cemc, so sorry to hear it took so long for them to realize it was your SI joint. i was lucky in that regard. 2 years prior i tear something in the rhomboid area of my upper back and had found a good PT to address that. was on my way there when the SI joint hit for the first time. i had no idea what the @#$#% had happened but figured if anyone knew it would be my wonderful PT. and she did know right away; she had me lay down and could see that my legs weren't even, had me do isometrics to correct the misalignment. then gave my ultrasound, ice or heat, and a walker to get out of there, i couldn't walk for about a week without that walker. after that, i no longer try to be heroic, if i can't walk, i stay home, vs trying to go to work using a walker. i just stay in bed (or in the recliner) on lots of ice and muscle relaxants and try to get it settled as fast as i can. it definitely recovers faster that way. this last episode, was in the recliner for a week during spring break, and it largely recovered in about 2 weeks. i chalk that up partly to the nsaid flector patch, partly to the chiro

also, scarlet. my SI joint used to flare and recover, but then in march 2008 got to the point where it was always a problem, finally sept 2009 had cortisone injections in the joints, that lasted about 6 months, didn't want to keep going in for cortisone injections, so started using flector patches april 2010, and that has helped me go back to flares and recovering in between. flector patch really helping a lot, just not enough to combat flares. but without it, i'm a mess.

ah, tim reminded me, before the flector patch, from 2008 til recently, had to give up climbing stairs, up or down bothered the SI joint for me. now i still take the elevator more than the stairs, sad really, i was always a stair climber for the exercise, but my SI joint no longer enjoys the activity.

along those lines, gave up swimming, i think it was the breast stroke kick that was doing it, and i just liked that kick too much to get in the pool and resist, but now on the flector patch, have hopes of swimming again. it really was the best overall exercise, absolutely devine for my upper back, back over all.

sitting, oh yeh, even now, if i sit too long, feels like a mule kicked me square in the butt, and have to have a flat chair, as tim said, sloping in or back really bothers me.

laying, for me, if i lay on either side for even 5 or 10 minutes, it bothers my SI joint. for me its on my back with legs on pillows to give me a pelvic tilt, take pressure off the SI joint and lower spine. the only position i can sleep in. with a thin feather pillow for my neck. but can't lay for too long, then my pelvic area (and spine) are all tight and stiff and prone to irritating once i'm up. lately, when i fall asleep in the recliner for a few hours followed getting up and then going to the bed for few hours, that seems to be the best for my SI and spine.

My eaqrliest pains thirty years ago were like that and the epicenter as you put it was my SI. Except for your description that "it wasn't too painful" It was so excruciatingly painful to move that the daggers would radiate pain that would cause my legs to fold no matter what unless I was holding on witharms strength to something to keep me aloft.

I would literally move from furniture piece to furniture piece and let my legs gather under me to regain strength.

Maybe something is blocking the pain transmission in your case.

I would fall or more aptly crumble to the ground because of the pain, but the pain would radiate to make the muscle release in a manner that in its uncontracted state I would lose all support.

My si joints flared up really bad in December on me, I thought I was going to tough it out and not get any predison. Well after 6 wks, every step became pure hell. I had to have my husband pull me out of the chair, help me to the bathroom and help me get dressed. I could not drive either because I could not lift my right leg to reach the break. After 6 or 7 weeks I broke down and called my Rhuemy they got me on predisone the same day I called and had me into for si injections within 3 days. The dr who gave me the injections said he had not seen anyone this bad and in so much pain come in for si injections before. I was still in alot of pain for about two days after the injections but by day 3 I could start to feel an imporvement. It's been about 6 weeks and the injections have helped alot.