Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group fellow AS's have you ever had pain like this?

Hi saltire...yes, I had those spells early on but then the pain became constant as the fusing process had begun, my spine is now 2/3 fused, I have complete fusion in the L-spine and C-spine...now the T-spine has started fusing and those symptoms have re-appeared in that area...

I didn't start getting major lower back spasms until about 7 years ago (and at least 25 years after first AS type problems). First episode was a nightmare. Only got loosened up when I added diazepam into the drug mix. That thankfully got me moving again. Then 5 years ago it was lower back muscle spasms that got me sent to a neuro as an acute admission and suspicion of MS. They ignored the fact that I also had bladder problems (should have been a red flag for lower back problems) and the only real treatment I got was diazepam again, but by this time the spasms just weren't going away for more than four hours or so. They would have me absolutely screaming in pain. Back muscle spasm is what has made it incredibly difficult for me to walk, keeps me on 80 mg of baclofen a day, and is what limits me most. Though once I got onto full dose NSAIDs it toned it all down considerably - proving to me that it has at least some inflammatory component (though not to my doctors).

The horrible catching/knife in the back pain when I moved my legs was one of my earliest symptoms. I was 18 in my first year of uni & after sitting still in a lecture, I'd get up to leave, move a leg and bam, that agonizing sharp pain down the bum & into the leg & I was frozen solid trying not to look like an idiot. 7 years on & remicade has improved it but it will still catch me when I least expect it. Especially if I've been stationary driving for hours. Can be very hard to explain to passers by when a young 25yr old girl can't walk past or move her legs & is crying in a car park. But like everyone else, we learn to manage.
The dreaded AS.

Yes. Exactly. Happening now because I had the audacity to walk 3.5 miles on a flat trail with my old hiking buddies... 4 days ago!

The only good news here, is that after living through gazillions of these stupid experiences, I know it will eventually end.