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

I can't walk when I have a bad flare. Not that it's too painful to walk, I physically can't walk. I can clench my teeth and hold onto things as I slowly make my way across the floor and watch snails pass me, but sometimes I can't even do that. I'll be standing, go to take a step, and find myslef on the floor. I have pain all over, but my SI joints are the epicenter of it all.

So anyway, I had my first Humira injection today. I met with the RN and it sounded like she did this all the time (educate people on how to take the meds). While we were talking she asked me when my last flare was, and I told her I just got over one. I explained that it was a mild flare, and when I get the really bad ones, I can't walk. That caught her attention and I can't remember what she said, but it sounded like she thought that was uncommon.

So am I the oddball?

Hi Scarlet,
I've never heard of what you describe does your Rheumy know about this. It could be trapped nerves in your spine. Or could it be your brain putting your muscles into spasm to avoid the pain of walking.

Kevin

yeh, when my SI joint is in a flare, there are times i literally can't walk, sometimes hubby will have to help me to the bathroom screaming all the way. thankfully i'm not like that often. but for me, when the SI joint is inflamed, my muscles spasm so strongly in response that even a little step hurts too bad, both the strong muscle spasms and a very sharp pain in the pelvic area / SI joint, like something's not positioned right or something......

how common is this, i do not know.

but i've been here a few years and have heard others say similar things.

but i do know when i talk to doctors about this and about tearing tendons during flares, well, the most recent rheumy, dr B, told me that most people with undiff spondy don't have flares that bad. but did say that if the inflammation is really bad, these things can and do happen; he wrote in my letter back to my GP that i have "prominent enthesitis", also that undiff spondy can be highly episodic, which it is for me. so i guess he doesn't see people like me, like you, too often, but he wasn't necessarily surprised either.

My first really big flares were exactly like that. Really painful SI joints, and incredible muscle spasm through pretty much the whole buttock area. It did make it absolutely impossible to voluntarily shift my legs forward. The only way I could do any movement at all was with two crutches.

You really want to knock the inflammation to stop this happening, but you might need to have a back up plan. I always have a bottle of diazepam available, and that makes a pretty good short term muscle relaxant. Also, you might want to get yourself a pair of crutches to be able to at least use around the house when things are really bad.

I don't know about how common this major kind of SI muscle spasm thing is, but I know it wasn't recognised in me as coming from SI at all - I ended up in a neurology ward, and when they couldn't find anything neuro wrong they put it all down to me being a hypochondriac and just putting it on. Its only five years later (and five years of walking with crutches) that it is becoming clear to doctors that I have something inflammatory going on.

Hi Scarlet
Sorry to hear about your painful flares.
Yes, I was exactly the same when my AS symptoms were coming to the forefront (ie I could no longer ignore them) before I was diagnosed with AS. I could not walk either sometimes and had to literally lift my legs to move them when in bed. When I eventually found a spot that was relatively comforable I would barely breath let alone move for fear of setting it off again! Somehow the mechanism for walking did not seem to be working properly and I would totally give way and collapse or would have to move one small step with assistance and then wait to recover and then take another. It was a nightmare. I did not know what the hell was happening to me. I had a small episode last year and immediately re-started the NSD to get myself under control again. Not easy to explain all this - hope you get what I mean.

You are certainly not the only one and this was the worst part of AS for me when I had it as it was soooo painful and soooo dehabilitating and scarey too because everytime I moved I got a lightnening bolt of pain hitting me. I really feel for you

Hi Cemc



Absolutely and completely the same for me.

My doctor thought I had a back injury and I was signed off work and told to rest.. of course this made the problem esculate and I got worse and worse - because it was actually unknown to all of us that I had AS.

Tinkerbell, I know all about that being told to rest and it just making things worse! I just went downhill so fast it was unbelievable. Was spending all day every day in a recliner, and taking unbelievable amounts of diazepam to try and stop spasms. Only started coming right when I decided it had to be some kind of arthritis rather than chronic fatigue or fibromyalgia or functional neurological symptoms and started taking regular full dose NSAIDs.

So, not to hijack the original post, my advice still is: deal with the inflammation, use muscle relaxants at least temporarily, heat or ice as well, and if you need walking aids like crutches or a zimmer temporarily use that too, but definitely don't stay immobile.

Hey there,

When my right SI was in flare, I had similar issue. Entire SI felt like a ball of inflamation and got so painful, a wrong step could send me to floor as any weight was unbearable.

At this period I really had to watch several items and how i did them.

- I had to climb stairs one at a time and always lead with left leg... going right leg first put too much pressure on SI and caused inflamation to flare more
- could not sit in many chairs... had to have a flat surface.. anything beveled pinched in on my hips and led to inflamation
- worst was sleeping at night.. could only sleep on left hand side or sitting in chair. I usually had to alternate between sleeping in bed on left hand side and in chair.

Fortunately SI has cleared up with diet or when I was on azulfadine. Nothing else ever even touched the pain.

Thanks,

Tim

I had trouble walking many times, but not due to pain. I would stand up from my desk and not be able to move my legs. I'd pull myself hand-over-hand around my desk, get to the door after eons had gone by, then hold onto the door frame until I could try walking again. It would take ages for my back to loosen its stranglehold on my legs. My family doctor was only a 10 minute walk from my office at the time. I had to walk there for an appointment at this point in time. It took me over a half hour, once I'd got my legs working so I could take a step without holding onto anything.

She said it was back strain and prescribed 3 weeks bedrest. I'd been dealing with iritis for about 6 months by then.

I'm not sure if that's what you're talking about, however.

Hugs,

Scarlet,i have been there but just my right leg i could not walk stand up or sit for very long.my rumy sent me to the Cleveland Clinic(one of the best)after some morphine and a few more shots,some xrays,and cat scan a night in the hospital with my old pal Mr. Morphine.the Dr. told me he would cut me open rebrake my back take out my rods & screws(i'm fused from T12 to L3)put in more rods & screws fuse 10 vertebra that would help straighten out,help me to stand tall again said it would be a little uncomfortable.WHAT ARE YOU NUTS!!!getting a tooth pulled is a little uncomfortable.so i went home and in a week or so the pain went away just as fast as it came i don't know why neither do the Dr.so may be time is your best friend,stay well.


Tommy P.