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.

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.