Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Paralysing pain

Hello all

I've woken up this morning almost paralysed with pain. I am still waiting to see the rheumy for a follow up to my MRI and xrays, so still don't know what exactly is wrong but the general feeling is AS. My apt is on dec 13th.

But this morning I am in agony, much more so than usual. The pain is in my SI area, right buttock (more to the side of it), outside of hip, down the front of the thigh and into my knee. It is also hurting in my right groin. I am finding it really hard to walk today, and I am sure at some point my leg will just give way, or stop working (it feels so weak and wobbly). Codeine isn't even touching it.

Is this a normal pattern of pain for AS? It's not sciatica as I have had that before and it's completely different.

Hope you are all well.

x

Yes, this is so typical!

So sorry you are in this flare.

For years, every few months, it would be so bad that the lower back muscles would be in such spasm, I couldn't walk without screaming in pain….

Those days were spent in bed, on ice, lots and lots and lots of ice to numb the pain…..getting up only to use the bathroom….needing my husband to help me to the bathroom…take some pills, eat some food, back in bed….

Thankfully the worst of the flares like that only lasted 1-2 days, rarely more…there was once where I was like that for 3 days….by the third day I was totally exhausted…..

Aleve and zanaflex would help some, but only some, still not enough to be able to be out of bed.

but then finally after 12 years, finally found a rheumy who would treat me.

The first thing he gave me for those flares was methylprednisone. It was a miracle. I'd only take it for these worst case flares and only take it for the 6 days that a medrol dose pack is….but so thankful I had it when I did.

You do have to respect steroids (pred, methylpred) but sometimes its the only thing that gives us our sanity.

Now been on Humira since June. and though my SI will get a little sore in the second week, nothing like in the past.

I hope you get a dx soon so you can get treated soon.

But for short term, ask your rheumy about either an NSAID like Aleve for a short time or steroids for a few days….

But that really only works if you are like me and your worst flares are short lived.

My problem was that in 2009, every august, i started getting flares that lasted a month or two, almost too bad to tolerate, something had to be done….

The only real solution for me was finding a rheumy who could dx me and would treat me.

Hello there,

When I had issues with my SI's that is pretty much how I could feel at times. Especially if I slept on that side or sat in a chair that was beveled towards the center. Even climbing stairs brought on issues.

It felt like someone ripped my right leg out of the socket and tried to jam it back in and I lived with a cloud of inflammation in the SI joint.

Hope you can find some answers.

Tim