Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Bad News

Well I was doing GREAT.

Until last week when I started getting muscle spasms down my left leg. At first I thought I'd pulled something but it didn't go away.

And eventually I just kind of knew what it was. It's my left hip.

Now, I've had some pretty horrible pain, but it's NEVER left my spine. This is the first time a joint outside my vertebral column has been affected.

I'm scared.

I'm scared that I'm back on a prednisone pulse. I'm scared that I might have to go on MTX. I'm scared that I might have to have a total hip replacement. I'm scared that I'm so young and that this happened so suddenly and with so much intensity. I'm scared that I won't be able to do my work.

Yeah. I'm scared.

Hi

I have AS for about 8 or 9 years, and it was only on the past 6 months that the pain spread to other parts of my body. My shoulder, a foot and a knee were "attacked" in this order, month after month.
Pain in the hip is very common for me. I used to suffer a lot from sciatica, that caused me lots of pain from the hip down to the knee. Maybe you are having a flare of sciatica?

Hope you get better

Zélia

Zelia, I had thought of the sciatic nerve, but the distrubution of the pain and spasms isn't in the distribution of the sciatic nerve. I think this is just peri-arthritic spasm.

Hey, this happened to me last summer and i am sitting here at work and without meds for the most part, it scared the beejeezus out of me too as it was my first major non-spinal involvement too (aside from my heels). My left hip became so badly inflammed i wanted to take my leg off and kill myself with it, I couldn't walk, i had never in my life experienced pain like it, it was in my groin and in my thigh, the deepest most intense pain ever, but it took about 2 months of increasingly niggling pains to get that bad. Like always I left it a little late before i saw my rheumy and I ended up being signed off work for 5 weeks to rest it. But, after the first couple of weeks of resting it the pain pretty much went back to your normal AS level pain and my mobility improved dramatically. Now, I do get twinges and i can't really lie on my left side because of it, but its ok.

So, don't panic, but do try and rest it if you can to settle the inflammation, and get to your rheumy asap?

I'm rooting for you, i live in fear of that pain returning, but, touch wood, nearly 6 months on, it hasn't...

Put that leg up

Are you still taking enbrel?

yo, doc mike, aloha

stuff in the legs is very common...i've had it...keep muscle relaxer on hand...

hope it just goes the way it came
hope you avoid the dreaded mtx.

wishing you all the best
aB

ya know, enbrel doesn't like eliminate flare type activity, just makes less of it.

Yes I'd like to know the answer to that. Are you taking Enbrel?
I hope you get this in control soon. A real eye opener isn't it?
With your training you'll always be able to do something productive. I'm sure it is temporary. Warm baths now.
~Kewanee

(((Mike))) It is ok to be scared. I am sorry this is happening to you with all of your life ahead of you. A little word of encouragement. I have been fighting these crazy diseases since I was 14 and I am 62 now. A lot of it has not been pleasant but most of it has been wonderful.

Just take one day at a time and "wait" to worry. I wish I could take away your fears but it is only normal for us; the fear of the unknown.

I am on a prednisone taper.....again! but I am better.....again!

I just said a prayer for you.
Hugs.
Possi

Sorry to hear that Mike... hopefully it turns out much better than your fears. I have had involvement in the past with both hips... was not even able to walk a flight of stairs and had to crawl to shower in morning.

I feel for ya... SI pain really sucks.

One thing you may want to ask your Doc about is Avascular Necrosis. The only reason I bring it up is that it can be the result of long term steroid use. I am not sure if Prednisone is the same type of steroid that causes it. I was diagnosed with it, and ended up with a total hip replacement. I have had the new hip for a year now, and wish I would have had it done a year earlier. The hip replacement was a good experience for me and has changed my life, so much for the better. I am told there are also some non-surgical treatments for Avascular Necrosis if diagnosed early, so it may be somthing we all need to watch. It took a bone surgeon to diagnose me, my rhumy missed it.

Mike