Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fibromyalgia Anyone

Hi Simone,

Thanks for that bit. It makes a lot of sense. My Rheumy started grabbing real fast so I was unable to count, I think I was too busy going through the roof. We stopped all the wild drugs and I will be on Celebrex and Tramadol (Ultram) only after I reduce the prednisone and just six more weeks of INH. Once again thanks.

Doug

May Pain Freeness be with you!!

I was dx'd with FMS only after being on Enbrel for awhile. Before Enbrel, my AS was so flared up, it would have been impossible to sort out which pain was which. I can hardly bear to be lightly touched because of the pain, and having someone prod on those pressure points is nasty.

I take Flexeril at night, and it seems to help marginally with muscle spasms. I have tried several anti-depressants, but none helped with the pain. Hot showers, gentle stretching, and getting enough rest help a little. Narcotics knock the edge off the pain, but I get so few, I have to ration them. I only take them when I need to go somewhere.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Hi,

Those lumpy bits in the muscles are they are near the bone ie muscle attachments. My rhemmie reckons that's the SpA ReA as that's where it mainly affects you! My bones are ok it's the attachments points disks which are mainly affected!

Tramadol is really good for the pain, wait an hour or two after taking them then get into those points with pressure etc, watch the improvement. I found that when on higher dosages of preddy I do not get much inflammation afterwards.

Take Care good luck!

David

I saw my rhuemy the other day and he also thinks I have fibromyalgia on top of AS. Hard to believe. He sent me for another bone scan and lots of xrays and blood tests....9 vials of blood to be exact. I think it will be interesting to see what the bone scan shows compared to my last one. I feel like I have really gone downhill.
Sherri

Hi Doug,

Along with the great stuff you've learned on this thread, I'd like to add that from what I've read about FM...sorry I don't remember where I read this, I'll have to try and find it again.

There is also the theory that it is some disorder of the central nervous system. The CNS sends out signals where things that are usually NOT painful (like sitting in a chair for a few minutes or wearing a woolly sweater) become excrutiating due to some misinformation happening between the central nervous system and how it's interpreted by the brain. Sitting in a chair for a few minutes becomes unbearable and wearing the woolly sweater feels like your skin and muscles are burning due to the misinterpretation of information by the brain of signals traveling up from the body.

That DOESN'T mean the pain isn't real...the pain IS REAL. Docs are looking into examining the central nervous system of FM patients to research how these mixed signals happen.

Rox

Because Happy Bunny 0\/\/|\|z and you know it.
http://www.geocities.com/artisan1998.geo/index.html

Good Day,

Thanks to everyone who provided such extensive information on FM. That information helped allot with guiding me through a maze of data on the web. I would like, however, to just take a little trip out in left field if I could.

I was lounging around thinking about what is happening to me these days (a bit self absorbed?) and remembered a little controversy at the GP's office. When I returned after my second infusion I was asking why this time Remicade did not work. Through discussions with and between my GP and my Pharmacist, I learned that a dose of Remicade was left out over the weekend unrefrigerated. (This incident was known by both parties prior but was not relayed to me until I started nosing around) It was quite hot here in Bavaria over the summer and during that time. Now I was under the impression that, Hey, the second dose was left out and that would be why it did not work. After the third infusion that did not work, I again discussed the issue with both folks and received clarification that indeed it was the first dose that was left out over the weekend. Now the first dose was like Double WOW, I was brand new, superman for ten days. Strangely enough, as time past and I was receiving more infusions, I was becoming progressively worse with pain in many joints and the usual AS pains as well. So the Rheumy says no more Remicade.

Now I am building up to 200mg of Tramadol per day, I am at 150mg right now, and the only pain I have is my original AS pains I have always had. You know the type, butt, back, feet, ankles, shoulders, and wrists. Now after all that typing I am trying to get to the point; What happens to Remicade when it is left out and not refrigerated for about 72 hours and what does that do to ones insides? Could a unrefrigerated dose lead one to the opposite effects of what Remicade is supposed to do? Am I in the process of working myself up over nothing? How far out in left field am I? Am I looking for something or someone to blame for my failures? Do I need my Remicade heated not stirred?

Thanks allot again, this is obviously the ramblings of a mad man.

Have a great day!!

Doug

May Pain Freeness be with you!!