I can’t stand for it or Polymyositis.

The BBQ Pit
1

I can’t stand for it or Polymyositis.

On top of the Sydenhams Chorea, I’ve dealt with for over 30 years. The doctors are zeroing in on my having Polymyositis.

Whatever is wrong, has made me extremely sick, to the point of getting worse because of standing about 30 minutes total for the day. I’ve been only slightly sick for the last seven days. I spent seven weeks sitting on my ass or laying in bed when not at work, with rashes, fatique, headaches, excessive weight loss, and extreme pain after walking around. I actually pleaded with the doctor for just one day’s supply of a pain medicine. He took me off all medicines that I was taking for symptoms this past year. I finally had to tell my boss everyday I wasn’t getting off my ass for anything on the last severe week. This sucks, sucks, sucks!

Before getting better I could only handle standing or walking for about 5 minutes maximum in the end. I had to send my mother into the store for food, augh! I hate to do a bitch thread, but I have to let it some of it out. Anybody else here have Polymyositis? Please post. It’s not Gravis, Ruemediod, or Lymes. I’ve been tested. Creatine Kinsis is at 330.

P.S. No medication so far, and no tests for a week. I got drunk tonight, so some relief. No offical diagnosis yet, that ruemetiod doctor appointment is in one week. I hope this is it. since then the doctors will have some idea as to what to do. This finally has gotten bad enough for the doctors to stop blaming it on Sydenhams Chorea or arthritis. This is the brief summury, leaving out a lot of details.

I’m not asking for pitty, just anybody’s same experience, and I want to say, FUCK!

2

This ain’t a “pit” reply. Hang in there Phobia. I have no idea about these things, but it sounds fucked. I’m sorry, bro. Whatever the deal is, hang in there. Contact me if ya need an ear. Seriously.

3

That really sucks, Phobia. I can’t even pretend to imagine how that must feel. My wife can, though. Well, to an extent. She has dermatomyositis, which, to the best of my knowledge, is the same as polymyositis, except with a very persistant rash that can show up just about anywhere on one’s body. Luckily, Farrah’s rashes are fairly pale and can be easily masked with makeup.

She has a very rare case of dermatomyositis in that it’s mild. Usually it’s a debilitating disease that eventually confines a person to a wheelchair and then kills them. Farrah’s specialists expect her to live to a normal age.

Lately, she’s been feeling pretty good. I guess you could say her myositis is in a kind of remission. At times, though, I’ve seen her reduced to tears from the agonizing pain in her joints and back. The rashes itch so much that she scratches her head in her sleep. She’s also very photosensitive.

She’s had some luck with glucosamine, one of those herbal medications, used mostly for arthritis. She says that if you do get some glucosamine, though, get the expensive stuff. The cheap brands don’t seem to work as well on her. I don’t know if this will help you out or not since your case is so much more severe than hers.

Marijuana seems to help her a bit, too. It might be worth a try.

Some myositis sufferers have also reported relief with Celebrex, a prescription arthritis medication. It didn’t seem to work too well on Farrah, though.

If you are diagnosed and the symptoms you describe continue, they may put you on steroids. The side effects of those aren’t too pleasant. :frowning:

If you have any questions, you can email her at froperty@yahoo.com . I’d have her post, but I’d need a cattle prod to get her onto a message board. She said that if you do email her, include your gender and age, as it bears some relevance on the effects of inflammatory myopathies. I think it does, anyway. She knows much more about it than me. She also knows far more than me about the workings of the body in general, in fact, since she’s a nursing student (a damn good one, too).

She also recommends that you visit Myositis.org. They have a message board and a good bit of information.

Good luck, Phobia. I hope your pain recedes soon.

4

Thursday is the doctors appointment for this testing. I’ve been on Prednisone three times in about fifteen months, without a diagnoses. I’ve had breathing problems that don’t respond well to the four asthema medicines I’m taken. This has hit me in bouts for years, and all I would get is “Take an asprin.” It hit hard enough this time that even the most resistant doctor had to acknowledge a problem.

I have the problems reguardless of the diagnoses. A diagnose would help for when the attacks hit to provide a clear treatment. I’m being checked for Dermatomyositis, and Polymyositis.

It has been better for a week now, because two weeks ago I simply refused to get up out of my chair at work, and I went home and sat in a chair or laid in bed after work. Breaks and lunchs were spent lying down to completely rest all my muscles. My neck was so fatiqued I got headaches that went away while my head was supported.

My job can be done sitting for the most part, it’s the running around straightening out what others didn’t do that kept this getting worse. Some people don’t get it, when you tell them you can’t stand up. I finally started telling everyone “I’m not moving my ass out of this chair, and you screwed up, you bring it back corrected.”

Currently I’m moving around until the muscle fatigue starts bothering me, and than I rest. I’ve stablilized the weight, and the ck levels hit a normal level.

Thank’s for the information neutron star and your wife’s offer. I’ll see what diagnoses I end up with, and maybe after the appointment send out an email. Thanks for the offer Democritus.

5

I looked in the mirror one morning and relized that I looked like I’d been in a fight. The discoloration around my eyes looked like I’d been punched in both of them. I stopped shaving because it got to the point of brush my teeth and comb through the hair, or shave.

Why go to work when it’s this bad? Work pays the insurance, and it’s nice to eat. Not that I got in a full work week in the last month.