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Myositis and Pain

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Old 02-27-2008, 06:37 AM   #1
Join Date: Jan 2008
Location: Panama City, Florida, USA
Posts: 458
Momof2sons HB User
Myositis and Pain

Hi all,

I was diagnosed with myositis last year through muscle biopsy. All other tests were negative. My CK was never elevated. EMG were normal ect..I havent had my CK levels checked in approx. a year at this point.
My weakness has been consistantly in my shoulders and hips, "hip flexers" inparticular. I do have weakness in my lower legs as well, but not to the extent of my hip flexers. I have been having ALOT of pain IN my hip flexers the last few months. If I turn wrong, or try to cross my legs, feels like the muscle(hip flexers) is being ripped off the bone.
Do any of you experience pain like this? Does this sound consistant with what you suffer? As I said, the muscle biopsy was positive, stating "Active inflammatory myopathy" and was done at a Major Medical Facility.
I was put on prednisone back in August, and this seemed to make the weakness worse! I was at that time also going through physical theropy which was a nightmare to the point I had an extreamly difficult time walking after, and had nothing left in me for the rest of the day. So was weaned off the prednisone, and theropy was put to the way side.
I have not been able to work since June. I have other issues which involved my balance which was totaly unrelated to the myositis. I had brain surgery in June, and I also suffer from severe anesthesia reactions, my body goes through major dystonic and myoclonic reactions that they cant stop, WHICH causes MORE muscle damage. Since June I have had anesthesia 3 TIMES(with reactions each time) the last being in late November, and thats when my hip flexers started giving me ALOT of pain. As I said, Im NOT working, and thought that things would get better with my hips rather than progressing.
THe surgery I had in November was on my lungs. I was told in late October that I had lung cancer, I had a "staging procedure" in mid November, then late November had part of my right lung removed. By the GRACE of GOD it WASNT cancer. Turned out to be a RARE infection that presented like cancer!(being on the prednisone ended up making this mass GROW rapidly) Because of where the mass was, it could not be biopsied, so a wedge resection was the only way to know for sure. The concern of course was that some times myositis can present WITH cancer . PET scan also showed "hypermedobolic uptake" which can also indicate cancer. So the surgery had to be done.
I guess, its the PAIN involved that I didnt expect with myositis. Weakness I can understand. Is this typical of the disease? I hope all this makes since with all my rambling.

I USED to be so STRONG! Had a very physical job, which I enjoyed! I Have always been a physical. Is what is going on with me, NORMAL progression of the disease?

Thanks so much for taking the time,
take care and God bless,

Last edited by Momof2sons; 02-27-2008 at 06:41 AM.

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