Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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freelee 11/25/2012

I know this sounds completely crazy but about once a month i wake up feeling like my arms and legs are on back to front and all twisted. It is always associated with extreme pain. does anyone else get this? I guess it is my mind trying to make sense of the pain in my body but I cannot shake the feeling all day. (Today is one of those days)
I am so fed up with feeling bad and being sick and having to be careful about everything I do. Sorry just need to vent.

nanny1611 11/25/2012

Most times I feel like my head isn't sitting right or centered over my body. In addition, my shoulders feel lopsided (one up higher than the other, and one sitting forward while the other is back more). I don't know if this makes sense, or if it is anything like you are describing, but it's what I experience. Very uncomfortable and makes sleeping difficult. I'm sorry for the distress your body is under today and other times. I hope you get better soon.

deleted_user 11/26/2012

I hav ehte same thing with the shoulders. I feel like Quasimodo. One shoulder feels much higher than the other, but it isn't really visible. I thought I was just wierd.

nanny1611 11/26/2012

That's interesting, dannycallahan. "Weird" is the right descriptive. BTW, do you have DM or PM. My "Quasimodo" feeling didn't start at the time of my PM diagnosis. It was about 6 months after my shoulders started popping, cracking, and hurting, at the same time I had a rash, that I was diagnosed with overlapping DM and Lupus.

freelee 11/27/2012

what i am getting sounds like same thing, just different parts of body.

trpt1 11/27/2012

Is it possible that the Quasimodo feelings are rooted in the brain? I have strange feelings at times but not as intense as what you describe. I am sure my feelings are brain based from the meds. My neck will hurt bad and I will need a heating pad. My head will hurt and I need an ice pack. Very strange feelings.

deleted_user 11/27/2012

I have DM and I thought that the issue with my shoulders was from muscle weakness, but I saw myself walking in a mirror and didn't notice any hunching or slumping. I don't know if it is visible or if it is just in my head. I will check with my wife to see of she has noticed anything. By the way, sorry for all the mis-spellings in the last post!

deleted_user 11/30/2012

Don't underestimate yourselves!! PM (and probably DM too) can effect the shoulders just as much as hips. I'm going on like forever w/PM and my massage therapist told me i have rounded shoulders and one is "taller" than the other when I lay on my stomach.

Never had the dream thing but sometimes when I'm lifting weights, feel like I have the strength of a muppet.

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