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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Muscles & Bones
/ Polymyositis & Dermatomyositis Support Group

muscle pain and weakness

im45notcrazy
im45notcrazy
I was wondering what it felt like to have muscle involvement. Lately out of nowhere I've had a lot of pain in my right arm and its difficult to pick things up. Now I've got pain in my left arm. After my nightmare experiences with Doctors I quit taking any medication, With this sudden onset of pain and weakness, I'm paranoid that its the DM. Can anyone tell me what muscle involvement feels like?

I was wondering if it is possible to fight this disease with exercise? I can't work out like I used to, but I just keep trying. So a lot of times afterwards, I just feel like I was run over by a truck for a couple of days, but I figure if I just keep pushing on it might help.

Lately I've had my funky mouth rash, joint pain, muscle weakness, hoarseness, and my vision seems to be messed up - very weird- can't sleep of course and, I hate to say this but I have the worst itching in the nether region. My eye rash isn't at its worse, but still there.

Any advice?
pluggingon
pluggingon
All your concerns sound very familiar. Pain in both arms, very weak wrists, fatigue, joint pain, muscle weakness and voice weakness when so tired. That's some of what I deal with. I have Undifferentiated Connective Tissue Disease. Dermatomyositis and Polymyositis are included in my mix, so that's what is responsible in my case. Right now I have soreness in my mouth. It started several weeks ago when I had dental work done and my mouth had to open wider than it could--I also have Scleroderma--so the damage hasn't healed, though it's about three weeks since that incident. It now covers a larger area in my mouth. I hope your doctor will know how to relieve your flare. We each need individualized treatment, since our bodies don't react the same to medications. There are a lot I can't tolerate, so it's often just a trial. I hope it won't be long before you you feel better.
autumm
autumm
Hi Im45notcrazy. Not a good idea to stop taking all your drugs without medical advice. I am not a doctor so the best advice I can give is to see your doctor and have all your labs checked. This is not a disease to mess with and no you cannot cure it with exercise and if you exercise when the disease is very active you may make it worse. The treatment is steriods and probably a sparing drug under the care of a good Rheumatologist sometimes a Neurologist or Dermatologist. There is no cure only periods of remission. You need to complete a course of treatment as directed by your doctors to suppress inflammation and prevent other organs becoming involved.autumm
lexisgirl
lexisgirl
For me, the muscle weakness is like the muscles just won't work anymore. I can't "will" my legs to run stairs. I can't make my hands open a jar....things like that. At first, it reminded me of how my muscles were sore after extensive exercise but all I did was sleep all night. It isn't uncommon for our muscles to get weak enough we fall often and drop things.

You can't exercise the way you were. You need to adapt your work out to be more gentle on your body. Your muscles are already being attacked. Attacking them with an extensive work out isn't helping at all. Please see a physical therapist that specializes in muscle diseases. They can help you come up with an exercise program that works for you.

As much as we hate the drugs, I keep taking them because I want to remain as mobile and independent as possible. This is a progressive disease so we need to do as much as we can to slow it down. The drugs do that.
nanny1611
nanny1611
Like Lexis, many of my muscles wouldn't move no matter how hard I tried and concentrated on making them move. During my research, one person with PM described it as, "My brain says go, but my body says no." My neuro explained to me that the muscles get so inflamed that they are unable to receive messages from the brain and nerves. Thus, the muscles do not move. Lack of movement causes atrophy, and inflammation destroys the muscles. In my mind, it seems that the higher one's inflammation, the less able the muscles are to activate. So, lifting something as simple as a plate becomes almost impossible.