Patient Comments: Polymyositis - Symptoms and Signs

What symptoms and signs did you experience with your polymyositis?

Comment from: Martie, 65-74 Female (Patient) Published: November 24

I was a full time registered nurse on a medical surgery floor. I noticed intolerance and fatigue in my legs, but brushed it off as getting older. Fatigue was getting worse as weeks wore on. I turned 66 in June of 2012, and decided to retire in July. I was diagnosed with polydermatomyositis in September 2012. By then I could not rise from a seated position, or get up from the toilet. I could not raise my arms up to brush hair, could not raise my head from pillow. Turning over and getting out of bed was awful. I had to use walker with raised seat. I was diagnosed by blood work and EMG. I was started on high dose of prednisone 80 mg for 1 week, which did not do anything for my muscles, but did wonders for my rheumatoid arthritis. Then I was started on mycophenolate 1 tablet BID, but no improvement. Dose was increased to 2 tablets BID and there was immediate improvement within 3 days. I was able to get up from chairs, brush hair and bathe. One month later medication was reduced to 1 tablet TID. As of today I am still able to rise from seat and move about relatively easy. I still have fatigue at times. I am unable to walk for long distances, but in much better shape than before.

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Comment from: mrstwells, Female (Patient) Published: October 27

I am being screened for polymyositis. I was initially thought to have lupus, but it was ruled out. Lots of pain in the legs, hips and shoulders, and arms. I have difficulty with climbing stairs, and rising from a chair. I have had elevated C-reactive protein (CRP) over 3 years (11 to 15), creatine kinase (CK) level is 279. I wonder if this elevation is high enough to be considered high for polymyositis.

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Comment from: feelingfedup, (Patient) Published: October 12

I worked for 20 years after fibromyalgia diagnosis. Then I had to retire due to back pain. I also have Hashimoto's thyroiditis and have had both knees replaced. However last 4 years or so, the fibromyalgia pain has changed. I have much more weakness (climbing stairs, standing from sit position) and my walk has changed. I have been walking my dog for about 18 months to strengthen my legs, but they keep getting weaker, and I have a real hard time walking. My thighs and upper arms are really weak. I pulled my thigh muscles twice just getting off the toilet. I wonder if it could be polymyositis. I have a lot of pain and weakness, but doesn't feel same as when I worked with fibromyalgia. Pain killers just dull the pain.

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Comment from: AUTOPRO, 55-64 Male (Patient) Published: May 13

I was told I had polymyositis 3 months ago. At age 54 my performance on the bike started dropping and I started having trouble breathing. I was a triathlete and was very strong. I also had stomach pain and had a flare up where I was so weak I couldn't button my shirt to go to work. They put me on prednisone 40 mg. My numbers got better quickly and they reduced me to 15 mg. I still ride although I'm at 50 percent of the strength I had before. I still have skin problems and my hands turn purple when it's cold.

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Comment from: Dawn, 45-54 Female (Patient) Published: March 31

My symptoms of polymyositis started about 8 years ago. When I would try to reach my arms over my head to grab the back of my shirt to undress myself I could no longer do so, and I also noticed if trying to hold anything away from my body or over my head I would drop it. My head felt too heavy for my neck, and I then started noticing that when working in the barn with my horses that my thigh and butt muscles would burn. I thought I was getting a great workout only to realize that I could no longer rise from a seated position without using my arms. Still I thought it was because I was getting older. Then I began to fall. I work in a hospital so I went to employee health where they took labs to find my CPK level at 2400. They hospitalized me for 4 days to find nothing, then I found another doctor. My CPK level has gone as high as 2800 but never lower than 800.

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Comment from: Erica, 25-34 Female (Patient) Published: October 30

I am currently going through the diagnosis process. I was diagnosed with lupus in college, then later told I never had lupus. After 2 one week stays in the hospital only 4 months apart, they think I have polymyositis. After working out, my CPK levels shoot to 20,000 causing me to go into rhabdomyolysis and acute renal failure. I also have really high aldolase levels. They just took a biopsy from my biceps and I should get the results back tomorrow at my first rheumatology appointment since 2010. I only experience weakness after workouts. So bad that I have to use my right hand to lift my left arm to turn the steering wheel. I am not experiencing weakness from getting out of bed or chairs like other people are saying. Also, I am not experiencing extreme fatigue like others. I am experiencing weakness in my hips that cause me to limp after a long walk. I'm not sure yet if I have polymyositis, but it looks like they are leaning that way.

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