Patient Comments: Polymyositis - Symptoms and Signs

What symptoms and signs did you experience with your polymyositis?

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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Comment from: LauraB, 55-64 Female (Patient) Published: March 18

I developed polymyositis sometime in 2007. At this time we are thinking I may have gotten it when I worked on a contaminated uranium clean-up site that I was working at. I have always been healthy and very active. About 3 months after leaving the site I started to notice weakness in my upper arms. I contributed that to getting older. As the months wore on I lost weight, could barely walk, had slurred speech and my head was resting on my chest as I have no muscle strength left in my neck. I was admitted into the hospital in September 2007. The diagnosis took a couple of weeks after tests were conducted. The muscles in my body were so withered it was almost impossible to analyze but enough tissue was there that they could. I was diagnosed with a hybrid dermatomyositis/polymyositis. I was in the hospital for over 4 months. I had a tracheotomy and was placed on a respirator to breath and had a g-tube placed in my stomach for nourishment. I also had a PIC line installed so that I could have blood taken and necessary treatment given to me without trying to find a vein. After 4 months I was transferred to a nursing home. I managed a month there and finally came home. I was 85 pounds and so weak I could barely walk. I had a wheelchair at first, graduated to a walker, then a cane and finally I am on my own two feet. I have had ups and downs and lots of frustration. But I never give up. I have found that acupuncture really helps with the muscle issues; healthy eating does work and avoiding all read meats because of the inflammation caused by it. Fish, Chicken are the best foods to eat. There are naturopathic diets that deal specifically with this disease and really help immensely. Also vitamin D3 and calcium are a must. I have also been introduced to Asian herbs specifically dealing with my disease and that has helped tremendously. Do your research on what you have and think out of the box. Doing different things outside of the medical world has worked well for me.

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Comment from: Ross, 55-64 Male (Patient) Published: April 22

I am currently just getting started in trying to find out what is wrong with me. I have had Raynaud's for about 3 years. My fingers freeze up and turn white when they are cold. Also I sometimes choke when I eat. I just thought that was because I was eating fast. And for the last 5 months my arms from my shoulders to my fingers are in pain all of the time. I have lost muscle in my arms and my upper body. My CPK level is 585 and has been higher over the last 5 years. I think I might have polymyositis but am still going for more tests. I will see a neurologist next week.

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