Patient Comments: Polymyositis - Symptoms and Signs

What symptoms and signs did you experience with your polymyositis?

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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Comment from: yvelicious76, 35-44 Female (Patient) Published: March 09

I am 34 years old. I have polymyositis for four years now, and it has changed my life. It is very hard to adjust to this. I work 20 hours a week now, down from 40 hours, just to keep me sane. I take prednisone and methotrexate. I don't think they help me much. Every time my cpk goes down, I get a flare-up when I start decreasing the prednisone. But I have to keep fighting this. Some days are better than others, and the pain is a reminder of what I have. But at the end of the day, love and family are my real cure! I hope to be in remission someday soon.

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Comment from: Don O, 45-54 Male (Patient) Published: July 06

I was diagnosed with polymyositis in 2000. It has already eaten my muscles in my lower legs. I have pain throughout my whole body. I have trouble swallowing and I'm having lung pain. It's hard for me to walk because my legs give out. I have to use a walker. They say no one has died from this. I may be the first because my disease is moving rapidly. I hope for another remission.

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Comment from: Victorina, 55-64 Female (Patient) Published: July 06

My mother had it and died of it in 1980, and was given valium for 15-18 years, because her GP diagnosed 'housewives neurosis.' Apparently, it's so rare here (New Zealand) that it was only diagnosed a year before she died. There are currently four people in our whole country diagnosed with it (I worked with one of them). In her case, her main symptom was unsteadiness and muscle weakness, culminating in an inability to walk, swallow, or breathe. She was given steroids, but it was too late.

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Comment from: pacegal, 65-74 Female (Patient) Published: August 29

I first noticed a swallowing disorder (polymyositis) in 2006 - then leg weakness in 2008 and it kept getting worse and worse until I couldn't get up without help from a kneeling position. I found I shook a lot when I got too tired. However I had no pain in my muscles at all.

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Comment from: southcows, 45-54 Female (Patient) Published: July 25

I was diagnosed 7 years ago with polymyositis at age 39. After high dose prednisone and eventually remission I had a flare-up and for the last 2 years have been on 5mg prednisone daily and 20mg methotrexate weekly

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