Patient Comments: Polymyositis - Symptoms and Signs

What symptoms and signs did you experience with your polymyositis?

Comment from: Frannyfran, 45-54 Female (Patient) Published: January 20

I was just diagnosed with polymyositis. I just had a muscle biopsy done that shows that I have the disease, but before that I was struggling for 3 years with severe pain and stiffness. I was deficient in vitamin to put as borderline diabetic. My rheumatologist said I put a wrench in the diagnosis for this autoimmune disease. It does affect my trunk, shoulders, but also my feet, hands, arms, and legs. The muscles contract and stay stiff and stay contracted sometimes seconds, minutes, or hours.

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Comment from: still kicking, 55-64 Female (Patient) Published: January 05

I've had polymyositis and dermatomyositis for 30 years. One morning I couldn't get out of bed due to weakness and had red squally scabs all over my body. I looked like a lobster. I rushed to the hospital and was diagnosed with polymyositis. My CPKs were at 20,000, yes 20,000. I was given 220 mg of prednisone and was told that if this didn't work I had a month to live. Well, 30 years later I'm still kicking. It has been a very difficult journey as when first diagnosed the doctors didn't know what to do with me but after a great deal of research they were able to help me and save my life. I'm still on prednisone, Imuran and many other medicines due to side effects from the prednisone. Methotrexate didn't work for me and I have tried quite a few IV injections and other medications with no luck. I will live with this the rest of my life but I never give up. I fight every day to keep going as my muscles are always weak and sore but enjoy my life with my kids and grandchildren. Never give up your struggle you can enjoy every day to the fullest. Best of luck.

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Comment from: yeast no more, Female (Patient) Published: December 22

I got 2 yeast infections within 2 months apart and the first one I treated with Monistat 1. Horrible! Never ever use Monistat 1. It literally burns your vaginal skin and walls and causes a lot of internal and external damage. When I finally healed a month later, I got another yeast infection. I refused to take Monistat again so I researched natural remedies online. One natural remedy I tried was sticking a clove of garlic in the vagina. I wrapped the garlic clove in gauze and tied it with dental floss so it would be easy to pull the garlic out when necessary. Garlic worked wonders and cured my yeast infection within 24 hours!

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Comment from: Denver62, 45-54 Female (Patient) Published: December 16

I began to experience muscle weakness in my legs about 10 years ago. It was getting more difficult walking on stairs. I was finally diagnosed with polymyositis. I am taking low dose of steroids and methotrexate. I don't have any pain but sometimes experience bouts of walking really slow. Stairs, curbs and rising from sitting positions are difficult. I'm more embarrassed from this than anything. People are always asking me if I'm ok. Other than that I still can get around. Stay positive and remember there are others going through this as well. You are not alone.

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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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