Patient Comments: Polymyositis - Symptoms and Signs


What symptoms and signs did you experience with your polymyositis? Submit Your Comment

Comment from: SwimmerGirl, 45-54 Female (Patient) Published: April 18

I was diagnosed with polymyositis yesterday. The first sign of a problem was 8 or 9 weeks ago when I first noticed Raynaud’s phenomenon in my fingers. A couple days after that, my legs felt abnormally heavy when walking up stairs. Within two weeks, the muscles in my hips, thighs and shoulders felt weak and it became progressively more difficult to make it up one flight of stairs. I had been exercising 3 times each week before this so the difference in my strength was stark.

Comment from: Kimberly , 45-54 Female (Patient) Published: October 26

I was diagnosed with polymyositis and dermatomyositis in 2012. I was fine one evening, went to bed, and woke up itching and red. I fell back asleep, woke up and couldn't get out of bed; I couldn’t even turn my neck. I was taken to doctors who thought it was lupus but they got biopsy done. Also muscle enzymes were 18000. Finally diagnosis was polymyositis; the doctors didn’t know what I had, never had a patient with it. Prednisone helped but methotrexate injection didn’t help. Rituxan infusions and prednisone do help but there is bone loss. I have to have hip replacements next; painful disease.

Comment from: smak, 25-34 Male (Caregiver) Published: October 18

My husband was recently diagnosed with polymyositis after months of being unwell. He had high CPK 3000 plus, facial swelling, weakness, problems swallowing, and excessive phlegm. He's been on steroids for 6 months and just recently started on Imuran. However his CPK is back up to 1000 plus so I am not sure where he goes from here. I am waiting to speak with the consultant.

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.

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.

Comment from: Em, 55-64 Male (Patient) Published: October 24

I came down with stomach flu Wednesday evening. Began feeling better by Saturday, but then Saturday night I was throwing up all over again, and now I'm back to square one. I'm really worried as all I can drink is water and I feel so dehydrated. Wondering if I should speak to a general physician.

Comment from: Jacko0573, 35-44 Female (Patient) Published: June 07

I'm confident I have gastritis as I suffer all of those classic symptoms. Mine was no doubt stress induced originally. I only get it about 4 or 5 times a year, but the latest episode was extreme. I got desperate and did something a bit radical. I had downed some antacids and achieved nothing but more pain. I needed relief. I decided to drop 2 Valium 5 mg each, and within 45 minutes I was sound asleep and woke up feeling pretty good. This gave real relief, I'm so happy, the pain was a solid 7 before.

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!

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.


The term arthritis refers to stiffness in the joints. See Answer
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.

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.

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.

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.

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.

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.

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.


Pain Management: Surprising Causes of Pain See Slideshow
Comment from: Almondbd07, 45-54 Female (Patient) Published: February 04

Twelve years ago I was diagnosed with polymyositis (PM). It took a year and a half for the doctors could figure out if it was PM or dermatomyositis. I started out with a high dosage of prednisone and methotrexate only to find out that I was allergic to methotrexate, which was replaced with Cellcept. I was doing fine, working a full-time and a part-time job. I exercised every chance I could with walking and Zumba classes. I was only taking Cellcept, vitamins and supplements. As long as I was moving my body I was fine. Four months ago my CPK was up to 3000 and weakness set in my hip area. I am back on prednisone with Cellcept and am only working part-time but staying busy moving, this is the only relapse I have had in 12 years. I am feeling fortunate that I am still moving. I noticed that when I was lying around not doing much my pain increased and I was taking more ibuprofen. I am not taking painkillers yet but I have added massages to my ritual to keep my muscles loose. I am getting ready to start an exercise program and eliminate sugar, and white flour and wheat out of my diet. I will keep you informed on how I am progressing.

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.

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.

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.

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.

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

Comment from: Katherine, 45-54 Female Published: February 01

Back when I was around 45 it started with muscle weakness in upper body. Went and was tested by many physicians. I also had loads of PT. Then in 1950 they found cancer of the uterus. The cancer was removed and I was told I had been suffering from polymyositis.