polymyositis

Does anyone have experience with polymyositis? My dr. is testing me for it. I get an EMG on Wed. Please let me know if you have it and what you're symptoms are. I can't seem to get diagnosed. I am having muscle twitching everywhere including my stomach and neck, leg cramping and muscle burning in my quadraceps. This has been going on for few months. I also get fatigued really fast. They ruled out a bunch of stuff with blood work and now I'm going to a neurologist. If you do have it, do you get relief from anything? Will I ever get my life back? I am 38 female with a small child.
Thank you.

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The Myositis Association may be a good resource for you: www.myositis.org.

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I have it. another member of my family has it or mixed connective tissue disease. Our symptoms were similar, but some were different. . What lead to a diagnosis after months of inconclusive testing was the muscle test you describe and finally a muscle biopsy of three muscles. That is important, because as a doctor told me, the disease can show up in patches in the same muscles, so they can biopsy one part of a muscle and it will not show up, but in the same muscle it will show up. In my case, the three muscles they did biopsy showed abnormalities in all. That is what clinched the deal.
Also, if they do a biopsy of only one muscle, they are not likely to to find it. This was after months and months of testing.

Usually an enzyme test called CPK if abnormal will indicate polymyositis, but my CPK was normal.

I think my disease has been coming on for years, but what finally became noticeable was my head dropped forward and I could raise it, but could not sustain it in that position. In my cousin's case, he is a golfer and by the 9th fairway, he could not control his legs. He would have to manually lift his legs to walk. I have had leg problems since a left knee replacement, when the muscles did not cooperate in the required physical therapy and after extended and vigorous therapy they still did not cooperate. My inability to walk has declined ever since. I still walk, but with a cane and very carefully.

I have lost about 35 pounds since last Autumn. I have the appetite of a small child. some of this I do not mind at all.

My hands are affected especially between the thumb and forefinger, but also up the arm to the elbow. I drop things more readily all day long-very frustrating. My cousin had problems with his hands as well.

I cannot raising things above my head very readily; such as a small pot to a pot rack.

I understand your concern. When my two kids were small I was diagnosed with Thyroid Cancer. It was encapsulated, so they plucked it out and I had no further treatment except a blood test once a year and a pill once a day. But my first concern upon hearing the diagnosis, was what will happen to my kids, if something happens to me.

I hope this helps. If you would like to add me to your friend list, that would be alright with me.

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Hello. I have polymyositis and was diagnosed in 1996.
Diagnosis came with a muscle biopsy, and CPK levels.
I also had an MRI. I began finding it difficult to raise my
arms and get up from a sitting position without holding onto something. I am 52 and my main problems now are walking slowly and with a limp, not being able to bend over and get back up due to weak
core muscles, and having weakness in my legs and arms. I still manage to work. This a a very rare disease.
I am on imuran and methotrexate. I can not take and refuse to take predisone due to the side effects.
If you are diagnosed with this , it effects everyone
differently. I tend to fall a lot due to weak legs.
Find a support group and stay positive.

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Hey dcarlo, If you don't mind me asking about your hands and fingers...Cause i have been having trouble with just the right hand just the fingers, thumb, pointer and middle finger. They go numb for no reason and stay that way for hours. Why not the whole hand or all the fingers? Any Clue? Thanks for sharing

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My hand problems have changed since I was diagnosed last year. I had the biopsies on February 27, 2009 and I met with the doctor who gave me the diagnosis on March 13, 2009-a day I will never forget. I have been on Prednisone since April, 2009 and in recent weeks I have been on Imuran to help me get off of Prednisone. I was tapered from Prednisone easily until I hit a dose below 20 mg. At first I was on 60 mgs. daily. We hoped that eventually my body would adjust to the lower doses without adding another medication, but that did not happen.

My hands were weak in the beginning. I was always dropping things and could not use my hands for heavy objects at all. I could not put dishes in my kitchen cabinets as the cabinets were over my head and my hands would not allow the weight. This has improved with time.

On both hands, especially my right hand, my neurologist tested the fingers by asking me to resist his trying to squeeze the fingers together. I could not resist his squeezing the fingers hardly at all. This has improved with time. If I overdid the muscles in my hands, the following would occur for a long time, I would get cramping in the hands and I had to wear hand braces to help the hands. At times the muscles in the hands would cause the fingers to seize up in odd positions and I could pry them into the proper position, but that was extremely painful to do. Eventually the muscles would relax and go in to a proper position, but the seizing or cramping was extremely painful. Even though I have to use a pain medication for daily chronic migraines, the pain in the hands, when it occurred, was still extremely painful. That has improved in time, as well. I have to really wear out those muscles now for the cramping to start again. It does not happen as frequently as before. I have noticed, though, that if I put pressure on the underside of my wrist, I would get some adverse symptoms. I have not held my hands in that position for very long, so the full blown cramping has not occurred recently.

I noticed that the thumb and forefinger were the most problematic in the beginning. I thought that they may have been the weakest, but now I am not sure. I noticed that when I tried to use the thumb and forefinger the grasp an object, the cramping would start. That has improved with time. I am not sure that those fingers were the only problem as when the neurologist asked me to resist his squeezing of all the fingers in the hands, I could not resist the squeezing in either hand, especially the right hand. I am right-handed. This has improved with time.

I think the improvement was occurring because of the Prednisone and I acquired a little rubber ball, just big enough to fit in my palm and practiced squeezing it to strength the muscles in my hands.

I have a love/hate relationship with Prednisone. I am told it is the gold standard for treatment of Polymyositis and it is responsible for these and other improvements in my condition, but not without side-effects. I resisted going on Prednisone, but from the day I received the diagnosis and roughly about a month later when I started on Prednisone, I felt so very lousy, that I went on Prednisone. It will be a year later on this month that I have been on it at various doses. I have been in physical therapy on and off during this past year as well.

I hope this has answered your question. Please feel free to contact me again if you have further concerns. I was told that only 5 people in million get our disease. I hope they find out the reason why we have it and will find a cure.

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Hi, DECARL0
I read your expererance with PM. I was diagonesed about a month ago and have been getting test done constantly. I am getting biopsy on the 8th but the dr. didn't say anything about taking three samples. My cpk was high and in one month I lost 4" in my thighs. My legs are very weak and it's getting hard to walk. I have alot of hand/arm issues because I have Madelung's Bone Deformity. The pain I am in from this disease is beyond my comprehension. Nothing takes the pain away and this is an everyday issue. Now you talked about your arm issues not raising your arms up and the deal with your thumb and finger. You also mention the cramping and fingers getting stuck. This is exactly what happens to me but this is from the madelung's disease. So far I have been to the neurologist, went for mri of neck. It's hard to hold my neck up. I was then sent to lung dr. He tested me and said I have a paralized diaphram. I'll be getting a scope done soon. Also a colonoscopy. I've already had breast cancer but the dr said it's possible to get breast, colon, and or lung cancer. While all these test are going on I won't have complete results for at least a month or so. But I would like to know if you had to get all these things done? I have fibromyalgia so with all of these things going on at the same time I don't know what to make of the PM. I can't take prednizone so what will they be able to give me? I have so many rare disease that I am beside myself. Also have you lost muscle in your arms? Between my wrist and elbow my skin is just haning. This has come on me so fast it's hard to deal. Thanks for any input!

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I was told that a biopsy of three muscles was unusual, but my doctor wanted three muscles biopsied as PM shows up in patches in muscles and even in the same muscle a patch may not show the inflammation, but other places in the muscle may have the inflammation. Most doctors will only biopsy one muscle however. In my case all three muscles were involved, but not to the same degree. My CPK has always been normal or very close to normal. Usually a high CPK will be an indication of PM, but that was not so in my case. Each of us is different and we respond to treatment I had a lot of the same tests that you are saying you had or now are having including a MRI of every inch of my body.differently as well. I do not think I lost muscle, but my muscles were weak. At first I was loosing lots of weight, but now I have gained most of it back, due to Prednisone. A side-effect of Prednisone is weight gain. PM can cause weight loss in some people. We are all different. I can't say that enough times. We all will have different symptoms and different side-effects from the medication. No drug is without side-effects.

I had a lot of the tests you are having or have had including a MRI of every inch of my body and lung testing showing my diaphragm was weak as were my respiratory muscles and many other muscles as well, including my leg muscles and my harm/hand muscles and my core muscles. These have all improved with Prednisone. I still walk abnormally, but my legs are pretty beat up in addition to the muscle weakness caused by PM.

I did not have much pain with this, but I have been on pain medication due to chronic daily migraines for a longer period of time than this PM thing. Prednisone helps with pain too.

For people who cannot take Prednisone, it is best to ask a Rheumatologist about this, but others have told me that they have been put on Methotrexate (sp) or IMURAN or Rituxin. Your doctor would know best what to prescribe due to your other conditions. I have only told you what others have told me and I am no expert in this awful disease.

Most people have this disease suddenly appear. Except for the head drop which occurred sometime in the Autumn of 2008, I think this has been lurking in my body for some time before the head drop.

I also had my heart checked out by a bacteriologist as the heart is a muscle. Thankfully the heart ass strong.

I do not remember all the tests that were done before the diagnosis. there were many and they were all inconclusive, but each gave a little bit of information which eventually lead the doctors to a conclusion. the biopsy clinched the deal.

Let me know how you make out when all the tests are in. Everyone when first diagnosed are scared and confused. If you have a computer available to use, do a lot of your own research. You know your body better than anyone and the research you do will help you and your doctors. Do not expect that your doctors will know everything you need them to know as we have rare diseases and many doctors will never have seen PM in their practices or have heard of it since medical school. Ask questions, lots of them. If you like most everybody forget some of the questions you wanted to ask the doctor, write them down before hand so that when you go to an office visit with a doctor you will be prepared.

Best of luck to you. Remember if I can help you further just ask.

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Correction. My heart was checked out by a cardiologist and it is strong. Typos, sorry.

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Thanks dcarlo, for the info! I have been doing some research about this condition. You are so right saying we know our bodies better than anyone else. I have had so much going on in the past ten years I am so overwhelmed. I don't know how some people can get several rare diseases in one life time. Will be getting biopsy on wed. from my arm. Thursday cat scan xrays to find out about my breathing problems. Since the dr. says I have a paralized diaphram I have no idea what they will do with me. Went to internist and they have me schueled for a scope to look down in my stomach. He said he will take a biopsy of the small intestine. Thinks maybe diaphram has pushed up intp the lung area. Hope to talk to you again, Thanks!

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