Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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Ambrosia6 06/24/2013

I was diagnosed with DM in 2009. For the last year or two I haven't had any muscle pain and the only rash I've had is a little bit on the face. I'm still taking methotrexate and hydroxycholoroquine.

But I also have a strange symptom that we haven't been able to diagnose. The rheumatologist doesn't think it is DM. My legs will suddenly give out underneath me, losing all muscle strength, and I end up on the floor. Sometimes I can get right back up. Other times my legs are too weak for me to even move, and so I stay on the floor for 15 minutes or more. Up to an hour. Occasionally my arms are affected too. Does anybody else have this symptom yet have good muscle strength most of the time? I am exercising an hour a day ... my muscle strength is very good right now. The falling does not occur in relation to exercise. Some days I don't fall at all, other days, I may fall more than once.

This symptom did start at least a year before I began having other symptoms of DM. So I really don't think it is related, but until I know what it is, that is still a possibility.

trpt1 06/24/2013

Hi Beth85. I am not a doctor. I can not give a correct diagnosis.

A neurologist is the doctor who deals with spinal cord and brain.

I will put in a prayer for you. Please keep us posted.

lexisgirl 06/24/2013

That is a mystery Beth. Is it when you first engage your muscles such as standing up or starting walking from a stand still position? Or are you walking along and all of a sudden go down?

There are times when my muscles suddenly weaken but it is usually when I try to engage them as described above. My falls are luckily few and far between but are usually brought on by something such as stepping on a pebble or something like that.

I agree with Trpt, it might be good to see a Neurologist. While it might not be related to DM, it is serious non-the-less and should be researched further.

Ambrosia6 06/25/2013

Thanks for the input & prayers.

Lexisgirl - it can happen both when I stand up or when I am already walking.

I have seen a neurologist and we are working on testing for things. She, the neurologist, still seemed to think it was a possibility that it was DM. But she's not a rheumatolgist - so I just wanted to check here to see if anyone else has this symptom. The rheumatologist does not think it is DM.

lexisgirl 06/25/2013

That is concerning Beth. I hope they are able to help you quickly.

On a side note, you can see both a Rheumy or a Neuro for Myositis. Some people see one or the other and some people see both. I have PM and I've always gone to a Neurologist.

freelee 06/26/2013

I have "fallen" 3 times this year. my leg just goes from under me. I have PM and muscle weakness and can normally get around ok but sometimes for no reason i just fall. Sound similar?
Keep us updated on what you discover please.

Ambrosia6 06/27/2013

freelee - when you have fallen, are able to get right back up or are your legs to weak, and need to rest for a few mins to recover?

deleted_user 06/27/2013

since dm is a vascular disease it would make sense that your muscles have used up all the energy they ahve, they collapse and athen it takes time to recover the energy so you can get up. when you do get up do you have normal strength to do this?? i don t fall but i do get a sensation that i need to stand tall and hold onto something, the blood rushes to the leg quad muscles and i get a bit light headed and white in the face. they used to ask me if they needed to call 911 if i over did it at safeway or grocery store. as i have gotten better that does not happen much at all now... good luck to you but i think if nothing else is found it could be the dm.

deleted_user 06/27/2013

beth, if you friendme and send me your email. i have an old survey of patieanits done by tma that has all the typical symptoms and how many folks have t hat by percentage, it made me feel so much better to see it. i am happy to send you a copy when i am back at home. IVIG today and tomorrow.

Ambrosia6 06/28/2013

Hi Shawna - we've already met via another site and you sent me that study. Thanks! I just sent you a friend request. :)

nanny1611 06/28/2013

I haven't fallen recently, thankfully, because I am unable to get up on my own. Whenever I get up from a seated position, I must stand still for a few moments before I can step forward; otherwise I would fall. And, if I've been walking in a big store, when I get into the check-out line, I must hold on to the shopping cart and rock back and forth to stay upright. Best wishes to you.

brendacaytonwhite 06/29/2013

Hello Beth. I know that you have been diagnosed with DM, but I also was falling down for no reason and the last time that I fell I couldn't get up and was taken to the hospital and diagnosed with PM, which is polymyositis, It is the same disease that you have but it involves the muscles. I am unable to walk without Prednisone. Have your neurologist check for that. We are here for you.

deleted_user 07/05/2013

Are you on a high dose of prednisone? That can cause something called steroid induced myopathy. I had it in my forearms for a little while when I was on 60 mb a day.

deleted_user 07/13/2013

I have been diagnosed with Polymyositis. What you explain it exactly what happens with me. I also had varying levels of weakness getting my legs into a car. Some days I couldn't lift leg more than a few inches other times I could get them in the car without assistance. A muscle biopsy will give you all the answers, have you discussed having one?

Ambrosia6 07/17/2013

I saw a dermatologist that specializes in auto-immune conditions last week. I asked her about the muscles and she said it doesn't sound like DM, since my muscles are healthy otherwise. She recommended seeing a neurologist, which I am already doing.

brenda - the muscle weakness did accompany my DM. The thing is that now my muscles are strong and well, blood tests come back normal and I am able to do anything a healthy person could do with their muscles.

bruce - no, I am not on prednisone at this time and haven't been for over 2 years.

I haven't had a muscle biopsy yet. I will ask the neurologist about it next time I go.

trpt1 07/19/2013

Hi Beth, I am not a doctor, but it sounds like a spinal cord issue.

I will put in a prayer that the doctor correctly diagnoses your issues and fixes the problem. Second opinions are always good too.

Keep us posted.

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