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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angelamichelle 03/06/2014

i have a question for you all. so i am able to use 2 lb weights for arm exercises and do a 8 min mile on the elliptical BUT i cant put on my coat properly, or walk up stairs easily , or stand up without a very wide stance... I understand that the actions may use different muscles but its i can still work out the entirety of my legs and arms without struggling.. Has anything happened like this to any of you? Am i just so used to doing things this way that I'm convinced in my mind that I still have to do it this way?
I have my appt Monday to read my blood work so I'm going to ask then. FYI my emg came back normal last month :)

trpt1 03/06/2014

Hi Angelamic.., I totally understand what is happening. When muscles break down, you will have some parts of the muscle that remains strong and other parts that have weakened. This is true for all of us with this disease. You will need to see a physical therapist to determine which muscles need help. Be patient and keep in mind that some muscle take a lot of time to rebuild. Flares bring the weakness back too.

I had trouble putting on my coat when I first developed DM. My shoulder blades acted like a broken wire hanger and my coat kept sliding off and would not stay on my shoulders. Over time, my shoulders regained strength to hold a coat and my frame correctly.

It is good that you are seeing your doctor, and I am sure the doctor will be able to help with this matter. It is great that your EMG returned normal so that is good news!

Keep us posted!

angelamichelle 03/06/2014

Thank you for the reply :) it's good to hear it's 'normal'.
It's just mind boggling to me that I can run a mile and most people I know can't :x lol like always , I need to just be patient .

autumm 03/07/2014

Hi Angel. The best person to advise is a Physiotherapist. They are qualified to work the muscles in the right way and I don't think we can do it without advice. It took six months of hard work to make a difference to my knees. I now do the exercises every day and its great to walk and sleep without pain. Autumm

amberhere 03/08/2014

Hi angelamic, I can walk quite a way with my dog, and go upstairs OK but like you I can't put on my coat - really hurts - and my hands are swollen a lot - when I stand up I too have learnt to go wide - before I had real problems standing from the sofa but I have now got similar to a booster cushion which is really firm and helps me to get up. I am all for any aid that helps and makes things that bit easier.

autumm 03/08/2014

Hi Amberhere. You will be surprised how much the MTX will help especially the swollen hands when you start it and it kicks in. All the best. Autumm

angelamichelle 03/09/2014

Booster sounds like an amazing idea. :)

amberhere 03/09/2014

The booster is like a square piece of firm foam covered in material. You can also buy one in the motability shops. It is about 4 inches thick and I put it on top of the seat of the armchair. It gives you that bit extra leverage for when you get up.

amberhere 03/09/2014

Hi autumn, I am taking MTX next week - bit nervous but fingers crossed. Thanks for your comment.

autumm 03/10/2014

Hi Amberhere. Good luck with the MTX. We are all nervous of these second line drugs to start. Its amazing how you get used to it all. Don't forget to get the prescription for Folic acid as well. Autumm

angelamichelle 03/10/2014

amber - GL :)

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