Do you suffer pain with your Myositis?

14 Replies

  • Hi, at the moment I have sore wrists but I think this is more rheumatoid, fortunately no pain from IBM at the moment. Wighton

  • My pain is knee pain not IBM it's because I need a knee operation which can't be done because of the IBM

  • Just general muscular ache and stiffness .... I'm sure it's just related to smaller IBM muscles.

  • Upper back, shoulders, arms and knees.....where all the weak muscles are.

  • My legs are so painful especially at night. I feel as though I've run a marathon . They all shaky, painful & throbbing .

  • suffering all the time hands, knees, shoulders, calves, feet and thighs pain killers do nothing

  • Brilliant idea for a poll, Jo.

    I have DM, and when it's active, I have excruciating pain. I can feel it 'marching' down from the back of my neck, down my arms and shoulders, round my hips and down my legs. When it's unbearable, I take co-codamol , but sometimes that doesn't touch it.

    I completely identify with Tremarel's comment below - it always happens at night, and by morning I feel as though I've taken a beating. I've dreaded going to bed sometimes because of the inevitable.

    Fortunately (touch wood) the disease seems to be coming under control at last, so I hope I've finally put this behind me ...

  • I suffer no pain, just no muscle strength.


  • I have been diagnosed with polymyositis just over a year ago but was told at first it was fibromyalgia after a thigh biopsy came back it was polymyositis I now have a rash on tops of arms and neck also lots of wee pinhead red spots in various areas new also is freezing feet even with 3 pairs bed socks on mycofenolate seems to be helping after 4months but very chronic constipation and nausea I've lost ver a stone in weight but it's all muscle areas tops of arms thighs look about a 90 plus year old not nice to see .I have waited 6 months for my next appointment thank goodness it's n the 18th. April but it seemed forever to come round I have my diary all ready as these are added symptoms since I last saw rheumatologist and even then. She got a lot of my history wrong so I feel we have to fight our own corner as it's so rare a disease .Great jo for setting this up even though suffer so much yourself and give us positive outlook thankyou .Better health all myositis friends .x

  • Yes, especially when i overdo it - pain in upper arms and/or upper legs and pelvic area. Very shaky arms and legs as well.

  • Can't say I suffer pain, but stressed out from trying to get up from wheelchair/office chair/toilet and trying to stand safely in shower. I do wake up with aching legs which I'm sure would be better if I could only stretch out more!

  • I find most of my shoulder/arm pain is brought on from trying to get out of chairs, off toilets, etc. I have a shower seat I can get up from but still have to use my arms and hands to raise me.