Do you suffer pain with your Myositis? - Myositis UK

Myositis UK

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Do you suffer pain with your Myositis?

Jo-Goode profile imageJo-GoodeAdministrator67 Voters

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19 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

Les15 profile image
Les15 in reply to 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

angus50 profile image
angus50 in reply to RajSangha

I am like you painkillers 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.

I have had the condition for about 20 years and can report that I do not suffer any pain from my IBM. In order for the survey to be meaningful shouldn’t respondents indicate whether they have IBM or some other condition? It would also be helpful if contributors provided this information with other comments on the website

Too many autoimmune diseases and they are calling it overlap syndrome. Started 36 years ago as fibromyalgia. The vasculitis PMR/GCA was 7 years ago and now they think polymyositis. I have been on prednisone for 2 1/2 years and was on Actemra for two years but that biologic gave me dividiculitis. After taken of. The Orencia My pain became unbearable and next possible diagnosis is polymyositis and waiting for some labs to come back. In any event one doc wants to add Orencia biologic shots. Another one said I would feel better on Retuxin but that frightens me for two reasons.

I show that I once had hepatitis. That drug can infrequently cause a deadly brain disease. Actually the Orencia is an issue with past Hep b, but I see a U of Miami doc that is doing more tests to do with the past Hep b and I think she said the information from this test will allow us to know how safe to go on the Orencia.

I also have Primary Immune Deficiency and receive IVIG in a 6 hr. monthly infusion. I know that in a higher dose it’s used for polymyositis.

Anyone with similar issues, please contact me. Thanks❤️

Polymyositis 2 plus years dxn . My rheumatologist keeps telling me Myositis doesn’t cause pain yet looking up meaning of Myositis definition says inflammatory muscle wasting disease and my thigh and tops of arms are agony I don’t have much faith in my rheumatologist when hasn’t walked in my shoes for just one day —

No pain, just lost of muscle and muscle strength, not great when you have 18 mth old Labrador that pulls like a donkey on steroids : - )