Polymyositis

[Flowers88]

Hi

I was diagnosed with Polymyositis 2 years ago after a muscle biopsy on my left thigh

The area where the muscle biopsy took place is still very painful so much that I can't have any one touch it. Does anyone else have this problem?

Also my feet are very painful after walking for 5 minutes

Does anyone else have this problem?

[Brychni]

Hi Flowers, 👋 my feet are also very painful, pretty much all the time but in the last 2 or 3 weeks I've had frequent episodes if not being able to walk and am taking tge day off work tomorrow to see about getting crutches from GP. 😟 The pain is just suddenly a lot worse and spreading into my calf muscles and even my knees and hips which become instantly hot with movement. I don't have myositis but an antibody for an overlap with scleroderma. I do have diagnosis of mixed connective tissue and lupus but understand almost nothing about symptoms and what's causing them.

I've been referred by rheumatology for feet but already had an ultrasound about 2 years ago which showed a huge fibroma (which can be seen without ultrasound) but also pockets of fluid. Nothing came of that appointment, no insoles or any advice about pain management just said it was because of 'underlying condition '. So I've now been referred to orthopaedic and trauma but that was a couple of months ago and still haven't heard.

Do you know what's causing your problems walking?

[Flowers88 in reply to Brychni]

Hi Brychni. I went to see a podiatrist who diagnosed plantar fascists. He told me to roll my feet over a tin can 3 times a day for 8 weeks. Hopefully it should dissappear then if not I have to buy special soles with arch supports. It's one thing after another!

[Foxy619]

HiyaApparently yesterday at QE appointment told I would be having biopsy on the left in the same place iv also been diagnosed with cervical stenosis so life is a bit of a worry at the mo as waiting to see if it's the polymisitis or IBM still not sure the difference?

I tell you what I get and it's horrible my toes go numb can happen when I walk or just when I'm in bed very very painful a bit down at the moment but il have my b12 I jections soon which gives me a pick up.

have you tried hot rub on the toes it does work for me and when I get cramps in toes.

Keep as well as you can 😊

[Campergirl76]

I have recently been diagnosed privately in London with Polymyositis after a fruitless, 3 month battle with my Health Authority. I had a muscle biopsy in my left thigh 2 weeks ago: it was on the upper level of uncomfortable with local anesthetic and took 10-15 minutes with a 1-2” scar with 4 stitches which were painlessly removed after 7 days. No pain now and healing well.

I can no longer walk easily but can “toddle” with a stick, and cannot get up steps or low chairs and I struggle getting out of bed. Of course, general fatigue, but fortunately no pain.

Big shock for me as always had robust health abd have skied for 70 years! Including heli- skiing off the Monte Rosa plateau around the Matterhorn for my 70th😊!