Walking distances with Myositis

[Breester]

Hi everyone, as yet I am undiagnosed but have classic symptoms of IBM or Polymyositis. I am 63 & this happened to me overnight late June this year. For many years though I have had episodic extreme tiredness, headache & nausea particularly after physical exertion. Supermarkets did me in & I could never understand why my legs could take me no further. Yet complete rest, day later feel ok again. Now my legs, arms & hands seize up. At 4:30 am I eat small bun & take 20mg Prednisone. By time I awake say 8-8:30, stiffening is easing but all limbs, hands feel odd. The hands sometimes collapse altogether. This I have never experienced until the last 3 months. Funnily enough as the day goes on, although sort of wobbly on legs, by 7pm feel most like old self physically.

My observation therefore being inactive asleep, the muscles & body shut down somehow & become rigid. Cortisone starts everything up again & moving throughout the day keeps everything to a certain extent, ticking over.

Next week I see a rheumatologist for first time. I guess a diagnosis will come. My question to the doctor & the community here, which I fear will not be a straight forward answer, is can I resume my 2-3 mile walks again, or will this worsen my condition?

Thank you in advance for anyone’s advice about walking.

[MEW53]

Hi Brewster,

The same thing happened to me at 61, I woke up one morning and couldn't get out of bed. I had been tired for quite a few years and my hands had started curling up a few months prior to this episode, I thought it was Arthritis. I managed to get to work locally and never went back to work after that 5 years ago. Rest when you can and leave the walks for a while until after you see the rheumatologist .

Ask the rheumatologist lots of questions and take a notepad in with you, it’ll help cos you are bound to forget something. It took a long time to get diagnosed with polymyositis with a Scleroderma overlap but I take a cocktail of drugs and I get good care from my rheumatologist and I pace myself cos I get very tired. There’s lots I can’t do but try and remain positive.

Good luck😀

[Breester in reply to MEW53]

Thanks for your reply MEW53 and your encouragement. Hope this community can help with suggestions & treatments. And the experts get quickly to a diagnosis.