How to excercise with Dermatomyositis

[JoanneMinnie]

Hi, my name is Joanne. I was diagnosed with Dermatomyositis in February 2019.

I am currently on Mycophenolate and am slowly weaning off Prednisone. I am also Type 1 diabetic and have been for 41 years.

I want to ask how people exercise with this condition without being in pain for days later making it not worth it! I do a lot of walking, it’s more my tummy area and upper body.

TIA

[Jo-Goode Administrator]

Hello Joanne,

I also have DM, diagnosed 26 years ago when I was 25; in this time had 13 years remission but relapsed in 2013 and remain on treatment of IVIG.

Here's a PM/DM exercise sheet, basically it's a case of very slowly increasing the amount you do.

37fa343y5czt13hd4izqqhj1-wp...

Regards, Jo

[JoanneMinnie in reply to Jo-Goode]

Hi Jo. Many thanks for forwarding the exercise sheet, I have never seen a physiotherapist or been given any exercises to do, so will definitely give them a go. Gosh you’ve lived with this a long time!

Kind regards

Joanne

[Jo-Goode Administrator in reply to JoanneMinnie]

I never really thought about how long I had DM until I got to the 25th anniversary that coincided with my 50th, now I've just going backing to forgetting how old I am 😂

If your on facebook we have a far larger Myositis group facebook.com/groups/Myositi...

[DM0610]

When I was recovering from my DM I found that a good source of exercise help came from physiotherapists experienced in rehabilitation after sports injuries. Also good background to exercising and types of exercises was available from the Annual Conferences of the Myositis Association of USA. They are based in USA but support people all over the world with their information / talks & seminars / reviews of Research. Check out their website for details. My preferred approach to regular exercise until Covid was weekly water exercise sessions in local Nuffield Health gym. Hope this helps.

[JoanneMinnie in reply to DM0610]

Thank you DM0610. COVID has certainly put a stop to a lot of things! I will check out the website you have suggested. Many thanks

[Tinacros]

Hi are you in the uk. My ophthalmologist thinks I may have this. I’ had a really bad flare up Oct-Dec but nobody knew what it was. I think I’m being referred to dermatologist, but been told over 12 months waiting list. Hoping another glare up doesn’t happen before 😏