Survey Result

[Jo-Goode]

Results from survey "Do you have pain with your Myositis?"

Yes 70

No 12

Myositis UK - Healthunlocked Yes 14 No 4

Myositis Forum UK (facebook) Yes 56 No 8

[Goldyukr]

It's very funny that a lot of websites say that myositis is not painful. I think a true study needs to be done. I don't know why they say that. Your survey shows the reality! Thank you for doing that.

[Lintilla in reply to Goldyukr]

I was going to say exactly that, and you're so right, the whole thing needs proper investigation. I have a suspicion that's what the medics are taught. It's astonishing to me that while pain from RA is routinely recognised, somehow having your muscles ripped apart is considered pain free!

I wasn't offered pain killers, and was so ill and had so many other issues to discuss with the rheumatologists that initially I didn't ask. In the end, it took a conversation with my hairdresser - who'd recently gone into remission from lymphoma herself - to suggest I ask for some! I have a lot to thank her for - she pointed out I need flu jabs (GP surgery 'forgot' me, as I was being treated by one of the London teaching hospitals) and a pneumonia jab ...