Diagnosed with Polymyostis

[donnadt]

I'm still trying to get head round the idea that I even have Polymyostis. Was diagnosed last year in August & on high steroids. Trying to reduce to be pain free docs hopes for anyway, not going to plan. Aching pain 24/7 & fatigue gets the better of me. Sorry for moaning, but do feel no one understands as outside I look fully alright.

[Jan22]

Can commiserate with that , its difficult when you have pain as it becomes all consuming. here's hoping things improve . Best wishes Jan

[Jo-Goode Administrator]

Are you on other medications apart from steroids? It can be trial and error with pain medication, but it's possible to get relief with the right combination of medication.

[donnadt in reply to Jo-Goode]

Not at the moment, been on a high dosage & got to bring this down before I do the next step. Advised by doc

[Monalisa777]

What confirmed your diagnosis? If you don’t mind me asking sorry don’t want to seem rude or intrusive

[donnadt in reply to Monalisa777]

Doc confirmed after a lot of blood test & the way the steroids was working shows he was not wrong unfortunately.

[Eliotf]

Have you seen a specialist for it? Now that you have a dx find a dr. Who has treated many polymyositis. Be firm and out spoken with the dr

[Jo-Goode Administrator in reply to Eliotf]

There is a list of some of the Myositis specialists on the pinned post or I'm always happy to advise of the nearest one.

[donnadt in reply to Jo-Goode]

Would appreciate info of specialists close to aberdeen. Feel it hard to talk with friends as i look alright on the outside, even when i ache most of the day.

[donnadt in reply to Eliotf]

No, not common up hear in ABERDEEN. My doc has bee getting advise & been put to hospital quite a lot for tests.

[Jo-Goode Administrator in reply to donnadt]

Dr John McLaren from Fife has an interest in Myositis and has around 50 patients he cares for.