Myositis UK

Diagnosed with Polymyostis

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.

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

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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.

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

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

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

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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

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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.

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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.

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

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

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