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.
Diagnosed with Polymyostis : I'm still trying to... - Myositis UK
Diagnosed with Polymyostis
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donnadt
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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
Jo-GoodeAdministrator
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.
What confirmed your diagnosis? If you don’t mind me asking sorry don’t want to seem rude or intrusive
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
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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