Anyone been diagnosed with polymycotis

[yorkshiregirl44]

I realise iv asked this question before but because its rare i didnt have any replies.I thought at different times someone with this condition might see it. I know there are old posts about this condiion on here but they are over a year old.

Thanks

[a_Scot]

[quote="yorkshiregirl44"] Anyone been diagnosed with polymycotis [/quote]

You mean polymyositis ... en.wikipedia.org/wiki/Polym...

I allege my syndrome includes something similar called dermatomyositis ,

but according to the "wonderful" NHS I'm in "limbo" , ( i.e. no official diagnosis ).

[yorkshiregirl44 in reply to a_Scot]

Yes i do mean that sorry..everytime i write the word i spell it wrong.

Im going to a rhumy soon, because its so rare im trying to find out what i can about it.

Whay kind of tests did you have if you dont mind me asking.

[Renu]

Hi I have polymyositis. Was diagnosed about 4 years ago alongside Lupus. Yes it is rare. I struggle to climb stairs, lift arms above shoulder level, walk, stand. My thigh muscles have really weakened with it but I go aquafit and swimming regularly and have fought very hard to fight this disease and keep fit, mobile and active. I am now in remission with meds and so am happy! I have more probs with lupus rather than the polymyositis, now that it is in remission. The treatment reversed it for me so it does work! I still struggle to stand and walk any given distance but as I have lupus flares, muscle power tends to diminish further.

Renu

[yorkshiregirl44 in reply to Renu]

Thanks for your reply, You dont realise just how rare it is until you post a question on here.

I have weakness when standing and walking which makes me feel unstable like i am using all my strength to stay upright.I also have very painful burning neck and shoulder muscles.

When i am having a flare i feel very ill, like something is surging through my body, its a horrible feeling not like flu symptoms but something else.

Im going to see a rheumy and worried because it is rare that i wont have the right tests.

Of course it could be abother condition, can you relate to what i am expereincing.

Thanks