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To start with i'm unhappy about something else!

Just read the last reply - and I just want to say don't give up hope! I was 21 when I was diagnosed, i too tried to claim some benefits when I was really poorly from the social security and was too turned down. I think with an illness like this you need to almost will yourself to get better. I was VERY ill but also VERY determined that it wasn't going to beat me and I cetainly didn't want to take the steroids all of my life. I know that dermatomyositis can have varying after-affects. Some people recover, some have lasting effects. But I think you stand a better chance if you will yourself to get better. After all its an auto-immune illness, so in effect it is our own bodys attacking us. I still get very minor flare ups, and my strength isn't 100%, but i'm ok. I've copied and pasted my story from another thread I posted on, so that you don't think this illness is all bad.


I was diagnosed with dermatomyositis in December 2001. My GP misdiagnosed me 3 times, i finally saw another doctor who referred me to a rheumatologist. My symptoms came on gradually over a space of 2 months before I was diagnosed. It started with a rash on my elbows which spread up my arms, my fingers started getting purpley nodules on them, i started getting really achy backs, my arms got weaker and weaker - first change was finding it difficult opening doors - progressed to me being unable to brush my hair, do up my bra, or hold a knife and fork. I had tightness and aches in my fingers, my thigh muscles were very weak, i got breathless really easy and my body temperature was high. I also had the butterfly rash over my nose, my eyelids were also affected and i had a pink disc shape on my forehead. I felt so weak and tired. I was admitted to hospital where I had LOADS of tests done on me over a period of weeks (including muscle biopsy, skin biopsy, blood tests etc). My enzymes were also coming back normal, but the specialist told me I had all of the classic physical symptoms of dermatomyositis. My MRI scan showed the typical discolouration of my thigh muscles that you get with dermatomyositis. I was released from hospital without treatment, but by my follow-up appointment the following month I was a lot worse. I could hardly put one foot infront of the other, and I was also developing swallowing problems. My specialist put me on 20mg of prednisolone which were gradually reduced over time. The dermatomyositis settled with the steroids after about 7 months. I then took the prednisolone at a low dose to maintain my health. After 2 years of steroids I then came off them completely. I now haven't taken steroids for 2 years and I have no real symptoms of the illness. The specialist has told me that it may keep recurring or it might have been a one-off, there is no way of knowing. I get VERY mild flare-ups every now and then, but up until now at least, i've not had to re-medicate, it has always settled itself down.

Good luck to everyone else who has it x
I should also add, the doctors didn't envisage me coming off the medication as quickly as I did. When my dermatomyositis was at its peak i had specialists from round the country coming to examine me, to see the typical signs of the condition, because it is fairly rare. I also had an entourage of student doctors at every appointment I had with my specialist! When I came off the steroids and was 90% myself again my specialist was really pleased and also amazed at the speed of my recovery, because the dermatomyositis had been so bad. Hope you make a good a recovery as you possibly can. Although with dermatomyositis we all know it can reccur, I know if mine recccurs I will fight it mentally just as much as I fought it the last time.

Good luck again! x





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