Myositis, Fibromyalgia, UCTD, Extremely confused
I am wondering if anyone is in a similar position to me and can offer any help,advice.
After 12 long years of trying to find out what is wrong with me, i was told last February i have undifferentiated connective tissue disease (Similar to lupus) I was put on all sorts of drugs which have done absolutely nothing. I had a follow-up in November 2022 and was told i now have a form of myositis as well as fibromyalgia. It was not explained to me well at all and i have basically been told to carry on with the drugs, Taper of my opiods, that i will start hydrotherapy and not to worry as i can try another drug. I don't understand "what a form of myositis" is as from my understanding there are 3 different types. Dermatomyositis, Polymyositis and Body Inclusion Myositis, surely i would have 1 of these three?
I have told my consultant time and time again that this is becoming unbearable, the drugs are doing nothing and i would like to try another drug. I have even gone as far as trying to find a specialist in Myositis (to which i can go private in London) i don't see why i should have to do this but im running out of options. As you can imagine, i am feeling rather fed up and feel like i am constantly being fobbed off. My consultant is amazing at what he does, i just dont feel i am listened to.
I am wondering if anyone else has had a similar experience to this, what drugs you take, if they work etc?
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