I have been recently diagnosed with SLE. It's all been a bit of a shock as I used to be really active and I am struggling to get the idea that I can't do things in my head. I have been to a rheumatologist which prescribed my drugs and literally sent me on my way. He also suggested I read a book to help explain. Quite frankly I find the book frightening and am now even more confused!!
Every day I seem to be in pain from my joints, some being excruciating. I wonder how much pain to expect and do you just learn to live with it?? I also have constant fevers, is that normal??
I have found this site in the hope someone can give me some real answers. I'm not sure where else to turn. When I talk to people who don't have it they seem to know very little and don't really understand what I am going through.
I have been put on steroids and hydro chloroquine which I started a month ago. My specialist said I would feel so much better, but I haven't. In fact the joint pain is even worse. Is that normal? My doctor is only in surgery twice a week and so I'm finding it difficult to catch up with her.
So many questions and yet I feel like there is no one to ask. I would really appreciate some replies feeling very confused and isolated right now.