I just found this support group. I hope you dont mind my just jumping in..
I was diagnosed with lupus 8 months ago. I was diagnosed after suffering from eye problems, I had swelling and a spontaneous corneal tear. I also had hair loss, and swelling in my joints, as well as feeling very very tired and weak.
I suffer from very dry eyes and mouth and blepharitis.
I have been on and off the usual treatments, but have just got worse and worse.
I now have swelling in my salivary glands, a LOT of swelling. The doctor (rheumy) thinks it is the lupus, but I have to go in today for an ultrasound to see if it is cancerous as apparently that is a possibility.
I have children who are still very young, and I am really worried and upset, and I really really seriously feel very unwell indeed.
I also get random fevers which the doctor doesnt seem to attribute to the lupus. Does anyone else get these?
Im sorry Im complaining, its just that noone in my family seems to understand just how unwell I feel.