I cant find anyone with this, without systemic involvement, even though I was ANA positive, and have a lot of the other symptoms of systemic lupus. I eventually got told by rheumy that I actually had fibromyalgia as well as cutaneous lupus. The main symptoms of the cutaneous side of things is my allergy to ultraviolet light. It was first thought I had polymorphic light eruption via a skin biopsy, but the UV chamber used to help try to 'desensitise' my skin, only made things worse! This miss diagnosis has made my skin worse than ever, and it now constantly stings if I am outside, and I get a nasty, itchy raised rash all over my upper body, but mainly on my face. I feel like a caged animal sometimes, always indoors with the curtains closed. Summer depresses me, and makes everything feel worse, so I do love it when it rains, hehe! I think I am the only one that does, lol!
I really would love to talk to people who understand, and people that care. And of course advice would be warmly welcomed :0)