HI
Originally I was thought to have lupus, but tested negative. I do have Sjrogens, and see a great Rheumy. I hope you have a good doctor, it makes a huge difference IMHO. Your SS was diagnosed simply through bloodwork? Or have you had biopsies done or gland testing? I thought, I might be wrong, that as the only way to confirm.
I have a lot of dryness, skin, glands, etc. This causes quite a bit of soreness, and have testing done every few months, to make sure that it stays where it is.
I also am on butyoudontlooksick.com, and it is a very good website, with great people like here.