Kirsty,

Not sure where you are located, but there are many Sjogren's specialist in the U.S.

Wait until you see the Sjogren's specialist before believing that treatment is just symptomatic...it's not. There are many options for treatment...from DMARDs to steroids, to biologics.

It is quite common for autonomic symptoms to wax and wane. So if you are having these symptoms, then by all means bring it to the rheumy's attention and try to document when these happen (by taking BP and heart rate upon standing and journal results). Make notes so you can better present your case to the doctor. Showing a journal of symptoms makes things much clearer for them to see the entire picture.

Hope this information is helpful. Let me know if you have any other questions or ways that I can help you understand this disease process or how to present your case to the doctor and get their attention.