Hello @sandpiper09, I am sorry you are in so much pain and getting very little help, empathy or understanding from your rheumatologist. I am not a medical professional and have no medical training but if possible I would try to get a second opinion. You know better than the rheumatologist what is happening to your body - you may not know why, but you can feel the pain, you know where it hurts and it's up to the doctors to come up with the diagnosis and treatment.

From what I understand from a quick search, there are many different types of Lupus. Here is further information on the types of lupus from Johns Hopkins
http://www.hopkinslupus.org/lupus-info/types-lupus/
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John