Welcome to Mayo Clinic Connect @fanning ! As you can see, there are many discussions going on and many members helping other members. I’m sure that by tomorrow, you’ll have several responses. You can find another rheumatologist if you feel that the NP is inadequate. I say that because you need to have a good talk with your doctor about quality of life. Are you anywhere near a big city? Or a comprehensive medical center or university hospital? You are more likely to find the doctors you need. You can also contact
NORD. National Organization for Rare Diseases https://rarediseases.org/
GARD. Genetic and Rare Diseases organization https://rarediseases.info.nih.gov/. The websites are very similar but the organizations are not. Both of them have list of specialty doctors and will help you find one in your area. I sure hope you’ll find one. I’m also going to ask the mentor who covers pain management to get in touch