@kris1130 your description sounds just awful. How do you handle it away from home? Have you ever gone to a comprehensive medical center or a university medical center? The doctors are usually ‘a cut above’, do research and continue their education. When the local doctors couldn’t figure out what I had, my husband took me to a university hospital in Denver. The drive is long especially during rush hour! Comprehensive med centers are usually nearer to big cities and also have excellent doctors.
Find out what’s near and give them a call! And do let me know if you are able to find out anything!