Thank you so much for all of your responses.
I am in my 50s and just piecing this EDS puzzle all together myself. It's been a long journey.
I thought I lucked out because Mayo takes my insurance but when I spoke with the receptionist she indicated there are no EDS doctors in AZ. Then I got hopeful again when I saw some of the posts saying there are indeed AZ doctors. If anyone could give me a specific doctor's name that does treat EDS I would be grateful. I don't fault the receptionist because if there is no EDS department it would be hard to know where to direct me. We did search in the categories of connective tissue disorder, pain management, and physical health (or something like that) and she got the error messages "no EDS doctors" but I am thinking if I had the specific name of the doctor then perhaps I could make an appointment after all!

Here is more about my story in case anyone can relate, thank you to all of you that have shared yours - it is so wonderful to not feel so alone in this. I've been to countless doctors, specialists, physical therapists, naturalists, neurologists, diagnostic testing, emergency rooms and never knew exactly what I had.

I have a positive biopsy for small fiber neuropathy. My EMGs of legs and arms always some back "severe nerve damage", I'm hypermobile, have gastro issues, have had pelvic floor disorder. I've had surgeries to address my hip pain (not helpful). I've also had orthostatic blood pressure and pain all of my life. When I get sick I often have difficulty with a racing heart. Diagnosed fibromyalgia, complex regional pain syndrome, there was a speculation of Guillain Barre after I had Bell's Palsy but I don't think it stuck. I've had every literally pain procedure (cortisone shots, nerve blocks, nerve ablations, etc.). I get about 1 a month. I went down the pain pill road and do not care to do that again. My neck is bothering me the most right now. All of EDS sounds like me. I don't know if I should try to find a specialist, I appreciate the info about AZ. It doesn't seem there is a typical treatment plan and may be a waste of time and money.