Hello @hchristopher, welcome to Mayo Connect. We are glad you found us. I can understand your need to know what's wrong with you. That's the first step in getting a handle on treating the condition and most important. I don't think you are alone either. There is a really good video with discusses the topic:

What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose?utm_source=tedcomshare&utm_medium=email&utm_campaign=tedspread
I don't know if it's a possibility for you to make an appointment with one of the Mayo Clinic locations. Mayo Clinic is very good at diagnosing rare or complicated conditions with all their specialists at one location. There are many success stories here on Connect. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
http://mayocl.in/1mtmR63.
John