Welcome, welcome, welcome! It's unfortunate, the pain that puts us in the same boat, but what an awesome crew we have.
I'm sorry for the pain you've been having to endute and I hope they can give it a name soon. I know I was feeling kinda nutso and started wondering if others were thinking I was making the whole deal up (yes, I know I can't make people believe me but boy, I wanted some professional to put a name to it and a test that validated it!). The test and diagnosis helped me emotionally...and physically it provided a framework for treating it.
I'm going to hope those things happen for you as well....and soon so you can get some relief.
And no matter the diagnosis, you're welcomed here!