Hi @curtj ...
My second response. I am having the same exact pain so am soooo sorry and very interested in your finding answers.
I did try Mayo, but since mine is all connected to my spine, they just looked at my old MRIs and CT and said I'm not that bad, just find a local doctor and refused me an appointment.
Since I never had any pain problems before this, there has to be an answer.
I've researched a lot, but seems the longer you go, the more doctors respond with " may never be explained, live with it! "..
My idea, if you can question your docs.
Several conditions cause severe pain and damage if not treated. Myelitis, fungal, and shingles. All can be invisible, but are treatable. It seems they don't get treated until they have caused paralysis, or spine damage and can be seen on an MRI. Why they wait for severe damage to treat these , I don't understand. They must exist before they become a huge clump in your spine. You did say you had spinal fluid tested, so not sure what they tested for. They all seem to have a similar treatment. Kind of a flushing out of your system with IVs and meds. Maybe this treatment isn't covered by insurance unless they are seen on MRI to prove damage being done. I would give every last penny of my savings to try this for my pain.
I'm praying for answers for you soon. Please let me know if you find a good doctor willing to keep looking.
Seems like if there's a treatment to reverse paralysis, these treatments may reset your system s nerves somehow.
Good luck and thank you for sharing.