I have great sympathy for you.
Myself, living with pain for more than a decade now, I have only my own impression of what you go through. I pray somehow and someway some greater relief will find you.
For sleep at night I practice self-hypnosis, and if need be can do it any time. Of course I cannot have a productive or happy life asleep all the time, so even though any pain relief only mitigates it, life goes on, and I have learned to be at peace with what I know I can’t change.
I’ve a set routine for bedtime, and usually drop off within half an hour. Staying asleep is a issue. Daytime is like living with Narcolepsy you close your eyes for a few seconds to rest the burning, and your asleep from 30-60 minutes several times a day.
You need a motorized chair to get around outside the house, few places have them or are usable in. I’m basically home bound, docs and grocery store, can’t even wash my own hair any more.
National Pain Report Survey http://nationalpainreport.com/what-does-the-largest-chronic-pain-patient-survey-tell-us-8838953.html?fbclid=IwAR3Z5r6_grr_rESWn9VYUg-b872BvW5twoNUxwweOjLw9yR9g419kqwsnNU