This sounds terrible! I am so sorry. The pain is bad enough then coupled with the lack of sleep which is the quickest way to break down a person. ( Sleep deprivation is the first thing they do to torture someone in a POW camp).
Just after reading your post a few times I am wondering if it is like your primary said, like phantom. We hear of people having a limb amputated and they still feel pain in that limb. You have certainly tried everything imaginable to get help. I wonder if you might get some relief by positive mental imagery. Before I sound like a real kook go to Amazon Prime and google the documentary called “Heal”. Watch it a couple or more times. Let’s talk. I have been diagnosed with Poly myalgia rheumatica in June. I still cannot get out of pain so after watching this movie/documentary I started doing the positive mental imagery. Now I just started so I-cannot tell if I have benefited from it yet. I also bought a book on Amazon called “ The Power of Your Subconscious Mind” by Joseph Murphy. It is less than $6.00. It supports

the belief that our minds are powerful and can alter the reality ( like pain).
I am a registered nurse and had to quit working four years ago with shortness of breath and fatigue. I still am unable to work and do about 3-5 hours of research reading scientific articles every day and still cannot get free of pain. I am going a New Kingdom (holistic clinic) Tuesday to see if the can help me. They have many offices but I will be going to the Burnsville clinic. I will let you know how things go. They might be able to help both of us. Wouldn’t that be wonderful? In the meantime, I will be praying for you daily as I believe in miracles. Hang in there. I will do some searching around on your issue and see what I can come up with. God bless!