Hi MollyMae,
So sorry to hear about all the pain you are in and all the difficulty over the last years. Really wish I could wave a magic wand for you...
I'm now expert, but I wanted to ask if you've seen a NM dentist and if so, what kind? There are two types, traditional and modern, and both offer differing types of treatment. In brief, the traditionalist believe TMJ issues can only be joint or muscle related. The modern ones also include malocclusion and other structural issues. These two groups are in conflict with each other and if you don't know this, it can make getting the right treatment for your specific issues very tricky. It might be a good idea for you to get a couple opinions from both sides. The traditionalists will work for some issues - but not all. I had malocclusion and tried everything the traditionalists had to offer. It worsened my condition and emptied my wallet. I was also told there were no other treatment options. Thanks goodness I paid no attention to the and found my way to the other side - I am now pain free for the first time in years, thanks to their treatment. I know your situation is really different than mine and it's hard to know what may help you, but I wanted to share this with you anyways.
Wondering if you've seen an excellent physiotherapist who specializes in orofacial/tmj issues? This may be of some help. If you have trigger points, they may be worsening pain issues and a good PT could help with this. If you are in severe muscular distress, an ULF tens machine (at home unit) may help with pain. If you are in nerve pain, there is a new treatment called Calmare that you could possibly look into. A good physio should also be able to help you with pain management through exercises, use of moist heat, etc.
Perhaps you could also ask one of the doctors on this site to weigh in on your situation. I believe there is a specific "ask a doctor" section. One doctor in specific on this site has been extremely helpful to me and gave me the name of the specialist in my area who finally helped me. I asked her for the absolute best in the province or neighbouring state - not just a decent one - and I'm so glad I did. I would have traveled if necessary but it turns out I didn't need to. If you PM me, maybe I can help you contact her.
Hoping you find some relief soon. Hang in there!