wonkly, I’m so sorry to hear that you’re in such pain. You’re a remarkable and courageous person to have accomplished so much in your life.
One poster recently gave the names of some doctors in Sydney who helped him, I think Jules has already put their names on the list:
I don’t know the Australian health care system, but maybe your GP could refer you even though these doctors are far away?
You are focused on diagnosis and the possibility of a permanent cure, and are skeptical of symptomatic treatment. But chronic pain can permanently alter the brain and nervous system, so leaving the pain completely untreated while you search for a diagnosis could make you worse off in the long run. If so, is it really worth it to have the symptoms in their “unadulterated” form for diagnostic purposes? You said you have suffered for two years and have become thoroughly familiar with your symptoms, so perhaps that’s enough information for the right doctor (whenever you find him/her) to figure out what is wrong with you.
Also, if you respond to the tegratol, that fact is itself a data point that could help towards a diagnosis–it means your condition is neuropathic in nature.
While you search for a diagnosis, do you have local meetup groups or support groups for people with chronic pain? I was struck by what you said about feeling like you have something so rare the doctors can’t identify it, I think many people with chronic conditions feel that way. If you can meet people in the same or a similar boat, it could help you feel less alone. And you could make friends who could accompany you to appointments, etc.
My best thoughts are with you. I am sure you will get answers about your condition. Don’t give up!