DADS-M - anyone else with this diagnosis I’d love to hear from you

Hello fellow neuropathy sufferer and survivor. I have had DADS-M. Now for about 12 years. It started in my feet with burning pain, tingling, shooting pain etc. and has now progressed to excruciating pain in my back which is now treated with 70 mg of morphine per day plus medical cannabis at night before I sleep in a very low dose. The cannabis actually works better for pain than morphine. The problem is I cannot tolerate the psychoactive effects in the daytime. Because Cannabis is so long lasting in the body, the residual effect of nighttime vaping reduces my pain burden by about 50%. I know this because during a recent hospital admission, they refused to allow Cannabis. Within a few days I went into a pain crisis and my blood pressure and heart rate escalated. They couldn’t get Cannabis fast enough to reduce this pain. I am also experiencing other issues, including bowel, bladder, optic nerve damage, and problems, aspirating fluid occasionally. I have very little mobility due primarily to the pain that movement produces. IV I G was not effective. No other treatment has been offered to me. My doctors do not understand this illness , and have no time to do. The research is that would be necessary to bring them up to speed. As a consequence, being kind of a nerd myself, I have done as much research as possible with any new articles that appear that I can access. I find the hardest part of this illness is the isolation. It produces. No one understands and I have not been able to find any kind of support group. I am hoping maybe this forum will connect me with others, sending love to all those who are suffering with rare illnesses.