Hello, I haven't read nor heard anything about the condition until today, but it sounds as if there's a wide range of symptoms. There's hope for you. Research maybe quietly being conducted in places across the globe. Maybe somehere they'll be seeking clinical trial enrollment? I queried AI and it said it found no active trials. But you can write to the lead investigators at
Patient‑led networks and research summaries pointing to ongoing biological research and investigator contacts (Baylor College of Medicine, Brigham & Women's investigators previously involved), which may lead to future recruitment opportunities. You sound like a good soul, the LORD created, provides and saves souls, you being good have no worries. My girlfriend had a traumatic spinal injury. She went from a active vibrant 30 year old to a cripple overnight, but eventually regained her ability to walk after several years of therapy and many surgeries, she had young children when she was injured, she functioned for nearly 30 additional years living with incredible pain. Yet she was prescribed massive doses of prescription pain killers including Methadone pills/liquid (20 years) and Fentanyl for 10 years. She still found value in living life even with the continuous pain and continued surgeries (she had about 11 sugeries) as her condition progressively deteriorating her abilities and was in a wheelchair for 2 years before she eventually succumbed to a infection affecting her spine, kidneys, heart and lungs and passed away three years ago. You probably should give yourself more time. If you're in pain I know factually her doctors told her she could be on Methadone for the rest of her life, even if it took her into her 80's. Look into alleviating the misery anyway possible until the condition either corrects itself or there's a trial and better ways to manage it or a cure. If you're in pain Methadone is readily available in pill form and relatively inexpensive. Its easy to say, but you"re too young and you have good ideals, there must be hope, so don't give up yet.
