Might try to find a geneticists. I have Ehlers Danlos. Had strange things happen to me all the time as a child and young adult that no doctors could explain. I am 56 years old and finally about 10 yrs ago I got properly diagnosed. Nothing they can do for me as in DNA. Best I can do is do my physical therapy regimen and eat good quality food. I can tell if I cheat also. I just started taking cbd oil gummies and have have excellent relief in my constant pain plus mood elevated which is a plus. Praying you find your answer so you can find a plan of what to do next.