Welcome my twin. Seriously. We share a lot of the same symptoms. My back sounds like yours but is a train wreck when you see the lumbar and cervical MRI. I was diagnosed last August after I self referred to Dr Francomano. My PCP told me I didn’t have the eyes for EDS. Huh? Per Dr F I do have grey sclera though. Guess she wanted me to have blue? Anyway, per my picking on DrD, myself, and a friend of DrD’s in DrFrancomano’s office about all the tall women there and “what was that stereotype about EDS and tall women?” DrFrancomano replied, “only one subtype. Only one subtype.”. I was feeling short at 5’10” in the waiting room but there are lots of bendies who are not tall.
Anyway, welcome. You are definitely in the right place. You sound like you have EDS, possibly some mast cell issues as well, and those headaches sound an awful lot like high CSF pressure headaches. Try sleeping in a soft collar at night and see if you notice less headache when you wake up. I know it makes a huge difference for me. Raising the head of the bed a few inches can help a lot too.