I have not been diagnosed with EDS. The only EDS symptom I have is bruising easily. I have tiny vessels in my fingers pop all the time even without an obvious injury. I was diagnosed in December with POTS. I also feel that my head is too heavy for my neck, and often use my hands to hold up my head. My husband has been so good to me, massaging my shoulders, neck and back for me. Just last night I woke up with a migraine due to the tight muscles in my shoulder and neck. I took some meds, but would not have been able to get it to calm down without the skilled massage from my husband. I even commented to him that when I lay on my right side, I cannot let my left (top) arm rest in front of me because it seems to cut off my circulation and causes more neck/shoulder/headache pain. For years I’ve slept with a rather flat pillow that I fold one edge so there is support under my neck. This helps me to cope with a headache and sometimes, I even put heat on the base of my neck. My plan is to go buy a cervical collar and try that tonight. My PCP has been terrific in helping me figure out what works.
I’m on Midodrine, Mestinon, Florinef, & Low Dose Naltrexone.