Hi “Burning” — if a doc says you have something “like EDS” it usually means you have EDS, but they don’t feel qualified to diagnose it! Did you check out the videos on the types of EDS I made for this site? They may help.
Wow, your symptoms certainly align with mast cell disease, don’t you think? One problem with some centers for mast cell disease is they are using the old criteria for “mastocytosis” and are missing about half of us! Here’s a website with some great info. The “Patient Experience letter” is worth printing out for your docs: http://www.mastocytosis.ca/ I hope it helps!
Please keep us posted, and thee are a lot of wonderful folks on this site who can help you. Big hug,