Hey @swinterasu,
I feel for you, my wife and 3 of our 4 children have EDS, while I don't feel the physical pain myself I do know that it can be devastating for those that have it as I am with them in life.
Most people and several doctors and dentists have never heard of EDS so finding good care can be difficult. Baylor College of Medicine has a study going on that is tracing the genetics of the disease and hopefully they will help uncover some of the mystery of EDS.
Please continue your story, I will keep you in my prayers.
@sultnpapper