I understand what you are going through for my oldest daughter (32yo) also has EDS. She looks a lot like you in that she has similar facial features, hyperdactyly, has had issues with her spine (minor at this point), trouble with her knees and other issues. Up to this point she was diagnosed with Marfan's Syndrome which is also another connective tissue disorder. She has a lot of pain though I think that it comes from fibromyalgia which many woman suffer from, such as myself. I will keep you in my prayers for the doctors to find a way to help you so that you may have a much better quality of life that has eluded you up to this point. As the Brits say, keep a stiff upper lip and soldier on knowing that people love and care for you!