Living with Ehlers-Danlos is literally a pain! I've learned that I have to live each day like a cork - yup, a cork. I float along with the pain and don't fight it as much - I find this helps to live with the pain that is a daily walk with Ehlers-Danlos (a sense of humour helps too as does chocolate!!!) Hang in there! It can seem like a very frustrating process to find an excellent doctor, but once you do, they can help you navigate this life SO much easier! Surround yourself with excellent friends - they make a huge difference too.