So disappointing to be at The Mother Ship and feel unheard. Don't know if this is helpful, but I went to the Mayo Jacksonville campus and was seen by Dr. Dacre Knight there. He heads up their Ehlers Danlos specific clinic. Incredible teams all phenomenally well versed in EDS from the OT, PT to Gyn, pelvic floor therapists, etc. It was remarkable. Dr. Knight is passionate about EDS and helping our community. He diagnosed me with hEDS and Fibromyalgia, but also ran the genetic test to rule out any of the genetic EDS varients. Lastly, he explained what was what and demystified so much of this. Ran and SNIPS test too, so now we know what meds work for me and which will be ineffective. Most important, now we know that I hyper rapid metabolize some meds that make them dangerous for me. If you can swing getting to him I really believe in him and his team. I'm 51 and have lived with this my entire life. Finally felt seen, heard, validated and supported.