Hello @moms34eds and welcome to Mayo Clinic Connect. I can sense the frustration in your post and can empathize with feeling like no one understands. I am wondering if you might like to join one of the discussions specifically on EDS here to connect with members who may be able to provide their support?

- Ehlers Danlos Syndrome: Can't get diagnosed:
https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-1/
- Ehlers Danlos Syndrome (EDS) & HSD, calling all types!:
https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/
- Ehlers Danlos Syndrome - Who is the best doctor to see?:
https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/