Hello, Zebras! My name is Gabriela and I’m a #newmember (just joined today). I live in Connecticut, on the east coast of the USA. I’ve gone over the orientation materials and feel very blessed to have found this space! I am not officially diagnosed with hEDS, but I have strong reasons to suspect I have it. I’ll admit I’m still figuring out how to go about a diagnostic process, so if anyone has suggestions (and/or can recommend care providers in the northeast of the US), I very much welcome your guidance! To name but a few of the symptoms I live with (for context, I’m 32): I’ve been hypermobile since childhood, as well as double-jointed in many places and prone to weird injuries. My muscles are often tense and joint pain flares happen often. I have had double-curve scoliosis + spinal rotation since middle school and had major bunionectomy surgery at 17 (though my bunions are still pronounced). Migraines and headaches are a regular thing for me, as are skin issues (including constant bruising and scarring but also hives, dermatitis, etc.). I’m so tired a lot of the time despite being repeatedly told I am not anemic. And generalized anxiety is a thing for me. For years, I’ve mostly gone in circles trying to figure out what’s up and how to address all of this. Yet when I recently read about hEDS, my jaw dropped to the floor. I felt like I was reading an exact description of me! I very much look forward to beginning the classes / programs here and rebuilding trust in my body. I went from being an incredible athlete in childhood + high school to now being afraid of movement, out of fear of possible injury. My hope is that I can come home to myself a bit more thanks to these resources. Thanks for reading all of this, and for any suggestions you may have about pursuing hEDS diagnosis and treatment (namely, on the east coast in the US)! Blessings, Gabriela

Posted by gdegolia at 2023-01-31 01:45:55 UTC