I've complaining for years about fatigue, low blood pressure (tunnel vision, needing to lay down if I stand too fast), and hyper sensitive skin. I was diagnosed with first depression and then bipolar without psychotic features. Medications for that never helped, and I've always needed double the dose of anesthetic for most procedures. I also had a fun party trick of bending in all kinds of weird ways, fitting into seemingly impossibly small spots. I sprained my ankle almost a year ago now, and using crutches caused my shoulder to chronically sublux and I spiraled down into worsening pain. I finally had an RNP I knew on social media tell me to get tested for Ehlers Danlos Syndrome. My old GP told me "joints just don't do that" and wouldn't do any more tests, telling me to just live with it. The rheumatologist didn't think I had it, and diagnosed me with fibromyalgia and an old name for type 3 EDS. He gave me a steroid pack for the pain. I went to the ER for pain the next week. They gave me morphine and a steroid, and I was back again when the morphine wore off, this time refusing steroids. Apparently steroids are terrible for people with EDS. I now have an appointment with an expert in September to finally settle if that is what is happening with my body.
Does anyone else here have EDS or stories about finding a diagnosis? Are you still trying to get one? How do you deal with clueless doctors?