Living with Hypermobility Related Dysautonomia

I’m currently undergoing the diagnosis process for both POTS and EDS—so I don’t have anything helpful to add, but I wanted to add some solidarity since we seem to be going through something really similar ❤️ my hospital system has a section for autonomic disorders, but I think more broadly cardiology could be the starting place to look for more info?

My experience sounds extremely similar to yours, Fae. POTS is often the least of my worries, with major GI issues, chronic migraines, poor circulation and body temp control... I feel like my body's barely holding together. It's frustrating because the symptoms are so widespread and nonspecific- I'm swimming in doctors with no coordinated care.

That sounds a lot like my POTS symptoms, but everyone’s body is different!

I really don’t think I have POTS or if I do it very mild. For me it’s the gastrointestinal, low blood pressure, insane night sweating and temperature intolerance that are really big. There are some other things I experience but those are the big ones (esp low blood pressure) and I might possibly have exercise intolerance because it’s really hard to raise my heart rate with exercise and I’m relatively fit but stairs are the devil.

I was told that hypermobility commonly occurs with dysautonomia (i.e. POTS occurring with EDS). I’m not sure why— but I see my cardiologist in a few days. DM me any questions and I’ll see if I can find some answers :)