Can anyone tell me more about their hypermobility related dysautonomia? I recently came across a video explaining that what it was and what it was like living with it and I’ve never heard my life so accurately described. Also what kind of specialist do I seek out to find out if this is what’s happening or not?

Edema & Anasarca


Hypermobility Syndromes

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  • HeyReese


    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 :)

  • EncyclopediaFae


    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.

  • HeyReese


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

  • eunji_unnie


    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.

  • Keladry


    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?

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