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?
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 :)
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.
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.
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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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?
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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision