We asked our Ehlers-Danlos Society social media community, “What does your dysautonomia feel like?” We received over 100 responses…
Our community shared stories of unrelenting fatigue and debilitating brain fog. We heard about weakness, racing hearts, and frustration. An overwhelmingly common experience was the feeling of a body out of control; feeling too hot or too cold constantly—or even both at the same time.
Here’s what our community had to say: What dysautonomia feels like
I’ve long suffered from extreme temperature swings, always feeling too hot or too cold, whipping back and forth between them unless I remained very still in a constant temperature.
Searching for a hint of what causes this and suspecting it’s related to EDS, I searched for “EDS temperature sensitive unstable” and came across this article discussing several other symptoms too, like incontinence and digestive problems, which I thought were separate issues.
What ties them all together is that they are symptoms of autonomic dysregulation, a problem I didn’t think I had. But after reading this article, I can see how this additional issue contributes to my general physical instability. Continue reading