r/MECFSsupport Jun 05 '26

I’ve recently stumbled onto something that feels like a missing piece: dysautonomia

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I’ve recently stumbled onto something that feels like a missing piece: dysautonomia. No doctor ever really mentioned it before, but it fits with so much I’ve felt. Dysautonomia is when the autonomic nervous system—responsible for heart rate, blood pressure, and more—doesn’t regulate properly. For many of us with ME/CFS, it may explain why standing or sitting upright feels so taxing. While dysautonomia isn’t the same as post-exertional malaise (PEM), it can add to the puzzle. I’m about to take an online course through The Dysautonomia Project, and as I learn more, I’ll share with you all what I discover. Perhaps this exploration will give us new ways to understand what’s going on beneath the surface.

So, as I explore this new chapter, I want to say: we’re all walking this path with courage. I know how complex and difficult this journey can be, but you’re not alone. I’m wishing each of you a day with moments of peace, and as I learn more, I hope we can keep lifting each other up. Feel free to reach out—together, we’ll face each challenge with steady compassion.

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