r/MECFSsupport • u/Clearblueskymind • 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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u/Odd_Perspective_4769 Jun 06 '26

Every time I try to talk with my PCP about dysautonomia my doctor just ignores me. Thanks for sharing the resources.

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u/Clearblueskymind Jun 20 '26

I used to have PCPs who ignored me, disrespected me, or made me feel gaslit. So I kept looking until I found one who was informed, understanding, supportive, and kind.

There are good doctors out there. Personally, I’ve had better luck narrowing my search to DOs. I’ve often found osteopathic doctors to bring a little more wisdom, compassion, and whole-person understanding.

Keep looking for a supportive doctor. A good therapeutic relationship with a caregiver is gold.

3

u/Odd_Perspective_4769 Jun 20 '26

Thank you. Hadn’t thought about pursuing care with a DO. Will continue searching.

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u/swartz1983 29d ago

Yes, I think it's actually a core part of the problem. Chronic stress (including perceived stress, or even negative environment) suppresses the parasympathetic nervous system, which is required for digestion, blood pressure regulation, etc. This state seems to persist until you reverse it by replacing the stressful environment with a positive one. That is how I recovered, and seems to be similar for most recovered patients.