Hypermobility Dysautonomia Hell

The reality of living inside an Autistic body with hEDS, dysautonomia, and MCAS

Last night was one of those nights where everything went wrong at once.

The joint pain was excruciating. Bones grinding. Joints popping in and out while I was lying completely still. I could feel the blood coursing through my veins, my arteries throbbing, a burning sensation radiating through my entire body.

I put my fingers on my wrist and felt the pulsating sensation of my pulse, trying to figure out if I was having a significantly more severe medical experience.

The simplest movement of changing my wrist or my ankle positioning sent shocks down my entire body.

It sounds unimaginable when you try to explain this to people. I can feel the dysfunction in my gut, my intestines, my stomach, in my arteries and my veins. I can sense when blood is pooling, when my body isn’t circulating the way it should. That heaviness felt fucking excruciating.

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Then came the heart palpitations. Then the feeling I was about to faint. I grabbed my blood pressure cuff. 140 to 150 over 70 to 80. Heart rate of 120. For the next 20 minutes I sat there taking my blood pressure over and over, convinced I was having a heart attack or a stroke.

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The trigger?

I’d just spent two days visiting my dad in Florida. 95 degrees every single day. Add in air travel, the stress of a complicated medical appointment, and you have all the ingredients for a hypermobility EDS and dysautonomia flare. I can feel it reverberating through my entire body at a cellular level. Every organ. Every ligament. Every joint. All at once. While simultaneously knowing that my autonomic nervous system is not doing what it’s supposed to do.

Am I dying?

Then comes the mental spiral: am I dying or am I overreacting? A lifetime of medical gaslighting will do that to you. Being told your symptoms were anxiety, panic, trauma. You start to question your own body even when it’s actively failing you.

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And as someone who already deals with chronic severe insomnia, of course I don’t sleep a single second after having this type of reaction and flare. Dooming me the next day to move through my world in a stage of brain fog and disorientation

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My wife could tell something was wrong. She always can.

I’m 39 years old and I feel like I’m 90. I’ve felt this way my entire life. I just didn’t have language for it until recently. And here’s what nobody tells you about finally getting answers: awareness intensifies everything. Now I know what’s coming. I know the triggers. I know the names. I build in as many preventative measures as humanly possible. And I still can’t always stop it.

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I’m not writing this for pity. I’m writing it because so many of us are living inside bodies like this, navigating hEDS, dysautonomia, MCAS, and more, mostly invisible, mostly dismissed, mostly alone in the flare at 2am wondering whether to go to the ER or try to just breathe through it.

Living like this is not only chronically exhausting, but it is constantly anxiety provoking and overwhelming. The propensity for unyielding stress is palpable.

You deserve to be believed. Your symptoms are real. And you are not alone in this.