Anyway, I'm just gonna go ahead and thread about my experiences with it, because it's hard to describe accurately in general terms.

But this has been one of the biggest factors that has prevented me from doing physio/strength-building exercises over the years.
It resembles Delayed Onset Muscle Soreness, which is a common and well-known phenomenon, in that it's highly localized, and involves aching and loss of muscle strength in a particular muscle group, about 24-48 hours after exercising that muscle group.
What I've never been sure about is whether the magnitude of what I experience is "normal."

Because all resources on DOMS are just like "hurting's normal but if it hurts too much you're working too hard and it shouldn't like...immobilize you or anything."
And it does immobilize me. It feels more or less like having a severe intramuscular bruise (but unlike a bruise it usually dissipates after 24-48 hours).

But the question is, am I just super sensitive to this kind of pain, or is this an abnormal level of pain?
I suspect it probably is abnormal, and I suspect it's mast cell related for a few reasons.
It has improved since I've started on daily antihistamines and mast cell stabilizers. Now it only happens when I deliberately exercise a muscle group, rather than just by...carrying a bag of groceries.
It is known that histamine is implicated in *some* way in "normal" DOMS (even though they haven't quite figured out exactly how).

ncbi.nlm.nih.gov/pmc/articles/P…
I also tend to experience other MCAS flare symptoms when I'm experiencing DOMS (flushing, that thing where your breath feels too hot, sore throat, migraine) though that could just be my mast cells being triggered by the pain, or by other aspects of the physical exertion.
But anyway, for these reasons, I suspect this is probably actually a fairly common MCAS symptom, even though it never gets talked about as such.
And it's incredibly fucking frustrating that there's essentially no research on what causes it or how to treat it because the blanket assumption is just that "if it's that bad, stop overdoing it you weird gym dork"
[medical bs]

And meanwhile as an MCAS patient you get told you're sick because you're just a lazy slob and you'll feel better if you exercise.

And when you're like, "okay but after I exercise it literally feels like I've been severely beaten" they're just like, "lol ok liar"
So like, which the fuck is it??

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More from @alexhaagaard

2 Apr
This appointment is going to go SO well Screenshot of a section fro...
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[medical bullshit]

For #TransDayOfVisibility, I want to talk a little about medical transitioning with medical trauma.

I've got medical PTSD from a whole slew of stuff, ranging from medical assault to literally 3 decades of gaslighting me about my embodied reality...
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6 Feb
We’re doing social model discourse tonight so here’s some stuff to know:

a) the social model, as originally formulated, explicitly defined disability as the oppression that is experienced by those whose bodies/minds are *perceived* as deviant...
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Winter’s awesome because literally every time I walk the dog I end up wanting to cry out of exasperation and pain because everything is so goddamn inaccessible #NEISvoid
I just got stuck on a patch of black ice for about five minutes because these assholes who can afford a $500,000 house apparently can’t afford a snow shovel and sand.
Then I got stuck at an intersection because the pedestrian button stops working in subzero temps and the lights won’t change at night without it. So I had to cross the other way and jump a curb cut that’s hazardous when it’s not covered in snow, to try the opposite button.
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13 Dec 20
Pretty sure @bennessb has talked about this before, but I’ve been thinking a lot lately about how symptomatic (descriptive) diagnoses do very different things than etiological (mechanistic) diagnoses, and how rarely that difference is acknowledged in clinical practice. #NEISvoid
Symptomatic diagnoses are valid and important to accessing things like disabilities accommodations and palliative care. But they’re often treated as an endpoint in the diagnostic process, while etiological diagnoses are important in accessing effective treatment -
- especially when a single symptomatic diagnosis can result from a variety of different etiologies.

Moreover, symptomatic diagnoses are linked to the phenomenon of medically invisible disability:
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12 Dec 20
That is to say, I can only explain things in excruciating levels of detail, otherwise I end up getting confused by whatever I’m trying to explain because it requires me to flatten complexities that feel essential to a thorough understanding of what I’m trying to describe.
But neurotypicals quickly disengage from those lengthy explanations and if they do read or listen the whole thing, often end up becoming more confused than they were to start with.
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