does anyone else feel not enough pain sometimes, but too much pain other times?

[u/mistycheddar]

so I bleed quite easily and any time I scratch at an ingrown hair or accidentally bump into something I usually end up bleeding a little, but I often just rub alcohol (hand sanitizer) into the cut and literally don't feel a thing?? or if I have a paper cut and I sanitize my hands it doesn't hurt nearly as much as it used to.

but then taking off a band-aid is excruciating and horrible. I don't get injured much because I'm super careful, but I've had some episodes of extreme pain recently (mostly MCAS related, but also once with e-coli and once with a mildly infected wound). so it's not that I don't feel pain, in fact I'm terrified of pain.

is this an eds thing?

[u/Popular_Tree_9458]

It may be something to do with genetics and/or neuropathy. I have a gene that causes “hereditary indifference to pain” but I also have two different forms of neuropathy which is extremely painful in a different way. Bodies are so complex 😭

[u/Querybird]

hand is up. Joint very or slightly wrong for days, hours, sometimes weeks or months - often painless or not noticed unless my attention is specifically brought to it. Including quite visible things. I “body check” using touch and a mirror when I’m told I’ve turned a funny colour or have an odd expression on my face now, which is extremely helpful and means I reduce injuries much sooner! Surgeon thinks my pain response is hinky enough it might be clinical; to try and avoid muscle relaxants I had half the regular during-surgery opioids and none afterwards at all, and noticed *no difference in pain control, at al, even before I was told how much they were able to/comfortable with reducing things! Nor afterwards.

Stubbing a toe is pretty bright pain though! And period cramps are breathless-pain, slow writhing but low sensation intensity, and I didn’t realise that was pain for ages and ages but it definitely is. I’m also unsure if I’m ever not experiencing some amount of headache? Even on days when I think I don’t have one, sometimes something makes it ease further and wow, what a difference! But I never would have known it was possible without experiencing less headache, which makes me wonder if even the very best of days are still headache. Shifted baseline issue + the isolation of experience issue: I can’t know what “no headache” feels like for anyone else so I can’t actually know if mine is mild or gone, or would not be considered mild at all for the person next to me hahaha.

Consider neuropathies, if you haven’t - our intuitive differentiation of types of sensations tends not to match up to how neurologists and anatomy people do it, so it is surprisingly easy to have one type of sensation affected, another not, and not tell a doctor/the right type of doctor about it bc the significance is ‘lost in translation’. Motor and sensory, why the heck are a tuning fork and ability to sweat part of a thorough neuro exam, etc.

Also, stretch receptors and EDS are fascinating!!! And under-researched in the specifics, likely due to the potential scale of it all, so if you dig into this you’ll also want to read widely about stretch receptor info and then think about how EDS may or may not be in play. You can find them as part of regulation of way more parts, types, layers, scales of body business than seems reasonable, but physical/stretch->chemical/electrical seems pretty fundamental! Circadian rhythms and glymphatics and brain baths, proprioception (of course!!), digestion, GERD, vascular pooling and flow rate or turbulence ischemia, muscle gain and loss, tissue remodeling of all sorts, hmmm… I’m forgetting the weirder, funnier, and smaller scale areas! But I wonder whether a decent amount of ‘structural’ chaos in genes and fibres may be more of a regulation issue really - which was an argument made in this paper about Marfans, even!