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[liveonthesun]

i saw the eds specialist yesterday. it was a really good appointment: she confirmed a a lot of things i had suspected and pointed out some other things i hadn't even realized were connected. apparently i exhibit a lot of sign of dysautonomia, even though i've never struggled with dizziness and fainting spells? she's pioneering the care and treatment of people with EDS in a lot of ways, and you can tell she takes her responsibility as a specialist very seriously. i'll stick my full summary behind a cut:


okay so the TL;DR of the appointment is: it is definitely EDS, either hEDS or cEDS, which will only be determined by genetic testing.

she wants me to start with adding electrolytes to everything i drink, so i gotta find an electorlyte packet thingy that i like. apparently i have a lot of symptoms of dysautonomia even though i've never had fainting or dizzy spells? but she said a lot of fatigue might be from that and drinking lots of electrolytes has helped a lot of her patients with fatigue problems. she gave me some other tips, too, like drinking ice cold water as soon as i wake up to help get my blood circulation going in the morning to help with brain fog.

she wants me to see an EDS-specific PT to see if we can't get my joints stabilized without it exhausting me. also, she said swimming is great, which i already knew, it's just again the exhaustion thing and having to always schedule naps afterwards. i'm hoping this means he'll start with relaxation techniques before getting into exercises. i was already thinking about this and then knockforaloop sent me this insta post, which i was already thinking about the idea of going to pt for the 5? 6??? time? and hoping that since i now have a referral to an EDS trained PT, i'll get to start with just regular dry needling or massage therapy before moving into exercises. so it was very encouraging to see this and know that it's a known practice to start with relaxation as the first step in PT.

also, she confirmed that float tanks are great for muscle relaxation and i've wanted to try one of those for AAAAAGES, it's just $$$$$, but now i have an excuse to spend that money if i ever have it, which is a good feeling.

if PT and electrolytes don't make enough of a difference there are some meds that have shown to help with joint pain and muscle relaxation in people with EDS. one is a med that is usually used to treat opioid addiction, but at very low-doses, it's shown to help with joint pain and fatigue in EDS patients. the other is a very low dose of a med used to treat muscle spasms in people with parkinson's.

talked a bit about B and she agrees with me about keeping him out of sports like soccer and basketball and sticking with gymnastics and swimming. she also said biological males with EDS don't present pain and fatigue symptoms nearly as much as biological females do since they have naturally higher bone density and muscle mass. also because they can't get pregnant, ie, a thing that makes EDS significantly worse! a lot of afab people with EDS don't realize it until after they've had a kid. so. the most important thing to keep in mind with b is preventing joint injuries since they'll be more damaging for him in the long-run. so no contact sports.

i also learned an absolutely horrifying fact about EDS and brains that i'm gonna rot13 it:

vs nsgre gelvat rirelguvat nobir vz fgvyy abg frrvat n qvssrerapr va zl sngvthr, v fubhyq trg n pregnva xvaq bs ZEV op fbzrgvzrf gur pbaarpgvir gvffhr gung ubyqf lbhe oenva va cynpr vf jrnx rabhtu gung vg yvxr. pnhfrf lbhe oenva gb fyvc qbja? whfg n yvggyr ovg? naq vg pna pnhfr zvabe pbtavgvir vzcnvezrag. vg pna nyfb pnhfr gur oenva gb chg zber cerffher ba lbhe arpx naq fcvar.

yznbbbbbbb


i love being an alive human being who exists in a body.

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[cassie_faith]

*big hugs*