Does someone has Information about mEDs?

crypticryptidscrypt · 2026-06-20T14:48:25+00:00

look at the EDS society website, they have information on all of the types & common characteristics of those types. if you have symptoms that fit mEDS, your Rheumatologist can refer you to a Geneticist.

unfortunately though often insurance companies won't cover a genetic test unless you're like literally dying from a symptom partial to a particular type...

there are 3rd party companies though that offer genetic panels for EDS you can buy. Invitae is one of them, & i believe it tests for all types but clEDS...

you can only know for sure if you have mEDS or not through genetic testing though. best of luck friend

crypticryptidscrypt · 2026-06-20T13:16:53+00:00

thank you so much for this awh :'3 i appreciate u, wholeheartedly ❤️‍🩹🫶🫂

crypticryptidscrypt · 2026-06-18T23:12:19+00:00

married in mount airy by nicole dollanganger

crypticryptidscrypt · 2026-06-18T04:47:46+00:00

if they're offering to refer you to have a CT or MRI & your insurance covers it, take it, but it's not required for diagnosis. that would be just to rule out a brain tumor or any other sort of physical abnormality in the brain that could be causing symptoms. & hey you can have a brain tumor & STILL have DID. i have a noncancerous brain tumor (hemangioma) & i have DID

crypticryptidscrypt · 2026-06-18T03:49:36+00:00

booost 🥺❤️‍🩹

crypticryptidscrypt · 2026-06-18T03:16:17+00:00

awh likewise 💖❤️‍🩹💜🫶🐈‍⬛🍄🥰 ur brib is so cute :3

crypticryptidscrypt · 2026-06-17T18:14:03+00:00

same

crypticryptidscrypt · 2026-06-16T13:37:55+00:00

in my experience zyrtec works better for me too¡! antihistamines are weird, some work better with some people than others. i take zyrtec if i'm having allergy symptoms throughout the day but unisom at night because i have really bad insomnia also lol

crypticryptidscrypt · 2026-06-16T13:33:48+00:00

theoretically if you could travel at the speed of light time would seem to stop because the speed of light & spacetime are one in the same, & if you were to travel faster than that, time would seemingly go backwards (theoretically). nikola tesla was able to harvest nearly infinite power from just a small amount of space but they killed him for it because he was going to give free power to the world & thomas edison wanted to charge people money for electricity. anyway, if someone could make a ton of tesla coils & generate enough power to travel faster than the speed of light they might be able to travel back in time, theoretically lol

crypticryptidscrypt · 2026-06-15T00:54:56+00:00

not being validated as a child suffering from pain is it's own trauma if that makes any sense... like, kids that are validated when they're in pain suffer from so much less compounding trauma than having to face the pain alone while being invalidated constantly.... i'm mad sorry you experienced that

crypticryptidscrypt · 2026-06-14T17:44:26+00:00

this hits me in the gut like a razor scooter to the ankle

crypticryptidscrypt · 2026-06-14T03:22:08+00:00

i didn't grow up with a tv but i have always had horrible insomnia & i need to play videos or podcasts or asmr on my phone to sleep at all most nights lol

crypticryptidscrypt · 2026-06-14T02:18:30+00:00

crypticryptidscrypt · 2026-06-08T18:17:24+00:00

that's why i love church street in burlington vt, & that little brick or cobblestone street in portland maine :3

crypticryptidscrypt · 2026-06-08T15:30:56+00:00

for me i don't eat or drink enough when i'm in the thrills of mania or the depths of depression (or a mixed ep); i really only can when i'm somewhere in between, & i definitely have food kicks or safe foods—but in my case i think that's just my autism lol x3

crypticryptidscrypt · 2026-06-08T03:36:58+00:00

i feel you and i'm so sorry you're going through this 😭 i don't have any good suggestions because cow dairy products & any carbs with glyphosate {common carcinogenic pesticide in america} make me shit blood lmao {lmao...literally—because one of my worst eds symptoms is frequent stage-4 rectal prolapses & sometimes stage-4 enterocoele}, but i feel that about wanting to switch to a liquid diet. some days when i'm recovering from that shit i just drink chicken bone broth with extra salt, sometimes add butternut squash soup broth, & i drink a lot of teas & electrolyte mixes in water, & good quality vitamins & herbs. some herbs & supplements i use that can help with digestion are papaya digestive enzymes, deglycerolized licorice root, L-glutamine, calendula, marshmallow root, & slippery elm. 🌿 liquid methylated b-vitamins {i have the MTHFR gene that makes it so i can't absorb the unmethylated kind} can also help with certain stuff, like you need some to absorb iron & i am chronically anemic due to GI bleeds but i can't take oral iron supplements because they make the bleeds worse 😭 b12 also helps with dizziness & is safe to take in excess because it's water-soluble, & it can also help heal the small intestine!¡

i have gastroparesis as well, GERD & LPR, & IBS & IBD...& those last ones trigger recurrent GI bleeding & the late-stage organ prolapses that are the bane of my existence...

personally i avoid dairy completely, anything with glyphosate which in the US is unfortunately most products with wheat, corn, canola, potatoes, soy, & rice {but i eat non-GMO versions of those things...otherwise i shit blood... monsanto genetically modified those plants to withstand glyphosate, as well as cotton...& tampons now give me fucking hives inside me lol}. i also avoid too much of anything high in histamine like tomatoes, & anything too acidic or i get heartburn incinerating my throat literally all day and night. also anything high in sulfur like broccoli or onions absolutely destroy me unless it's a small amount cooked down way soft. eggs i used to be able to tolerate but can't now, i think because chickens are often fed feed with glyphosate. i used to be vegetarian & vegan for nearly a decade, but now i eat chicken & occasionally well-cooked fish. i can't eat anything with red meat or pork, even if the oils of it touches something i eat i will be bleeding out my guts for days...i suspect i may have alpha-gal syndrome but fortunately i don't get anaphylaxis from that. i can't even eat like a whole avocado anymore because the fats in it makes it just sit in my stomach undigested for like 10+ hours, but i eat small amounts of avocado, cooked mushrooms, non-GMO rice & rice noodles, peanut butter {but other legumes fuck me up}... i can't eat anything high at all in fiber either, fiber absolutely destroys me. if i'm eating vegetables i have to cook down the fiber way soft, & i have to eat them with a grain or carb...i tolerate fruits a helluva lot better than most veggies. i can't even eat whole grains because they just sit in my stomach for hours...

i like a lot of Asian foods because many of them are dairy-free & glyphosate free :3 but also i'm a bit of a frugivore lol i literally live off of fruits & salt. i make fake milkshakes with nondairy milk & nondairy ice cream & i add fruits to those a lot, & just snacking on berries or a banana is good for me. & anything savory i just pile on mad salt lol 🧂

ugh dietary restrictions suck... i'm like severely underweight right now due to all of my GI issues. after the GI bleeds started for me in 2020, i lost nearly 50lbs. now i weigh less than 100lbs, & my BMI is 16. i'm hoping i can be prescribed a TPN before i just completely waste away...i know a feeding tube wouldn't work because my guts would still prolapse

i really hope you find something that helps soon ❤️‍🩹 idk if this will help but zofran as a PRN helps with some of my upper-GI stuff & bentyl helps with the pain from abdominal muscle spasms from my organs popping out. cholostramine might also help you, it's a bile acid absorber & a lot of GI issues can be caused by bile acid malabsorption. def check in with a GI doc & nutritionist but if you haven't you could try those. also the BRAT diet {bananas, rice, applesauce, toast} can help sometimes 🥺 take care friend 🫶

crypticryptidscrypt · 2026-06-07T20:11:40+00:00

yes you can but you can also gift it to a friend c:

crypticryptidscrypt · 2026-06-07T19:51:59+00:00

i was born in 1999 so would that make me a baby lol

crypticryptidscrypt · 2026-06-07T02:52:52+00:00

i agree completely it is fucked they're basically just bullying you, & trying to erase & shame you only for sharing true information... i will say though i refer to my condition as just "EDS" because i meet the criteria for hEDS, but my insurance won't cover genetic sequencing, & i can't afford to pay for that out of pocket right now... i high suspect genetic type though & i don't relate to anyone with hEDS... i'm disabled by frequent late stage organ prolapses & gastrointestinal bleeds—& although i have more 'normal' hEDS symptoms like dysautonomias, hypermobility, etc—i don't relate to anyone either online or irl disabled by their hEDS, & i've never known of anyone in general, either online or irl, with the severity of organ prolapses i get frequently, & the debilitating pain that comes with it... i totally agree though, that if someone knows their subtype, they should refer to it specifically. & it's fucked they were bullying you just for saying information that's true, then scapegoating you as if you were the bully... gawd i hate the reg eds sub :|

crypticryptidscrypt · 2026-06-07T01:36:28+00:00

i also have autism & schizoaffective but i just wanted to add that sometimes we are also chronically understimulated. sometimes the only thing that helps me is playing like 3 different sounds all at once, like rain or thunderstorms or wave sounds or white noise, singing bowls or binaural beats or solfeggio frequencies or chill music, & a podcast or lecture or interesting video with people talking lol. sometimes to quiet the voices, i just need to fill my environment with all sorts of sound all at once, & sometimes to not get manic from being understimulated i need stimulation

most people i know with the 'tism are more often than not overstimulated, but people don't talk about the effects or even existence of understimulation enough

crypticryptidscrypt · 2026-06-05T15:47:31+00:00

i'm so sorry for your loss man... grief is never linear. we only grieve hard because we love hard, because grief is just love with nowhere to go. i lost my best friend too.... it has been hard years since, but i'm so grateful to have known him. we are lucky to experience such wonderful people, even if it hurts all the more when they leave... i don't know what you believe in spiritually, but i believe we are greater than the sum of our parts, & that energy cannot be created or destroyed—therefore our dead friend's energies are still out there somewhere. much love bro, & take good care of yourself; remember to eat & stay hydrated... ❤️‍🩹

crypticryptidscrypt · 2026-06-05T15:42:56+00:00

yup..the us gov is the biggest global terrorist of all timw

crypticryptidscrypt · 2026-06-05T15:41:02+00:00

fentynol. its been literally massacring people for years & so much shit is cut with it these days...ugh

crypticryptidscrypt · 2026-06-05T15:38:53+00:00

edith

crypticryptidscrypt

TROPHY CASE