This episode of the #BendyBodiesPodcast is by far the most comprehensive look at the lower body challenges people like me who have #EDS/#HSD face in keeping ourselves upright.

The advice I wish I’d gotten 20 years ago? You knees hurt because your hips and your ankles are off. Lo and behold, that has indeed been the culprit all along.

https://www.bendybodiespodcast.com/73-understanding-lower-extremity-pain-with-pradeep-chopra-md/

#Hypermobility #HypermobileEDS #ZebraStrong #TogetherWeDazzle

My deepest sympathies to the loved ones of #StephanieAston, whose far-too-soon passing illuminates how #WomensPain and #InvisibleIllness are dismissed by medical professionals the world around.

https://www.nzherald.co.nz/nz/stephanie-aston-death-eds-sufferers-call-for-change-after-doctors-accused-woman-of-faking-illness/VX4Q6CAWRVH25I6OCKGQ4KTW4M/

While I have a less lethal form of #EDS than Aston, I have experienced firsthand the shock, surprise, and denial that my symptoms elicit from providers. Without greater awareness about this rare disorder, more women will suffer and die.

#WomensHealth #hEDS #Hypermobility

fuck, kroppa ilmoitti että nyt muuten loppuu tämä riehuminen. polvessa on subluksaatio (nivelen osittainen paikoiltaan meno) jota en saa loksautettua takaisin paikoilleen.

olis tässä vielä ollut pyykkien laittelua ja keittiön siivousta mutta eipä sit kun ei kärsi seistä yhtään. #HMS #EDS

@ciechom @dramypsyd @GothAndy @actuallyautistic It's actually common for people with #EhlersDanlosSyndrome, #JointHypermobilitySyndrome, and other #ConnectiveTissue disorders. And #autism is 7 times more likely for people with #EDS. My guess is that the association between autism and #POTS is due to their mutual comorbidity with EDS.

@Moonbeam @niamhgarvey @setmeravelles I haven't been diagnosed, but my GP agrees it's likely that I have #EhlersDanlos too. I am diagnosed #autistic, though.

Did you know that people with #EDS are 7 times as likely to be autistic and 5 times as likely to have #ADHD!?

I was so surprised when I learned that my weird body and my weird brain were connected like that. In hindsight it makes perfect sense though.

For the last year or two I've been becoming more and more certain that long covid was related to POTS. I was diagnosed with POTS about a decade ago (along with Ehlers Danlos Syndrome) after many years of me saying something was wrong with me and doctors saying they couldn't find anything. I know this struggle well and it's the same struggle I've seen those with long covid symptoms go through. The medical community has been drastically ignoring those of us with this because they said it was so uncommon -- it's not. Digging deeper I have felt, since my diagnosis, that research into EDS and POTS can possibly unlock so many clues about other people who have other conditions - simply, there's a lot to learn about the human body inside POTS.

https://www.yahoo.com/news/condition-called-pots-rose-covid-185615559.html

#POTS #PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlos #Covid #LongCovid #dysautonomia

Just reminded myself that Jessica Kellgren-Fozard exists on youtube, so having a watch of some of her videos that I've missed.

Here's a useful one for me and anybody else with a #ChronicIllness (especially ones that drain your energy)

https://www.youtube.com/watch?v=DUCaBqeLg9Q

#MECFS #EDS #ChronicFatigue #ChronicPain #ChronicMigraine #Migraine #NEISVoid

Me too, little fox, me too.

#NEISVoid #MECFS #ChronicIllness #ChronicPain #ChronicFatigue #EDS #POTS #Fibro

@urbanchaos Being a long- virus- dealer- with before Covid, I appreciate my moss garden so much as a miniature forest I can access and enjoy (when it's warm enough to go out to see it). #Mosstodon & #Lichensubscribe allows me to do this even on days when I can't get outdoors onto the land.

#MECFS #EDS #LongCovid

Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention? | CNN

#EhlersDanlosSyndrome #EDS #Hypermobility #Disability

https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html

I have developed an intimate awareness of my craniocervical junction
#EDS #skull #alignment

@CynthiaAdinig My first wrist #subluxation was trying to open a Dijon mustard jar. Since then, mustard jars have been on my #nemesis list. The list expands every year. These foes are wily and can circumvent many assistive devices and power tools. Be on the lookout!!

#EDS #hypermobility

@Drahko People with #EDS are 7 times as likely to be #autistic and 5 times as likely to have #ADHD. At least that's what the stats say in a certain northern European nation where well-maintained health records are accessible to research and white people abound.

#Disabled #ChronicIllness #Spoonie #EhlersDanlos #EDS

I’m a disabled caretaker of a (more) disabled partner, and very isolated because quarantine never really ended for us - just eased up slightly after we got vaccinated.

I’m visiting with my family right now, and it’s making me realize how overwhelmed I am on a daily basis. I feel like I’m letting out a breath that I’ve held in for years. It’s amazing what even a little bit of logistical help can do.

Let's see how this goes -

Hey y'all, I'm Charlotte. Loved the twitter community so I hope it can continue on some sort of platform - twitter ain't quite dead yet :)

I'm a huge nerd, studying #softwareengineering in #tech. Of course I love #doctorwho , #greysanatomy and #station19. I loooove a good #book so you'll always catch me reading. I have a huge passion for #medicine, specifically #neuroscience and #pychology and looking at how the mind interacts with #hypermobility and #EDS

@Enbybookwyrm Interesting aside: #Autism and #ADHD are both linked to #EhlersDanlos. Having #EDS means a 5 fold increase in the chances of ADHD and a 7 fold increase in the chances of autism. Blew my mind to discover my body's weirdness and my mind's weirdness were both manifestations of the same underlying pattern.

Would #EDS collagen differences effect organs, nerves, or brain structure?
#sciencedon #scicomm #sciencequestions #scienceq #ehlersdanlos

Alrighty, an #introduction but make it ###
#queer #trans #nonbinary #xenic #t4t #weird #psychonaut #embodiment #chaote #psychology #student #dbt #dissolvebinaries #disabled #adhd #hypermobile #eds #powerlifting #hulahoop #bouldering #tarot #enm #relationshipanarchist #escooter #reading #solarpunk #green #XR #resist #recovery #mindfulness #compassion #neurodiverse #writing #esoteric #quantum #curious #dogstho #opshopsgivemelife

I've dabbled in a lot of different crafts; the last one was watercolor, but I also #draw, #sew, #write (obviously) and #read. I also have #EDS and #LongCovid, so I have limited spoons. I don't know what else to say, and I know I'm forgetting stuff, but if I remember later, I'll post again!

Feel free to say hi. I'll follow back, unless you don't have anything in your profile or very few posts. I'm pretty protective of what I see/deal with, to preserve my spoons. But I'm also fun, I guess?

Hihi, new server! An #Introduction

Lluvi (LOO-vee)
pronouns: xe/em/their

Loc: UTC-5 | 1-410

Currently: modularly #knitting a #Golgari Findbroker capelet + cardigan #MtG

On Hiatus: #DnD5e #Ravnica campaign

Last: practical #sound effects for #Baltimore Rock Opera Society's "Love & Roar" #BROS

Next: Watching #DesertBus for Hope #DB2022, #Dimension20 Neverafter

Commonly: #FountainPens #Ephemera

50%: #Tea

Dump Stat: CON (#MECFS aka 'long-not-Covid', #EDS, #POTS, #Migraine)

#LFG