#ehlersdanlos — Public Fediverse posts

My colon is subluxing my ribs. Wonderful. Well, at least it isn't stuck between rib and hip anymore.

#ehlersDanlos #chronicallyIll

My colon is subluxing my ribs. Wonderful. Well, at least it isn't stuck between rib and hip anymore.

#ehlersDanlos #chronicallyIll

My colon is subluxing my ribs. Wonderful. Well, at least it isn't stuck between rib and hip anymore.

#ehlersDanlos #chronicallyIll

My colon is subluxing my ribs. Wonderful. Well, at least it isn't stuck between rib and hip anymore.

#ehlersDanlos #chronicallyIll

> @ChronicIllnessHumor 🔗 https://mastodon.social/users/ChronicIllnessHumor/statuses/115843049069958352
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#barometer #jointpain #jointhealth #rheumatoidarthritis #ehlersdanlos #chronicillnesshumor #chronicillnessmemes #autoimmune

Anyone have an office chair they can sit in for prolonged periods (ideally more than an hour)? Also open to non-conventional options. My current option really aggravates my lumbar pain. :meow_pain:

#hEDS #ehlersdanlos #hypermobility #disabled #disability #chronicillness #chronicpain

I'm basically a hot mess, emphasis on hot and emphasis on mess.

Really wish somebody had helped me figure this out 30 years ago.

#EDS
#hEDS
#EhlersDanlos
#hypermobility
#BendyBody
#BendyGirl
#ChronicIllness
#ChronicPain
#bendy
#ouch

2/2

I'll do another #introduction in case people are looking for their people and I'm their people.

I am a #queer #disabled #SFF #author.

I have fairly severe #EhlersDanlos / #EDS, #POTS, #migraines, #ChronicPain.

I am a #socialist #mutualaid organizer.

I enjoy #punk, #ska, #FolkPunk, and lately I'm on a #metal kick.

I do #VisualArts, #FiberArts, and #FireSpinning, though these things are somewhat dialed back because my bones suck.

Here for the people, not the numbers.

ow. #chronicpain #chronicillness #ehlersdanlos #eds #zebra #dailyprompt #prompt #walk #run #exercise #medtronics #spinal #spinalcord #spinalcordstimulator #facet #facetjoint #arthropathy #neuropathy #disability

http://invisiblymisdiagnosed.com/2025/09/13/daily-prompt-walk-or-run-9-13-25/?utm_source=mastodon&utm_medium=jetpack_social

ow. #chronicpain #chronicillness #ehlersdanlos #eds #zebra #dailyprompt #prompt #walk #run #exercise #medtronics #spinal #spinalcord #spinalcordstimulator #facet #facetjoint #arthropathy #neuropathy #disability

http://invisiblymisdiagnosed.com/2025/09/13/daily-prompt-walk-or-run-9-13-25/?utm_source=mastodon&utm_medium=jetpack_social

ow. #chronicpain #chronicillness #ehlersdanlos #eds #zebra #dailyprompt #prompt #walk #run #exercise #medtronics #spinal #spinalcord #spinalcordstimulator #facet #facetjoint #arthropathy #neuropathy #disability

http://invisiblymisdiagnosed.com/2025/09/13/daily-prompt-walk-or-run-9-13-25/?utm_source=mastodon&utm_medium=jetpack_social

ow. #chronicpain #chronicillness #ehlersdanlos #eds #zebra #dailyprompt #prompt #walk #run #exercise #medtronics #spinal #spinalcord #spinalcordstimulator #facet #facetjoint #arthropathy #neuropathy #disability

http://invisiblymisdiagnosed.com/2025/09/13/daily-prompt-walk-or-run-9-13-25/?utm_source=mastodon&utm_medium=jetpack_social

Curious about my Spinal Cord Stimulator? #chronicpain #chronicillness #raredisease #ehlers #ehlersdanlos #ehlersdanlossyndrome #blog #Writer #Spinalcord #stimulator #trial #recharge #baitandswitch #medtronic #painclinic #paindoctor #sales #uchealth #paincontrol #surgery #minisurgery #nervepain #lies

http://invisiblymisdiagnosed.com/2025/09/13/recharge-my-spinal-cord-stimulator-with-me/?utm_source=mastodon&utm_medium=jetpack_social

Curious about my Spinal Cord Stimulator? #chronicpain #chronicillness #raredisease #ehlers #ehlersdanlos #ehlersdanlossyndrome #blog #Writer #Spinalcord #stimulator #trial #recharge #baitandswitch #medtronic #painclinic #paindoctor #sales #uchealth #paincontrol #surgery #minisurgery #nervepain #lies

http://invisiblymisdiagnosed.com/2025/09/13/recharge-my-spinal-cord-stimulator-with-me/?utm_source=mastodon&utm_medium=jetpack_social

Curious about my Spinal Cord Stimulator? #chronicpain #chronicillness #raredisease #ehlers #ehlersdanlos #ehlersdanlossyndrome #blog #Writer #Spinalcord #stimulator #trial #recharge #baitandswitch #medtronic #painclinic #paindoctor #sales #uchealth #paincontrol #surgery #minisurgery #nervepain #lies

http://invisiblymisdiagnosed.com/2025/09/13/recharge-my-spinal-cord-stimulator-with-me/?utm_source=mastodon&utm_medium=jetpack_social

Well, I'm sick AGAIN. According to my calculations, I've been healthy for three weeks and two days this entire year so far. It seems I have no immune system left anymore.

I'm going to have to rethink how/if I leave the house.

I never stopped masking, btw.

#chronicillness #ehlersdanlos #ehlersdanlossyndrome

Time for a pre race #flatlay before the @dorneylake duathlon tomorrow!

Checked in, kit checked, bike checked, time to relax!

Quite nervous as I'm very new to the bike and haven't been on track with my running at all this month, the goal is to go out there and try something totally new, and hopefully have a bit of fun in the process!

#Duathlon #ThisGirlCan #ehlersdanlos #ehlersdanloswarrior #EhlersDanlosSyndrome #ehlersdanlosathletes #EDSAthlete #EDSAthletes #running #cycling #VeganRunners

Time for a pre race #flatlay before the @dorneylake duathlon tomorrow!

Checked in, kit checked, bike checked, time to relax!

Quite nervous as I'm very new to the bike and haven't been on track with my running at all this month, the goal is to go out there and try something totally new, and hopefully have a bit of fun in the process!

#Duathlon #ThisGirlCan #ehlersdanlos #ehlersdanloswarrior #EhlersDanlosSyndrome #ehlersdanlosathletes #EDSAthlete #EDSAthletes #running #cycling #VeganRunners

Time for a pre race #flatlay before the @dorneylake duathlon tomorrow!

Checked in, kit checked, bike checked, time to relax!

Quite nervous as I'm very new to the bike and haven't been on track with my running at all this month, the goal is to go out there and try something totally new, and hopefully have a bit of fun in the process!

#Duathlon #ThisGirlCan #ehlersdanlos #ehlersdanloswarrior #EhlersDanlosSyndrome #ehlersdanlosathletes #EDSAthlete #EDSAthletes #running #cycling #VeganRunners

Time for a pre race #flatlay before the @dorneylake duathlon tomorrow!

Checked in, kit checked, bike checked, time to relax!

Quite nervous as I'm very new to the bike and haven't been on track with my running at all this month, the goal is to go out there and try something totally new, and hopefully have a bit of fun in the process!

#Duathlon #ThisGirlCan #ehlersdanlos #ehlersdanloswarrior #EhlersDanlosSyndrome #ehlersdanlosathletes #EDSAthlete #EDSAthletes #running #cycling #VeganRunners

Time for a pre race #flatlay before the @dorneylake duathlon tomorrow!

Checked in, kit checked, bike checked, time to relax!

Quite nervous as I'm very new to the bike and haven't been on track with my running at all this month, the goal is to go out there and try something totally new, and hopefully have a bit of fun in the process!

#Duathlon #ThisGirlCan #ehlersdanlos #ehlersdanloswarrior #EhlersDanlosSyndrome #ehlersdanlosathletes #EDSAthlete #EDSAthletes #running #cycling #VeganRunners

Young woman with Ehlers-Danlos discusses her experience with gastroparesis -

What made my GASTROPARESIS better?!
https://youtu.be/ujtdwrGvne0?si=7dCWlo23xRCnNYdc

#Gastroparesis #vomiting #nausea #EhlersDanlos #hEDS

Hello all, time for an introduction after setting up this account on Mastodon!

Training with EDS is a new website and community focused on supporting folks who have #EhlersDanlosSyndrome and who are interested in physical training.

Whether you're just getting started or training for the olympics or anywhere in between, we're here to help you every step of the way.

Hope to see you in the community, check the links in the bio!

#EDS #EDSAthlete #EDSAthletes #TrainingWithEDS #EhlersDanlos

Hello all, time for an introduction after setting up this account on Mastodon!

Training with EDS is a new website and community focused on supporting folks who have #EhlersDanlosSyndrome and who are interested in physical training.

Whether you're just getting started or training for the olympics or anywhere in between, we're here to help you every step of the way.

Hope to see you in the community, check the links in the bio!

#EDS #EDSAthlete #EDSAthletes #TrainingWithEDS #EhlersDanlos

Hello all, time for an introduction after setting up this account on Mastodon!

Training with EDS is a new website and community focused on supporting folks who have #EhlersDanlosSyndrome and who are interested in physical training.

Whether you're just getting started or training for the olympics or anywhere in between, we're here to help you every step of the way.

Hope to see you in the community, check the links in the bio!

#EDS #EDSAthlete #EDSAthletes #TrainingWithEDS #EhlersDanlos

Hello all, time for an introduction after setting up this account on Mastodon!

Training with EDS is a new website and community focused on supporting folks who have #EhlersDanlosSyndrome and who are interested in physical training.

Whether you're just getting started or training for the olympics or anywhere in between, we're here to help you every step of the way.

Hope to see you in the community, check the links in the bio!

#EDS #EDSAthlete #EDSAthletes #TrainingWithEDS #EhlersDanlos

Hello all, time for an introduction after setting up this account on Mastodon!

Training with EDS is a new website and community focused on supporting folks who have #EhlersDanlosSyndrome and who are interested in physical training.

Whether you're just getting started or training for the olympics or anywhere in between, we're here to help you every step of the way.

Hope to see you in the community, check the links in the bio!

#EDS #EDSAthlete #EDSAthletes #TrainingWithEDS #EhlersDanlos

@trendless

an example of new onset skin stretchiness in someone with Long Covid, post includes photo:
https://twitter.com/D_Bone/status/1550692324941787136

It would be interesting to do skin biopsies and look at gene expression, protein level, and glycosylation differences between stretchy skin areas vs. non-stretchy skin.

~
edited to add:

So far I haven't seen a study like that for hEDS, EDS or Long Covid. It seems strange since it is the 1st thing I would do (and if I ever win the lottery, it would be the 1st study I would fund). If something similar has already been done then pls let me know.

#ConnectiveTissue #EhlersDanlos #hEDS #EDS #hypermobility #LongCovid

Now that this poll about hypermobility and broken bones has closed, here's some results.

57 hypermobile participants. 31.6% had broken any bones, 66.7% hadn't.

145 regularmobile participants. 31.7% had broken any bones, 68.3% hadn't.

I conclude: hypermobility probably doesn't affect whether or not you break any bones, maybe?

#poll #polls #hypermobility #hypermobile #hEDS #EDS #EhlersDanlos #EhlersDanlosSyndrome

How many bones have you broken, and are you hypermobile?

This is a poll for everyone, but I'm tagging a few specific groups to make sure I get a good sample!

#poll #polls #hypermobility #hypermobile #hEDS #EDS #EhlersDanlos #EhlersDanlosSyndrome

@spiegelmama
Your mention of tumor caught my attention. Look up Chiari malformation. Read everything about it and ignore the statements that say it only happens with trauma. There is a phenomenon that happens with EDS where brain tissue isn't strong enough to support it's self. You will *never* see this in a regular MRI machine (for EDS) because when you lay down gravity quits doing it's thing. If you get an open MRI where you sit during the scan you may find a herniation and this will block CSF flow and create, among other things, cranial pressure. For me they found a 2.5mm herniation and the cut off is 3mm so I technically don't have Chiari but we know this is the cause of many of my symptoms. Diamox ER twice a day is a godsend to me. As for my official diagnosis it's "pseudo-tumor" but knowing the cause is very helpful. #EhlersDanlos #Chiari

Curtis's humiliation came from the fact that at his graduation, the ramp to get onto the stage was too steep & #inaccessible for #WheelchairUsers.

Curtis has #EhlersDanlos syndrome, a connective tissue disorder that causes joint dislocations & severe pain, which is why he uses a #wheelchair & has a service animal.

#University #NewBrunswick #LawGrad #PeopleWithDisabilities #AccessibilityFail #AccessibilityMatters #DisabledStudents #Graduation #DisabledCanadians #DisabledVoices

Curtis's humiliation came from the fact that at his graduation, the ramp to get onto the stage was too steep & #inaccessible for #WheelchairUsers.

Curtis has #EhlersDanlos syndrome, a connective tissue disorder that causes joint dislocations & severe pain, which is why he uses a #wheelchair & has a service animal.

#University #NewBrunswick #LawGrad #PeopleWithDisabilities #AccessibilityFail #AccessibilityMatters #DisabledStudents #Graduation #DisabledCanadians #DisabledVoices

Curtis's humiliation came from the fact that at his graduation, the ramp to get onto the stage was too steep & #inaccessible for #WheelchairUsers.

Curtis has #EhlersDanlos syndrome, a connective tissue disorder that causes joint dislocations & severe pain, which is why he uses a #wheelchair & has a service animal.

#University #NewBrunswick #LawGrad #PeopleWithDisabilities #AccessibilityFail #AccessibilityMatters #DisabledStudents #Graduation #DisabledCanadians #DisabledVoices

Curtis's humiliation came from the fact that at his graduation, the ramp to get onto the stage was too steep & #inaccessible for #WheelchairUsers.

Curtis has #EhlersDanlos syndrome, a connective tissue disorder that causes joint dislocations & severe pain, which is why he uses a #wheelchair & has a service animal.

#University #NewBrunswick #LawGrad #PeopleWithDisabilities #AccessibilityFail #AccessibilityMatters #DisabledStudents #Graduation #DisabledCanadians #DisabledVoices

Hola Titánicos, cada 15 de mayo se celebra el Síndrome de Ehlers-Danlos, una enfermedad rara caracterizada por articulaciones extremadamente laxas, piel muy elástica y vasos sanguíneos que se dañan fácilmente.

Quédate y descubre como afectan estos síntomas y cuales son las causas.

https://somosdisca.es/dia-mundial-del-sindrome-de-ehlers-danlos-2024/

##SíndromedeEhlersDanlos #EhlersDanlos #salud #enfermedadesraras #enfermedad #enfermedadrara #dolor #hiperlaxitud #cuidados #visibilidad #comparte #disca #discapacidad #discapacidadorganica #discapacidadfisica #disability #disabilities #titan #titanico #titanicos #gentetitanica #somosdisca

I have also ordered CMC/MCP thumb combo splints, which I've been meaning to get for ages. I've got soft braces (which are great for giving them a break) and push metagrips (which are great for heavy work, like repotting or high-risk activities), but nothing for standard day-to-day wear on my thumbs

#EhlersDanlos #hypermobile #disability

I have reordered my finger splints from a different company. The last company I ordered from has fine stuff, but this last order has turned into such a giant 8-month+ snafu that I'm just done.

New company should ship my order within a week.

Can't wait to have properly sized splints again!

#EhlersDanlos #hypermobile #disability

It should be noted, esp by those involved in this push by #SolveME to establish a new #NIH office, that #MCAS, #POTS, and ESPECIALLY #EhlersDanlos, are NOT necessarily #infection associated. I have very real concerns for what this push to lump them under the “infection associated #ChronicIllness” umbrella could mean for #patients who have these conditions with no known #infectious cause (especially #EDS which is genetic…). Also note MS was excluded because of known #biomarkers —EDS has these 😒

No puedo sentirme más identificada #pacientes #cronicos

Via Noeliaadrover en TikTok
"Sí, soy esas dos personas el mismo día😂
Alguien se siente identificado?💖

#enfermedades #enfermedadesraras #pots #dysautonomia #ehlersdanlos #humor #migraña #colonirritable"

https://www.tiktok.com/@noeliaadrover/video/7340762673824484640?_r=1&_t=8kLSQaTy7w9

@ChariteBerlin @MDC_Berlin

Really cool! This technique - tomoelastography - measures the mechanical stiffness of tissue.

"The cerebral cortex, i.e. the outer layer of the brain consisting of gray matter, is less stiff in people affected by MS than in healthy people. The animal model showed that this is due to changes in the perineuronal networks. Perineuronal nets form a network that surrounds the neurons and that loosens when there is inflammation." (translation by Google)

I have often wondered if there are differences in perineuronal nets in people with connective tissue disorders. Could this technique detect differences in people with EDS, for example? What about its use in other parts of the body, besides the brain? Perhaps the gut?

Also, changes in PNN occur with aging. Could this technique be used to measure brain aging?

#MultipleSclerosis #EDS #EhlersDanlos #ConnectiveTissue #Aging
#Tomoelastography #PerineuronalNets

Or.... Hear me out...... A fair amount of these people actually have #EhlersDanlos and are misdiagnosed as having #hypochondria

I honestly almost had myself convinced I was a Hypochondriac before finally figuring out the things that I was experiencing *was* real and not imagined.

https://www.washingtonpost.com/nation/2023/12/25/hypochondria-illness-death-study/

ProTip: Get life insurance BEFORE things start to go downhill. 😬

#ChronicIllness #KidneyDisease #EhlersDanlos #EhlersDanlosSyndrome #POTS #Over30

Another batch of birdsite folks, so I'll do #introduction again in case they're looking for their people and I'm their people.

I am a #queer #disabled #SFF #author. She/they.

I speak #English and a little #Español, #ASL, and #Csharp and #python.

I have fairly severe #EhlersDanlos / #EDS, #POTS, #migraines, #ChronicPain.

I am a #socialist organizer with #DemSoc, most interested in #feminism and #MutualAid.

I enjoy #punk, #ska, #FolkPunk, and lately I'm on a #metal kick.

I do #VisualArts, #FiberArts, and #FireSpinning, though these things are somewhat dialed back because my bones suck.

***

I will do my best to post accessibly, including image descriptions and avoiding flashing lights.

I will CW for things like violence, nudity, and hate speech.

I will not CW for cursing, food, politics, or eye contact. If you need CWs for these things, it's okay not to follow me! I just do all of these things a lot, so you wouldn't see most of my posts anyway.

If I see you, and you make interesting original posts, I might follow you. If you post a lot of sexually graphic content, I probably won't. It's not personal.

Hope to see you around 💜

Came across this quote while doing a lot of writing and thinking about the future of this program:

"It is impossible for a zebra to be happy or healthy spending its life feeling like a failed horse." (Original author seems to be: https://twitter.com/OMGImAutisticAF/status/1564311584767463425)

#GiftedEducation #Neurodivergent #EhlersDanlos

I hope this is more than just words. I hope this project helps break down some of the barriers and helps patients, clinicians, and researchers work together.

Long Covid Alliance website:

https://longcovidalliance.org/

#LongCovid #MEcfs #POTS #Dysautonomia #MCAS #EhlersDanlos #Lyme #SolveME

Another batch of birdsite folks, so I'll do #introduction again in case they're looking for their people and I'm their people.

I am a #queer #disabled #SFF #author. She/they.

I speak #English and a little #Español, #ASL, and #Csharp and #python.

I have fairly severe #EhlersDanlos / #EDS, #POTS, #migraines, #ChronicPain.

I am a #socialist organizer with #DemSoc, most interested in #feminism and #MutualAid.

I enjoy #punk, #ska, #FolkPunk, and lately I'm on a #metal kick.

I do #VisualArts, #FiberArts, and #FireSpinning, though these things are somewhat dialed back because my bones suck.

***

I will do my best to post accessibly, including image descriptions and avoiding flashing lights.

I will CW for things like violence, nudity, and hate speech.

I will not CW for cursing, food, politics, or eye contact. If you need CWs for these things, it's okay not to follow me! I just do all of these things a lot, so you wouldn't see most of my posts anyway.

If I see you, and you make interesting original posts, I might follow you. If you post a lot of sexually graphic content, I probably won't. It's not personal.

Hope to see you around 💜

Bit of a shot in the dark but any adults with adult #AcetabularUndercoverage #HipDysplasia #Hypermobility and potential #ehlersdanlos out there who can help with chair/seat recommendations? I'm waiting to see #surgeon number two but complex medical history may prevent #arthroscopy etc. I'm an admin worker and struggling to get any guidance or support in the UK for furniture solutions that don't leave me in pain. #MedicalHelp

Today is #InternationalZebraDay and the #Zebra is the mascot for #EhlersDanlosSyndrome

Why the Zebra? https://www.ehlers-danlos.com/why-the-zebra/

Some of you know my daughter is a “Zebra” and I suspect that I am too.

#EDS #EhlersDanlos #NEISvoid #Thrive #Dazzle #NurseMastodon #MedMastodon

📣 New blog post: Cross-training with EDS to manage injuries - a few things I've picked up over the years!

https://www.ruthcheesley.co.uk/blog/health-and-fitness/cross-training-with-eds-to-manage-injuries

#injuries #EhlersDanlosSyndrome #EhlersDanlos #EDS #EDSAthletes #CrossTraining #fitness