Another big moment today I deleted my LinkedIn, not because of anything Microsoft has done although there’s plenty of reasons…

It’s an acceptance that particular chapter in our life has passed (work)

#Fibromyalgia #hEDS

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!

Screenshot from February 2026 AMMES newsletter

https://www.annfammed.org/content/23/6/570

#chronicillness #Spoonie #MEcfs #CFS #POTS #LongCovid #hEDS #CCI @mecfs @longcovid @pots

New US research that also included a #hEDS comparison group:

Shared autonomic phenotype of long COVID & myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0341278

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid #dysautonomia @mecfs @longcovid @pots

I feel like my joint #hypermobility would thank me if I could just stand KT tape on my skin    

#HEDS

Symptom: Chronic Diarrhea

https://www.illmarks.com/symptom-chronic-diarrhea/

#anxiety #art #autism #bodilyFunction #bodilyFunction #bodyHorror #bodyMapping #cfs #chronicIllness #depression #diarrhea #eds #ehlersdanlossyndrome #FunctionalGastrointestinalDisorder #gastroenterology #gastrointestinal #GI #gutBrainAxis #gutbrainAxis #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #ibs #longCovid #longcovid #mecfs #MECFSBuy #medart #medicalArt #MillionsMissing #MyalgicEncephalomyelitis #neurodivergence #PIIBS #postInfectiousIrritableBowelSyndrome #postIfectiousIrritibleBowelSyndrome #pwLC #pwme #rritableBowelSyndrome #SciArt #SciComms

The packaging on my mouthwash was so frustrating for my #hEDS that I just gave up and used an old travel bottle  

#hypermobility #disabled

Avec ma prof de sax du coup on a fini par comprendre mon soucis de dextérité
Pourquoi je lève tant les doigts et pourquoi je rate souvent les touches/clés (en dehors de ma proprioception à coucher dehors)

En fait j'ai l'hyperlaxité qui vient se mettre au milieu
Et je n'arrive pas à arrondir mes doigts

Cf photo :
Photo 1 : mes doigts naturellement
Photo 2 : je suis supposé les avoir comme ça (j'ai mis 10 ans à faire cette photo, c'est pas évident !)

Ça a un peu chafoubablé ma prof car elle avait pas tilté à quel point l'hypermobilité et hyperlaxité pouvaient avoir un impact négatif sur les postures instrumentales !

#Musique #Music #SED #hEDS

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.  

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

dear fedi folk,

does anyone here have experience with csf leaks (ideally as a result of hEDS but not necessarily)? i'm on day 12 (13?) of a devil migraine that's affected my balance and vision, worsened my POTS and tinnitus, is causing sporadic pulsatile tinnitus as well plus mega-weird pulsing pressure in my head, and is seriously messing with my brain/anxiety. plus ofc the nausea and flashes. and pain in my head and neck, which is sometimes quite severe. so i'm wondering if it's actually a migraine or not.

these symptoms aren't new-new (and i haven't had a headache-free day in literally years, migraine or "just" a headache), but they are getting worse / more frequent, and i'm getting worried.

i also don't have a doctor here bc multiple drs in this country have told me that ehlers-danlos and sjögren's and autonomic dysfunction, etc., don't exist. at all.

(i will go to urgent care if things get worse, but it's far and they'll likely just send me home, so.)

so if anyone's dealt with this and wouldn't mind comparing notes, i'd love to.

thank you!

#askFedi #hEDS #POTS