Lmst

Its starting to get warmer out and my body is hating it. This winter was fun while it lasted in the sense of cool weather so im able to do more without passing out. My #POTS is already starting to kick my butt with the small temp increase we've gotten. Guess im going to have to go back to being accessed all the time and doing fluids everyday so I can do really anything besides being horizontal. Hopefully my meds my specialist gave me can make a difference too. Otherwise now that its warmer ill be horizontal and staying indoors doing nothing. I also have at least another month for physical therapy to help me understand my body better with my #hEDS Guess its gonna be a lot of hand held gaming and reading for a while

In der #Praxis habe ich den Satz „Das kann nicht sein!“ gestrichen. Erkrankungen wie #MECFS, #hEDS, #HIT, #MCAS, #MCS, #FQAD, #PoTS und #SFN haben mich rasch eines besseren belehrt!

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

One hand holding another hand in a supportive way

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!
My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my role as caregiver in the same way I approach my day job leading social science research: reading the literature, carefully observing her condition, and developing hypotheses about her conditions and how they might be treated. I now have more than 7 years of longitudinal observation—a wealth of data—but no easy way to share with the medical research community the hypotheses these observations have engendered and my ideas about how to productively structure future research to accelerate progress toward treatments for her and others like her.
Read more here>>

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

Introduction
Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are relatively common and disabling multisystem disorders that share overlapping features, including post-infectious onset and similar clinical manifestations such as brain fog, fatigue, muscle pain, and dysautonomia with orthostatic intolerance. These similarities suggest that Long COVID and ME/CFS may share common pathophysiological mechanisms, though the underlying mechanisms remain poorly understood, partly due to the difficulty in quantifying many of the symptoms.

Materials and methods
This retrospective study evaluated Long COVID and pre-COVID ME/CFS patients who completed autonomic testing between 2018 and 2023 at the Brigham and Women’s Faulkner Hospital Autonomic Laboratory. The evaluations included autonomic tests (Valsalva maneuver, deep breathing, tilt-table test, and sudomotor function) with capnography and transcranial Doppler monitoring of cerebral blood flow velocity (CBFv) in the middle cerebral artery, neuropathic assessment through skin biopsies for small fiber neuropathy (SFN), invasive cardiopulmonary exercise testing (ICPET), and laboratory analyses covering metabolic, inflammatory, autoimmune, and hormonal profiles.

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

#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

Ma main droite de profil, je plie mes doigts par la première phalange (en partant de la main) mais le reste est plat. De profil on dirait une forme très carré

Même main et même angle, mais doigts arrondis. Comme si j'essayais de faire un rond avec ma main, ou la lettre C à l'envers

Following up with tags: I'm trying to learn more about intimacy with #heds, #hypermobility, and #disability more broadly. Any and all resources appreciated!

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

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

Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy).

#eds #hsd #heds #marfan

The image depicts a simple line drawing of a person sleeping in bed, lying on their side. One leg is extended straight, while the other is bent and drawn up toward the chest. The arms are tucked close to the body, with hands curled inward in a "T-rex" pose. The figure appears relaxed and cozy

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

Today I learnt the term Postprandial hypotension, which is a drop in blood pressure after eating (up to 2 hours). I have experienced this so many times but never knew the name. I get dizzy, light headed, feel like I will faint.
For me it is related to #Dysautomnia and #hypermobileEhlersDanlosSyndrome #hEDS more common in #Neurodivergent people

@autistics
@actuallyadhd