Bloo (they/she) 🍓 🏳️⚧️ 🍉
Sherri Koehler (she/her)I felt so lousy yesterday that I canceled my classes for the rest of the week and admitted my wife is right.
I think I resisted label of “post-exertional malaise” because the description almost always starts with describing someone as bed bound. Since my pain is worse when I’m not moving I currently am pretty uncomfortable in bed, it’s why my sleep is disrupted.
Yes, I am all too familiar with the knowledge that many people with #hEDS also have sleep apnea. However, I have been saying for a few years now that I would like to have treatment for the advanced degeneration in several joints treated since it is very obvious that pain is waking me. Next Tuesday I finally begin the process to have a nerve block, which several providers hope will provide significant relief.
I’m also so tired of hearing “central sensitization”. Until my multiple obvious orthopedic injuries are adequately treated I don’t want to hear that phrase again, if ever. It absolutely makes some providers think there’s no reason to check for other reasons for pain.
biyokeaPour commencer par un truc intéressant : étude[1] rétrospective sur des dossiers médicaux qui cherche à évaluer la prévalence de SEDh/HSD (syndrôme d'Ehlers-Danlos type hypermobile/trouble du spectre de l'hypermobilité) chez les personnes trans/nb. Elle trouve :
- prévalence de 2.62% chez les personnes transmasc
- prévalence de 1% chez les personnes transfem
- pas de différence significative dans la prévalence vis-à-vis de la prise ou non de TH
La même étude trouve une prévalence de 0.16% chez les femmes cis et 0.04% chez les hommes cis ; ça fait presque 20 fois plus de chances d'avoir un SED chez les personnes trans (OR 18.45).
Ça recoupe quelques autres études qui montrent une prévalence importante de SEDh chez les personnes trans :
- étude[2] dans un centre médical prescrivant des TH qui trouve une prévalence de SEDh de 2.7% chez des personnes trans
- étude[3] dans un centre médical trouvant une prévalence de SED de 2.6% chez des personnes trans ayant eu une opération de transition (72% SEDh, le reste pas spécifié ; ~70% transmasc). Pas de surrisque de complications postop ou de réopérations dans ce groupe, pour principalement des mammecs, qqs orchis, et d'autres opés.
- étude[4] dans un centre pédiatrique de prise en charge du SED trouvant une prévalence de dysphorie de genre de 17% chez des ados avec un diag de SED(h)/HSD
[1] : Prevalence of Hypermobile Ehlers-Danlos Syndrome in Transgender and Gender Diverse Individuals: A Retrospective Cohort Study. Tabernacki T et al., 2025. https://doi.org/10.1177/23258292251382250
[2] : The prevalence of hypermobile Ehlers–Danlos syndrome at a gender-affirming primary care clinic. Stein T et al., 2025. https://doi.org/10.1177/20503121251315021
[3] : Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery - a single institution experience. Najafian A, 2022. https://doi.org/10.20517/2347-9264.2021.89
[4] : Gender dysphoria in adolescents with Ehlers–Danlos syndrome. Jones JT et al., 2022. https://doi.org/10.1177/20503121221146074
#EDS #hEDS #trans #hypermobility #hypermobileEhlersDanlosSyndrome #HSD
Rook 🏳️⚧️Asking your parents (who are in their 70's) to get a shower stool for their bathroom.
Not for themselves, but for when you're visiting...
#JustDisabilityThings #POTS #HypermobileEhlersDanlosSyndrome #heds
W_Dräger 🦉
Morgan ⚧️Any guitar* players on fedi with EDS or painful hypermobility? Do y'all have advice on how to cause less pain when I practice/perform? So far I've been switching sides, which seems to help with the long-term pain of always playing "right-handed," but I still end up in pain on whichever side of my neck/shoulders the fretboard was on.
*Or bass guitar, banjo, pretty much anything on a guitar strap
#askFedi #duckDuckFedi #musician #disabledMusician #guitar #hEDS #eds #hypermobility #chronicPain
Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).
An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).
Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!
The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.
Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.
I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls
Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.
*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.
starryeyesI'm really struggling with chronic pain due to my genetic disorders, am not able to afford meds, & I'm *not* okay.
If anyone can help, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $70. I hate asking for help, I feel like a jerk, but I don't have another option.
PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla
#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled
I've had enough. Time to be that bitch!
