#hsd — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #hsd, aggregated by home.social.
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2025-12-4 Celebrating my 10 year physical disability* anniversary in a rather eerie way.*Known disability, it’s possible to be disabled or have infection risk factors you don’t know about.
I started this in December and only finished it last week. Crip time!
https://www.illmarks.com/2025-12-4-exactly-10-years-since-mobility-impairment-broke-same-leg/ #anatomyArt #arthritis #bodyart #bodymapping #ChronicIlllness #CripTime #crutches #disabilityart #disabilitypride #DisabilityPrideMonth #dissociation #eds #heds #hsd #hypermobility #injury #medicalart #orthopedics #posttraumaticArthritis #proprioception -
2025-12-4 Celebrating my 10 year physical disability* anniversary in a rather eerie way.*Known disability, it’s possible to be disabled or have infection risk factors you don’t know about.
I started this in December and only finished it last week. Crip time!
https://www.illmarks.com/2025-12-4-exactly-10-years-since-mobility-impairment-broke-same-leg/ #anatomyArt #arthritis #bodyart #bodymapping #ChronicIlllness #CripTime #crutches #disabilityart #disabilitypride #DisabilityPrideMonth #dissociation #eds #heds #hsd #hypermobility #injury #medicalart #orthopedics #posttraumaticArthritis #proprioception -
Die #Werkschau im Fachbereich #Design macht neugierig.
Gesellschaftsrelevante Themen sollten viel öfter so hervorragend vermittelt werden.
#Organspende #Nachhaltigkeit #Ernaehrung
#Kommunikationsdesign #HSD -
Die #Werkschau im Fachbereich #Design macht neugierig.
Gesellschaftsrelevante Themen sollten viel öfter so hervorragend vermittelt werden.
#Organspende #Nachhaltigkeit #Ernaehrung
#Kommunikationsdesign #HSD -
https://www.evshift.com/492842/wheel-e-podcast-new-tern-hsd-65-mph-e-bike-segway-xaber-more/ Wheel-E Podcast: New Tern HSD, 65 MPH ‘e-bike’, Segway Xaber, more #ebike #ElectricBikes #ElectricMotorcycles #ElectricVehicles #EV #HSD #motorcycles #mph #Podcast #segway #Tern #Wheele #XABER
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Gestalten Sie Zukunft mit uns! 🌱 An der Hochschule Düsseldorf arbeiten Sie mit jungen Menschen an Ideen für Bildung, Gesellschaft und eine lebenswerte Zukunft. Freuen Sie sich auf eine Vertretungsprofessur in Teilzeit, Lehr- und Forschungsfreiheit sowie familienorientierte Arbeitsbedingungen. Jetzt bewerben unter https://jobs.hs-duesseldorf.de/Vertretungsprofessur-Haus-Energie-und-Anlagentechnik-de-j478.html #HSD #Karriere #Wissenschaft #Düsseldorf
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Erster Erfolg fürs Schülerstudium an der HSD: Konstantin Zaika vom Comenius-Gymnasium hat seine Mathe-Prüfung im Fachbereich Medien sehr gut bestanden. 🎉 Als Jungstudent lernte er schon während der Schulzeit Hochschulluft kennen. Mehr dazu: https://medien.hs-duesseldorf.de/personen/dederichs/20260629 #HSD #Schülerstudium #Mathe #Medien
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Erster Erfolg fürs Schülerstudium an der HSD: Konstantin Zaika vom Comenius-Gymnasium hat seine Mathe-Prüfung im Fachbereich Medien sehr gut bestanden. 🎉 Als Jungstudent lernte er schon während der Schulzeit Hochschulluft kennen. Mehr dazu: https://medien.hs-duesseldorf.de/personen/dederichs/20260629 #HSD #Schülerstudium #Mathe #Medien
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Der Zehntklässler Konstantin hat die Möglichkeit des Schülerstudiums genutzt. Er hat an der Mathematik Vorlesung teilgenommen und die Klausur sehr gut bestanden. Von der Präsidentin wurde er begrüßt und bekam Sein Zeugnis durch den Prüfungsausschuss überreicht.
medien.hs-duesseldorf.de/personen/dederichs/Seiten/20260629.aspx
#HSD #Schueler #Studium
#Hochschule Düsseldorf
@hsduesseldorf -
Der Zehntklässler Konstantin hat die Möglichkeit des Schülerstudiums genutzt. Er hat an der Mathematik Vorlesung teilgenommen und die Klausur sehr gut bestanden. Von der Präsidentin wurde er begrüßt und bekam Sein Zeugnis durch den Prüfungsausschuss überreicht.
medien.hs-duesseldorf.de/personen/dederichs/Seiten/20260629.aspx
#HSD #Schueler #Studium
#Hochschule Düsseldorf
@hsduesseldorf -
Schülerinnen & Schüler können einzelne Lieblingsfächer schon vor dem Abitur an der Hochschule studieren.
Als „Jungstudierende“ lernen sie frühzeitig das Hochschulleben kennen und sparen Zeit im späteren Studium.
medien.hs-duesseldorf.de/schuelerstudium#HSD #Schueler #Studium
#Hochschule Düsseldorf
@hsduesseldorf -
Schülerinnen & Schüler können einzelne Lieblingsfächer schon vor dem Abitur an der Hochschule studieren.
Als „Jungstudierende“ lernen sie frühzeitig das Hochschulleben kennen und sparen Zeit im späteren Studium.
medien.hs-duesseldorf.de/schuelerstudium#HSD #Schueler #Studium
#Hochschule Düsseldorf
@hsduesseldorf -
Today is #MEAwarenessDay!
The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
The study found 20% #pwME studied had #hEDS and 50% had #HSD
This study was prior to the 2026 reclassification merging HSD and hEDS
Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%
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Today is #MEAwarenessDay!
The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
The study found 20% #pwME studied had #hEDS and 50% had #HSD
This study was prior to the 2026 reclassification merging HSD and hEDS
Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%
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Hier, mes deux épaules étaient subluxées. J'ai passé la journée entre 7-8 de douleur avec une nausée carabinée à cause de celle-ci. C'est là où je maudis le fait qu'un de mes traitements pour l'encéphalomyélite myalgique empêche de prendre des anti-douleurs de palier 2.
C'est toujours compliqué de cumuler des pathologies car elles ne sont pas forcément compatibles entre elles : par exemple, mon HSD a besoin de nombreuses séances de kiné mais mon EM fait que ça me créé des malaises post effort ce qui dégrade mon état général. Il y a souvent un choix à faire ce que les soignants ne comprennent pas forcément.
#hsd #emsfc -
Hier, mes deux épaules étaient subluxées. J'ai passé la journée entre 7-8 de douleur avec une nausée carabinée à cause de celle-ci. C'est là où je maudis le fait qu'un de mes traitements pour l'encéphalomyélite myalgique empêche de prendre des anti-douleurs de palier 2.
C'est toujours compliqué de cumuler des pathologies car elles ne sont pas forcément compatibles entre elles : par exemple, mon HSD a besoin de nombreuses séances de kiné mais mon EM fait que ça me créé des malaises post effort ce qui dégrade mon état général. Il y a souvent un choix à faire ce que les soignants ne comprennent pas forcément.
#hsd #emsfc -
Pour 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
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Pour 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
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CW: Chronic health + success: hypermobile Ehlers-Danlos Syndrome, joint degeneration, hand injury.
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.
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CW: Chronic health + success: hypermobile Ehlers-Danlos Syndrome, joint degeneration, hand injury.
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.
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I hate that my muscles are always so stiff and sore and heavy. It’s so frustrating and uncomfortable all the time.
#chronicillness #mecfs #pots #hsd -
Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy). -
Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy). -
Diagnosis: Hypermobile Ehlers-Danlos Syndrome
After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.
Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:
Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.
Metallic version of the hardware in my leg — I looked at my own x-rays for reference!
Final close up.
https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/
#art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme
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Diagnosis: Hypermobile Ehlers-Danlos Syndrome
After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.
Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:
Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.
Metallic version of the hardware in my leg — I looked at my own x-rays for reference!
Final close up.
https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/
#art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme
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Petit update
Hier, j'étais au centre de référence des SED non vasculaires à Garches pour valider définitivement le diagnostic de #HSD. -
Symptom: Arthralgia and Arthritis
I need to pick a “job title” to describe the work I do here. I initially tried to make a poll with a plug in, but alas it didn’t work the way I hoped.
Here are some of the options I’m considering. Feel free to reply/comment with any or suggest your own!:
- Health & Care Advocacy Designer
- Mast Cell Artist Syndrome
- Chronically ill-ustrating Health Advocacy
- Plague Artist
Rejected (not great for professional use) options that I’ll share with you because I love you, but don’t tell my PCP about any of these, k?
- Notorious Self-Diagnoser
- Health Insurance Reform Enthusiast
- Creatinine-level Checking Creative
- Medical System Subverter
- Bruh They’re a Totally Sick Designer
- Mario’s Brother Appreciator
https://www.illmarks.com/symptom-arthralgia-and-arthritis-and-a-poll/
#art #arthralgia #autoimmune #bodyHorror #bodyMapping #chronicIllness #eds #heds #hsd #hypermobility #hypermobilityspectrum #longCovid #longcovid #mastCell #mastcell #mcas #medicalArt #MillionsMissing #osteoarthritis #pwLC #pwme #spondylitis #symptom #symptomVisualization #symptomtracking
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Symptom: Arthralgia and Arthritis
Rejected (not great for professional use) options that I’ll share with you because I love you but don’t tell my PCP about any of these, k?
- Notorious Self-Diagnoser
- Health Insurance Reform Enthusiast
- Creatinine-level Checking Creative
- Medical System Subverter
- Bruh They’re a Totally Sick Designer
- Mario’s Brother Appreciator
https://www.illmarks.com/symptom-arthralgia-and-arthritis-and-a-poll/
#art #arthralgia #autoimmune #bodyHorror #bodyMapping #chronicIllness #eds #heds #hsd #hypermobility #hypermobilityspectrum #longCovid #longcovid #mastCell #mastcell #mcas #medicalArt #MillionsMissing #osteoarthritis #pwLC #pwme #spondylitis #symptom #symptomVisualization #symptomtracking
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Être handicapé et/ou malade chronique, c'est parfois revenir de vacances dans un état moins bon qu'avant notre départ.
En effet, même si je suis restée sur un rythme lent, ça restait plus intensif que ce que je fais chez moi où je suis alitée entre 20h à 22h par jour.
En plus, mon frère m'a offert un massage qui certes sur le coup, était très agréable mais qui a provoqué plusieurs subluxations douloureuses.
Souvent les médecins et/ou l'entourage nous exortent à nous reposer et nous détendre mais c'est loin d'être si simple que ça.
#hsd #emsfc -
Être handicapé et/ou malade chronique, c'est parfois revenir de vacances dans un état moins bon qu'avant notre départ.
En effet, même si je suis restée sur un rythme lent, ça restait plus intensif que ce que je fais chez moi où je suis alitée entre 20h à 22h par jour.
En plus, mon frère m'a offert un massage qui certes sur le coup, était très agréable mais qui a provoqué plusieurs subluxations douloureuses.
Souvent les médecins et/ou l'entourage nous exortent à nous reposer et nous détendre mais c'est loin d'être si simple que ça.
#hsd #emsfc -
“Robert Gottheim, Mr. Nadler’s chief of staff, strongly disputed the Homeland Security Department’s description of events. Instead, he said, it appeared the agents were angry because members of the congressman’s staff had seen the officers detaining migrants in the building, and because advocates who had also witnessed the detentions outside the courtroom had been invited by the staff members to Mr. Nadler’s office.”
#HSD #Congress #immigration #detentions
https://www.nytimes.com/2025/05/31/nyregion/nadler-aide-handcuffed-federal-agents.html -
CW: European League Of Football scores
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CW: European League Of Football scores
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Ce matin, j'étais chez le médecin pour l'enfant. Elle a commencé par examiner sa cheville et confirme qu'elle s'est faite une nouvelle entorse. Du coup, comme ce n'est que 6 mois après la dernière, elle a déclaré que l'articulation est instable et qu'il va falloir être très vigilant. Interdiction de sport pendant encore 2 semaines et ensuite chevillère adaptée pour le sport. Maintenant on prie les dieux des articulations moisies qu'elle ne se refasse pas mal trop rapidement 🫠
#HSD -
So I come to the hivemind:
do any of you all have any recommendations or favorite things that you have used on your own person to help keep you from accidentally injuring yourself?
Not just hands/fingers/wrists. But also arms/elbows, shoulders, knees and ankles.
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So I come to the hivemind:
do any of you all have any recommendations or favorite things that you have used on your own person to help keep you from accidentally injuring yourself?
Not just hands/fingers/wrists. But also arms/elbows, shoulders, knees and ankles.
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CW: Healthcare failures, under treatment
This winter I’ve asked my pain management doctor to help find a medication to help with the muscle tightness I experience due to hypermobility and cPTSD. One common muscle relaxer (non-benzo) medication I’d been taking for over a year really didn’t work; it never actually helped my muscles relax. I ended up very ill for a few weeks when I stopped taking it because none of the doctors or the pharmacists I talked to about this change advised me how to stop (lesson: when you start a new med ask the doctor and pharmacist if there are any cautions around stopping).
I tried a second medication that really didn’t really work either. The pain specialist agreed that it was disappointing and to make a follow up appointment. My primary care physician and I really hoped for her expert insight on this class of pharmaceuticals. This is not a class of drugs that my primary physician has expertise in.
I finally had the appointment today and the pain doctor suggested a YouTube channel about fibromyalgia.
Yes, you read that right. My primary care physician and I asked for specific help treating a symptom of hypermobility spectrum disorder and the doctor we turned to for expert advice said I should consider watching YouTube videos about fibromyalgia.
They said they didn’t want to suggest a medication because I _might_ have a hard time changing medications, since I got sick stopping a medication this past December. No, I don’t get to make that decision for myself, with my primary care physician, because the pain doctor decided for me.
At 55 I’m not sure if this is fully ageism, but it is the kind of projection of fragility that results in poor health outcomes due in large part to under treatment. I know this because I happen work to educate elders in self-advocacy in healthcare settings!
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CW: Healthcare failures, under treatment
This winter I’ve asked my pain management doctor to help find a medication to help with the muscle tightness I experience due to hypermobility and cPTSD. One common muscle relaxer (non-benzo) medication I’d been taking for over a year really didn’t work; it never actually helped my muscles relax. I ended up very ill for a few weeks when I stopped taking it because none of the doctors or the pharmacists I talked to about this change advised me how to stop (lesson: when you start a new med ask the doctor and pharmacist if there are any cautions around stopping).
I tried a second medication that really didn’t really work either. The pain specialist agreed that it was disappointing and to make a follow up appointment. My primary care physician and I really hoped for her expert insight on this class of pharmaceuticals. This is not a class of drugs that my primary physician has expertise in.
I finally had the appointment today and the pain doctor suggested a YouTube channel about fibromyalgia.
Yes, you read that right. My primary care physician and I asked for specific help treating a symptom of hypermobility spectrum disorder and the doctor we turned to for expert advice said I should consider watching YouTube videos about fibromyalgia.
They said they didn’t want to suggest a medication because I _might_ have a hard time changing medications, since I got sick stopping a medication this past December. No, I don’t get to make that decision for myself, with my primary care physician, because the pain doctor decided for me.
At 55 I’m not sure if this is fully ageism, but it is the kind of projection of fragility that results in poor health outcomes due in large part to under treatment. I know this because I happen work to educate elders in self-advocacy in healthcare settings!
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Connecting at IEW 2025! Find us at Yashobhoomi, Dwarka, New Delhi.
We're looking forward to discussing campaign opportunities for MS, Lubes, Power, HSD, Ufill, Speed, and HP Pay.
DM us to set up a meeting.
[email protected] / [email protected]
+91 95900 72221 / +91 88868 00888
#SammsJukeBox #IEW #Networking #EnergyIndustry #OilAndGas #Petroleum #Lubricants #PowerGeneration #Fuel #HSD #Ufill #Speed #HPPay #Business #Delhi #IndiaEnergyWeek #EnergyDeals #Meeting #Collaboration -
Coucou tout le monde 👋
Je suis Qana et j'ai 40 ans. Je suis bi :biheart:, aroace :aroaceheart: et demigirl :nonbiheart: . J'ai un trouble du spectre autistique (#ActuallyAutisticFR). Je souffre de douleurs chroniques et de fatigue chronique à cause d'un #HSD et d'une #EMsfc.
Je suis mariée et j'ai un enfant neurospicy dont je parle souvent. Je suis contre les VEO (violences éducatives ordinaires).
J'aime le militantisme.
Je me sens concernée par l'écologie, je mange prioritairement vegan et je ne prends plus l'avion depuis 20 ans. Je fais partie du groupe local de Zero Waste France.
Au plaisir de se retrouver sur Mastodon :mastodon:
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Coucou tout le monde 👋
Je suis Qana et j'ai 40 ans. Je suis bi :biheart:, aroace :aroaceheart: et demigirl :nonbiheart: . J'ai un trouble du spectre autistique (#ActuallyAutisticFR). Je souffre de douleurs chroniques et de fatigue chronique à cause d'un #HSD et d'une #EMsfc.
Je suis mariée et j'ai un enfant neurospicy dont je parle souvent. Je suis contre les VEO (violences éducatives ordinaires).
J'aime le militantisme.
Je me sens concernée par l'écologie, je mange prioritairement vegan et je ne prends plus l'avion depuis 20 ans. Je fais partie du groupe local de Zero Waste France.
Au plaisir de se retrouver sur Mastodon :mastodon:
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Just updating this for my new account on hachyderm.io.
He/him
I'm a developer of Mac apps (Marked 2, Bunch, nvALT/nvUltra) as well as a hundred+ utilities (na, doing, howzit, SearchLink…). I blog at brettterpstra.com and podcast on Overtired.
I love cats, dogs, and hiking. I'm #adhd and #bipolar, with a bit of the ol’ #cptsd, and am very open about mental health. I'm partners with an #autistic person and we love finding ways to make our neurodivergences work together.
Also #pots #mcas #hsd #dysautonomia just to round out the mix. An alphabet soup of disorders — it’s what makes me a special boy.
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Just updating this for my new account on hachyderm.io.
He/him
I'm a developer of Mac apps (Marked 2, Bunch, nvALT/nvUltra) as well as a hundred+ utilities (na, doing, howzit, SearchLink…). I blog at brettterpstra.com and podcast on Overtired.
I love cats, dogs, and hiking. I'm #adhd and #bipolar, with a bit of the ol’ #cptsd, and am very open about mental health. I'm partners with an #autistic person and we love finding ways to make our neurodivergences work together.
Also #pots #mcas #hsd #dysautonomia just to round out the mix. An alphabet soup of disorders — it’s what makes me a special boy.
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En ce moment, j'ai décidé de prendre soin de moi et de me faciliter la vie le plus possible.
Je me suis commandé un TENS pour soulager mes douleurs. Je l'avais déjà testé à l'hôpital de jour et ça avait super bien marché sur moi. Le kiné m'a refait une session pour ma capsulite et encore une fois, mon corps réagit très bien. Du coup, c'est mon cadeau de Noël de moi à moi.
En cadeau de Noël de mes parents, je leur ai demandé un tabouret de coiffeur avec un dossier et des roulettes. Ça me permet de préparer à manger sans avoir à me relever sans arrêt. Je roule d'un point A à un point B. Pour moi qui ait besoin d'économiser mon énergie, c'est parfait.
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#Poster designed by Joelle Schonhoff for the sales platform #GIFD - Got It From Düsseldorf, which showcases unique creations by #design students from the Peter Behrens School of Arts at Düsseldorf University of Applied Sciences.
#graphicdesign #posterdesign #typography #printdesign #posters #hsd #joelleschonhoff #certainmagazine
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Bilan de l'année 2024
Janvier : en errance médicale, sans aucune aide pour mon handicap, cercle social limité, en attente de validation du diagnostic de TSA pour ma fille
Décembre : fin de l'errance médicale avec deux diagnostics (#HSD et #EMsfc), des aides qui se mettent en place (CMI priorité et stationnement, l'AAH, le CLM), une aide à la mobilité grâce à @UnPititBoulet, une amélioration de la douleur grâce aux vêtements compressifs, moins de MPE grâce au réajustement des bêta bloquants, un nouveau rythme de vie plus contraignant, un diagnostic validé pour l'enfant, des belles amitiés en ligne et IRL (iels se reconnaîtront 😻)
2024 aura été une année fatigante mais qui m'aura beaucoup apporté ✨✨✨
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Credit Points für den Masterstudiengang Psychosoziale Beratung an der #HSD sollen für 1 Massenzustrom an Ehrenamtlichen sorgen, die in der Angehörigenpflege benötigt werden. Werden diese Studierenden dann zeitweise von den Pflegebedürftigen adoptiert, damit formal Angehörigenpflege vorliegt?
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Rethinking the commute: two wheels, one loyal co-pilot, and endless views. The Tern HSD makes it all effortless.
#MoveDifferently #TernBikes #Tern #TernBicycles #LeaveTheCarAtHome #HSD
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@deliberatebikes' autumn essentials: crisp air, changing leaves, and the HSD 🍂
Small frame, big potential. The HSD offers the cargo capacity you need without sacrificing maneuverability. It’s UL 2849 certified, built to exceed the DIN 79010 cargo bike standard, rigorously tested, and ready to handle up to 180 kg.
#AutumnEssentials #HSD #TernBicycles #BikeLife #AutumnCycling #BikeCargo #OctoberRides #TernBikes
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Le truc improbable. Je reçois un courrier sous pli médical confidentiel. J’ouvre le truc et je relis deux fois pour être sûre de bien comprendre. Mon ALD pour le #HSD est bien acceptée 🥳🥳🥳
Alors que suite à mon recours ils m’avaient dit : no. Ben finalement la comission dit oui. Bon je ne pige rien mais je suis contente. -
Whether it's two or four legged loved ones, groceries, or camping gear, the HSD can do it all. Trust us to carry the things that matter, in safety and style 🚲
#HSD #ternbikes #ternbicycles #bikelife #adventuresbybike #cargobike
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Please share the above research paper and this 2019 #hEDS and #JHS (used interchangeably for #HSD) population paper https://bmjopen.bmj.com/content/9/11/e031365
Both are vital in correcting social and medical misinformation about hypermobility, and helping patients get proper #EDS diagnoses and care
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Huge #EDS news! What does this mean?
1) #hEDS, the only common EDS type at 1 in 500 and the only type without a biomarker until now, finally has a biomarker
2) #HSD was likely #hEDS all along as many suspected, and the 2017 reclassification was wrong 🧵 https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.63857
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CW: Healthcare Referral Roulette, as it relates to: dysautonomia, POTS, hypermobility disorders
Long, ranty toot ahead!
My doctors and I started to consider that I’m experiencing #dysautonomia this past autumn. I had been referred to the pain clinic that’s part of our local university healthcare system and the doctor I see there referred me to one of the chiropractic doctors affiliated with the clinic.
At my only appointment with the chiropractor they used the time to take a very detailed health history and at the end told me I’d answered “yes” to all but one symptom of dysautonomia. They told me they had thought to take this history because I had been diagnosed with #HypermobilitySpectrumDisorder (#HSD) and my primary care physician also suspected that I have #MCAS.
The chiropractor noted that dysautonomia is pretty common for folks with a hypermobility disorder (60%!) and rheumatologists often miss it and incorrectly diagnose fibromyalgia since they overlap symptoms, including central sensitization. She said she would refer to the two neurologists within the system who deal with dysautonomia.
She then referred me to a naturopath within the same system, without talking to me and wouldn’t reply to messages. Since I have an excellent naturopath already, one who is well versed in dysautonomia, I didn’t want to pay over $600 out of pocket to see another one. The next time I saw the pain doc I brought up dysautonomia/#POTS, adding that my knee PT had remarked on my symptoms and put in my chart that he felt certain I have dysautonomia/POTS and should have a neurological consult.
Since it’s a university healthcare system I always chat with a medical student before seeing my pain doc. The medical student laughed and asked why my PTs or I would suggest something “so unusual”?! He then primed the pain doc to dismiss me even though I reminded them I already had an HSD diagnosis and dysautonomia isn’t uncommon.
I talk to my primary physician and my osteopath, both light up at the suggestion of dysautonomia precisely because it explains several things. Both strongly encourage things like increased salt/electrolytes, doing some of my strength exercises supine or seated, not pushing myself in order to avoid post-exertional malaise. My PT who specializes in hypermobility disorders says it’s rare when patients don’t have some kind of dysautonomia.
I go back to the pain doc and insist that they stop dismissing me. I ask them to honor the neurological referral the chiropractor said she was making in October 2023. They finally make a referral to neurology in June.
I just got a call from the pain clinic to tell me that neurology rejected my referral since there’s no doctors working on this disorder. I don’t know if the two doctors the chiropractor said dealt with it left between October 2023 and June 2024 or of they were just wildly confused. Either way, it sucks and is very frustrating.
The online discourse around doctors in Oregon who treat dysautonomia has been among the lines of, “I heard a nephrologist in Bend is seeing patients!”
To translate that for non-locals, people are suggesting a kidney specialist in a small, Central Oregon town 120 miles away from where we live.
Maybe the Long COVID clinic is seeing folks? My osteopath gave me a handout he grabbed at a doctor lunch seminar on dysautonomia and Long COVID. However, since my dysautonomia is not due to COVID, that’s another referral that would go nowhere.
I am really lucky, my symptoms are mild and I have seen improvements with treatment approaches for both MCAS and dysautonomia/POTS. While I’m not wild about more doctors, I have really hoped to find the right specialists to help me stay on this plateau and not wait until some health event causes my symptoms to worsen!