#heds — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #heds, aggregated by home.social.
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🔥 psa for anyone taking quercetin on a regular basis 🔥
this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!
(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)
i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay :blobsweatsweary:
take care people and good luck :Blobhaj_Heart_Rainbow:
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🔥 psa for anyone taking quercetin on a regular basis 🔥
this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!
(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)
i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay :blobsweatsweary:
take care people and good luck :Blobhaj_Heart_Rainbow:
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🔥 psa for anyone taking quercetin on a regular basis 🔥
this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!
(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)
i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay :blobsweatsweary:
take care people and good luck :Blobhaj_Heart_Rainbow:
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🔥 psa for anyone taking quercetin on a regular basis 🔥
this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!
(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)
i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay :blobsweatsweary:
take care people and good luck :Blobhaj_Heart_Rainbow:
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🔥 psa for anyone taking quercetin on a regular basis 🔥
this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!
(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)
i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay :blobsweatsweary:
take care people and good luck :Blobhaj_Heart_Rainbow:
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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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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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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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Oh my goodness, I'm so nervous. I have a very important doctor's appointment in a half an hour that I really NEED to go well. I'd appreciate it if anyone sends me good vibes/wishes me luck/whatever. Aaaaa!!! 😖
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS -
guyyyyys i've just hit my first #hEDS milestone! There's a stretchmark on my side and on one of my hips.
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guyyyyys i've just hit my first #hEDS milestone! There's a stretchmark on my side and on one of my hips.
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guyyyyys i've just hit my first #hEDS milestone! There's a stretchmark on my side and on one of my hips.
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guyyyyys i've just hit my first #hEDS milestone! There's a stretchmark on my side and on one of my hips.
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guyyyyys i've just hit my first #hEDS milestone! There's a stretchmark on my side and on one of my hips.
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CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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.
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CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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.
-
CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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.
-
CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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.
-
CW: Chronic health conditions: hypermobile Ehlers-Danlos Syndrome, post-exertional malaise
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.
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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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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 THLa 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 -
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 THLa 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 -
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 THLa 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 -
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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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
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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
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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
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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
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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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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.
-
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.
-
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.
-
I've had enough. Time to be that bitch!
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I've had enough. Time to be that bitch!
