#heds — Public Fediverse posts

Don’t like today, I’m back in bed can’t face food and I want to curl up and spend the rest of the day napping and audiobooking medicated hydrated and all my plushies are here soo not all bad

#Fibromyalgia #hEDS but probably #vEDS

Sharing my #mutualaid request again since I'm unfortunately still in need, and I'm sorry ugh 😓 Any little bit of help, shares, or kind words would be SO appreciated! 😖💖

#disabilitycrowdfund #chronicpain #hEDS #pEDS #POTS #crowdfund #emergencycrowdfund #spoonie #NEISvoid #MECFS #AuDHD #actuallyautistic #autism #longcovid #marfansyndrome #EDS #MCAS #ADHD #disabled #disability #mutualaidrequest #spooniechat #chronicillness #fedihelp #mutualaidspace

RE: https://plasmatrap.com/notes/arc2btyjx2

I'm embarrassingly boosting my #mutualaid request again since I'm unfortunately still in need, and I'm sorry 😓 Any little bit of help, shares, or kind words would be SO appreciated! 😖

#disabilitycrowdfund #chronicpain #hEDS #pEDS #POTS #crowdfund #emergencycrowdfund #spoonie #NEISvoid #MECFS #AuDHD #actuallyautistic #autism #longcovid #marfansyndrome #EDS #MCAS #ADHD #disabled #disability #mutualaidrequest #spooniechat #chronicillness

RE: https://plasmatrap.com/notes/arc2btyjx2

Begrudgingly sharing my desperate #mutualaid request again since I'm unfortunately still in need, and I'm so sorry 😓 Any little bit of help, shares, or kind words would be SO appreciated! 😖
#disabilitycrowdfund #chronicpain #hEDS #pEDS #POTS #crowdfund #emergencycrowdfund #spoonie #NEISvoid #MECFS #AuDHD #actuallyautistic #autism #longcovid #marfansyndrome #EDS #MCAS #ADHD #disabled #disability #mutualaidrequest #spooniechat #chronicillness

RE: https://plasmatrap.com/notes/arc2btyjx2

Please share, if you can? I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund

RE: https://plasmatrap.com/notes/arc2btyjx2

Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund

RE: https://plasmatrap.com/notes/arby8y5ip8

Here's the video that helped me, I've watched it with closed captions on.

The hypermobile neck. Exploring neck pain and instability with clear explanations and hEDS-friendly exercises. Made by Jeannie Di Bon, a disabled woman with hEDS, POTS and MCAS.

https://www.youtube.com/live/e60ljjIAksg

There are many great articles on her website too: https://jeanniedibon.com/blog/

#Hypermobility #hEDS #Disability

Last osteopath appointment until I'm back from the surgery trip. The poor guy was slightly despairing over the amount of inflammation in my body but he managed to get a couple things calmed down despite my body throwing a tantrum. Feet especially hurt a little less now. 🩵

I'm not terribly surprised I'm like this given I'm stressed the fuck out AND the weather is peak MCAS trigger with the high humidity/heat combo and ragweed turning my eyes into active volcanos.

#MCAS #hEDS

If you're hypermobile and have been led to believe you're not working harder every day than people whose connective tissue is doing its job, then try this:

Do a set of Bulgarian split squats.
Take a break.
Then put on an SI belt and do another set.

Do a set of crunches.
Take a break.
Do another set of crunches but this time loop a yoga strap around your thighs just above the knees and tighten it.

This also works with reverse crunches.

Assess whether the stabilisation has made a difference. And if you want let me know.

Ofc you can also just secure your thighs with a yoga strap or similar while sitting on a chair and revel in suddenly being able to just *sit*.

#gymbro #himbo #heds #hypermobility #disability

The prevalence of cardiac symptoms in Ehlers-Danlos syndrome and hypermobility spectrum disorder: a pilot study. - Abstract - Europe PMC

https://europepmc.org/article/MED/42081697

#EhlersDanlos #hEDS #POTS

Excessive Hypocapnic Cerebral Vasoconstriction in Hypermobile Ehlers-Danlos Syndrome Assessed With Real-Time Magnetic Resonance Imaging During Lower-Body Negative Pressure. - Abstract - Europe PMC

https://europepmc.org/article/MED/42568068

#EhlersDanlos #POTS #hEDS

Hypermobile people who get hand pain! Do you know of any hypermobilty-friendly exercises that have helped strengthen hands and wrists without instead causing those joints to catch on fire and explode?

I've been around in circles with unhelpful pt experiences but I want to try again to work on this problem for myself. Asking the wise folks of fedi for anything I might try!

*me resting*
*stands up to walk to bathroom*
My hypermobility/hEDS: “btw you’re VERY aware of your kneecaps, aren’t they a lil loose???”

pls make it stop #hypermobility #heds #ActuallyAutistic

Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC

https://europepmc.org/article/PPR/PPR1287295

#hEDS #EDS #POTS #MCAS

This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!

This summer has been so rough in the #Edmonton area with all the rain. I've been getting a lot of migraines, pain, and fatigue that has been hard to deal with. I actually splurged on some compression socks even though I haven't worn them for a couple years. They definitely help with the swollen feet and dizziness.

My mother-in-law gave me some old walker she had laying around outside, I swallowed my pride and I took it to K-days. (the place where I first suspected I had POTS in 2019, I went on a swingy ride and was screaming because my feet felt like they were going to explode) It was amazing to be able to sit or lean on something whenever I got dizzy or sore. There was not a lot of seating this year, especially at the bbno$ concert, so I was thankful I had it. I was not in as much pain the next day as I could have been, I think. It's hard to admit I need stuff like that, but it made one of the few days I could get out and have fun 100x more enjoyable. So fuck what anyone thinks, I'm using my walker when I need it. (and am looking forward to decorating it, it's pretty scuffed up)

#pots #heds #mcas #dysautonomia #chronicallyill #yeg

*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!

Hey EDS frendos, anyone tried the Body Braid?

Potential client reached out with a YT video on how to make one and asked if I'd be able to. Looks doable, and now I'm just kinda curious if they work!

#hEDS #EDS

Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund

RE: https://plasmatrap.com/notes/aoctlai1vp

I'm so deeply sorry and embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #chronicallyill #crowdfund #emergencycrowdfund #chiari #tetheredcord #IMSORRYIHATETHIS

RE: https://plasmatrap.com/notes/aoctlai1vp

Distinct sensory and autonomic involvement in hypermobile Ehlers-Danlos syndrome compared with idiopathic small fiber neuropathy: a multimodal study. - Abstract - Europe PMC

https://europepmc.org/article/MED/42399338

#hEDS #SFN

@spiegelmama
On my dad's side of the family nearly every male died of an aneurysm or had an aneurysm that was found when they died. This was the biggest determining factor that led to my diagnosis (I was diagnosed unspecified EDS with the old criteria). It's important to remember, however, that EDS is a spectrum disorder and unless you have family history or have vascular EDS (if you live beyond 40 you almost certainty don't have vEDS) I wouldn't freak out. Checking is always a good idea though with ultrasound, CT-A, etc just in case.

#hypermobileEhlersDanlosSyndrome #hEDS #hypermobility

Patients must see geneticist experts in #EDS #EhlersDanlos or other conditions for complete, legit geneticist tests and care

Especially for types in dark genetics like #hEDS, aka types without a diagnostic genetic biomarker

So many with delayed care, wrong info, harm from DTC! Save your money

4/4

It took less than 2 minutes looking at Theo for the hospital physio to know what she was about to find… hyper-mobility. Yup. I knew it. Damnit. #eds #heds #childrenshealth #aonz

Have you ever wondered about rheumatoid arthritis but were afraid to ask? Do you want to know my story? #ChronicIllness #ChronicPain

First: RA is an autoimmune disorder where the immune system attacks healthy joint tissue. It’s debilitatingly painful, causes joint deformation, and is difficult to treat in some (lucky me). It can affect organs, too.

Second: Osteoarthritis is common, age related, and happens gradually over time to most who live long enough or have had joint injuries. It’s not autoimmune, it occurs naturally.

Let me show you with these two photos of my hands:

The first one was taken in 2017 when I *first* had symptoms but was dismissed for the next 6 years. At that time, I was diagnosed with #hEDS connective tissue disorder (correct) and it wasn’t further investigated as autoimmune pain (wrong). I finally got diagnosed with #RA in 2023.

The second one was taken this morning. This hand now has constant pain and stiffness. I’m on 3 different medications trying to keep my disease under control.

I’ve used my hands my whole life to enjoy many different hobbies (sports, music, photography). It’s been devastating to lose, but I’m doing my best.

🫶🏻 TY for reading.

🔥 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:

#MCAS #POTS #hEDS #LongCovid #allergies

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%

guyyyyys i've just hit my first #hEDS milestone! There's a stretchmark on my side and on one of my hips.