This episode of the #BendyBodiesPodcast is by far the most comprehensive look at the lower body challenges people like me who have #EDS/#HSD face in keeping ourselves upright.

The advice I wish I’d gotten 20 years ago? You knees hurt because your hips and your ankles are off. Lo and behold, that has indeed been the culprit all along.

https://www.bendybodiespodcast.com/73-understanding-lower-extremity-pain-with-pradeep-chopra-md/

#Hypermobility #HypermobileEDS #ZebraStrong #TogetherWeDazzle

My deepest sympathies to the loved ones of #StephanieAston, whose far-too-soon passing illuminates how #WomensPain and #InvisibleIllness are dismissed by medical professionals the world around.

https://www.nzherald.co.nz/nz/stephanie-aston-death-eds-sufferers-call-for-change-after-doctors-accused-woman-of-faking-illness/VX4Q6CAWRVH25I6OCKGQ4KTW4M/

While I have a less lethal form of #EDS than Aston, I have experienced firsthand the shock, surprise, and denial that my symptoms elicit from providers. Without greater awareness about this rare disorder, more women will suffer and die.

#WomensHealth #hEDS #Hypermobility

The only words I can think of to describe how my back feels today is, well you know the bit in Immigrant Song where they're just basically screaming? That. That's how my back feels. I'd take pain pain over #NervePain any day. #BackPain #ChronicPain #scoliosis #fibromyalgia #hypermobility #arthritis
I'm also avoiding my corsets for a while longer to allow my insides to heal more post surgery as I don't want everything velcroing back together, #adhesions are not fun

Just wondering if any of the #hypermobile #hypermobility #eds #scoliosis #arthritis #ChronicPain peeps on here have had any joy using shapewear, post patrum 3 part clinchers (theyre like elastic and velcro corsets or old school girdles) or sports compression leggings/shorts to help stabilise their hips or help with #hipPain and #LowerBackPain? Since my surgery the pain has lessened (woot) but I still have my hip/joint issues to contend with along with weakened core.

I swear, sleeping and putting on shoes are more likely to cause tendon & ligament injuries than anything else I do.

I woke up with something out-of-whack at the *front* of my shoulder & it’s gotten worse all day. WTF, body? Why you gotta be this way?

#hypermobility #EDS

Welcome new Mastodon followers, new or old. Glad you found us here. You're in good company.

I haven't been tooting much yet, but am glad to have spun up this account as a Twitter (X) alternative.

I'll try to keep the #EDS info and tips coming here. Hope you'll join me.

#Hypermobility #HSD #hEDS #NEISvoid

I'm recovering well from the surgery. My insides feel weird, I hadn't realised how much pain and discomfort the adhesions were causing as well as how much they were affecting my mobility. The incision points still hurt but I'm not in a huge amount of pain or anything. My general pain levels are mostly ok, have a trapped nerve in my hip again. #scoliosis #fibromyalgia #hypermobility #arthritis

"Don't dislocate anything, that's my job!": my send off to @kabrams this morning lol.

(I subluxed the distal joint of my right ring finger. It's very annoying and slightly painful. 🤪) #hypermobility

I hate it.

Having a very emotional response.

Really makes a difference when you don't feel like the Dr has heard or understood you 😪

Keen to talk to anyone who's used one before, this doesn't feel like it has any capacity to be useful, I don't understand it at all, and I'm finding that really stressful and depressing (I'm in tunnel vision panic mode, tbh)

#eds #hypermobile #hypermobility

Wore my #corset all day. While it no longer fits properly (joys of weight gain) it still works well enough to shove my hip back where it should be and hold it there, vastly reducing my #pain levels. I do plan on saving for a new size but it'll probably be the end of the year. Anything that reduces the AMT of pain meds I need is a good thing. I also plan on getting a pool membership just to walk the pool as a #lowImpactExercise . #scoliosis #hypermobility #fibromyalgia #arthritis

At the recommendation of one of my #hypermobility support groups, I’ve started doing median nerve flossing exercises twice daily, and they really seem to be helping with my neck/shoulder pain. Passing the video I used in case it is helpful to any of my #ChronicPain friends on here:

https://insyncphysio.com/chronic-neck-pain-shoulder-tightness-median-nerve-flossing/

#NEISVoid #hEDS

Scathing video review of my experience with the office manager at my physical therapist’s practice pending. Folks, this is a classic case where “if you can’t say something nice, don’t say anything at all” would have worked WONDERS. #Ableism #AbleismIsTrash #MedicalGaslighting #CovidIsntOver #BeKind #EDS #Hypermobility #HealthCare

Slecht nieuws vandaag: na 2 maanden 24/7 een brace te hebben gedragen, is de ontsteking in mijn duimpees nog steeds niet genezen. Dat betekend dat de kans op spontaan herstel erg klein wordt.

De grote vraag is: wat nu? Negeren? Zo door gaan? Een injectie? Een operatie? En welke operatie dan?

Ik vind het een lastige keuze. Waarmee kan ik met zo min mogelijk pijn, zo zelfstandig mogelijk zijn? Ook in de rolstoel? Pfoeh.

#hypermobility #Quervain #roller

@UntoNuggan I’m keeping an eye on some research that’s being done on identifying a hEDS gene but until then it’s a cobbled together group of specialists and doctors who at least read the studies I bring them even if they don’t know a whole lot about my actual conditions. #NEISVoid #hypermobility

I’m tired of being good at being in pain. I’m tired of “managing it so well” and “I can’t even tell” and “you hide it well.”

I just want to scream and cry and sob and be miserable about it for a while.

I think that’s the worst part about chronic pain. If I broke my arm or was bleeding out, I’d get to cry about it. But because it hurts all the time, it’s just a normal Friday.

#NEISVoid #ChronicPain #hypermobility

*Snap* *Crackle* *Pop*
It’s #hypermobility not Rice Krispies characters 😉

The little morning ritual of figuring out how badly things hurt as a baseline for the day, moving everything slowly to see if it will take my weight. #NEISVoid #hypermobility #ChronicPain

I have quite severe #hypermobility. In my late thirties, I'm only figuring out what that means and how broken I am.

Yesterday I found out that when I was a child, I saw a doctor regularly (physio? Podiatrist?). The reason for this was "you were always tired and you couldn't walk very far".

That's still the case. If it's not physical fatigue, it's ankle sprains. I've spent 39 years thinking of myself as a lazy failure, and only now am I learning I have legitimate disabilities

I like wearing leggings or shorts under skirts and dresses but sometimes even the pressure of leggings can be too much for my raw nerves. So I've got myself a few #pantaloon style patterns and I plan on making myself some once husband retrieves my linen bolt from the attic. #sewing #diy #disability #InclusiveClothing #MakersGonnaMake #fibromyalgia #arthritis #hypermobility #scoliosis

I’m gonna create a KoFi account and make little cards where people have to scan the QR code and pay me every time they recommend yoga or something stupid for chronic pain.

#ChronicPain #Hypermobility #ChronicallyIll