@andrewducker @sarahdal Boosting because it’s REAL. I don’t think most people have even heard of EDS or POTS or other conditions like these. CF and ME as well. Sometimes people only learn about them from those with #LongCovid. #EDS

Woman accused of faking symptoms of debilitating illness dies aged 33 | The Independent
https://www.independent.co.uk/news/health/ehlers-danlos-syndrome-stephanie-aston-death-b2405284.html

#EDS
#EhlersDanlosSyndromes
#Misdiagnosis
#MisdiagnosedAsMentalIllness
#NIH
#Endometriosis
#Misogyny

it seems, to me at least, that #EDS is, and always has been, like a spectrum. it is only strictly defined and categorised because medical folk tend to like to do that to everything.

You all hear about this in the #EDS or #hEDS community yet? Does it work?

https://www.painnewsnetwork.org/stories/2023/4/12/researchers-find-cause-and-possible-treatment-for-hypermobile-ehlers-danlos

#ADHD = I can’t do something until I am 100% in the mood to do it. Which means my kitchen sink was left foul for far too long.

Finally, I’m in the mood to do it. Got the gloves on, sponge and cleaning supplies ready.

…#EDS means that five minutes into scrubbing the sink down I have to stop because my elbow is screaming in pain.

*insert internal screaming gif here*

Anyway, I got the drain strainer thing out and mostly cleaned that out, but not fully. It’s pulled out and draining in the sink,

I mean, knocking things over is kind of my thing.

#NEISvoid #Disabled #EDS #POTS #MECFS

As I try to stay hydrated today, I would like to stress that there is NOTHING wrong with using 2 hands to keep a glass, mug, or water container steady. I don't even use containers without lids (except for my tea, with which I live dangerously) because I will most definitely knock them over or pour water on myself.

#NEISvoid #Disabled #EDS #POTS

wow i have been ignoring connective tissue pain all the time, except for the relatively few really super super bad times when i can't. #EDS

@JB611 This is so true Josie. People often talk about young people being 'digital natives' because they grew up with tech, but there are often huge gaps in their skillsets especially with essential digital skills #EDS for the #workplace.

In my #DigitalInclusion work I have often heard that many young people don't know how to add an attachment to an email. That's hugely problematic because attaching a CV/resume and covering letter is one of our key routes to employment.

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 had planned to spend today cleaning my apartment (it desperately needs it) but my oft-sprained/dislocated knee and elbow are both telling me yup, the air pressure has changed because of the typhoon, and nope, we will not be doing anything but sitting today. 😖

So today might be a Mass Effect and Baldur’s Gate 3 day instead. #FunWithEDS #EDS

#FunWithEDS means I am quite literally painfully aware of the typhoon rolling in. Walking is paaaaaaaain. My knee hates me AND the typhoon. #EDS

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

I have #EDS and #MCAS and for some reason cannot keep my upper legs warm. The skin often fall to 85 degrees.

In full flannels and heavy polyester pants, my legs feel like an ice block. The room temp is 75 degrees. No reason to feel this cold.

I can't remember the last time my body felt warm without an electric blanket.

Even outside, it has been a chilly summer, and I have had to dress for winter.

Any suggestions on how to keep legs warm?

Please help fund my friend Jenny's surgery. She has very severe #MECFS and #EDS meaning that she's been bed bound and unable to move for many, many years. She needs to be flown to the US for the rare surgery on her neck, which is her best chance to survive and recover https://www.gofundme.com/f/savejenny?viewupdates=1&rcid=r01-16917624629-c6aa972a384f11ee

Today in Anna Is Sometimes Not Real Bright - I am going camping which will I hope involve some hiking. I have EDS, and some of the most unstable knee joints my orthopedist has ever seen.

Thus, I am supposed to wear knee braces when I am doing anything strenuous. I am very bad about this, and when my last ones wore out I just didn't replace them.

But I *do* want to hike, so I replaced them - with upgraded models. And uhhh...

Is this what it feels like to have knee stability?!

#EDS #SelfCare

Me: *exists*
Shoulder: *subluxes*

#cursedbody #eds #hypermobile

@Cassandra I don’t know of many on here who identify as disabled in this way, sadly. #lupus is one, #POTS #EDS #NEIS are some others.
As for personal experience for my lupus, edibles were more effective by far, but the cream reduced some of the local inflammation, no effect on pain level.

#eds, and ongoing trauma and/or #ptsd ----> disc degeneration?

Good rainy day.

Physical therapy today.

Um. Doing wrist circles last night really hurt. I had no idea my right wrist was bothering me so much.

I have to spend over an hour a day doing stretches, if I don't want to stiffen up. And strengthening is almost out of the question with #EDS.

I am weak.

I need ideas for a simple out of the building trip that doesn't cost, require walking, and brings me closer to nature.

I miss taking care of trees and gardens.

I might cry though.