Hypermobile Eds - Tumblr Posts

can they invent a mobility aid that helps with the joint pain & also does NOT cause different joint pain in a different area from use

Today's mystery is locating the cause of The Big Nausea. IBS and it's real nausea? CPTSD and it's my nerves? Autism and it's not actually nausea but a secret new body feeling I'm having a hard time labeling? EDS and the nausea is real but it's because my organs are held together with scotch tape? is it because of have eaten before or is it because of haven't eaten again? Could this perhaps be a dire omen? more as the story develops after this commercial break, stay tuned folks!

Mystery Nausea really starting to feel like eat grapes outside in grass...

She had Ehlers Danlos Syndrome.

and I am TIRED of pretending like she didn't! she's who I had as chronic pain representation before I had characters like victor from arcane. SHE was the first time I saw someone with a "normal" body uncontrollably writhe in pain, who could barely walk sometimes because of it, who had their every waking moment effected by it.

"Every cell in my body is torn apart and stitched back together, over and over every day" This line, the delivery of it, the combination of it with everything we've seen of her, I felt it. I have been feeling it. I will continue to feel it every day of my life. Sure she might have fictional illness number 34462398573948 but if that's the closest we can get I'll take it.

Is she a villain who falls under the disability being the motive for villainy trope? Yes. but she is at least sympathetic and they spend enough time with her pain to make it relatable. Do I love that she's a villain? absolutely not, but I didn't really get a choice in picking who I see myself in. They don't make characters with pain like this, at least not enough for me to cherry pick my favorite. Genuinly the only other one I can think of right now is Viktor from arcane, who (spoiler alert) IS ALSO A VILLIAN even if he's better representation / even MORE sympathetic than miss ma'am over here.

The relatability of characters that are stitched/sewn/stapled/ball-jointed etc together as someone with Ehlers Danlos

Every single character of this vein has eds TO ME! and they have been vital representation in a world that likes disabled people more when they're metaphors.

I was wondering if anybody else with eds also found solace in these more literal interpretations of what it means to be physically falling apart at the seams?

Temperature regulation issues suck so much and are so weird because it does not matter how many layers I put on, if the skin is exposed it will be cold. My fingers are like a full 20 degree difference than my wrist that's covered by my jacket. just move the warm blood over there omfg

Any hEDS folk got any tips for subluxation?

I’ve never dislocated anything but just got told that I likely have hEDS and am realising a few things.

Sometimes my joints make a click sounds and hurt like a bitch and feel really weird. Kinda floppy but sometimes stiff depending on where it is. I didn’t even realise subluxation was a thing. Is this subluxation??

Usually I just wiggle the joint around a bit and wait for it to click back. If it’s causing loads of pain then I just ignore it and wait for it to go away, which is usually does when I accidentally move weirdly and then it clicks back where it’s supposed to.

I have a feeling that that’s not how you’re supposed to deal with it but don’t know any alternatives.

Any help?

I’m gobsmacked that I didn’t know this was because of my hypermobility and it isn’t just an everyday normal thing for people wtf

finding out that non-hypermobile people don’t get food stuck halfway down their chest constantly is baffling to me. like wdym you can eat a sandwich and it doesn’t just decide to stop there

Thinking about the hippie guy who randomly gave me and my mum a pack of Epsom salts while we were shopping.

Kudos to that guy because a few months later it turns out I likely have h-EDS and Epsom salt apparently helps with that!

Got my compression gloves! Feels weird but they’re forcing me to not do weird finger things so much.

We got a referral to cardiology and a referral to rheumatology!

And thus begins the diagnostic process...

Any tips for getting an Ehlers Danlos Syndrome diagnosis??? Several of my docs have suggested that I have it but no one has actually done any tests pls help y’all. I’m sick of asking and getting nowhere

Dance team tryouts are coming up and I really want to join but I can’t. Ehlers-Danlos is ruining my high school experience rn

Two years ago I was a ballerina. Classes two-three times a week. I loved it. then I had to quit because I developed very painful bunions that were only described as moderate by medical staff. Fast forward to today, where I can’t even do simple things like walking or bike rides without being completely out of commission the next day. I’ve missed so much school because of my disability. I have no mobility aides. Oh yeah, and my little sister resents the fact that it gets me attention from our mom. Yay.

So I’m reading fourth wing and I just. The main character is just so me, like she talks about how she’s more fragile and breakable than other people DUE TO HER LIGAMENTS AND MUSCLES NOT HOLDING HER JOINTS IN PLACE. IM A GIRL WITH EDS, THE BENDY BENDY OUCH CHRONIC ILLNESS. I LEGIT STARTED CRYING BECAUSE FINALLY SOME REPRESENTATION IN MODERN LITERATURE!!

EDS girly here! That happens to me as well. I was told during my evaluation for my diagnosis that it’s a sign of EDS. Not sure how common it is within the EDS community, but it definitely is a sign

hihi question for anyone who sees but especially hypermobile people and people with any form of EDS/HSD

is it normal (as in not a sign of hypermobility) to see your joints move when you pop them? it doesnt happen with all of my joints but the ones i can think of right off the top are my thumbs. everytime i pop them you can see the joint/bone move through my skin and pop upwards. theres no pain or anything but everyone who sees it looks disgusted lmao so i wanted to see if that was abnormal or they just dont pay attention when it happens

(ill add i believe its happened with my shoulders as well, and my hips but its harder to see there because im fat)

(also also i specify eds not just because of this, my dr wants me tested for eds due to a large number of symptoms, this is just one i noticed recently)

POTS and hEDS girly here!

electrolyte tablets or packets to put in your water are essential

if you can, try to get Celtic sea salt- an ER nurse recommended it to me when I went in for a POTS flare because it also has other good minerals in it

obligatory drink more water!! I use flavored electrolyte mix to help me actually drink the water (it’s called Mio, and comes in multiple flavors with different uses/purposes, some are caffeinated, others aren’t, some are just for flavor)

find ways to sit/rest throughout the day, whether it be finding ways to make your route around school shorter or sitting at a closer table/desk so you don’t have to walk as far

if you get really dizzy, GET CLOSE TO THE GROUND. if you faint while closer to the ground, you are less likely to injure yourself

you might want to bring up your concerns to you primary care doctor the next time you see them. Just be aware that if you menstruate they’ll probably dismiss it as anemia due to your period

as for the compression socks, they work best if they’re longer, like calf length, but I have ankle length ones that are nice as well

talk to your school nurse or counselor to tell them about your concerns- if 504s are a thing where you live, ask about getting one

Sorry this was so long, but I hope it helps!!

Potsies help I need advice

I'm not diagnosed but I very likely have POTS and I'm in a flare. I have no accommodations or anything since my parents don't really believe me.

I have to bike 30mins to my school, and we have mandatory exercise 3 times a week. How the hell am I gonna survive this?

I have sports socks that are kind of compressing, and I can take salt to school. Is there anything else I can do that might help?

Thank you so much.

I think I dislocated my shoulder but I’m too tired to pop it back in so that’s gonna be morning me problem

officially got diagnosed with POTS today 😎

(and had another physiotherapist take a look at my joints and skin and go 'yeah that's... that's bad and looks suspiciously like hEDS but i dont have the qualifications to say for sure, sorry')

this comorbid disorder sh*t is a pain in my... well, everywhere, but t least i know i'm not misreading my symptom set :) that's a relief at least.

we meet another specialist tomorrow

...he's the last option in our region before we've run out of clinicians who will help.

I have one appointment with him, and he made it very clear he doesn't want to see me afterwards because I already have input from a pain specialist...that pain specialist has been close to pointless.

Wish us luck!