Ehlers Danlos Syndrome (EDS)

[west scroll]

ok yea you're probably hypermobile then

but you should definetly bring it up with the fact that you're having joint pain

[plush creek]

my thumb touches my wrist also. I’m going to bring it up since I have some genetic testing stuff to do, blood tests canula, unfortunately, but my doctor was already asking me about that. I’m thinking fibromyalgia is also a possibility

[sudden geode]

I might have it too, nothing confirmed

[sharp kayak]

im being tested for eds!!

[west scroll]

I wish you the best of luck!

[sharp kayak]

Tysm!

[cinder nimbus]

Yes, luck is wished!

[cosmic socket]

Hi guys

[fierce saddle]

Hihi

I have been very abled body today and its been very nice

[tulip coral]

anyone else with eds just have to bum shuffle everywhere when the pain gets real bad?

[opal charm]

I kid you not I JUST did that

[tulip coral]

lmfao

it's never normally this bad for me but the past week i've been in agony

having to skoot along the floor

[rare sierra]

GG @tulip coral, you just advanced to level 1!

[tulip coral]

but i wanna go make a pot noodle so no idea how i'm gunna manage that

[opal charm]

Scoot up a step ladder and use that as a chair?

Unless the stove is too high

[tulip coral]

we dont have one of those

i just need the kettle

[opal charm]

Chair?

[tulip coral]

i think i'll be able to manage standing to turn the kettle on and then i'll sit down again

[opal charm]

Personally I'd just levitate /j

[tulip coral]

so real

i havent got that update yet /j

[opal charm]

Have you turned yourself off and back on again?

[tulip coral]

yes😔

i just sneezed and split my lip????

oh oh i was thinking of getting like LED lights for my wheelchair but idk what ones are good

i think my wheels are 24"

[cosmic socket]

Today my EDS is starting to be mean to me (I’m in a flare up)

[tulip coral]

me too :/

[opal charm]

I always flare up in spring, it sucks

[fierce saddle]

That sucks

[cosmic socket]

Mhm

[surreal brook]

my eds decided week of opening night for theatre was the perfect time to go "WHEEE FLAREUP"

[cosmic socket]

Why is it painful

[nova apex]

rheumatologist appointement update if anyone cares /neu
(it was exactly 2 weeks ago)

so. it went really well !!!!!!

the rheumatologist was really nice, and i got really lucky bc he actually works with an hospital center specialized in EDs (as in Ehlers Danlos syndrome, and hEDs stands for hypermobile Ehlers Danlos syndrome). so he knew about EDs.

mind you, i made a 6 pages long recapitulative sheet/list of all the symptoms i could think of and i knew of. he said he was really happy i made that, he said it made his job much easier and would make us gain a lot of time. so yeah im really glad i did that :]

so we started the appointement by chatting a bit, he asked for family background, physical activity, school and work, then he asked why i came to see him. i told him we have a high suspicion of hEDs and i came in to get answers.
he asked me a few more questions (do you sprain things, dislocate or subluxate things, have hematomas, have unusual ||scarring||, he also asked for a heart exam since there's a vascular form of EDs and he needs to make sure its not that).

then we went on to the physical exam. he made me pass a beighton quickly (and said i score 9/9), then he tested my skin and said i had stretchy skin (which i did not know). he put me on a table and started examining me more, testing my hypermobilitly in each of my joints not considered in the beighton like my hips, ankles, shoulders, etc. at some point i said "you know you can push even more far, im hypermobile i can go more far than most people" and he replied "oh yeah i feel that. you know, i wont push more because i can feel you're so hypermobile, i could dislocate any of your joints in 2 seconds if i wanted to". welp-

so yeah that was the exam. then we got back to the desk and i asked him "now what". he said that as a rheumatologist, he can't diagnose me on paper. its not his job. however he thinks i 100% have hEDs and that im a case he would give to rheum students because of how obvious i am (sob).

he reffered me to the specialized hospital center so i can get a diagnosis. but he basically said "yeah you definitely have hEDs".
so yeah, now im waiting on that apopintement with the hospital center, which is gonna take between 4 months if im lucky and 1 year if im unlucky. i'll keep you all updated. but i have hEDs.

(i just need it to be on paper so i can get compression clothes and stuff to try to help with the pain and joint instability because in france, you need to get them prescribed and if im not diagnosed they wont prescribe them)

[west scroll]

I glad it went well!

[opal charm]

How to do finger splints?
Our dad just made us hold two wires together tightly and we did but a couple of our finger joints are hypermobile and so they bend backwards and now they hurt D;

[opal charm]

⊹ Charlie !! He/Any Neos ‹3 ⊹₊˚ 💌 ᵎᵎ ↩️

[Reply to:](#1146106956621303908 message) It was super easy

Thanks

I’d kinda feel bad making some though.
Our fingers aren’t as bad as yours. But obviously hypermobile conditions are different between people

Don't feel bad

If you need them, you need them

I also don’t know what our dad would think

It’s literally just for our pointer fingers though

Our others bend back but not painfully

If he responds badly just say they're cool looking rings or something

Or tell him to deal with it idk /j

Haha

Where could I get the stuff to do it with?

Some dollar trees have wire you could use

We also need to convince him to let us have knee supports as well - we have a 50km walk coming up

This is what I used

Hmm

Mine was a little thick though, it was hard to bend

I think I know where I might get that here

(We live in the UK)

Yikes, good luck

Unknown Fronter(s) 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) We also need to convince him to let us have knee supports as well - we have a 50km walk coming up

It’s in 2 months. So we have time to do physio etc. before it.

At the moment we’re close to needing a cane or something to be able to make it through some days

But it’ll be finee

Please get the cane-

[nova apex]

why is it french

[opal charm]

If our dad won’t let us get knee supports, do ya think he’ll let us get a cane..?

For shiggles idk

aster-tje ↩️

[Reply to:](#1146106956621303908 message) why is it french

We just bought a binder as well so have no money

Secretly get a cane and hit him with it 👎 /j

Unknown Fronter(s) 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) If our dad won’t let us get knee supports, do ya think he’ll let us get a cane..?

My dad won't let me get crutches and it's lowkey making me miserable

Mmm

We’ll see how we go. We’ve had virtually no pain up until now today, so they may be getting better

We’ll see how our walk goes tomorrow

(Doing 5km ish)

Do ya know how thick it is in mm?

⊹ Charlie !! He/Any Neos ‹3 ⊹₊˚ 💌 ᵎᵎ ↩️

[Reply to:](#1146106956621303908 message) This is what I used 📎

Or nah

Is it craft wire?

Also would it be worth it?
This is our finger

Oml

That looks worse than I thought it did

Ok

Yeah

[spring swan]

wait thats not normal? 😭

[opal charm]

Nope

[spring swan]

erm..............................................

[opal charm]

Umm

My fingers

That's not normal?—

Just checked my mom's fingers. Hers don't do that

[violet zenith]

Okay I don’t have EDS but my hip popped so loud that my mom could hear from rooms away from me and it hurt so bad it took my breath away 😭

[fierce saddle]

Bro i lent in my arm agaisnt the cusion bit of the couch for like a minute and my hand went purple 😭

[violet zenith]

hyper mobility is a no for me

[opal charm]

Could someone send a photo of what a finger is meant to look like when it is pressed?

[opal charm]

No hypermobility (little bend)

Hypermobility

[nova apex]

r u sure about that one ? i think not hypermobile should not go back at all ?

[opal charm]

Fingertips naturally have a slight backwards bend to them, some people don't have the bend at all but a slight bend is normal for non-hypermpbile people

Anything more than roughly 10 degrees is classified as hypermobility

[nova apex]

ahh didnt know that! ty!

[opal charm]

‼️

[nova apex]

yeah i knew that for other joints but just learnt that abt fingertips

tyyy

[opal charm]

Ofc :]

[cyan plover]

guess I'm hyper mobile jow 😭

[opal charm]

So would ours…?
I think they’re more than 10 degrees

⊹ Charlie !! He/Any Neos ‹3 ⊹₊˚ 💌 ᵎᵎ ↩️

[Reply to:](#1146106956621303908 message) Anything more than roughly 10 degrees is classified as hypermobility

Maybe 45 degrees or smth I don’t know

I ordered some craft wire though

[dense wren]

So we have hyper mobility in only our pointers. Huh. They just be bendy lol

[fierce saddle]

Im kinda confused if my knees sre hypermobile or just really painful to walk sometimes and like to lock alot

[opal charm]

Can anyone do I think it's called shrimp or something idk

Like middle finger over index, ring finger over middle and pinky over those

Might be disturbing lol

[nova apex]

yes

[opal charm]

Boo

Can you do this though?

[fierce saddle]

How do you do spoiler again

Not my fingers loosing circulation (doesnt hurt tho)

[fierce saddle]

I tried to figure out how to do that but im not sure which fingers are which

[opal charm]

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) I tried to figure out how to do that but im not sure which fingers are which

Ignore my nail polish, I only wear it to pick it off when I'm bored or need something to pick at

[fierce saddle]

Argh

The photo

Yea no

My pinky isnt pinkying

??

[opal charm]

I wanna try

Hold uo

Gotta figure ot how

[fierce saddle]

This video

[dense wren]

Yes

[fierce saddle]

My pinky is so short tho 😭

[opal charm]

Help

My fingers

[fierce saddle]

I think i got it

[opal charm]

Don't think I can

[fierce saddle]

Welp

[dense wren]

That big bunch is a no go. Unsure how to even do that

[fierce saddle]

Welp

[opal charm]

Dk

Can't feel my fingers

[fierce saddle]

✨circle✨

[opal charm]

Have nails on sooo

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) ✨circle✨ 📎

[fierce saddle]

Yea

Ive genuinly neever worn nails

[opal charm]

Did I do it?

Mara | They/she 🎶 ↩️

[(click to see attachment)](#1146106956621303908 message)

[fierce saddle]

Im not sure

I think you have to tuck them more????? Not sure how i did it

[opal charm]

Lol don't. Its pain

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) Ive genuinly neever worn nails

[fierce saddle]

Welp

[opal charm]

And if you hit them it's the end

[fierce saddle]

Wasnt gonna

[opal charm]

Maybe

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) I think you have to tuck them more????? Not sure how i did it

Pinky hurts so bad

[fierce saddle]

Ah yea

Stop for a few mins

[opal charm]

Good XD

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) Wasnt gonna

I'm not doing it rn

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) Stop for a few mins

[fierce saddle]

Transmasc 😎

Ok

[opal charm]

Lol

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) Transmasc 😎

I did this earlier today actually

Can go further

But with nails can't

[fierce saddle]

Maybe put a blur thjng on it

Just cause it might make people uncomfortable

[fierce saddle]

I do it as fidgeting lol 💀

[opal charm]

Oof

Not good

[fierce saddle]

Yes

Oh well

[opal charm]

Finger feels better now

[fierce saddle]

Thats good

My shoulders are also wuite mobile

I need to go clean

[opal charm]

Alr

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) I need to go clean

Oop

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) My shoulders are also wuite mobile

My knees do funny stuff

Sorry for ping

[fierce saddle]

I think mine do, pain in my ||arse||, stupid knees

[opal charm]

Lol fr. They be subluxating when I get up from my locker.

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) I think mine do, pain in my ||arse||, stupid knees

My locker is on the ground so when I get up it literally pops out of place

And leave me limping for a bit

[fierce saddle]

Ow

Mine dont pop out

That sucks

[opal charm]

It doesn't???? Literally crying

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) Mine dont pop out

Maybe I should actually try to get a diagnosis

[fierce saddle]

Yea

As far as i know my only joints that i know definitly pop out are my thumbs

Maybe my shoulders bt im not sure

[fierce saddle]

The shoes im wearing now are so not good for my ankles, my ankles are like falling inward rn😭

[minor lynx]

I thought it was normal

My fingers can almost bend 50 degrees backward

(Pinkie can go 90)

[opal charm]

Got the wire. Now need to steal our dad’s wire cutters

Damien 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) So would ours…?
I think they’re more than 10 degrees 📎

Without vs with

I think it need a bit of adjusting but it is better

Our mum wants to know what we are making with the craft wire…

What do we say?

I mean she knows we have hypermobile issues

Or should I make a cat rq out of it and send a photo of it to her?

These are gonna take a bit of getting used to

[opal charm]

I made two, one is shorter than the other.
Would you say a shorter one or a longer one is better…?
I can bend my finger more forward with the shorter one but the longer one is more comfortable until I bend my finger

[opal charm]

When was someone gonna tell me it’s not normal for it to hurt when you pick stuff up?

I mean good thing that the splints stop the pain

[opal charm]

My fingers lock like this a lot

Damien 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) When was someone gonna tell me it’s not normal for it to hurt when you pick stuff up?

I mean good t…

That's painful

[violet zenith]

where can u get those

[opal charm]

I got the 1mm aluminium wire from amazon, and it can be cut with scissors.

Let me find the message on how to make em

(Screenshotted it yesterday)

[violet zenith]

tyyyy

[violet zenith]

Heyyyy!!!!

[opal charm]

Hi

[vestal prawn]

Hii

[cosmic socket]

Hi

[opal charm]

hi

[cinder nimbus]

Hi

[fierce saddle]

Hi

[obtuse canopy]

Yo me too! Everyone stares in confusion lol

[violet zenith]

Lol

[fierce saddle]

Yo

My hand is like partially paralzed atm and i put it to my heart to surculate but its so splotchy😭

[violet zenith]

Oof

[opal charm]

i have EDS hello fellow people

[violet zenith]

Hello! Stepped off my bed, ankle gave out. Managed to skip most of gym cause the high jump wasn't doing my knees any good when I could feel them feeling almost loose

[nova apex]

"handwriting cant be that hard. can it?"

okkk ive got this yesss"

"nvm my hand started cramping lets just. switch to computer"

im trying really hard and i wish i could create pretty study sheets. handwriting is really painful and my hand cramps up after a bit :(

its alright, it can be as pretty on computer :)

[silk zealot]

your handwriting is gorgeous, it’s frustrating that your hands cramp :(( (but yes it’s pretty on computer too hehe)

[nova apex]

thank you sm!

[nova quiver]

Anyone have any idea how to stabilise weak hips? Mine are super flexy and bothering me

[nova apex]

no idea. KT tape maybe?

tbf hips and shoulders look like the msot annoying joints to stabilize bc the braces options r weird and dont look comfy at all

looks like it'd slip

like. 1. does that actually work and 2. it looks like absolute sensory hell

[nova quiver]

Yeah they look like they wouldn't actually be much help :/

I'm normally not too bad but I've been wobbly recently anyway

[opal charm]

The first one did vaguely help but it hurt to wear

aster-tje ↩️

[Reply to:](#1146106956621303908 message) like. 1. does that actually work and 2. it looks like absolute sensory hell 📎

[fierce saddle]

My elbows arent hypermobile but they do lock really really easily, could this be in realtion to this?

[opal charm]

How do you ask your parent for knee supports and/or walking aids

[cinder nimbus]

That's a really good question, and not an easy one. Obviously, this depends a lot on your parents, and the kind of people they are. If you happen to be fortunate enough to have access to someone else's walking aid (a grandparent's cane, etc.), asking if you can try it out while they're sitting etc. might be a way to visually demonstrate that it'd be helpful to you, but that's a very specific set of circumstances that you likely aren't in. Even if you can do that, the reality is all you can do is ask. Do your best to communicate how much your knees are bothering / hurting you / being unstable, how unsteady or unsafe you feel walking (bring up any falls if you tend to fall). Don't be afraid to ask multiple times, or to bring it up every time you have a fall or a problem. Once you have introduced the idea, you could even show examples on Amazon, etc. At the end of the day, it'll come down to them, and if they won't help, it's not your fault. All you can do is ask and keep on asking

[opal charm]

Alright.
I mean, our dad’s friend has a cane to help her and we might be able to try it out. But we’re not seeing her until 25th May.

I’ll try talking to my dad when is gf gets here as I feel like that may make it easier.

[violet zenith]

Has anyone else lost circulation in their pinky for me but other finger/fingers and had a hard time like typing or moving other fingers? It happens to me a lot and it just happened. Just kinda curious now

where do u guys get the metal wire stuff for the finger splint things

[nova apex]

you can find it at big shops like target or places like that

if you buy on amazon, you can also get it online

[violet zenith]

oooh oki!!

[cinder nimbus]

That's thinking—good luck to you. This community is here for you regardless

[nova apex]

ring splints tutorial!!

https://www.tiktok.com/@cheese.named.kyle/video/7364491553517145374?_t=8m51skHvHge&_r=1

[nova apex]

@cyan plover could you pin this /nf

[nova apex]

thank you 🫡

[violet zenith]

TY

[violet zenith]

Lost circulation again lol

Happened 2 more times

[nova apex]

hello
i am hyperfixated on kpop
it is absolutely great and i love it
however
i would LOVE to learn the dances
but my body cant
everytime i try to dance, i end up with a few subluxations (which i get really really often), a lot of pain, and overall unwellness because i get overheated super fast and i dont handle heat well at all
so
im a bit sad /lh
however
ive seen a few people wheelchair dancing
and it does seem a bit more do-able since i mainly get subluxations in my hips and my knees are pretty unstable aswell.
the shoulders will still be a big issue, but if we get the legs out of the way, maybe i can do it
i do not have a wheelchair tho but i could just do it on a regular chair

so yeah. anyone struggles with sports (not necessarily dance) too? do you have any tips to give? how do you deal with your body?

[nova quiver]

honestly my best advice is get a physio therapist if you can!! strength training around your joints will help you generally but also in sports

lots of water, use braces if need be, listen to your body. ache is ok, sting is not

if youre jumping make sure you bend your knees when you land to soften the impact on your joints

you need to trust your body to dance smoothly but to have trust you need to be strong enough

learn your warning signs and avoid repetative intense movement

[nova apex]

i have a physiotherapist and its not helping 😭 i actually cry during most my sessions /lh

[nova quiver]

aw man I'm so sorry to hear that! have you voiced your concerns? what are your goals with physio?/nfta

[nova apex]

i dont have any braces (yet). i think i have to wait to be fully diagnosed to get them? ill ask my GP next time i see her tho. my rheum told me i have to try compressoin clothes aswell

[nova apex]

yesyes ive told her, and she was like 'welp idk what i can do to help you youre too hypermobile and in too much pain for me' i was like ok-

[nova quiver]

compression is great but try to not wear them all the time as it can make you sick if you suddenly stop!

[opal charm]

Tell coaches about your issues, ask for accommodations. Carry meds, braces, water, and small snacks with you. Compression stuff also helps. If something is too much, ask for accommodations or adjust to your disability. Ask for breaks if needed, they are SO important and if coaches know about the disability they should be super understanding

[nova quiver]

respecfully, that is not a good physio. when I have a minute I can ask you what exactly you struggle with and give you some of the exercises I was given? My physio is lovely and spcialises in chronic illness :)

that reminds me I should really call him-

[nova apex]

im not in a club haha its really just my silly little brain who craves to do silly little dances /lh

[nova apex]

ooo yeah id like that i think

[nova apex]

do it now! /nf

i also should call my physio-

havent seen her in like a month or 2

[nova quiver]

ofc! if you have any specific questions idm asking when I next see him?

[nova quiver]

astie darlin it's sunday and tmr is a bank holiday he will not get my call haha

[nova apex]

um how to achen't and how to stable joints /hj

[nova apex]

im bad at days 😭

[nova quiver]

haha thats ok

[nova quiver]

haha I get you. I did a lot of strength training when I started physio! most of mine was focussed on basic core strength and hip/shoulder stability. does that sound useful to you?

[opal charm]

can I have that

[nova apex]

honestly hips and shoulders r where i get the most (daily) subluxations so yes. i do think it sounds helpful-

[nova quiver]

oks!

[nova quiver]

for sure I'd have to look back tho as this was last autumn

[nova apex]

tys ‼️

but yeah ill prob have to look into braces and ask my GP

[violet zenith]

The only sport I get subluxation from is getting up from my locker. My knees are that unstable XD

[nova apex]

i cant walk :') /srs

[violet zenith]

Oh no! Are you ok???

[nova apex]

no /lh /nav

im gonna go to sleep early and hope my body will fix itself before tomorrow morning bc i have final exams and i have to go to uni for that

[violet zenith]

I hope everything goes well! /gen

[nova apex]

thank you, i really appreciate it /gen /p

[violet zenith]

Np!

[opal charm]

Just learnt that our kneecaps move…

[violet zenith]

Oh. Um. Not good.

[dim perch]

Hi, I’m a bit nervous but also very excited because I’m getting a wheelchair in a couple of weeks. Does anyone have any tips or advice regarding wheelchairs at school? I’m not really scared of people judging me or just staring at me, but more about people asking me questions. Like I’ve been chronically ill my whole life but people never notice cuz u can’t tell from just looking at me. So whenever I’m using crutches at school I’m always met with the “OMG WHAT HAPPENED, ARE U OK?” and I can imagine it gets even worse with a wheelchair. But that might just be me. Does anyone relate?

[opal charm]

We’ve never had anything more than a knee support, but I’d assume that if they did that, you could just tell them that you have chronic pain/whatever and will sometimes need the wheelchair.
Or you can alternatively just tell them to f off and that it’s none of their business.

[dim perch]

Yeah I guess that’s true. I usually just say “well, I have a problem with my joints and experience a lot of pain” because that way people kind of understand and just move on with their day. Whereas if I explain that I have a chronic illness, they want to know my entire medical history and stuff like that, which is a weird question and I don’t owe people an explanation.

[opal charm]

Yeah. It’s weird how you are allowed to be “in a lot of pain” but not have “chronic pain” or a “chronic illness”

like without telling your entire history to everyone

[cinder nimbus]

I can't say I have experience with a wheelchair at school, but I will say that everything I've experienced with how people have treated me on crutches in the past tends to be heightened when I'm in my chair. Personally, though, with the spaces I frequent, I find the wheelchair makes a lot of people keep more of a distance, I dunno, so maybe you can hope some will leave you alone, haha. I know that's not really what you asked, but yeah, I'd say what's basically been said, you can always say joint problems / pain. I personally tend to just go, "Because I can't walk," with a wry grin, hahaha

[novel wyvern]

I have a lot of experience with being in education environments with a wheelchair. I found people often offer to push the person in the wheelchair around but obviously make sure that your comfortable with it and if your not just say no thanks and if they don’t listen I usually say can you please get off my chair until them do. People often ask me if they can have a ride in my wheelchair and I always decline, obviously because I really need it and I just find it a bit rude that people do that, a good amount of people also stare at young people in wheelchairs but I would just ignore it (it’s hard at first but after time it gets easier and don’t let it get to you either). Try make sure your wheelchair fits under the desk/table because they don’t always fit which can make learning more uncomfortable (I usually stay in my wheelchair so I notice it often). People also don’t always realise there is a wheelchair so that can get annoying quickly. That’s all I can think of for now. I have spent 5 years in school with a wheelchair and 3-4 years in higher education in a wheelchair and I find most of these things happen in both environments

[dim perch]

Thank you so much for your advice and sharing your experience! It means a lot!

I hope everything will turn out all right for me and I think it’ll get easier over time 🙂 Hope you are doing well❤️

[dim perch]

Thank you for sharing! Every response is helpful for me!🫶🏽

[cinder nimbus]

Glad to hear it, Ida! You take care, I hope things go well for you. It'll work out in the long run, I'm sure, one way or another

[steep pagoda]

How can I get my physician to actually take my hypermobility issues seriously?

[dim perch]

I’m sorry to hear that your physician doesn’t take your hypermobility issues seriously. Do you experience any pain from it? Or do you experience dislocations or anything similar? Because I think that’s a “good” start since it shows that it affects your daily life. Usually medical professionals only want to treat patients who struggle with something enough to affect their everyday lives. This is quite messed up in my opinion but I still somewhat understand since there aren’t enough resources available in the healthcare system. I hope you get the help that you need! 🫶🏽

[dim perch]

Thank you to the alter who wrote this!! Just sharing helps me a lot ❤️

[violet zenith]

Did some research on GI issues that come with eds/heds. I have a lot of symptoms. Imma actually talk with my family doctor. If anyone has anything to share about the GI symptoms lmk

Also the swallowing. Felt like I couldn't breathe when I couldn't swallow and would panic. Had to bring water with me to force myself to swallow

[dim perch]

Well, I struggle with GI issues quite a lot. At the moment they haven’t figured out what’s wrong but for me my symptoms are mainly stomachache, during and after eating, and nausea which makes it very difficult to eat. For a while I used to drink those nutritional supplement drinks because I couldn’t eat any solid food and I lost weight etc. we did a lot of tests to see if I have gastoparesis/ delayed gastric emptying but it never showed so I still don’t have an answer

[dim perch]

Yeah that seems very stressful. I’m sorry. I wish I had some advice for you but unfortunately I don’t, since I don’t really struggle with the swallowing. But perhaps there are other people here who do?

[rare sierra]

GG @dim perch, you just advanced to level 2!

[violet zenith]

I sometimes get nauseous after eating. The first time was the worst when I was barely keeping the food down

[steep pagoda]

All the time ... I constantly sublux and dislocate. But she still wont listen

[dim perch]

Oh really. Im so sorry to hear that

[steep pagoda]

Yeah. "Oh its your hisp"

[rare sierra]

GG @steep pagoda, you just advanced to level 1!

[steep pagoda]

*hips

I said my joints ALL do this

[cinder nimbus]

I'm sorry to hear that, I've seen many, many doctors and know this experience personally. My only real advice is to keep trying new physicians as is possible, and work with as much as they'll give you. The note someone else said about pain is a good one—gunning for some sort of a referral could be helpful (although pain clinics are notoriously hard to get into). Bottom line, a regular MD isn't going to know how to treat hypermobility, so you'll have to find one that's willing to refer you to a specialist

I wish you the very best of luck, it took me years to get effective help, but I wouldn't be where I am if I hadn't been stubborn enough to keep looking and trying

[violet zenith]

Oof I have track and field for 3 hours. My knees are already crying

[opal charm]

Oh no, do you have any knee supports?

[violet zenith]

Nope

[violet zenith]

Wait—is it not normal to lose circulation in legs after standing for a bit and they go numb and you struggle to move them but still can move them?????

And people don't roll their ankles from simply walking??? I definitely need to see my family doctor

[dim perch]

From my understanding it is not. I thought so too before I was diagnosed with EDS and POTS.

[violet zenith]

Welp

To the doctors it is

I'm starting to see more and more symptoms. Also side note 10 hours of sitting cause of traveling and around my waist is completely sore and hurts to move

Aannndd I just find out I can move my knee caps out of place

[dim perch]

Oh I’m sorry. That must be painful. But yeah, definitely talk to your doctor if possible

[violet zenith]

S ok and yes I will talk with my doctor

I'm back!!!!! Soooooo

• I can move my knee cap out of place

• Lose circulation from standing too long

•Can see where circulation was cut of when something puts pressure on my fingers (not really noticeable in other places cause I'm black)

• Sitting for long periods of time = soreness

• Shoulders and especially elbows Pop and crack a looootttttt

• Nausea after eating sometimes

• Tw: ||emetaphobia||
Randomly woke up the other night ||threw up|| a bit, ||swallowed|| then went back to sleep

• Painful flat feet. (Cramps from walking flat on feet)

[dim perch]

It is definitely worth checking with your doctor regarding these symptoms!!

[violet zenith]

Yea. That's what I got from research

[nova apex]

no they do. it happens to everyone. what matters is the frequency and the consequences of it

[nova apex]

definitely. if you are able to get checked, theres no harm in doing so.

[violet garnet]

i was talking to my therapist today and i have had a bit of trouble not wanting to sleep but wanting to sleep lately and she asked h long does it normally take for you too fallasleep and i said anywhere from 1-2 and a bit hours but its basically always been like that, and then i got told that i probably have some sleep thing that isnt insomnia but has insomnia in the name- but could the sleep thing be realted to hEDS

[violet zenith]

Everytime I walk I feel my ankle move out of place. I mean every time I walk. How much it rolls is about 76-89% of the time

[novel wyvern]

You can get sleep problems with hEDS

[violet zenith]

After water bottle. Wasn't holding it long. Lasted like 40 minutes

How long should it take?

[violet garnet]

idk

not 40 mins

[plucky trout]

Hey ! I have some symptoms that finally lead my doctor to consider that I might have EDS, but a neurologist I previously saw talked to me more about seeing if it could be FND. So I wonder : is there a way to know for sure that I might have rather one than the other ? Do some of you have both ? Which health care specialist have been the most able to do a diagnosis of EDS for you ?
Anyway, I'm a bit lost so I'm mainly hoping to have your perspective ☺️

[opal charm]

I’d say that EDS (if it’s Hypermobile EDS) you’ll have hyper mobility issues and weakness issues. But for FND it would be weakness issues

Don’t take my word for it though

[plucky trout]

Ok ! Thanks for the answer ! 💭☺️

[rare sierra]

GG @plucky trout, you just advanced to level 1!

[novel wyvern]

I have hEDS I was diagnosed when I was 4 years old now at the age of 19 I have just been diagnosed with dissociative seizures and I’m waiting to talk to my neurologist again but everyone that has seen my symptoms say it’s possible that I could have FND (I do have a lot of other medical conditions) hope this helps

[plucky trout]

Ok ! Thank you ! ☺️ It is helpful indeed !

[novel wyvern]

Np if you want to know anything in more detail just let me know

[nova apex]

i dont understand whats the issue? /gq
the goosebumps or the round mark?

[nova apex]

you can def have both. like its physically possible to have both

[opal charm]

Anyone else feel guilty for using supports?

[plucky trout]

Ok ! Thank for the answer ! I don't know a lot of people with these conditions, so it's really helpful to have your perspective!

[dim perch]

Yess me

[opal charm]

Like we need them due to pain, but we feel guilty for using them

[novel wyvern]

A bit but I’ve been in them my whole life

[rare sierra]

GG @novel wyvern, you just advanced to level 7!

[dim perch]

Yeah, relatable

[novel wyvern]

I have a few due to pain but I have others that physically help me move

[opal charm]

Yeah. The only supports we have are two knee supports that help both with pain and mobility

[novel wyvern]

Leg and arm supports for me and a wheelchair

[opal charm]

Yeah

[violet zenith]

The mark. Water bottle was barely on my leg and it was there for like 30 minutes as I said barely an pressure because I was holding it and it was on my leg for stability, and it left that red mark it was taken in a car so its dark. The mark was there for like 30-40 minutes after

Also I was sitting yesterday watching a live show they show for entertainment at the hotel (I'm in Jamaica) and after I got up my legs hurt so bad that I was almost crying. Like walking was difficult and it was also very loud. Noise cancelling headphones would have been nice....

[nova apex]

OHH i misunderstood i thought u said the bottle left a mark after sitting on ur leg for 40mins and i was like 'yeah that makes sense' 😭 /lh

[violet zenith]

😭😭😭

[violet zenith]

Just remembered I used to get days when my whole leg would hurt and I couldn't walk. I had to stay home from school and I could barely limp much less walk

Anyone have any idea what that could be?

And no it wasn't like a cramp

[cinder nimbus]

Did it go limp, closer to, say, a noodle? I get that in my legs from FND, sometimes

[violet zenith]

Yea kinda. Everyone I stepped on my leg it would give put and I'd have to catch myself. But it was only one leg and happened like 3 times in my life. Last time being like 2018

[nova quiver]

Possible hip dislocation in your sleep?

[dim perch]

To me it sounds a little bit like FND

But it could be EDS as well

[jovial remnant]

Why did my shoulder have to subluxate todayyy

Not convenient

[dim perch]

Ouch I’m sorry

I hate when my shoulders subluxate

[violet zenith]

It didn't hurt at all

[violet zenith]

I don't think so because that would be the only symptom but it doesn't hurt to research

[violet zenith]

There was no pain. Just leg giving out when I try to stand

[nova apex]

u said ur whole leg was hurting tho? /gq /neu

[violet zenith]

My memory is different from different members of our system lol. Ok let me re tell the story.

I woke up one morning and felt discomfort (not pain). I tried to get up to hey ready but my leg was giving out and I felt that discomfort. I asked and ended up begging my dad to stay home because i knew if i went to school my leg would bother me and i was limping the whole day i was home and was crying (not from pain, but from helplessness since i couldn't move much)

[violet zenith]

^^^

[violet zenith]

^^^

[cinder nimbus]

Yeah, I def hope you're able to get in to see a doctor about it at some point, that sounds really. rough

[cosmic socket]

Do you have any advice for a flare up

[cinder nimbus]

Gosh, I wish. Whenever a joint is giving me trouble and won't stay in place (I'm not diagnosed but EDS runs in the family, so we think I likely have it, hard to test for because of frequent stiffness from my FND, but I still dislocate), I wrap it with, like, a wrap you'd use for a sprained ankle. There's a lot of ones you can get, some even have velcro so you don't need a safety pin. I have the advantage of someone to help me with this, but it does help the joint sort of "set" for me

[opal charm]

i have joint supports which help with dislocations but with the pain i have no tips sadly

[west scroll]

advil, water, ice, epsom salt bath, braces or kt-tape (mobility aids)

[cosmic socket]

Thank you

[dreamy cliff]

my shoulders and ankles love subluxing and I don't really know what to do

I tried kt tape and it didn't really work

I probably put it on wrong though

[opal charm]

our hip keeps popping out😒

[cosmic socket]

I can’t feel my leg

[violet zenith]

Oof

My shoulders are getting unstable

Felt em pop

[violet zenith]

I dont have eds but my knees and shoulders just pop randomly, no matter what I’m doing

[nova apex]

so

you know that wiggly unsteady teeth feeling

im actually getting worried bc 1 definive tooth actually hurts p bad and it feels really unsteady

now why am i asking here

bc as most of you prob know, EDs being a connective tissue disorder, gums being a connective tissue, ofc my gums are fucked up /lh

so um

im freaking out and hoping im not gonna lose a tooth

which i dont think will happen. i think (i hope) its prob just really bad pain. i clenched my jaw too hard dor the past 2 days so. that doesnt help.

but yeah. anyone else experiences this ? issues with teeth, especially with gums ? (i also have frequent gingivitis, since i was a kid)

aaa

[jovial remnant]

My teeth have always been weird (diagnosed with hsd but suspected heds) i didnt have enamel form on a couple of my teeth and had them taken out a couple months ago (i felt so guilty until i found out they grew i that way) i also have a lot of dental anxiety now too

[violet zenith]

Bruh got to go to the doctor today and he said I'm not hypermobile. (He was very dismissive)

Like what more do you want from me?????? He said my knees didn't bend far enough too like hello?!?!?!

[rare sierra]

GG @violet zenith, you just advanced to level 12!

[novel wyvern]

How far do your knees go if you don’t mind me asking

[violet zenith]

Not that far but he made me touch my toes and I did (without beding my knees) and according to him they didn't go far back enough

[novel wyvern]

Can you get your hands under your feet without bending your knees

[violet zenith]

I didn't bend all the way here

[novel wyvern]

Ok

[violet zenith]

Nope

Wait

Lm try again

[novel wyvern]

I can tell what the doctor meant with your knees going back there is a degree that they have to go back to count

[violet zenith]

I went for mostly autism assessment and I gave him a paper I wrote why I thought I am autistic on. He read the first sentence and said you're not autistic

[novel wyvern]

What type of doctor was it if you don’t mind me asking

[violet zenith]

Pediatrician I think. (I was not aware I would be getting an assessment until I was in the office)

My family doctor recommended him

It's not like I'm hoping to get diagnosed with eds, but I constantly injure my ankles and knees in gym at school and from standing up from my locker which is on the floor and from jumping off of a table 2 inches from the ground

I also notice that when I'm walking I have to walk on the side of my foot because I get a cramp like in my foot and I can't walk or it hurts a lot. (I have flat feet)

[novel wyvern]

If you think you have eds it would be best to see genetics because they can tell you more and run any tests

Or rheumatologist

[violet zenith]

He's sending me to a psychiatrist. It's for the autism part though

[violet zenith]

I will when in 18 and away from my mother who I cant communicate with to tell her

S not my fault I can't communicate but whatever

I will when I'm legally an adult

[novel wyvern]

If you need to talk to someone just ping me and I will try to help you

[violet zenith]

Ok thank you! /gen

[nova apex]

your knees look like they hyperextend
however i dont think youre going far down enough? idk.
have u tried the beighton scale ?

the beighton isnt super full but its a starting point

[rare sierra]

GG @nova apex, you just advanced to level 39!

[cyan plover]

I think I can do A, B, D

[opal charm]

love being a 9

aster-tje ↩️

[(click to see attachment)](#1146106956621303908 message)

[pastel sleet]

only a 4 here - knees and elbows, but ik our fingers, hips and toes are hypermobile in a different way to the way that is tested there

[violet zenith]

The doctor is stupid. He pulled my pinky at a 90° angle then said "see? 90° you arent hypermobile."

[nova apex]

what about the rest of the scale tho /nf

[novel wyvern]

Been an 8 my whole life

[violet zenith]

Oh gimme a sec

I know it's a no for elbows

[violet zenith]

Last one is from yesterday but no I can't put my hands flat on the floor

Imma re do pinky

[pastel sleet]

POV: You’re walking a dog

[violet zenith]

Literally what I need in life

[pastel sleet]

Is random weakness and pain in limbs related to hypermobility or nah?
(I have HSD, not sure about hEDS)

Basically my elbow keeps getting sore and the rest of my arm then feels weak.

[violet zenith]

Oofies. My arms/hands are always weak and I have to focus a lot to even use a bit of strength. As for your question it could be

[opal charm]

so real bro

Mara {🎶Orchestra Sys} ↩️

[Reply to:](#1146106956621303908 message) Oofies. My arms/hands are always weak and I have to focus a lot to even use a bit of strength. As fo…

[opal charm]

most people can't, dw about it. Its even hard for some people for with hEDS.

Mara {🎶Orchestra Sys} ↩️

[Reply to:](#1146106956621303908 message) Last one is from yesterday but no I can't put my hands flat on the floor 📎

[opal charm]

my hip dislocated

im in so much pain

any advice

ER can locate it back, tho you could also ask someone around you, or yourself if your able, to pop it back into place. Its gonna hurt but will lessen over time.

not much else you can do, other than pain meds and rest

[violet zenith]

It's actually recommended to not because people have and the bone pinned a vein and blood stopped circulating correctly. Not saying that will happen but its very likely

[opal charm]

Alright, i just said what i do, sorry about that

[violet zenith]

No no it's not meant to be mean. Just saying it isn't recommended

[opal charm]

thanks for the clarification /g

[violet zenith]

Np! I really need to use tone tags

Just didn't want anyone to get hurt /gen

[opal charm]

yea absolutely!!

[violet zenith]

I do this unconsciously a lot. How can I stop? My finger hurts

Its like a stim kinda

[nova apex]

try to replace it. im not good at replacing harmful stims but i know some people can so

[nova quiver]

Have you tried finger splints?

[nova apex]

ooo tru

pinned tutorial 🫡

also also!
i finally have all the info i need to go to a specialized center :]
im trying rn to organize the mass of info i have (i also have to take pictures but i need help with that so its not done yet) but the mail is already halfway done!
i really hope they admit me in and they actually have stuff to help

[violet zenith]

I will try

[violet zenith]

I don't think I can. It's unconscious so I realise too late

[nova apex]

just sent a really long mail with very detailed and organized PDFs with pictures as they asked. i really hope it goes well and i hope i get answers soon

legit 7 PDFs but im happy i got it done

[nova apex]

i wanted to send updates everyday but forgot

to see how long it takes for them to reply

so its been 2 days 🫡

[nova apex]

been 3 days

[nova quiver]

I feel like they could get it to you faster if they walked there and handed it to you

[nova apex]

prob 😭😭

[opal charm]

Legs gave out in gym. I was running. It hurt. Like a lot. (Censored for comfort)

[violet zenith]

That was me. (Mara)

[nova apex]

been 4 days

[nova apex]

been 5 days 🫡

i prob wont have answers for 2 days bc. week-end

[nova apex]

6 days

might call tomorrow

[nova quiver]

Probably a good idea

[nova apex]

i need to call today

aaaaaaaaa

gonna try to. make the phone call. rn. its 2pm in 1 minute so im gonna start calling now since they take around 15mins to pick up

[nova apex]

i forgot

calling rn

they answered in 30 secs?????????? /pos

i asked to talk to sm1 now im waiting

um good thing i called bc they actually didnt get my email

bc there r 7 attachements and it was too heavy

...............

i just lost an entire week

also ive been told they take 3 weeks to treat a request so

im gonna send 7 emails rn

actually 8

1 per attachement + 1 more email for info

and

wait 3 more weeks /vneg

currently separating everything into smaller mails

um

so

ive sent

10 mails total-

and-

they sent me a mail while i was sending my ton of mails

um

they had actually received my original email

which is GREAT because that email was fucking amazing

but i ended up sending them 10 emails anyways 😭

so um yeah 😭

so idk if im gonna get an answer in 3 weeks or 2 since theyve only seen my original email 1 week late.

yeah.

[violet garnet]

oh damn

[nova apex]

yay /s /lh

[tulip coral]

anyone else sprain their hip just by walking?

[novel wyvern]

I subluxate mine all the time

[tulip coral]

yeah me too

my hip had been bothering me for like 2 weeks so i went to A&E and they said i'd sprained it and have some soft tissue damage but i was literally just walking so i have no idea how the bloody hell i managed that

[novel wyvern]

My left going every day my right going at least once a week

[tulip coral]

my hips click when i walk, like when my leg goes behind me my hips click but its the painful clicks not the nice ones

[novel wyvern]

If they sublux a lot then it can cause soft tissue damage

Yeah I know exactly what you mean

[tulip coral]

oh great !! /s

[violet zenith]

This but my knees and ankles

My ankles give out a couple times a week because of gym in school

[tulip coral]

oh god

[violet zenith]

I have a C so trying not to skip too much but damn it hurts

[tulip coral]

can you not get a doctors note or something to say you cant do it?

[violet zenith]

Nope

[tulip coral]

ugh that sucks

[violet zenith]

they dont believe me because im a teenager

[novel wyvern]

Notes don’t always work for gym or pe

[tulip coral]

i would just sit in the like wellbeing bit for PE since i couldnt do it

or i would sit out regardless of what they said

[novel wyvern]

I tried when I had too and if it was something simple they forced me even though I was in pain all the time

[violet zenith]

Yea it sucks

Gotta go i have gym rn 😭

[tulip coral]

see i'm very very stubborn and will not do something if i either dont want to or i'm physically not able

[tulip coral]

good luck !!

i alwasy used to use the excuse of "if something dislocates it would be your fault" and they shut up pretty quick

[novel wyvern]

I’m starting something which will be sharing my story because mine is a really long story with this condition

[tulip coral]

ooooo

[novel wyvern]

I’ve been diagnosed with hEDS since I was 4 almost 5 years old and I’m 20 in 6 days so it’s taking me some time to plan everything out

[violet zenith]

Literally me but my teacher is nice and I don't wanna disappoint him. I've been sent to the office a lot for "disrespecting teachers"

[tulip coral]

oh they did that to me a lot but im also autitic and always had no idea wtf i had done wrong

[violet zenith]

😭I hurt my wrist from extending it just now

[tulip coral]

oh noooo

[violet zenith]

I know what I did wrong because I purposefully did it

[tulip coral]

that is so fair

i also purposefully did it something

sometimes*

[violet zenith]

Ooo if you need help lmk! I have an insta to advocate for these things!

[violet zenith]

I do too

[tulip coral]

i also hate people touching me or coming near me and pushed quite a few teachers over because i was having a meltown and they tried to block the hallway

[rare sierra]

GG @tulip coral, you just advanced to level 3!

[violet zenith]

I really owe all my alters my life cause otherwise I would have been in way more trouble

[novel wyvern]

I definitely will once I’ve fully started it up thanks because I’m not on instagram so it’s harder for me to get the word out

[tulip coral]

i really dont understand why teachers are allowed to like block the hallway and touch students to get them to go where they want them to, it makes no sense

[violet zenith]

Ok! I Literally have no followers 😭

I don't do it for followers tho

Just to advocate for the sake of it

[novel wyvern]

I’m only on here and twitter

[violet zenith]

Touch icky when unexpected

[tulip coral]

touch icky from people i havent given mental permission

[novel wyvern]

Agreed

[violet zenith]

I don't want twitter don't want to destroy my mental health completely

[violet zenith]

Yes!!! This!

Me after ankles gave out

[rare sierra]

GG @violet zenith, you just advanced to level 14!

[novel wyvern]

Fair, I only got it when I did because I was starting college

[violet zenith]

Oh ok

Gotta go

Phones not allowed

[nova apex]

at the end of an average school day, my hips subluxate each step i take.
so yes

[violet zenith]

Wrist still hurt when turn specific way

So well

Somethings off

I'm sure that doctor is having a good sleep rn

[late shale]

When I sit or lay a certain way, sometimes my body pops out of place and I always get weird hurting sensations in my skin, is it EDS?

[opal charm]

Body pops put of place sounds like some sort of hyper mobility.

[violet zenith]

literally me^^^

[violet zenith]

So today I laid down on my bed and my thigh (right below my hip) popped and it hurt for a few hours. My knee caps also pop when I squat (if its fast or slow) so is this bad?

[nova apex]

do you have EDs or are you asking because it reminds you of EDs? /gq

[violet zenith]

I dont have EDS and yes, it reminds me of EDS

[violet zenith]

Just moved my foot a bit and ankle popped 😭

[dim perch]

im sorry, thats always a bit painful 😦 but even when it isnt i get surprised everytime my joints pop hahah

[violet zenith]

Yea^

[nova apex]

been 2 weeks since ive sent the email, 1 week since theyve read it

now i have to wait

either 1 more week (if im lucky)

or 2 more weeks (if im unlucky / more logical possibility)

[obtuse sparrow]

It was suggested I might have this

I have hyper mobility, things heal slowly. Thats what made my doctor think it. Also when I get surgery or injure my joints, they take forever to heal and sometimes just don't completely

[violet garnet]

im trying to do finger braces and their still hypermobiling 😭

i thinkits cuse my wire is made of tin

[opal charm]

They might not completely reduce the angle to <10 degrees or whatever, but they should help a bit

[cyan plover]

why tin?😭 it's expensive, in some cases toxic and it's really soft

[violet garnet]

idk

it said tin

but just emered i have craft wire

so

possible rainbow finger splints

[opal charm]

i just dont do that cause its neverd worked unless its those like steel ones that dont move at all

[obtuse sparrow]

There should be something in the middle

[nova apex]

think i slept in a bad position bc my shoulder. REALLY. hurts. 🧍

i was supposed to dance with friends today. not so sure abt that anymore 🧍

[obtuse sparrow]

I haven't been able to sleep because pain

I am now icing my elbow for the third time tonight.

[opal charm]

Oh no-

[tulip coral]

can someone tell me if my kneecaps are where they're meant to be?💀 they look like they go to the side, also ignore the patchy tattoo i need to get it touched up

[violet zenith]

My fingers have been locking more so fun...

[violet zenith]

I'm not sure they might be. Mine aren't like that but everyone is different

[blissful rune]

It’s normal for your kneecaps to be off-center! You’re all good.

I’d be willing to bet you lean towards being knock-kneed?

[obtuse sparrow]

How do people deal with high pain days?

[violet zenith]

Mother doesn't know cause don't think she will be helpful so I tough it out like rn I'm on my way to swimming and hiding a limp

Maybe relax as much as possible, heating pads cause heat or ice, pain meds if you can, distract yourself

[obtuse sparrow]

Today is one. Yesterday was one too

I just don't feel good recently

I finally got an elbow brace. It does help when I have to be active and do stuff.

[violet garnet]

i am so tired, been doing way too much stuff, also i hurt more then usual cause in martial arts we had to do 2min of pushups and then 2min of sit ups, i need to not do stuff

[obtuse sparrow]

How do people tell the difference between working out pain or stop pain. Like feeling sore after. That's good. But too much is bad

[jovial remnant]

i think ive dislocated my shoulder

i dont want to go to hospital

[obtuse sparrow]

Can you pop it back yourself

If you can then just do that and sling it for a couple days. Then if it doesn't feel better then go

Not a medical professional but just rest can help

[dense wren]

Fun to do imo. Always do it with my fingers. :3

[obtuse sparrow]

Anybody else have jaw issues

Like grinding teeth and messing with my jaw

[nova apex]

been 3 weeks since ive sent the email -> i SHOULD have gotten an answer today.
except its been 2 weeks since theyve READ it -> i will be getting an answer next week.

1 more week to go 🥲

[violet zenith]

It's a stim for us but it hurts because of how far we push it. Which is further than in the picture

[obtuse sparrow]

Today is just a bad day. I am in a lot of pain, I am exhausted, and I just want to lay in bed.

I just want to sit in an ice bath and then sleep

Can people relate to to having those days?

[obtuse sparrow]

How do people deal with having to work, etc. Do stuff when it is just really really really hard. Like you have no energy but you have to push through.

[nova apex]

i cant work and im failing school /lh /nav

[obtuse sparrow]

Can I do anything to help

I can put together a schedule. so you just have to look at a list and do that. Less effort

And I will make it low spoon taking up

I am unsure if I want a formal diagnosis. I do because i want to know for sure why I am in pain. but I don't want to be told I can't wrestle

Also there isn't much that can be done. So what is the point

[nova apex]

no dw that wasnt a vent, i was just answering your question :)

[nova apex]

aw i can relate. ive recently been liking dancing but. it hurts. and i know it is dangerous for me. but i dont want to be officialy told i cant do it anymore yk?
but yeah tbh im 18 and right now it matters a lot more to me to have a formal diagnosis and get things to help such as compression clothes, braces, mobility aids, pain relief, anything that could help.

[cyan plover]

I don't have EDS (I think) but just curious if there's anyone else who randomly gets pretty bad pain from their pinky (could be related to the fact I also rest my phone/ereader on there)

[opal charm]

We do occasionally but I think it’s because we have a weird joint in it

[violet zenith]

Mmhm! Yea n go numb lots n just hurt and fingers have been locking more, more recently

[dense wren]

Yes. Our joints get random pains that only last a while and then fade. All inexplicable, though we are hypermobile.

Could be either our hypermobility, our tics with urges being suppressed, or our nerves saying they hate the lack of oxygen.

Can barely tell which.

[violet zenith]

[obtuse sparrow]

I'm also autistic so I wear compression wear because it gives me pressure. It helps.

[cyan plover]

oh wait yeah mine goes numb too lol just randomly 😭

[cyan plover]

oh yeah apparently I am hypermobile too (diagnosed by friends /hj)

[dense wren]

Pffft yeah after I found the beighton score I’m like……ummm this explains a lot.

[nova apex]

SOBBING

tell that to my BROKEN dr martens :(

[cyan plover]

they do always do pop when I move them

[dense wren]

Knees and Ankles, yes I do suffer from both these limbs.

[dense wren]

Thissss istg

[cyan plover]

I don't ||they suffer from me >:)||

[dense wren]

I need that as a shirt print 🤣

[cyan plover]

feel free to get it on a shirt lmao

[dense wren]

Aight, when I have money I’m picking up a new hobby 😂

[blissful rune]

Going to the doctor today. Going to request an inflammatory workup to start figuring out if I have EDS or not. I suspect I do or a similar joint-affecting problem. I just don’t have hyper-mobility which made me think I didn’t for a long time so I didn’t bring it up.

Just thought I had several unrelated issues. So silly in hindsight.

[nova apex]

there are a few types of EDs, hypermobile EDs is the most common type, however you do not have to be hypermobile to have EDs. you could have another subtype. /info

also gl with the appointement :)

[blissful rune]

Yeah, that’s what a walk-in doctor said to me last week when she recommended today’s appointment and workup lol. /lh /info

[blissful rune]

Thank you!

[cyan plover]

also the other way around you can be hypermobile without having EDS

I think/hope otherwise I might have to also talk to a doctor LOL

[blissful rune]

Learning all sorts of new stuff! ^_^

[nova apex]

no you can be hypermobile without having EDs.
however if you're able to go to a doctor and talk to them about it, its always a good thing to do

[cyan plover]

meh work

I'll do that maybe another time 😭

[blissful rune]

I’m learning that I should just point everything out to my doctor lol. Save myself years of trouble from now on. /hj

“Doc I think I have a splinter.” /j

[nova apex]

tbh i actually do point everything out
bc i have no idea whats important and whats unimportant to say
so i basically just say everything bc i feel like everything is important
but ive been recently told that i share too much and that there is info im supposed to leave behind?? and i cant comprehend this 🧍

[blissful rune]

While I do the opposite and let things get out of control. There is no pleasing people is there? /hj /lh

[nova apex]

we basically complete eachother. we should do an appointement together someday /j

[blissful rune]

XD I love it

[obtuse sparrow]

I did a bunch of chores. It hurts but I am happy. How do people balance getting stuff and mentally being happy vs. just it hurts.

[blissful rune]

No clue but if you figure it out would you share? /lh /h

[obtuse sparrow]

My elbow hurts

The other one

Not the one that hurt before.

[violet garnet]

i had such a bad stomach ache last night, i havent had a bad one in so long, which possibly means im getting bad ones again😭

[fierce saddle]

Um so my legs are super weak rn and when i stand up i get slightly dizzy and then my lges start to fall and so i tried standing up slower and it didnt help

Ayy ok i can stand up now

[blissful rune]

So doctor verdict: not EDS so I’ll probably dip from this thread. Not fair to you all for me to be here.

Turns out my knees are messed up because there’s something wrong with my patellas. This led to my knees dislocating which causes me to walk funny which in turn led to my damaging my ankles and hips. They think I need knee surgery followed by PT relearning to walk without damaging my other joints.

Wrists are carpal tunnel. Elbow is from work. Still unsure where the fatigue is coming from, but I am an insomniac with burnout.

So it makes sense that it was showing similar to EDS. Doc said I wasn’t wrong to suspect that. Physical just showed differently and I’m getting referred to a specialist to confirm.

Sorry if I’ve upset anyone here. I wasn’t lying or attention seeking. Just felt the need to be honest with everyone. And I probably wouldn’t have gone and gotten this solved without this community so thank you. /gen

[nova apex]

you're good, no harm caused!! /gen im so glad u figured everything out, good luck with the rest of the care (PT, surgery...)!!!!

also u dont have to leave this thread if you want to stay tbh, yes this place is to talk about EDS, but even if you don't have it you're always free to ask questions 💗

[obtuse sparrow]

I am going to try to go to pride and jafax today

It will be a lot. I will be a lot of pain by the end of the day but it's a once a year thing

It's worth it. I think

[nova apex]

no reply from the hEDs hospital 🧍

end of the deadline was today

so im calling tomorrow

i SURE HOPE they havent forgotten or lost my email AGAIN

[nova apex]

calling rn 🫡

theyre on break, i gotta call back in 20mins

[nova quiver]

Ack I hate when that happens 😭

[nova apex]

<- is waiting 🧍

ok im gonna try to call now

so scared

scareded

aaa

oh no wtf

theyve changed it

instead of making 1 longggg call while being on hold

now i have to make 1000000 short calls waiting for them to pick up?????

that. doesnt sound right.

and theyve changed everything its a new phone number a

um 🧍

so 🧍

good news is, i am on the waiting list

bad news is, uh, the waiting list is approx 20 months long

so uh

thats about a 2 years long wait

sooooo yeah 🧍

[nova quiver]

FUCKING WHAT

[nova apex]

I KNOW

SOBBING

(i actually cried)

sm things can happen in the span of almost 2 years???????

its not their fault obv they have very few doctors but. 2 years.

there r 3 big hospitals in france that take care of EDs

• 2 of them have a waiting list of 20 months
• the last one has a waiting list of 3 years and has closed admissions for now

yeah 🧍

ive booked another appt with my rheumatologist in september but. i dont think he can do anything more for me

[fierce saddle]

The last couple of days ive had this new symptom where i basically get really weak legs andthen fall ober, before i get dizzy so i have a bit if time to sit down, i am so suprised that i havent fallen yet this evening, because i do not feel good, anyone have ang tips? Also could this possibly be an EDS thjng, i couldnt find anything online

Also gl wirh the hospital

[pseudo mural]

it could be POTS?

i had a hospital appointed todayyy which created so much anxiety for me just so that they said my pain in my knees and everywhere in my joints 'its just anxiety and growing honey' like bro fucking what ive been having it since i was 9 and my growing pains and shit stopped at like 11ish! and ive had mulitple disloactions and they and sprains and breaks and strains and they dismissed it!

[obtuse sparrow]

In feel really bad. Everything hurts and I am even limping because it just hurts

I don't want to move

[opal charm]

I’m sorry you are going through that. Hope you’ll be ok.

wrestlingunicorn ↩️

[Reply to:](#1146106956621303908 message) In feel really bad. Everything hurts and I am even limping because it just hurts

[obtuse sparrow]

I just need to rest. That's all. But I am at work so I can't. And I will be here till 10pm. Then I have to be up at 7am

[opal charm]

That’s only 9 ish hours or less. Yeesh.

wrestlingunicorn ↩️

[Reply to:](#1146106956621303908 message) I just need to rest. That's all. But I am at work so I can't. And I will be here till 10pm. Then I h…

I generally stay up til 2am and am forced to get up at 6:30am

But those are Wednesday-Sunday. Monday+Tuesday I pass out about 9pm and get up 6:30am

[obtuse sparrow]

I don't feel stable on my feet today

It's scary

I am dizzy and just feel super weak. Walking long distances is very hard.

[opal charm]

Ah, so kinda how I have been feeling as of late. I’m sorry you are going through that, you aren’t alone.

wrestlingunicorn ↩️

[Reply to:](#1146106956621303908 message) I am dizzy and just feel super weak. Walking long distances is very hard.

[obtuse sparrow]

How do people deal with just everything hurting for no reason. Like does ice help?

Or just take pain meds and hope

I feel like I am going to pass out. I need to lay down. But I can't.

[obtuse sparrow]

Ok. A little better

I went to my car and tilted the seat back. And just layed there for 10 mins

[obtuse sparrow]

Do people fall. Like if they push themselves too far do joints give out and you fall?

[nova quiver]

Mine do
Tends to be that the muscles just can't hold it anymore and my joint gives out

[obtuse sparrow]

It's scary

I caught myself on my car before I hit the ground. But I haven't gone upstairs because I could barely stand long enough to make dinner.

[opal charm]

Yeah, we get that, we almost fell when we were hiking once - luckily we were able to get in a van with one of our teacher’s who was checking up on our hiking group before we fully collapsed

wrestlingunicorn ↩️

[Reply to:](#1146106956621303908 message) Do people fall. Like if they push themselves too far do joints give out and you fall?

[tulip coral]

yeah i do lol, my knees point inwards when they're straight

[obtuse sparrow]

Same!

Swimming is awesome

My joints are not yelling at me barely

[nova apex]

aw im the exact opposite LMAO swimming makes everything worse and my ankles gets spastic /nav

[obtuse sparrow]

Huh

Interesting

[opal charm]

My toe dislocated what do I do

[opal charm]

It’s fine now

[obtuse sparrow]

It put itself back?

[opal charm]

Kinda yeah

I don’t know if it actually dislocated but like it sorted itself out after 5 mins or so

[obtuse sparrow]

Sometimes mine click a little out if place but not fully and then fix themselves

[violet zenith]

Mine do that a lot^^ like a lot, a lot. It hurts horribly then it fixes it self after a bit

[violet zenith]

Same

[tulip coral]

i've resorted to using wormwood patches for my hip and back pain

painkillers aren't touching it and i can't get comfortable rahhhhh

[quick trout]

I'm sorry to hear that have you spoken to your GP they might be able to help

[tulip coral]

i have a blood test today so i'll bring it up to them

[quick trout]

Aww good I'm glad you are getting sorted

[stone berry]

Had my PT consultation yesterday, and my first session is this afternoon! I'm excited, especially for one of the goals I'm working towards

[quick trout]

What dose PT stand for?

[nova quiver]

Physical therapy

[quick trout]

Thanks

[tulip coral]

got a phone call today to hopefully up my pain meds yayyyyyy

[obtuse sparrow]

Yay

[quick trout]

I hope it goes ok you will have to let us know how you get on

[tulip coral]

i will i will !!

i'm currently on 15/500mg of cocodamol

[quick trout]

Thank you

[tulip coral]

but it doesn't do anything so i'm hoping for a stronger one

[quick trout]

I hope they give you stronger ones

[tulip coral]

me too

this back and hip pain has woken me up at ridiculous hours for the past 3 days and i haven't had a decent nights sleep

[quick trout]

Heat won't be helping either

[tulip coral]

usually the cold weather makes my pain worse

idk if this is a flare up or the new baseline though

[obtuse sparrow]

Cold does make my pain worse.

[obtuse sparrow]

I really am not doing well

Not today.

I am going to do nothing but watch TV and rest.

[tulip coral]

they prescribed me naproxen and a stomach liner pill too so hopefully this one works !!!

[rare sierra]

GG @tulip coral, you just advanced to level 4!

[tulip coral]

yay

[quick trout]

Yay

[tulip coral]

yippeeeeee

[obtuse sparrow]

I have eaten something, drank water and relaxed today. I am feeling slightly better.

I got nothing done but I do feel a little better.

[quick trout]

Excellent I'm so glad for you that you feel better

[obtuse sparrow]

And I just fell. Wtf

My legs don't want to work today

I was feeling a little better but apparently not enough to walk.

[tulip coral]

my heart hates me

[fierce saddle]

Oh gid

[tulip coral]

im at work as well😃

[obtuse sparrow]

Do you feel ok?

[fierce saddle]

Yea

[obtuse sparrow]

Hmm

[opal charm]

It really does hate you

🐾 axel 🦴 ↩️

[Reply to:](#1146106956621303908 message) my heart hates me 📎

[tulip coral]

it lasted about 45 minutes and my legs were really weak💀

[obtuse sparrow]

I am exhausted. I have been mostly sleeping cause I am just Soo tired. And in pain and honestly right now I don't trust that I won't fall. I am starting to know how it feels when my legs aren't going to hold me.

Which I guess is good.

[obtuse sparrow]

Hmm. I was going upstairs to do laundry and my heart rate was 130

[fierce saddle]

Happy disability pride month

[nova apex]

is this a common hEDS experience
yk the sports class we used to take when we were younger (or some of u might still be taking those)
yk the stretching time

yk how that did not stretch anything at all...... the teacher was like "oh yeah you're gonna feel the stretch here and its normal if it hurts" and i was just here like 🧍 bending farther than everyone else and still not feeling the stretch

ive seen someone say this was relatable and i didnt even know i thought i was the only one but apparently its an HSD/hEDS relatable experience so 🫡

[fierce saddle]

I do martial arts and we do streches for them the leg ones and arm ones basically dont strech, they only really strech if i am super tight(ie if last week doing it we did a whole ton of like sit ups or push ups or smth)
I try to get it too strech by like either pulling my legs ir arms more or just like idk really

But yes

Relatebable

[opal charm]

I experience this. Though it had its moments of being painful.

aster-tje (@ping) ↩️

[Reply to:](#1146106956621303908 message) is this a common hEDS experience
yk the sports class we used to take when we were younger (or some o…

Also question. Can you subluxate a limb a lot that you haven’t had broken before? And it to be only one limb?
Without having EDS?
Even if you are Hypermobile?

Though I do get joint pain in my knees. As well as, my knee’s, elbows and wrists crack a lot without pain.

The knee joint pain only happens occasionally.

[half night]

yes i subluxated my shoulder swimming on thursday and i have never broken my shoulder

also i dont think breaks commonly occur in joints ??

[opal charm]

Good point.
Just unsure if hEDS is something I should look into with my doctor or not because it doesn’t make all that much of an impact on my life.

[half night]

ahh yeah

im not sure if i have hEDS or not but i am hypermobile and i do subluxate my joints a lot

i also have osgood-schlatters in my knees

maybe look into that

[obtuse sparrow]

Should I go to the the ER? I was up for 20 minutes and my heart rate was 150 and I felt like I was going to pass out

I run and bike and swim normally. I am not unfit. So this is weird.

It's been getting steadily worse. It was just getting to 100 and now it's getting really high.

[opal charm]

Look up POTS
It’s very common to have alongside EDS. And that sounds like POTS

wrestlingunicorn ↩️

[Reply to:](#1146106956621303908 message) It's been getting steadily worse. It was just getting to 100 and now it's getting really high.

[obtuse sparrow]

Should I go to the ER? Or no. I layed down partially because I didn't trust myself not to pass out. But it's back down to 90 now

[opal charm]

I’d def see a doctor about it. Maybe not the ER? Idk if ER’s would help you more.

Yeah sounds like POTS to me.

Go to a doctor about it.
Write down your symptoms that you had with the fast heart rate.

[obtuse sparrow]

Mostly I just felt really really weak and like I was going to pass out. So I layed on my bed.

[opal charm]

When you lay down. Elevate your legs and see if that helps lower the heart rate.

Quick thinking that you lay down

[obtuse sparrow]

I was going to fall. I didn't feel good at all.

[obtuse sparrow]

That does. I can't really do much right now without my heart rate skyrocketing. I went downstairs and it went to 130

But if I lay down and put my legs up that actually does help.

[obtuse sparrow]

I am going to call tomorrow morning. I'm scared.

My chest is also really tight. Is that normal?

[opal charm]

Yeah. Def go to ER if you feel you need it.

But idk what they’ll tell you.
I’ve heard of ER’s being shit for episodes of high heart rates.

[obtuse sparrow]

I am laying down mostly.

I am laying with my feet up and it's back to low 80s

[opal charm]

Told you so.
Laying that way pumps the blood flow back to your heart and head from your legs.

[obtuse sparrow]

Hmm. Interesting

I had to get back up because I was at work and I just needed to feel better. My chest felt tight and I am just not comfortable

I will call tomorrow. They might want me to come in for an emergency appointment

[obtuse sparrow]

I convinced my boss to let me go home early

I still feel really bad

[obtuse sparrow]

I think I dislocated my elbow again by moving my couch

Wtf

[fierce saddle]

Nooo

[quick trout]

No way

[obtuse sparrow]

Ok. Not fully

I managed to get it back into place

I keep a brace just in my closet for when this happens.

Yay. Fun../s

[obtuse sparrow]

Everything hurts

I need to do stuff but it hurts so I will probably not

[obtuse sparrow]

Ok. So I am going to the doctor on the 10th to get an official diagnosis. I want to write everything down. So I can just hand them papers.

[nova apex]

i did that for my first rheumatologist appt too, he said it was very very helpful

[pseudo mural]

omgggg guys i just started a trail of Medical Cana and it has helped me sooo muchhhh like it has helped me soo much with with walking and stuff

[nova apex]

whats medical cana?

[pseudo mural]

its short for medical cannabis (idk how to explain it lol)

[nova apex]

ohh oks

[hard basin]

here (maybe) (being tested)

[obtuse sparrow]

So question. I was told by a friend that you should try to do as much as possible. Because it hurts more to be in a wheelchair

It hurts Soo bad right now to walk. And I really shouldn't. I am dizzy also. But I need to

[obtuse sparrow]

What helps peoples pain

Does ice help or what?

[novel wyvern]

I use pain meds and ice packs mainly

I also find something to distract my mind, which sometimes makes it more tolerable

[obtuse sparrow]

I am trying that right now. It's kinda working. I can't get comfortable. It hurts if I move but it's hurts to get stiff too

[novel wyvern]

Yeah I get that

I colour and cross stitch on my phone which helps, I also do some gaming

[obtuse sparrow]

I like to watch horror movies and play steam games

Coloring makes my elbow hurt

I like to but it hurts sometimes

[novel wyvern]

Yeah that’s why I do it electronically so it hurts less

I used to actually colour but then I switched to apps and I can do it a lot more now and I can do it anywhere

[novel wyvern]

What stream games do you like

[obtuse sparrow]

horror games and board games

[novel wyvern]

Nice

[obtuse sparrow]

i got a new one today

cakeys twisted bakery.

[novel wyvern]

That sounds good

[obtuse sparrow]

Ok. I am doing a teensy bit better

In less pain

I took some pain meds. And am playing a video game.

[novel wyvern]

Good glad your pain has gone down a bit

[obtuse sparrow]

I want to do stuff intellectually. Like I had to ask for my roommate to get the pain meds. Etc. but I know of I tried to walk I would be in way more pain again

[novel wyvern]

Yeah

I have to ask people for help all the time and I wish I didn’t have to

[obtuse sparrow]

And I barely can. I need help. I need to lean against walls or something.

I am very unstable

[novel wyvern]

I usually have to do that but I had surgery just over 6 weeks ago and I can’t get off my bed unsupervised or without help

And I have to use a frame and wheelchair all the time

[obtuse sparrow]

I am normally able to. There are days I will fall and I should get crutches. But I am kinda ashamed. And my doctor wants me to get a wheelchair. She doesn't think it's safe for me to have to catch myself. But I don't want one

[novel wyvern]

Wheelchair are good if you are prone to falls and when you can’t walk properly. It takes a lot of getting used to though

Crutches aren’t always good for people with EDS especially if you have a lot of upper limb pain and discomfort

[obtuse sparrow]

I have a problem with my left wrist and right elbow

[novel wyvern]

Yeah so if you really wanted to get crutches I would be careful about the type

[obtuse sparrow]

I was thinking the type that puts the weight on my forearms

[novel wyvern]

Yeah I heard they can be good

I have it in frame form

[obtuse sparrow]

I found unicorn ones

They are not cheap

Tho

[novel wyvern]

Oo nice

[rare sierra]

GG @novel wyvern, you just advanced to level 8!

[novel wyvern]

Yeah equipment isn’t cheap , I get lucky a lot because medical places keep helping me to get mine

[obtuse sparrow]

Those

You can adjust the handles

[novel wyvern]

They look really nice

Feel free to send me a friend request if you want

[obtuse sparrow]

I am going to get knee braces tomorrow. I am hoping that will help my Walking. I got braces for my elbow and wrist and it helps a ton.

I am hoping it will hurt less.

[opal charm]

Is KT tape a good idea to support hypermobile knees on days where they’re not really good enough for no support but not bad enough for the proper supports?

[obtuse sparrow]

The braces did help with the pain. And but I still feel unstable. I need a cane also and my knees still start to buckle.

[obtuse sparrow]

But it works.

[obtuse sparrow]

I am a 5 on the Brighton scale. I was curious

[quick trout]

That checklist is helpful thanks for sharing

[obtuse sparrow]

Yep

My knees hurt too much to sleep

[obtuse sparrow]

So I think I know what my problem. It's not quite eds. But very similar disorder

[nova apex]

marfans? /gq /nfta

[obtuse sparrow]

Hsd

I am going to confirm tomorrow

[obtuse sparrow]

This

Similar

I am going to create a chat for hyper mobile disorders. Because there are actually a lot

Oops.

Where can I link?

It's in pics and videos

Ok. Created

[fading sundial]

Hi has someone experience with bracing knees ? I have much pain in my left knee and a bit in the right.

[rare sierra]

GG @fading sundial, you just advanced to level 1!

[violet zenith]

I wear knee braces! They dont help too much with pain for me but they help with general joint stability and keep me from hyper extending my knees as much. Overtime that does reduce pain but it’s not an instant fix more of a support

I also don’t didn’t pick my braces tho, they were given to me by a friend and one is more of a compression brace.

[rare sierra]

GG @violet zenith, you just advanced to level 1!

[fading sundial]

Thanks ^^

[fierce saddle]

So recently sometimes when i stand an walk around i get really out of breath and my heart feels like its fast, im assuming yhis isnt normal? Also idk is it ok i put this in here

[lucid sundial]

probably better suited for the pots channel/gen

[fierce saddle]

Ok

[fierce saddle]

I got the wire for finger splintss im so happy