Ehlers Danlos Syndrome (EDS)

[nova quiver]

Woo good for you/g

[fervent jay]

I very likely have hEDS, everywhere is flexible on that 9 point scale except my knees and hips and yet those are the one that hurt the most 😭

[rare sierra]

GG @fervent jay, you just advanced to level 2!

[dense wren]

Anyone else have entire days where a limb feels weak so you are nervous bout doing anything with it?

I’ve had that with my arm or my legs and ankles where like a day or two I’ll feel it become really weak.

Then be fine afterwards.

Even when I rest.

[lucid sundial]

do you have any of the other symptoms? there’s a whole checklist/gen

[fervent jay]

Yes, my skin is extra flexible, but I generally don't know what qualifies as velvety/soft skin vs normal skin. My joints click sometimes, I am fatigued almost all the time, and when I stand up sometimes I get awful lightheadedness and tunnel vision.

There are some others I forgot to mention surely, but yeah I do have a majority of the symptoms

[lucid sundial]

here’s the actual symptom checklist for anyone who’s interested

won’t let me link so 🫠 bad quality pic sorry

[lucid sundial]

light headedness isnt really a symptom of eds, and if your symptoms don’t match the list you probably qualify more for hsd. /gen

[cyan plover]

OH SHIT YEAH FORGOT TO GIVE U THAT ROLE 😭

it's fixed now haha

[lucid sundial]

thanks lmao

https://www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf

[cyan plover]

lemme ban u for sending links now /j

[fervent jay]

I've seen the checklist, I'm pretty sure I don't have a family history of it so I'm confused like what if it's a chicken or the egg kind of paradox who got it first??

Anyways, it could definitely be HSD, or just "not exercising enough" bullshit I keep getting.

[cyan plover]

I think I would have heds with this list 😂

[nova apex]

:0

[fierce saddle]

Half of these idk what mean 😭

[fierce saddle]

Welp i keep getting the its just from doing martial arts alot … ignoring the fact that this was happening before then i just thogjt it was normal💀

[rare sierra]

GG @fierce saddle, you just advanced to level 16!

[nova apex]

can u list the ones u dont understand so we can help? /pos /nf

[fierce saddle]

Its most of them😩

Hang on

Yea ok nvm my plan didnt work

I search stuff up later, thansk though

[west scroll]

soo new thing is happening and I wanna try to understand what each thing is and why but my ankles and knees are both hurting in a new way

they’re not inflammed but it feels like they’re being constantly stretched but more painful than a stretch idk why but I went to laydown to go to bed snd then this started happening so now I’ve been up for like an hour trying to see what’s going on but they haven’t stopped hurting

I took some advil for the pain but still this type of pain hasn’t happened before which is concerning in a way

[lucid sundial]

maybe try taking tylenol and wearing a brace if you have one

[west scroll]

I’ll have to tape them cause I only have one knee brace and my ankle braces are stinky

[halcyon elbow]

hey do any trans people with heds have any recommendations for binders or binding methods? I really struggle with binding especially for longer periods due to extreme pain, but my chest dysphoria is awful and I'd like to be able to find something that works. I need something that goes to like 3-4XL at least

[nova apex]

ive never tried binding due to sensory issues and unsafe house

have u heard of trans tape?

[west scroll]

if you have rib problems use trans tape but if you don’t I suggest you get the tanktop binder instead of the cropped one to make sure the pressure isn’t completely on your ribs

also remember to take brakes from it and don’t exercise in it

[tulip coral]

anyone else with EDS prone to spraining their hips? i've sprained my right hip twice according to the doctors but it feels out of place even though the x-ray showed it wasn't

im very confused

[marsh sparrow]

I may have it

[west scroll]

I think I have pulled mine a few times or have strained it when I used to play soccer but I don't think I ever sprained it

[tulip coral]

see i don't think it's a sprain but the A&E doctors was like "i think it's a sprain"...

you THINK???

dude didn't even know for sure

[violet zenith]

😭 Got out of bed, shoulder immediately hurt and couldn't move it then slowly able to move it still hurts a bit. Should I be worried?

[jovial remnant]

i have chronic hip pain i believe due to this? its really confusing but i go to an osteopath that really helps

unless its dislocated drs just say its normal its the worst

[tulip coral]

yeah i have to take small steps cuz if my legs go behind me too much it really hurts my hips

[rare sierra]

GG @tulip coral, you just advanced to level 6!

[dense wren]

Does anyone have a thing where their joints feel weak and like they barely can move and if so it’s quite wobbly?

Idk if it’s a HSD thing or if it’s another thing.

Cause it’s not a numb feeling. Just unstable joints really.
No other way to describe it

[tulip coral]

yes all the time tbh

[vestal prawn]

Yeah I feel that too sometimes

[rare sierra]

GG @vestal prawn, you just advanced to level 8!

[violet zenith]

I think this is what happened when I was like 7 or 8, 2 times from what I can remember actually. I like stood up and my legs just couldn't hold me up

[dense wren]

Huh.

[violet zenith]

When I was younger I think that's what happened.

[opal charm]

OMG fellow EDSers hello! We’re diagnosed hEDS but waiting for genetic testing to confirm cEDS cos adolescent rheumatology apparently doesn’t do genetics 🙄

[west scroll]

welcome to the chat!

[opal charm]

thanks!

[latent valley]

Hello! I have been diagnosed with hEDS very recently and have been trying to figure out how my weird body works.

[latent valley]

Yes quite frequently. I get that feeling most mornings and sometimes it wears off throughout the day and sometimes it just stays all day like today. I get really unstable and wobbly and feel really weak. I especially get it in my hands and it will be hard to do things like open a bottle or grip something small.

[dense wren]

That’s pretty much similar to what we go through. It’s a pain.

[wary ether]

anyone have any recommendations for finger splints/supports? /genq

[wary ether]

yessssss very much so!

[latent valley]

I also definitely need some of these but haven’t tried them yet. I do have this thumb/wrist brace I got off Amazon that has really good support and keeps my thumbs in place, but haven’t tried anything yet for the other fingers.

[opal charm]

Imma need sum like that for my wrist 😭

Anytime I lean on my wrist like rest my head on it

It gets loose and then I can easily put my thumb to my wrist

I was told that isn't good for my wrist but it get loose and I do that a lot

[dusk jungle]

there are a bunch of different kinds on amazon and there are even ones with fun colors if youd like!

[opal charm]

Ooo yess!!!

[dusk jungle]

there are pink ones that are super cute

[opal charm]

Ooo ty! Ill save this for another time

[chrome birch]

i just tried to do a little dance, and now my elbow hurts so bad :<

[rare sierra]

GG @violet zenith, you just advanced to level 10!

[opal charm]

Stupid fragile skin. Gotta limp for couple days now. How fun /sarc

[stark trellis]

Hiiii I’ve never used these forum things on discord before so be patient with me lol but I have hEDS and just wanted to stop in to say hello! Hope you all are having good or at least okay days :)

[stark trellis]

This is the style I use, they’re cheap and plastic but fairly durable, just look up oval 8 splints or ring splints and you should be able to find them on Amazon and stuff like that :) if you want to get metal ones I hear they’re better for long term use too but I like these because they often come in packs with different sizes so you can find out which size you need for more permanent ones. Also just a disclaimer please don’t take this as medical advice and talk to your doctor if you have chronic pain in your hands as EDS can cause pain for other reasons than simple hypermobility (e.g. arthritis)!

[wary ether]

thank uuuu

[wary ether]

Thank you so much!

[stark trellis]

You’re welcome! Hope they help you!!

[rare sierra]

GG @stark trellis, you just advanced to level 2!

[viscid stream]

Hey.
I tried those a while ago and was really disappointed by the sizing 😅
I have short fingers and usually nothing really fits my hands or wrists.
I want to get finger splints bc i really need them for overextending. How do I know which sizes to get?

[stark trellis]

Oop I’m not sure if the link sent I just got a message saying it’s not allowed, look up the Ehlers Danlos Society Ring Splints if it’s not popping up

[placid elbow]

I dont know if i have EDS its possible cause i can basicly just dislocate my shoulders with no pain...

[opal charm]

people can have high pain tolerances we can walk on bilateral dislocated hips with only minor discomfort

Madyson ↩️

[Reply to:](#1146106956621303908 message) I dont know if i have EDS its possible cause i can basicly just dislocate my shoulders with no pain.…

[placid elbow]

true, while i understand that, there are other things that i dont feel like putting, yk personal items but anyway i ment like dislocate on command sorrta thing

[opal charm]

that’s a “party trick” I’ve heard off

[spare cradle]

ah the joys of having to crack my wrist into place multiple times a day

[opal charm]

My wrists just hate me atp. They loose af

[wary ether]

another thing you can look up is Finger orthoses, i just found them when doing research for a design project (i think it’s the same thing as the ring splint thing but idk, might just be the more “medical” term)

[dense wren]

I’m worried about my weak shoulder if I get forearm crutches

[azure juniper]

Hello! What type of specialists did y'all get referred to for EDS? It's looking like a possibility for me and we're trying to figure out exactly where to go for this. My Primary Dr referred me to rheumatology but they denied my referral bc they don't "deal with that type of thing anymore." So my mom and I thought it'd be a good idea to reach out in this forum. Hope you all are having a nice day and doing as well as you can be! 🫶

[opal charm]

that rheumatology dept is chatting shit they’re the ones who diagnose but u need genetics to confirm what type

Lex_Tyler ↩️

[Reply to:](#1146106956621303908 message) Hello! What type of specialists did y'all get referred to for EDS? It's looking like a possibility f…

we got diagnosed through rheumatology but they didn’t do genetics and we don’t fit the criteria for hEDS which is what we’re diagnosed with so now we’re waiting for genetics to confirm what we suspect to be classical EDS

[azure juniper]

okay tysm! I'll look for a different rheumatoid dept and ask my dr about genetics tests n stuff. Good luck with the classic EDS diagnosis journey and genetics! 🤟

[azure juniper]

and yeah they "used to handle EDS but don't anymore" 🫠

[opal charm]

thanks!

Lex_Tyler ↩️

[Reply to:](#1146106956621303908 message) okay tysm! I'll look for a different rheumatoid dept and ask my dr about genetics tests n stuff. Goo…

[stark trellis]

I actually stumbled across a Center of Excellence in Ehlers-Danlos Syndrome when trying to get an autism diagnosis, I doubt you’ll happen to be in Washington state but if you are it’s called Yellow Brick Clinic and they have psychiatrists that can diagnose autism, ADHD, and EDS via Zoom/Telehealth visits. You can also look on the Ehlers Danlos Society website, try looking up “Ehlers Danlos Society centers of excellence” and it should pop up then once you’re on the website find the “Current Centers and Networks of Excellence” and click “Find out more”. The selection can be fairly limited though depending on where you live so if there’s no one in your area you can try to get referred to a geneticist. Just a warning though, I almost went down that route but they said it would take 3+ years to get in with a geneticist, although I am on Medicaid insurance which makes wait times a living hell lol. Primary care does also have the ability to diagnose EDS but in my experience they really don’t know anything about it (I’m exaggerating a little but not that much).

[azure juniper]

Wow thank you so much! I'll definitely be checking that website out, I live on the opposite side of the country as you but hopefully they'll be something close! It'd be amazing for AuDHD too lol. And yeah I get the Primary care not knowing a ton part, my PCP said "it could be hEDS, but even if it is something like that there isn't anything you can do about it so I wouldn't worry" like dood. u fr rn? 🙂
again ty so much! 🫶💖

[stark trellis]

You’re welcome! I hope you find answers and that doctors start taking you more seriously!

[marsh sparrow]

I may have EDS but I have found ways to get through school with pots and possibly EDS we haven’t brought it up cause I am going to GI soon and I am so tired of being gaslight so I have not brought it up in my appointments yet

[dense wren]

Would medical tape work to hold a weak hypermobile shoulder in place?

[fierce saddle]

Im a bit annoyed, the past couple of times ive walked a ‘far’ (not actually that far but idk) distance my left ankle has start to lock up and turn in

[opal charm]

it’ll help but be warned it might irritate ur skin and it’s more expensive than just buying a brace -someone who spent loads on KT tape for ankles and knees before just getting braces for both

✨Unhinged Undead ✨ ↩️

[Reply to:](#1146106956621303908 message) Would medical tape work to hold a weak hypermobile shoulder in place?

[nova apex]

yeah but also,, shoulder braces. dont look comfortable at all. and look very. complicated?

like. hips and shoulders look like the hardest joints to brace. if that makes sense

[opal charm]

hips are hard af tbh we have a hip brace but it doesn’t really do much for us tbh

aster-tje (@ping) ↩️

[Reply to:](#1146106956621303908 message) like. hips and shoulders look like the hardest joints to brace. if that makes sense

[weary marsh]

I may have it as well. Not hyper mobile the way that the test shows, but having severe issues with knee caps, arms, fingers ect.

[rare sierra]

GG @weary marsh, you just advanced to level 1!

[opal charm]

u have to be hypermobile to have majority of the EDS types

[opal charm]

11 of the 13 types have joint hyper mobility as either a major or minor criteria of diagnosis

Matthew ↩️

[Reply to:](#1146106956621303908 message) I may have it as well. Not hyper mobile the way that the test shows, but having severe issues with k…

[weary marsh]

Jup, I’m aware.

[dense wren]

Huh, alrighty good to know! 🙂

I any brace type or brand suggestions?

[opal charm]

u can be hypermobile without EDS

[cyan plover]

the beighton score is one part of the diagnostic criteria for hEDS so being hypermobile doesn't mean you have any kind of EDS but not being hypermobile also doesn't mean you can't have EDS

[nova apex]

!!

rheumatologist appt on thursday woooo

bc the wait list of the specialized hospital is. 2. years. long. /neg

suddenly waiting 6 months for a first appt and 4 months for a followup with my rheum doesnt seem that long anymore /hj

[marsh sparrow]

I use this for my knees and other parts of my body to it does irritate where I place it but it does help me get through the day without my ex.(knees) like popping out and it does help me but something might help you I just started using this and so far it is helping

[dense wren]

Woah those are colourful as heck. Ok thank you. I’ll see if I can get them and try them.

[marsh sparrow]

They have neutral ones to if you don’t want colorful ones I like both

[nova apex]

rheum appt tomorrow

yayay (been waiting 4 months)

i have to ask him if he can prescrire braces, compression, stuff like that

my GP refused to bc she said she didnt know much about EDS so she said no bc she judged braces to be too annoying (which they def can be but also. i prefer wearing braces than be injured) and since she doesnt know anything about EDS she said she didnt want to prescribe me anything relating to it

so i booked another rheum appt instead lol 😭

[noble coral]

Just so u know it’s EDS. EDs is “eating disorders”

[nova apex]

thank you!! i never know where to put the caps sob

[noble coral]

The type so “hypermobile” would be lower case and E stands to Ehlers which is someone’s name same with D but it stand for Danlos and Syndrome is always capitalised (if u forget take a look at the name of this chat is has the full name and abbreviation

So as an example hypermobile Ehlers-Danlos Syndrome abbreviated would be hEDS

[nova apex]

yeah yeah i know what the E and D mean, i just didnt know Syndrome was always capitalized! tysm!!

[cyan plover]

yeah it's an acronym

[nova apex]

i know /g

i just didnt know abt the capitals 😭 /lh

[cyan plover]

yeah acronyms are always capitals

[nova apex]

ohhhh

didnt know that :0

ty!!

[spare cradle]

alrighty as of yesterday I've had 4 doctors all say that my symptoms scream EDS, now to face the final boss in November, the rhuematologist

[chrome birch]

we’re in the middle of a really bad flare up. does anyone have any tips on how to help it? (our ankle is currently the worst right now)

[nova apex]

appt went well :D
i got stronger pain meds in liquid form (i cant swallow pills), pain-relieving gel, and custom fit wrist braces (i still have to go make them) to help w typing/writing (im a student) /pos

honestly i HOPE the pain meds work bc PLEASE

[marsh sparrow]

Currently sick and my body is currently on the verge of death

[violet zenith]

Same tho-

Flu will knock me right out to the point of blacking out a bit

[fast locust]

Guess who just dislocated his shin doing a backbend 😍

[fierce saddle]

Oh god

Gl

[opal charm]

Yeesh. You gonna be ok?

[fast locust]

Yeah, just hurts a bunch

Should maybe hopefully be fine soon/tomorrow

[errant mortar]

Sliding myself into this thread because my partner has EDS

[marsh sparrow]

Anyone else pop there shoulder back in and don’t realize it was kinda out of place

[nova quiver]

I do that with ribs occasionally

[nova apex]

my shoulders r. a mess-

so yes

[marsh sparrow]

I have to pop them back in every morning it’s so annoying

[spare cradle]

shoulder injuryyyyyyy

[marsh sparrow]

I was on the phone with my friend and you could clear as day see it was out of place and she looked at me like I should have been screaming

[stark trellis]

Anyone else get this weird pattern of hand pain? I have hEDS and when I make a grasping motion, like the other day I was struggling to pull a toilet paper roll out of its plastic packaging, I’ll get this huge wave of pain that comes about 2 seconds later and last for 10-60 seconds. It’s like there’s a delay between the action that’s hard on my joints and the onset of pain?

[stark trellis]

Also does anyone else ever stim a little too hard and accidentally injure themselves? 😭 Every time I listen to music I have like a 40% chance of pulling something, bumping into something and leaving a bruise, popping a joint in a painful way etc. and it’s so frustrating bc I’m autistic and I love moving to music to stim ughhhh

[rare sierra]

GG @stark trellis, you just advanced to level 5!

[opal charm]

How do you stop hyperextending your legs when you stand?
I can’t figure out how to. It’s been causing me pain to do it for long periods and may be why my heels hurt most of the time.

[opal charm]

Nvm apparently exercising quadriceps and also using knee braces can help.

[nova apex]

knee braces probably help? idk tho

i always hyperextend my knees i just dont notice it bc thats how ive always been

[nova apex]

like with a stop when your leg is straight so u cant bend further

[opal charm]

Same here but it’s been affecting me standing for long periods. I generally couldn’t feel much of the pain during school because I was forced through it or was able to find somewhere to sit easily.

aster-tje (@ping) ↩️

[Reply to:](#1146106956621303908 message) i always hyperextend my knees i just dont notice it bc thats how ive always been

Yeah, that’s what I was thinking I just don’t know what would be the best bet for me.

aster-tje (@ping) ↩️

[Reply to:](#1146106956621303908 message) like with a stop when your leg is straight so u cant bend further

[pseudo mural]

my thumb dislocated today at college

[marsh sparrow]

I hate when that happens

[fleet sigil]

So my wife and I were having an interesting discussion about flexibility and how it may affect someone who doesn't really stretch or exercise frequently

She suspects that I may have EDS because I have some minor stretch marks on my back and my thighs, and we recently discovered I have some on my calves as well. She also thinks that since I really don't stretch or anything but I still have a level of flexibility that people typically have who frequently stretch, that it lends to the suggestion that I may have EDS.

I do have hyper flexibility in my hands and most of the time when I'm stretching I have to stretch pretty far to actually feel anything.

For those with eds, does this make sense or am I missing something?

[lucid sundial]

there’s an entire list of the diagnostic criteria

[stark trellis]

What you’re saying makes sense but hEDS (assuming you mean the hypermobile type) is so much more than stretch marks and hypermobility. There’s also a big difference between hypermobility and flexibility, hypermobility typically refers to an excessive range of motion in the joints whereas flexibility is a more general term that can include that but also just being able to stretch muscles and ligaments. For example I have hEDS and I’m hypermobile but in many ways I’m not flexible, my muscles are almost constantly tight unless I really do the work every day to make them not do that and I’ll often pull a muscle because my joints want to hyperextend when my muscles can’t. There’s also a lot of symptoms to account for, pain being a big one.

[lucid sundial]

it’s not just hypermobility and stretch marks so i’d take a look at that and see if it matches up with your experience and go from there

https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf

👆🏻 link for dx criteria

[stark trellis]

That being said you may qualify for HSD (Hypermobility Spectrum Disorder), have another connective tissue disorder, or just have non-pathological double jointedness and stretch marks which are both very common in the general population, it just depends on your other symptoms :) also sorry Ky if I interrupted your message 😅

[fleet sigil]

Thanks for the resources @stark trellis and @lucid sundial . It's a relatively recent thread of research for me so I'll have to see where it goes.

[stark trellis]

No problem! 🙂

[gritty patrol]

Just tried KT tape for the first time and omg why didn't I try this sooner 😅

[stark trellis]

Nice! I haven’t had a need for it lately but I had it for a leg problem a while back and it was helpful!

[rare sierra]

GG @stark trellis, you just advanced to level 6!

[opal charm]

i'm so happy that works for u!

[nova quiver]

Ribs keep threatening to slip out 😭

Helppp

[nova apex]

eeeek

[opal charm]

tfw u just slightly push down on ur leg and ur hip pops back in

[vestal prawn]

Does anyone have tips for joint pain? Specifically hips but I’m open to any

[noble coral]

Ja: heat pads for pain
ice packs for swelling
braces/sleeves/tape to support the joint
mobility aids to reduce strain (crutches are the best for us but a cane can work for some people especially if one side is better than the other but be warned of the unsupported leg compensating and then deteriorating)
NSAIDs like ibuprofen or naproxen (in the uk naproxen requires a prescription and you'll have to take a stomach lining medication like omeprazole or lanzoprazole) can top these up with paracetamol but do NOT take an NSAID with another NSAID it's bad
doing physio exercises (if u have any if not gentle stretching exercises can help a lot or low impact sports like swimming)
same can apply to any joint bar the mobility aids cos there aren't really for upper body stuff

[opal charm]

this was me for the record cos pk decided to be stupid

chaos & co 🔥 ↩️

[Reply to:](#1146106956621303908 message) Ja: heat pads for pain
ice packs for swelling
braces/sleeves/tape to support the joint
mobility aids…

[opal charm]

Some really good info, which I am totally not taking note of 😅🥲😂 hahaha

chaos & co 🔥 ↩️

[Reply to:](#1146106956621303908 message) Ja: heat pads for pain
ice packs for swelling
braces/sleeves/tape to support the joint
mobility aids…

[opal charm]

feel free to use it

[weary marsh]

I’m not diagnosed with EDS but would like to learn more about this condition. Is it okay to ask questions here or is it intrusive?

[cyan plover]

yess as long as you stay respectful and want to learn you're always free to ask questions (but also accept no as an answer because nobody has to answer)

[nova quiver]

Depends entirely on the question! Some questions are intrusive and some are completely fine to ask. Also depends on personal boundaries of the individual responding

[opal charm]

are we allowed to talk about prescription meds here

ofc!

Matthew ↩️

[Reply to:](#1146106956621303908 message) I’m not diagnosed with EDS but would like to learn more about this condition. Is it okay to ask ques…

[weary marsh]

Perhaps you shouldn’t mention the name of the medication as it varies so much from person to person how it affects them?

Does it makes sense?

[opal charm]

fair enough i'll wait for a mod to respond before i say anything

[cyan plover]

yeah I dont see why not as long as you follow the rules while doing so and don't "recommend" them to people because people should only use meds they're been prescribed not just random meds or change dosage because someone on the internet suggested it that's all

[opal charm]

ok cool just wanted to double check

censoring cos med names and dosages

we got prescribed ||naproxen at 250mg twice daily|| as needed when our hip first became an issue and we're still on it but since we had an accident our neck has been the main source of pain so it recently got increased to ||500mg twice daily so it's been doubled|| we've been on this for 3 days and it's not even touched the pain we have from going to the gym. i'm curious if anyone else is on pain meds and if it's actually helped not looking for recommendations or anything like that just experiences

[dusk jungle]

I was on naproxen for a while and I think it's really just whichever one works best for you so it's a bit of trial and error till you find one that works

[nova quiver]

If you're dealing with an injury and anti inflammatory would likely work so if naproxen isn't helping maybe try looking at something else? They can also generally help with some pains from EDS.

I'm on a combination of things for various issues so I sadly can't give many suggestions but if you can I'd ask a professional who knows EDS more closely

[jovial remnant]

i would like to have a nap without dislocating my shoulder please
(sending to the eds gods/people in charge)

[violet zenith]

Getting wrist brace bc hypermobility in wrist be getting out of hand. If I lean on it too long my thumb touches my wrist way more easily and it hurts a lot sometimes bc it's so loose so getting a wrist brace

[fierce saddle]

My wrist is so painful these last couple days, and normally i dont have that much wrist pain and its really annoying because the only wrist brace we have is a splint ad while it does help it gets in the way and stuff so i dont want to wear it

[marsh sparrow]

I feel this

[neat bear]

I think I may have eds but I’m not sure and no doctor will probably take me seriously will the rest of my conditions

[turbid shale]

This is so real 😭 both of my shoulders subluxated in my sleep

[dense wren]

Know that pain, not fun at all

[weary marsh]

Left the doctor feeling sad.

Where I live they have no idea what EDS are. So far I've had to educate two persons. Feeling like there isn't much hope I will recive a diagnosis.

I wonder if someone would be willing to talk about how EDS may affect the organs?

Or could link somewhere that I could read more about this?

[dense wren]

Cleveland Clinic has a lot of good resources for any sort of issue, maybe they might help with that. I am unsure.

[turbid shale]

Does anyone know how to relocate ankle and tendon subluxations

[opal charm]

we aren't medical professionals in this chat and we shouldn't really be giving advice on how to relocate joints u should, if u can, go to a medical professional cos we can give advice but it can make the injury significantly worse

i'm down to talk about this

Matthew ↩️

[Reply to:](#1146106956621303908 message) I wonder if someone would be willing to talk about how EDS may affect the organs?

[remote tree]

I’m honestly kind of scared for my right knee coz any time I sit on a ground or go squat it just creaks (?) and it’s gotten worse lately. I usually put more pressure on it but my left one is not nearly as bad. Does anyone possibly have recommendations of sports or activities that could help with that?

[violet zenith]

Warning! Do not take this advice solidly, if at all!

EDS is what I believe to be a collagen deficiency, which makes bones, skin, muscle mass, and tissue weaker. This means it should impact organ wall strength. Basically: be careful, dont get into any bad fights, and your organs should be fine.
Though, it is a range, and cardiovascular EDS of course has an intense effect on the circulatory system

This is what I believe based on research, do your own, because it's out there!

[fierce saddle]

I have creeky knees they suck, sorry no advice tho

Streching regularly?

[weary marsh]

My knees does this in periods. Does it hurts when it creaks?

[remote tree]

could try that tbh

[remote tree]

yeah it does, not too much, but enough for me to go “ouch” every time

[fierce saddle]

Ah

[weary marsh]

I see

Have you tried bringing this up with a doctor?

[fierce saddle]

I do martial arts 3 times a week and generally the streching we do for warm up helps

[violet zenith]

People with EDS, what are your symptoms, and some lesser known ones for your type? I'm beginning to suspect I might have it (my mom does) and I check all of the average symptoms of hEDS I've found. I also just wanna learn more!

[violet zenith]

How do they affect your life? Etc, etc.

[weary marsh]

I also suspect I've got EDS

[stuck zephyr]

we’re unsure what type we have we suspect it’s classical but we have a diagnosis of Hypermobile

ig the way we figured out it wasn’t hEDS was cos our skin is super stretchy and very fragile

[violet zenith]

huh

[weary marsh]

Huh? I thought that was like one of the main symptoms of hEDS?

[weary marsh]

I don’t know if I qualify to answer this.

It affects all parts of me I would say. Chronic pain I would say is the worst. It’s hard to walk and use my arms most days.

I can’t crochet anymore, or just time amounts at a time since my fingers does I don’t know what. ||Bend inside out?||

I wake up due to different parts being of placed. Mostly arms, in periods legs as well. Oh and I hurt my feet all the time. I don’t know the word in English but I do some kind of miss placement of the foot which causes a lot of pain.

I’ve also gone trough ||surgery|| twice due to lose bone parts in my knee cap that the doctors say are due to hyper mobility.

As I’m not diagnosed yet, I’m not qualified for mobility aids of any kind. I have bought a pair of crutches which have been a lifesaver the past months of flare up.

I feel like the symptoms varies a lot during a day. In the morning I can walk just fine. Goes outside and it’s a bit to chilly and my legs just sort of collapse. Then it’s crutches all day 🥲

[rare sierra]

GG @weary marsh, you just advanced to level 7!

[stuck zephyr]

nope fragile skin defo isn’t and mild skin hyper extensibility is one of the minor criteria

Matthew ↩️

[Reply to:](#1146106956621303908 message) Huh? I thought that was like one of the main symptoms of hEDS?

[weary marsh]

Oh okay thanks for telling me!

[stuck zephyr]

no problem!

[violet zenith]

I do have all of the symtoms, but my joints dont necessarily pop out, they just crack a LOT and I tend to overwork myself incredibly easily. I wake up in so much pain...

[noble coral]

U don’t have to have dislocations

[violet zenith]

oh!

huh

then i pretty much check all the boxes for hEDS

[stuck zephyr]

its only about hypermobility I believe it says “hyper mobility with or without dislocation” as one of the criterion

[violet zenith]

Oh My!

Well then

[fierce saddle]

I was considering hEDS for a while but then i got told by my friend whose mum runs a clinic that specialoses in stuff like eds that if you dont have a relation with it your not gonna get diagnosed with it so i just kinda stopped looking, i also have a bunch if other stuff that doesnt match up with hEDS so it could very well ve somethjng else, jm still in this forum tho because alot of my experiances match and i can get tips

Yes i just looked st the criteria sheet again and i meet quite alot of it, thi there is alot i do mot understand what it means😅

[stuck zephyr]

are we allowed to send pictures of stretchy skin?

[turbid shale]

I have hEDS and three of the lesser known comorbidities I have are Spondylolisthesis, Lumbar Segmental Instability and Peripheral Neuropathy.

[violet zenith]

woaH

[violet zenith]

Yeah my mom has it.

[turbid shale]

Those are just fancy words for my lumbar spinal vertebrae is subluxated and causes instability, chronic back/spinal pain and painful muscle spasms.

[violet zenith]

Oh dear

That doesn't sound very fun

[turbid shale]

It's not, I can barely sit or stand without pain 😭

[violet zenith]

your back is mean

[weary marsh]

Could you trigger warn the pictures then?

[stuck zephyr]

alright

TW skin stretching

[noble coral]

TW bruising this is from the skin stretching even tho we have only very short nails

Tw more skin stretching and bruising u can also see veins in the second picture

[violet zenith]

oh I can do that

-# huh

[noble coral]

U can have stretchy skin with hEDS it’s more the fragility that isn’t hEDS

[violet zenith]

Riiight

Yeah I have smooth and kinda velvety, stretchy skin, but it isn't fragile

[stuck zephyr]

yeah that’s the main difference between hEDS and cEDS skin

[lucid sundial]

cEDS patients have extremely fragile skin that results in atrophic scaring. that is the biggest feature of cEDS, the skin. the only way to be diagnosed is genetic testing which tests for 12 types of EDS, every one except for the hypermobile subtype. in order to be professionally 100% dx with hEDS, genetic testing also needs to be done to exclude other types of EDS and other disorders that would also qualify

[cyan plover]

hEDS is basically a group of types of EDS where we don't really know what they specifically are (that's why the criteria are pretty open too) because of this genetic testing for hEDS also isn't possible (yet) but genetic testing can still be used to make sure you don't have any other known type

[violet zenith]

huh

interesting

My skin also scars really easily

like, i fell a few months ago and scraped a layer of skin off my elbow, and cut the inside of my arm

This was august 1st

theres a visible scar on my elbow

and on the inside of my arm theres a dark mark

(the cut was maximum a cm long)

be it faint, it's still freaking there

okay i googled atrophic scarring

I dont have it

[stuck zephyr]

i think there's only a handful of EDS types that don't have atrophic scarring

i'm 99% sure hEDS and cEDS (type 2) both do

there's 2 types of cEDS the first type is more commonly known as classical like EDS AKA clEDS which is very rare

[violet zenith]

hmm

[nova quiver]

Once again reminded of how disabled I am because I guess I forget or something??

I spent 20 minutes chopping vegetables to make food on a day where I called out of work because I'm too exhausted and now I have to lay down because my scoliosis hurts too much and my knees are weak

Really must remember to call physio :')

[fierce saddle]

That sucks

[weary marsh]

How do you know if a joint is ||dislocated||? Can you always tell by how it looks?

For example a ||dislocated|| hip?

[dense wren]

If it feels wonky than normally yeah. Looks and feeling

[weary marsh]

Oh okay. So pain wise awful

[turbid shale]

Can hEDS or EDS in general cause gas to get "stuck" in the intestines bc I had really bad abdominal pain yesterday and it was relieved after a farted a couple times. Sorry if this is TMI 💀

[weary marsh]

No worries. The question is free I guess

[stuck zephyr]

for us it looks weird and hurts more than normal however we’re very desensitised to our pain cos we walk on subluxed and dislocated hips regularly

EDS causes issues with the GI system so yes it’s very possible

fluffycloud ↩️

[Reply to:](#1146106956621303908 message) Can hEDS or EDS in general cause gas to get "stuck" in the intestines bc I had really bad abdominal …

there could always be a co-morbid like IBS or some kind of food intolerance

[weary marsh]

What I’ve heard the co-morbid with IBS is quite high. I believe I read about 20% or so (don’t take me on the numbers though).

[stuck zephyr]

no idea. EDS affects all connective tissue which includes the digestive system people tend to forget that

[turbid shale]

Ok I'll try and look into that bc I've been noticing my farts are getting stuck more and I'm also bloated

[stuck zephyr]

sounds like IBS could be an intolerance tho. Best to go to a dr if u can

[weary marsh]

Honestly it can be a lot of things

[turbid shale]

Ok I will thanks for the advice tho ❤️

[weary marsh]

Hope you figure it out!

[stuck zephyr]

just as some info /nm

Matthew ↩️

[Reply to:](#1146106956621303908 message) What I’ve heard the co-morbid with IBS is quite high. I believe I read about 20% or so (don’t take m…

[weary marsh]

That’s a lot higher than I thought 😳

[noble coral]

Ja: no problem dude

[stuck zephyr]

no problem dude

fluffycloud ↩️

[Reply to:](#1146106956621303908 message) Ok I will thanks for the advice tho ❤️

everyone I know who has EDS also has IBS including us

[turbid shale]

I also have a lot of constipation if that is related to IBS

[stuck zephyr]

it’s one of the symptoms

[weary marsh]

The symptoms of IBS varies a lot

So yes

[noble coral]

Why

[stuck zephyr]

Google IBS nhs

fluffycloud ↩️

[Reply to:](#1146106956621303908 message) I also have a lot of constipation if that is related to IBS

[weary marsh]

Perhaps you could tell what to search for instead?

[dense wren]

We also get this but we also believe we may have IBS and GERD.

[turbid shale]

I've never heard of GERD, what is it?

[dense wren]

Well…. As we are mildly hypermobile…… that actually makes sense.

[stuck zephyr]

i don't remember what it stands for but ik it's to do with acid reflux

[dense wren]

Gastroesophagal Reflux Disorder
It’s basically chronic acid reflux where your body can’t maintain your stomach ph level

[stuck zephyr]

it's the same thing that corpse has

[dense wren]

Oh, Corpse has it? Huh

[turbid shale]

Oh that sounds really bad 😕

[stuck zephyr]

it scarred his vocal chords thats why he sounds like how he does

✨Mechanically Unhinged ✨ ↩️

[Reply to:](#1146106956621303908 message) Oh, Corpse has it? Huh

[dense wren]

Yeeesh

[weary marsh]

Cool

[stuck zephyr]

we've had reflux since we were like 14 we just kinda accepted we probably have it lol

[dense wren]

Yeah. I get that.

[stuck zephyr]

we are never without that burning sensation of our stomach acid yeeting itself up to our mouth lol

[dense wren]

Same here. It gets worse with carbon, juice or water and sometimes tums or alke-seltzers don’t help either.

[dense wren]

Sameeeee 💀💀 I hate it.

[stuck zephyr]

oh my gosh orange juice is the bane of my life

wait i forgot i dont have to proxy lol

[dense wren]

Especially when you are trying to lay down, or the chronic burning pain in your ribs

[stuck zephyr]

don't even

[dense wren]

Same!
It’s why we have cut back on most fluids.

Even have to be careful with our electrolyte drinks.

[stuck zephyr]

we just deal with it lol

[weary marsh]

What is an electrolyte drink? I hear of it all the time, but haven’t managed to get my head around it.

[dense wren]

Gatorade, Powerade, Electrolit.
All have lots of vitamins and minerals. Commonly called sports drinks.

[weary marsh]

Thanks for explaining!

[dense wren]

No problem!

Glad that helped

We are sometimes crap at explaining

[west scroll]

I was doing my hair just now and my elbow just painfully popped and now when I bend it up all the way it hurts on the inside of my elbow

I’m icing it just incase but my sister thinks I dislocated it and that what I hope didn’t happen because I play instruments and this would effect my playing

especially for bass guitar and violin

anyone know how to tell if your elbow is dislocated?

[wispy anchor]

Yeah, I do

[wispy anchor]

Stick your arm out and see if it goes back further than usual and or press the area where it sticks out and if it moves it likely is

[west scroll]

I couldn’t tell if it was moving but as soon as I touched it a little bit it started hurting

[wispy anchor]

Is it bruising?

[west scroll]

no

it’s not moving so I don’t think it’s dislocated

but when I stuck my arm out like I normally do (with hypermobile elbows) and it hurt in the same place

I probably did something to my ligament but I’ll have the chiropractor look at it once I go this week

I’m just gonna tape it for now so then it has more support once I figure out how to tape it

[stuck zephyr]

is it normal to feel like u have pins and needles sticking into u on the parts of ur body u sit on

[fast locust]

Normal? No. Common? Probably

[stuck zephyr]

normal within EDS I meant sorry

[fierce saddle]

Idk i get that

[weary marsh]

Can you milder the symptoms by taking supplements with collagen?

From what I’ve understood EDS is caused by lack of collagen. A friend of mine recently asked this and I couldn’t find an answer online. Sorry if this is intrusive, it’s not meant to be. I’m just trying to understand more of this illness.

[stuck zephyr]

it's not a lack of collagen it's a lack of functional collagen it's too stretchy so no collagen supplments won't do anything

[weary marsh]

Oh okay. My bad

[stuck zephyr]

if u just google "does collagen supplements help EDS" you'll find ur answers

[turbid shale]

I've had a dislocated, possibly subluxated shoulder for approximately an hour now, and I already attempted to relocate it and it's still not going back in, do you guys have any tips bc I jst might crash out atp 😭😭

[violet zenith]

Got a wrist brace

[lucid sundial]

if you have any medical tape i’d recommend trying that. look uk tutorials on tiktok or youtube for taping and tape your shoulder into place to stop it from moving

[turbid shale]

Ok tysm I did that and it somehow still hurts but now I have vascular pain and pins and needles 💀

[lucid sundial]

maybe keep it in a sling till it stops dislocating? the tape will keep it in place and the sling might help with the pain and keeping it level to your heart so there’s no blood pooling

[turbid shale]

Ok thanks

[hard basin]

any tips for aching back between shoulders aswell as a bad shoulder too

my back always aches between my shoulders
i subluxed my shoulder the other day and its really sore still in certain positions

if i sit cross legged, typing leaning forward with my arm on my knee, its sore like its trying to come out again

[turbid shale]

When I'm at home, I usually put a pillow behind my back so it supports it

[dense wren]

I hear medical tape is good for keeping a shoulder in place. Have yet to try it myself.

[inner mortar]

For me medical tape is good for supporting joints and can relieve pain

[turbid shale]

Nexcare ⬆️ ✨

[west scroll]

yes, this happens to me all the time. If you sit on the wrong nerve or if you slouch too much it causes the pins and needles

[west scroll]

it's probably swollen... have you iced it? also how can you tell you subluxed your shoulder (I'm asking for my own shoulder problems)?

[turbid shale]

If you start getting pins-and-needles sensations and/or vascular pain, if it starts to swell, if it hurts a lot, if the area starts changing color, if blood pooling starts in the affected arm, and if it's visibly dislocated/subluxated

[hard basin]

i went to move after waking up and i felt it slip then snap back and after that it was hurting.
now its hurting with most movements after resting (if im still for a long time)
thats how it normally is for my shoulders

[west scroll]

ah

my elbow did something weird on monday and so I went to the chiropractor yesterday and she said it could be caused by my wrists and/or shoulders but after she adjusted my right shoulder (which has pinched and has swelled before as well as grinds a bit) my shoulder became swollen for the rest of the evening and it keeps swelling off and on a lot more

so I’m pretty sure my shoulders are the root cause to the elbow thing

it could also be from a loss of cartilage but these shoulder problems started happening a while ago

[hard basin]

today i found out that EDS can cause a blue sclera (the white of your eye)

i noticed in a photo i took trying to show off my eyes, my sclera looked blue

it just adds to reasons i need my rhuematology refferal to go through so i can get checked for eds

my eyes so yall can tell me if yall see the blue too

because i made sure to use no filters, only flash

(not trying to use this as diagnostic tool, just genuinely curious if you guys see it too)

[fast locust]

I never knew rhat was the cause, interesting

[hard basin]

its not always but if iron deficiency and other stuff is ruled down for the person, it can be due to eds

[dense wren]

Wait, really? Hmmm

Hmm. I do not have that. 🤔

[hard basin]

It doesn't happen in everyone but it is something that happens

[violet zenith]

does this count as blue-ish?

[hard basin]

i cant tell

[dense wren]

Anyone else’s top of your feet hurt when you walk? I think it’s something to do with my weak ankles and knees.

But I get stabbing pains in my ankles and the top part of my feet.

[latent valley]

I also get that

[hard basin]

i get shin splints when walking

i could walk that distance once and be fine, then walk the same distance and get the worst shin splints

no pattern to it

[dense wren]

Yeah that’s how it goes with my Dysautonomia and other stuff. It’s all just about listening to your body and not overdoing it when you have more able days.

[violet zenith]

i get that pain too

idfk

i hate it though

(I dont have anything diagnosed but im suspecting EDS)

[dense wren]

Ah I’m sorry

Me too. I suspect mild hEDS

[violet zenith]

Same

hEDS cause I got that extra bendy

[violet zenith]

Volleyball hit thumb and still really hurts. If not better tmr will get it checked out

Also hurt shoulder, both wrists and one ankle somehow but they were fine after a couple minutes but the thumb is still pretty bad

[lucid sundial]

do you have any other symptoms? there are a lot of other conditions that can cause hypermobility including just being hypermobile

[violet zenith]

Oh yeah definitely

All the Google able symptoms of hEDS I've got

just specifically Hypermobile flavor because ... Well... I can sit on my knees, and put my back flat on the ground, and then casually sit back up again

And other bendy things

[lucid sundial]

here’s a link to the heds checklist if you need it. easier and more correct than just googling everything

[lucid sundial]

https://www.ehlers-danlos.com/heds/

[weary marsh]

Got diagnosed with EDS sort of last week… the doctor didn’t want to write it down though since ||“it can’t be cured”.||

It bothers me because I can’t really get any help for it if I don’t have the diagnosis officially.

The doctor says to manage symptoms, well that’s hard without the diagnosis on print.

I don’t know what to do really. All of the methods I’ve used earlier In not allowed to use since it apparently ||hurts your connective tissue||. So now I’m just left with a bunch of ||pain|| and no help with manage it.

[stuck zephyr]

has anyone had to pay for genetic testing and if u did which one did u choose (uk only preferably)

[cyan plover]

yeah for me he didn't even want to look into it because he said "if I do I'll probably end up on hEDS and that's not that serious and can't be cured"

[weary marsh]

That’s so rude. This affects every second of our life’s.

I do understand if the doctor didn’t want to put it on paper because we haven’t looked into every possible reason. I think they hope that if we look deeper there might be a condition, that isn’t as spot on, but that perhaps can be cured rather than “controlled”.

There are prestige in finding a condition that can be cured. TBH they don’t want you around their feet for the rest of your life.

[stuck zephyr]

low impact exercises and PT is what we've been told

Matthew (pls @) ↩️

[Reply to:](#1146106956621303908 message) I don’t know what to do really. All of the methods I’ve used earlier In not allowed to use since it …

[weary marsh]

Yeah. Can you train the muscles in your fingers though?

[rare sierra]

GG @weary marsh, you just advanced to level 10!

[weary marsh]

Those are the once that keeps dislocating for me 🥲

[stuck zephyr]

it's shit like this that has now put us in a position where we have been misdiagnosed with hEDS when we more than likely have EDS cos the rheumatologist didn't even bother to check the first exclusionary criteria which would've saved all of this 5 years down the line

stan754 [tech support] ↩️

[Reply to:](#1146106956621303908 message) yeah for me he didn't even want to look into it because he said "if I do I'll probably end up on hED…

finger splints

Matthew (pls @) ↩️

[Reply to:](#1146106956621303908 message) Those are the once that keeps dislocating for me 🥲

[weary marsh]

I’ve looked into that, but since I don’t have the diagnosis on paper I can’t access any form of aids.

[stuck zephyr]

Amazon

Matthew (pls @) ↩️

[Reply to:](#1146106956621303908 message) I’ve looked into that, but since I don’t have the diagnosis on paper I can’t access any form of aids…

“Finger splints” in Amazon search

Matthew (pls @) ↩️

[Reply to:](#1146106956621303908 message) I’ve looked into that, but since I don’t have the diagnosis on paper I can’t access any form of aids…

[sterile wedge]

Otherwise - I make finger splints myself - just with some cheap wire. They work pretty well and it cost me 10AUD (5gbp) for all the supplies

[nova apex]

oh yeah theres a tutorial in this thread and i think its pinned

https://vm.tiktok.com/ZGdLrfu3V/

downloaded version for ppl who dont have tiktok

@weary marsh you might be interested

[hard basin]

ring splints/finger splints are seen also as a decorative thing so noone thinks twice when you buy them tbf

and alot of aids/accomodations you can get without needing a diagnosis on paper

you can buy joint supports at most pharmacies and beauty places where i am

all the major beauty stores have wrist supports, ankle supports, knee supports and elbow supports in stock

i dont have a diagnosis on paper for any of my joint issues, but i got ankle supports from orthotic department at local hospital

also, even if it isnt on paper, the doctors when they make any kind of possible diagnosis, have to write it into the system (a summary of the visit, why you went, what tests were done and what the conclusion was)
so it should be somewhere in the system, even if its buried

[weary marsh]

I was thinking about doing that.

[weary marsh]

I figured that. Meanwhile I think it adds some weight when you try to accommodate for yourself in school etc. At least they aren’t rather happy about accommodating if you don’t have a official diagnosis where I live.

Also, buying mobility aids by yourself can become quite expensive I think. I’d rather have a doctor or other profession be involved in that process to make sure I get what’s suitable for me.

[weary marsh]

Thank you. I will look into this

[sterile wedge]

Hi!!
I have been having really terrible hand / finger pain. I am in the middle of exam season and studying / hand-writing loads. I have been using wrist braces and finger splints but my fingers still feel like they are on fire!! Does anyone have any tips for coping with the pain and finding motivation to keep studying when it brings so much pain? Or ways to make it less painful?

[weary marsh]

Does typing on a computer brings you the same amount of pain?

[nova apex]

i also use wrist support. i avoid hand writing as much as i can. i try to take breaks but ultimately my hand ends up locking up, i cant handwrite for long.
personally typing on a computer hurts a lot less, so maybe u should try that if its something u can/want to do /nf
other than that idk, i have pain medication i have yet to try (im afraid of side effects LMAO), also ive found myself clenching my entire hand when i write (which makes the pain worse) so i make sure to take breaks and massage my hand but it takes longer

im multitasking so i hope my message makes sense lol

[sterile wedge]

Thank you - yeah i have a hand written law exam and its the kind where you are expected to fill 60 pages of blank paper with writing!! So typing sadly isn't an option!! Ill try massaging my hands and see if that helps

[nova apex]

they don't provide accomodations where u study? :0

[sterile wedge]

they do - but only extra time - my disability support lady said I couldnt type my exams!! which is really bad!! Like i have both hyermobility in my hands and dysgraphia which together make handwriting really hard!! So its very annoying

[nova apex]

D:

your disability support lady sucks /vlh

[sterile wedge]

yep

[dense wren]

Got a shoulder brace for my right shoulder! Hopefully it helps!

Can I sleep in it?

[west scroll]

depending on how tight it is but you normally shouldn’t sleep in braces because it could cut off circulation

if you need shoulder support while sleeping a safer option would be kt-tape for at night

[dense wren]

Ok.

[dense wren]

I usually sleep on my back or my left. So I should be ok for a while. It’s not on too tight. I’ll just have to keep an eye on it til I get KT Tape.

[nova apex]

i hope it helps!!!!!!

what does it look like? /nfta

ive been searching for hip/shoulder support but they all look very inconvenient and like they wouldnt work very well

[dense wren]

Idk if it should be censored but
(CW; Bare Chest)

[dense wren]

Anyone have any recommendations for how long I should wear it?
Hurts when I take it off but the Velcro is rubbing on my underarms. Causing friction burns.

Like is it ok to wear it over shirts?

[weary marsh]

It doesn’t say anything about that on the package?

[dense wren]

Didn’t really sadly.

Ordered from Amazon

[dense wren]

Researched it bit

[weary marsh]

Oh I see.

[gritty patrol]

I wear my ones over t shirts

[weary marsh]

I have 20 - 10 dislocations/day. My doctor who helped me try out mobility aids looked terrified. I’ve always thought that’s a quite fair amount, how many do you have?

(That’s only my knees also)

[fast locust]

I have one of those but it feels weird to wear

Also I got a job and immediately flared up when I walked in, couldn't bend my knee without it popping 🧍‍♂️

[dense wren]

It does. I agree. But it works.

Dislocation you can’t move, subluxation you can.

That’s the only difference I can tell.

[west scroll]

don’t wear it 24/7 but definitely where it when your up and moving around a bunch. and for the friction burns it might help to put a bandaid over where the velcro is or some pre wrap or something.

I feel like wearing a shirt under it will make it even more uncomfortable

[dense wren]

No problem. Glad that helps a bit.

[weary marsh]

I’m getting these for my knees. The doc says I should only wear it when I’m doing things that are hard on my knees (when they dislocate). The thing is that happens all the time when I’m home, not doing any particular.

Also does anyone have tips on how to tape your elbows, mine hurts like crazy and they are going back and forth trough subluxations.

[fierce saddle]

Does anyone have any advice for like a brace forike your thumb? I pop the joint out of thr socket wayyy to much as a stim and it is causing me alot of pain because of it (ik its my fault but argh) any advice on if i could make one like a ring splint? Or do i have to buy one, i have ti work on stopping the stim

[lucid sundial]

depending on how your thumb dislocates depends on the splint you might need. your best bet for stability and longevity is to buy one. to break the stim look into fidgets with a click feeling. i like my fidget cube

[fast locust]

Tips on avoiding flares at work? Pain meds don't work and I don't have braces so idk what all I have to work with, and it's in fast food so I'm standing %99 of the time

[dense wren]

Another one of my fears. So I get the pain. But I do have a brace and my knees mostly are ok….. somewhat

[wary crescent]

( I’m not diagnosed with hEDS but I’m diagnosed with hypermobility so I’m just waiting on my rheumo appointment )
Anyways. Anyone have any tips on how to apply KT tape on the shoulder? Mine is being stupid and clicking and hurting so I’m seeing if the tape at least mildly helps

[wary crescent]

Never mind, I got help with it

[dense wren]

When you sleep on the arm you aren’t supposed to sleep on after giving your arm a break from the brace 😅💀

[fast locust]

Guysguysguysguysguys I'm so happy oh my gods

Anyone have tips for getting used to them once they come in?

[weary marsh]

Congrats!!

[wary crescent]

Congrats, that’s so cool

[untold bane]

I tested mine out at home for a day or so, to get into the groove, an also to see if I needed padding with mine

[dense wren]

How do you deal with sore hypermobile joints? Other than hot/cold packs.

[stuck zephyr]

baths if u have one

[fast locust]

So fucking happy

[fast locust]

Teehee

I used them yesterday, just one as a cane, but it helped so much

[stuck zephyr]

woooooooooo

[dense wren]

Wooo!

[fast locust]

Using them feels very awkward right now, I've never tried to help myself before so it'll be weird for a while

[nova apex]

anyone has taken acupan/nefopam (painkiller) and is willing to share the side effects they experienced? (please keep in mind i have emetophobia and need warnings and spoilers and no detailed description)

i took it for the first time yesterday, here is what i experienced

• tingling in my tongue/lips/throat for 5 minutes after drinking it, then my lips went really dry (this is not an allergic reaction ive checked and its a side effect)
• TW emetophobia ||heavy nausea 15 minutes after taking it, then it came and went back in waves but it was less severe, lasted for about an hour||. i layed down with my chest and head elevated.
• lightheadedness and veeeery sleepy. started like 30 minutes after i took it and lasted for about 1h-1h30?
• idk if its related in any way but i had a bad night, kept waking up and couldnt fall back asleep.

so yeah, experience with acupan/nefopam is welcome

[weary marsh]

Congrats!!

[dense wren]

I would talk to the doctor right away with the nausea and lightheadedness

[nova apex]

please censor ||nausea||
okay, i need to see my doctor anyways so i will book an appointment. but know that these 2 things are listed on the notice as common side effects (1 in 10)

[shell lynx]

sameee

[weary marsh]

This exact thing happened to me a couple of years ago. I used the same exact words to describe it 😳

[west scroll]

omg finally someone who had the same thing happen

it’s basically like the ligament in the back of my knee getting sharp pain if I bend it too much

the worst time it happens is when I go to sit down and in the middle of that my knee just locks up and jump scared me

[hollow drift]

Talking to my GP about my EDS symptoms next week (my physio is brilliant and made me an appointment) - any tips on how to communicate / what info they may need (ie. What should I know about my family history) - and what might happen ?

[weary marsh]

You should know if family members have had similar symptoms as you or if they have had any diagnosis. Also I did write a list down of all the common symptoms and then marked all that I have. It can be a good support if anything during the appointment.

Do you know about the screening tool for EDS?

[weary marsh]

My first ever dislocation caused me to need ||surgery|| cause a 2 cm piece of the bone broke lose.

I still have those strange pain experiences today.

[weary marsh]

When I spoke to my doctor they didn’t want to diagnose me because there is no treatment. There is however still a lot of things to access if you get the diagnosis. Maybe the most important: you get the right diagnosis and don’t have to continue searching.

If you really believe in this, and if the doctor don’t have a better explanation, I would say push for a diagnosis. Things get a bit easier with it on paper.

[azure juniper]

okay I know it's probably bad to try and purposefully do this but does anyone know how to pop their sternum? Mine went out if whack last night and while I could get it to sorta go back from where it was super duper painful but not fully and it's still not in the right spot. So if anyone has suggestions or something it would be greatly appreciated 🫶✨

[weary marsh]

That sounds awful. Is it swollen?

[azure juniper]

I don't think so, I'm not sure if a muscle jumped over something or what, it's just really weird (and painful but what else is new lol)

[west scroll]

I think I have made mine pop before? idk but whenever I stretch my upperback and shoulders I interlock my fingers behind my back, twist my shoulders inwards, and then push them backwards. (be careful if you do that though cause you could accidentally dislocate your collar bone) but when I undo the stretch I then squeeze my shoulders inwards and then something in the front normally pops, not sure if it’s the sternum though…

[azure juniper]

yeah mine usually pops kinda similar, usually I do a handstand to get it to pop. A muscle whatever it is jumped over a rib big time a few minutes ago so that part of the pain is gone and it's just local to the joint again. It feels crooked? idk how to explain it, hopefully it'll pop at some point it takes a while sometimes. Thank you!

[west scroll]

Ik some people don’t really like this idea but you should try going to a chiropractor for it.. they might be able to help in some way. I go to The Joint chiropractic (which is technically a chain) and they specialize in helping people with chronic pain, people into fitness, and then also people with joint pain or joint injuries

the people at the one I go to are pretty cool but you should see if there’s one near you

also their prices are evidently a lot better than other places

oh yea and the best thing about them is that they’re a walk in clinic type of thing

so no appointments needed

[velvet vale]

it's very very dangerous to have a chiropractor adjust anything in your torso of neck if you're hypermobile, please do not recommend it. it can cause things like popped lungs and paralysis

[azure juniper]

I'll try to call the Orthopedic my PCP referred me to months ago again, hopefully they'll actually be able to help me out 🤞🤞 thanks again for all the responses on here!

[azure juniper]

I Got it to Go Back 😤👍

[weary marsh]

Please tell, how did you do? /gq

[hollow drift]

I'm aware of it but don't understand some of it !

[weary marsh]

What part of it is it that you don’t understand?/nm /gq

[azure juniper]

I had to squirm my torso around to find where it hurt most, it's kinda hard to describe but followed my body and there's a certain pain that I know if I follow it something is trying to go back so I very carefully keep going, that's when whatever "jumped" moved big time (my best guess is a muscle over a rib) and then I could get it to go with the handstand trick I usually do to get the joint to pop. V weird and prolly bad, but y'know at least I can breathe now lol 😂/hj

[weary marsh]

You mean you pop the joins to make it hurt less or what?

[hollow drift]

Some of criteria 2 feature A about teeth/heels etc.

[azure juniper]

usually yeah, but sometimes I can't pop them until something either grinds or jumps and once that happens then the joints pop. I'm always in pain it doesn't get rid of it exactly, but when things are unbearable is when things are "stuck"
idk if I'm explaining myself very well lol
usually it happens in my back and neck, my elbows shoulders knees wrists, honestly anything that moves freely. It hasn't happened with a spot I couldn't squirm around in like my sternum so I wasn't sure if anyone had tips or tricks and thought what the heck I'll give it a whirl & ask

[weary marsh]

Poping joints can be directly harmful for the joints and cause you big problems if you do it regularly. However if the joint is “stuck” as you explain it, it may be better to try and pop it back into place.

I can very much relate to what you are describing. I’ve been recommended to use mobility aids for my knees (which is my biggest issue) to make it dislocate less. Also rehab to build muscles and resistance. When things dislocate I usually tape it (if it’s swollen) and hope it goes back to place by itself. As for me, trying to push it back into place is more painful than letting it be. However, I’m not a doctor and I don’t know what’s best to do in that situation. You know your body best.

[shell lynx]

i about 3-4 weeks ago dislocated my knee and am currently in a brace and crutches (crutches not all the time) and in another 1-2 weeks have to permanently go to physiotherapy (sorry if u dont know what that is its joint strengthening and whatnot) for all my hypermobile joints and all my joints are effected by it including my jaw and everything else and im not too excited about it

[azure juniper]

I'm definitely calling the ortho near me tomorrow, because people have told me all my life that this is fine 🫠 thank you for your help!! while stressful this has also been really validating /g 🫶

[weary marsh]

I hope you receive the help needed and that I didn’t gave you to much stress /lh

If it’s to any help I’m going trough the same thing atm.

[weary marsh]

Yeah that sucks.

[azure juniper]

It was honestly more validating than anything, and thank you very much!
I have an appointment with an orthopedist in january so hopefully that'll go somewhere. Good luck with your own journey, I hope you're doing as well as you can be! /g 🫶

[sterile wedge]

How do people mentally deal with ||weightloss|| as a side effect from eds complications? Like it’s so mentally hard when I have changed shape so much in a small amount of time and I look super different. and people are telling me how great I look when I feel terrible about it. Does anyone have a similar experience and how did you look after your mental health?

[azure juniper]

yes, I hate being told how good I look!! especially when it's from people that know ||I can't really eat|| it's so disheartening. The clothing part sucks too, I had gotten a good number of new shorts and other things that I now have to clip&pin together and/or hold up to get them to fit, I hardly got to wear them when they were comfortable. You're not alone in that department, I'm sorry you're going through this. I don't have much advice to offer other than asking the people saying things like that to not comment on ||your weight||
if anyone else has more to give that'd be awesome! /g 🤍

[sterile wedge]

The clothes thing really sucks! I have been re sewing all my waistbands on all my clothes so they fit better but it has been quite a big effort! And I am worried that by the time I am done I will have to restart!

[azure juniper]

exactly that's why I haven't bought new ones or anything, I don't have enough money to chase after the right size :,,,) I wish you luck with resewing yours that's a much better idea, and good luck with your health journey as well!! I hope people in your life can understand that it's not a good thing you're going through even if the outcome is something seen as "desirable" (not saying they're bad people at all! usually they just don't think of stuff like that in that way because they don't have to <3)

[sterile wedge]

Thank you 💕 you too!!

[weary marsh]

Anyone else feels like the cold increases their symptoms and pain? My knees dislocate a lot more and I can barley be outside due to pain.

[vestal prawn]

Yes! If I’m outside I’m the cold especially at night my knees/legs always hurt after

[weary marsh]

Those of you who uses knee support things (I don’t know the terminology sorry) how do you avoid getting ||rashes|| and ||wounds|| due to pressure?

Also, if I don’t tighten it enough they will fall of at the same time the ||blood pressure|| is decreasing in my feet. It’s a paradox that I haven’t yet figure out how to cope with. Any suggestions is highly welcomed.

[nova apex]

i take breaks. still get ||rashes||, i also get bruises, but thankfully no actual ||wounds|| (yet?)!!
like. when i have to walk or stand i wear them. but when i can sit for at least 10 minutes i just take them off. it can be annoying because i have to take my shoes off in order to take my knee compression off, but i get used to it.

for the circulation thing, i struggle with it too. i struggle with my legs going numb when standing or sitting on them. so the compression on my knee cuts circulation even more and my legs go numb faster. that is an issue i havent been able to solve yet. might ask my rheumatologist about it when i see him in january.

[weary marsh]

Also the sweat after you take them off 😓

[nova apex]

yes :c

[regal fox]

Is anyone else here diagnosed with hEDS but has slight vascular and organ fragility? I was diagnosed with EDS a few months ago but I have deep retinal hemorrhages, moderate diverticulosis, and have had a history of colonic torsion, which my pcp said she’d never seen in hEDS. I present closer to hEDS externally (though my skin is pretty stretchy in a few places), but cEDS/vEDS internally and we’re kinda in uncharted territory.

[velvet vale]

Have you had genetic testing done? It's possible to have multiple types of EDS

[regal fox]

I’ve been tested for everything but clEDS, which they are going to do a genetic test for next week. That type is so rare though so I don’t expect it to come back abnormal, but I do have foot/hand deformities consistent with it, so we’ll see what happens

[west scroll]

it is possible for organ type issues with hEDS I think but it does seem like you have multiple types

[fierce saddle]

I met someone with eds irl yesterday

[slate dust]

omg i did too

funnily enough it was in a hot topic at the mall

[west scroll]

I just found a video on pinterest that shows some exercises specifically for the knees to help with knee pain and what not so I'm gonna try them out and if they help I'm going to list them here (I would send the video but it won't let me)

[spare cradle]

hey does anyone know any exercises that are good for strengthening the muscles supporting your shoulder joints?

[nova apex]

idk. ive been told to use an elastic band and pull on it

like so

[lucid sundial]

pls be careful bc stretches on hypermobile bodies aren’t always safe like they are for normal bodies

[spare cradle]

Awesome thanks so much!

[west scroll]

they’re not stretches…

[sterile wedge]

This is so random, but every morning when I wake up I cant feel my hands. Does anyone else with eds experience this? I dont sleep in a way that would cut of circulation and Im not overlly concerned - its just very weird!!

[nova apex]

i do and i have for years yeah

its really annoying

but i get my circulation cut off really quickly and apparently i tend to toss and turn in my sleep so im not surprised

[inner mortar]

Yeah my veds flares up in weird ways definitely experienced not feeling body parts for no reason before but it usually comes back after a bit - if loss of circulation/ feeling isn’t common with whatever type of eds u have u should consult ur doctor though

[grave ember]

There is a YouTube channel by someone called Jeannie DiBon that has a lot of videos about exercises for hypermobility which I find really helpful. There's also a few videos specifically about the shoulder joints on there.

[grave ember]

Oh, I've also been getting that a lot recently. Don't have an EDS diagnosis (yet) but I've been suspecting I have either EDS or HSD for a while.

[fierce saddle]

Eigh my knees are so locked up

[wary crescent]

That’s a thing in EDS?

( I’ve been wondering why my knees do that and I didn’t think it was related to all the other bits also pointing to EDS )

[fierce saddle]

Not sure, i just had my legs streached out and hyperextending for too long so they were painful

[wary crescent]

Huh

I’m gonna have to move that in my notes from ‘random pain’ to ‘possible EDS bits’

[fierce saddle]

Welp, id def search it up to see if it is

[weary marsh]

My knees also tend to lock. I used to explain it to people as they locked and I couldn’t move. Turns out my doc explained it was dislocations.

Sometimes though they tend to dislocate for longer periods (usually they just go out and then back in) which I when I say they “lock”. Do you have the same definition or what happens when your knees lock? /gq

[wary crescent]

Idk about Rat but for me, it’s both, I tend to hyperextend my knees when I stand so if I stand too long I get really achy knees and they get hard to move but also sometimes my knees just lock, no pain, they just get really hard to move. [ And sometimes my legs stop working ( as in I can’t move them at all for a bit ) but that’s unrelated to the convo, my body is just prone to spontaneous failure ]

[ I know the speculated reasons why and they’re not serious so I’m not concerned or anything ]

[weary marsh]

Like the ||blood supply|| is cut of?

[nova apex]

for me it is. and for my friend diagnosed with EDS it is too.

[wary crescent]

Actually, sort of, yea. I have really bad circulation so they just kinda stop working if my circulation is especially bad that day

Or the bad circulation can cause a really prolonged muscle cramp. It can happen 2 ways

[fierce saddle]

Yea same

[rare sierra]

GG @fierce saddle, you just advanced to level 21!

[west scroll]

does anyone here have issues with their leg continuously trying to cramp when you bend it? I just got woken up by me bending my leg and then my calf muscle starting to cramp up and now it keeps trying to cramp up again when I bend it

[weary marsh]

I get waken up from time to time due to cramps in my legs. Haven’t had it when bending though.

[inner mortar]

If I stretch my leg mainly in the evenings I find my leg begins to cramp I just have to be careful not to stretch too far when lying down I find massaging the muscles in my leg helps sometimes

[west scroll]

yea I squeezed/massaged the shit out of my leg when it started cramping and cause the pain kept trying to travel to my knee

I think there’s a knot in my knee cause it hurts when I press on the spot it was cramping at so I slapped a solanpas on it

aka a patch+biofreeze

[weary marsh]

New symptom unlocked
I’ve got constant pain under my feet. It feels like the ligaments are in full blown cramp. Not to much pain, just discomfort.

Also when it gets cold I can barley sleep due to cramps in my legs.

Anyone else experience any of this?

[inner mortar]

I mean the ligaments in me feet can feel like they are cramping mainly in the evenings when I am tired. I kinda just have to push it a bit till it feels back into place

[fierce saddle]

I think im looking into again if wether my symptoms could be heds, i feel like they def could be but idk

[spare cradle]

finally got diagnosed with heds today!

[stray wind]

Has anyone here had TMJ problems that they had to wear a splint to wear at night for? Was it comfortable to wear and was it helpful?

[untold bane]

i never fully extend my legs and arms bc its uncomfy for me, but i just realized that my elbows are hyperextended and my knees are almost certainly as well

[weary marsh]

TW: Injures
What does it mean to get ||scars and bruise|| easily? A couple of days ago I went out of a public toilet and my thumb touched the handle that happened to be very ||sharp||. I’ve got a ||scar|| after that. Is it normal or…?

[lucid sundial]

if it was just a few days ago it’s probably not a scar. i’d say give it 2 weeks and see if it sticks around or changes.

[vapid totem]

Hi! So uhh hypermobile here, fully just dislocated my hip and can't get it back in by myself, does anyone have any recs of braces/compression stuff that could prevent this happening again?

[grave ember]

Hip braces are a thing that exist, but I don't personally have any experience with them. But I saw a video on YouTube where someone recommended one she uses at night to prevent her hips from dislocating in her sleep.

[grave ember]

It was called a "bilateral hip abduction brace", in case you'd like to look into it

[vapid totem]

Thank you!

[grave ember]

I also think I've seen someone talk about compression garments to help with hypermobility but idk if there is something for the hip joints specifically

Let me see if I can find out more

[weary marsh]

Oh okay. Thanks

[grave ember]

I can't find the original video about the specialized supports and bandages, but I found out there are compression shorts that also might help with hip stability

[rare sierra]

GG @grave ember, you just advanced to level 5!

[spare cradle]

subluxed my hip falling off a ladder and damn it’s so sore

[sudden inlet]

hey i have hEDS newly diagnosed any tips

[fierce saddle]

✨braces✨

[misty sleet]

can I chat here? I have HSD. Sorry if it's the wrong spot.

but regardless I hate being hypermobile. My mum hugged me yesterday and literally just that caused my shoulder to pop out. Like, dude.

[nova quiver]

I'd say so yes

[west scroll]

if it’s the ligaments under your feet it could be from plantar fasciitis

[west scroll]

yea of course! You’re welcome to chat anywhere you feel you want to!

[misty sleet]

thank you!! that means a lot

I always feel really bad/awkward being in EDS spaces so that's nice to hear :))

[west scroll]

I mainly made this forum for people to talk about EDS, but since a majority of people have hypermobility type we will always let in the HSD peeps

[misty sleet]

ahh, yeah, makes sense. thank you

[low dagger]

Hi, I would like to know more about hEDS, the diagnostic criteria and how it affects people. I have been diagnosed with POTS, MCAS and generalised joint hypermobility with low-moderate joint pain and chronic headaches. I know a lot of these things often come with heds, but not necessarily. I wonder if I have it, but also my pain is not severe and I have never dislocated any joint, so I just want to hear what it's like for people. Thanks!🙃

[halcyon spear]

hi i think i may have heds and want to discus with some people about it

[novel willow]

What would you like to know? 🙃

[golden wind]

Just thought Yall might think this was cool

[ember musk]

sun spider is amazing, you can also see them in the chase in spider man-across the spider verse

[fierce saddle]

Ooh cool

[golden wind]

Yeah I love them :D

[halcyon spear]

just to undertand it

[novel willow]

Like what specifically? /nbr

[halcyon spear]

Like how to deal with it the diagnosis proces and if i rly have it and just to know about it

[ember musk]

I really like roller skating but because of the eds it makes my legs hurt so much, is there anything I can do to dial down the pain or do I just need to try and skate in short bursts

[grave ember]

Do you have any bandages or braces?

[ember musk]

no not atm

[grave ember]

Then those might be worth trying

Some sports stores, health retailers or pharmacies sell relatively cheap knee and ankle bandages

[ember musk]

alright, thank you!

[grave ember]

They don't offer as much support as medical bandages or actual brace, but might a way to try out if bandages work for you

Another thing that might be helpful is physical therapy exercises to get more stability

[rare sierra]

GG @grave ember, you just advanced to level 7!

[misty sleet]

My right shoulder has been partially out for like 2 days and I'm not concerned per se but this is the longest that it's happened O.o
Usually it pops back in within a few minutes and rarely hours but days? this is new. Cool.

[halcyon spear]

Guys just now i got this sharp pain near my heart chest area anyone know anything about it ?

[nova apex]

i tried making the finger ring/splints for hypermobility :] (they're a little tight rn but i'll fix it)

1. finger straightened normally w ring
2. finger bent normally w ring
3. ew uncomfortable : finger bent backwards without ring
4. trying to recreate picture 3 but with the ring : finger not bent backwards, success!!

[novel willow]

Does anyone know if orthopedics helps with Eds? I’d like to hear others experiences

[stuck zephyr]

Is it a symptom of eds to not be able to stand for too long cause your feet hurt really bad (I have flat feet) and it gets so bad you almost fall because your legs start giving out??

[sterile wedge]

yes - In my experience, one reason for foot pain is actually pots as well as flat feet. If you get blood pooling, standing for too long can cause pain in the feet and ankles

[nova apex]

flat feet r a significant occurrence in EDS yeah

[stuck zephyr]

Thank you both for your answers! I thought so but don't want to associate it with eds of I'm not sure. Still gotta get tested again after being dismissed the first time after one look

[balmy lichen]

Does anyone else get really ||sore, dry, or itchy eyes? || just curious because I’ve been in a flare up and have been getting this

[novel willow]

Yesss, mine doesn’t just happen during flare ups though.

[balmy lichen]

Ok glad I’m not the only one lol

[warped flax]

yeess why does no one talk about this

[rare sierra]

GG @warped flax, you just advanced to level 1!

[river tiger]

Hi new here!! I've got hEDS 🙂

[tribal coral]

Hi! I’m new on here! I’m not diagnosed yet so I hope it’s ok that I’m here. I can’t go out for long periods of time or stand for very long without a lot of pain and dizziness, and I bought my first ever cane today!!!!! (while I wait for diagnoses and a doctor to tell me what I should do, I would still very much like to have a life in the meantime). I bought it online and haven’t told my parents about it, because they would think ||I don’t need one or that I’m giving up or over-reacting|| . I wanted to share that on here as I am very excited about it and can’t talk to people in real life about it really. I’m gonna go a walk with my friend next week :D

[weary marsh]

Welcome! I just wanted to say that accepting isn’t in any way to give up. If anything I think it’s necessary to be comfortable with the thought of where you’re at today in order to move forward and find solutions. /lh

You go!

[nova apex]

also theres #1208395612853243935 which is pretty active too! if ure interested :)

(not saying ur message shouldnt be here!! just saying u might be interested in this other thread)

[tribal coral]

Thank you guys for responding! I have not figured out how to socially use discord correctly so sorry if this is awkward lol. Massive hugs!!!🫂

[weary marsh]

No worries! You’re doing great /lh

[tribal coral]

Haha thanks! /lh

[novel willow]

Has anyone been in orthopedics for hEDS?

I’m going tomorrow and I would like to know what the first day is like in general

[untold bane]

question! So I have been recently realizing that i have a lot of the non diagnostic symptoms of eds. This is specifically talking ab my knee caps here. Ive always been avoident to locking my knees fully back, as it is very very uncomfortable. I have been diagnosed with kneecaps that rotate outward way past normal limits, and tonight something else happened. I felt my knee cap on my left leg slip sort of out of place, just enough to hurt and make it unsteady, but still walkable.

My qyestion, would you count this as a minor sublexation? It seems to fit the criteria for it but im not 100% sure

[grave ember]

Yeah sounds like it could be a patella (kneecap) subluxation. In general subluxation means the joint doesn't fully go out. If it pops out completely, it would be a luxation/dislocation.

[rare sierra]

GG @grave ember, you just advanced to level 8!

[dim perch]

Hi guys. I don’t know if anyone has already brought this up before but I have a little question. Recently my collarbone has been hurting a lot and I wonder if anyone else has experienced this? It aches so bad and it hurts to move my arm, which is very inconvenient since I’m an ambulatory wheelchair user in a manual wheelchair hahah. Do you have any tips or advice regarding what to do in this situation? Thanks 🙏

[novel willow]

This happens to me when I use my crutches sometimes.

[warped flax]

if anyone has canes which handle shape do you like the best

[stuck zephyr]

What does an eds flare-up feel like?

[lucid sundial]

i have a standard one from walgreen’s. if you can afford look into a curved handle (looks like a candy cane) or something more ergonomic because it’ll cause less pain. i also recommend talking to a dr/pt about using one to make sure your using it properly

[stuck zephyr]

Ok this is going to get very specific bear with me, this is going in this chat cause I think I hve the best chance of someone relating
I very frequently feel the need to do what I describe as “||cracking my wrist back into place||” (tw for sounding like a dislocation but it’s not) where when I’m holding my phone at a weird angle or writing a lot, just generally using my wrist it’ll feel kind of “off”? I don’t know how to describe the feeling but it’s just kinda uncomfortable and feel wrong, and then I grab my wrist and press in a certain spot until it clicks and I feel momentary pain and then it feels fine
I’ll send a picture of where I hold it in a second

I just kinda press there while also pressing the other side of my hand in like the direction of the circle

Let me know if anyone wants more of that censored, I’m asking here cause I don’t know what to begin looking up for this

[grave ember]

Could it be a subluxation (so only partial dislocation)?

[weary marsh]

My knees likes to jump right out and then back again. I can really feel it moving and it cracks high. Is it considered a subluxation or a dislocation?

[grave ember]

My guess would be subluxation, but I don't know a lot about it so take this with a huge grain of salt

[stuck zephyr]

I looked around on like reddit for descriptions of subluxations and maybe? Some people were describing it as uncomfortable rather than painful as well

Alin ↩️

[Reply to:](#1146106956621303908 message) Could it be a subluxation (so only partial dislocation)?

[stuck zephyr]

Uh then that's what my ankles have been doing everytime I run cause I like actually fall because it hurts and I can't stand on it for a minute or 2

Raven sys (||BIRDS) ↩️

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

[stuck zephyr]

Yeah… that’s rough

[plucky trout]

Hey, do any of you have tips for things to do for dislocating shoulder ?

[dim perch]

I lowkey need help with this too

My shoulders dislocates daily and I’ve tried braces and tape but nothing helps😭🙏

[tender goblet]

we're thinking about getting back into gymnastics for flexibility, strength, for fun, and to hopefully use it to get back into and better at doing quadrobics too. but we're worried about being fakeclaimed. cause we havent been able to do quads for almost a year now due to bad symptoms, and we wanna post about our progress (cause we're getting a sd by the end of this year hopefully, and wanted to make content with him too)

should we talk to our mom about doing that

[placid salmon]

Hi. I made a thread but go directed here.

I''ve been talking to people and I think I have hEDS. I've done the questionnaire by the "International Contorsium on Ehlers-Danlos Syndromes & Related Disorders" (associated with the Ehlers Danlos Society) and I scored very highly on hypermobility, and had some scoring on the other bit. The person I was with has EDS and is in a wheelchair (let's call her Lucy) because of it, and she suggested definitely seeing my GP about it. So I went to my GP, and she looked at the paper, asked wtf it was, and then told me I had to have some blood tests before I could be referred to rheumatology. Which I heard from Lucy want true. But anyway, I saw the GP 20th May, have the blood test on Thursday, have no idea when the review will be, then probably wait a year for the referral.

Basically, what's everyone's experience and what's any advice?

[amber dock]

I got referred for blood tests before rheumatology to check vitamin D levels. Then got to rheumatology and they were equally unhelpful as they didn’t have any knowledge of EDS. I would recommend sending your GP the guidelines for GP hEDS diagnosis and pursue GP diagnosis with referral to physiotherapy, pain management, orthotics if you need them and wheelchair services if you need one

And always remember you’re entitled to a second opinion. And if your GP practice as a whole aren’t great consider asking around and moving to a better local GP

[placid salmon]

I have yearly blood tests anyway (testing blood count, vitamin d and b12 levels, and a whole lot of stuff) but I got told I needed these tests the afternoon after I had my yearly set done. I was so annoyed because I knew I had to wait so long, but these are ESR and Rheumatoid factor.

I already see pain management because I got diagnosed with fibromyalgia (they haven't been too helpful). I was going to self-refer to physios either today or tomorrow. I like the GP surgery I go to (not only because it is super close to me, but a few of the clinical staff are really nice), but there's just a few doctors that work there that are slightly judgemental which she seemed to be (as if she didn't care about how I felt and how much it's been troubling me). I went to them a few years back about a possible diagnosis, but just got told "no, I'm not going to do that, it's a lame diagnosis"...

[lucid sundial]

you need to see either rheumatology and/or a geneticist. as per the heds diagnostic criteria you need to rule out a.) the 12 other types of EDS b.) other conective tissue disorders and c.) most auto immune disorders

H-EDS diagnostic criteria is strict because of the lack of known gene associated with the disorder. this means all drs have to go off of is your symptoms and how they present. your GP probably can’t help as much as a specialist when it comes to this testing because of the expertise needed to interpret results. i’ll post the link for the diagnostic criteria below. i’m not sure which country your in and how your insurance works but you’ll probably need to find a dr who is familiar with the disorder as opposed to someone with less knowledge.

here is the diagnostic criteria pls keep in mind (everyone) that this should not be used strictly for self diagnosis because of the complexity of H-EDS and the need to rule out other disorders

https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf

[glass echo]

Is there anywhere I can ask about something more hypermobility related than EDS related

Because I sent a message on one of those forums but it’s archived

[placid salmon]

Hi Ky. Thanks for this. I have actually completed this and that's what I showed my GP and she had no clue what it was. I am in the UK so I don't know if I get a choice, or whether it's a "see who comes first" situation

[lucid sundial]

gotcha! i think it’s always best to ask for a dr who’s familiar w connective tissue disorders. never hurts to ask

[grave ember]

Hi, I replied to your message in the other chat

[plucky trout]

I've had doctors refusing to consider a hEDS diagnosis because "it doesn't matter for them" (I could see they didn't value this condition and/or found it "lame" as well). I was so stunned ! 😵 It never ceases to disturb me

[placid salmon]

I'm in so much pain, does anyone have any suggestions of pain management? Currently take gabapentin for neuropain (along with other stuff), and can't take ibuprofen

[amber dock]

Non medication options:

• TENS machine for specific areas (please do your own research on placement of electrodes).
• heat for muscle relaxation. (This can include hot baths, hot water bottles, instant heat packs, heated blankets etc)
• cooling for swelling. (This can include cold showers, ice, instant cool packs etc)
• loads of pillows to get the body into its most comfortable position(s).
• progressive muscle relaxation techniques.
• braces and supports to prevent further pain or keep a body part in a pain limiting position.
• square breathing to get through really intense pain spikes.
• if you are at a consistent pain level above a 7 after using all that’s in your arsenal seek medical attention.
• topical pain management such as tiger balm, deep heat or CBD balm. I find these work best along side massaging the area.
• massage gun for aching or bunched muscles. I recommend not using a massage gun on areas that may be acutely damaged (eg. Subluxed, torn ligament, dislocated etc) as it’s too aggressive.
• if you are not allergic: KT tape on “slippy” or in pain joints can keep them in place and allow them to recover without as much strain. You can sleep in KT tape but usually shouldn’t sleep in other supports

[placid salmon]

Thankyou so much, definitely will try some of these!

[sterile wedge]

I would also reccomend just taking panadol (tylenol) every 6hrs even if you dont feel a massive help from it - because I find that when its consistent for a while it makes everything slightly better and helps other pain relief techniques work better.

[exotic bane]

In the uk the panadol/paracetamol they sell here can be taken up to every 4 hours

[stuck zephyr]

Just read and follow the instructions on whatever painkillers you get. Always!

[half night]

hey i have some questions for yall:
1.) With hEDS are you like constantly in pain? or does it fluctuate on bearable days and then after you do a lot it gets worse??
2.) In hEDS it means you are super flexible and double jointed, but in an instance could your tendons tighten up and make you inflexible in some ways?
2.5) Adding on to the previous question, i want to clarify that I am question hEDS because im hypermobile (like diagnosed by a doctor) but i have to go to pt because my some of my tendons tightened up + some ligaments and muscles weakened (for an example im very flexible in my back so i have little core strength + my knees are hypermobile but my hamstrings are so incredibly tight i cant sit with my legs out??)
3.) can the pain level of hEDS be lower?? i feel like im in constant pain but not like extreme pain (only sometimes) an example of this is my neck, jaw, and shoulder always hurt and its very constant but not often is it super extreme? idk lol

[tender goblet]

currently dx with heds, but our mom is questioning if we have a different type of eds
1- we personally are, but it fluctuates a LOT.
2- yes, definitely. we have to work to keep our flexibilty. since we havent done gymnastics in years we arent as flexible anymore
3- yes, pain highly depends on the person

[lucid sundial]

1. i have a chronic pain disorder so who knows what’s eds and what’s that. most people w eds experience chronic pain tho.

2. heds dose not mean you are flexible it means your hypermobilie. flexibility does not mean you have an increased range of motion. most people w EDS have tight ligaments bc our joints don’t stay in place. our bodies compensate by having tighter tendons and muscle.

3. also being hypermobile ≠ having eds.

4. pain is subjective. pain level is not something quantified for eds. the presence of chronic however is considered in regard to eds

[amber dock]

Recently developed almost lightning like jolting pain down my legs. It only lasts a couple seconds then usually subsides. Does anyone know if this would be to do with my hEDS pain or a new FND Symptom

[warped flax]

sounds like my experience with nerve pain its due to electrolyte imbalance made worse by heds

[amber dock]

Ahh that’s helpful thank you. I’ll make sure to keep an eye on my electrolyte intake when it’s bad

[rare sierra]

GG @amber dock, you just advanced to level 5!

[grave ember]

Oh I have that (or something that sounds similar) too sometimes! It started a few months ago and doesn't happen very often, maybe a few times every other week. And it's weird bc it doesn't start at a joint but more like at the back of my thigh and moving down my leg like lightning. Sometimes it happens when I sit down or move my leg while sitting. And it goes away within seconds but is pretty intense for the first second.
Does that still sound similar to what you (or spoonie pepper) experience? Bc I'm at a loss for what might be happening and if I should be concerned (I always worry when there's a new symptom bc idk if it might get worse)

[amber dock]

That’s very similar to my experience and personally it hasn’t gotten more frequent or severe

[novel willow]

I know Eds is like a spectrum, but I was wondering what some people’s neck pain “looks” like and how they deal with it. I’ll give some context to why I’m asking.

So my neck used to hurt and get stuck until I popped it. I had to put pressure on a certain point to pop my neck so I can move it and not feel pain. Well now I can constantly pop my neck and feels like it’s grinding. It has a weird pop to it as well.
I believe this has lead to my shoulder pains.

I’m planing on bringing it up to a Dr when I can. I’m just wanting temporary solutions to ease the pain

(Please ping when responding)

[misty sleet]

my god this flare feels is the worst I've ever had. Genuinely getting to the "ok might need to go see a doctor" territory.
I have one last assignment due for college before I am completely finished (yaaaay) and other random stuff to do, but I can't focus on it for the life of me because paaain.
I've tried the usual painkillers and a hot bath and just generally laying down but :') yikes

also in the process of switching GPs because my current one told me 2 years ago (when I went to her for help with my HSD) she did the whole "your pain is all in your head" routine and showed me that her elbows could subluxate (my elbows are basically the only non-bendy part of me) and said "see? I'm bendier than you so it can't be that bad" like it was the hypermobile olympics :////

[nova apex]

thats horrible what 😭

[misty sleet]

I know 💀 but yeah safe to say we're switching because wtf was that

but to be fair to her, she referred me to the hospital (can't remember the department lol) who referred me to physio but that was a couple years back and now my pain has spread. Oh how I miss the days where my pain was localised to my legs. Well, I don't, but... y'all get what I mean

[nova apex]

i totally get it lmao

back in the days when i only used to get shoulder pain..............

the shoulder pain was excruciating but my legs werent causing as many issues

[misty sleet]

Oh yeah, felt, but the opposite way around for me. My legs used to me the main culprits and now my shoulders also exist and I am just like heh heh what do I even doooo

[misty sleet]

Well good news! Got a new GP, saw him today, he prescribed me naproxen and booked a blood test appointment for next week

[rare sierra]

GG @misty sleet, you just advanced to level 2!

[misty sleet]

also he wasn't horrible about my pain!!
instead of an "it's in your head, go meditate or something idk" response, I got "aw, sorry to hear, we'll investigate it further, here's pain meds in the mean time, and here's some advice about what you're currently taking"

[amber dock]

That sounds like a massive win I’m so happy for you

[misty sleet]

thank you!! :D

[zenith cave]

Heyy! I’ve got EDS as well unfortunately it’s more on the severe side lol I learnt I had it the hard way when I was learning guitar and my fingers and wrists would pop out lol now my shoulder is out of joint and I have to get surgery soon💀

[fierce saddle]

I'm not sure if that link works but so I put it also in pics and vids, basically the video is about new stuff that is changing for hEDS in 2026, I tried to screen record it but it didn't work

[nova apex]

https://www.instagram.com/reel/DLIrFjiP2Lp/?igsh=MTN5cHZvNjRpOTg1dQ==

Instagram

[novel willow]

Does anyone have anything that can help with opening jars?

I just started struggling with them today

[golden wind]

\ We don’t have EDS but these kinds of jar openers could help?

[hoary ledge]

HELLO

[hoary ledge]

Oh I need that in my life what 😭

[golden wind]

We’re lucky to have some at home :3

[misty sleet]

I first read that as "We're bendy to have some at home" (please excuse me, I am exhausted and foggy brain, yknow) and I was like "well... yes"

My friend reminded me that TADC ep. 5 released, and was all "oh have you seen it yet?" and I was like "oh, yeah, I keep meaning to but every time I open youtube I am either in too much pain to think properly and enjoy the episode or I am seconds away from falling asleep"
I love flares >:( they definitely don't stop me from doing stuff I love >:( live laugh love positive mindset >:(

[tribal coral]

Anyone else doubt that their shoulders actually have sockets?/hj

[tribal coral]

Haha im glad it’s not just me lol

[dim perch]

No but fr, sometimes I feel like my body was given to me as a prank

[placid salmon]

MOOD

[dim perch]

Right😭

[tribal coral]

It’s not funny either 😭

[dim perch]

Ikr

[nova apex]

went to a disability meetup event yesterday and it was really nice :) community really is important!! /vpos

learnt that the hospital im supposed to go to to get assessed hasnt taken anyone in in years. which means i might have to go to another city :[

[novel willow]

Anyone else use a tens unit?
My mom found hers and I’ve been using it sense, I’ve just wondered if anyone else uses one

[fierce saddle]

Yea I use one

[novel willow]

I really need to figure out how to use it on my hips. I’ve got shoulders and knees down

[fierce saddle]

I have a question, why are people with eds called zebras?

[tender goblet]

hmmm

ill ask our mom about that

all ik is that the symbol to represent eds is zebra print :3

[tribal coral]

It comes from the phrase medical professionals are told “when you hear hoof beats, think horses, not zebras.”

But EDS is a rare condition and sometimes it really is zebras

[tender goblet]

that is so silly

[tribal coral]

haha yeah

[balmy lichen]

TW: ||mosquito bite||

So anytime that I get ||bit by a mosquito, ||I always get an allergic reaction or overreaction from my skin. It’ll get to about ||3-4 inches in diameter and inflate.|| I was just curious if anyone else gets this?

[tender goblet]

we do as well, but our mom thinks we have mcas cause we've had other random reactions to stuff too. mcas is comorbid with eds iirc

[balmy lichen]

Ah that could be it as well

[nova apex]

i do too

[untold bane]

So with hEDS one of the traits is constant ingrown nails, is someone (diagnosed if possible) able to confirm? I’m trying to organize information for when I see a rheumatologist
(also, im a bit worried about not being able to be scored on the beighton scale, due to my chronic pain, any insight?)

[novel willow]

Does anyone have any tips for going to a concert?

[tender goblet]

if you have any mobility aids, bring the one you think will help the most. compression socks, any braces if you need to, stay hydrated, take pain meds before if you need to

[tulip coral]

i'm diagnosed with hEDS and i don't get any ingrown nails, i'm not sure if that helps you at all though

[plucky storm]

Hello me!!!

[scenic frost]

I have hEDS and I’m just starting to have problems with ingrown nails. My dr said it was more common with hEDS. Hopefully that helps

[nova apex]

played wheelchair rugby yesterday at a disability event

it was fun!!!

[nova quiver]

Ooooo!! That's so cool I've never heard of that being adapted

[nova apex]

idk if it was actual wheelchair rugby

i think it was more like "holding a rugby ball and sprinting in a wheelchair trying to put the ball in the opposite camp & pass the ball to ur teammates when necessary" /sil

like i dont think we played with all the rules of actual rugby

it mustve been a simplified version of it

[nova quiver]

Still sounds so fun!!

[nova apex]

it was!!!!!!!!!!

[nova quiver]

I know it's so reckless but I love zooming down hills

Fast as fuck boi/ref

[nova apex]

https://tenor.com/view/caffeine-ren-me-when-the-zoomies-bunny-gif-22991327

you fr /sil

[nova quiver]

Yess!!!!

It scared tf outta people in public

They look at me like omg wtf why is he going so fast

Meanwhile I'm just NYOOOM

Just cuz my legs don't work very well doesn't mean I don't wanna show people how fast I can run in my new shoes!/sil

[sterile wedge]

Aha! I do the same thing!! Except once my chair got caught and I fell out really badly (didnt hurt myself much)! But it was certainly embarassing - especially because I was on dayleave from hospital and had to tell them bc I had grazed elbows!! The nurses still wont let me live it down lol!!

[heady shoal]

does anyone have any advice for dealing with constant subluxations?

[languid oak]

I wear braces and kt tape, also trying to avoid activities were i get subluxations

[rare sierra]

GG @languid oak, you just advanced to level 2!

[novel willow]

Genuine question here.

Has anyone worn masks to a concert?
I know people wear them out daily, but I’m going to be around 100s of people. I’m a little nervous with all of the new sicknesses going around

[fierce saddle]

If i go to a concert i always wear a mask- i generally wear a mask if i go anywhere crowded/busy cause my immune system is kinda shot
But if you are concerned abt sickness and stuff and are comfortable wearing a mask 100% do it

[eternal dagger]

Hello

[heady shoal]

sorry i didn't reply to this sooner. i use kt tape but am currently looking around for braces to use cus i am getting slightly allergic to kt tape

any suggestions?

[novel willow]

I don’t wear one at school cause I’m only around certain people i allow myself to be around.
But this concert has been giving me anxiety about sickness

[languid oak]

You can also use hypo allergenic autoadhesive tape if you're allergic to kt tape

I'm sorry i don't understand what you want suggestions about but i'd be happy to help you

[rare sierra]

GG @languid oak, you just advanced to level 3!

[heady shoal]

any particular braces you use that you find particularly good? there's so many braces available and i have no idea which would be good

[languid oak]

I find my hips, wrists and knees braces really usefull
I also love my compression gloves and my AFOs, i literally wear them everyday
I don't like a specific brand, most of my braces were prescribed and custom-made, but I've also tried lots of braces from Amazon and bought several from Pharmacies that work really well too

[heady shoal]

AFOs? for custom ones, how much did you pay? i've heard they can be pretty expensive. haven't heard of hip braces before 👀

[grave ember]

I have knee bandages but I use them mostly for pain reduction/prevention in general, not specifically to prevent subluxations (because I don't get them frequently on my knees).
They work well when I feel "wobbly" tho, although on particularly bad days I have wished I had braces for more support too

[languid oak]

Yes, in general, AFOs (especially custom-made ones) are often expensive, but mine were fully reimbursed ♿✨
Otherwise, if you need AFOs but can't get them reimbursed and don't have a big budget, there are some available for £20 each on amazon

[heady shoal]

what is an afo lol sorry

[heady shoal]

thats super helpful tysm ❤️

[nova apex]

ankle-foot orthotic

basically

[heady shoal]

ahhh

[grave ember]

Oh and I got my bandages from a medical supply store bc I got a prescription from my orthopedist so I only had to pay like half or 1/4th of the price or someting. They look like on the picture (which I'll send after this message), but there are cheaper ones sold at pharmacies or sport stores and stuff.

[kindred silo]

hey, i don’t have eds, but i think i’m hypermobile and i wanted to know if anybody else has problems with their “STT” joint.

[novel willow]

I do a lot, especially when writing, drawing or typing a lot

[kindred silo]

do you have any tricks for keeping it in? or preventing it coming back out?

[novel willow]

I use KTape. I’ll see if I can find a photo demo for it. As I cannot explain it well

[violet zenith]

I'm here~

[turbid shale]

I really need advice on what to do with my shoulders. They keep subluxating and it’s causing a lot of pain especially when picking things up or lifting my arms.

[novel willow]

Same, if you get information let me know please!!

Anyone is free to ping me

[lethal creek]

Doed anyone have any ideas/recommendations or anything for this?

I have most issues in my hands/wrists & hips/legs (generally from my knees and up) and I wanted to ask if anyone knew of or had any ideas for support? It doesn't interfere with my ability to walk much but my hands can absolutely get that bad sometimes (though this might be due to another condition)

Because it doesn't tend to bother my walking much I haven't considered things like crutches or canes etc etc very much but whatever suggestions I'm happy to hear please and thank you ❤️
-# please ping me as well

[tulip meteor]

hereeeee

[icy granite]

not an eds'er but all of my joints dislocate :D (hsd) so i feel ur pain lol

[icy granite]

i like to use compression sleaves/gloves

also try using heat and weighted things with joint pain

like a heating blanket or a warm bath/shower if u can stand

[nova apex]

its a quickie argon 2!

@nova quiver come see /pos /nfta

[pastel sleet]

Hey, I don’t have EDS but have been told I’m hypermobile in my hips and knees. I’m wondering if my toe doing this could mean my toes are also hypermobile. It happens pretty frequently and is painful until I get it back to normal, I had to tape it to stop it last night because it just wouldn’t stay in the right place

Censored because maybe dislocation or smth

[west scroll]

yea that seems like a dislocation.. those are common in both EDS and hyper mobility spectrum disorder (HSD)

[west scroll]

I agree with compression sleeves (like the ones for knees). I have a compression wrist brace, as seen in the picture after this but I'm never wearing it when I actually need it T-T. I'm most definitely wearing it tomorrow when I need to write though because yesterday I had to write a lot in english class and it caused pain to travel through my wrist and up my forearm. Hope this helps!

I really don’t like how it looks though but I don’t want a pink one lol

[pastel sleet]

Cool yeah, I wasn’t sure as it’s always been so quick to go out of place then back in that I hadn’t been able to get a photo until then (it took half an hour or more to go back and I had to tape it to keep it there)

[grave ember]

Spoilered bc you didn't ask for advice directly so you can ignore it if you don't want suggestions or unsolicited advice /genuine
||Because it looks like fabric, it might be possible to dye it another color, especially if you'd prefer a darker color. Idk if dying it could affect the structure of the fabric and therefore affect functionality, so definitely double check before trying it||

[icy granite]

i have black ones and i loves them :D (the silly hands gang)

[west scroll]

I just got a black sleeve yesterday ^^

works better so then I can still wear my watch

[royal loom]

I wrote a rant on FB and someone suggested out of the info I gave that I could be tested for hEDS.

I noticed I have a high narrow palate when I was younger and still do. I also have one hypermobile finger and my ankles/feet have been recommended PT and orthotics after an assessment at the podiatrist for pain. Some boots/shoes give me severe pain. My father also once said I have the same gait as he did when younger, and he has back pain (I also had bouts of back pain).
Maybe if I have it, my brain could be affected too. A few months ago, someone pointed out I struggle with balance with narrow stairs.

I don't really have skin issues or stuff like that but I am autistic and ADHDer, along with mental health stuff. (I know you guys aren't doctors, just stating what I know)

I also have extra teeth and fragile enamel.

And GI issues.

[violet zenith]

Oo :o (I too am of da silly hands gang)

[queen cradle]

im hypermobile in everything except my hands lol, pulled the long straw ig

[queen cradle]

hey im just wondering if anyone has coping strategies for pain flares, i feel like im falling apart rn and the usual strategies areent working 😭

[dim perch]

Hi! What strategies are you using now?

[west scroll]

ginger tea helps with inflammation!! also resting your joints that hurt on a pillow will not only give better cushioning but will also elevate them to help with blood flow. Another thing that helps me when ever my joints become inflamed is compression. I either wear a compression brace or gently massage the area with enough pressure to give me at least some sort of relief

if it’s super bad then I would go for pain killers if you can take them but if you take pain killers too often you can end up building up a tolerance to them so I only take them when the pain is absolutely unbearable

[golden wind]

Can EDS cause pain in the bones other than joints?

[west scroll]

I’ve heard my sibling who also has eds say that their bones hurt but you might want to see if there’s a forum question for that in the eds society website

[golden wind]

Does anyone else’s tailbone subluxate? (I don’t think I have eds but I thought here would be a good spot to ask)

[tender goblet]

can you explain what that means?

[golden wind]

Like partially dislocating

It bends forwards

[tender goblet]

i don't think i do

[nova apex]

i dont think mine does

but i do get tailbone pain

[golden wind]

Yeah I used to just get pain, but now it’ll hurt when I lean forward until i feel it move backwards and then it stops hurting until it pops out again

[tribal coral]

hey guys! I was wondering if any of you have experience with any kind of shoulder stabilisation surgery and how if went/ your opinions on it.

[waxen zinc]

Hi my dear people. I never thought I would say this because I've never thought of myself as a particularly flexible person, but according to my physio and other doctors I may be hypermobile. I've had this thing happening for years where I feel like one of my limbs suddenly goes out of place, as if it weren't properly attached. It hurts and pops and feels as if something were sliding in and out of place. I'm not sure how many points I'd have in the Beighton score because I don't know if my knees/elbows bend backwards enough, and my most flexible joints are my hips. I also have a lot of other systemic problems/commorbidities that I find are common in EDS and HSD, like migraine disease, fibromyalgia, GI issues, dysautonomia, etc. I was just curious if anyone relates to not being sure whether you are hypermobile enough, how you can tell, if these problems sound familiar, and maybe how to get assessed (though I know that varies depending on your country).

[tender goblet]

hypermobile doesnt equal flexible! we've lost our flexibility over the years, so you really gotta work to keep flexibility

[civic fjord]

100% agree. for me, my muscles are really stiff from working overtime to keep my joints in place, so I don't actually read as that flexible anymore (I was a dancer and gymnast in childhood but lost almost all of that during covid)

[tender goblet]

yeah same

[queen cradle]

me too, in fact on the beighton scale i dont get the point for touching toes anymore because my hamstrings are super tight trying to keep my leg together lol

[tender goblet]

we plan to get back into stretching and doing quadrobics regularly, and hopefully get some of our flexibility back once we live in a more stable environment

[waxen zinc]

Ohh thanks for all the responses. Good to know! I'm not sure if I meet all the criteria for hEDS (like family members that I know of, bruising, skin abnormalities besides mild - I think - hyperextensibility) so I was thinking I might have gHSD, which does come with a lot of commorbidities like the ones in EDS, but I really don't know how it's actually diagnosed in practice

[weary bane]

are the yellow whitish dots that appear on my heels when there’s pressure on them the eds foot thing that my doctor asked about? she did a confusing job explaining what it was so i just said i wasn’t sure

[pearl hemlock]

i think they are?

i get those and i have ed's

i'm pretty sure they're on the criteria somewhere

[grave ember]

I used to get them but they disappeared sometime last year after being on HRT for a few months which was very interesting and I'm still not sure if it's causality or just correlation

[placid salmon]

I was finally diagnosed with hEDS last week. Had a flare up of pain ever since. I've been trying heat pads but has anyone got any suggestions? I dont really want to tell my work that it affects me so I'm trying to find out ways to cope instead

[nova apex]

piezogenic papules ?

[weary bane]

ah yes that’s what it’s called

is that what that is? my doctor was very confusing in how she described it

[nova apex]

sounds like what mine look like yeah

[obtuse rune]

I find that alternating heating pads with soft ice packs helps.

Aaaaalso sometimes I just dislocate whatever joint is fucking me up and then put it back manually (turning it off and on again) but that solution is a bit more violent.

[lethal creek]

I know it's been a bit and I don't have much advice for the pain flares to be honest because I'm trying to figure that out myself. However I would like to say I really recommend that the workplace be aware if it affects you/your performance. Lots of places will be willing to work with you and when you have that understanding in the workplace it makes it much less taxing, even if only mentally.

It's better to try and have a support system at work than to force yourself to suffer through it with absolutey no understanding from coworkers. I'm not sure how the laws are in your country but if you need reassurance if you feel like you won't be accomodated or if you're worried about getting fired/discrimated against you can also look into the laws regarding employees in your area. In EU however iirc firing an employee just because they are disabled is discriminatory and is illegal.

The place I work for example is super willing to accommodate and I've learned over time that a lot of places again are willing to! You just have to approach the subject and be straight with them about it, but you also don't have to explain beyond what's necessary.

I mean that as in you don't need to give them every little detail or full explanations but the ones that are important to have atleast the framework be understood. "Hey I have a condition and need xyz" without giving them full details and being like "Hey, I have EDS and need xyz" if you're not comfortable sharing the details. It's your legal right to keep detailed information private but it is also helpful to be transparent in SOME aspects of it in the workplace.

Basically I'm just saying it's worth speaking up about to some degree because accommodations are really helpful and it definitely doesn't help to overexert yourself when you could find a way to handle it well.

I tried to explain that as well as I could but if it comes off confusing I'll try to reword it. It's super late and I did my best lol

[placid salmon]

Thankyou so much for your input @lethal creek I currently for for the NHS, so have had a few occupational health checks because of eve we trying. I already have a lot of things in place because of other health conditions (primary effects being epilepsy & fnd). I feel like adding any more would make it more difficult for me to work. I'm trying my best. Some people know. I asked occupational health if I needed to tell anyone if it didnt affect my work and they said no, so I sort of want to keep it quiet, but also want to tell people just so they know, but also dont want to tell them because I dont want them to treat me any more differently than they already do... I'm in such a pickle at the moment 😮‍💨

[scenic frost]

Hi, I’m currently experiencing hair loss (in my 20’s), and I wondered if it was related to my hEDS or if anyone else had this problem. If you have any advice or knowledge about this, I would appreciate it

[waxen zinc]

My hair does fall out A LOT. I'm also in my (early) 20s. Though I'm sure I'm hypermobile and have a lot of other related health issues, I haven't been diagnosed with EDS or HSD yet

[civic fjord]

I have really thick hair but recently I've also noticed way more comes out in the shower than it used to. rn I'm the most worried about it being malnutrition from possible gastroparesis even though my weight is maintaining pretty well, so we're working through that in therapy

[sterile wedge]

I have noticed that - my hair loss and nail loss is caused by medicaiton side effects - its quite a common side effect so maybe check! Also there are different types of hair loss. If it is diffuse thinning and kind of just feeling loose on your head that is called tellegen effluvium. Basically your hair is activating its natural shedding all the time rather than just cyclical. This often happens in a 2-6 month delay from the inciting incident. For example, if you had malnutrition, a medication with hairloss as a side effect or an infection or really just any stress on the body it may show up much later

[scenic frost]

I hope you get some clarity about your nutrition

[rare sierra]

GG @scenic frost, you just advanced to level 1!

[scenic frost]

Thanks that really helpful

[warped flax]

my doctor also told me that (just like all my other issues) it could be the change in seasons

[queen cradle]

does anyone else with eds get bad heat rash easily?

[tender goblet]

yeah, our skin reacts to warm/hot water (showering) and sweating because of mcas

[waxen zinc]

I've heard that is a symptom for a lot of people, yes.

I'm still in the process of discovering my hypermobility and the issues that come with it (not sure if it's EDS or HSD). I'm having a lot of trouble with my hands. On random days they just hurt a lot, I feel like I can't move them properly, and they also feel kinda weak. I wanted to know if this is common in connective tissue disorders, if this experience sounds similar to anyone else's (it'd be great to hear about other's experiences with this) and if anyone has any tips for this

[balmy lichen]

Does anyone else’s hips get really bad nerve pain? Feels like it’s dislocated, but it’s not. It is such bad pain. If you do get this, does anything help you?

[low badge]

I have spoiled a couple photos of my joint hypermobility.

I am not diagnosed. But I am seeking testing because, I do score a 9/9 on the Beighton Scoring System. I also have MCAS, Degenerative Disc Disease, Myalgia in my legs (knees, hips and ankles especially), I also have sprained my ankles multiple times, had the same shoulder sublux twice, Radiculopathy, and Carpal Tunnel Syndrome, among a plethora of other things. I have the dots in my feet, blue in my sclera, soft velvety skin, unusual scarring, chronic fatigue as well as gastro issues and my heart rate spikes randomly. I am adopted so I do not know much about my family history. I have a referral but I will just have to wait and see!

[placid elbow]

So I dunno if this counts or not but I'm wondering if I have hEDS I spoiled it just in case it bothers anyone

[lethal creek]

does anyone have any good compression glove brands or anything. help

[rare sierra]

GG @lethal creek, you just advanced to level 8!

[queen cradle]

i need tips for dealing with cranial instability, ive had it bad for the past 4-5 years and am super fed up at this point

[placid elbow]

Question! Can EDS show up on ||blood tests||?

[tender goblet]

yes, most types of eds have genetic markers! i think not heds though

iirc

[placid elbow]

Good! Because I got drawn today for tests like pots, thyroid idk if eds will pop up but hopefully!

[tender goblet]

it depends on the type you have

[placid elbow]

If you scroll up I put pictures of why I think I have it

[tender goblet]

there's other tests for heds tho

[placid elbow]

Right here

[tender goblet]

yeah i saw

[placid elbow]

Alr

Also, love your pfp

[tender goblet]

thank you

my mom took this picture

she is a nurse and she researches eds (and other things) a lot. and I'm pretty sure heds doesn't have known genetic markers yet

but all the other types do

[placid elbow]

Alr

Well, we shall see and hope

I was laughing my butt off a few days ago because I went to a chiro for the first time and he tried to hyper extent my knee to check for pain because I have knee problems and I just nodded because it was NO WHERE NEAR hyperextended

[tender goblet]

eds is so interesting tho

we are currently diagnosed w heds but my mom thinks we might have a different type

[civic fjord]

no, EDS won't show up on ||blood draws||. only genetic exams (and hEDS currently doesn't have a genetic marker) which usually involve giving saliva

[tender goblet]

^^

[brittle pond]

same question, i need some ideas for joint pain

[waxen zinc]

Anyone else feel like their joint pain gets worse during their period? I'm finding that when it comes my joints get a lot more rigid and unstable and it hurts

[tender goblet]

yeah 100%

[civic fjord]

bibipins is great. only complaint is that the gloves go all the way up to the DIP joint so you don't get as much dexterity

[brittle pond]

yep, massive flare ups

[pearl hemlock]

your connective tissue gets weaker during your cycle i think? cause i also get much worse during mine

[waxen zinc]

Thanks for all the responses! It actually makes a lot of sense, especially if it happens to a lot of people. Right now it kinda feels as if I were made out of sticks 😅 all of my joints are tight and unstable and I have a headache that I'm pretty sure is also hypermobility related.

What do you find helpful in supporting unstable and painful joints?

[grave ember]

I have knee bandages that help a bit when my knees feel wobbly

I also have a wrist bandage but that one is a bit ambivalent, some times it helps, sometimes I feel like it might make it worse

[nova apex]

depends on the joint tbh

i mostly use braces and compression

[queen cradle]

tw: injury
when you have eds and roll your ankle 💀

[grave ember]

Ouch that looks painful! Rolled ankles suck

I once rolled my ankle while walking down stairs
I was so lucky it happened on the last step bc otherwise I would've fallen down the rest of the stairs, that was pretty scary

[queen cradle]

i have unfortunately had a similar experince with the stairs, fortunately even though it happened mid-staircase i managed to not fall down them (the stairs were also rather small lol)

[west scroll]

literally the story of my relationship with soccer T-T

[civic fjord]

once when I was in elementary school (primary school for you brits), I rolled my ankle in the schoolyard just while walking. went to tell a teacher because it was actually fairly painful and she just goes “oh, that happens to people sometimes. just walk it off”. luckily that specific time I was fine and if anything was subluxed it went back in on its own. but ik that could’ve gone pretty differently

[west scroll]

yea the first time my ankle started to give me issues was during soccer practice. The grass hadn’t grown in the area in front of the goal so I was basically running in dirt in cleats. When I went to go run back in line my ankle pinched a nerve or something and it hurt for a few days after that so my mom went ahead and got me a brace cause when I would run it would start hurting again. later during the next season is when my ankle actually rolled and then my other ankle had started to do the same thing.

whenever my legs start to get tired as well my ankles will start flopping over which isn’t fun

[civic fjord]

oh yeah same. when I get up in the morning my knees are like jello

[queen cradle]

unfortunately i feel like thats a commonplace here in the us, when i just injured my ankle i went to the medical tent and they literally would not give me an ace bandage, let alone crutches so i had to hop around the center for the rest of the day (since my foot will not bear my weight)…

people are odd

[lethal creek]

anyone else's k tape genuinely be giving them a free wax

[queen cradle]

yes lmaooo

[pearl hemlock]

good lord it hurts so bad lmao

[west scroll]

I’ve gotten so used to it in some spots that it doesn’t even hurt anymore lol

also my knee is stupidly inflamed

like really bad

and I can’t sleep well because of it

[pearl hemlock]

i just had surgery on my knee where i have to tape and my dominant arm doesn't move anymore so i haven't been able to shave so it's significantly worse than my usual kt tape routine rn lmao

[lost ocean]

i cant find any other one! if anyone struggles with HSD or EDS do you have any useful websites or resources that helped you? i’m really struggling with my symptoms atm and all i can have is the Ehlers Danlos Society profile

[west scroll]

Ik that they have a fb page and there’s a big community there and on reddit

not sure about any other community though

[queen cradle]

the eds society really helped me, but u can also find local independent support groups through their website! i don’t exactly remember how, just try and poke around and see if you can find it, then search by location!

[grave ember]

Depending on what exactly you want resources for, I found Jeannie di Bons videos on YouTube helpful for physical therapy and gentle exercises that help with or prevent joint and muscle pain, subluxation etc related to hypermobility

[lost ocean]

thank you!!

whilst i remember has anyone found sports tape useful for support? ( think it’s also called k tape but i know it as sports tape lol )

[dim perch]

I definitely have but unfortunately my skin doesn’t approve lol. Even if I use the one for sensitive skin, it still irritates my skin quite a lot. Sometimes I just don’t care and use it anyway because it’s worth it since it helps a lot with stability. Sometimes it’s awful tho, it gives me blisters and when I peel it off my skin usually comes off as well💀

[queen cradle]

if you do end up buying kt tape, buy the cotton one. the other ones trigger my adhesive allergy and are extra paniful and hard to get off (kt pro, extreme, etc) and if you can find the sensitive one anywhere it’s good for taping joints you dont move often, though if you use it to tape your shoulder it comes off pretty fast

[lost ocean]

thank you!!

[dim perch]

No problem! I use it mainly on my shoulders and knees since they are very unstable and personally I think it helps cause then I don’t have to constantly think about keeping them in place. (That takes a tremendous amount on energy lol)

[brittle pond]

hey, very much need suggestions