Ehlers Danlos Syndrome (EDS)

[nova apex]

they look like they would, but im glad if they dont

[opal charm]

I don't notice mainly cuz I have no feeling in my hands anyway 😅

[nova apex]

ah okay, i have questions to ask about that but im not gonna ask them right now /lh

[opal charm]

No worries, needs be, just DM. I'm open to answer any questions lol

[opal charm]

I'm happy for you Dax!!

Thank youuuuuy

[violet zenith]

anyone else's hips crunch???

and click so much you see them physically shift????

[opal charm]

YES

[pure tendon]

Can you have EDS without dislocations?

[violet zenith]

yes i'm fairly certain you can

[pure tendon]

Oh okay got it, thank you! I’m wondering if it’s something I should look into

[rare sierra]

GG @pure tendon, you just advanced to level 3!

[violet zenith]

look up the symptoms and if you have more than 5(?) i think it's worth a look into

me, my aunt and 2 of my sisters have it

[pure tendon]

Okay thank you!

[surreal brook]

This has been happening a concerning amount with me lately

[opal charm]

Does anyone else have it where they aren't overly flexible in general but some small joints are overly flexible?

[opal charm]

My joints love to crack lots but they never pop out of place though I do see some of them shift a little

[west scroll]

hey does anyone have any good brands for compression type knee sleeves

I need compression on my knee to help with inflammation the most and I don’t have something that can put constant pressure on my knee

this is mainly a question for people in america and if it could be one from walgreens and cheap that would be great

or cvs

I think I found one actually.. just need it in a smaller size

[pastel sleet]

Not EDS related, but hypermobility related, so I know you guys can help.

I just got out of bed and I think I may have moved my hip slightly wrong and then I experienced pre-syncope from the pain. Is there any way I can avoid this from happening?

I have a physio appt on Monday and I know that doing my physio would help, but I can’t do my physio because I went too long without doing it and now I collapse when I try to.

[dense wren]

Huh, Not sure, but I have pots and get presyncope when I sit up/stand/rise from bending.

[nova apex]

definitely take it easy with the physio but try to stay consistant (you can make a reward system to motivate yourself) ! stretches are also always good but ask your physio the amount of stretches you can do. and if it hurts, dont force it.
you might also want to set some specific ways to do certain movements to avoid injuries. like for example, to get out of bed, i lie on my side, then get my legs out of the bed and it balances me and helps get my upper body up, then i wait for a bit, then i get up.
is that kind of wrong move then big pain reoccuring ? if yes, you might want to try to catch the movements that hurt and try avoiding them !
(for the specific ways to do movements and avoiding somes, it might feel weird at first to try and pay attention, but eventually it will become automatic :])
and for the pre-syncope, definitely try to get down when it happens. get as close to the floor as u can. and take your time to recover afterwards. its ok if you still feel out of it or if you cant get up very quickly !
youve got this be careful /lh

[half night]

my suggestion is to take the physio stretches and make them, easier to build stregnth back up (so if its push-ups do plank hold or pushups on a wall or surface) i completley understand the pain. i usually do workouts from k-pop idols (like Jung Kook) and whenever i get hurt again or have a flareup and i have to stop the workout for a few days, its always really tough to build my strength again

[west scroll]

wait I just looked up what pre syncope thing I didn't know there was a word for that happening it used to sometimes happen but it has started happening for me a lot more often

[dense wren]

May want to look into POTS or Postural Orthostatic Tachycardia Syndrome.

As well as other related disordered like orthostatic intolerance etc

[west scroll]

yea Ik I probably have it

the thing is I’m not too worried about it rn since I haven’t actually fainted

but I’m being careful

[dense wren]

Presyncope exists

We have bad presyncope

[west scroll]

yea ik it exists but since mine isn't bad to the point that it affects my daily life I'm not too worried

[dense wren]

Well its not normal to have them, they can get worse. /info

A good tip is drink gatorades and increase your salt intake a bit

It'll help the symptoms

[west scroll]

alr

also I’m at the chiropractor and everytime I would get told to drop my shoulders my arms would just fly off the tables

that’s not what she was telling me to do at all but I can’t tell what my shoulders are doing because my brain wasn’t sending me the right signals

[west scroll]

anyone else’s ankles doing this rn

it’s not dead but it makes me want to cut my ankle off

[dense wren]

Somewhat they tend to do that.

[west scroll]

I got a weighted dino ^^

I did flappy hands all the way down stairs and to the door

[spring swan]

OMG That's so cuteeee! Btw I love your style & your hair! You look super duper cool :3 /gen /vpos

[west scroll]

thanks!!

[west scroll]

so I slept weird in the car and I think I pulled something in my back and so now when I play violin it starts hurting a lot and makes it hard to actually play T-T

[half night]

awww poor you

i got my ||flu shot|| so i cant play rn

[west scroll]

oof

[west scroll]

I got a pull up bar finally

[unborn karma]

How do you loosen your joints when they get stiff? Like when I get cold at all, all my joints lock up, click and are painful. I don't really now how to solve that 😅

[west scroll]

you stretch very carefully, take a warm bath to help your muscles unfreeze with some epson salt to help with pain, elevate, advil, compression

[west scroll]

hope this helps (I forgot to ping you so you see this in time)

[opal charm]

Can limbs freeze by hyperextending them? Like is that an EDS thing or a normal thing?

We get that often and our joint bones love to crack and wobble.

[half night]

y'all im taking the polar plunge tommorow wish me luck o7

im gonna be so cold T-T

[opal charm]

Good luck!

[pastel sleet]

What would it feel like if your hip was subluxed/dislocated?

[novel wyvern]

It can feel different to the individual. I have slight subluxations with my hips and I feel it isn’t even to the other hip (usually more forward for me) and it also feels sore or worse depends how much it slips and for how long it’s not been in place. But I can still walk a little bit on it, I just lip a lot more than usual

[dusky orbit]

Mine usually slides right back in, but putting pressure on it feels horrible when it’s subluxed

[novel wyvern]

Hyperextending the joint is a problem with hypermobility/ hEDS. When the joint is overstretched it can cause the muscles to seize/lock; this is a normal response to overstretching the joint but being able to overstretch easily is a hypermobility issue.

[rare sierra]

GG @novel wyvern, you just advanced to level 2!

[dusky orbit]

It’s a problem with classical EDS as well ^^

[novel wyvern]

Yeah it’s a problem with most types I believe but I put hEDS since that’s the type I have

[dusky orbit]

Right right

It’s also the most common

(Sorry I’m sure you already know that)

[violet zenith]

other people with EDS: how would you describe your joint pain? i'm curious to see if it's different for everyone

[dusky orbit]

I usually describe mine as my bones grinding together if that makes since?

Depends on the severity though

[novel wyvern]

Depends where it is for me

[violet zenith]

cw: graphic: i describe mine as ||someone trying to rip my joints out from my body||

[novel wyvern]

Yeah I get that a lot

[violet zenith]

but i also get shooting pains in my hips and knees

[dusky orbit]

Yeah I know what you mean

[violet zenith]

they also kinda feel like they're hot and on fire???

i hope i'm making sense

[novel wyvern]

Yeah I get that

Bone grinding sensation, on fire sensation, ||needle/knife (stabbing)|| sensation and throbbing sensation are my main ones

[violet zenith]

yes the throbbing omg

[novel wyvern]

I have a lot of friends that don’t understand so I’m glad that some people get what I mean with types of pain and everything, it’s hard to find people that get it, if that makes sense

[violet zenith]

yeah it's hard to describe to people who don't understand

especially the scale of the pain too

[novel wyvern]

Yeah if I tell my friends that I can’t talk or do something because I’m in to much pain they think that I won’t show up to places like college the next day but it changes most of the time after sleeping I find

I also find it hard talking to adults and most doctors about it too

[violet zenith]

yeah sleeping helps a lot with pain

[novel wyvern]

Once the pain is calm enough to sleep anyway

But yeah it really does help

I have functional dystonia with my EDS so it’s a lot harder to sleep when I have pain

[pastel sleet]

Alright. I doubt my hip is subluxed or dislocated, but it has been in pain on and off since the 11th December. And constant pain since last week. I’m seeing my physio tomorrow so I’ll talk to her and see. I don’t have EDS, but my hips are hypermobile.

[novel wyvern]

Yeah I would definitely talk about it with your physio about it and get their opinion and advice about it

[tardy fractal]

I feel like a cross between a rusty door hinge and a bunch of popsicle sticks being held together by duct tape and hope

[violet zenith]

actually so accurate

[pastel sleet]

Yeah. I took 2 ibuprofen an hour ago and the pain is still almost unbearable 😭

[novel wyvern]

Can you take paracetamol because that’s what I do when two ibuprofen don’t help

[pastel sleet]

I can in 30 minutes. But I’ve also tried paracetamol before for my hip and it didn’t help. :(

[novel wyvern]

Yeah I get what you mean, I have a problem with pain meds because I have taken so many over the years so now some don’t work e.g. ibuprofen but my doctors have me on a regular schedule so my pain doesn’t get to bad

[stone berry]

Oh mood

[novel wyvern]

If you need to talk you can just message me

[rare sierra]

GG @novel wyvern, you just advanced to level 3!

[stone berry]

Like my joints are being held together by silly bands that make popping noises occasionally

Silly bands that collapse very very easily

[pastel sleet]

It’s not because I’ve had too many pain meds. I think it’s just the type/intensity of the pain

[novel wyvern]

Sorry I didn’t word that well, I have a problem with words messaging, especially when I try and explain things, pain doesn’t help the problem

I was trying to say that the meds might not be working as well for the type of pain and amount that you are experiencing at the moment

[pastel sleet]

Alright!
It’s fine. I think it’s both of us, I can’t interpret stuff, and you can’t say stuff = info not going through 😅

[novel wyvern]

Yeah

I usually have to go on call with friends and family to explain things to them because talking is easier than most ways to communicate for me

[pastel sleet]

Yeah

[pastel sleet]

Can people have the EDS gene and not experience problems because of it?
I believe EDS is a dominant gene, so if you have the gene, you have EDS and can’t just be a carrier, but is someone able to not experience any problems despite having the gene?

[novel wyvern]

EDS is usually a dominant gene, I believe (depending on type). If one parent has it there is a 50/50 percent chance that they pass it on to there child, but if both parents have it there is a 75% chance that there child will get it. But this depends on the type of EDS as well

Depending on age, lifestyle and if there has been trauma to the body. Subluxations and dislocations are a common symptom but sometimes people with EDS don’t experience them (I know that sounds weird but I have a family member who is like it), hope all that makes sense

[pastel sleet]

Thanks!
I’m thinking if I do have it, because there is a chance as my Aunt has it, then it’ll have come from my mum and my mum doesn’t actually experience any problems.
Also, are toes able to be hypermobile? I believe mine may be as I point them slightly and my big toe will dislocate, and then I step on it and it goes back to normal

[novel wyvern]

Yes toes can definitely be hypermobile, mine dislocate and then go back all the time

[pastel sleet]

Thanks

[novel wyvern]

Np

[pastel sleet]

Less than 24hrs until my hip problems may or may not have an answer (besides them being hypermobile)

However, if I can’t do long walks, I’m doomed. I payed to do silver DofE in September 😅

[novel wyvern]

Yeah I have been trying to build up so I can do my bronze DofE

[pastel sleet]

Yeah. I’ll probably have to do that. I didn’t do Bronze either, so haven’t done the ‘warm up’ to silver

[novel wyvern]

Yeah the college that I go to have been working with me and my parents to make it so I can complete mine because of how my EDS affects my physical health

[pastel sleet]

Nice

[rare sierra]

GG @pastel sleet, you just advanced to level 11!

[pastel sleet]

I asked my dad for painkillers and he gave me a singular tablet 😅
Two tablets barely work, so I’m scared to think how one will.

[west scroll]

my hip and knee is killing me

I just had to walk up a hill and I immediately started hurting because of the cold

[half night]

aghh

after i took a dip in the ocean i was attempting to walk and i could not put one foot in front of the other

and my muscles have given up on me rn

[west scroll]

lol one time I was swimming in the ocean with my mom and we got separated but then after we got back on shore I could barely walk

[half night]

real

[west scroll]

it doesn’t help that I was slighting breaking down in the middle of the ocean on a boogie board

[half night]

oh no!

i feel like thatd be me lol

[west scroll]

lol

I need to get up and eat breakfast but I’m stuck in my bed cause I’m cold and wearing a T-shirt

maybe this is why I make a pole of clothes on my bed and not take care of it…

[west scroll]

I finally got out of bed and ate 😤

[unborn karma]

Is it possible to have it if neither parent has it (or at least isn't diagnosed with it, my mum has issues with her joints but that might be something completely separate, and my grandad has rheumatoid arthritis in both knees)?

[novel wyvern]

It’s possible to have it and nobody in your family has been diagnosed with it. Nobody in my family knew until my main doctor noticed it (he had treated people with it before). I was extremely hypermobile and my parents both had similar issues but my mom got worse and that’s when everyone found out that my family has EDS.

If I remember properly arthritis can be connected to EDS in some cases but it’s rare, but joint problems can also be caused by EDS

It is possible for someone to have it and neither parent have it (gene mutation), sorry if any of that is confusing I just had an episode so my brain isn’t thinking properly

[west scroll]

arthritis is a symptom of eds (I'm pretty sure I might have a little bit of arthritis because my joints get super achy at night sometimes if I don't go to bed on time which is a symptom of some types of arthritis I'm pretty sure) but it could also be from anything. you just have to get the specifications from them

[near kindle]

My neuro wants to send me to a geneticist for testing bc I’m hypermobile with joint pain accompanied by cracking and popping, dizziness, etc and it lowkey is kinda scary. It is kinda my last resort to figuring out what’s wrong

[dense wren]

I have all that except chronic joint pain. My limbs to kinda freeze in place though, both my ankles and knees.

I'm questioning EDS but I don't meet a lot of the criteria, I do for Hypermobile Spectrum Disorder but my joints and limbs don't pop out of place as well as I don't have other issues that EDS people suffer with. Just the legs getting moments of stiffness where it hurts to move them even a little. And getting 5/9 on the beighton score.

[unborn karma]

Mine don't pop out of place that I can tell, my joints just pop in general, I get really stiff and have chronic fatigue and joint pain. Although EDS is sort of a spectrum in itself, a lot of people have some but not all of the symptoms, others have all of them.

[west scroll]

yea I’m very thankful for not having gastroperesis which I think is common for people with EDS to have but that doesn’t mean that if you don’t have it that you don’t have EDS

idk I just woke up so my facts on everything might be a bit wrong

I’ll look it up though

[nova apex]

GI issues are a comorbidity yes

[west scroll]

ok yea that’s what I thought

also I keep getting shot with random light headedness for about 1 second when walking around I think I might just be dehydrated but that has never happened when I’m dehydrated

[nova apex]

dysautonomia also is a comorbidity /info

[west scroll]

what is that

oooh that’s the other fainting disorder thing that I keep hearing about except they faint a lot quicker isn’t it?

[west scroll]

ooh it’s a whole umbrella

why is there one called inappropriate sinus tachycardia

ooh ok yea that name fits

[dense wren]

Yeah, maybe I have EDS then, just not all the symptoms but I'll try and work for a diagnosis first

[tardy fractal]

Guys I finally made ring splints and omg 💀

Before and after (cw for the first one, finger bending back too far, just in fase someone needs it)

[opal charm]

wait fingers aren't supposed to bend that far? Our pointers are the only ones that do it.

Charlie!! <3 [He/Any Neos] ↩️

[Reply to:](#1146106956621303908 message) Before and after (cw for the first one, finger bending back too far, just in fase someone needs it) 📎

[tardy fractal]

All of our fingers bend back that far, but no, not really-
The tips usually bend back a tiny bit, but definitely not that much on a normal person
That much bend is not normal for either joint lmao

[opal charm]

Hm, interesting.

[west scroll]

hyper mobility

[opal charm]

Yep. HSD be like.

Keisuke💙🖤 ↩️

[Reply to:](#1146106956621303908 message) hyper mobility

[near kindle]

I get evaluated for EDS in March and I’m a bit nervy

[opal charm]

Wish you the best of luck!

[nova apex]

ayy hope it goes well and hope u get answers. i have an appt in april ‼️

[stone berry]

Yeah, all of my fingers do that, too. I'm looking into ring splints as well

[tardy fractal]

Don't buy them, trust

Wire is cheeper and homemade splints work so much better

Just make sure it is wire that bends but not super easily, they are so easy to make

[opal charm]

How can you tell if you dislocate a shoulder?

[opal charm]

Apparently I didn't just have a pinched nerve but had also dislocated my arm a bit. Took me long enough to fix it.

[opal charm]

Or rather a subluxation. Which I don't think has ever happened. I know shouldn't have fixed it on my own.

[surreal brook]

I’m curious, do you guys have any tips for when your chronic pain flares up when you are sick?

[half night]

bit hard to explain because ive only done it once but its REALLY painful while the joint is still dislocated and it looks off. i dislocate my hip a lot and you can see whe

oop-

hold on a sec

sent that when i didnt mean to

[half night]

bit hard to explain because ive only done it once but its REALLY painful while the joint is still dislocated and it looks off. i dislocate my hip a lot and you can see where the bone is out of place (it looks off) i assume a dislocated shoulder would look wonky too.

[opal charm]

We ad our shoulder feel really off and was in loads of pain that Myoflex cream and massaging wouldn't help. Then we tried to crack it back into place and heard a pop and the pain stopped. Our arm felt different after and now its incredibly sore.

So we have no idea what it was or anything but it sounds similar to subluxation.

nona ✿ ♡ ↩️

[Reply to:](#1146106956621303908 message) bit hard to explain because ive only done it once but its REALLY painful while the joint is still di…

[opal charm]

Took some advil and rubbed some Myoflex on it, still hurts after like 2 hours of both being kicked in.

[west scroll]

yea normally a dislocated shoulder looks like your shoulder is off and you won’t be able to move your arm freely with a dislocated shoulder without being in a lot of pain

[half night]

ah ok!

ive only done it once so im not too familiar

[west scroll]

yea I haven’t dislocated my shoulder before besides when I didn’t have a conscious memory (I think it has subluxed but not sure) but normally if you dislocate a shoulder it can easily pop back out of place if not careful

[opal charm]

I was able to move my arm but it felt and looked off and was in a lot of pain.

Keisuke💙🖤 ↩️

[Reply to:](#1146106956621303908 message) yea normally a dislocated shoulder looks like your shoulder is off and you won’t be able to move you…

It hurt to either move it or not move it

[west scroll]

yea you can still move it but it’ll hurt a lot more than when not moving it

over all it will hurt the whole time

[opal charm]

Yeah.It's still sore but not what it was thats for sure.

[west scroll]

yea it’ll definitely be sore

I suggest icing it or taking a bath with some epson salt cause a dislocation can cause swelling and inflammation in the area

[opal charm]

Definitely will do that. Prob gonna use a heating pack.

[west scroll]

👍🏻

[opal charm]

I somewhat recall this happening to this shoulder occasionally but thought nothing of it cause it'd only happen once every few years, not sure why though.

[west scroll]

if it does happen again make sure to get it back in place as soon as possible or the swelling or fluids will cause it to be hard to get your shoulder back into it’s socket

[west scroll]

do you sleep on your side?

and are you hypermobile

[opal charm]

I slept on my back the whole time before this happened, yes, mildly. Beighton score wise.

[west scroll]

hmm ok

what were you doing before you felt the pain

[opal charm]

Asleep, as far as I know, woke up one morning with my shoulder blade in pain, then it spread to the shoulder and stayed in between the shoulder and elbow. But everything felt crooked on the right shoulder, I only recall sleeping on my left side and back like usual.

I was able to crack it into place after 5 days of the pain.

[west scroll]

you might’ve rolled in your sleep

[opal charm]

Yeah, maybe.

[west scroll]

sometimes I go from one side, onto my stomach, and then to the other side and sometimes end up feeling my shoulder being tugged on a bit

[opal charm]

Yeah.
Massaging, and any pain meds did and still do nothing to calm the pain. Though its now just sore and not like a burning/shocky pain. Felt like the ball of my shoulder was more downwards from the top of my shoulder.

Even tried a hot bath which wasn't too helpful but helped a bit.

[west scroll]

yea sometimes pain meds don’t really help

and massaging can sometimes help but it can also make it feel more irritated

[opal charm]

Yeah, if anything it loosened it up a bit so I could pop it back into place.

[west scroll]

the best thing to do is to rest your shoulder and make sure not to do too much with it for a bit

[west scroll]

yea it helped with the swelling

[opal charm]

Yeah, did a lil makeshift sling and have been stretching the arm every so often.

[west scroll]

I suggest getting a shoulder brace and seeing if that might help support it more and help with the pain

[west scroll]

that’s good

[opal charm]

Yeah, only issue is money atm but its a definite goal.

[west scroll]

definitely look into some light and gentle shoulder stretches

[west scroll]

ah ok

braces that are generic pharmacy branded are sometimes cheaper if that helps

it’s not as good of quality but it does it’s job

also strengthening your shoulder up with some light exercises would be good as well since it makes your muscles support your shoulders better

like an internal shoulder brace

[opal charm]

I'll see if I can get a brace for our arm by our mom. But until we get a job, probably can't.

Oo do you have any helpful stretch video's that would help?

[west scroll]

I understand just try to rest your shoulder as much as possible

[west scroll]

not really

I only know two shoulder stretches but they’re not really light stretching

definitely if you do them wrong

[opal charm]

Yeah, been doing arm raises and shoulder circles. And the stretch behind the head and across the body.

The last 2 prob aren't good

[west scroll]

yea the stretch behind the head one and the across the body are the two that Ik

I didn’t know this until recently but I was doing the one behind the head wrong T-T

you press your elbow against your hand

you don’t pull your elbow

I didn’t know that lol

[opal charm]

One behind the head is how I fixed the shoulder

[west scroll]

yea if you pull your elbow it can pop it back into place

[opal charm]

Oh. Damn. I've definitley been doing that one wrong then

[west scroll]

but the stretch is pushing your elbow against your hand

[west scroll]

no one told me except a video for kpop dancing basics 😭😭

[opal charm]

Ohh I see. oh lmao. It works.

[west scroll]

yea

it feels really weird to stretch my shoulder like that lol

it kind of stretches both shoulders

[opal charm]

Also weird question do your bones have painless cracking a lot?

[west scroll]

yes

my wrists and knees do

it’s normal

well for people with joint issues that is

[opal charm]

Cause My knee's and arms do it a lot. Not my fingers though which is weird.

[west scroll]

yea that’s normal

it’s just small little bubble popping between your joints

[opal charm]

Just sometimes with the cracks I feel moderate shifts in that joint.
I suspect HSD but with me being reminded of arm popping out of place maybe.

[west scroll]

yea I feel my joints moving around a bit when I pop my knees but it’s not enough to dislocate

[opal charm]

Which is a relief. 🙂
Dislocations are hard.

[west scroll]

yea

[opal charm]

Even if rarely occurring.

[west scroll]

yea

I have to go to bed but I wish you the best of luck with your shoulder

gn

[opal charm]

Thank you for helping though. Helps a lot!

[west scroll]

yea no problem

[opal charm]

Thank you, hopefully it won't have to rest for too long.

[half night]

oh yeah i forgot, if you have access to ibuprofen (advil) you should take some with a dislocation. it helps reduce swelling and relieves pain temporarily so it helps a lot

[west scroll]

they said they took some and it didn’t help when it kicked in

[half night]

aww

[opal charm]

Yeah, it didn't help, had even took one of my moms tylenol's for her arthritis and still didn't help.
My arm feels less sore today though. So thats good, shows that its healing.

nona ✿ ♡ ↩️

[Reply to:](#1146106956621303908 message) oh yeah i forgot, if you have access to ibuprofen (advil) you should take some with a dislocation. i…

[half night]

awww

poor you

[opal charm]

Thank you, I think I'll be ok, I just hope it'll heal fully and properly so it doesn't happen again.

Only issue is rn, is arm and neck tics and getting a job lmao.

[west scroll]

oof I wish you the best of luck

[opal charm]

I really need help
In a bad flare up and my knee hurts so bad it's literally nauseating, braces and pain meds aren't working, I have school so I can't just rot in bed and 'rest'
I need at least ideas on what to do, or how to make it hurt even a tiny bit less

[novel wyvern]

Have you tried ice pack or heat on it, that might help. I have a lot of problems with my knee and they are the second thing that I use when it’s really bad

[lucid sundial]

possible eds here hello 🙂

[lucid sundial]

is it the joint or muscle? if it’s muscular you can try a lidocaine patch, they’re otc (over the counter) i find it’s generally good to keep a few on hand for extremely knotted or pulled muscles

[opal charm]

It's the joint, but it feels like the pain is crawling out from behind my kneecap is that makes any sense?

[novel wyvern]

Yeah that makes sense, you can get pain there from the joint.

[lucid sundial]

maybe massage the back of the knee as much as you can tolerate? if it dosent feel out of place it’s likely still a muscle thing

[opal charm]

No it's not a muscle thing, I know it

Hold on

Purple is where the pain is worst

It starts in the bone where they meet and goes straight to the kneecap, no muscles are involved

[novel wyvern]

Yeah that makes sense

I had it happen a few hours ago there just no bone pain and it was all in the patella area, ended up being my patella had shifted out of place

[lucid sundial]

i mean you could still try the lidocaine patch? it numbs the nerves so you might not get total relief but it might make it bareable enough to get school done?

[opal charm]

I'll try and see if we have any in the morning

[half night]

ohh i get that pain all the time

for me, i just try not to straighten my knee

and take painkillers

and hope it works

[opal charm]

I can't take any more pain meds

It's too bad for them to do anything, I've had the max dosage and I am not going over it ever again

[lucid sundial]

definitely don’t go over but since your already wearing braces i think the best thing to do is use a heat or cold pack or topical treatment. if you have mobility aids definitely use them for school!

[opal charm]

I wish I had mobility aids bro

My dad said I can only have them if the doctor recommends it or if I pay for myself (the doctor said they would limit my ability and pretended to put me on pain meds, and I'm currently jobless 🧍‍♂️)/nav

[lucid sundial]

the doctor said the same thing to me 😭 i’ve been talking about it with my mom and she seems to be slowly coming around so i hope your dad starts to do the same 💕

[opal charm]

Really hoping he does, flareups have been a lot more painful lately and I think they're limiting my mobility more than aids ever will lmao

[lucid sundial]

ive been looking into more affordable mobility aid options but even those are expensive 😭

i feel you about the flares! going on 6 months and my doctors don’t seem concerned enough for my liking 😭

[rare sierra]

GG @tardy fractal, you just advanced to level 14!

[opal charm]

Do you have any recommended sites? Amazon gets hella low quality on them the moment they are under $100

Ky ↩️

[Reply to:](#1146106956621303908 message) ive been looking into more affordable mobility aid options but even those are expensive 😭

She keeps saying growing pains
Growing pains aren't a thing, you may feel sore, but being literally disabled and unable to walk because of how much pain your in is NOT growing pains

Ky ↩️

[Reply to:](#1146106956621303908 message) i feel you about the flares! going on 6 months and my doctors don’t seem concerned enough for my lik…

[lucid sundial]

ebay if it’s available to you or anywhere for second hand things like fb marketplace,

also making sure that if you do get a cane the handle is ergonomic so that you don’t mess up your wrists

i know there’s a fb marketplace group that sells used neo walk sticks which have ergonomic handles, the new ones can be pricey but better quality in the long run and a better investment

with any wheelchair that’s not custom be aware you run the risk of support related issues (hip and tailbone problems etc)

[opal charm]

Oh

Erm

Do you think that would be good?

Ik it doesn't have the ergonomic handles or whatever but like

I've seen a few good reviews on it, it's pricey but not terrible, and it looks nice too

[lucid sundial]

i haven’t heard of it so i can’t say, but for that price i would wait till i had a bit more saved up and get a pair from cool crutches

the lowest a cool crutch pair goes for is 171 but i’ve heard soo many great things about them and their quality

[undone folio]

I use cool crutches and they are honestly so worth the money. I find them to be really easy on my wrists compared to some other crutches. They are great and I 100% reccomend 🙂

[nova quiver]

Just sneezed and felt my spine crunch
EDS things lmao

[nova apex]

(not so) fun fact : a few years ago my joints were locking up in new strange positions and it started to become more n more frequent. i was really scared and at some point was afraid it was dystonia or FND. turns out, its the hEDs 🧍

ive had the joint locking up for a while tho, since i was a kid. like under 8. only in my ankles tho. started spreading and becoming more frequent when i was around 15-16

now im trying to recognize the feeling when its about to get stuck and i try to prevent it but often forget

[dense wren]

wait hEDS can do that?

[fair sentinel]

yup dystonia has been linked to hEDS

[dense wren]

Also dystonia is not joint locking

No resources I've looked into say dystonia is joint locking

[novel wyvern]

Dystonia can cause shaking and twitching really bad, joints don’t usually lock with it but muscles can seize

I have heds and functional dystonia

[dense wren]

That's exactly what I read

[novel wyvern]

That was just how I explain it without checking the web

[fair sentinel]

Wait I remember reading that EDS can be comorbid with dystonia

[rare sierra]

GG @fair sentinel, you just advanced to level 11!

[dense wren]

For us Joints lock when bent (our knee's) or flexed (our ankles) for too long. Idk why but we are hypermobile and have an occasionaly dislocating shoulder.

However we do not show any other symptoms of EDS. Don't think we have it.

[novel wyvern]

Someone can have eds and have barely any symptoms of it which is why it can go undiagnosed or not noticeable, symptoms can change over time

[dense wren]

Huh. Good to know.

[dense wren]

found out that the term i was looking for was called Spastacity. It can cause dislocations when left untreated and it explains many other problems too. It all points to MS Istg.

Though it makes me wonder how similar MS and EDS are

[novel wyvern]

There is stuff online about how both are similar

I don’t remember all of it, but I think there are articles out there about it

[dense wren]

Wouldn't be surprised

[nova apex]

yeah for me at least when i stay in a position for too long or if im too tensed up.

like for example if i sit on my ankles they will lock. if theyre too clenched they will lock. if i clench lets say my hand on a pen my fingers n wrist will get stuck at some point if im not careful with the clenching

[dense wren]

My legs do that so much

Apparently its called Spastacity.

Which can be joint locking when bent or flexed

It's painful to move it from position

[nova apex]

yeah, i remember it started when i was a kid tho. under the age of 8. started in my ankles, when i went swimming. i had to quit swimming bc of it.

i think i already said that oops-

[dense wren]

RIP

I'm sorry

Yeah it was a thing that happened in our kid years too.

[spring swan]

wow 4"2 :0

[nova apex]

not sure i understand how you being short makes you a monster ? /lh

[spring swan]

40,000? 😭

[nova apex]

the way you speak sounds like internalized ableism and im pretty confused because youre very vague so i might just get away for a bit and watch the conversation /lh /nm

[spring swan]

im confused too 😭

what? 💀

[nova apex]

what sorry who said young ? /gq /lh

also u can get some roles in #🐞pick-your-roles if you feel like it

ah ok sorry !!

[rare sierra]

GG @woeful meteor, you just advanced to level 1!

[nova apex]

yeah :)

[nova quiver]

woaah chill out bud lmao

[spring swan]

lmao they got removed

[nova quiver]

lmao yeah

chriiiist

[spring swan]

😭

[dense wren]

Dont forget to grab roles! /lh

Idk but it was for good reason he did

Depends how its said and just being respectful of others

[spring swan]

you weren't even here for it tho 😭

[dense wren]

Maybe, but also wrong chat. Also not something you infodump about first thing

[spring swan]

LMAO?

[dense wren]

@cyan plover

[spring swan]

@cyan plover

wtf 💀

[dense wren]

GO F Yourself!

[spring swan]

kys

[nova apex]

what

[dense wren]

Ikr

...I

Just...

[nova apex]

no but like what happened i didnt see anything /lh

[dense wren]

You don't want to know

He said some very triggering stuff

Thanks Stan!

[nova apex]

sorry to anyone who saw this all

[spring swan]

jesus christ ......................

[dense wren]

Also why's everyone always ping Stan and not just Mods XD

[spring swan]

idk xD

[dense wren]

Yeah....

[cyan plover]

I'm also a mod so get pinged both ways ;) /info

[spring swan]

i dont even say kys to people but the moment called me 💀

whoopsies!!

[dense wren]

Lmao, but it seems we always pester you a lot

[spring swan]

that's why he's here tho tbf XD

[dense wren]

Yeah.

[dense wren]

Yeah but I feel horrible XD

[cyan plover]

Don't hahaha

[dense wren]

We love the reliable mods here

Always and Forever

All the mods deserve all the love

[spring swan]

anyway hope ur ok and anyone else who had to witness that if anyone-

[dense wren]

Why'd I put this in the wrong chat Criesssss

Whyyyyy

[dense wren]

I don't know but I'll be ok.

[dim perch]

Bruh I’m tired and I just want to go to bed but when I lay on my side my shoulder decides to dislocate and it’s so annoying. Does this happen to anyone else?

[fast sphinx]

Hellooo I suspect I may have hEDS (I meet quite a few of the diagnostic criteria, not sure if it would be enough to get me diagnosed tho since there's a couple that I don't have any real way of testing currently, though I definitely pass the Brighton test (either a 7 or a 9, the arms are hard to gauge)), and I'm not really sure what to do about it? I've been to the GP about it but they refused to give me a referral :/

It never used to bother me all that much, my joints would hurt occasionally but usually I was fine, but back in like September/October time, (mild) joint pain started becoming a daily occurrence which. Is not fun

[lucid sundial]

i mean it depends on your symptoms the criteria you meet and wether you want to seek a dx or not. also be aware of the differences between hsd and heds. if you want treatment your going to have to go for a dx. things like braces can be purchased by yourself but other than that you kinda have to figure things out yourself

[west scroll]

although you have to get a diagnosis it’s common for a doctor to reject you cause they’re only given some of the diagnostics for it and often see it as possibly being eds but thinking it could be another thing that is kind of like eds (hence the zebra symbol for eds). If you want to you can find lots of other people who have said their symptoms that relate to eds and see which ones you relate to. it often helps to have a specific list of your symptoms when asking for a referral to get assessed

[fast sphinx]

I think I marked off the diagnostic criteria a few months ago hold oj

*on

I didn't remix that btw I just. Opened it in remix to see what I'd actually written to check for personal details

[tender escarp]

Ill read some stuff here... Ive been diagnosed with hypermobility syndrome for about 2 years and Im aware that there are similarities. They did bloodtests for a bunch of stuff (not eds) and that was negative, but i had some stuff thats seen in chronic illnesses etc..

[rare sierra]

GG @tender escarp, you just advanced to level 1!

[opal charm]

Can you have hEDS without many subluxations/dislocations?

[fast sphinx]

googled it, apparently so

[opal charm]

Huh

[novel wyvern]

You can also have no dislocations with heds, I know someone who hasn’t had one before how has hEDS

[nova apex]

based on all the info ive gathered until now, yes. however they might come later in life

[opal charm]

Oh huh

Makes sense.

[nova quiver]

EDS is a genetic condition, not a list of symptoms

You can technically have it and have no noticeable symptoms, it's just uncommon

[violet zenith]

What is EDS?

[novel wyvern]

EDS is a connective tissue disorder, which is genetic

[nova quiver]

Ehlers danlos syndrome

It's a collection of genetic disorders

[violet zenith]

Oh

[opal charm]

Aight

Alex [Bug] (ping replies) ↩️

[Reply to:](#1146106956621303908 message) EDS is a genetic condition, not a list of symptoms

You can technically have it and have no noticeab…

[nova apex]

hi !!
im looking for a good smart watch.
heart rate measurement required but most of them do that ; blood pressure measurement is not necessarily required ; sleep tracking could be nice.
anyone has any recommendations ?
i dont necessarily have a fixed amound of money i can spend bc i have no idea how much they cost. so just give me your requests and ill find out what suits me the best ! thank u !

[cyan plover]

blood pressure isn't possible (well kinda but not really) but depending on what you want it to do an activity tracker is probably better

they're cheaper and have a better battery life

they usually don't have all the extra features like payments and apps tho

I bought one for my mum a few years ago and she loves it

[near kindle]

Apple Watches are quite pricey but they connect to your phone and you can text, call, have apps, etc. it also tracks your activity and monitors your heart rate pretty well. I have one myself. But, if you’re looking something under $150, I’d say a Fitbit of some sort

But you have to have an Apple phone to connect

[cyan plover]

apple watches are nice but only if you're in the ecosystem if you're not they're the worst

also just really expensive for almost no functions 😭

[cyan plover]

its a xiaomi Smart band 7

[nova apex]

idk its weird some of the watches say they can take blood pressure ?? im not sure how hence why i said its not necessarily required 😭

[nova apex]

i dont have any apple devices but thank u for ur advice !! im also looking into fitbit rn !

[nova apex]

ty ill look it up too !

[cyan plover]

blood pressure isn't possible but with a calibration and some guessing they can get close but it's not comparable to a normal one

smartwatches are expensive af tho

but an activity tracker is pretty cheap

I got the xiaomi band on a discount and paid 40 for it

but if u want a decent smartwatch you're gonna be looking at 200+

[nova apex]

yes i saw that 😭 LOL

[soft path]

hiii

[pure tendon]

I love my Apple Watch and I recently downloaded this app that works great to track my HR!

I have an older series, a series 3 and it works great, I’m sure they go for a bit less and maybe you can get them second hand

[west scroll]

yup

dislocating and subluxing aren't the only symptoms and any type of eds is going to be different for everyone

[cyan plover]

that doesn't change the fact that they're only nice if you're in the apple ecosystem

[nova apex]

im looking at the 'gard pro health 2+' right now
the price is almost halfway down and the sale stops today LOL

[cyan plover]

the reviews aren't that good tho from what I've seen

[nova apex]

...

sob

pls dm me where u found them

bc i CANT find reviews ?? except from the website where theyre all 4 or 5 stars ??

@cyan plover /nf

[cyan plover]

same thing on Trustpilot but the content of the reviews was pretty bad lemme find one

[nova apex]

ohh ty !

yeah i saw that website n i kept it to read later bc im trying to do homework rn

[nova apex]

but also the reviews were for different watches

ouch

i also saw many people being happy with the customer service so ig its just based on ur luck 🥲

[cyan plover]

true but I usually also check Trustpilot because a device can just be a mistake like they bought the wrong one but if the whole company is shit that's more important

[nova apex]

i'll check that in a bit tysm !!!! /gen

[cyan plover]

and the product specific ones on Amazon

that's always a good tip too check another site because the company controls the reviews on their website but can't do the same on other sites

[nova apex]

the thing is i tried to search it up and i kept finding 2, not 2+

they dont sell the 2+ on amazon or at least i couldnt find it

[cyan plover]

well ofc I can't really give a review but just looking at the website and the fact all reviews are 5 stars (and some didn't even match with the picture) also the almost 50% off but only today seems sketchy

[nova apex]

aaaaaa

i mean it isnt only today, it says it ends today but idk how long its been up for

eeeeee

[cyan plover]

yeah no lmao I just checked the dutch website in January (wayback machine) and it has the same banner as it has today but with a different end date

if u could send me the link I can check the same for the site ur looking at

[nova apex]

https://gardpro.fr/products/gard-pro-health-smartwatch-2-plus?variant=46345950593335

[cyan plover]

this was in October

[nova apex]

[nova apex]

so uh i read all the reviews on the watch and theyre terrible for the most part so im really sad lol

guess im not getting that one then

apparently they even lied on some functions like the ECG which is advertised on the website but according to a review, it isnt an available feature and they messaged the support team and they said 'oh yeah the watch doesnt have an ECG'

?????

[novel wyvern]

I used a HUAWEI band for a few years before switching to an Apple Watch a few months ago. The HUAWEI bands I used were 5-EAB and 2-7c2. The watch monitors okay and they aren’t really expensive but the bands to keep it one your wrist can break easily

[cyan plover]

well it really depends on what you need

like do you want a big screen?

(I recommend not getting one with a big screen if u don't want to spend too much)

[nova apex]

im half tempted to give up lol

[cyan plover]

with activity trackers (the smaller bands) I have experience with a few xiaomi bands and a fitbit inspire

they're both around €50 but I prefer the xiaomi one

https://www.mi.com/nl/product/xiaomi-smart-band-7/ this is the one I bought for my mum (at least I think it's this one could also be the 6 tho)

[nova apex]

xiaomi band works with android/samsung too ?

[cyan plover]

yess ofc

xiaomi is also just android!

they have their own app but I'm pretty sure it can even link with google health

[nova apex]

ok thank u

sobbing over smartwatches and activity trackers LMFAO /lh

[cyan plover]

my mum just said she loves it and wears it 24/7 hahaha

[pure tendon]

Oh absolutely! I always forget abt that. Would be amazing if it was available for everyone.

[cyan plover]

well also the price is a thing 😭

[pure tendon]

That was a thing for mine too 😭 it was a struggle. Got mine pretty affordable. I use the TachyMon app for my HR. I think you can download it on any watch not 100% sure though

[cyan plover]

isn't heart rate built in to most??

[pure tendon]

It is. Unfortunately with Apple it only records heartrate every 10 mins or so. I’m currently tracking mine consistently for my cardiologist. The app records any changes in heartrate. Shows you the variability and gives you alerts. It’s been super helpful so far. But just like any Apple product with the app it drains the battery like crazy 😭

[nova apex]

i might actually get the samsung galaxy watch 4
because i have a samsung phone
and because it looks nice
BUT
ppl say the battery gets down in the span of 1-2 days
which is NOT good
so idk

[pure tendon]

Do you mean it dies in 1-2 days or that the battery will die quicker even after you charge it after 1-2 days?

[nova apex]

the battery dies after charge in 1-2 days

but then u can re-charge it

[pure tendon]

Ohhh I see that’s MUCH better than mine, only lasts like 12 hours 😂 I’ve heard fitbits have pretty good battery life I’m not sure what functions they have though

[nova apex]

fitbits are really expensive-

out of reach for me

tbh the samsung galaxy watch 4 also is expensive but my mom is willing to help pay for it bc i did good at uni

also your watch only lasts 12 HOURS ???? 😭

has it always been so battery-consuming ??/nfta

[cyan plover]

yeah the galaxy watch 4 also only gets 20 hours (if not less) most of the time unless you put it in ultra power saving mode (disabling most features)

[cyan plover]

especially since the watch 4 is a 2.5 year old watch it's battery life will be lower than the advertised 30-40 hours

that's the case for most watches running wear os (android) or watch os (apple)

there are only a few watches that last longer
The apple watch ultra which lasts 36 hours in low power mode
Oneplus watch 2 which lasts 100 hours in smart mode

the only watches that last longer usually have a stripped down os which doesn't have a lot (if any) apps and you usually can't pay using them (with garmin as an exception)

[surreal brook]

My Fitbit lasts for a week about, it’s a couple years old but it tracks heart rate, it’s the inspire two

[pure tendon]

It does it’s horrible 😭 only since I go my app that I use frequently it sucks the battery

Usually I have to charge it based on how my day is going so if I’m going out later I’ll charge it halfway through the day

[lucid sundial]

i use an apple watch with tachymon, very expensive but i’d say worth it. i had a fit bit but it only tracked every 5 minutes so it would miss large tachycardia episodes and wouldn’t keep track of them. i’m not sure about any other brands but with the apple watch you can download the tachymon app which gives constant hr monitoring but i couldn’t download anything like that on the fitbit.

[nova apex]

thank u ! i dont have any apple devices tho but ty !!

think ill go for the samsung watch 4

[undone folio]

What series do u have? I’ve also been looking for a watch to track my HR for a while. I was looking into Fitbit as I thought they tracked more than Apple Watches.

[lucid sundial]

i have the 9, which i specifically got for both the hr and ox but they’ve disabled the ox function on all the watches now. i’d say just get an se as it’s cheeper for the same function

[undone folio]

Ok I’ll look into that ty!

[surreal brook]

i had the same issue with the fit, it tracked like every hour, and missed the bigger incidents I had, so I agree with what you suggested!

[violet zenith]

does anyone else with EDS get PIP? if you do how long did it take for them to decide after receiving your form? i've been waiting just over a month and all my friends have already got theirs i'm getting to inpatient cuz i need to quit my job

ping if you reply pls^^

[novel wyvern]

I have hEDS and I have PIP, at the moment there is a huge back log so it can be waiting at least 6 months. When you get it you will be given back pay from the submission date

I sent my renew paperwork in July and they sent a letter the other month saying that I have a year extension because the backlog is so bad

[nova quiver]

PIP wait times aren't dependant on your severity or condition
It usually takes 8 or more weeks iirc

Also if you're rejected absolutely 100% appeal!! They usually reject outright on the first attempt and then accept when you appeal

PIP also backdates all payments so even if it takes 6 years to get it, you then get 6 years of payments that you should've recieved before

[novel wyvern]

Most appeal cases win too

[violet zenith]

omg that's so long

[violet zenith]

yes yes i know that bit, they said they received my form at the end of january but i started my claim in september

[nova quiver]

Yeahh that could take a couple more months but hopefully it shouldn't be too much longer!!

[violet zenith]

fingers crossed !!

[west scroll]

what is PIP?

[novel wyvern]

PIP stands for Personal Independence Payment which is a disability benefit in the UK, I’m too tired to explain it more

[west scroll]

ah ok

I looked it up on google and it showed that it was a disorder where you easily fall backwards and lose your balance or something

[nova apex]

yall

what are your experiences with physiotherapy

bc yesterday i broke down crying bc of pain (ive been having REALLY bad pain days since monday) /nav

and my physio told me that i needed stronger treatement options such as meds and physical support

she told me physiotherapy was not working

i just wanna know if it happened to anyone else

(physiotherapy is also called physical therapy)

[half night]

i was reccomended to physical therapy by my chiropractor but my mum said we don't have enough room in our schedule especially with sports seasons starting so i havent gone yet (probably will after im done with school)

[nova apex]

okay, ty for input :]

[minor lynx]

I always thought that this was normal

Also, what exactly is Ehlers Danlos Symdrome

[novel wyvern]

It’s a genetic connective tissue disorder which affects the entire body in lots of ways

[near kindle]

^^that and its genetic based

[minor lynx]

I got a 5 (I can’t really tell with my knees and elbows)

[west scroll]

you can ask someone to take a picture of your elbows and knees so then you can see if they hyper extend

[novel wyvern]

Elbows are hard to tell but knees aren’t as difficult

I have a 8/9

[west scroll]

knees are a lot more difficult for me to see than elbows

I think I got like a 7 I don't remember

nvm I do remember

[novel wyvern]

I think I can tell with my knees because of how much hypermobile they are

[rare sierra]

GG @novel wyvern, you just advanced to level 5!

[novel wyvern]

I walk back kneeing most of the time

[west scroll]

ah yea I can tell by I how much I can bend over without moving my hips or ankle

don't try doing that if your knees dislocate easily

[novel wyvern]

Yeah I can’t do that because my spine isn’t hypermobile which is why I have a 8/9 and not a 9/9

[west scroll]

my pinkies and thumbs aren't hypermobile which is why I have a 7

[novel wyvern]

I wish mine were a bit less hypermobile to be honest

[west scroll]

yea the tips of my fingers being hypermobile is so annoying when lifting something T-T

as well as when I play instruments cause my fingers randomly bend back like a bridge collapsing or something

[minor lynx]

My pinkie will sometimes just bend backwards and lock while playing instruments, same with the thumbs

[near kindle]

My pinkie will lock when I’m playing my instrument too 😂 it’s been doing that for years

[half night]

my pinkie is so weak on my violin so i cant trill or use vibrato with it 😂
it also sucks because my bow grip is wrong because my pink straightens because it cant hold the weight of the bow curved lol

[minor lynx]

it happens with all of my fingers but mainly the pinkie and thumb

[spring swan]

omg stop that happens to me too when i play the guitar 💀 i think the ring finger tho its so weird and annoying LOL (i dont have eds [atleast not that ik of])

it goes like completely straight apart from the last joint and its so annoying lmao

[surreal brook]

im not allowed to play instruments because of my EDS- but when i tried in the past the same happened to me

[opal charm]

We struggled to hold the notes with our fingers, our wrists would hurt lots.

[fair sentinel]

anyone here have spEDS or any other rare form of EDS? I really want to learn abt it bc everytime I search it up it's only hEDS

[west scroll]

Spondylodysplastic EDS?

according to ehlersdanlosnews.com the 2 main symptoms are short stature and weak muscle tone

another symptom is bowing of limbs

I think it mainly has something to do with your bones mainly

[opal charm]

Weird question but does anyones period effect their pain?

Like my knees hurt SO much nore when I'm menstruating and I have no clue why

[nova apex]

do you have endometriosis ? /gq /nfta

because if you do, then it might "just" be endometriosis pain

[dense wren]

Is it normal for a (recently had and fixed in february) subluxated shoulder, to just be popping/cracking more than normal or more than it used to?

[opal charm]

As far as I'm aware I do not, but given recent issues I might bring that and similar issues up with my doctor

aster-tje ↩️

[Reply to:](#1146106956621303908 message) do you have endometriosis ? /gq /nfta

[silk zealot]

i don’t have eds, but i get pain in my legs/knees on my period anyway so like aster said it could be something that happens at that time anyway

[novel wyvern]

Yes, I have to make sure I have as little planned around mine just so my pain meds can kind of control my pain. I also get more subluxations as well

[pure tendon]

I don’t have EDS but my joints hurt soooo much more when I’m on my period

[opal charm]

Anyone else here take naproxen?

[surreal brook]

Recognize the name but not currently

[nova apex]

i dont

[native crown]

i dont /g

[nova quiver]

Used to - never found it particularly helpful. It's worth a try if you want to because it does help some people but be aware it can cause stomach issues easily and it has a high likelihood of developing a resistance

Not saying you shouldn't take it, just letting you know

[opal charm]

Thank you, I told my doctor that I have to take way more than the suggested dose for most pain meds just for it to dull the pain a bit and she put me on that anyways, just wanted to see if it did anything for anyone else

[nova quiver]

Unfortunately it's a common cop-out med when doctors don't feel like trying. Have you tried celecoxib? Some people hate it but I've worked well with it

[opal charm]

I have not, this is the first time she's done anything but brush it off as "growing pains"

[nova quiver]

I'm sorry you're dealing with that./gen

Naproxen is essentially stronger ibuprofen so you're not actually getting much of a difference

Id suggest looking up some meds on your own (on official sources, not branded or advertising pages) and ask her about them

Or change your doctor if you can

[opal charm]

Do you have any recommended sites I could find things on?

[nova quiver]

I've always looked on the NHS websites but I don't know if you're from the UK

[opal charm]

Nope, America :P

[nova quiver]

Whatever your government official healthcare advice site is should be a good idea

Be careful of brands trying to sell you their product rather than honest reviews

And ask around in disability support servers, you'll probably find someone who has taken it before who can give you some insight

[opal charm]

Why does my shoulder keep cracking or need to be cracked back into place? Its beginning to become a pain in the butt. /gq

PK wheres my pfp sksksksk

mood

Karkat Woods (They/Them) [??] |🧪📼 ↩️

[Reply to:](#1146106956621303908 message) PK wheres my pfp sksksksk

Pk is such a bully sometimes

Ugh I hate it when it does that

Karkat Woods (They/Them) [??] |🧪📼 ↩️

[Reply to:](#1146106956621303908 message) PK wheres my pfp sksksksk

[pastel sleet]

Could it be dislocating or something? Or would that be painful?
(I’m not sure 😅)

[opal charm]

Its the same shoulder we subluxated back in february by sleeping on it wrong(?).

TJ 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) Could it be dislocating or something? Or would that be painful?
(I’m not sure 😅)

Ayyy my pfp works now!

Hmm sounds like that should be checked out

[pastel sleet]

Nice

(Agh I keep forgetting ap isn’t on here lol)

[opal charm]

Pfft it happens

We like counting in #counting so we don’t have it on but it annoys tf out of me because I hate my proxy and don’t know how to change it

What do you want to change?

Terra | 17 | She/They 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) We like counting in #counting so we don’t have it on but it annoys tf out of me because …

Maybe I can help?

[fierce saddle]

Im not sure if i have ehlers danlos, its a possiblility, quite a few of my joints are hyperflexible and my joints also lock like easily? Idk, i want to explore this possiblity though, so i thought i mkfbf follow this thread

[opal charm]

The thing that goes before text

Karkat Woods (They/Them) [??] |🧪📼 ↩️

[Reply to:](#1146106956621303908 message) Maybe I can help?

[opal charm]

I figured it out!

Ugh avatar pls

Use
Pk;m [member tag/name] proxy add text [proxy]
to add

and use
Pk;m [Member tag/name] proxy remove text [proxy]
to delete

Terra | 17 | She/They 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) The thing that goes before text 📎

Thanks!
Our avatars aren’t working now (annoying), but it’s something wrong with discord (according to pk mods)

oo they are now

ye same

Terra | 17 | She/They 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) Thanks!
Our avatars aren’t working now (annoying), but it’s something wrong with discord (according …

it's being a bit silly xd

Yeah. Our avatar is only working here

[opal charm]

Ours keeps doing that lol

Terra | 17 | She/They 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) Yeah. Our avatar is only working here

EDS chat loves avatars

[half night]

i think thats the CDC or the FDA for official websites

[fierce saddle]

I have all except the elbows but my knees arent as sever hypermobilitu

Whenever i walk my knees they kinda like lock then unlock and it hurts quite a bit so as the pain has started to bemore apparent ive started to wear knee braces excspt my good knee brace hurts when i sit down so its like a love hate relationship but when i started using them i realised bow much pain i am in normally, ive also been looking for cheap ankle and wrist braces in my area cause my ankles are quite hyperflexible and unstable and my wrist acts up sometimes, ive been starting too look more into syndromes like this my mjm just tinks the pain is from doing martial arts but it has been happening since before i started and i havent done it in a week and she still says is martial arts, ive been looking more into synptoms of this and FND, i do have quite alot of fnd symptoms, such as seizures, my wrist locks sometimes, stiff like that, but im not sure if hypermobility is part of FND ofc ik you can be hypermobile and have nothing going on but i am just trying to find some answers

I just realsied how long this message is sorry

[novel wyvern]

I have heds but I also have a lot of FND symptoms. What type of wrist and ankle supports are you looking at I have a few that work my wrist one I bought and my ankle ones where given to me. I have extremely hypermobile wrists and ankles

[fierce saddle]

Im honestly just looking fir the cheapest ones at the moment cause im broke lol, also cN you see my messages above cause its says the ey havent sent

And i canr get them online cause mg parents willbave to know and well yea

[novel wyvern]

The cheapest ones that work for me are wear they made a support out of tubby grip

I can send a pic if you want to see if it could work for you

It doesn’t do much but it’s better than nothing really

[fierce saddle]

Ok thank you

[novel wyvern]

It’s not great I’ve had mine for a while keep meaning to make new ones

[fierce saddle]

Ah ok

There is some at dollar stores where i live and the sts where my knee brwces are from they actually have wuite a variety i just havent gotten to going to one

[novel wyvern]

If you have the material then you just have to cut a thumb hole and then make it a suitable length for you

[fierce saddle]

Thank you forthid infomation tho

[fierce saddle]

Yea

[novel wyvern]

Np

[fierce saddle]

I think we have some of it at home im not sire thi

[novel wyvern]

Just ping me if you want anymore information

[fierce saddle]

Thank youu

[violet zenith]

I might have EDS, both of my sisters and my mum have it and i have all the symptoms, so it is a posibility but yeah, um. Hi there!

[fierce saddle]

Damn

Hi

[opal charm]

Meow

[fierce saddle]

Im quite happy because i didnt wear my braces on my knees today and it wasnt that bad, or i didnt notice idk, so thats really good but then my uncle at the train station was like lets go walk atound and look at some shops and by that point i was nearly falling over from leg heavyness/tiredness, as i had been walking sround for a lot today, sorry if this doesnt fit in this health forum, i am also hopefully getting a sunflower lanyard in a few months hopefully. I also have a appointment (i think) with a physio soon which hopefully will get my put onto a track to get a diagnosis of some kind, also a little question, can you have more tan skin bht it still be able to easily see like veins and stuff cause i have more of a tan skin but i can still see quite a few veins and stuff tho

[opal charm]

Giggling, I just remembered that my doctor tried basing my hypermobility entirely off the "thumb to wrist", I should have just bent my elbows/shoulders at her instead of saying no and rambling

[nova apex]

i keep researching hypermobility and its actually super interesting because its SO MUCH MORE than just the beighton test !!!!

i do like comparing my hypermobile body to non-hypermobile friends

its fun (when it doesnt hurt) /lh

[nova quiver]

My elbows do that and I was so shocked that was hypermobility! My mum has a habit of taking anything she experiences and calling it normal when I ask about it. It's not normal I just have a bunch of genetic conditions that come from her 😭

[copper olive]

Not me but my sister

[fierce saddle]

My elbows dont do that but knees fingers ankles toes are hyper flexible and my hips shoulders and wrists are kinda hyperflexible

[fierce saddle]

Ah yea

[fierce saddle]

Welp

[opal charm]

It's shoulders, elbows, kees, ankles, and hips for us

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) My elbows dont do that but knees fingers ankles toes are hyper flexible and my hips shoulders and w…

And I think fingers

[fierce saddle]

Valid

[nova quiver]

As per my assessment:
Neck, shoulders, elbows, wrists, fingers, ribs, pelvis/hips, knees, ankles

[opal charm]

How can ribs be hypermobile /genq

[novel wyvern]

They can bend inwards and the pop outwards

It hurts a lot

[fierce saddle]

Owwww

Wait are they joints?

[opal charm]

Oh, mine do that, and they dislocate a lot

[fierce saddle]

Or is that just dislocating?

[nova quiver]

They can sublux fairly easily!

[opal charm]

It's really annoying

[fierce saddle]

Ah

[novel wyvern]

The bottom ribs are the ones that go the most I find

[opal charm]

It's the bottom/lower middle ribs for me

Lots of movement there

[nova quiver]

Not technically but they aren't solidly attached to your spine. This helps you move and bend your body but it also means they can slightly slip out of place

It's near impossible to fully dislocate them so it's a partial dislocation, which is called subluxation!

[nova quiver]

Yes! It feels like an asthma attack sometimes because it hurts around the bottom of my lungs

[novel wyvern]

Yeah I get that

[opal charm]

I forget subluxation and dislocation are two different things sometimes 🧍‍♂️

Alex [semi hiatus] ↩️

[Reply to:](#1146106956621303908 message) Not technically but they aren't solidly attached to your spine. This helps you move and bend your bo…

[nova quiver]

They're technically the same thing but to different severities

I don't dislocate often/if ever personally but subluxing happens somewhat regularly

I did my toe the other day that mega hurt 🥲

[opal charm]

Ew

Our toes used to proper dislocate all the time

It sucked so much

[nova quiver]

Ow :(

[novel wyvern]

Yeah I have mine go a lot mainly the right. I dislocated it in 2020 and it went purple and hasn’t gone back to normal since

[nova quiver]

You.. should probably see a doctor about that

[novel wyvern]

I did they didn’t know what I had done and they were a specialist as well who knows about eds

[nova quiver]

Aw man :/

[novel wyvern]

I figured it out myself a year later that I had dislocated it

I confuse a lot of specialist doctors and consultants who know a lot about EDS and hEDS

It annoying and fun at the same time

[nova quiver]

Last time I was in the ED the triage nurse actually knew what hEDS was and asked me relevant questions about my pain (related to why I was there) it was so nice to have someone understand for once 💕

Also promised to Google my rare condition as he hadn't heard of it before it was super sweet

[novel wyvern]

Yeah

I had a ambulance person do it the other week and he told 4 people straight away and they were all researching it

All in hospital who had no idea what it was, it was cool that someone actually had people looking it up

[nova quiver]

It's a shame nobody knew already :/

[novel wyvern]

Yeah I wish more hospital staff had knowledge of it because it would help a lot of people

[opal charm]

And kids doctors

[novel wyvern]

Yeah

[opal charm]

Most of the pediatricians here are for people 18 and younger, and none of the doctors know what it is

The sooner they learn about it and help younger people, tbe easier their futures will be (hopefully)

[novel wyvern]

I have had the same problem with both age hospitals but it was slightly better at paediatric for me

[opal charm]

Pediatric here sucks sm

We should just get a better medical system as a whole tbh

[novel wyvern]

I think it’s because I went to one of the best in the uk

[novel wyvern]

I’m going to guess us health care

[rare sierra]

GG @tardy fractal, you just advanced to level 15!

[opal charm]

Yep

[novel wyvern]

I’m based in the uk but I go to the us as often as I can since I have family over there

So I know a bit about things over there

[opal charm]

Where do you usually stay while your here? /nfta (like state, "the south", etc. Don't dox yourself obviously lmao)

[novel wyvern]

North Carolina

[opal charm]

I used to live there

Only for a few months though

[novel wyvern]

I really miss it I have been for almost 6 years

[opal charm]

What's stopping ya from visiting?

[novel wyvern]

Money mainly

[opal charm]

Ew

Money sticks

Sucks*

[novel wyvern]

Once I can get a flight I’m going because I miss it all the time

[opal charm]

Good luck with that /gen

[novel wyvern]

It’s so expensive to fly there

Thanks

[nova apex]

were we talking about elbows

im an elbow specialist /j

my elbows have to be the most flexible joints in my body lol

lemme just

.

(i drew lines over it bc i was explaining the beighton scale to sm1)

but yeah. elbows

[novel wyvern]

My elbows aren’t that bad but my knees are like that

[rare sierra]

GG @novel wyvern, you just advanced to level 6!

[nova apex]

my knees arent as bad as my elbows LOL

surprisingly, my elbows tend to not hurt too badly and not cause too many issues

which. im not complaining about

[novel wyvern]

My elbows started hurting me a few years ago before that they were fine just hypermobile. But when they started hurting it was because they were starting to subluxate

[nova quiver]

I had to retrain myself to do a thumbs up "normally" because I always did it at a right angle XD

I also never got my pen licence as a kid (maybe that's an England thing? Idk)

[nova apex]

fair,
ive never restrained myself for my elbows tbh. it hurts if i dont extend them all the way

[nova apex]

..it might be (an england thing)

[novel wyvern]

I wish I could use my thumb more all I can do one one side is basically a thumbs up

[novel wyvern]

Aww

I loved getting mine

[nova quiver]

Lol that's fair

When we're kids in school you're required to write in pencil until your writing is "good enough" to use pens

Which in theory is great to reward good skills building and make sure kids can write correctly.
But it also means all the kids with various disabilities, diagnosed or not, end up feeling shitty because they can't understand why they can't do what everyone else can..

/nav

[novel wyvern]

In my school they gave me mine because it improved not because it was ‘good enough’ they knew I had a really hard time though and were super proud of me for doing what I could. Was one of the last people in my year to get it though

[nova quiver]

I never got mine but last a certain age they expected you to use a pen and stopped asking to see your licence

Which made me feel really behind../nav

[novel wyvern]

I never got asked to see the license

I just said I had one if they asked and they believe me

[fierce saddle]

Ah

[nova apex]

my rheumatologist appt is SO SOON

11th of april

actually crying rn because i booked the appointement like last november i think ?? somewhere between oct/nov/dec thats for sure

im still so scared the doctor wont know anything about EDs (which is a very possible possibility sadly lol)

but im bringing a friend with :)

im so lucky i finally got an appointement, i really hope i get answers

so im currently making a google docs with all the symptoms i can think of + photo / video proof + all the documents i have (not many) so i dont forget any during the appt

yes im only starting this now because im a huge procrastinator and ive actually been wanting to start a medical binder for like 2 or 3 years now but yk. procrastinatioin /vvvneg

im getting there tho and im really grateful for all my friends :)

also grateful for you all ! i joined the thread when we already had the suspicion but i dont doubt yall are helping aswell :)

[violet zenith]

How does someone know if it is possible they have EDS. I know I have hypermobile joints but I know that that can happen without any underlying problems. However I have noticed that certain joints almost like feel like they dislocate and I can't move and they hurt horribly. But what are the symptoms

Also for fun

It's a picture of my thumb to my wrist

[novel wyvern]

Do you have other issues other than joint problems like gastric issues or anything

[violet zenith]

Define gastric issues please

I know that eating can cause a horrible stomach ache immediately after like swallowing food and eating in the morning is horrible

I also have nausea when eating sometimes

[novel wyvern]

Yeah that can be to do with stomach acid issues I find. I have gastric reflux disease

[violet zenith]

Is there anything else to look out for? /genq

[rare sierra]

GG @violet zenith, you just advanced to level 7!

[novel wyvern]

There is an entire list of issues people can have/get with EDS

It varies by type, hEDS has the most issues that come with it

[violet zenith]

Is there any way to know the possible type?

[novel wyvern]

You could look at ehlers-Danlos support to look at each one

[violet zenith]

Ok thank you

[nova apex]

*hEDs is the most common type.
as far as we know.
/info /nm !!

[minor lynx]

Not elbows but my fingers are super flexible

[opal charm]

Can you tell when a limbs about to dislocate/subluxate? Like kinda a feeling of being on the verge of doing it?

I felt like a weird airy feeling between my joints and a lot of discomfort a split second before it happened, but that was when it was getting frequent enough that it didn't hurt

Now I don't even notice it most of the time

Huh, good to know we aren't the only ones, kinda odd tho.

[nova apex]

10 days til my rheumatologist appointement (im gonna do a countdown bc im overly anxious lol /nav)

[violet zenith]

My knees do a thing, I used to call it "locking" but I've come to the realisation they aren't locking, they are partially dislocating :/

[opal charm]

so subluxation. rip, I'm sorry

★ Quinni ★ Dino ★ ↩️

[Reply to:](#1146106956621303908 message) My knees do a thing, I used to call it "locking" but I've come to the realisation they aren't lockin…

[nova quiver]

If you mean when you're standing you're likely just hyperextending!

[violet zenith]

Nah, it's like I'm sitting down, I go to stand up and I fall down coz my knee cap like moves weirdly and then it's like outta place

[nova quiver]

Aw man :/

[opal charm]

Ours tend to freeze in place when hyperextended or in one position too long and be super painful to move.

[nova apex]

same but it happens the most with my ankles/wrists/fingers ! ive learnt to try and not put too much pressure, or tense up too strongly

[opal charm]

Yeah happens when we are just in one position too long though.

aster-tje ↩️

[Reply to:](#1146106956621303908 message) same but it happens the most with my ankles/wrists/fingers ! ive learnt to try and not put too much …

[nova apex]

same 😭 sometimes i dont wanna move but when it starts tensing up im like "oh shit" and i try to move or stretch to save it but its already tensing up and its SO PAINFUL

[opal charm]

Ikr!

aster-tje ↩️

[Reply to:](#1146106956621303908 message) same 😭 sometimes i dont wanna move but when it starts tensing up im like "oh shit" and i try to m…

Its ouchhh

[nova apex]

fingertips ? weak and in pain. finger splints ? expensive and out of reach.
should i make them myself ?
has anyone ever made this ?

[opal charm]

I have :D

Made them too tight so they just hurt more but like
‼️‼️‼️

Ignore the pinky being bare, that was when I was making them and my friend wanted to see

[nova apex]

love them !!!!

would you mind explaining how u made them or something ? /nf (i can search online)

[opal charm]

It was super easy

Just find your ring size for each knuckle and then make two/four circles (like a spring) in that size

Then just clip the ends so they don't hurt you and make a V shape with them

Let me get a side picture so you see what I mean-

Like this

[nova apex]

ill have to find the wire thing and a clipper LOL
i bet my grandma has wire

[opal charm]

Just make sure the wire isn't thick like mine were

[nova apex]

o they look pretty
do they work well ?

[opal charm]

It is SO hard to bend

[nova apex]

O

😭

[opal charm]

They do as long as you don't make them too small like I did lmao

aster-tje ↩️

[Reply to:](#1146106956621303908 message) o they look pretty
do they work well ?

That was an "after" picture with the rings on and I was trying to get them to hyperextend as a test

I can grab the "before" if you want too

[nova apex]

sure /nf

[nova apex]

o working well !!

[opal charm]

(I was pushing p hard with the splints too)

[nova apex]

thanks a lot /gen

[opal charm]

Just got thinking, is your fingers hurting when trying to hold a pencil an hEDS thing?

[opal charm]

The pain is a universal thing if you don't wright much or something like that, though hEDS can make writing hurt due to hypermobility and weird pressure on the joints

[opal charm]

That makes sense. Just I can't seem to hold a pencil 'properly enough' and sometimes it hurts.

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

[Reply to:](#1146106956621303908 message) The pain is a universal thing if you don't wright much or something like that, though hEDS can make …

[novel wyvern]

Not sure if it’s a hEDS thing but I get it holding a pen or pencil about 90% of the time

I can’t hold them like people without hypermobile can

[violet zenith]

Just found out it isn't exactly normal to have ||wounds|| from simply itching my skin gently. Does anyone else easily get bruising and ||wounds|| take a horrible amount of time to heal?

I have all the symptoms and meet the diagnostic criteria but my mom keeps insisting I should just exercise more. My knee literally almost dislocates everythime I stand from bending down to get something from my locker.

[novel wyvern]

Exercise does help but the fact your knee keeps going then definitely be careful. Only certain exercises can help people with hypermobility. Look for hypermobility strengthening exercises (you can find some on YouTube, would recommend Dr Melissa Oleson has some videos on this that are worth trying).

[violet zenith]

Ty

[novel wyvern]

No problem if you need anymore advice just let me know and I will try to help

[violet zenith]

Ok!

[violet zenith]

same!

[opal charm]

I know some good exercises for knee strengthening - we have a similar problem. I could send you them over if you’d like

Mara {🎶Orchestra Sys} ↩️

[Reply to:](#1146106956621303908 message) I have all the symptoms and meet the diagnostic criteria but my mom keeps insisting I should just ex…

[violet zenith]

Sure

[opal charm]

Could you send it to us too? Our knees are kinda dogshit-

[opal charm]

Mhmm. Whats you’re base account?

And I’ll do it later on because I don’t have any WiFi

[opal charm]

Is a chronic pain sufferer’s pain scale different to a normal person’s pain scale?

[nova quiver]

Yes

Id reccomend having an official pain scale on hand so you're able to describe your symptoms more clearly to a doctor

[opal charm]

Because we’re doing DofE and someone who said they were struggling walking due to pain was crying. But we can barely walk and we’re not crying because of the pain.

[nova quiver]

Your tolerance for pain goes up the more you experience it. It still effects you but you're less likely to cry or put plans on hold because you're somewhat used to it

[opal charm]

Yeah. But I can ignore the pain and stuff. So it’s like a 4-5 on the normal pain scale but we’re also almost collapsing

Alex [semi hiatus] ↩️

[Reply to:](#1146106956621303908 message) Id reccomend having an official pain scale on hand so you're able to describe your symptoms more cle…

[nova quiver]

Yep

For me my base level pain that I'm in all the time I would say is 2 or 3

On a pain scale that settles around a normal person's 5

[opal charm]

Hmm. Ok

[nova quiver]

Here's the one I use but there are others out there

[opal charm]

Is this a good comparison for chronic vs normal?

Just looked up “chronic pain scale”

[nova quiver]

Yeah that sounds about right for me but yours may be different

[stone berry]

Yeah, that looks about right for me. I'm gonna share this with some of my abled friends

[half night]

its sorta right?? im on the side of chronic illness that doesnt get as much pain as some people do?? when im in a flareup, yes this is what it looks like, on a normal day, no. on a regular day i can ALMOST function like a normal person

[vestal prawn]

I walked two laps around a semi big building today from wanting to be with my friends who were walking, and I fear for my body:,)

[half night]

i got hit by a lacrosse ball going 75 mph in the side today 😅

[opal charm]

Yikes-

I only got hit by a wall today

A whole lacross ball must suck a lot

[opal charm]

How the hell do you get hit by a wall?!

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

[Reply to:](#1146106956621303908 message) I only got hit by a wall today

[opal charm]

I ran into it but i blame the wall

[opal charm]

Haha

[opal charm]

yeah im thinking the same thing

Quinn | They/She/He 🐱🎶 ↩️

[Reply to:](#1146106956621303908 message) How the hell do you get hit by a wall?! 📎

Hahaha!!

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

[Reply to:](#1146106956621303908 message) I ran into it but i blame the wall

[violet zenith]

You have a good sense of humour Charlie!

[opal charm]

:D

[fierce saddle]

What is considered to ve flexy skin?

Cause skin is meant to be flexible ofc but to what extent is it then considered a symptom?

Because based of 10 symptoms that came up first i think i have 6 of tge 10, but at least two of those six are quite mild and only occur sometimes

Im just trying to work some stuff out

I just re read it and its 7/11 but he one i found is also mild

[violet zenith]

I started running and almost face planted because my ankle gave out as soon as I started running (I was running because we were playing British bulldog for gym). I couldn't walk on it much for a bit but still ran anyway and the pain eventually went away. 100% do not recommend

[violet zenith]

I've also been wondering but I feel like it varies person to person. But I don't know

[fierce saddle]

Oh god

[fierce saddle]

Ok thanks

Also as far as km aware no one in my family has HEDS, so that makes the chances of me actually having it quite slim

But i am still researcging it as a possibilitu

Just incaseo

[violet zenith]

For us aswell. Not that we know of there is no family with this

[violet zenith]

We are doing the same

[fierce saddle]

Cool

[surreal brook]

Same happened to me 😭

[nova apex]

rheum in 3 days

scary

[nova quiver]

Yaaay! Good luck!!

[nova apex]

sobbing at the thought aaaaaa

[nova quiver]

I'm sure it'll be good :)

[edgy nacelle]

does anyone else get knee hyperextension? my knees have always been going ( instead of ) and it's starting to put a lot of pressure on my ankles and hips

I'd like to get some sort of knee braces but i can't find any online for my specific issue

[opal charm]

Yes, We have this.

eliza ↩️

[Reply to:](#1146106956621303908 message) does anyone else get knee hyperextension? my knees have always been going ( instead of ) and it's st…

[edgy nacelle]

yes i went to the doctors and they didn't really take me seriously 😒

[opal charm]

But it only ends up hurting our knees if done for too long, or they like to freeze in place

[nova apex]

yes

[fierce saddle]

Yes

[edgy nacelle]

if anyone uses something like this and has any recs let me know

[novel wyvern]

I tried a cricket splint which holds your knee straight would not recommend, doesn’t work well with hypermobile legs/knees (also got told by a specialist not to use that type of brace again due to hypermobility)

I haven’t found any that work but that one is the worst one for hypermobile knees, I know it’s not a recommended one but I thought that info would be helpful since it can make our knees worse

Hope that helps in some way

[nova apex]

my appointement is tomorrow ahhhhhhhhhhh

i talked to my friend tho n they reassured me bc

even if the rheum doesnt know anytihng about hEDs

he can still refer me to a specialized EDs institution thing

and there must be some around

like

its sure

so yeah

im still really really scared

but a bit less

[vestal prawn]

Hey, does anyone else get that “I can’t breathe” tight feeling in your chest? Maybe it’s more a pots thing but it’s been really debilitating for me the last few days.

[nova apex]

yes absolutely

[silk zealot]

i get that, it can be awful. things that help me are going outside to breathe cool air for a few minutes and focusing on my posture to make sure my lungs feel as open as possible. i really hope it goes away soon :))

[vestal prawn]

Thanks guys :)))))

[nova apex]

it went really well btw but it exhausted me really badly so i cant do much and ive been basically hibernating for the past couple days

ill try to update as soon as i can

[obtuse canopy]

Has anyone been diagnosed with like somatic pain or something before eds?? Cause i don't think that somatic pain causes your joints to sublux/dislocate..

[cinder nimbus]

It runs in my family, I most likely have it (it's thought to possibly be why I pass out so much without meds, loose veins). My FND will dislocate my joints sometimes, if it's bad enough, so yaaay

[fierce saddle]

Oh god hat sucks

Im not sure but is like poor curculation part of eds/heds

Not super poor but like

Welp i could probs just search this up

Ok well its kinda but not how it says it is in the explanation on google

Its just kinda if im not moving say for example my legs for a bit they go kinda numb and stuff

But the google said it was fingers or toes sometimes turning white or blue

And it isnt hat

So idk

Ah well

Also like if im lying and propped up on my elbows my arms get really shakey? Idk why im putting this in this chat, idk where it fits tho,

[opal charm]

My fingers (specifically pinky) goes numb really quickly and loses circulation which I help by gently massaging. (Not diagnosed and kinda not suspecting as much because parents don't believe)

rats will eat you ||rat bags sys ↩️

[Reply to:](#1146106956621303908 message) But the google said it was fingers or toes sometimes turning white or blue

[nova apex]

it can be. dysautonomia is very very often found with eds/heds, but im not sure if its a comorbidity or a symptom. ill have to do more research on that

[fierce saddle]

Me tooo

[kind wing]

I think I might have it not sure yet though. trying to find a good doctor who doesn't just say all my symptoms are bc of my anxiety 😅

[fierce saddle]

Ah yea

[fierce saddle]

Does anyone have good suggestions for braces that dont let locking of the knees or hyperextending of the knees happen, cause the braces that i have now one of rhem is terrible at its job and barely dies ut and the other works bht it sometimes causes more pain then it stops so i dont wear it much anymore

Also preferbly cheaper ones

[cinder nimbus]

I've never had extremities turn white or blue, but I def have circulation issues, EDS or not. Arms getting shaky is likely fatigue? I have plenty of issues like that

I wish I knew of any specific braces, it's been years since I've had any—I used to use cloth ones with velcro straps

[west scroll]

I'm sure you could find some good braces with enough research on them and what your needs are

[cinder nimbus]

Oh, I meant in the context of Rats asking—I haven't really needed knee ones in a long time (or, at least, didn't have them for a long time and now don't need them so much)

[fierce saddle]

I wasnt actually tired yesterday whichwas weird, i was basixally fully fine yesterday, today has been an knteresting day tho, maybe

[fierce saddle]

I have a wrap around and like just a pull on cloth one, yea im trying to look for ones similar to those, thanks fir help

[fierce saddle]

Yea

[west scroll]

there's also kt-tape and also less expensive versions on amazon in like giant rolls and then you can just look up youtube videos on how to tape whatever you need to be taped and then it supports your joints (idk how it works but it works for me)

[opal charm]

I need to look up better taping videos

I know how to tape my ankle really well but my knee is Not It

It just stretches my skin most of the time

[plush creek]

I don’t know for sure but think I’m hyper mobile or something else. my muscles are always aching, I have flexible fingers, my skin is stretchy, I bruise easily etc

[fierce saddle]

Yea

[west scroll]

do some of your joints bend back farther than they're supposed to?

[fierce saddle]

The thing with the tape is my mum doesnt exactly like me wearing braxes or stuff like that, she thinks its just sore from martial arts mind you i have been off martial arts for about 4 weeks and the pain is relatively the same

[fierce saddle]

How can you tell if your knees bend back

[west scroll]

your mom sounds like she's scared of knowing if there is something actually wrong

[west scroll]

pictures, mirrors, asking a friend

[fierce saddle]

Welp she actually works in massage therapy and does some work at the childrens hospital

[fierce saddle]

Thanks

[fierce saddle]

Well its actually like this home thing for familys of kids eho live far away who are in hospital

[west scroll]

yea not every doctor knows about eds

I've heard stories about some doctors looking up what it is when a patient asks about it

[fierce saddle]

Welp

I havent actually said anything to her abou the hyperflexibilith and pain i just say my knee hurts, ankle wrist ect ect

[plush creek]

elbows and finger joints id say, not sure about the knees since along with the aching i also get stiffness

[west scroll]

ok there's a picture somewhere in this chat and it's like a test let me find it really quickly

this

[plush creek]

I did do a test on myself yesterday actually and crossed some of those off, my fingers bend back very far, so do my toes, I can also bend my back, I’ve been used to that since I have a back tic, and I can just about fit my palms to the floor without bending, my skin stretches abnormally, my hand skin can stretch quite far, along with neck etc

it’s quite to get it all diagnosed, but i have a hospital appointment soon, for a tremor, so I’ll bring it up then

hard to get it diagnosed*