Hypermobility - Blog Posts

Yeah... text to speech has kinda saved my life in that area

My hands hurt a lot too. So like. Limited ability to be on my phone and type or to even play games. Thanks ehlers danlos and fucked up joints.

Question for others with hEDS, specifically those who use a wheelchair:

How does it not hurt your shoulders? I have hEDS, but don't use one, and just about anything hurts my shoulders. I was wondering how moving your chair around wouldn't hurt. Thanks!

I hate being hypermobile so much, I am constantly in pain for no reason other than that my joints are just weird. I’m about to go to college I want to experience life without pain debilitating me constantly. And what’s worse is none of my doctors seemingly care, I’m just so tired I wish I could heal my body so it isn’t collapsing under me.

i'll forget i have EDS and then I'll manage to somehow sprain my ankle sitting down in bed??

So I have a question for others with diagnosed hypermobile ehlers danlos syndrome

When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.

Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?

So I only got diagnosed last week right? I’ve been in pain for years but I never had a name for it that explained the extreme it would go to.

Well today I was walking around with some of my friends getting ready for the show we are putting on and I open the door for them and right after they walk in my hip shoots pain and I hit the deck, unable to get up because of pain.

I don’t know wtf happened, but my hip has hurt ever since regardless of position, sitting, standing, laying

So the prop department is lending me a cane, but can anyone tell me what could possibly have happened?

Hey can anyone who has heds tell me if binders or corsets help with back pain? I’ve been having horrible back pain more frequently recently and I don’t have a way to ask my doctor for recommendations because I don’t have access to chat with him.

Please I’m in so much pain

I was so active today and now I may pay the price (joint ouchie)

in the bed

straight up enduring it

and by 'it' haha well

lets justr say. My Connective Tissue Disorder

hello :3 i forgot to make an intro post, so i’ll do that now.

my username is a placeholder right now until i think of something better.

transsexual man | 20 years old | united states

i love drawing, collecting stuffed animals (especially build a bears and pillowfort weighted plush from target), vintage electronics/clothing/toys/etc, and watching youtube.

my special interests are my little pony: friendship is magic, psychology, genetic syndromes, true crime, cats, and disabilities. i love learning about disability aids !!

i have 4 cats at home. i have a girlfriend and she’s super awesome sauce :3. i love my mom.

i have GERD and i have joint problems which i suspect may be hypermobile ehlers danlos syndrome. it’s really hard to get into a doctor to do genetic testing, and i don’t want to take away time with a doctor from people who really need it. i try to deal with it by using braces for my knees, elbows, ankles, back, shoulders, and wrists.

thank you for listening! i will update this as i get more comfortable ^_^

Peter Parker totally has hyper mobility after the spider bite since spiders don't really have like, bones? So he'll just randomly fall to the floor.

Peter: *faceplants* I'm okay!

Tony: TF was that??

Peter: Slippery bones, help me up.

cane finally arrived who cheered !! :D

hi new people i have had thos account for years but im probably gonna start using it now:D

im 18 :)

Im Toby/Apollo/Allium/fynn(any name is fine) i use any pronouns i dont really mind :]

local philza Minecraft enjoyer

qpr emerald duo enjoyer

disabled and chronically ill :3

audhd

im in a queerplatonic relationship with @reallysleepyish (two years now :D)

i like minecraft Anime and cartoons

i watch hermitcraft empires Fablesmp Dreamsmp and alot of others

i also run @ok-ish-incorrect-mcyt-quotes

WSS AND DT FANS DNI THIS IS NOT A PLACE FOR YOU,YOU WILL GET BLOCKED I HATE THOSE MOTHERFUCKERS :3

nice to meet you

to the older lady in walgreens who came up to me when i was buying my cane and said "whoever gets that cane will be happy". even though i havent used it for long, i don't hurt when i walk, i dont feel like i'll fall. im happy, you were right.

I hate having functional weakness. I can deal with it in my arms and legs, but I absolutely hate it when it is in my jaw.

I can't talk, eat, or drink and when people talk to me, I seem rude. (Unless I'm with someone who knows about it.)

It drives me nuts.

So... I might have something called 'change anxiety' and I hate it.

NOTE: I am NOT SELF DIAGNOSING just by doing research online. I will talk to my mental health team about this to see what they think.

So it's quite literally just anxiety attacks, big and small, whenever things change.

I get really upset whenever people just barge into my room and mess with my things - even if it's just grabbing a book of of my shelf. I on't like it because I know how my room is supposed to be and am trying really hard to keep it that way, so when my mom or even my dog come in to my room, I get really nervous and feel like I have to watch their every move.

I am so overly protective of my room because it is my safe space where I can be either in my bed, on my floor, or at my desk and it doesn't bother or trigger anything as much as the rest of the world does.

I ended up having a complete break down today because my mom changed the angle of my bed to be where I'm laying at a slant ( to help with my POTS ) and I absolutely hate it. We talked about it and made an agreement that if I still feel this way at the end of the week, we can change it back.

Anyone else with hypermobility/ligament laxity/tmj ever just be consuming food n then ur jaw/ear decides to pull a Very Concerning Noise alla the sudden

Anyway I’m like 57% certain my ear/jaw is fine. . .

It’s not usually that loud

Usually it just crackles when I open my jaw

… but it’s fine.

Random tip for the unwell:

If your knees hurt a lot when you stand all day for a job, check how you turn.

I do not know how people are supposed to turn, but given that the way I do it has been an unrealized source of pain, you can do it wrong.

I tend to let my leg stay on the ground for too long upon pivoting, leading to my femur twisting on top of my knee.

The solution I have found is spinning.

You spin on your heel, letting gravity carry you in the proper direction

It makes you look kinda like a weirdo and wears down your shoes faster but at least it doesn’t wear down your knee joint?

Joint pain tips from someone “too young to have chronic pain”:

[I’m not a doc or a medical professional, take with a grain of salt]

- NSAIDs like ibuprofen/aleve are hard on the stomach and liver. If u take it consistently, consider lidocaine pain patches, tiger balm, or topical NSAIDs. (Still bad for liver with consistent use, but not on the stomach obv)

-foam rollers are real nice for thigh or back/neck pain. If you need it for shoulder stretching, make sure to get one long enough to lay ur whole spine and head on.

-rly good shoe inserts are stupid expensive but getting properly sized for one at a place like REI can rly save you a lot of foot, ankle, and knee pain.

-speaking of shoes plz find ones that have enough room for the tootsies. We’re talking abt bone health here.

-you can use KT or other athletic tape to give minor support, compression for medium, and splints/braces for more serious support. Don’t let braces take over keeping ur body in shape tho.

-in my experience, tube/sock-like braces stay in place the best. I’ve tried the kind that Velcro and they slipped constantly.

-if u overwork a tendon, muscle, or joint, it can take a lot longer for it to heal then when it just stops hurting. Be careful to reintegrate activities slowly after an injury.

-while it kinda makes ya feel silly, walking “like a robot” can help hypermobile/ligament laxity folks to keep proper motion in mind

-upside down criss-cross and w-sitting are horrendous for your knees and make your PTs sad

-if you are doing arm exercises, try not to extend your arms back beyond the line of your shoulder

-to my ND folks: try to rest your arms sometimes, Trex arms are comfy but bad for circulation and joints

-if it feels like your eyes are trying to burst outta ur skull sometimes it means you need to lower inflammation in your sinus.

-for my bra-wearing folks: racer-backed bras hurt the upper traps less and distribute weight better

-drink water my dudes. Ur body hates life w/o it

So anyway a nurse made me cry today

i am in pain lol

pros of hypermobility: cool contortionisty shit

cons: on and off horrible knee/ankle/hip pain that lasts for hours/days at a time to the point it hurts to walk

fair trade?

sometimes I’ll be complaining about something bc that’s my right as a chronically ill person, and my parents will chime in with a “you’re in your twenties, you’re too young to be complaining that your back/hips/knees/etc hurt(s)” and I’m like, Yeah??? No shit??? You were AT the doctor’s appointments with me, did you forget the chronic part of CHRONIC PAIN????

GOD I want to enjoy the opening sequence of Arcane S1 but unfortunately I am an ex-dancer and managed to traumatically injure myself while dancing to that song and don’t particularly like dissociating bc of Imagine Dragons so what’re you gonna do

growing up, my mum always told me, whenever i went to the doctors or any sort of health professional, that it was important that i told them that i was hypermobile. she'd done the tests with me (herself being hypermobile and disabled in large part because of it) and though she didn't know the details, she knew that hypermobility was important to have in my health record.

so it was to my great surprise and displeasure that, whenever i told doctors i was hypermobile, it was skipped over. never addressed, never touched on, not even a comment to belie what that meant for me. i myself didn't know the impact hypermobility could have on a person, but my mother had been insistent about that fact. it was important, so why did no one else seem to think so?

i grew up with kids in school who were on the extreme ends of hypermobility. i knew a boy in middle school who could put both feet behind his head. i knew a girl in high school with long, spindly fingers who showed me how far backwards her arm could bend.

both of them had health problems, which became more profound as they aged. i never knew the details, but it stuck out that they were hypermobile, and so was i, and with my own health declining there HAD to be a connection.

common knowledge gives the vague definition of hypermobility as extra stretchy muscles, of being double-jointed. it comes with warnings not to push your hypermobile body into the extremes. don't overextend, you will hurt yourself.

the warnings are warranted. the importance isn't overplayed. these things i knew, but i didn't know why. and without knowing why, they were warnings that i could never truly obey, despite how conservative i became with my movements in a vain attempt to protect what little ability i had left.

hypermobility is NOT stretchy muscles. muscles are supposed to stretch. in fact, it's important to their health (those conservative movements prolly hurt more than helped!). hypermobility affects connectives tissues, and lands under the umbrella of Ehlers-Danlos Sydromes (there are a few) which can range in severity from affecting skin and tendons to affecting blood vessels and organs.

severity is rare, and much easier to catch. this post is for the people who are "a little hypermobile" so that they can understand what makes their body different.

a muscle and its associated tendons are like a hammock. the muscle is the fabric you lie in, stretching to accomodate the load. tendons are the rope that attaches the fabric to the trees, providing a secure anchor for the muscle to operate.

so, what happens when the ropes on the hammock are also stretchy? well, you sit in the hammock and your ass hits the ground.

now imagine that the fabric of the hammock has the ability to clench like a muscle. a normal hammock doesn't need to work that hard to stop ass from meeting ground, because it has sturdy anchors. a hammock with stretchy rope, however, must exert several times more effort, because the more the muscle pulls, the more the tendons stretch.

in short, hypermobility forces your muscles to work harder, because they must first pass the threshold of stretch the tendons are capable of before it can actually do the task it's meant to do. the stretchier the tendons, the harder the muscle needs to clench, the easier it is to overwork.

this info reframed everything i was doing with my body. small tasks of strength required the effort of much larger tasks, and larger tasks ranged from extremely difficult to impossible. holding my arms up so i could work above my head required monumental effort. with an anatomical peculiarity of the feet, i needed to use several muscles in my calves and hips just to stand without losing balance.

so no fucking wonder i crashed and burned in my 20s, when everything i did took all of my strength to accomplish. no wonder i would contort myself out of shape, so flexible that i could anchor myself into extreme poses just to give my muscles a moment of relief, overstretching myself without ever realizing why, and what damage i could be doing.

so, some things to remember:

overextending isn't good for you, but it shouldn't be your biggest concern. instead, be aware of overexertion, both how LONG you are using a muscle without breaks and how HARD you are using it.

small, frequent breaks are your best friend if you need to do something for awhile.

when you take breaks, stretch the muscles you'd been using.

if you need to exert effort to maintain a pose (whether it's sitting, standing, etc) examine whether you need to be clenching those muscles, and why.

actually whenever you are using muscles, try to train yourself to use as few as possible. you can practice by sitting or standing, and relaxing as many muscles as you can before you tip over. finding a sense of balance can make your life so much easier.

become acquainted with what relaxed muscles feel like. chronic tension can distort your perception of this, and result in habitual tension.

so yeah. if you're hypermobile, that's important. don't let a doctor's dismissal make you think otherwise. take care of yourself and know what you are and aren't capable of.