Hypermobility - Tumblr Posts

I went on a short walk today to grab a drink from a coffee shop (driving felt like over kill since it’s like 3 ish blocks away granted with some decline/incline) and I wore my knee braces and I didn’t need my crutches to do it because of them. I’m so happy that I could do that today. Sure sometimes I need both my braces and crutches but the last few weeks I’ve been doing good with my braces and my cane occasionally! Also I feel like I look cute today so that makes me feel good too.

Also the pants I’m wearing today are from Halara (not sponsored lol I wish I was) and their so many of their wide leg “magic denim” or whatever it’s called pants that I have fit my braces under them so well and and make them barely noticeable which I like. I don’t mind my braces being visible but sometimes they make weird lines and stuff. Or when they’re showing they have a weird blue line on them (idk why honestly) so they can’t blend into black pants well but they can go under these well. My braces also fit really well over their leggings/tight joggers without moving which is awesome because as a certifiably sweaty guy my braces like to slide and those make them stay. Also just in general since my braces were custom made and molded to my legs they stay on SO much better than any other brace I’ve ever tried

I hate disautonomia gahhhhhy heart rate was legitimately over 120 going up to almost 170 for at least an hour and a half when all I was doing was relaxing on my couch. Now I’m in bed and laying down and my heart still be racing and pounding around 115. I hate this nonsense. I feel physically like I’m about to have a panic attack from the feeling in my chest even though I don’t feel that mentally at all

As of today I have developed a new tic. Which is where I say scone like a ghost if that makes any sense. It’s like skhoneeeee if we’re trying to pronounce it phonetically

I’ve been laying awake for an hour waiting for my heart rate to go back down after I got up to get water and it’s still like 115 so I can’t sleep and feel it in my throat. This sucks ass yall

My legs fucking hurt so bad. Every inch of them is screaming at me. Fuck chronic pain

Saw a new physical therapist yesterday for my ankles this time and apparently I have the most hyper mobile ankles he’s ever seen (turning my foot in goes to very nearly a 90 degree angle). So that’s fun. He literally said “woah that’s a lot” when he was measuring it.

Tired flames

Points of fire

Burning through my skin

No - it is lava

Exploding within.

A joint too well oiled

A spanner twisted too far.

A tree bent over backwards

And yet sticky, like tar.

A single grain of sand

The last drop of sweat

A step out of place

On a rocky moonscape

It is all for naught.

The rising sun hangs low in the sky

It rests it's weary head

We can but try, he said.

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Disability pride flag

I hope you like it :)

Suggestions, tips, and requests are welcome!!! I don't do any NSFW but I'll create for any fandom. Feel free to use this for something if you want. A like, reblog, or follow if you do would be appreciated!

~Parker

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

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

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

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

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

POTS and hEDS girly here!

electrolyte tablets or packets to put in your water are essential

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

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

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

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

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

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

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

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

Potsies help I need advice

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

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

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

Thank you so much.

POTS and hEDS girly here!!

yeah that’s very similar to what I went through/still go through. If you’re younger and in the US, try getting into the children’s mercy in Kansas City. They do diagnoses for a lot of genetic conditions there. You might want to look into other hyper mobility disorders, but it sounds a lot like EDS

Hello chronic conditions side of Tumblr.

I've been experiencing many symptoms for a very long while (technically all my life but obviously I didn't start paying attention until I was like 12-13) and I don't want to self diagnose but I do know it might be a key part of getting a formal diagnosis, I'm going to list the main symptoms and tell you what I through my research and various legit symptom checkers have concluded I might have.

I am hyper mobile, the orthopaedic told me that when I was like 5 but I never got a formal diagnosis because my parents didn't think it was relevant, however to this day my hip does something weird sometimes when I walk and then hurts afterwards and I have to overstretch it so it stops hurting as much, all of my articulations pop, I've had chronic low back pain since I was like 9 and back pain in general since I was 11, my injuries have a thought time scarring and they scar badly, my hands and feet are generally cold and peripheral blood circulation is kind of a mess, my skin is sensitive and reactive and I get cuts on the less damaging things ever, I have a propensity for bruising and they take a long time to reabsorbe, my pinky and ring finger get numb and tingly when I hold certain stuff (carpal tunnel is on the other 3 fingers I checked), my legs go numb often, sometimes my muscles just feel weak and I'm scared to pick up stuff in case they stop responding. I have a propensity for all kinds of headaches, my gums are also sensitive, I tend to be constipated no matter how much fiber I eat (and yes even if I eat lactose being lactose intolerant I'm still constipated, I just bloat), I have a heat intolerance (I even get rashes if it's too hot out).

I forgot but my ribs feel like they shift when I lay on my side and a couple of times I've had people horrified at something a joint of mine could do (generally my shoulder) and I quite frankly think I almost popped my shoulder out in one of those.

I'm also hypotensive and have a propensity to tachycardia and dizzy spells (or that thing where your vision gets black around the edges) when I stand up and when I do exercise (it doesn't happen when I walk, no matter how fast I do it) and when I exercise I have to stop even if my body doesn't feel tired because I feel like my heart rate is too high but I get cold sweat and shaky hands like it happens when I'm going to pass out. Which I might add I get those symptoms even just sitting sometimes and I have to lay down on the floor or sit with my head between my knees.

I live in a constant state of fatigue no matter how happy I feel, how well I eat or how much I sleep, which I also struggle with sleeping. And the brain fog makes it hard to concentrate.

That fatigue includes my body feeling heavy for no reason at all and being like a zombie all day struggling to even do stuff I want or hang out with friends most days.

The research I first did was regarding the whole hypotension, tachycardia, sport/rest/standing up dizziness fainting thing and honestly every conclusion lead me to POTS as the most likely condition.

That sent me into a rabbit hole of trying to find where the other symptoms where coming from, my search on hypermobility lead me to EDS, particularly H-EDS and honestly I must say a lot of things would make sense but I don't want to self diagnose so what do you guys who suffer any of this conditions have to say? Should I see a professional and just ramble all if my symptoms and see if that gets me somewhere?, or do I have enough of a valid basis to go to a doctor and tell them I suspect I might be suffering from POTS and maybe H-EDS?

Keep in mind I'm from Spain and I can tell you most if not all of the primary care doctors I've gone to have shrugged off all of my symptoms once they checked my heart worked properly in general, they don't even care that I have passed out from low blood pressure during blood draws and have even had convulsions twice after fainting, that and my sensitivity to anesthetics, fuckers just said "you're probably just tired because you're a high school/college/master's degree student", I've gone a fair amount of times since I was 16 and they never check it's always a "maybe it's your period", "maybe you're anemic" (I'm not, my reserves are a bit low but not enough to be considered a deficiency to treat), my blood tests come back well so they couldn't care less, my body weight sits in it's normal range (thankfully, because otherwise I know a good chunk of them would just point to my weight and my period).

Thing is, because I keep overworking myself due to my family situation and I was gifted and I guess that kind of transferred a bit to college, I've finished a degree and I'm on my way to my 3rd master's degree this academic year, and honestly I probably don't complain about the level of pain and tiredness I'm in enough because a) my mother would try to instantly blame it on weight or Physical activity or even just food itself (she's one of those everything you eat is bad, white carbs are the devil incarnate types of person) and I already had an ed for years due to her

b)when I complain about the fatigue my mother tries to one up me and everyone else just advices me to do more sports, spend time with family (no thanks), blame my sleep pattern even though the fatigue is purely physical, tell me I'm over exaggerating or over complaining and that I used to handle pain better as a child (she yelled at me when I complained and told me I couldn't be that tired because I was too young)

I'm going to tell you some more things about me as a child I just now remember my mother complained about: every school day I came complaining that the soles of my feet hurt and my palms too (particularly the right one since I'm right handed) and they'd turn out to be distended. My skin was even more reactive, I was so tired and borderline translucent even when they made me spend all summers at the beach that they took me to the cardiologist several times to check if I had a heart condition and It was working just fine, I experienced headaches almost daily, my immune system was an absolute disgrace, I refused to grip the pencil (scissors and other tools) right because it hurt my fingers, I was always coming home with bruises and injuries that were too extreme for what they would've been for my brother and to reiterate I started complaining about back ache at around 9 years old and of fatigue at 11, and even then me being seemingly constantly tired granted me a couple visits to a doctor to check for leukemia or heart conditions.

I need opinions and people to tell me if there are other conditions I should be researching or if I should just go ahead with the ones I have.

It’s funny to see other alterhumans talking about how they want to be able to curl up in the way that a lot of animals (mostly canines) do when they sleep sometimes. I can more or less do that with my spine, but I stopped because it’s not how spines are supposed to bend. Whoops.

For context: my body is abnormally flexible and it causes all sorts of problems. Most of the hyper-flexibility is in my ankles, but I can almost curl up like a dog. It’s not a super comfortable position, given the problems associated with bending my spine in a way it isn’t meant to go. Remember, just because your body can bend a certain way, does not mean that it should.

Guess who possibly has hypermobility spectrum disorder. 😜

officially got diagnosed with POTS today 😎

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

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

Sometimes accessibility is using an electric toothbrush

One of the best things I did for my chronic pain and ADHD was buy an electric toothbrush with a timer and an app.

This is gonna sound nuts but hear me out.

I've been repeatedly cracking jokes to my dentist, physio and therapist that that my life would be so much easier if I didn't have to stand up for two minutes while brushing twice a day (and end up skipping it because my body hurts too much - followed by getting anxious about not brushing), and my therapist had a stroke of genius (I wish I'd thought of this) and said "well, why don't you try an electric toothbrush?"

I have a crippling fear of the dentist (something about having vampire fangs and various impactions from 9-14 years, braces for 4 years, having eight might be more teeth pulled and ongoing jaw pain from early teens will do that to a bitch - also seriously? does anyone like the dentist? shout out if you do but I cannot relate) and he knows that I get overly anxious and obsessive about brushing my teeth well to avoid the dentist and fillings as much as possible. So, I listened and used my disability funding. It took a lot of back and forth to justify spending that much on a toothbrush, and I wouldn't had I not had the funding

But wowow, has it changed sm. It's easier to sit down to brush my teeth when I'm not having to put so much effort into it and my teeth feel cleaner. I'm doing a better job for the same amount of time and effort - anyone with chronic pain and fatigue understands how precious those things are... and the best bit? The app it turns the whole fiasco into a game (as long as sending notifications to remind to replace my toothbrush head and to brush). I look forward to cleaning my teeth to see if I can do better than I did yesterday. It's insane that something so simple as having a "brushing score" can hack the ADHD braincell into wanting to do it.

I dissed the app so much "why does a toothbrush ever need to be Bluetooth" I said, and now I laugh and smile to myself knowing it seriously helps.

...plus, my teeth got whiter? maybe that's the consistency from wanting to, or maybe it's the brushing, or some combination there of, but I'm not complaining!

I'm using the same amount of time and less effort, and getting a better outcome.

Sometimes accessibility doesn't look like ramps and mobility aids (though that's SO important too!), sometimes it's making things easier by finding routes that streamline your everyday routine, and being kind to yourself and allowing yourself the grace to let change, remembering that yesterday or last year's 100% may not be today's :)

Love you all 💕

shoutout to people who have back and neck pain worsened by abhorrent posture that they keep trying to correct but cannot

You know what? I hate how most people think I'm 100% dependant on my mobility aids. Sure I hobble around with my cane and scuttle on my crutches, but I'm not helpless. They're so surprised when they find out I don't use them at home, or that they can hurt as bad as the disability itself, or that my dependence on them is a fluid thing and changes day by day. We have this idea of how disabled people should be— bound to their aids, miserable, defenseless. These ideas only helped me reject the idea of something wrong with me longer, because I didn't look like those people. Most of the time now, I use my aids when I don't need them just because I feel like I have to look "disabled enough" for people. We've built expectations for disabilities, which is funny, cause you couldn't have picked a more unpredictable thing.

I don't expect everyone to be educated, there are so much more pressing things to worry about, but when you have a friend or family member that's disabled, the least you can do is glance at a few resources online or ask them about it. I'm just so sick of family treating this like a big deal, or nurses holding on to me like a toddler still learning to walk when I need to get on a scale, or co-workers treating my cane laying around like a reverent item i will strike them down for disgracing. It's a piece of shitty metal y'all. I don't have a sliver of trust for that thing. Complaining about how cheaply made a lot of aids are to be priced expensive is a whole other post.

I'm just saying, if there was an immediate danger, you won't see me struggling to get away. I'll have already thrown my cane at them and ran. Yes, I have a disability, but I am not weak. You think these beefy arms are for show? You think this hunk of metal I lug around is soft? You think I made it to the end of the day fighting tooth and nail just to sit down and die? I'm fucking feral, fight me.

Since i was born i was absolutely unstoppable, i ran and jumped and played, i had energy to dance and fight, i went swimming every week for a year, the next 3 years i did artistic roller skating, then i practiced karate, my legs started to hurt and i couldn't run as many laps as my friends... two years later i was one of the best in my school's the volleyball team, my height and my strength were my best assets... then i couldn't jump as high, i felt like fainting mid-game.

In 2019 i was diagnosed with hyperlaxity, and then with elher danlos, i can't run for more than 10 seconds, i can't crouch and breathig hurts sometimes, if i stand up too fast I'll faint and if its too cold I'll fall asleep, all my joints pop when i move and there's not a moment when my body doesn't hurt, i never want to get out of bed.

People tell me im lazy, that i must endure cause everyone has pains sometimes, they tell me to stop complaining that my back hurts, that I'm weak for not being able to bear a little pain.

They don't understand that it hurts ALL day, EVERY day, that im complaining because right now it hurts more than a while ago.

They don't understand that if im playing its not because i was making up my pain a while ago, its because i can't just live sitting down, I'm playing and my back hurts, and my legs feel weak, and my breath is ragged and i feel like fainting, but I'm happy because i finally found the energy to play like i did years ago.

I'm not angry at the people who tell me i should just try harder, I am ENRAGED.

How DARE YOU tell ME that I'm not trying my hardest? that "it's not that terrible" you dont KNOW HOW IT FEELS TO NOT BE ABLE TO DO THE THINGS YOU LIKE, WATCHING WITH ENVIOUS EYES AS YOUR FRIENDS DO THINGS YOURE NOT EVEN ALOWED TO TRY "just in case", WISHING THAT YOU STILL WERE THAT LITTLE INVINCIBLE KID WHO RAN ALL DAY IN A T-SHIRT AND SHORTS NOT HAVING TO WORRY ABOUT THE TEMPERATURE OR THEIR JOINTS.

the little kid who still believed when they told her she was strong, the little kid who didn't feel like a withering flower, like she was rotting, her body decaying with every passing day.

You don't know how it feels. Don't pretend to know how it feels.

EVERYTHING FUCKING HURTS