#hypermobile problems

[eggsistential-bread]

My joints have been killing me but the Perpetua Brainrot eats me whole

[hypermobile-culture-is]

Hypermobility culture is having the urge to stretch but stretching does nothing.

No matter how you twist and turn.

[gracethyomen]

Happy First of May!!

Hello! May is EDS (Ehlers Danlos Syndrome) awareness month! As a person with suspected EDS and with chronic symptoms, this is a very important topic to me. EDS is hard to diagnose, and many patients fly under the radar of healthcare professionals which can cause them to suffer lack of treatment and forces them to live with their painful symptoms.

More Information about EDS and associated variations has been attached below and the infographs were originally found on an instagram account that I follow at the username the_chronic_chronicles

[enjolrashisace]

I've received my HeDS diagnosis

After 23 years of struggling and medical gaslighting, my condition and struggle is finally recognised and I'll be able to get everything I need. I'm so happy I could cry

[crippocrates]

Getting an accute health issue ontop of chronic ones is absolute BULLSHIT. You would think you’re already dealing with enough and then boom another cause of fucking pain to take care of. Never goes away quickly either. Happens when you have important stuff planned for the foreseeable future and you can’t catch a break.

I fractured my leg doing sports and it’s only been a week and I’m losing my mind. Three more weeks to go at least. I’m okay walking with my crutches again, I’m used to it. I just want the constant overstimulation from the pain and the orthosis brace and the hassle of moving around to stop just for a moment. Resting is hard enough already and now there’s another layer making it more difficult.

It was supposed to be just badly sprained. I walked on it for four days before seeing a doctor and getting some x-rays done. As a chronic pain patient, acute pain is hard to recognize if it’s not severe or very localized or visible. The pain was a 4/10. Now it’s suddenly more like a 7/10. Don’t know what that would be on a normal pain scale, this is on my personal/chronic pain scale. Yk, keeps me up a little bit longer at night but I still sleep at some point. I take pain killers for it. I try to restrict movement. This is interfering with so much other stuff right now. I’m so frustrated.

[beenovel]

The most frustrating part of being diagnosed with hypermobility for me is the fact that I'm having to teach myself how to do everything again.

I'm learning how to hold my pencil in a completely different way, I'm learning how to engage my core and make sure my knees aren't going backwards when I go up stairs, I'm learning how to walk without letting my knees go backwards, I'm learning how to type and push buttons. Being constantly aware of everything your body is doing all of the time is exhausting and I'm understanding why kids who are learning all of this for the very fist time cry so much. I want to cry because it's frustrating and exhausting and endless and it feels like it will never end and I want to give up but I can't.

[dandelion-system]

The day a doctor hears me say ‘I am in immense amounts of pain. I would not like to sacrifice living a normal life, in which I go to work, have friends, and possibly meet a partner, to not be in pain.’

And then the doctor responds ‘we’re going to find you a way to live a normal life, where you can go to work, have friends and a romantic relationship. Because it is unfair that this thing outside of your control should dictate to you that you must now stay at home forever and miss out on joy.’

because I swear to god every doctor I see tells me to just do less? Hello?? I’m already doing the bare minimum! I would like to have options to do more! Not less! Diagnose me and support me, stop telling me to ‘slow down’!!

[disability-and-cats]

im so tired of always taking steps backwards in my healthcare journey cause things keep going wrong

[helios-hawk]

anybody else’s bodies just crackle like a glowstick all day

[mushroomwillow]

Still needs some adjustments but I made a thing for my thumb. Made of galvanized steel wire, theoretically less likely to rust/tarnish but we’ll see.

[hypermobile-culture-is]

hypermobile culture is thinking that everyone goes around in a mild amount of pain until age 19 and then. you learn.

^^^

[lost-spoons]

I use mobility aids such as forearme crutches and braces on my ankles and knees. The ankle ones hold up well (they're a wrapping type with a single point of velcro at the end of the wrap) and I've only had to replace them 1 time so far, but my knee braces have been replaced 3 or 4 times already, due to over working the velcro.

The type I currently use is a Moxita knee braces with side stabilizers. It does what I need it to do but needs to be replaced often. The reason for the velcro stripping that happens to them is because I have to take them off when I'm sitting or have my knees bent for a long period of time, and anytime I want to stand I need to put them back on.

I use the braces for patella instability. My crutches help to lessen the amount of weight I put on them, but without the brace stability, I can't stand without my knees buckling and the knee cap sliding out of place.

I refuse to get surgery for this as the issue will reappear over and over due to the genetic condition.

So, does anyone have any recommendations on knee braces?

[alexei-home-fromthewar-at-last]

Have I ever told you how much my joints SUCK?

[inclusion-matters]

I don’t post personal stuff very often but I’m hoping to find people with similar experiences. I’m 24 and I have hypermobile Ehlers-Danlos syndrome, and as I’ve gotten older it seems like my joint dislocations and subluxations have gotten even worse, to the point they’re just falling out of the socket at random. I’ve had to put one shoulder back in twice today as well as my other shoulder and both my hip once. I’m also am falling progressively more and more, seemingly from loss of balance. I’m curious to know if anyone else has some similar experiences as they’ve gotten older. When I was little my bones never broke, and I got weird injuries and sprains and bone bruises but things didn’t pop in and out nearly as much, although they did a little. I was also really active and did ballet so I think that helped stabilize my flexibility until my pain got too bad for me to be able to dance. Now you can’t even really feel cartilage in my joints. Hopefully someone with similar experiences sees this post so I feel less alone!

[starful-emporium]

for any hypermobile folk thinking about using a mobility aid: I've been using a cane occasionally for the past few months and I've had to replace it.

So my two tips if you're also hypermobile and needing a cane:

Get one that has a height option shorter than you need based on your height. This is most relevant if your wingspan is more than your height.

Pay attention to handles! Offset has been best for me, but there are also options designed for Carpal Tunnel that are also good for hypermobility (though more expensive)

The more common handles are called derby handles and look like this

There are a few ways to grip it and they all messed with my wrist/finger joints in different ways

Putting any pressure on the cane just went directly to my wrist--and I already draw and type a lot. I actually dislocated my knuckles a few times while holding it, and now I consistently dislocate a few joints that I didn't used to 🙃

And the new one has a handle like this

Which allows me to hold it like this

It's much more comfortable and easy to walk with.

The other problem I've had is the height. Every listing will give "suitable heights," but for hypermobile people, height isn't the most accurate measure. Hypermobile people often have Marfanoid features, which includes longer arms that average. The grip of your cane should be at the crease of your wrist with your arm relaxed.

The first cane, although made for 5'4 and taller, was still about 2" too tall for me (and I'm 5'6!). Might not seem like much, but it made me bend my wrist more than I should. The second cane I got had to sacrifice folding for more height options. The shortest adjustment is 29" and I have it a little taller than that.

Hope this helps someone! Mobility aids can be life-changing, but it's super important to know how to find the right kind for your needs.

[enjolrashisace]

I think some of y'all can relate or at least understand

Wednesday I went to see a new physiotherapist as I moved and yeah I'm not travelling to a different city for an appointment.

For the first time in a long time I and my pain was taken seriously. He listened and didn't just tell me to train the already overworked muscles.

I haven't had a half decent physiotherapist since 2014 because he quit.

I hate human touch but I wanted to kiss that man so bad like omg I love you so much please take my unborn child as a sign of my gratitude