#hypermobile problems

[neuroticboyfriend]

the desire to stim by moving your joints in ways they shouldn't move vs the looming threat of injury from doing so

[sonny-ray-of-goth]

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?

[helios-hawk]

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

[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?

[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!

[milkcritter]

y’all i came across the most amazing art on facebook this morning

im in a bunch of EDS facebook groups and an artist posted a study of their hand in the Signature EDS Position™ and i’m obsessed

i remember taking a figure drawing class and doing drawings of our hands for homework. the assignment was to put your hand in an “interesting position” and draw for 6 hours. During critique, my professor had me put my hand in the position I drew it in to check my proportions, because it didn’t look like a possible position to her. she was shocked when i put my hand there with ease.

credit to aislin.sparrow on instagram

this study is not just incredibly technically well done, it shows abnormality in figure drawing, something we don’t get much of

it’s so nice to see your body in art. so much love to this artist and any disabled artist out there

our bodies are worth drawing

[mothwiingz]

finding out that non-hypermobile people don’t get food stuck halfway down their chest constantly is baffling to me. like wdym you can eat a sandwich and it doesn’t just decide to stop there

[broken-bodies-club]

One of my favourite things about being chronically ill as a young person is sitting in the rheumatology waiting room as the youngest person there and then having all the old people giving you dirty looks. Yes bitch I got the disability fast pass.

[autispec-hours]

every day i get out of bed and a joint cracks in a place i didn’t know that joints existed

[neuroticboyfriend]

to my fellow hypermobile ppl, if you are turning while standing... do not simply rotate at the hips. it can fuck up your knees and hips.

instead... lift up the foot on the side you are turning towards. rotate that leg AND your torso towards the direction you want to go in. put foot down. bring your other foot in line with the first foot. make sure your feet point straight when you do this.

tada. you have turned more safely. if anyone knows a better way to turn please add on. may your joints not crumble.

[gayybastardd]

some bitches really just be out here walking. casually. no dizziness, their leggies don't even be hurting, NOTHINGGG???? not fair, i'd like a refund. my ex said i walk like an awkward duck. the worst part is that she was right.

[carmillatism]

hello! i hope this ask finds you well <3

i’m just looking for a bit of advice and i saw one of your posts about being disabled so i figured i might ask;

(to preface: i am not disabled) but sometimes my right hip does a weird thing and hurts for a bit on and off and i can’t really walk (my hips have always been weird - they pop really easily and hurt if i lay down on them for too long) and i was curious if you might have advice on how to deal with that? (though granted i don’t actually know what kind of physical disability you have so this might just be headed out into the aether)

(sorry if this is the wrong blog to ask!)

hello! sorry for getting back so late; i had school! and yes, you came to the right place! want to preface this with a disclaimer by saying i'm not a professional, and i recommend you talk with a doctor if possible. i also recommend doing your own research as i don't know you like you know you!

that aside, i have pots and hsd, both which cause me chronic pain. hsd, or hypermobikity spectrum disorder, causes me chronic joint pain. and good for you, my most common place of pain is in my hips, so i have a lot of experience with what your describing.

my biggest recommendation, other than talking with a doctor, is for you to try and stay off of it when it hurts. you can also apply heat or cold (with an ice pack, heating pad, etc.) to the area that hurts. that usually makes me feel better. i also recommend taking otc (over-the-counter) pain meds. take the dose it tells you to take, and that will usually help soothe the pain!

i also recommend that you keep your mind open to the idea that you could be disabled. if this pain is pretty common for you (as in it happens a couple times a week) and has lasted for at least 3 months with common occurrences, then it's considered chronic pain. if you have chronic pain, you are disabled. ofc i don't know you and can't say for certain! but keeping your mind open to the idea can help you more easily make that transition in the future if you are diagnosed with a disability or your symptoms become disabilitating.

i also recommend getting a cane if possible! canes help a lot with getting weight off of the leg that's hurting, thus allowing the pain to decrease. do not worry about "faking" being disabled. if you need a cane to lessen the pain you feel whilst walking or to support your walking, then use it! you would use your left (opposite of hurt leg) hand for the cane. you don't have to get one, of course, but they are a pretty cheap investment if you get them at a pharmacy or online, and they are extremely helpful.

but again, i can't recommend it anymore for you to see a medical professional. what you are describing sounds similar to my experiences with chronic pain, plus having pain flareups for seemingly no reason pretty consistently along with your hip feeling out of place or popping out of place, sounds like something to bring up to your doctor. based on the limited symptoms you gave, i recommend looking into heds, hypermobile ehlers-danlos syndromes (plus the other versions of eds), or hsd (which is what i have. both are hypermobility from a connective tissue disorder that causes a slew of symptoms, but a major one is joint instability and chronic pain. hsd is sort of a different part of the spectrum of eds, or just a different but similar disorder (scientists really don't know)).

some good medical websites that i use a lot for info on my own health as well as my medical science interst are the cleveland clinic, the nhs website, and mayo clinic. these have digestible pages of information about many different disorders and problems.

i also recommend keeping a list of your symptoms that don't seem entirely normal or healthy. also, keeping a journal of your pain flares and describing when and why it happens can help you track it and see if it worsens or gets better. i also recommend using these to look into possible disorders that you may have. advice given for any type of similar disorders with symptoms similar to yours (or that you might have) can greatly benefit you if you want more advice!

if you have any more questions you can dm me, use my ask box again, or ask someone else for another point of view! talking about it with many different people can give you many different and helpful perspectives that can help you figure out what's going on. i wish you all the best!

[lifeonkylesfarm]

what the hell are they talking about when they say that sitting up straight should be/is comfortable. it's literally the most uncomfortable fucking pose. like yeah my back hurts less when it's in the position it's apparently supposed to be in, but it's generally just uncomfortable and the absolute worst. honestly I think most positions are not comfortable anyway. Is this just me lmao. or is this like a hypermobility thing or like just normal. I mean like idk how it could be normal because people actually think sitting up straight is comfortable so it must actually be comfortable to people ?

[clown-bitchh]

i did A LOT of socializing today. it was really weird and way past my comfort zone. but i need to push past that zone and do stuff. lowkey proud of myself. one of my friends that i hung out w/ is also proud of me :)

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i also got to try a tattoo gun. and like i thought, my hands have gotten too bad :/

[reptile-garden]

Fellow chronic pain humans. You ever been in so much pain, that your body doesn’t register it correctly and you just start crying over the smallest thing?

I was trying to cook eggs and have been blocking out the pain in my knee the best I can, I somehow messed up, and they stuck to the bottom of the pan ever so slightly.

Just enough that it made it a bit harder to flip an omelet on half.Something that would normally never bother me, something that I’d be like “Hu guess I didn’t grease it enough this time. Weird.” This time it had me crying. Couldn’t figure out why for a moment, then I noticed how badly I was limping and compensating for my right knee and it clicked.

Is this my new normal?

I had a few cases of breaking down in tears of frustration and pain before my wrist and elbow surgery, but it was so long ago I had forgotten how bad it can be.

I had my MRI today so I really hope it shows something because I’m so sick of this. Part of me thinks it’s just the HEDS causing issues, and the scan won’t show much, but part of me really hopes there’s something there that they can fix.

Chronic pain scale wise I’m a 7/8 out of 10 today. Been living at a 7 most of the week. Before my knee got worse I was at a 2 to 3 daily, sometimes a 4.

This is what I’ve been using to rate my pain

1. Pain barely noticeable

2. Annoying and may have occasional stronger twinges.

3. Pain is noticeable and distracting, however, you can get used to it and adapt.

4. Can be ignored for a perfod of time, but is still distracting.

5. Can't be ignored for more than a few minutes, can manage activities W effort

6. Interferes with normal daily activities. Difficulty concentrating.

7. Dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships.
Interferes with sleep.

8. Physical activity is severely limited. Conversing requires great effort.

9. Excruciating pain. Unable to converse. Gryin out and/or moaning uncontrollably.

10. Unspeakable pain. Bedridden and possibly delirious. Very few peopk will ever experience this level of pain.

[strugglinguist]

“Sorry I’ll just be a second. My left knee subluxed, and I need to lay on the floor for like two minutes and think about life.”

Totally normal things one says to their partner when they have hEDS. 😂