#hypermobilty syndrome

[crippledpunks]

i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

[audhdnight]

Just thinking about the common experience of late diagnosed disabled people of “the normal amount of pain is none” and how we’re just supposed to know that despite *some* level of pain being OUR normal for our entire lives, even if it’s usually not super bad it’s just always there.

Thinking about how, when I told my mother this, she asked me “So what’s hurt?” Which is very different than “what hurts?”

I looked at her, confused. “Nothing is hurt. I just hurt.”

And she says “But where do you hurt?”

“Well, right now it’s my stomach and my ankles-“

She cuts me off. “So you twisted your ankle?”

“No,” I say. “My ankles just hurt. I’ve been walking today.”

Now it’s her turn to look confused. “Just walking doesn’t make your ankles hurt. You must have sprained them or something.”

But I shake my head. “Nope. This just happens on days when I walk more than a little bit. My ankles hurt first, then my knees by lunch time. And if I don’t take a nap and stay on my feet all day, my hips will be hurting too.”

“Oh.”

Joint pain is my normal. Sometimes, if I barely walk all day, the ache in my ankles is barely noticeable and doesn’t affect my functioning because I’m used to it. If I do what most able-bodied people would consider to be a “normal” amount of walking, almost all of my joints will hurt by supper. If I have to wash dishes or run any errands, I’ll hurt so bad I can’t walk for the rest of the day.

Then there’s the chronic migraine attacks. I used to have them multiple times a week as a child, and no matter how I explained myself, nobody ever understood that they weren’t just headaches. I experienced those too, and frequently, but they were not the same. Thankfully, at the age of eleven, I found an article explaining migraine triggers. I was able to identify a few of my own triggers, and the frequency of my migraine attacks reduced to maybe a couple a month. For a few years I was basically on cloud nine, I’d never experienced such a lack of pain before and it was so freeing. Unfortunately, migraine is a progressive condition, so the attacks have gotten more frequent over the years.

And then there’s the “random” pains. Some mornings I wake up and my stomach hurts. Or my chest. Or my back. These are just things I have to live with, because my body’s connective tissue is… well, for lack of a better word, faulty. And I never knew that other people didn’t experience this, because how could I? We never talked about it. Sometimes I’d hear people complain about back aches and just assume they were like mine. Of course, I knew that injuring yourself could cause muscle aches, obviously. But I just assumed that *most* of the time, other peoples bodies hurt like mine did. I didn’t realize that humans aren’t supposed to “just hurt” without a connected incident.

And when I try to explain this to able bodied people, their response is always the same. “Well, everyone’s back hurts sometimes.” “Everybody gets headaches sometimes.” “You’re not special just because you’re too lazy to walk. I still go to work when I don’t feel good.” And no matter how many times I try to say that No, you don’t get it, I *always* hurt, they still brush me off and dismiss me.

[permanently-sprained-ankle]

“I don’t think I’m disabled enough to use this mobility aid”

Ok so what if that’s true?

If you have a health condition that impacts your ability to function in one or more life areas, you’re disabled. If you’re disabled, you need help to live your best life.

Let’s say you choose a cane as a mobility aid, because you need help. If the cane doesn’t end up helping, then you don’t need to use it!

And so what if the cane only helps a little bit? It still helps and you deserve that little bit of help.

And so what if it only helps on some days? Dynamic disabilities are real and you don’t have to use the cane on the days you don’t feel like you need it.

And so what if the cane isn’t really helping you right now, but it’s helping you prevent injury or degeneration or fatigue? Bestie, that’s still HELP. I’d much rather you be less disabled and not rely on your mobility aid, than you damage yourself until you feel like you’ve earned it.

And so what if you don’t feel like the cane is really helping your disability directly, but it’s still useful in signaling to others that you’re disabled? That’s helpful and you deserve that.

If you’re disabled, you don’t need to be “disabled enough” for a mobility aid. If you’re disabled, you don’t need to rely and depend on your mobility aid in order to use it. If it helps mitigate you disability, fucking use the mobility aid.

[localpissenthusiast]

ok yeah i have a debilitating medical condition that causes chronic & generalized pain, mobility issues, autonomic nervous system dysfunction and frequent subluxations BUT. i can touch my thumb to my forearm so. a win is a win

[helios-hawk]

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

[ryegarden]

little PSA for anyone struggling with undiagnosed fatigue or long term fatigue without a visible cause - if you've found similarity with conditions like POTS, fibromyalgia, or chronic fatigue, or if you have chronic pain, heavy menstruation, difficulty focusing/brain fog, memory and concentration issues, intolerance to exercise and/or an abnormally fast heartrate/heart palpitations. Get your ferritin levels checked 👍 because it might be non-anaemic iron deficiency! It's only fairly recently that scientists/doctors have seen and taken note that low ferritin (carrier of iron in your blood), even if you have normal iron levels, can cause serious health issues often misdiagnosed. It's treatable with high level iron supplements!!!

Guidelines (at least in the UK) state that normal levels are 5-204ug/L but in reality, anything below 100ug/L can lead to really awful symptoms like those described above. It's more common in people who menstruate, especially if you have heavy periods (also other types of blood loss like blood donation or gastrointestinal issues), as well as people who are vegetarian, and consume a lot of products that inhibit iron absorption (such as tea, coffee, cow milk, and egg yolks) or have a condition that impairs iron absorption such as coeliac.

I normally don't make posts like this but I have had these issues for the past eight years and only just found that this might be the source. It's underdiagnosed and thus undertreated, and so maybe the knowledge will help someone else out too 👍

[aelianated-star]

Buckle up folks because this is a long post -

Tips for newly diagnosed dysautonomia patients:

- Drink a lot of water (so much water guys. Especially if you have hypovolemic types of dysautonomia, like hypovolemic POTS, it’s crucial)

- Keep up with electrolytes/ salt intake. Vitassium makes salt pills, chews, and tablets. I personally prefer the tablets because I can just suck on them for a while, but I know a few people who prefer the pills.

- Compression socks help, A LOT! One major component of dysautonomia, in general, is blood pooling (which can greatly increase your risk of fainting). The compression/construction helps blood flow and return back to your heart and brain

- Your disability(s) are valid, even if you don’t pass out/pass out a lot!! Only about 1/3 of people with POTS (one of the most common types of dysautonomia) pass out! And of those, few pass out regularly/daily (such as myself). No matter what, you are valid! Even if you’re undiagnosed, even if your case is “mild”, even if you manage it well without much help; you’re valid!

- Especially for those of you who are just being introduced to disability (likely because of long COVID), it’s okay to grieve the life you used to have/planned to have. You can live a wonderful, full life with these conditions (and other conditions), it just may require more accommodations than you anticipated!

- DONT BE AFRAID TO ACCOMODATE YOURSELF! Seriously, use mobility aids, get a 504/IEP, and make your space(s) accessible to yourself! I use forearm crutches for short distances, but because of how severe my dysautonomia is, I’m reliant on a wheelchair (with someone pushing me/motorized aid) to go more than a couple hundred feet/longer (or anything that requires standing for more than 5-10 minutes).

- Get a pulse oximeter or watch! Certain types of dysautonomia may cause lowered oxygen (hypoxia) because of a lack of available blood. It’s extremely important to monitor this and make sure you’re aware of your oxygen levels!

- Find community! I personally love using “stuff that works”. It not only lets you crowdsource for information about medications or treatments, but lets you message other people with the same condition(s) as you.

- If you feel like something is wrong, please talk to your doctor. I know it’s scary, especially if you have medical trauma/PTSD on top of these conditions, but it can literally be lifesaving. I noticed a sudden uptick in chest pain and casually mentioned it to my doctor. Sure enough, we found I have two types of arrhythmias (p-wave inversion and flutters) Now I’m pushing for genetic testing to see if my diagnosed EDS is vEDS/cvEDS

- Don’t be afraid to start and try medications! I’ve tried numerous medications and haven’t found anything that works quite right yet, but that doesn’t mean I won’t :). And some of you may not need medication! You may be able to manage with lifestyle changes, or IV therapy, which is great! Do what works FOR YOU. Everyone is different!

- Rest days are productive! Your body is working really hard to keep you alive, it’s okay to take a break! Take care of yourself, really, it’s okay to conserve spoons.

[l00ney-m00ny]

I dont make many hEDS posts now because I'm home-schooling and in a much better, non-toxic environment surrounded by my family and supporting friends, but I just wanted to let you know that I have been fretting for the past 2 months about possibly needing a cane in order to properly manage pain while walking because I get very bad back, hip, and knee pain mainly on my right.

Anyway, I was fretting and fretting and today I finally worked up the courage to ask them for one and my mum immediately goes online and starts asking which one I think would be best and my dad started looking up cool handles and grips for them and I couldn't be happier honestly.

I am so lucky to have them and I guess just wanted to let everyone know that everything is better and that it can get better, even just mental health wise ( though I find that if your stressed mentally than your physical state can get worse too), it can help a lot If you're just get better friends, or stop hanging around others who don't make you happy. I found that worked for me at least.

[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

[lifblogs]

Anyone want a Good Omens EDS meme?

[adhdbraingoburrr]

I love when my disability is disabling/s

[lesbian-aura-36]

Going out for a few hours and coming back with severe leg pain<<<<<<

[permanently-sprained-ankle]

If you’re excited at the prospect of having a disability aid, that’s a sign that you probably should get that disability aid.

[disagigglebilities]

Me, half asleep and stretching: Struggle, struggle, struggle

Me, blinks: Wait..

Me: I meant stretch, stretch, stretch.

Also me: ..eh, same difference

[seasickzig]

Hey, I have a scifi WIP I've been working on for a long time and during a recent (and ongoing) flare of what I'm almost certain at this point is undiagnosed hEDS, I've decided to give my favorite character (he's the tritagonist and already has a whole plot around him) undiagnosed hEDS as well. Any tips for writing it? I'd like it to be subtle enough in the first few books that only other people with EDS would pick up on it qnd have it as a headcanon, and then bam! Actual confirmed diagnosis later on in the series when it's least expected. Do you have any advice for accurately and respectfully writing a character with undiagnosed hEDS? Thank you!!

Hi! Thanks for the question! I want to preface this by saying that my current diagnosis is Hypermobility Syndrome, and I’m waiting to see a geneticist for an EDS diagnosis!

I think the best way to write an undiagnosed character would be to write about how they cope with their symptoms before knowing that what they were experiencing isn’t normal. I knew I was flexible and got uncomfortable easily long before I realized that most people don’t feel discomfort and pain after staying in the same position for more than five minutes! I thought everyone felt similarly to me and just dealt with it a lot better.

Some things I did to cope with my symptoms before realizing they were abnormal were:

1) Ignoring it until I literally couldn’t anymore (leaving me stuck in bed/on the couch for multiple days after)

2) crouching/sitting on the ground anytime I came to a stop

3) Shifting my weight and swinging my legs while standing still

4) leaning on counters, walls, posts, anything that could get weight off my legs

5) taking frequent breaks, especially in the shade. One of my most obvious symptoms prior to diagnosis was heart issues and heat sensitivity!

6) stomach problems, random bad reactions to food that never upset me before, and maybe never will again!

7) Getting extremely fatigued after “simple” tasks like grocery shopping, or even cooking a meal. I need about 10-12 hours of sleep to feel rested.

8) never feeling comfortable! this is my main symptom that I struggle with. I can’t sit, stand, or lay in a position that is comfortable for more than a few minutes. It makes sleeping difficult because I need many pillows to support my body.

Some other things that you could include that I didn’t notice in myself until after doing research are:

1) thin/see through/flexible skin. A lot of people with EDS bruise or get cuts easily because our skin is very fragile!

2) scarring. People with EDS are more likely to form hypertrophic/keloid scars. Thats not always the case, I’m someone who scars very well, but I’m kind of an outlier there!

3) Low reactions to pain medications. Some people with EDS dont get relief from advil/tylenol. And many people with EDS have a high tolerance for local anesthetic! I’m good with general anesthesia, but if I need numbing shots at the dentist, i need more than 4 to feel results.

4) eye issues/migraines. Since connective tissue runs through your whole body, it can also impact how your eyes focus, and your pupils (light sensitivity). Many people with EDS also have Binocular Vision Dysfunction, where our eyes don’t work together to focus on things correctly. That can lead to migraines, car sickness (i get carsick just walking around without glasses), and anxiety around driving (especially at night and on the freeway).

I hope this helps!! Good luck with your book!

[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 ?