So to start I’m not diagnosed with eds (no I’m not looking for a diagnosis here I know it’s not allowed) I just highly suspect I have the hyper mobile type due to various things, joints that bend too much, lots of stretch marks, easy bruising etc and of course chronic pain.

I started getting pain in my knees as an early teen. These days my knees hurt, my back hurts, my neck and shoulders hurt on a daily basis as well as other joints if I over use them. Except whenever I bring it up to people they say it’s normal. I’ve been told everyone get aches and pains, I’ve been told it’s because I don’t exercise enough or I’m not used to it which I know is rubbish as I’ve been doing the same exercise routine for almost a year now and squats still hurt my knees. Then I also get told it’s stress or I’m being a hypochondriac.

I mean I do have severe anxiety that focuses health but I’m also in pain daily. I don’t think it’s normal to have chronic pain like this at 24. I’ve been scared to bring it up to the doctor as I feel like they will just brush it off as “nothing” but I’m getting tired of being achy and tired.

Don’t wanna get too excited but I’ve got some good news 🤞🏻🤞🏻

Ive mentioned a few times on here that I’ve been working as a bar tender for almost a year and tbh , I’ve done a lot better than I expected. It’s a job only a few hours a day, I don’t do any heavy lifting etc. Anyway due to personal reasons I’ve decided I’m gonna be moving to a new city around 6 hours away, to do that I had to find a job.

In the past the best job I had was at a call centre however at that time in made my pain worse due to the fact that I wasn’t educated on my own condition. I didn’t know what accommodations to ask for, I didn’t take meds, I lived with ableist family members who caused me to downplay my own needs etc. That’s now no longer the case.

Anyway I decided this week that even if it means the move takes longer, im not getting another bar job or another job that isn’t EDS friendly. I know ill damage myself beyond repair if I keep up physical jobs.

Today I woke up to a call inviting me to an interview Wednesday, this is literally my dream job EDS wise. It’s full time at a call centre so no physical work , the pay is great compared to my old job, it’s in the city centre so easy to travel to and once the 5 weeks training is complete there’s the option to work hybrid as much as I want.

I have past experience and I do have a lot of relevant qualifications but I didn’t believe I would get this lucky. I think I just may have.

Gonna spend the whole of tomorrow revising interview questions and stuff, I don’t just want this job but I NEED it. To go from full time bar work to a job with no physical labour - this could be a new life for me.

Please send me positive vibes and luck , here’s to a future with less pain and being more abled (hopefully🤞🏻)🥰

I am not diagnosed, but I have had life-long symptoms and my mom got diagnosed with EDS last year. My grandmother and aunt also have signs. My physical therapist suggested I see a geneticist, but when the geneticist in my area emailed me back she said the evaluation and testing would be close to 600$!! I'm just starting my career, and so one part of me thinks I should just carry on with my physical therapy exercises and live in the mystery, but another part of me thinks it would be worth it to know just in case other complications come up later (like what my mom went through).

I know that people go through surgeries and all sorts of things that are way more costly too... why is getting diagnosed with/treating health conditions so expensive?!

Imagine this rant as a pus filled boil that has been building up for the last 2 decades. I haven't really been able to get all this out uninterrupted. It might not make sense. It might seem harsh at times, but I need to say it for my own mental health.

I have no idea how I got this far. I am a young adult, but below 20. I have clEDS based on clinical presentation, but I've never been able to get a test. I feel so fucking lonely.

I've tried joining in person and virtual (as I need to see faces) groups. I can't relate to any of them, we all have different types (EVERYONE had hEDS. If I tried to speak about an issue, nobody would relate, and vice versa) and i have a lot of added health issues. I've tried joining non-health groups, but I can't get to them. I've tried getting help from social services. I was told 5 months. This is month 17.

I've tried getting an education. A job. My conditions always fuck it up. I can't even leave my home most of the time.

My symptoms are hell. Pain started at 5. Was called a liar despite it taking my childhood. I had no treatments. No sympathy despite needing to relearn how to walk at 5 and 8. Finally referred to a pain clinic at 13. Treated horrendously there. Last year I went to a pain management team and they told me they were officially giving up. There's nothing more they can do.

I'm constantly getting worse too.

I'm on a trip right now, and the only reason I'm not in a chair is my ramp hasn't been put in at home, but I can't do anything because of that. This is the last time I'll be outside my house without a wheelchair. Knowing that is horrific. There's not even much to learn about for cleds. It hasnt been researched much. I don't even know what my life expectancy would be, but given the way I've gone from daily walks and full time education to barely able to get up the stairs despite getting healthier over the last 3 years, I don't think mine is good. For context, on the 7th of August 2021, I walked 17000 steps and needed 1-3 days to recover. I cannot safely make 5000 anymore without needing time to recover. I cannot get 1000 every day.

People assume it's my weight, but the only reason I'm overweight now is because 7 years of doctors missed I'd been prescribed something at 33% of the correct dose. Nobody takes me seriously.

It's even worse because all these other conditions are getting so much sympathy and care, yet I'm just here. I'm going to suffer forever. An indefinite amount of time. I don't even get help for it. God I wish I could have palliative or quality of life care, but I'll never be able to.

Hell, I can't even get fucking therapy. This is year 9 on the list. I can't afford private. All i get is more medications.

I'm only here for the sake of my family, pets and friends. And I don't even see them most of the time. And because I'm terrified of the alternative. I'm terrified of the concept of nothing for 999999999999999999+ years then thats not even 0.01% of the time that I'll be not-existing for. I'm not a risk to myself. Nor will I be. I just think it would have been easier if i wasn't here. Not that thats going to happen soon, hopefully. I'm terrified of dying and idek when I'm likely to.

I wasn't even meant to be born (long story, but it's not emotions saying that, its true) and despite being wanted, I wish I hadn't been. What the fuck is this life good for? I can't experience shit. I can't do shit. I can't even learn shit without pain or money. I just get to lie here and watch the world fall apart.

There's not even any hope as all the services where I am are for cEDS and vEDS, and then all the campaigning is for hEDS. I understand that'll help a lot more people. Logically that's right, and i will alwaus support getting those services. Anyone with those types deserves all the support they need/want.

I just wish once. Just fucking once. There'd be something for someone like me. Some sort of support. And then I remember I probably wouldn't be able to access it if there were because I was horribly neglected by a hospital and struggle to go near them. Even if it was something like make a wish for adults as opposed to eds specific, I wish there was something to make me feel better for a bit.

And not to mention the medications. I don't mind taking medicines, but if I don't take mine, I become an utter mess. I become practically paralysed. My heart pounds. My emotions go crazy. I have outbursts. I scream. This would be fine, as I'd be on my medicines all of the time, except every month without fail my pharmacy fucks it up.

Even my family members who have eds too can't relate to me as their symptoms are comparatively mild. Some pain (managed with low dose meds) and just being careful. Not whatever the fuck is going on with me.

I can't even keep friends, and the few times i have I've constantly worried they'll see me as a burden, or move on as we generally have to text.

I've even tried to make a difference and help people but humanity is literal shit that only cares about power. I can't get anywhere in my state.

It hurts more because i was just fucking unlucky. I've always been unlucky. There's no reason for any of this to happen to anyone. No reason for it to happen to me. We joke about blaming my parents since they gave me genes, but really there's nobody to blame. Apart from when doctors have been negligent, of course.

Anyway. Rant over. Feeling a bit better now that's off my chest. Feel free to leave advice if you have any, I promise i don't bite despite what this ramble may suggest

Hi there! I tried to squeeze everything I could into the title, but for context, I travel frequently for work and occasionally outside of work. When I say “travel,” I mean usually two flights to the destination, a few very busy days there, and usually two flights home. And of course, any travel hiccups along the way. I’m realizing that every time I travel, I do great at maintaining energy while I’m traveling and then just collapse for 2-4 days once I get home. I’m wondering if any other frequent travelers have any tips or tricks for managing and/or preventing that fatigue? Currently, I’m on day two of post-travel exhaustion all the way to the bones even though I took yesterday to just meld with the couch. I try to build in recovery time, but my body currently seems to be demanding multiple days for that and that’s just not realistic when it comes to requesting additional PTO all the time.

I'm feeling a little sick today with GI issues, some sweating/chills, and brain fog. The frustrating part is I can't actually determine whether I'm sick or experiencing more intense chronic health symptoms. It's like playing a bad puzzle game where you have to figure out the likelihood of being sick versus symptomatic. "I'm already having a flair up of a bunch of conditions BUT two coworkers called out sick today so maybe I'm sick, BUT I haven't been around those coworkers in a week so it could be symptoms, BUT I've been in the office so maybe"...and on and on. I took a half day because I don't want to get other people sick if I'm contagious, but I don't have a ton of PTO and could function enough to make it through the day. It's so exhausting just trying to figure out what's going on, before even getting to the part where you figure out how to feel better.

My chronic fatigue is bad between 12pm-4pm I could fall asleep at any moment and it’s hard to control. What are you guys doing to help you through your chronic fatigue? I’m also ADHD so I’ve been on stimulants a few times but they trigger my POTS so I can’t do those anymore.

Hello everyone, I was diagnosed on the hypermobile spectrum which I came to realize after a labral tear injury.

The labral tear is in my right hip, caused from repeat injury from dance. The labrum acts as a gasket, and creates a suction that aids stability. With a tear, that suction no longer exists. For us hypermobile people, that creates a double whammy— the femur no longer has its innate structural integrity and the ligaments can’t be relied on to provide that! Proprioception ceases to exist.

So my struggle is this— while I’ve been able to manage the pain via acupuncture and certain exercise, the lack of stability really plagues me. It certainly inhibits my everyday movement because I can’t “imagine” where my femur is and feel very unstable. I have a very hard time activating the right muscles because I feel like all my muscles are constantly gripping to stabilize rather than working in harmony.

How do people deal with the lack of stabilization? I wonder if surgery could help to bring about the stabilization I so desperately want. Has anyone had hip labral tear surgery and was it successful in gaining a sense of proprioception back? Or has anyone felt that could achieve a sense of proprioception via PT and other forms of bodywork? My dream is to guide my muscles to find a sense of balance so they can operate as they would with the proprioception, but it’s very hard work. I would love to know what works for people.

This is crossposted in another hypermobile subreddit before I found this one.

Of course this answer is very personal and subjective but i am still looking to hear recommendations. I have tried numerous desk chairs (all with multiple cushion combos) in an attempt to find one that is both comfortable and supportive. I have both lower and upper back pain and find it really difficult to be comfortable in most chairs..

I’m skinny tall if that matters xD

Okay yall I work at a bookstore so I’m on my feet all day (I do get accommodations and sit whenever I can! But there’s only so much that can be done lol) Anyway, a couple of times now I’ve been standing and all the sudden I feel a tiny click in my left foot and instantly I’m no longer able to put weight on it. It usually lasts like 1 to 3 hours before I’m able to walk normally, and sometimes afterward it’s still sore. I finally thought yesterday to look up foot bones to try to pinpoint where I’m feeling pain, and the only thing it could be is the cuboid. As is always the next step, I google “hypermobile eds cuboid” and lo and behold- plenty of people with hEDS’ cuboids sublux! So now I’m looking into compression wear for that area and hopefully that helps. Have any of yall experienced this? Does anyone have compression recommendations that don’t go over the toes (I get claustrophobic if I can’t spread my toes lol)? This is so annoying smh

Hello all! Full disclaimer: NOT asking for medical advice, just looking for resources/information on the genetics.

So, I am not diagnosed (yet?) with any type of EDS, but both I and my doctor strongly suspect hEDS. It would just explain so much of my medical history all the way back to childhood and all my current symptoms. At the moment, I am trying to find trustworthy info (ideally scientific papers or similar) on how often eds can happen WITHOUT having a family history of it. My family definitely has some health quirks that might match up, but literally no one but me scores even a single point on the Beighton scale. And I have five younger siblings, so you’d think there’d be at least one other case than me!

Every website I’ve found says that eds can happen spontaneously, but I’m assuming it’s pretty rare. So really I’m just trying to find solid info on whether or not it’s even possible that I am on the right track here, or whether I need to try and find other explanations for what I’m experiencing. Thanks!

For those of you who, like me, aren’t supposed to challenge their GI system with much fiber - what are some good fruit+veggie combos for smoothies? I’ve done spinach and some other leafy greens but wanted to try and branch out a little!

My daughter is 6 and is being referred to a geneticist to try and determine if there is root cause to her medical issues. Her pediatrician specifically mentioned Ehlers Danlos, so I started researching it. She was born with a heart block and has a pacemaker, she has slow healing fragile skin, she experiences vocal cord spasms, and she has recurrent petechia.

The Reddit threads from the medical community are horrendous with most of the mocking those with EDS or doubting the diagnosis. This terrifies me as a mother.

If she does have EDS will she face a lifetime of doctors not believing her while mocking her in private?

I always hear about people's scores going down as they get older, because their joints go stiff. But has anyone had the opposite? For context, I'm quite young (somewhere around 20). I used to have a Beighton score of 6 and suddenly its 9. I was asked to do it again for a new doctor (I don't know why) and was quite surprised to learn I could do these things that I definitely couldn't do last year. Specifically, touching my wrists with my thumbs and putting my hands flat on the floor. My diagnosis is... complicated. For the sake of argument, let's say HSD because that's on my notes most, but not all of the time.

I know the difference between a 6 and a 9 doesn't really tell you anything about your needs or condition. It's just interesting to me that it went up.

Has anyone experienced this? Did anyone explain why it happens to you?

I'm dealing with what I believe are symptoms of dysautonomia and I don't know if just any regular primary care physician will be able to assess that and/or diagnose POTS.

I was diagnosed hEDS as a kid by my pediatrician which was ages ago and I'm too old to see that doc anymore obviously. What kind of specialist did anyone out there go to for things like a POTS diagnosis or help managing additional complications of EDS, or were you able to simply bring it up with your PCP? Thanks! 😊

context: my dad is in his 50s and doesn't understand that you don't have to be entirely unable to walk to be a wheelchair user :(

walking is growing increasingly difficult to the point where my hips dislocate or sublux multiple times a day where I'm at school, and i have pretty severe POTS symptoms that make presyncope near constant when standing and walking.

i don't know how to approach him about this, and im afraid he's gonna say no.

i have so many health issues that rack up the bills and im also scared about the cost.

please help:( i need help so bad or at least some support

Hey everyone! So I’ve posted on here a few times but I have hEDS type lll and I’ve had it my whole life but it recently started to take a toll for the worst and now my body feels like it’s deteriorating. Recently, after a quick hospital visit because the pain was becoming difficult to manage and my usual mobility aids were not providing enough support, I was referred to a pain clinic. I’ve done physical therapy in the past and I’ve heard of the term of pain clinic but I was never referred to one until now. I’m quite nervous and I haven’t received a lot of information about it only that the doctor there normally works with patients who have arthritis or other chronic issues but EDS isn’t something that is seen often for a pain clinic. If anyone has been to one please let me know if you enjoyed the experience or if you felt better afterwards or if you saw any improvement?

I’m mostly bedbound due to long COVID and a spinal injury, so I have to use a laptop. Recently, I have found my knees popping out of place after using it for a long period. Any thoughts on adapting the situation? Sitting up unfortunately is out thanks to the lumbar issue.

Also, like a lot of people, it seems, my hands get funky after using a phone or tablet, so using one of those is very limited.

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I've been using my MacBook Air full-time for work now for almost a year and my fingers are in such pain that I need to get a proper mouse and erganomical set up STAT. I'm only learning about EDS recently and I'm curious if others have this immense pain from using the touch pad and from typing?

The other posts seem to be about people's fingers burning from the friction on the touch pad, but I cant find any information about anyone getting pain from their fingertips, from them bending back repeatedly to type and use the touch pad.

Did you need a new keyboard as well? My hands are going to drop off at this rate.... soooooo painful. Unforunately the Logitech mouse I have my eye on is $180... so that's why I've been putting off getting one. Help! Are there any other things you do to help your EDS finger pain?

My hands and arms get cut up from minor brushes with abrasive material or sliced from sharp corners. Idk what to do today I didn’t notice right away but I bled on someone’s groceries because I must have brushed my hand against something abrasive. My entire dominant hand up to my forearm is covered in cuts and scrapes. Just kinda from interacting with the world cause my skin is so soft. I don’t even notice when it happens because I don’t even feel the pain. I’ll usually notice when I feel something wet. Can I wear gloves or something? I need to interact with a touch screen though as I do online shopping for people. Idk what to do.

i’m very scared. my physical health has taken a very steep decline as of recent. my neck is incredibly weak, i’m having a hard time swallowing, i think i have sleep apnea, a few days ago i was so weak that i couldn’t walk even with my crutches. my feet were just dragging on the floor. i am struggling to speak, i can’t do my chores. i want to go back to school but i can’t hold my head up long enough to read or do homework, plus i can’t walk between classes. i’m only 21, and i can’t imagine living another decade like this and it feels like nothing will get better. any kind words are appreciated.

I'm tired of waking up in pain. Not being able to lay down or sit up without something hurting. I'm tired of being tired. I'm tired of being drugged up all the time. I'm tired of grieving the life I had planned.

I'm tired of doctors not believing me. Im tired of the judgement. I'm tired of the guilt. I'm tired of the infusions and drs visits. I'm tired of the medication side effects. I'm tired of crying and thinking about the future that's ahead of me.

I'm tired of the nausea. I'm tired of the mucus blocking my airways. I'm tired of the infections. I'm tired of the skin problems.

The human body can only handle so much pain...

I'm tired. I just want to sleep.

Just learned that cracking your shoulders like cracking your nuckles isn't normal

Usually when I stretch my shoulders I'll do a slow but deep shrug, and the joints in my shoulders crack

Thought to ask my twin sister and a friend about it.

I thought it was a funny discovery

Genetic testing confirmed my VEDS diagnosis. I’ve never had any vascular issues just fit into the minor criteria like bruising and physical appearance. I also have hidradenitis suppurativa, which is mild. I’m flaring up right now with both under arms being effected. I’m scared this condition is going to further cause my body stress when I already have vEDS. I have on and off neck pain, back pain, chest pain since the abscess is compressing my nerves. I’m stressed beyond belief. I just want some encouraging words. I’m scared to sleep at night thinking I won’t wake up. I know there is nothing I can do in terms for my vEDS but my abscesses are so painful. I read online that HS is linked to cardiovascular disease and it freaks me out more. I’m 90lbs with low blood pressure so I think I’m fine for now? I am waiting on meeting with my therapist. I acknowledge there are other painful conditions too. I’m not trying to emotionally dump or anything, just wanted to hear some nice words perhaps.

I've been going to college online for a few years and I'm finally about to graduate this year! I love the company and owner of my current job, and they offered me a position when I graduate so I will essentially be going from a standard retail sales position to head of my department. However this also means I won't be running around stocking and helping customers anymore which was my primary form of physical activity aside from physical therapy. Personally I notice the pain the least either when I don't stop moving and keep the momentum or when I'm laying down. I'm sure some of y'all can relate but I am physically incapable of sitting like a "normal" person. Sitting up straight for even short periods of time just feels uncomfortable though I do try. I got a new desk chair and desk but I've still got max 10 minutes before needing to change positions. I also just generally get a lot of elbow and wrist pain but as expected, sitting at a desk for long periods of time worsens that.

Is there any office workers on here that had a product that helped them in office to be more comfortable?

Sidenote: I accidentally ordered a chair that didn't have bars at foot level 😔

So last night I was working on some notes and I often sit on my feet (I need a little extra height as my torso is short) and my ankle subluxed and I stupidly thought it was back in and walked on it. Yeah I had to go to urgent care I was in so much pain now to get to wear a fun brace!

I'm so unhappy with how I look and I'm desperate to lose weight but I find it so difficult! I feel like I've tried every exercise but I can't stick with anything because it either knackers me out or makes my joints hurt. Has anyone found anything easy going on the joints that's helped with weight loss? TIA x

New here and undiagnosed. I’ve suspected for the last year or so that it’s possible I may have EDS. I’m late 30s F. I was diagnosed with endometriosis on 2022, finally (I’ve had two surgeries). I have complex migraine, chronic SI joint pain for 15 years, weak/chronic pain in knees and shoulders. I have costochondritis, my sternum pops a lot, and a few years ago I experienced a popped rib. Currently in a flare that I suspect is rib subluxation and I’m miserable. Pain meds historically do not work on any of my joint problems. I feel like my spine is a loose stack of books and my joints hurt because they slide around. Something hurts all the time. Oftentimes, more than one thing hurts most of the time.

I have some vascular insufficiency as well as hypermobility (recognized by physical therapists) and my doctor suggested last year it’s possible I could have EDS. I’ve got IBS and low blood pressure, but no stretchy skin and I’m not double jointed (I can’t bend my thumb back to my wrist, not even close).

I have felt a bit crazy over this for a long time. I assumed it was weakness, or something genetic, but tested negative nearly 15 years ago for sjrogens syndrome, RA, lupus, and ankylosis spondylitis. No one has really entertained fibromyalgia, which I don’t think I have. I worry constantly that I’m going to feel sick, get too hot, or not have something I need when out in public. It’s hard to be physically comfortable and I’m tired of being that person despite it not being overtly obvious.

Apologies for the long lead up to my question, I’ve never collated my symptoms before. I guess my question is: how do I ask my doctor about testing without being lumped into the hypochondriac category? I’ve had a lot going on medically the last two years, and I’m so tired. I’m not even sure what the diagnosis affords in terms of treatment? Am I just… gonna be wrapped or wear corsets? I suppose any of that is an improvement over my entire rib cage feeling like it’s on fire.

TL/DR: my body is screwy but I don't pass Beighton and don't know what's up. I AM NOT looking for a diagnosis. Just experiences, advice on compiling/presenting my issues to a doctor without sounding crazy and advice on finding an actual doctor. (or maybe someone who relates because I feel alone and broken😅) Also kind of just venting because I'm so, so tired.

All of my life I have had joint instability/hypermobility. My hips dislocate multiple times a day and can do it on command. My shoulders and knees sublux daily and can also do it on command. I can feel my ankle joints slipping when I walk. My wrists sublux and pop. My ribs dislocate daily and have to be pushed back into place. Hugging me too tight or bending the wrong way dislocates them. My sacroiliac joint is constantly messed up and needs to be popped to help with pain (not sure what exactly is going on with it). I can't hold my baby for too long or my shoulder subluxes. I'm an ex dancer and can still touch my entire back, turn my arms in funny directions, and twist my legs up like pretzels BUT I do not pass the Beighton scale anymore. I did as a child and teen but at 29 I no longer do because I am stiff everywhere. I have POTS, MCAS, and ADHD. I'm in constant pain to the point I don't know what not being in pain feels like. I didn't know that how I feel was not normal until the past year or so. My husband thinks I'm just complaining to complain. How do I find a doctor that will take me seriously? My mom is currently fighting for diagnosis after her PT brought it up because she has similar symptoms. She has decades of medical history and a large medical team to back her up though and I have none beyond pregnancy (long story). I mentioned my issues to my OB because I was in so much pain that I couldn't move and she just tried to give me muscle relaxers which made things worse and told me pain is normal. The EDS Society page has zero doctors listed within 5+ hours of me. I would have to travel to another state to see one of them.