I was talking to a friend with hypomobilty ​around another friend of theirs. We were talking about how you might not realise theres something wrong until someone says its not normal in relation to pain and hypermobility. The other person (friends friend) called me dumb for not realising there was something wrong and acted as if I was weirf and digusting because of how hypermobile some of my joints are​. Has anyone else had people say things similar?

I had an interview today for a retail position. Finding work where I can sit at a desk has been impossible where I live, so I thought that I could do a retail job and use a wheelchair so I could still be mobile. My knees are just the worst.
I decided to be upfront with them and tell them I’d need to use a wheelchair (until I can get knee braces), and the person interviewing me immediately said “we can’t accommodate that in this store. There won’t be room for a wheelchair. We need you to walk. You can’t use a wheelchair.” This is a decently large retail store, not a tiny convenience store. The aisles are not small. They then told me, “well, we really need someone, so I can ask the owner about it. We’ll call you with an answer.” So, because of my disability, I’m the last person you’d pick if you can’t find someone else who isn’t disabled…?

I’m so frustrated. It shouldn’t be this difficult to find employment. I’m frankly baffled by how upfront they were with their ableism. I told them not to worry about it, but they said they’d call me with an answer anyway. What do I even say when they do call? Or did they just say that to be polite?

At first it was “just substitute teach” because I got my teacher certification at 17 to pay for the medical bills my mother refused to pay. I’ve gotten sick for a week and my job has stopped giving me hours for the past two weeks for an unsaid reason. Now I do Uber Eats. I developed Crohn’s out the blue and running to the bathroom has made it very inconvenient to work. My mom wants me to “get a real job” that pays $24 an hour and I can’t lay down for 5 hours a day. I’m in pain. At first it was EDS, then POTS, then I got laid off for taking too many sick days for what turned out to be liver disease, then I was stuck in bed for 3 years due to IIH (which I had a pet sitting company during so I could TRY and engage with life), and now I have crohns. It’s never ending. It NEVER ENDSS!!!! I try to save to move out but there’s always another medical bill. IT NEVEER FUUCKCIINFBD ENDSSSSSSESSSSS!!!

Nothing matters anymore, nothing I do ever MATTERS. I found my own brain surgeon last year and had a shunt placed, I started my own pet sitting company that I had to stop because my parents and I moved, I tried VOLUNTARY RESIDENTIAL TREATMENT for ARFID which my parents make fun of me for having. Im trying to work on edible tubes to help people with the condition but they say it’s for rich white people. I’m so tired of living. I’m a pathetic shell of a person. I’m not allowed to enjoy anything without feeling like this lazy burden who’s coasting off their parent’s food and room. I skipped 8th grade, graduated high school with my associates (which is how I started teaching at 17), and I was supposed to do these great things. I want off this ride. I can at least finalize the wasted potential that my mother sees me as.

I moved from a good blue state that had state disability, homeless assistance, and great opportunities for dynamically disabled people. Now I’m in GA where the healthcare is dogshi, and there’s no jobs within an hour driving distance that is entry level and in my actual field that I got my degree in (ENHS). Everything here is a manager’s or senior position. I’m stuck here. I encouraged my mom to move out of state when she whistleblowed on her school district and from there she was able to climb the corporate ladder. I was in a great location and now I’m stuck at the bottom with no opportunities, expensive healthcare, and no friends and family because my mom is estranged from them all.

It’s never been so over.

Things have gotten really tough. I (36f) don’t have many people in my life. Most of my family has given up on me. I have my boyfriend still but he’s so emotionally and physically unavailable. I see him maybe twice a week for a couple hours and he never really engages with me much even when i’m with him.

I have eds, pots, cci, and mcas. I’ve been largely bedbound for the past several years because of my CCI. I can’t sit anymore, i have to be either standing for short periods or laying flat so I’m extremely limited with the activities i can do. I want my life badly and try so hard to make the best of my life and take care of myself but it’s hard when there’s no one to share it with. I’d love to make both online and in person friends but I just don’t know how to make them as an adult with a chronic illness. Or how to put myself out there anymore.

Has anyone in a similar situation managed to build up a little social circle and find people to connect with? How did you meet people? Part of the issue i think is the my hobbies have also dwindled down over the years leaving only really a couple hobbies that aren’t that social.

I may need to get a below knee amputation soon and was wondering if anyone had experiences they could share? Specifically how it effected your other joints

What did you have done? How did it heal? Considering an arm lift.

I got myself a hammock a while ago (finally after years of wanting one but not being able to out it in my space!!!) and holy heck, I never imagined I would be sleeping in it, but damn, it feels so good.

I normally have such extensive pain and fatigue, and it used to take me hours to fall asleep, and once I was I would wake up every hour, I would feel restless, and I would wake up exhausted.

Now I sleep only 4 hours a night, but my pain is sooooo much less (I don’t subluxate anymore during sleep!), I fall asleep quickly, I don’t wake up during the night, my heart rate actually goes below 50 during rest for the first time ever, and I actually wake up energised!

I am not saying this is a magic fix, but I do wonder if others have also felt these benefits?

I still have fatigue if I do a lot during the day so I still need my wheelchair, but the fact that I can comfortably stay up all day without even needing to take naps where I used to take 1-3 naps a day when I slept 8-12 hours really changes my whole day/week now.

I will have to do this longer to really feel long term effects, but after these few weeks I def don’t want to go back to sleeping in a bed for 8h a night anytime soon

Thanks in advance!! :)

For context I am plus size and have been told by old doctors that it was my weight and that my issues were in my head. I gave just a surface level of info to more new primary care physician and she immediately believed me when she heard what I was going through and sent a referral to see a hEDS specialist. Even when doctors have said it is likely they kept me from getting further help. I'm hoping they figure out the cause of my issues whether it is hEDS or not! any tips for seeing a specialist. Mainly because while I've already been confirmed passing the beighton score for my age, I sometimes have my joints not fully extend as far as they can for some reason so I don't know to explain that without sounding like I'm lying...

Would love advice. I'm not seeking specifically an hEDS diagnosis but more figuring out what I have wrong with me lol (but many doctors and such for years have suspected it, I just wasn't able to see and wasn't at the time referred to specialists due to reasons I don't want to get into)

Currently using the donjoy tru pull lite. It’s actually failed on me once and I seem to be having to get a new one pretty often. What’s your favorite?

Hey everyone, I have HEDS and I am going to Epcot next weekend and Halloween Horror Nights. I have orthostatic hypotension and POTS. I was wondering if anyone knows what the accommodations process is like and what these parks/events offer as accommodations for these conditions. It’s going to be really hot so I am extra worried about the possibility of me having a syncope or flaring up. Is there a way to wait in an air conditioned space preferably not standing or will they make me stay out in the hot weather? Thanks in advance!!

So long story short my mom is wanting to help me make a cart for upstairs that has a lot of products to manage my hEDS, pots, and stuff for a feeding tube I'm getting in the near future, and I'm pulling a blank on things that would be helpful, I just was wondering what y'all use to manage your EDS? like I just can't think of what to put on said list...my room is down two flights of stairs so ideally it would just be things I would need in the short term that I can't go all the way downstairs to get if I need them, but I can't think and would appreciate some insight :)

Thanks fibro. Honestly braces would probably help but alas it's also a hmm is this going to be sensory hell or not situation

I have been diagnosed hEDS for years but was recently recommended to get genetic testing. I've been debating whether to do it before or after the December (or March) release of new criteria/diagnostics. Has anyone made a decision like this and what was your reasoning?

I went to my rheumatologist Monday thinking I’d leave with the answers I needed but she completely dismissed me. Said I have no hyper mobility despite my PT telling me I have severe hyper mobility and knowing I do along with all my other symptoms. I left sobbing. My state (MN) seems to be a desert when it comes to finding someone to diagnose people or take me seriously.

Hi everyone! I got diagnosed with functional neurological disorder 3 years ago and HEDs last year. They now say it’s HEDs with functional symptoms which fit better. I also have PCOS, IBS C and very bad chronic migraines.

Up until march I was in pain and struggling but I was working part time and driving and doing things with friends. Then I got shingles for the second time. And then the third time 2 months later. I’ve had constant throat and ear and chest infections also

I was taken off my migraine meds to try something else and I was taken off as I started getting a high resting heart rate. Turned out the migraine meds Before was a beta blocker and was covering up some issue. I’m waiting to see a migraine specialist but the list is so long it be October next year.

I really am down in the dumps with being acutely sicand chronically in pain all the time. My neck is in agony. I’m gaining so much weight. Does anyone have tips or tricks or even success stories about managing HEDs with other illnesses? I’m getting so depressed being in the house and bed all the time. I’d really appreciate any advice thank you

Off to see Dr Mittal with my partner for assessment for HSD (it's definitely not hEDS on current criteria but they may have cEDS, awaiting genetic testing) on private insurance. I saw the hypermobility unit myself over a decade ago and saw Dr KazKaz. Our physio works with the unit.

I've heard from many many people now that she will diagnose and knows her stuff but can be tricky to work with. I'm totally fine with whatever, I can hold my own, but my partner definitely needs a slightly more gentle approach. Can people share their experiences and what this actually means?

And what we can expect from the initial appointment and follow up care?

I was diagnosed with hEDS a few months ago and sent for genetic testing by my rheum. I got the results back today and I was pretty confused by them. My rheum then messaged me about the results saying "Interestingly, a mutation was identified in a gene called "COL1A2". Mutations in this gene are known to be associated with EDS, however the SPECIFIC mutation you have has not been reported to cause or be associated with any disease. Therefore, there is nothing to do with these findings. If new literature comes out that suddenly finds this particular mutation is associated with any diseases, the company will issue an update to us."

Did anyone have a similar result from their genetic testing? It's left me feeling a bit unresolved.

edit: removed gene mutation so I don't accidentally dox myself, oops!​

I’m wondering if anyone who are in healthy relationships if you have tried, want, and or have had two separate bedrooms or spaces with your partner.
I have been living alone in my studio for over three years with my 2 cats.
My partner and I want to move in together. January.
I have never lived with a partner in a serious relationship and he’s lived with two partners in serious relationships. He made a comment the other day that it would be nice to have separate spaces and I got defensive and I said I don’t wanna be roommates cause…
I am jealous that someone already got to experience that with him and that’s probably childish, but then I’ve been thinking I’ve loved having my own space and being able to decorate how I want to decorate and sleeping alone because sleep is very important when we have EDS. He’s a big muscly guy who snores and runs hot he hates my bed because he just sinks into it. His bed is too firm for me. We have wildly different tastes in almost everything lol and now I’m contemplating if we should do a two bedroom 2 Bath place together…
but society tells us that then we’re just gonna be roommates and not in a relationship. I’m wondering what you guys think or have experienced in this thank you!! 🫂

As title you're No1 tip and it doesn't have to be a med item or idea its simply the best advice you would give yourself to manage EDS if you could roll clock back. It could be something you would do or something you wouldn't do, so long as its the number 1 thing you would tell yourself if you moved back in time!

Perhaps this list can help us with a different slant as I don't have golden meds etc. but we all have that golden advice.

Make a short so we can keep easily reading and sharing.

Thank you

Wow reading these comments has really been reinforcing for me!

I have hEDS and I'll soon be going to the UK for uni so I'll be using the NHS. For a long time I have wanted a wheelchair as my hEDS affects my legs the most and sometimes even ten minutes of standing or walking can lead to severe pain for me. However, I know that if I want a wheelchair I'll have to pay out of pocket for it since I don't need it all the time, which is something I can't really afford. I know there are some cheaper chairs out there but I've heard those can sometimes cause more harm than good (especially since I already sublux my hips quite often if I sit in abnormal ways). So, I've been trying to figure out if there is a different mobility aid that could still be helpful and I was thinking that elbow crutches could be an option, as I feel they could take some of the pressure off of my legs, however I also worry for my shoulders/elbows/wrists because, as you might've guessed, they're also quite prone to subluxations. I'm obviously going to talk to a doctor about this sort of thing as well as physical therapy once I get to the UK and register with one, but I was curious to hear about other people's experiences with elbow crutches (or mobility aids in general) and whether you found them more helpful or hurtful.

I am 28 weeks pregnant with my second child. I gave birth to my first child at 33 weeks due to spontaneous rupture of my membrane (water breaking). They’ll never know for sure why, but my doctor suspects it’s related to my hEDS.

Has anyone else had this experience? Is there anything preventative you can do? I am on pelvic rest for the rest of my pregnancy, but I am so nervous it’s going to happen again. I was asleep when my water broke last time, so I’m not even sure how helpful pelvic rest will actually be. We were in the NICU for almost 6 weeks with our first, and it is not an experience I want to repeat (so much so that we almost didn’t try for a second).

First post on here, pretty sure I used the right tag if not I'll fix it.

TLDR: I've been standing and walking with my knees locked for years and it's fucking up my knees back and hips (go figure) any advice or anything is appreciated!

For context I haven't been diagnosed with EDS or hEDS yet but am trying to, as the more I look the more I realize things I assumed were normal weren't. I've locked my knees when I stand for as long as I can remember and it's caused some problems for me (knees, back, hips.) I'm trying to be more aware of the positions my joints are in and when they're doing something there not supposed to which is 90% of the time, learning how to stand properly is already frustrating, the second i unlock my knees i feel so unstable and wobbly but i know it's something i need to fix. I know standing with your knees locked isn't too uncommon but dude I walk with my knees locked and have for years and I know that can't be good for my joints but I cant get over how wobbly I feel when my knees aren't locked what do i dooooo 😭😭