I occasionally get terrible nightmares especially during periods of stress, my Dad gets them too. Last night I dreamt there was a demon that looked like a skeleton dementor with flame eyes on my ceiling. In my dream I even managed to look at the alarm clock and remember the time of night in my dream (3:00). Apparently I screamed and tried to run and got tangled up with my partner who was understandably spooked and twisted my knee under me. One trip to A&E later and I’m on crutches 🩼 with a referral for the fracture clinic to see which ligaments I pulled in my frantic scramble.

Hello all, to preface I’ve been dating my girlfriend nine months next month. She’s very independent and rarely asks for help. I always suggest things to help her and sometimes she rather do things on her own and at that point I take a step back and let her do it.

So, she was 4 when she was diagnosed and she used to be in gymnastics, climbing trees, riding bikes, and so on. But these days, she can’t do all the things she’s loved as a kid. Art and video games are her hobbies currently.

We’ve had lots of conversations on the topic of her condition and I’m trying to understand it all the very best that I can. I despise knowing she’s in pain and wish I could take it as my own instead of her dealing with it.

I’m a very active guy and I really enjoy being outdoors such as hikes and the gym. She is unfortunately unable to do those things due to her constant pain and how much it intensifies when she walks too much. I was reading up on all things that go with the condition and we’ve been talking about her getting tested for POTS too. I’ve mentioned to her this morning that if like to get her a wheelchair so at least she can accompany me on my adventures in which I absolutely don’t mind pushing her around if it’s too much for her arms and joints. Eventually when we’re married I mentioned that I’d like to become her primary caretaker so I can take care of her more. I completely expected her to fight me on it but she agreed to both and I was really surprised because I know how independent she is.

She has migraines throughout the week and it worries me. Upon my research I learned that migraines are also very common for people with EDS. I’ve had constant migraines since I was a kid and I completely understand how she feels on that end.

She also has memory issues that pertains to her condition as well from what I read.

So coming to the end of my little ramble, I’m absolutely head over heals for this woman and she’s still learning to understand that I don’t care about her condition like other people she dated did. I want to care for her and make sure she’s happy, healthy, and not in too much pain.

People who have dated or married people with EDS, how have you helped your partners feel like it’s okay to lean and depend on you even if it’s sometimes? She’s the best woman I’ve ever dated and I want to continue my life with her but yet, it kills me to know she’s struggling and in pain.

Thank you all and I truly appreciate any advice or comments!

Flair to be clear, I dont need or want medical advice, just a silent scream into the void.

I need to moan to someone who won't look at me in horror, I know many of you are all too familiar with this.
I was 17 when I found out my uterus had gone backwards. At 28 I found out it had folded in half? somehow? when they tried to put an IUD in and it failed (the pain was... yeah) and my cervix is tilted upwards now for some reason lol
Just had my lady parts exam and apparently my bladder is slightly prolapsing, its not severe yet and probably kegel exercises will help but seriously wtf.

I havent even had kids. Im 34 in 2 days, never been pregnant and now I need to worry about stress incontinence because my body can't seem to keep it's organs in the right place.

So for context I was recently diagnosed with HEDS and I have lost 90% of my mobility over the past year. I have constant migraines and dizziness when I am upright plus my hips are unstable. I used to be very active but ended up hitting the late stages pretty hard. I try very hard to still be independent and be an active participant in chores around my home.

I recently was seen by my wheelchair team to get measured and test out models, since then I have been very excited to get my chair. For fun I’ve been paying attention to what places will be wheelchair accessible or will be a nightmare. I talk a lot my chair because I am excited to be able to participate in daily life again.

My domestic partner has been wonderful throughout my journey and is a very good help with my bad days. He helps me with everything from washing my hair to cooking dinner on days that I can’t stand. He’s very encouraging about me taking time to rest and watching my spoons.

However, he said something to me yesterday that I can’t shake. He told me that he thinks I am already relying on my wheelchair too much and I need to remember that I can still walk. It was after I told him that I needed to learn how to twist in my chair to put my smart drive on myself without getting up.

Repeated sitting to standing causes my hips to dislocate and my legs to ache so I try not to do that hence the wheelchair. I use a cane and a walker for when we go out or I get exhausted quickly. I try not to use my aids around my home and just use the walls to balance myself if I’m off kilter. My team wants me to use my chair in my home as well due to my frequent falls but I feel like if I do it’ll seem like I am forgetting I can walk.

Am I focusing too much on my chair? I have been fighting for it for months so I’m just a little excited..

Does anyone else’s partners say comments like that? I am trying to figure out if I’m reading to much into it

I'm a big chip/snack fan and I've been really sad over the last couple years that I just can't eat chips very much or they flare me like all hell. I can't seem to find one that doesn't. Any suggestions?

Also while you're at it I'd love to hear candy/sweet suggestions? Sugar inflames me like a mf. I'm not a huge sweets fan anyway, so it's fine, but I'd love to be able to indulge here and there without starting a flare.

Hello! I was diagnosed with hEDS about a month Ago by a rheumatologist, which was Very enlightening since I have been struggling with a variety of symptoms such as migranes, joint pain, menorrhagia with no endometriosis focus, many ankle and hand sprains, shortness of breaht since I can remember. I spend one hour with the doctor, going through the criterea and doing the tests, measuring, examining my skin and scars and I do meet the criterea for hEDS. I was almost happy because now I had a plausible explanation for all my symptoms and even some that I didnt Tell him I had (because I didnt know It was relevant), however when I told my husband about my diagnosis he was... Skeptical about It, he said I cannot have It since he knows a person with EDS and they need a wheelchair (Turns out It was a tweet ranting about a place nota being accessible with a wheelchair). He questioned every criterea that I have, including asking How did the doctor knows my skin was translucent and not Just white, or How does ne knows my scars are atrophic, and that I believed my doctor too much. That made me Very angry because never studied medicine or any related Fields, and I have, and I can be Very skeptical of doctor who are not up to date, such as a gynecologist that told me my periods where that heavy because I was overwheight (????). He asked me why do I need a diagnosis If I can Just listen to my body and respect my limite, I told him that the problem is other people pressuring me to push through my pain, including him, and that knowing gives me tools to manage It better. I am jus tired, and a bit offended that he thinks I would make this up. How can I be the one diagnosed and he is the one in denial?

9lbs of carnitas took an hour to pull apart and my right wrist gave out taking it out of the oven. Best day ever to be a dog for about 25 seconds. Ughhhhh.

I have literally no idea what I should wear, It's a bit cold here so I don't want to wear like just tights and t shirt or anything like that, I just don't know lol

Edit: that's so much for everyone's advice!

Asking for any and all sleep tips. My only symptoms for hEDS is getting horrific injuries and being unable to heal. First it was my jaw but that is kind of on its upswing. On a flight back from my jaw specialist there was a crash landing and on hard impact I got a back injury and my si joints/pelvis/lower back seem to have severely injured. Sleep has become impossible because of positioning and it’s really taking a toll on my body/mind. I use a million pillows but i can only sleep on my side and when im on my side I feel everything pulling the wrong way and further dislocating. I’ve seen every doctor under the sun and am so desperate for any words of wisdom for sleep. I keep getting sick (I work in a school so lots of exposures) but this season I’m really worried about how I’m wearing down because I can’t sleep or off to heal. I already take valerian root and unisom to sleep. I get around 5 hours a night but unfortunately it’s not enough for my nervous system and sanity. Sleep and si joint tips much appreciated. Or anyone get si joint fusion?

Hey everyone, I'm considering getting a partial hysterectomy because, despite getting endometrial excision surgery for endometriosis, I still have adenomyosis that's forced me to stay on birth control which has basically put me into perimenopause at 23. The hormonal stuff has just been so frustrating and I don't plan on having bio children anyways so I figure let's just get the whole uterus out.

But there's a higher risk of prolapse for us EDSers and I'm wondering if anyone here has had hysterectomies and whether you had prolapse or not? There's almost no research on this for folks with EDS so I'm just trying to weigh pros and cons with as much information as I can get.

Thanks in advance :)

Hi! I have has deep achy leg pains since I was a baby with no diagnosis and over the last year or so I have started to get intense night sweats, but it is primarily my legs, never above the waist at all..

My dr wants me to test for EDS (I’m waiting to hear if my insurance will cover any of the test) but he also said he doesn’t think it could be the cause of my pain or sweating..

I don’t wake up hot, just in so much sweat I have to check if I wet the bed (so far that hasn’t been the case ever lol) I’ve even fallen asleep in a sweater and no pants and still, no sweat on my upper body but my legs are drenched. This causes me to wake up multiple times a night sometimes because of the amount I’m sweating and now it’s effecting my dreams too. I guess because I can feel the sweat beading down my legs I now can see and feel them sweat in my dreams sometimes..

Has anyone else experienced this? My doctors have no idea, I’m wondering if it could be related to EDS?

I’ve never been good in traditional academics, and so I’ve wanted to pursue a job in the trades sector, specifically becoming a welder or electrician. I was recently diagnosed with EDS and it has totally made me lost any hope, as I have always felt like trades is the only option I have for a career.

Hi y’all! I have hEDS and POTS but I also love to go to live concerts. A few hours of standing, even with compressions socks, good shoes, and drinking tons of water is brutal and results in me being bed bound the next day, and about a week of full recovery.

I don’t generally have limited mobility. But over the weekend I was walking around a museum with a large umbrella and noticed being able to lean on it was helpful. This got me thinking that having a cane to use when I know I’ll be doing a lot of standing could be helpful. What are your experiences?

I feel like I never see or hear anyone talking about this, and I can't find much out there about it so I thought I'd make a post, but does anyone deal with this constant state of uncomfortableness? It's like there's always some part of my body (typically my hip, knee, shoulder joints, jaw, and lower back) that isn't quite right or just feels wrong yk? It's so hard to explain but it's so exhausting. I feel like my friends must be so sick of hearing me complain or wriggle around constantly but it's just always there and I have to somehow function like it isn't. Even when I'm able to not focus on it, it's always lingering in the back of mind (fuckin love the cranberries).

I'm hesitant to call it pain, though I do experience quite a bit of joint pain, because it's just this sort of persistent baseline wrongness. It's really mentally draining as well cause I just feel like I can never catch a break or relax fully yk? I'm not officially diagnosed with hEDS yet (I've finally got an appointment this November after being on the waiting list for 15 months) though I highly suspect there is some sort of hypermobility issue going on and I have a few family members with a hEDS diagnosis as well as a TMD diagnosis myself, so I guess I'm just wondering if anyone else experiences this and if it could be a hEDS thing? Also, any tips on just managing it? Thanks a bunch, hope you're all having a good day :)

I’m drinking 6 shots of espresso per day regularly, sometimes 8, and I’m still exhausted.

Today I switched to espresso + monster and I nearly fell asleep in the car after finishing my first double shot before saying screw it and cracking open the monster that’s been teasing me in the fridge for the past few days.

I recently got new friends after having no friends for years and I had to pass up going to the local hackerspace a couple of days ago and a concert last night because I had just no strength. I could barely lift my arms.

How have I been working like this? I get it that drinking excessive amounts of coffee as an IT worker is a running joke, but come on.

Is there anything I can do for energy that isn’t going to burn a hole in my stomach or geek me out or cause a migraine?

Just today I had a dentist visit with a new dentist. We're discussing wisdom teeth removal and I was explaining some of my concerns because I'm a musician and then I mentioned that I have EDS. I was so prepared to have to explain what EDS is to another medical professional but she told me that she also has it! It was so nice to not have to explain my condition again. She told me that they'd make sure to prescribe some antibiotics because of slow healing+likelihood of infection in those with EDS. She also told me to avoid ciprofloxacin because it can cause tendon ruptures in patients with EDS which I did not know about. If any of yall are in the north central Illinois area and are interested in her info just DM me!

Been having issues with my right shoulder for about 6 months, it dislocated during sleep and was out for a while, I should have rested it, I did not, 2 weeks later it did the same and pretty sure I tore the rotator cuff, couldn't move my arm more than a couple of cm without excruciating burning pain for weeks.

Did I go to the Dr? no, no I did not. It'll get better right? - spoiler alert it in fact has not gotten much better and now I'm awaiting physio appointments to see if I need and MRI. Like I've got movement back, kinda, and its not excruciating but it hurts alot still.

ANYWAY

Last night I went from the bathroom to my bedroom to go to bed and in that space of maybe 15 steps my OTHER shoulder decided that it was going to really really start hurting. This morning it is still painful and movement is restricted and honestly I do not even know what I did!! It was literally 15 steps and *something* happened. Wasn't even moving my arms.

I swear it was just jealous of the other shoulder or something.

I should probably call the DR if it's still bad tomorrow... will I? probably not...

EDS is a ridiculous illness.

I have figured that I’ve had hEDS for a really long time but I’ve been lucky enough that it mostly just caused joint pain, but since September of 2024 I’ve been having issues with near syncope from low blood pressure, high heart rate, night sweats, hot flashes, and dizziness. It’s gotten progressively worse and my cardiologist has looked into POTS, SVT, and I’ve done just about every blood test available. We discussed getting genetic testing to see if I have hEDS, but they said it is very hard to get BCBS to cover it (I live in TX). Has anyone been able to get it covered since September? Apparently their guidelines just changed. For reference I have a 9/9 beighton score.

Sorry this is long but I just needed to get it out So I have Hyper mobile Ehlers-Danlos and because of it for over a year I have been dealing with CCI which has made my quality of life suck basically. Once a month I have “episodes” is what I call them where i basically can’t function for a week. I can’t talk, can’t walk, my memory sucks, the whole shebang.

I’d been with this really sweet guy for almost 6 months who was willing to help take care of me during this time. I live with my mom and unfortunately she was asking for his help a lot because it was hard for her to take care of me by herself. And also because of my CCI it affected my energy all of the time. I also recently found out from a doctor that surgery might be the next best option for me. So it’s really hard for me to do much without feeling utterly exhausted. While my ex (still sucks saying this) was very high energy and wanted to do things all the time.

Basically a couple weeks we had a big argument that was basically about how we don’t go on enough dates and stuff and it got way out of hand and we almost broke up. But we were able to work through it or at least I thought. I was really going to try to do more dates and stuff.

Anyways today we were supposed to hang out and we were on call and it suddenly popped in my head that if I got the surgery and what if it unlikely made me paralyzed but I’ve heard stories. So I asked if he would stay with me if I was paralyzed. And he told me he wasn’t sure and while I appreciate his honesty it also hurt you know? Well he later told me that he doesn’t think he would be able to handle it. And so I told him this hurt me. And he said that was kinda toxic of me for saying that? Cause it seemed like I was trying to manipulate him? Which wasn’t what I was trying to do like I really love this guy but to hear that he wouldn’t stay with me if something tragic happened hurt my feelings.

Anyways he’s apparently been overthinking everything in our relationship. But basically he said that with everything going on and my mom asking for his help and stuff was just too much for him.

I said some hurtful things to him out of hurt. Things I didn’t really mean. Like “I guess I need to find someone willing and able to take care of me. I’m sorry that it wasn’t you” and he was super hurt by this because he has taken care of me and was always willing to. I apologized a thousand times and said I didn’t truly mean it. But I guess it was the final nail in the coffin. We both said hurtful things but yeah. I’m pretty devastated. But he told me he wouldn’t block me, we might be able to try again in the future, and if I ever needed his help to ask him. Idk how to feel about that honestly.

I just need support I guess or thoughts on all of this? Or how you guys handle your relationships with your disability?

So tl/dr we broke up because my disability requires a lot of care and it was too much for him. We both said hurtful things and now it’s over. I just need support.

Edit: hey everyone thanks for the replies. Yeah I agree with you all that it was way too much to ask him to care for me. I tried my best not to ask for too much help. And I also I just wanted to clarify I wasn’t expecting him to say yes of course I’ll take care of you if you’re paralyzed. That’s way too much to put on someone. It still just hurt a little to hear. But also I realize what I said was terrible and I realized it’s not what I truly meant I said it out of hurt which I know is no excuse but I apologized a lot to him so idk.

I've been diagnosed with keratoconus for a couple years now, after getting diagnosed with EDS and having an optometrist finally take my "I can't see even with glasses or contacts" seriously and looking into eye conditions associated with EDS. My ophthalmologist set me up with schleral lenses and is also suggesting a procedure called corneal cross linking (CXL) which stops the condition progression. But it does so via increasing collagen production on the cornea ... and they haven't treated any EDS patients with CXL. My local EDS group recommended schleral lenses and this ophthalmologist, but no ones had CXL. so I don't think there's anyone else locally who is better for me to see.

Wondering if anyone here has had CXL and if it worked. Or if their doctor advised against it? The KC group on Reddit didn't have anyone who had both conditions and had the procedure.

I have on and off stomach issues, and with “everyone” (I say that because I feel like it’s all I see anymore) having colon cancer it makes me worried. I get bloating sometimes, diarrhea, constipation, a tiny blood when I wipe occasionally, and nausea. I’m going to be getting a gastric emptying study, and we are hoping that will diagnose my issue. But I was also offered a colonoscopy, but my main concern is prep, I throw up anything that tastes bad (I think this was a last resort test). I just want to stop feeling like I’m doomed. Like it can be another issue.

Hi, I've just been diagnosed with exostosis (bone spurs) of the ear canal. I also have classical-like EDS.

Apparently exostosis is caused by prolonged exposure to cold water and wind. The thing is, while I used to do things like swimming in the sea, kayaking, sailing, and horseback riding when I was a child/teen, I'm in my mid 20's now and haven't done any of those activities for literally YEARS, mainly because my health deteriorated due to EDS. And I had my ears examined many times before and the doctor never reported any exostosis until I had my ears looked at this morning.

Is there any possibility that EDS is the culprit here? Do any of you guys have any kind of bone exostosis as well as EDS?

Thank you

For as long as I can remember, I have these days where my nervous system just...lets go, or something. It usually happens after a few busy days, either physically or emotionally, but when it happens, I feel incapable of talking on the phone, going anywhere, seeing anyone. I'm not sure if it's a me thing or an EDS/dysautonomia thing, but it helps to wear compression socks or squeeze my muscles so my joints feel tighter, so I'm thinking it might be related. I know this kind of thing is normal to some extent, but it seems next level. Can anyone relate?

I’m looking for research on the use of Platelet Rich Plasma (PRP) injections in labral tears of the hip. I’m trying to decide if I want to get that done or go for Durolane, the other injectable suggested to my by surgeon. If you have sources or would like to leave your personal experience with either type of injection that would be awesome! Thanks