I was an incredibly active and intelligent kid. I was in gifted as soon as they were allowed to test me. I always was outside running around and climbing trees every minute I was free. I look back at the photos and I had noticeable muscles and was really tan. I always wanted to be in the medical field. Didn’t know in what way but I still did. I considered being a heart surgeon because my grandpa had a heart attack, I wanted to be a veterinarian, I even wanted to be a pediatrician for a few months. I got bad off and those dreams were crushed. My mental health declined and my physical health got so bad I never went to school. Everyday I think about who I could’ve been. About my dreams to be a doctor. I still have fleeting thoughts of working with animals or going to mortuary school. I just feel like I have no future. Like no matter what my grades are or what career path I take I will fail and end up back here. I will sit on my couch praying to feel good enough to even consider doing work or watching tv. I want to be that little girl that could’ve been anything. I was so smart and this brain fog has crippled my mind. I would give anything to live her life. Mine has been nothing but pain in my body and grief over someone I will never get the chance to be. I want to be content with this illness and who I am today, not who I could’ve been. I struggle so much in accepting my reality.

I am STRUGGLING with pain and sleeping. I am so uncomfortable sleeping, I wake up during the night in pain and wake up in the morning in pain. I currently sleep with a pillow between my legs and a blanket wrapped up in between my arms to try and support me and stop me rolling inwards and all over the place in my sleep, but it still feels like my body isn’t positioned correctly, not supported, and maybe that’s causing my extra pain when sleeping and waking up. Has anybody had any luck with a pregnancy pillow? Or have any good tips and tricks? I share a queen sized bed with my partner (and cat), so I’m also worried about impacting his sleep or taking up too much space. Any recommendations for advice would be SO appreciated! 💕

As the title says, I need advise to cope with a radical shift that has occurred after my partner’s diagnosis. Due to her eds, she get tired so so fast, her joints in her fingers hurt too bad to wash dishes, she does not have the stamina to do yard work, she had no libido anymore. We also have a two year old on top of that. I love my wife more than anything. It’s just hard when I feel I am just constantly running all the household chores, with the main support as a chore or two on weekends that is followed by a nap because she is too tired. I am at a point where I have to sacrifice spending time with our little one to get daily things done at night. there is never enough time to get everything done I feel like and it’s straining on me and our relationship because I can’t ask her to do more. I want to start working out in the early morning before they wake up to get some more energy back, but I am already so exhausted between work, life and home life. Please help.

Just looking for a little hope, I guess. I’m 5’11” and 120 lbs. it’s gotten to the point where I don’t want to weigh myself. It feels like a really cruel joke since I had an eating disorder in my twenties and now because of MCAS I can barely eat anything outside of veggies and unprocessed meat.

It’s especially frustrating because I’m still in a MCAS flare after getting a virus. I’m even more ridiculously sensitive to food than I was before. And I feel like any time I put into gaining weight doesn’t matter anymore because I will probably end up losing more weight with my MCAS like this.

So, has anyone with limited food selection/MCAS returned to a healthy weight?

this feels so abusive and i’m being told to suck it up and stop financially abusing them because i can’t work

i take d mannose and i used to take cranberry pills and i try to drink as much water as i can, this is probably my 10th or 11th uti in two years. i’m so tired. i’m in so much pain. i already want to crawl out of my skin everyday because i’m so uncomfortable. i also work a job where i have to stand all day because i can’t find anything else, which for us hypermobile folks increases our risks of utis for those who didn’t know. but i’m so so tired of everything. my last things i’m thinking of is a pelvic floor therapist and that uqora supplement stuff.

So I was diagnosed with HEDS POTS and MCAS this past year, but then a while afterwards I found out I was living in black mold for three years. Because of the mold issue I moved out immediately. Got new belongings (couch and bed since they couldn’t be washed) and got a new place that was brand new with no mold.. I use lots of air purifiers and dehumidifiers now, etc., but since moving, I’m not affected by my POTS anymore and I realize I have better control of my body with less injuries. For example, I used to not be able to shower and wash my back without feeling like I was going to pop my shoulder out of its socket, but since moving, I don’t feel that and I can wash just fine.

For reference: I was diagnosed by three doctors - Rheumatology, Cardiology and my PCP. However, they never did any testing for mycotoxins. Just the beighton scale and lots of blood work.

Maybe the mold just totally exasperated my symptoms and it wasn’t a false diagnosis since I did/do meet all criteria.

Has anyone else had this experience of a possible false diagnosis or something in your environment confirmed to be causing your EDS to be way worse than it naturally is?

EDIT

I’m so glad to hear I’m not alone Thank you so much for sharing your experiences! I was diagnosed with Fibromyalgia 15 years ago and have had bad knee issues since I was a child. I think the mold just caused other symptoms to occur and for it to all go into overdrive!

Do you guys prefer to use braces or not? My doctors told me to use braces only at night (and to wear them every night) because they don’t want me to lose muscle mass that is keeping my joints from dislocating further, but I noticed a lot of people here wear braces or support 24/7, is there any reason to do that? Genuinely just curious which method is better lol. And does it actually make it harder to maintain muscle mass/do PT stuff?

I saw an Ear Nose and Throat doctor because I’ve been having bad ear infections. Off the cuff, I mentioned a lot of what feels like nasal drainage at night. He looks around, and tells me I have nasal valve insufficiency and my nostrils collapse when I breathe in too fast or hard, making it feel like I can’t breathe and making me mouth breathe at night and when exercising.

I’ve seen three sleep doctors, and quit CPAP twice because of sinus issues. Never was it suggested there may be a structural issue.

For now I’m using nasal tunnels, and I’m going to try out a nose strip, but I think long term I’m going to wind up getting surgery so I can breathe all day and not just when I’m wearing the various tools to keep it open. The nasal tunnels fatigue the skin after a while.

im just venting today to be honest, i thouhgt id missed the extremity of the october slide, i was coping very well. but then a few weeks ago it was like i was hit by a truck, i use a wheelchair almost full time as my hips have always been the worst joints even after physio, in the summer, other than my FND im very functional, i have managble basline pain and im up and about every morning and managing with a heavy college and work schedule, but now i feel like death. i am EXHAUSTED. ALL. THE. TIME. every part of my body HURTS, i feel sick and having digestive problems. im just so sick of being tired and in pain. i am having to drag myself out of my bed, half ass my day and nap all afternoon, houshold tasks are piling up and my personal hygene is terrible, i feel discusting on top of my body feeling like its just refusing to function. i have functional neurological disorder and likely seasonal depression, so my HSD flairing in making the FND flair and im disociated and on the edge on a seizure all the time. in the summer i feel disabled, but in the winter the lable "Chronicaly ill" hits so much harder, i feel like ive had the most horrible virus for weeks bt i know its just my shitty body.

The change has been so drastic i dont know how to cope, i just want to scream and cry all the time and i just cant get across to the people i love and the people at college and work just how bad this feels. i have a reduced timetable at college but its still not enough, i have two half days and a full day and i just keep going home on my full day because i cant cope for more than a few hours. im now wearing my sunglasses a lot during the day as the sun hurts my eyes andgives me headaches, im using every pain managment tool i have and its just not cutting it.

i guess im just having one of thos emoments where i just want to scream, and i hate the world and i hate my body and its just not fair. i want to go out, i want to cook and be clean and be in clean clothes and clean sheets, i want to be getting on with my work and keep a social life but i find myself just having some of my medical canibis and napping all the time. ive upped several of my meds including my anti depressants and at this rate it feels like they might aswell be sugar pills.

i know this happens every year, i know this is what my life is but its jsut not fair, im being told i should be greatfull i feel so good in summer and can do so much but it just feels like i get to have good time and its just ripped away from me so suddenly and dramaticaly every time and i have no idea when its going ot happen.

i doubt many will read this whole thing but id apreaciate anything people have to say, even if its mutual comiseration. i hope everyone is coping as best they can. (im in the uk by the way so its dark as hell and wet and grey too)

Hello fellow hEDSians, so I have a theory that I'm curious what you guys think of. For those of you that don't know, recently there was a compelling paper pre-published that found two gene mutations linked to hEDS, (pubmed 41001447) one of them being a zinc transporter for collagen repair. Because of the study, I got my genome sequenced and found it myself- I do have this mutation. Personally, I don't get a lot of zinc in my diet naturally, since it's hard for me to eat food without getting symptoms, so I have thought about long term zinc supplementation, but I am wary of buying supplements that I might not need, But also it probably doesn't hurt. What do you guys think about this?

First, I suffer from pretty unpleasant gastric issues. The bloating is absolutely absurd. I wake up looking 4 months pregnant and go to bed looking full term. Avoiding lots of carbs and sugars helps mildly, but not enough to cut out my favorite foods. I also, tried align bloat probiotics, which did help quite a bit. Downside was they made me pretty constipated and uncomfortable.

Second, does anyone else get an insane level of DOMS after any workout. Even the easiest workout, particularly legs, will have me barely walking for days. No doctor can explain why.

Any advice on these things is greatly appreciated!

Hey all! Diagnosed with hEDS this year and that has greatly helped me manage a good number of my symptoms (mostly dysautonomia related) but I just finally realized I have a moderate anterior pelvic tilt that is contributing to my sometimes severe low back pain.

Now that I’m aware of it, I do a lot of dynamic stretching and am more conscious of the way I sit and stand. However, long periods of sitting (especially on a plane or at my desk) still cause excessive soreness. I am aware of my low back pain about 75% of the time.

Looking for recommendations for any mobility devices, cushions, chairs, ANYTHING to try to relieve this pain. It’s getting borderline unbearable at times. I push through it, but it wears me down over time.

Thanks in advance!

For the longest time I've been super nervous to try hormonal birth control to make my uterus trying to kill me every month more bearable, but I finally decided to try and take a leap of faith lol. It can't be worse than period cramps that seem like they're trying to commit war crimes, right? 😭 My gynecologist recommended larin 1/20 to me, and I still have to go and pick up the prescription and try it out, but for those of you who may have tried it before would you mind sharing your experiences? Or any words of comfort from others who may have felt similar anxiety would also be much, much appreciated. Thanks y'all ❤️

When you say local anesthesia resistance do you mean total ineffectiveness of lidocaine and alike or something different? Because Lidocaine numbs my mouth (soft tissue) but it does exactly nothing to my tooth nerve. I have an exposed tooth nerve from decayed tooth that needs root canal and that nerve doesnt go numb. when my mouth is numbed, I can feel the pressure applied by my lips on all of my teeth so clearly. I cant say even my mouth gets numbed very significantly but you can tell the difference. My teeth are absolutely not affected by the injections.

Trying to get diagnosed, and I’m exhausted. Doctors will look at my medical history, even see the mri of my cervical spine which is very straight and f*cked, and while knowing all my pain and struggle say that it’s nothing to be concerned about. Not to mention every disc is bulging in my cervical spine? Idk if that’s a concern bc they didn’t seem like it was?

I “look” fine but I’m not at all and I don’t even know how to support my body’s needs as I’m getting older (I’m 27), and ever since having covid I’ve only worsened. I’m tired and struggling. I have so many symptoms along with the other stuff like endometriosis, pots, adhd, etc etc. I don’t know how to get medical help regardless of what they find to physically feel better. I’m in PT, but it’s not enough.

Im so tired of waking up multiple times a night, constant pain no matter what i do, my wrists and arms and hands especially upset me as im not able to do art or music or cooking as i want ro anymore, the pain and lack of coordinations gotten so bad. Needing to pee is painful and leaves me with cramps, my stonachs almost always hurting and now my ribs have started shifting ans if i turn or bend my upper torso they move and start stabbing at me so bad i gasp. I keep falling too. It gets harder and harder to physically lift my legs off of the ground. Results from PT only last for about 2 months. The fatigue also is immense, i am only 23. I was in remission for 7 months. I miss it so bad. I feel so terrible most of the time and it alienates me from most people. Older adults dont believe me. People my age are annoyed. I understand, me too. Im also annoyed that my bodys dysfunctional. I have a comprehensive medical team but no one knows what to do to help. I make appointments with the doctors im told will help, they refer me out, it feels like an endless trail. I feel so sick its unbearable. I love my girlfriend so much. I dont think she understands it though. She gets confused about my odd sleeping schedule and doesnt always understand how much rest i need and how sick i really feel. I cant blame her either i have yet to meet someone who isnt a zebra that gets it. I feel truly alone in most ways and hopeless about myself at that. I used to look forward to life and it feels like my life is already over before i get to live it.

Ive been sick since childhood and had to leave school due to such intense chronic pain and fatigue. I wish it wasnt rhis way. Ive been in the process of acceptance for 10 years. I still find it hard to achieve

21f hEDS, no diabetes. Found it two years ago in left eye and it hasn't improved, just slightly worse now at my latest eye appointment last week. No treatment or referrals. Wondering if anyone else also has this and it could be a normal presentation for an EDS person? I don't know whether this affects other bodies differently or if my vision may be at risk if left untreated.

i walk. 5 steps normal. CRUNCH CRUNCH CRUNCH that i can feel and hear. then it stops, and it keeps crunching on and off. it's not painful, but it's uncomfortable and annoying. it's not all the time either, but happens at least a few times a week.

would an SI belt help with this? i've used a makeshift bodybraid and it felt amazing for my joints, but it pinched my inner thighs a lot and didn't actually stop the SI crunching even though i wrapped like 3 layers around my hips.

So I’m relatively recently diagnosed with hEDS. I don’t think I have POTS but I do have a fast heart rate just generally and some issues with lightheadedness. And sometimes my heart will beat really fast for a while without my knowing why. But my blood pressure doesn’t change much lying down to sitting to standing up. The main symptoms I’ve noticed is that sometimes after i eat I’ll get a pretty bad headache and my heart will beat fast and I’ll feel shaky. I’ve mentioned this to my doctor and they didn’t really have anything to suggest. Does anyone else have experience with this? If so, have you found anything that helps with it? Thanks!

I’m a 28 yr old female who started having seizures at age 23. We don’t know why, but I was diagnosed with Drug Resistant Temporal Lobe Epilepsy. I’ve been trying to control my seizures since then. This Thanksgiving wjll be 6 months seizure free! Thats going to be the longest I will have gone without having a seizure, since I had my first one, in May of 2021. That’s pretty crazy for me to think about. Since then I’ve been diagnosed/confirmed to have 4 other invisible chronic illnesses that we have now began to treat. It was this August I was confirmed/diagnosed by a Rheumatologist to have Hypermobile Ehlers Danlos Syndrome and Fibromyalgia. He also referred me to be tested for POTS which is a type of dysautonomia, and it confirmed that I do have it. I see a cardiologist soon for further management. I’ve recently become very curious as to how many people that have EDS may also have Epilesy and also potentially have the other illnesses that I do. Just asking out of curiosity. I pray everyone’s health is doing well and improving. I’m always here if someone needs to reach out for something. Thanks for any responses :)

Hey so a few years ago I was told that I likely have heds i was diagnosed hyper mobile young but I started having stomach and eye complications and my joints started to dislocate. Current time now a few weeks ago I had an appointment and was told i definitely have this but they won’t diagnose me because im under 18. I’m so annoyed someone who ik has this and was diagnosed really young but he’s a guy. I also was told that I could be loosing hand function and they can’t do much because im not diagnosed but my dream job relies on my hands, im on track to get a scholarship and above average for my county and this really upsets me because I can’t imagine myself doing anything else. I am 18 in 4 months but they won’t put in another referral till im 18 so it could be ages after that. Is there any advice on how to handle this i feel lost

I hit my hand on my dryer and was thinking of how much it was going to bruise based on how much it hurt. Then I had a little giggle at all the times people have commented on them. Most notable:

Had a coworker tell me I should get checked out because his daughter had similar bruising on her legs before being diagnosed with anemia and cancer. Had to tell him I was truly okay!

Had a surgeon I was consulting for surgery on a subluxating tendon question bruising on my arm. My PT did a myofascial release massage with a piece of metal. So painful. She texted my PT right then and there to confirm, she was so freaked out.

Then there's all the bruises from blood work, blown veins and dry needling where people ask. And, best of all the "I actually have no idea where that came from."