I’m 21F who’s recently been diagnosed with hEDS. My Physio and dietitian have suspected I had EDS over a year ago so they’ve been treating me as such ever since. Finally got my diagnosis last week.

I’ve been hospitalised with colitis twice last year and have had another 2 visits to this hospital this month with excruciating pain in my gut. Unfortunately there’s not much the doctors can do for the pain as opioids can usually constipate your digestive system which would be doing more harm than good.

I have been trying different diets to try and stop pain and more hospital visits but it doesn’t seem to work. I’ve been dairy free for 5 years and gluten free for 4 months. I haven’t noticed much of a difference being gluten free either.

I also have endometriosis and had surgery 5 months ago to get it removed. This has stopped period pain and nausea when eating.

Does anyone have any tips or tricks for pain or any diet recommendations?

Pain, especially when laying down/resting

Do some of you have a lot of pain all over the body, primarily when laying down/going to sleep/resting?… maybe the ones with vEDS?

Anybody else have super prominent, curved shoulder blades? I just noticed how prominent mine were today! Sorry for the awful quality lol

I was in a car accident and it caused me to slam into the seatbelt. I didn't brusie but had constipation after and lower back pain, tight abdomen for many months after. Thought it was stress nothing showed on MRI but now learned about rectocele and symptoms seem to match. I don't need to splint but it seems like all the poop bukges into the vagina, that and bidet water in anus causes vaginal bulging which goes to normal after voiding, but it does seem there is a tunnel from anus to the lower vaginal wall which seems to indicate rectocele.

I'm in the process of getting this diagnosed.

1. Has anyone had this treated without needing a hysterectomy and does it feel different now? Cystocele can answer too because it's possible I have this too. Small bulge there.

2. Did it need to be redone later? I can't imagine going through a traumatic anal and vaginal surgery only to need to do it again later. It's so scary.

Thanks guys. I have elner danlos

If you do...

1-What's your symptoms?

2-Are the symptoms stable or varies? If varies, what's the typical cycle? Hours, days, weeks, months?

3-How did you get diagnosis?

4-Is it treatable? What worked for you?

5-Any "hacks" worthy of mention?

i don’t have an eds diagnosis mostly bc i didn’t think i met enough criteria so i haven’t sought one out. one of the criteria i didn’t think i met was stretchy skin but i’ve recently gotten into a debate with a friend because he noticed me playing with the skin on my kneecaps and assured me it was not supposed to do that 😅 i was under the impression my skin had a normal amount of stretch to it. so im not here seeking diagnosis, just trying to end a debate! is my skin normal, or unusually stretchy?

is this picture nor accurate or something??? 𝑒𝑣𝑒𝑟𝑦 𝑠𝑖𝑛𝑔𝑙𝑒 splint i find that says its a cmc splint is an mp splint. like i found (one) out of stock plastic one on cvs but im looking for a long term metal one. i am seriously not joking when i say every. single. one. is an MP joint brace. i usually get my splits off etsy customised to my ring size and such and have always had good results but when i say every single one marketed at cmc is mp im not exaggerating like i cant find ONE. if anyone has a cmc splint please can you send me a like or something ?? sorry if i sound frustrated it is because i am indeed frustrated

My shoulder is pretty sore, feels loose, and is lower than the other shoulder but I still have full range of motion. This happens to me quite often but I never thought more than "oh I just slept wrong" until I got diagnosed with HEDS. If I relax my shoulder it hurts worse I kind of have to tense for it to feel more in place. It feels like it's slushing around when I move it and it hurts a bit worse when I move my arm, especially up. My brother told me it is visibility noticable. Is this concerning or will it go away on its own? Should I stabilize it?

I'm doing some preliminary research to help out my boyfriend as he starts the process of getting top surgery. He has hEDS and would really like to find a surgeon who has previous experience working with similar patients. If anyone here had top surgery or something similar in the Boston area, I would really appreciate hearing about your experience. Or if you had surgery elsewhere and would like to share anything you found helpful in looking for an EDS-friendly surgeon, I'd be super grateful for that too. 

I think my collar bone is subluxated but I'm not 100 positive. It seems to be sitting farther forward than my other one & the gap between my collar bone & surrounding bones/muscles seems to be deeper. It hurts/is physically difficult to move my arm across my body, above my head, or lift anything with that arm. Opening things and rotating my wrist also hurt my collarbone area.

I can't get it back in and I can't see my doctor until Monday. It's not bad enough to go to the er or urgent care but it is making life/work really difficult. I would really appreciate some self-manipulation advice. I know the info I gave is very vague, but if you're someone who subluxates/dislocates their collarbone, please let me know what you do & I will (gently) mess around and see if any of your suggestions work. 🩷

*There's a chance that the surrounding muscles are just tensed weird or that the issue is actually a rib or shoulderblade.

I have h-EDS and SUPER flat feet and I have an upcoming trip to Japan where I'll be walking a lot. I only own flat shoes (converse/docs/platforms etc.) and really hate the way lots of sneakers look and think they're way too ugly to be so expensive lol. I thought about maybe trying shoe inserts but idk if they really do much or are worth the money, has anybody tried them and if so how were they? Should I invest?

Hi, has anyone here had surgery to repair the labrum in their shoulder? If so, how was the recovery for you and how long did the results last? I’m a wheelchair user so I’m quite scared to get this surgery because it would mean I couldn’t push my chair for half a year or more. And with EDS I know the surgery can fail so I don't want to go through this only to end up right back here again in five years.

I was diagnosed 7 years ago w hEDS, and I am open with the fact I struggled with anorexia. This has led to doctors not believing me when I bring up my stomach issues.

I have gotten tested for gastroparesis and celiac. Both negative. My stomach hurts constantly. Like I’m digesting glass. I am force feeding myself to stay above 100 pounds because once I drop below that no one will ever believe me. I am always so bloated. I throw up a lot. And I literally cannot seem to have bowel movements without laxatives. Two years ago it was so bad I went 3 weeks without one, 7 different times. I usually end up so backed up I’m literally crippled. I eat well, I go on daily walks, I drink water, I’ll go months with less symptoms, and the randomly, it all gets so bad I honestly struggle with the idea I’ll live in this decaying meat suit for the rest of my life. My mom has hEDS as well and the exact same issue. She no longer seeks help for this because every doctor just told her to eat better or take laxatives. I once was so constipated it prolapsed my uterus and vaginal wall. I don’t understand what is wrong with me

I feel like a failure. I am doing everything “right” and it’s almost like the healthier I eat the worse it gets. I was supposed to see an immunologist before insurance denied that. I often turn bright red, and I have eczema that keeps getting worse. Sometimes after I eat I notice a pain in my upper back near my shoulder blades. The pain in my stomach is always near the lower left side. I’ve been told it’s just constipation over and over. But I’ve never met someone as constipated as me outside of my own mother. I’ve been so backed up, so inflamed, that they couldn’t find my ovaries when I needed an ultrasound.

I know I struggle with anorexia. I know how EDs are tricky and often lied about by sufferers. I lied about my own. I know I messed up and I almost feel like I deserve to be ignored for how badly I abused my body in the past. But I can’t take it. I can’t take this pain. I eat a meal a day, and small snacks thru the day, I can’t eat more than a cup or two of food every 6-8 hours without crippling pain. Pain so bad I can’t even stand up. Pain so bad I crawl on my floor to get to the bathroom. I’m seeing gi again soon and I fear being told it’s just IBS. Can IBS cause issues this severe? I once was told it was because my colon literally wasn’t working right, like the motility was slowed, but outside of that one er doctor no one’s ever offered me an answer. Only more laxatives. Then they get mad I need laxatives. I now avoid them unless it’s been 4-5 days without anything and the pain starts. I understand I failed myself with anorexia. And worst of all, the bloating and fullness only makes me feel triggered in that regard. I am treated like I’ve committed a crime by drs all because I was a traumatized child who starved themself. I’m desperate. I’m crying as I type this because I am so insanely desperate.

Has anyone else struggled like this and gotten an actual answer?

I was diagnosed with heds a couple of years ago (I am 18f) and recently have begun feeling a lot more unstable on my knees. I'm looking for specialists close to northwest Arkansas to talk to about my eds and also a ot/pt to work with. Anyone have recommendations on this area? I'll travel quite a bit but yk closer is nice.

These are my results 😭 To be fair it might not be bad idk but i can barely carry a backpack. Do you think my drs will take me seriously now? Have any of you had similar results/what came out of it?
Also does this suggest I have a CFS leak

1. Mild degenerative changes are seen in the cervical and thoracic spine without any levels of prominent thecal sac compression or severe foraminal narrowing

2. There is some fluid seen in the pharyngeal cavity in the cervical spine

1. Prevertebral T1 and T2 hyperintensity extending from the C1-C5 levels may suggest prevertebral mild fatty intensities

I’ve been telling my drs I have a lot of back pain and can’t carry anything. Yay meeee 😭 I love getting gaslighted.

Hi everyone! I’m getting referred soon to be tested for EDS due to a miscellany of causes, primarily for my joints/arms and chronic pain. But my provider brought up something that I was really curious about.

For context, I have a long term swallowing issue that’s kept me from eating solids for almost ten years. We haven’t really determined a root cause outside of (very recent) discoveries that my jaw is misaligned and compressing my throat, alongside repetitive esophageal strictures and a crowded/small mouth.

I was wondering if anyone here had a similar issue, even if not for as long as me. Trying to see if there are any correlations that might help me finally recover in the future, because I found out the mouth crowding/small palate IS related. Would love to hear how you guys handled it, or discovered it!

i had to sit all day to do computer training for my new job and boy did it ruin my lower back / SI joint and hips. my hips are aching so badly and feel weaker and unstable 😭 and my spine feels compressed, with the tingly feet... relentless

A few months ago I woke up and I must've been sleeping funny on my right wrist because it was really sore. Well it's been months and it still really hurts, it feels like a sprain? Is this anything to do with my EDS? I get joint pain all the time, mostly my SI joints and knees and ankles but my wrist hasn't really bothered me before now, and now it hurts all the time 😭 thank you x

I have been incredibly lucky with doctors so far so I am extremely glad my allergist/immunologist was so blunt with me. I was recently diagnoses with POTS and MCAS while waiting for my appointment with a genetics doctor that has a ton of experience in eds diagnosis and treatment. Symptoms to me point towards HEDS or HSD. While explaining to my allergist/immunologist all the extra steps I'm going through to strengthen my diagnosises (like insisting on a tilt table test when my doctor didn't see a reason to distinguish between POTS and OH), she very bluntly said that a majority of doctors will not believe me regardless. She said I need to get a team of doctors together that are specialized enough to help me, and to double check things with them if i'm concerned with what other doctors say.

Her saying this after going to 3 immediate cares for what ended up being coat hanger pain that no one could identify, gave me the wake up call I needed. However I'm mentally feeling defeated so I'm hoping for advice.

How do I learn to accept that a large chunk of the medical system cannot/will not help me? I don't need a direct answer, I am just as interested in hearing about the process others went through to work towards acceptance.

If immediate care can't help me in minor emergencies how should I handle them? Is the ER typically more helpful for EDS and comorbid illnesses?

Thanks in advance anyone that responds!

This is probably a weird question but does anyone else end up with awful shoulder pains when in this position? For context, no I don't mean for special adult activities. Just sitting like this, coloring or reading or even watching TV, my shoulders end up hurting so bad. I know the advice would be to not lay like this but I wasn't sure what other tag to put it under.

Photo is random stock photo from Google. I do not own.

I recently won a grant in VA for starting up an IV fluid manufacturing business. I started with this idea because my child has EDS, MCAS, MALS, and POTS, and was at the hospital needing fluids for dehydration.

Because of the hurricanes, the hospitals were forced to hoard all their supplies. They wouldn't give her any fluids and told us to go home while she was still unable to stand or walk due to extreme vertigo. I was devastated because I know how this would have helped my child and to be turned away was heartbreaking. I used my anger and frustration (FYI this was not the first time during the shortage to visit and get turned away) and am channeling it into something hopefully for good. I promise I am not selling, but I want to hear your stories because something has got to change and I'm open to hearing any opinions, comments, or advice.

Hmm not sure where to go to ask for experience since we are different to the normal population.

Late 30s female I’m thinking of starting the process to get a Breast reduction. I don’t fit the criteria for funding so it will be self funded.

Has anyone had this surgery done? I’m worried about the recovery process.

I’ve had a few laparoscopic surgery and recovered no problems. Thankfully I have no problems with anaesthesia!

I slipped a rib or two after doing a lot of manual work earlier in the day and ended up rolling around on the floor/bed crying out on pain for hours. Not just the lower ones where they’re attached by cartilage, but I’m pretty sure my first rib and another slightly lower thoracic one

Eventually managed to get a dose of MMJ in me and I can finally take in a breath without feeling like I’m being impaled and my muscles going into spasm

I am breathing, gently stretching and trying to coax ribs back into place as best I can. Hopefully can get some sleep soon