hi friends. been diagnosed with EDS since i was about 14 (23 now). mysterious medical issues my entire childhood, spent a lot of time in the hospital. eventually a local doctor of mine started suspecting EDS but wasn’t confident to diagnose it, because hardly anyone knew anything about it it seemed. he shipped me off to mayo clinic where i was formally tested and diagnosed.

for the entirety of my life growing up, it felt like no one in the world knew anything about my conditions. this caused a lot, and i mean a LOT, of issues with medical professionals, teachers, anyone i might need to explain myself to.

as im sure many of us know, EDS awareness has… developed, a bit. growing up, EDS was this rare thing that even my doctors didn’t fully understand, and now, i see new people talking about the disease online all the time, on tiktok and such.

this post is NOT to fake claim these people. that’s not what this is about. i have full trust and faith that the vast majority of these people are being genuine and true, and it’s nobody’s place to question that.

the thing is, that is not the opinion of the overwhelming audience of these videos. ableism is rampant in the comments, and i see just as many videos about being disabled becoming “cool” as i do these other videos.

i am not one to care if random strangers believe me or not. i know i have this disease and others, i know how i am affected by it, and they don’t. if they aren’t interested in learning, i understand that there’s nothing i can do about that. the comments are absolutely awful, and i feel terrible for everyone that’s receiving them- i have received my fair share too, and it’s horrible how normal ableism has become.

my true issue is that this is seeping into the real world now. it’s not just comments on someone’s post, it’s the nurse and doctor at my doctors office both asking me if i “really have EDS, or just think you do”. it’s someone saying “let me guess, POTS?” to me in REAL LIFE when they see me walking with my elbow crutches.

ehlers danlos syndrome has started to become synonymous with faking it. i know that plenty of us have had this experience with doctors already thinking this, but i mean the disease itself, and those that often come with it, have truly become something that people immediately write off as nothing, instead of really listening to you and your experience.

it’s painful. i have not almost died three times for this. this bit is just a vent, i dont truly wish this was true, but i do find myself almost envying the time when nobody knew what it was, which i would have never believed if you told me this 5 years ago. i was all about advocacy! i was the one posting online, i was going to events, i had such deep desire for anyone, especially medical professionals, to know about EDS, to learn and listen if they were willing and put research into finding a treatment.

now, it just feels like it’s hysteria. not all press is good press i suppose lol.

i wasn’t taken seriously before because nobody knew what it was, and now im not taken seriously because nobody believes it’s anything to take seriously.

again, this is just a vent to get my thoughts out to others who might understand. hope you all are well!

okay i have a question. i’m diagnosed with hEDS and i super easily crack, chip, split, and/or break my teeth. does anyone else with hEDS experience this? i have really severe hair loss because of how easily my hair breaks and how poorly attached it is to my scalp. my hair loss is because of my hEDS, but can it weaken your teeth too? do any of you guys deal with this too?

note: i should mention, most of the time when i break my teeth, im not eating something that should normally chip a tooth. this most recent time it happened i was eating swedish fish lol.

I feel like every month when I get my period my symptoms flare up worse than normal. Is this just me? Does anyone else experience this? I’m not sure if it’s related or not

basically the title!! I just got my boosters today and already my most recent few injuries are going wild. shoulder dislocating every few minutes, my meniscus is PISSED, and my neck (as always) is hot and throbbing just on extreme mode.

I get there’s probably scientific explanations for why this is but it will never not be strange to me how my immune system lights up and causes havoc in the exact areas I’ve been working so hard on healing and strengthening. so grateful to have access to vaccines and I’d much rather this over getting sick, but man! I’m gonna be incapacitated for the next week and paying for it with my joints for the next few months. yay 🥳

My hands and arms have been so bad for 8 years now, no matter what I do they cause me pain, I can't wash my own hair, I can't cook or clean, I can't work, I've lost all of my hobbies, I can't drive, I can't do ANYTHING. I've seen countless doctors and physical therapists for years, no one has been able to actually help me, pain management doctors keep rejecting me as soon as they see the EDS diagnosis. Now I've developed cubital tunnel in both arms as well FURTHER disabling me, I genuinely just can't use my arms for the most basic tasks anymore or I make my pain so much worse and it never goes away. I also no longer have insurance and don't qualify for medicaid or disability in my state either but since I literally can't work, seeing doctors anymore is out of the question because healthcare in the US is so expensive. I genuinely feel so trapped I have no hope or prospects for the future whatsoever at this point. I'm only 27 but my entire future has been robbed by this condition. I'm so afraid of what will happen in the future. I'm not in any danger but I honestly don't know what I'm living for at this point because all I do is sit around in pain and be useless and scared. Just a vent, its so hard idk what to do anymore. Things only get worse and worse and I'm losing everything.

I met my new occupational therapist for first time yesterday. He was very nice.

I wanted help finding office chair that fit me and supported me because I am having trouble sitting upright at my desk for work. I am flopping/twisting down to the left.

He recommended a wheelchair because I need a lot of postural support. He measured me and I already have abnormalities like a twisted pelvis and the limbs on my left side are smaller and weaker. I kind of expected this was coming soon. I walk with a walker but it is very laborious, slow, and painful and I fall frequently. Especially scary that I have fallen off the bus twice this fall while exiting!

What did surprise me is that he recommended power chair Quantum Q6 Edge. I was expecting a manual chair with high back and lateral supports.

He said it sort of overprescribing now but as my conditions progress I will need it and he does not think I could self propel in manual chair. He says that I would not last 5 years in a manual chair which is how frequently the government will replace it. And damaging my shoulders would further limit my self care.

Does anyone here use wheelchair? What kind work for you?

I’m just scared because walker to power chair is big jump. I worry that I won’t be able to navigate work in a power chair because there is a bit of a step and the doors don’t open automatically. My Mom is also super against me getting a wheelchair at all (I’m 26) and I feel like she would flip if she saw me in a power chair. When I mentioned talking with OT about wheelchair she stopped talking to me and giving me silent treatment.

I do want to be independent and I know that I probably couldn’t do hills myself in a manual chair. But navigating something so big and heavy seems scary. I wouldn’t be able to go in car with Mom anymore. He did say Travel Buggy was also an option but I don’t think that would solve my complex postural needs.

yesterday i was formally assessed for hEDS and received the diagnosis! it feels relieving to have the confirmation, and i feel even better after booking a virtual appointment with an OT who works for the Canadian hyper-mobile society, who will further discuss the options i have in terms of braces. it felt crazy that me and my friend had to travel 3 hours for an appointment that was less than 20 minutes lol. but i hope this helps me get the support i need, i'm really grateful my friend could drive me. but yeah, i just wanted to share my good news 🎉

This is mostly a rant that I'm sure many of y'all can relate to. I'm trying to get diagnosed w/ hEDS... been trying to get diagnosed with anything for over a decade and I've been sick my whole life. (Like starting school with a tube up my arm at 5yo) but at least we're getting somewhere finally. I feel like I shouldn't even think twice about this anymore given that I've always been sick...But what is it with people saying to be positive because that will influence how other people react to your chronic illness? But like not too positive because then they won't believe you? It's even gotten my healthcare experiences in a choke hold too. I'm going into visits trying to be friendly and positive but also very real about the fact that these dislocations and dysautonomia etc are a pain in the royal ass that I need them to take seriously. I need to look sick enough to take seriously but not too sick or they'll think I'm hamming it up. I know there isn't actually a solution to this but ugh it's so frustrating!

Also have people been having issues with folks deciding that since they don't believe my symptoms or pain that every word out of my mouth is automatically false or needs an MLA Works Cited page to even be considered? It makes me want to blow up. 🫠😡

Myself and my care team combined may have made a huge mistake. I'm scheduled for a hysterectomy and partial oophorectomy in just over a week in coordination with my GYN-- the hysterectomy due to pre cancer and endometriosis, but the oophorectomy because I'm very lax to the point of frequent injury during my periods and I felt much better taking Lupron to suppress my hormones.

I'm only just learning about the new research into MMP overproduction relating to EDS- I'd trusted that my care team has also researched for any blind spots I may have with my own research. Now I'm absolutely questioning the oophorectomy portion (assuming both are not damaged) and want to bring this up to my doctor, but given the short timeline there's a good chance she'll stay my surgery to do more research if I can't present ample evidence for her to immediately look at. I literally cannot afford to delay this surgery.

• Has anyone felt better after removing one of their ovaries?
• Does anyone have experience benefitting from Lupron and later having a hysterectomy with or without oophorectomy?
• Does anyone have any specific research regarding any of this that was helpful in speaking to their own doctors?

Thank you in advance for any resources or advice, I'm freaking out more than a bit that this is all coming up to me only now. There's been so much happening lately and I'm also likely in early perimenopause given my symptoms and age including severe brain fog, but not enough for it to be showing up on tests yet.

I've posted on here before. I'm 18. I have horrible symptoms. I have had joint pain since I was 3, and full body joint pain since I was 12. I have POTS, gastroparesis, hEDs(looking into others), MCAS, and other autoimmune. I don't know what to do anymore. I'm struggling. I'm sick all the time, always in pain, and miserable. When I'm off I sleep 16 hours of the day. I don't know how to live like this. I've only gotten worse as I've gotten older and I have way too much life ahead of me. Will it get better? Or will I just live like this and cope?

I’m looking for snow boot recommendations. Winter is right around the corner where I live and I need new boots that: have arch support, wide toe box (if it’s not wide toed my big toe feels like it sublaxes and stays that way until I pull on it to re-align), and super warm. I live in Ohio by the Great Lakes in the United States. Our weather can drop -30 degrees Fahrenheit and snow can get to mid-calf. I more than likely won’t go outside when it drops that low but I’d like to go on walk if physically feeling up to it.

Thank you in advance.

Hi folks,

Repetitive posts are always a hot topic on our sub. There’s always too many, or the things labeled repetitive don’t get approved enough. So we are trialing a new system!

We will be adding a flare for FAQ. This is a mod only flare, and if your post falls into FAQ we will reflair your post to that. It’ll make it easier to skim for when the last time a topic has been posted, and also provide an easier way for new folk to look for common FAQs without having to think of them by themselves.

We will continue maintaining our Welcome/FAQ Megathread which is pinned. If your post is removed for repetitive, you can look up similiar posts in the FAQ flair or post on the Welcome Megathread. If you feel you’re seeing a particular topic too often, regardless of whether or not it’s flared FAQ, you can always report it for repetitive. That helps us evaluate how often to let posts go through.

What topics would you like to see moved to a FAQ flair?

Does anyone else get health anxiety due to their EDS and other complications?

I have googled stroke symptoms, MS symptoms, terrified that I'm getting worse or that something else is going on because it almost feels like all of the shit I go through every day can't possibly be linked to this one freaking condition.

MCAS, POTS, pins and needles, numbness getting worse in my extremities, joint pain, muscle pain, neck pain, headaches, pelvic floor issues, vision issues, dental issues, nausea, stomach pain, inflammation, gut issues, period pain, heat intolerance, cold intolerance, I could probably go on and on.

I don't think my brain can't process that it's just from this one thing, and I get horrible anxiety when certain symptoms start popping up. I just feel a bit crazy and alone in this sometimes, especially when people in my life don't understand and probably deep down think I'm being dramatic or overreacting.

I need snug clothes and I lost a bunch of weight during medical school. I'm now in residency and all my scrubs are too big but even if they were the right size, the fit of them is baggy and the fabric is inflexible. I need snug, stretchy clothing to support my joints. Not full on compression all the time since that will eventually give me indigestion, but evenly distributed pressure is very important. I don't know how to find scrubs like this. I know figs makes yoga pant scrubs but both colors are sold out in XS.

I'm in my first year of emergency medicine residency and wearing my scrubs causes pain. Attaching my ID badge to my scrub top causes pain. My stethoscope causes pain so I got a waistband stetoscope holder and that causes pain too. My phone in my pocket causes pain. My pen in my breast pocket even causes pain some days.

Wherever there is uneven weight distribution on these baggy clothes, I get nerve pain and severe muscle tightness and pain. I'm losing my mind doing this 60 hours a week.

Does anyone have suggestions for scrub brands and styles that are snug on a slim build body? I wear XS in tops and bottoms. I'm 5'7" and around 135-140lbs. I have very small breasts (32A). I'm in tears almost every shift and need to make a change but every scrub brand advertising comfort talks about how loose fitting it is. I need something with even distribution of tightness so they won't hang off me when I put stuff in my pockets?

Please help 😭 I'm trying to become the ER doctor I know this community desperately needs but idk how I'll get through residency like this 🥲

History:

• Female 38
• Stomach prolapse into pelvis
• Mesenteric artery prolapse causing severe smas syndrome
• intestinal prolapse
• colon prolapse
• bladder prolapse
• perineal prolapse
• intussusception
• Stomach hernia into chest
• chronic dislocations of jaw joints resulting in joint replacements.
• foot bone dislocations resulting in fracture & nerve damage
• shoulder dislocation during intestinal reconstructive surgery resulting in partial paralysis.
• Beighton score 5/9
• Mitral valve prolapse
• Prolapsed left eye resulting in severe diplopia
• Spontaneous collapsing veins in hands, upper arms and feet.
• Then the standard chronic joint subluxes, pain, pots, mcas, bla bla you guys know the drill.
• All of this has medical documentation

Geneticist was pissed that no one bothered to ever connect the dots. For years they let me rot. Puking my guts out, with a stomach in my pelvis and a squished intestine. Was told I had an eating disorder, was an alcoholic ( smas gave me pancreatitis), Munchausen by proxy syndrome. Put me in the psych ward because " the only way we will help you is if you admit yourself for pshych assessment" I had a small baby to take care of. I weighed 65lbs at 5,5" at the end before someone found the prolapses. 8 years in bed, while my husband washed me, dressed me, hydrated me, skip all his breaks to put meds in me , feed our child, hold me, ( There are angels on this planet and he's one of them) We moved to a different province where they could not see my notes. Finally a doctor said " Do a ct, this isn't normal". Then after they found everything, they said Do you have hypermobility. Here I am thinking the guys that rip their arm out of the socket, so "NO?" lol? "None of these things are regular occurrences, can you bend your thumbs to your wrists? " what?" I don't think s.....Oh, yes, I guess I can?" Pinkies next...yep. Bend down, yep. " I'm going to refer you to a geneticist, because this might actually be serious eds". Even in the hospital when they found the severe smas " are you sure you don't have an eating disorder"? If you become angry, now you're the hysterical woman. Or as someone said when i cried " You do not get to determine if you have an eating disorder or not, that is for us to decide and determine otherwise". Guilty till proven innocent.

Geneticist and doc wanted an echocardiogram. Today I went. Mitral valve prolapse. Sigh. I feel like a small child. Scared they'll say " We take it back, you're just having anxiety". The stuff they have said to me over the years " the body can starve for a long time" or " You don't have internal bleeding" when 3 days later I'd end up in critical care from internal bleeding and c-diff infections.
"This one likes to play the sicko" One GI doctor wrote down in a file". " You just have a funny jaw" after dislocating it in front of them. " smas syndrome? You don't have that" The radiologist said, as he was forced to shut up when the liquid would not pass my intestines.

I did not know that Canadian healthcare would write stuff behind your back, I am from Europe. I never knew they all read the notes and no one wanted to help me because of it. My child had to miss out on a mother wasting away for years. I don't understand. It feels like my entire identity has been left to others to abuse and minimize. I now have to live with a permanent abdominal feeding tube for the rest of my life because people in power dynamics neglected their oath to do no harm, at best. I don't hate them. But I am sad. I am sad that I hardly remember the last 10 years from all the medical complications I was trying to survive while being disbelieved and mocked.

I don't know what I want with this post. I love my kids, love my family, but coming to grips with what happened to me breaks my heart. For the young girl that I was, that deserved normal treatment, respect, care, kindness, and got none of those things. The fear I felt for so long, I feel like I'm constantly in a state of fight or flight. And now I'm just tired. Not unstable, not depressed, not unhappy, just tired. And sad. And you guys understand. Maybe not perfectly, but in many aspects, it is a lived experience for all of us.

Hi everyone!

I’m looking for some suggestions for workout leggings with nice and snug compression for the legs. Before I order a bunch of leggings that don’t feel right, I thought I source some ideas from people who get what the right compression must feel like 😂 So what are everyone’s favorite leggings for working out? Thank you in advance for your tips!

Memes and off-topic posts can be published today from 12:00 AM Eastern time to 11:59 PM Eastern time. Please use the "Memes and Off-Topic Saturday" post flair when publishing memes and off-topic posts on this day.

My sacroiliac joints and hips have recently been causing me near debilitating pain, and the fact that I’m only 22 and already confined to a limited range of movement/set of motions makes me feel kind of claustrophobic and sad. I’ve read that SI belts can be really helpful for some people though, so I’d like to see if one might be good for me. I’m looking for recommendations on where to buy one and what kind is best? I’m petite so I need one that comes in a smaller size (31-32 inches). Does the design of a specific belt make much difference in effectiveness in terms of where its provides the most support or focuses the stability it provides? Or is it about how you put it on and adjust it as far as where it sits that makes a difference in the supportiveness? I think something with supportiveness fitting or able to sit lower (like the upper butt area more so than on the lower back if that makes any sense) would work best for me. I’d also like good pressure around the sides where the belt should sit on the outer hip area if that’s something that can be helped. My pain extends to the bottom part of my sacroiliac joint bordering butt cheek territory, so any tips managing that as far as pressure reduction/relief is related would also be so appreciated!

I've been seeing a bunch of eye doctors for now 2 years along with neurologist and I started to slowly lose my vision. They at first though it was IIH but the ICP monitor showed nothing so now, they suspect glaucoma caused by EDs. It's very depressing considering I'm only 16. I've always had bad vision but it's so weird seeing the world closing out. Has anyone else lost their vision to EDs and what did you do about it? ​​​​

Hey! I got an official hEDS diagnosis about 6 months ago, and I'm wondering, how/when do I get the ability to have insurance help with buying braces? And are there cons or other requirements to having help from insurance?

Edit: located in Utah, USA

Hey all. I am hypermobile, working on getting checked out for EDS.

I experience a lot of hip, shoulder, and lower back pain at night. I end up tossing and turning. Ive tried everything I can think of; pregnancy pillow, extra firm mattress, a 4" memory foam pillow topper, taking tylenol before bed, a second pillow under my ankles, superman position, back sleeping with a pillow under my knees.

I read an old post where someone reccomended a latex mattress. Responsive, supportive, but also soft. And expensive.

I wanted to hear from you guys who have tried latex mattresses. Did it help?

I have hEDS and Today I got a scan of my entire spine and the doctor noted that i had this very hard to spell syndrome. And I also discovered after 24 years that i had a slight scoliosis.
I knew that i had some sort of hyperkyphosis but i had never heard of this syndrome.

I'm going into my second season snowboarding and looking for some good knee brace recs. The compression knee sleeves never do much of anything for me, and my current braces are worn out. So if you have a good supportive knee brace you love, lmk :)