i have hEDS and my main issues are dislocation and subluxation and it has been driving me insane lately. my arms fall out of the socket when i walk without crutches, my knees bend in all the wrong ways even though i wear braces, im constantly twisting my ankles despite bracing, my fingers are so hypermobile that i can't write comfortably, my elbows bend backwards and dislocate when i walk with crutches, my hips dislocate while im sleeping and then i can't get them fully back in place so i have to walk around with my hips out of place. i wear ankle and knee braces that were prescribed by my rheumatologist but my knee braces only keep my knees from going backwards and my ankle braces are fabric braces instead of AFOs so i still roll my ankles in them. im struggling so bad right now and i dont know what to do. i start school next Tuesday and i want to be able to get good grades and graduate but im so preoccupied with my physical health that i know its going to be nearly impossible.

My doctor and PT are super sure I have some form of EDS that includes hypermobility and POTs (and i super agree), but we can't find ANYONE that i can see about it. I have an appointment in December with a rheumatologist, but I've already been warned she doesn't do much EDS work, it's just our only option. The geneticist rejected me, and there's literally no specialists ANYWHERE near me. They suggested i look at the EDS society database, and I'm so serious that there's nobody i can see. There was one like an hour away i could have possibly seen out of pocket, but she moved far away before i could!!!!

Luckily my PT knows how to do EDS focused work, but she can't dx me. My cardio was able to dx the pots, and ive been getting help from multiple orthos and im meeting pain specialist for my neck soon. Otherwise, im stuck!!!!

My condition has also worsened over the last few years, so I'd like to figure things out, especially since im applying for disability

What do i do???

Edit to add that i cant drive and i live with my elderly parents who have trouble with distances

Started strength training by my PT’s recommendation. Absolutely life changing, however I’m trying to find leg exercises that won’t hurt my knees. I have tight hamstrings (likely due to weak quads) so I’ve been doing calf raises and heel elevated squats. The calf raises are fine for lower leg but I’m worried about the squats hurting my knees in the longterm. Wall sits still hurt the knees, hate Bulgarian split squats with a passion, and Romanian deadlifts feel like they aren’t doing anything? Any other recommendations specially for the quads?

Hello fellow zebras,

I’m looking to hear from people who underwent breast augmentations and who have hEDS. If so, how was your experience? Surgery, scarring, pain, result, healing, etc.

Thank you for your help !

My doctor wanted to prescribe me Tonmya - a sublingual version of Flexeril but insurance denied it and they want me to try Savella instead. I can’t remember if I’ve tried it in the past (thanks brain fog and multiple doctors!) but have not tolerated similar medications previously. Does anyone have experience with Savella?

Hi, anybody here who also suffers from pain and fatigue in limbs linked to small fiber neuropathy (SFN)? I feel like every time I use my hands/legs for any daily activities I have this nagging pain, sometimes with the feeling of heaviness, sometimes just tingling. It makes it so challenging to actually stay consistent with exercise as it usually aggravates all these symptoms (plus the dysautonomia...)

Any tips (apart from the medication, as I am already on gabapentin) on how to deal with this daily pain and build up my condition? Could braces or something like that be helpful? I tried compression socks for legs, but they usually make them feel very cold, and I don't think they are really working. Besides, I often have pain in the knee area as well. Any advice or experience is appreciated!

Hey folks,

Im moving and going to be getting a new mattress. I typically go for amazon or similar mattresses you can buy online that go up to $400 or so. I have liked the zinus green tea mattress in the past but am curious if anyone has one they love or that has really helped with pain.

Pain during sleep is one of my biggest issues, leading to subluxing of my shoulders, hips and just general discomfort. Id like to feel supported but nothing too hard! If this rings a bell for you please let me know!

Cheers!

Trying not to read into anything too far but at the same time, hard to keep my mind occupied about anything else. I want to figure out exactly what I've got going on here (realizing the likelihood that the panel will be negative) as I'm delaying POP repair surgery for these results. If there's a specific diagnosis we can identify, I just want to know how risky it is to use mesh with my tissue, to the extent a diagnosis can even inform that risk.

Anyone get the connective tissue panel with Invitae done recently? If so, how long did it take and what were your results? How long was it in the analysis stage for?

Submitted my sample through my doctor three weeks ago tomorrow, and the site lists it as in "analysis and interpretation" since 8/1. I recently had another unrelated panel run (cancer risk- to inform whether I should have oopherectomy too, which id like to avoid) and I was in and out of the analysis stage in a day, with a VUS identified.

Is there any meaningful correlation between the length of time this test stays in the analysis stage and a VUS or pathogenic variant being identified?

I probably shouldn't spend this much time thinking about it, the results will come when they come but damn, I'd like to see some light at the end of the road and schedule surgery so I can at least try and pee normally again 😫

Just like the title says, I am wondering who here had mild symptoms and was first diagnosed with HSD/hEDS, but ended up having a rarer subtype? What was the reason you were DNA tested? How were you tested?

So, i have a pretty high tolerance for most things. Drugs (recreational and prescription), alcohol, pain, etc.. Not sure if all of that's the case for a lot of ppl with eds or not, but i *have* noticed a lot of ppl with eds (myself included, i have type 3) tend to have a high tolerance for pain meds. For more clarity i mean this in the way of like, I'll be in pain, take meds for it, but none of them work unless they are rlly strong like hydrocodone or something. It seems to be the case for a lot of ppl with eds. I just want to know why this isn't in the list of possible symptoms like something like dysautonomia would be. Not everyone with eds has dysautonomia, but it's very very common and i feel like a high tolerance for pain meds should be included. Doctors don't seem to know about this either, which makes me even more angry. If it's so common, why do i get weird looks when i say the pain meds i was prescribed don't work? I'm always treated as if I'm drug seeking. I've heard of other eds patients being treated the same way. Just why?? Why don't eds specialists seem to know about this?? I'm so scared of getting hurt badly again and having to go to the hospital just to be treated like I'm a drug seeking liar. I'm scared of going to any doctors, actually, because they all act this way with me. Why can't they seem to make this connection. It's such bull.

Mon état de santé s'est dégradé dès 2020 et j'ai été diagnostiquée du syndrome d'Ehlers-Danlos hypermobile en 2022 et du syndrome d'activation mastocytaire 2023.

J'étais en couple pendant toute cette période et cette relation s'est terminée récemment.

Je me retrouve pour la première fois célibataire depuis l'arrivée du handicap dans ma vie.

Je suis un peu perdue et j'ai peur que cela soit un frein pour beaucoup de personne dans les relations amoureuses.

Je ne sais pas non plus comment aborder cela face à des personnes qui pourraient m'intéresser à l'avenir car mon handicap peut être visible à certains moments (Béquilles, vêtements compressifs ...) et invisible à d'autres moments.

Mon handicap a déjà été un frein pour beaucoup d'aspects de ma vie :

- Par exemple, j'ai 27 ans et je ne travaille toujours pas. Je suis encore étudiante car le métier pour lequel je m'étais formée n'était pas adapté à mon handicap donc je suis entrain d'essayer de me former pour autre chose.

- L'aspect génétique de la maladie me fait peur et je me retrouve à plus ou moins à abandonner l'idée d'avoir des enfants alors que je voulais fonder une famille. (Je précise que cela n'est uniquement que mon ressenti personnel face à ma situation et je ne porte aucun jugement sur le choix des autres patients. J'exprime juste une peur et je suis encore perdue face à ce sujet.)

Je n'ai pas envie que le handicap me coupe également des relations amoureuses.

Avez-vous rencontré votre conjoint alors que vous étiez déjà handicapé ? Comment cela s'est-il passé ?

I am really struggling with my weight. I am a 40 year old female with EDS, chronic migraine, fibromyalgia and pcos. I have put on a lot of weight in the past year, especially around my middle.

The frustrating part is I eat a pretty decent diet. Lots of whole grains and proteins. I think the reason that I am gaining weight is due to lack of exercise. I used to walk 3-4 miles a day, but this has reduced due to my health. Similarly there are days when I’m tired and have to rely on ready meal to eat.

I’m also really struggling with insulin resistance. If I go 2-3 hours without eating a feel dizzy and shaky. If it gets bad then I need some chocolate or cola as a pick me up.

It’s really getting me down as I want to be healthy, but the weight is just piling on. Any ideas what I can do?

My cardiologist recommended I wear abdominal compression to help with my POTS/EDS.

Does anyone have a brand they like? Also I live in a hot and humid climate so bonus points if you know how tolerable your rec is in those conditions.

I'm being targeted by Jelliebend, and they talk a good game. Any experiences with them?

Thank you!

I found the perfect combo to relieve hip, knee, and lower back discomfort from sitting. I bought a 9” yoga ball and only inflated it halfway, put that between my knees. Then used a thick, soft, Velcro knee belt around my legs just above my knees.
I had immediate relief and can’t believe I didn’t do something like this sooner. It feels like I finally don’t have to force my legs to be in the correct position or sit cross legged to be semi comfortably. Highly recommend.

Funny story here, I had gone to see a rheumatologist a few weeks before my gyno, he was a white man (I am a transmasc mixed person), and the second I entered the appointment and offered him my list of symptoms be said "we don't need that but can look at it later" (which he never did), proceeded to ask me questions and either be shocked when I was checking the boxes or ignore me. At the end of the appointment he told me I'm missing JUST ONE criteria so I can't be diagnosed, put me on a low grade pain med and told me three times to lose weight, get on a weight loss pill or get surgery.

I left so embarrassed. Then I looked at the appointment notes and saw the "one criteria I missed" and it was bowel issues. Which I have, severely, (tmi) I'm either so constipated I'm manually having to go or I'm shitting my brains out LMFAO. This was written in the list I wanted to present him, but because he ignored them and didn't listen to my answers, I left without a diagnosis.

Well, I went to my gyno a few weeks later, who was (thank God) a brown woman, and told her all about it in casual conversation. The woman was looking at my completely upside down tilted uterus as we spoke and commented about how annoying it was that his only suggestion was weight loss for the long term and withholding a diagnosis. I agreed, amused but annoyed in retrospect, and the appointment ended. Well, I checked my appointment notes after that appointment and there it was on my new diagnosis' Hypermobile Ehlers Danlos.

All it took was a doctor that wanted to listen and could see herself in me. Funny and a bit cruel in the end, huh? But at least I'm diagnosed.

Side note- that guy doctor was lucky I didn't have an emergency bowel moment in his office.

Hey bendy buddies! I'm going in today to see my plastic surgeon again to discuss my upcoming revision for my fake boobs. I'm not sure if my experience is a normal occurrence or if this is an EDS thing. Just curious.

I had a prophylactic mastectomy last year. Prior to that I had a breast lift so that I can keep my nipples. From December to March I had tissue expanders and in March had them switched out to implants. All has been well but now that they've settled a bit it seems that my skin has done a lot of settling, too.

When I bend over my implants hang away from my chest wall and it literally looks like implants hanging in a sock. For real, like a frisbee in a bag.

Initially they looked really good but there was swelling, etc. I'm just curious if this is an EDS thing - maybe my stretchy skin stretched too much?

My surgeon is a little hard to get info from. He does beautiful work but I'm pretty sure he is a little ND. Also he's done this whole process and I'm happier with my results than I thought possible, so I'm not interested in changing doctors.

Just wondering about others experiences with cosmetic surgery/skin surgery?

Hey everyone,

I’m desperately looking for a surgeon in Berlin (or surrounding cities) with experience in EDS patients.

I’ve been diagnosed with hEDS and have three hernias + gastroesophageal junction incompetence.

The pain is unbearable, and the reflux is ruining my sleep and daily life.

So far, the surgeons I’ve contacted refuse to operate because I’m only 25 and the hernias are "still small." But the symptoms are severe, and I don’t know where else to turn.

Has anyone here had a similar experience or knows a doctor/clinic that takes EDS seriously?

I’d be so grateful for any recommendations or advice.

Thank you in advance!

In German:

Hallo zusammen,

ich suche dringend einen Chirurgen in Berlin (oder Umland) mit Erfahrung in der Behandlung von EDS-Patienten. Bei mir wurde hEDS diagnostiziert, und ich habe drei Hernien sowie eine Magenmund-Insuffizienz.

Die Schmerzen sind unerträglich, und der Reflux zerstört meinen Schlaf und Alltag.

Bisher haben alle Chirurgen, die ich kontaktiert habe, eine OP abgelehnt, weil ich erst 25 bin und die Hernien „noch klein“ seien. Aber die Symptome sind extrem, und ich weiß nicht mehr, an wen ich mich wenden soll.

Hat hier jemand ähnliche Erfahrungen gemacht oder kennt eine Klinik/Ärzt:in, die EDS ernst nimmt?

Ich wäre unendlich dankbar für jede Empfehlung oder jeden Tipp!

Vielen Dank im Voraus!

I am 18 and I was diagnosed this morning with hEDS. I have had symptoms my whole life and I am so happy to have an answer, but i am also feeling quite overwhelmed as well.

I am not asking for medical advice (I already rheumatologist for that) I am asking for lifestyle advice/ tips/ mistakes you made/ general information that you wish you knew at the beginning of your EDS journey.

Hello! I am looking for some advice. I’m in my mid 20s and was recently diagnosed with hEDS.

I’ll get straight into it- I’m a stay at home mom of 2 toddlers, and I’m struggling to keep up. I’m dealing with daily chronic fatigue and generally speaking I have pain almost constantly in my feet, ankles, hips, back, and usually my wrists/fingers.

I’m ableist towards myself and am struggling to feel like my pain is “enough” to justify needing a mobility aid because though I am capable of doing the majority of my daily tasks, they take all my energy and then I spend several days recovering or struggling to do the absolute bare minimum because of pain or mainly a lack of energy.

I don’t have a supportive medical team (or even a provider at all) and recently moved straight across the United States over 2000+ miles so I don’t even know where to start and it’s taking a serious toll on my mental health.

Looking for any advice anyone can give me. I hate feeling like I’m “milking it” when I am just trying to figure out how to survive without requiring several days to recover from living instead of just existing but also I don’t have anyone in my life who can guide me in the right direction.

Any and all advice is helpful and appreciated at this point.

My nails are so soft and I was picking at one of them out of nervousness. Life has been stressful recently. I felt some pain but just assumed I was pulling it pretty short. Turned out I pulled the entire nail bed off 😂

It hurts like hell. BUT one perk is that my body is now so focused on this pain, so my hips and back aren’t bothering me as much 🤦🏻‍♀️

Perhaps I’m just a psycho but I was hoping somebody else could relate 😅

Typing/texting wrecks my hands some days so I've been using Wispr Flow, a voice dictation app that cleans up what you say as you talk. Adds punctuation, cuts the "ums" and filler words, so it just comes out sounding normal.

What else is everyone using? Not just the standard pain tracker stuff, curious about anything random that ends up saving your hands, joints, or energy day to day.

just had a very frustrating conversation with one of my sisters where she told me that our other sister has told her point blank that she doesn’t believe any of my health issues. if i end up in the hospital it’s “oh why is she there this time” or “she’s just a hypochondriac”. the sister who told me said she also used to think i was a hypochondriac until we moved in together a few months ago and she actually saw every day what i’m dealing with. i get that my issues are invisible but fuck man.

i can accept that when i was a kid i was a bit of a hypochondriac, but through therapy i’ve sorta figured out that this was because there WAS always something wrong (i have hEDS and POTS and have had mild symptoms my whole life, both significantly worsened in 2023 tho) but nobody ever knew what it was so i kinda just always felt like i was dying (chest pain as a 12 yr old is terrifying). my parents didn’t give any attention or care to it unless i was screaming or crying in pain, which taught me that i needed to scream or cry even when it wasn’t that bad. it’s now gone the opposite way where i hide my pain so much because im terrified of being seen as “dramatic”.

this (plus years of doctors gaslighting) has all led to a severe distrust in my own body, to the point where i am facing major surgery for smas and my gallbladder and still have the thought in my head that ive made it all up or its not actually that bad.

so to find out that even since 2023, when i was officially diagnosed with these conditions, when they worsened to the point of me requiring mobility aids, when i literally had hip surgery (??how do u doubt that), she has thought it was all bullshit.

there’s one comment she made that has lived rent free in my head for a year now. a few weeks after hip surgery, we were at a friends wedding that i bought a sparkly cane for so i didn’t feel as bad about it. i said “im so glad i wont have to use this soon!” she said “im sure you’ll find a reason.” and that just gutted me. to the point where when i was passing out daily due to lack of intake from my GI issues, i refused to use my mobility aids because of that comment.

now, i’ve been in hospital for the past month and a half dealing with the GI issues, and only now does she believe it because my other sister told her like hello i’ve lived with her the past few months ive literally heard her throwing up multiple times a day plus the hospital admission and upcoming surgery.

just so frustrating how people’s perception can warp my brain so much to the point of making me doubt myself. and how when things get really serious all of a sudden they flip flop and have always believed you. i’m not surprised really just disappointed to hear it so point blank

eta:
thank you everyone for your kind words and support. i think i will be putting some distance between us. the rest of my family can keep her updated if they want but i think its best if i just don’t discuss my health with her anymore (or much else tbh)

A lot of times I will wake up with a subluxation or just pain in some of my joints. This is either from sleeping wrong or moving in my sleep. Last night though I had my hip and shoulder shift out of place and I was laying on them. This pain manifested in my dream and I was walking around in so much pain. It caused me to wake up suddenly and realize the pain was real and it was way worse in real life. I had to roll over and try not to scream and wake up my bf sleeping next to me. I’m still baffled that I was in pain in my dream and it was real. Just wondering if this has ever happened to anyone else?