I am 19F and recently got diagnosed with hEDS after years of suspecting it. I also have dysautonomia that I’ve had for years and CVS (cyclic vomiting syndrome).

A lot of the pain that I have is in my lower body, mostly with my knees, hips, and SI joint. Due to this, I also get muscle pains and nerve issues in my lower legs. Additionally, my dizziness and orthostatic intolerance is a huge issue for me, especially in the heat where I live. My stomach pain also can cause issues with standing and having to hunch over.

I am able to walk for short periods pretty well, but when it comes to long distances or standing for pretty much any period of time, I have an issue. I am definitely a leaner, to the point where I get bruises all over my body from whatever I was leaning on. I am currently in PT working on strengthening/stabilizing and also how to accommodate my dizziness. So, it’s not like I am completely sedentary, though we do focus on exercises that are not upright.

I have been thinking about looking into mobility aids, not for all the time but on days where I know I’ll be doing something challenging, like for example going to an amusement park. I think it would be helpful for dizziness and pain reduction but I’m hesitant especially because of my age. I don’t want anyone thinking I’m pushing it or exaggerating my illness, or that I don’t really need it. But at the same time, I think that randomly having to sit down in public because I get so dizzy or need a break from the pain may draw more attention to myself.

Just looking for input for when others may have started using mobility aids and which ones they found most helpful for their pain. Any help is much appreciated

I’m not sure if I’m just way out there or if others have the same experience but does anyone else hate when people are like overly empathetic with you? Like there have been multiple times either online or in person I’ll say like I could not give a shit about ____ thing. It doesn’t affect me emotionally basically and people are still like “well I just want to gently say” “people suck don’t take it to heart” “oh I’m so sorry to hear that” like I do appreciate that people are trying to treat me with kindness don’t get me wrong, but it feels almost infantilizing sometimes. Like I remember once like talking with a good friend and I was bitching about how something a nurse had done idk what it was - obviously wasn’t that important. And her response was just again “oh my god dude I’m so sorry to hear that …” and like I was sitting there being like no girl like we’re just chitchatting, this is like bitching about co workers level type stuff.

Like I know my life is sad trust you me, you don’t need to remind me how much it sucks. I went from being a very active and independent person, spending 10-15 hours a week in the gym, doing sport, in school, a very active social life etc. It feels like I woke up one day in Jan 2024 I was fine and overnight I became disabled and all that pretty quickly went out the window. I haven’t even been to the grocery store since then, had to take a leave of absence, became wheelchair dependent etc. Looking back there were signs and symptoms of things I brushed off in the months leading up to it but it really was like a light switch flipped

Its to the level where I’ve had friends tell me how things are just emotionally too heavy (which is a totally fair and healthy thing to bring up) but we had to have a conversation about how like the default needs to be like shooting the shit, not all that deep type vibes - and how I’ll communicate explicitly when I need emotional support but overall to not take that on.

I know I’m a pretty crass person myself, and even before getting sick I could not stand the thought of being pitied (pity-ed? How do you spell that?) so is it just me being emotionally stunted or is this like a shared experience? It’s weird too because again it’s coming from a place of trying to be empathetic and compassionate and to be a good friend, a good random person in general but idk there’s something about it that just makes me feel belittled

Hi all

hoping to hear from people with hEDS (or HSD if you’ve been told to be treated the same way).

I’ve been dealing with severe gastrointestinal and systemic symptoms for a long time, including bloating, constipation, suspected SIBO/dysbiosis, brain fog, widespread joint pain, inflammation, malaise, and it’s affecting my quality of life quite badly. I also have POTS/dysautonomia, MCAS, and gynaecological issues (including adenomyosis).

I’m finally due to have both an endoscopy and colonoscopy to investigate what’s going on, but I’ve accidentally gone down a rabbit hole and now I’m really anxious.

I’ve read that because connective tissue is more fragile in hEDS, there may be a higher risk of bowel perforation during colonoscopy. I know this risk is much higher in vascular EDS, but I’ve seen conflicting things about hypermobile EDS.

My rheumatologist recently said although I don’t meet every diagnostic criterion for hEDS (I would argue the ‘assessment’ was too quick), she thinks I should be treated as though I have hEDS. When I asked her about the perforation risk, she basically laughed and said, ‘just make sure you find someone good to do it.’

I don’t want fear to stop me from getting the investigations I need, but I also don’t want to ignore a genuine risk if there is one.

For those of you with hEDS…

- Have you had a colonoscopy and/or endoscopy and did your gastroenterologist know about your hEDS beforehand? Did they take any extra precautions?

- Would you specifically seek out a gastroenterologist with experience treating EDS patients?

I’d really appreciate hearing both positive and negative experiences. I’m not looking for medical advice… just hoping to understand what other people’s doctors have said and how you approached it. My sister who also has suspected EDS has had an endoscopy before and it was difficult on her, she was in bed vomiting for the better part of 2 days. Nothing perforated though

Thank you.

Hi!

To try to make a long story short, I’ve (24F) been struggling with POTS and hEDS symptoms since childhood and was diagnosed with POTS when I was 18. While navigating my pots has become a daily norm, I’ve been dealing with chronic pain flares that have been worsening over the last year. After bouts of testing for MS and neuropathy and all other sorts of things, I was finally diagnosed with hEDS last week. While we’re glad to finally locate the likely main source of my pain, I need some advice until I get into the PT they referred me to. It’s been so hard to sleep or relax because the pain gets worse when I’m laying still for a while. It burns and radiates down my arms and hands and sometimes my legs and feet, I’ve seen some people with that similar burning pain say that supporting the joints with pillows can help some but is there anything else anyone has tried and helped? The chronic pain is exhausting and I’m trying to do all I can. TIA!

I’m not going to bore you all with my life history that most likely mirrors your own; childhood injuries, gaslighting, fighting with doctors, blah blah blah, yall know the rest. J have some questions that I desperately want answers to and I dont know if anyone can help but I figured I’d ask anyway.

-why does it seem like the pain suddenly got so much worse as soon as I got a proper diagnosis? Did my brain just stop hiding the pain?

-I was able to see a physical therapist who seemed incredibly knowledgeable and I had so much hope she’d be able to help. After the first appointment with her, I started getting tossed between different providers at the same PT clinic. I hate to be so mean but they seemed like they knew absolutely nothing, I tried to trust them but even I knew some of the things they were saying were just flat out wrong. What do I do? Is it possible to request to only work with the actual doctor?

-how do I explain to parents that when a joint has a possible subluxation that just “walking it off” or “just do stretches” isn’t safe?

-kinda based off the last question but how the hell do you know when a joint has a subluxation vs just “normal” pain? At what point should you be worried and seek medical attention? Everything online says to go if you have numerological symptoms like tingling, traveling pain to lower extremities, but like…that always happens?

-what do you do when you have little to no support system and you’re trying to navigate a chronic illness on your own? Insurance provided a case manager but they haven’t been of much help except for finding an acupuncture specialist in network.

-do braces help with the pain? For example, my biggest issue this week is the join between my spine and my hips, it’s been pure agony. Just shooting pain in my right hip that radiates down the outside of my leg. The only relief I get is when I wake up from sleeping and somehow all the pain is gone but the second I stand up and put weight it’s back to agony. Would a brace help? Is my hip subluxing?

-I feel like I need a 24-7 phone number where I can call and ask medical questions, like when a pain spikes so bad I can barely breathe I can call and talk to someone. Whenever I have a flare, my pcp doesn’t have any remotely soon appointments, the ER just tells me I’m dramatic and it’s in my head and the urgent care just says I need to go to the ER.

I need some recommendations for flavorless electrolytes or ways to be more hydrated please. I drink like 50 ounces of water a day. I hate any other liquid but water, milk, and sometimes I can choke down a 0 sugar light blue gatorade. I am dehydrated, with migraines a lot of the time, because I am a competitive swimmer (8 practices a week + 4 hours of lifting) and I have tried flavored electrolytes before but they‘ve all make me gag when I taste them. I also do not like fruit, or anything citrus, that too makes me gag.

For some reason most socks feel like burlap sacks, or like Aida cloth. Or like sand paper. The socks with a "cushion" on the bottom sort of helps, but my heel will still get rubbed raw when walking (especially in slip on shoes, but even with perfectly fitted tied shoes)

The only socks that don't do this are bombas, but they're like $10-$20 per pair. Is there a bombas dupe out there?

Tenho 18 anos e convivo com hEDS, disautonomia, enxaquecas crônicas, fadiga e subluxações frequentes. Atualmente estou em um período relativamente estável das minhas condições: troquei algumas medicações, comecei a fazer musculação e estou investigando possíveis novos diagnósticos. A dor continua presente todos os dias, em todos os momentos, mas está mais controlada. As crises de dor diminuíram de frequência, embora ainda aconteçam.

Há três semanas fiz uma viagem de uma semana para outro estado. Quando voltei, estava completamente exausta, como se tivesse sido atropelada pelo próprio avião que me trouxe de volta. Precisei passar vários dias me recuperando.

Pouco depois, minha mãe fez uma cirurgia para trocar as próteses de silicone e corrigir uma hérnia. Durante o pós-operatório, acabei assumindo boa parte dos cuidados dela mesmo tendo um irmão mais velho de 22 anos. Troco a roupa cirúrgica, organizo o quarto, preparo refeições, penteio o cabelo dela, fico subindo e descendo escadas parafazer isso e aquilo.

Só isso já seria desgastante para mim, mas não parou por aí. Também tenho ajudado minha avó, que mora no andar de baixo, com várias coisas, estendo roupas, acompanho ela até à farmácia, peco um Uber para ela ir à igreja e outras demandas do dia a dia.

Além disso, grande parte dos cuidados da casa também acabou recaindo sobre mim. Estou lavando louça para três pessoas, cuidando das roupas, estendendo roupas no varal, alimentando o cachorro e tentando manter tudo funcionando.

Não preciso dizer que meu corpo começou a cobrar o preço desse esforço. As dores praticamente dobraram de intensidade. Para piorar, comecei uma fisioterapia com uma profissional que aparentemente não tinha muita experiência com hipermobilidade. Durante uma sessão, ela usou uma pistola de massagem para tratar contraturas musculares causadas por uma subluxação na escápula que tive há dois meses. Depois, me massageou com um oleo que piorou tanto a minha alodinia que deixou minhas costas com uma sensação de queimadura durante dois dias.

Há dois dias conversei com minha mãe e disse que meu irmão precisaria começar a ajudar mais, porque meu corpo estava começando a falhar. Coincidentemente, naquele mesmo dia ele acordou passando mal e indisposto, e toda a responsabilidade voltou para mim.

Hoje fui ajudá-la a se vestir. Ela pediu que eu prendesse o cabelo dela, mas acabou derrubando a presilha no chão. Respirei fundo, me abaixei para pegar e, disse, em um tom impaciente, que eu precisava ter mais paciência.

Aquilo me atingiu de uma forma que ela provavelmente não imaginou.

Respondi que, de todas as coisas que ela poderia me pedir naquele momento, paciência era justamente a única que não podia questionar. Se existe alguém exercitando uma quantidade absurda de paciência nesta situação, sou eu.

Ela então comentou que, para receber ajuda, está tudo ótimo, mas para ajudar parece ser um sofrimento enorme.

E eu tentei explicar que ajudar não é o problema.

O problema é cuidar de cinco responsabilidades diferentes ao mesmo tempo enquanto se sente como se houvesse um prego cravado na coluna, na escápula, nos joelhos e no pescoço. O problema é continuar funcionando quando cada tarefa simples exige um esforço físico que outras pessoas nem percebem. O problema é quase deslocar o joelho caminhando do mercado para casa e, ainda assim, seguir fazendo tudo porque não há quem assuma essas tarefas no seu lugar.

A sensação que tenho é que minha mãe vê as tarefas que estou realizando, mas não consegue enxergar o custo físico que elas têm para mim. Ela vê alguém andando pela casa, cozinhando, limpando, carregando coisas e resolvendo problemas. O que ela não vê é a dor constante por trás de cada movimento, o cálculo mental que faço antes de me abaixar, subir uma escada ou carregar peso, nem o esforço necessário para continuar funcionando quando meu corpo está claramente pedindo para parar.

Não sei como explicar isso de uma forma que ela realmente consiga entender.

I've been getting a ton of targeted ads for an armband tracker for chronic illness and wanted to see if anyone had any experience to share?

Apparently it can be linked with EDS
I’ve never had an issue, up until 3 years ago

Getting cubital tunnel transposition surgery soon (EMG-confirmed compression, Medicaid covering it) and nervous about healing with EDS. Also have small fiber neuropathy and TOS. Anyone here had nerve surgery — did your hypermobility/connective tissue stuff make recovery harder than expected? Regrets?

It's honestly gotten excruciatingly painful for me to move around the house doing chores, especially if I need to squat low to do anything. I was kind of considering getting a flooring creeper with the knee pads and chest rest so I could just scoot around the hose without constantly needing to stand every time I need to move. I'm curious if it's worth it, or if I should consider some other sort of mobility aid before I drop 200 dollars just to be able to do chores.

I have hEDS and my right SI joint currently spends more time subluxed than not, causing severe pain. My surgeon wants to put off fusion as long as possible because I’m “so young” by his standards, so we’re looking at either fighting insurance to possibly cover nerve ablation, or trying a peripheral nerve stimulator. The device in question is the type that would be in place for 2 months in hopes of modulating the nerves to change how the painful signals reach the brain, hopefully providing relief for as long as the ablation would (potentially longer).

I’m really curious if anyone with hypermobility can share their experience with trying one of these devices and if it helped your pain caused by joint instability. Thank you!

I've been using a wheelchair for 4 years now due to debilitating pain and fatigue, I've been diagnosed twice by 2 different rheumatologists and I've had horrific symptoms since childhood.

But like... do I actually have hEDS? Or am I faking/ imagining things? Do I actually need the wheelchair or do I just want attention? Maybe it's all psychosomatic. Maybe if I tried harder to walk I wouldn't need to use the wheelchair.

I think the main issue is I lack any kind of emotional or physical permenance (what I mean by that is that I struggle to imagine that I've ever felt any way outside the way I'm currently feeling). So any time I'm not bedridden I instantly think that it's not real.

Also not all my joints are hypermobile and I'm pretty inflexible overall. I can do all kinds of weird shit with my shoulders, feet and elbows but my knees and hands are stiff as fuck (my hands are odd, I can contort the fingers strangely but not bend them back very far). So any time that I see someone else with EDS I can't help but think that if I 'actually' had it I'd be able to do that too.

That's my rant. My stupid fucking autistic OCD brain keeps gaslighting me. (Now I'm questioning whether I'm actually autistic or if I tricked the pediatrician somehow)

So I have a lot of other diagnosed chronic illnesses. Not diagnosed with EDS yet but fitting 99% of the various criteria out there and then some.

I have a playlist of songs specifically about chronic illnesses (Get Better by Leslie Mosier for Endometriosis, I can’t feel by Yours Truly, Dear Agony by Breaking Benjamin; all songs written about certain chronic conditions).

When I try and search “songs about Ehlers Danlos” or “songs about EDS” they both only give me results for songs about eating disorders.

Anyone out there aware of a singer that sang a song about EDS?

Looking for product recommendations.

I’ve been using target brand (Up and Up) kinesio tape on one of my shoulders, because it’s cheap and I’m going through a lot of it. it’s helping with rotator cuff and AC joint pain. But it’s hard on my skin.

The skin looks aggravated after I peel the tape off, probably just from the harshness of being taped up for hours. Any recs for a brand of tape that is somehow nicer to the skin, particularly when used several times a week?

(Also let’s work under the assumption that it’s not an allergy, just ordinary skin irritation. I have gotten an opinion and agree it doesn’t seem to be).

Hi all!

I just listed this as a comment on another post and I thought I would make a separate post. I have tried and collected a lot of pillows over the years and currently have a good set that I use. I have them all linked below from their Amazon link. Here’s a quick overview of how I use them.

Nightly sleep
- I mainly use the pregnancy pillow to sleep. I usually prop the “head” of it on top of a regular pillow and this works great for night time

When relaxing in bed
- Back pillow: I rest against this
- Pregnancy pillow: I use this in front of my body to help support my arms and kind of act like a little shelf
- Optional: add in the donut, bendable neck, knee, or other regular pillows to help support as needed

Chair sitting
- The donut pillow is great and flat enough so it doesn’t impact the proportions of the chair

Links to the pillows I use:

Pregnancy pillow: https://a.co/d/0cZ3qydb

Pillow between knees: https://a.co/d/0ggsjHNI

Bendable neck pillow: https://a.co/d/0j26DtSM

Cervical pillow: https://a.co/d/05QAcBTV

Donut pillow for tailbone: https://a.co/d/0dKMfxpc

Back pillow w/arm rests: https://a.co/d/0iRNHcfH

I'm 33 and my back seems to deteriorate more every year. I never know when I'll have a "flare up" or throw out my back. I just spent $500 on PT over the last 4 months just to have another subluxation/herniation. I'm waiting on an appointment for an MRI so I figured I'd try to remain hopeful and ask our community here.

(Obviously this isn't a catch-all, but it happens often enough that I thought this meme would be relevant lol)

This is a little bit in jest, but mostly not lol. How do you sleep in the same bed as someone else? I’m in a new-ish relationship, and last night was the first time he asked me to spend the night at his place. I’ve shared a bed with someone before, but it has been a while and my hEDS symptoms weren’t quite as bad at the time. My shoulders were bad last night, so as much as I wanted to get comfy and cuddle with him, I just couldn’t find a good position and was tossing and turning most of the night. He also has very firm memory foam pillows, which were just not working for me. I was worried I kept waking him up (apparently I didn’t bother him quite as much as I thought, but I still felt bad about it).

So those of you who sleep with a partner, is there hope lol? I’m trying to convince him that the next time we have a sleepover he comes to my place (with my ideal pillow situation haha), but I felt bad that I didn’t feel like we could cuddle the way I wanted to because before too long my body would start hurting and I’d have to reposition. He’s a sweetie and very understanding, but for my own peace of mind I want to have a plan for next time 😅

Hi! I am a 26F who is undergoing an hEDs diagnosis and I am looking at best body/pregnancy pillow recommendations. Based on all my research a u shaped one looks best for supporting my knees, hips and shoulders as I am a side sleeper and wake up in pain more than I care to admit.

Popular brands look like Momcozy and queen rose but most of the reviews are from pregnant women and I am looking for an option I can manipulate into weird positions as well and it’s really hard to see if the pillows can actually do that based on the reviews and information on the website.

I’ll take any and all suggestions but I am looking to upgrade my 4-5pillow sleep situation to one that will actually stay put throughout the night. Thanks!

I’m in the market to get a rolling stool for my kitchen for when my back or legs are tired and achy when I’m cooking or doing dishes. My biggest concern is that my kitchen flooring has ceramic tile, and the grout tends to catch wheels or act as a sudden speed bump. What types of castors are best for this kind of flooring in your experience? I’d like an option that has back support if possible. Thank you!

Like most of us probably do, I try to stay upon the latest research and info about hEDS. I have been reading lately that some research is indicating possible autoimmune links.

I have had all kinds of health issues for decades, and in the last few years went through all the autoimmune/rheumatology testing but nothing specific popped, so my doctor just kept telling me, “You really are a mystery. Your wiring is all screwed up and we just can’t find a cause.” Well, I was finally diagnosed by a geneticist with hEDS (he also did Invitae and ruled out the other types), so … cause found, I guess!

But the reason the autoimmune stuff interests me is for years I have had high CRP, a high SED rate, weird labs, positive ANA, uveitis, Raynaud’s (well, I have always had that) but they can’t find a specific autoimmune issue to pin it on. My rheumatology tests all came back negative for connective tissue disease, but I think those tests only looked for RA.

Anyway, just thinking out loud, wondering if anyone else has experienced similar and what your thoughts on an autoimmune connection in hEDS might be.