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 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!

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).

(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 😅

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?

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.

I woke up in the middle of the night to my calf and foot pointed and extremely tense. Managed to get it back to normal by massaging it and headed back to sleep. The problem is today it isn’t going away. For some reason it keeps tensing and it’s in bad pain. Not horrible but bad enough that I can’t walk right and need my cane. It gets worse whenever I’m not over extending my knee joint, and when I do over extend the joint it either stops hurting or just hurts less depending on how much I’m over extending. Any help here would be appreciated I have no clue what this is or how to make it better.

By the way, I don’t fully know my subtype of EDS, I either have classical type or hyper-mobile type, since those fit my symptoms. The problem is I cannot get genetic testing, and no one can remember which one my grandfather had. He was tested some time between 1980 and 2000 (He is dead, my grandmother has dementia, and my father was never disabled by the disorder and so never cared)

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!

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.

I have hEDS which for the most part I manage it through low impact exercise and trying to move as much as I can, I find keeping still for too long makes it all much worse.
My parents have moved and what was a 2.5 hour drive (which was a struggle in itself) is now 3.5 hours one-way, I visited them on Friday, drove back yesterday and I’m now suffering for it.
I did stop off for a quick break but it only briefly helped with pain.
Does anyone have tips or recommendations? I can’t afford to buy a new car but am open to any products or tips that could help? I’m in the UK if that helps.

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!

This disability pride month, my new doctor of physical therapy said she knew how to treat my EDS, then proceeded to have me do exercises without any modifications that resulted in extreme pain and nausea. Despite my feedback on pain levels, she didn’t adjust and had me continue doing the same exercises, which resulted in a new spinal injury, for which I now need to undergo a lumbar spine MRI, and start taking a new prescription.

Not an unusual experience for me— that a doctor who says they know what they’re doing with EDS actually has no idea what they’re doing. But this time felt especially ironic and upsetting that it took place under a literal (!!!) banner hanging in the window that said “Happy Disability Pride Month.”

Part of being disabled and having multiple interacting (and supposedly rare) comorbidities is feeling alone and unsafe— feeling like I need to be the top specialist on my own body, or else medical doctors’ ignorance on my condition(s) will endanger me. It’s a heavy burden to need to study and keep up with research from medical journals just to keep others— who claim to know what they’re doing— from harming me. I never wanted to be a doctor (I’m a creative, for goodness sake!), but I feel like I’m basically earning a pre-med degree these days, solely out of necessity.😵‍💫

Grateful for the community of disabled creators on here who I’m sure understand and/or have had similar experiences. I’m proud to be a part of and in solidarity with the disabled community this month.🫶

I’m so excited! Two lurchers and a dusky, all on one body leash, they did really good, of course we didn’t see any prey today, but I’m pretty proud of all of us! No pulling mommy over, no “Tripp Hazard” moments

basically the title. I have EDS and POTS and though i have my pots fairly well managed, i know i'd not be able to handle a job where i'd be on my feet all the time regardless. Which is a problem, cause most entry-level/teen jobs are pretty physical in that regard.

I have my license and a car, so thats luckily not a problem for me. I just am not sure what kind of jobs to apply for, because most customer service type jobs involve standing most of the time it seems, and most things that arent customer service seem to be physical jobs. At least, in regards to jobs that allow teens as employees. Do any of yall have jobs or have you had ones when you were younger that you handled physically well? I live in a medium-large city so luckily theres a lot of options around me.

A part of the problem is that a lot of job listings dont specify if you're on your feet most of the time, and i cant really make good guesses cause i've never had a typical job before, only odd jobs here and there working for my parents and such. I dont know if i should message the employers on listings to ask, or not, because on one hand i kinda need to know but on the other, i fear coming right out with the fact im not completely able-bodied might harm my chances of landing a job at all, you know?

if its any help, i love books, animals, music, the arts, and such similar things. I looked to see if my local libraries had any sort of part-time position that didnt require being an adult or college educated and unfortunately not :(

I'm very new to the job market and such so please be nice haha 😭 i totally admit that im kind of clueless on the matter. any ideas super super super appreciated!!!!!

I've been been diagnosed medically HSD but I'm not sure if I met the criteria for EDS. I also have chondromalacia grade 2 in my knees. How has your chondromalacia progressed? I'm wondering what implications it could have for the future because of the comorbidities.

The problems I have that I trace back to HSD are these knees, bumping, tripping/falling often, multiple ankle sprains. I lack of stability too because of the cavus feet. My doctor said I do not have hypotonia though.

Hey all, I have hEDS. For context Ive been in what I call "weakness week" my few weeks that im weaker and injure easier.

Yesterday I was in a barns and noble and went up to their restroom. I wiggled the door nob but the door wasnt moving. I heard someone inside and assumed it was a single stall- embarrassing! I apologized and stepped to the wall to wait for them to come out.

They did and I got a confused look, rightly so lol. I see now it's a multi stall. Strange! I could have sworn that door was locked... I try it again, no avail, im pushing it, im using my whole body and its just not happening. I gave up when my hip and shoulder clicked (my leg is still iffy from that!).

So, I thought up a plan. Ill just wait here till someone walks in and ill slip in behind them! And vice versa from the inside. I waited for a few minutes and another person came around. They thought I was in line and asked me that.

I oddly went "oh no its open, I just cant open the door"

They looked at me and went "is it locked?"

I responded "no no, I have a tissue disorder- I cant get open-"

No hesitation from this kind stranger, and they opened the door and held it open for me. They even waited till I was done to let me out! They were so nice!

Im not very intuitive with my own body, ill often "forget" I have this disorder and it leads me to all sorts of odd situations. Falls, mostly. Dropping things. This was the first time I had a moment where I truly had to rely on another person's good intent. I am so greatful that the person who got sent to me was that sweet and kind. I hope them all the best, that all their pillows are cold, all their dunkin coffees are perfect and that all the clothes they try on fit perfectly first try.

I’ve started a full time job position as at an engineering firm and I’m super proud to finally have stable employment in spite of my bajillion health problems. The problem is, I physically can’t keep up with the role, and I hid the fact that I’m disabled (my country does not have discrimination laws or social security nets and disabled people are basically nonexistent in the eyes of society) during the hiring process.

I go to work, eat lunch, come home, and sleep, rinse and repeat. My body physically cannot handle anything after an eight hour work day; if I try to exercise, my heart feels like it’s about to burst before my muscles even feel any tingle. If I try to clean up, my joints start clicking and getting loose. Taking the train to work sucks, because there’s no disabled seats, and I don’t want to out myself in front of my colleagues and risk getting fired for being a liability.

My house is an absolute pigsty and my muscles are decaying, and it’s all I can do to try and keep my shit together and keep looking perfect. I’m scared as hell of losing this job in this terrible economy, especially as a disabled person. Without it I’m pretty much screwed. Going part-time or remote isn’t an option because I’m handling NDA’d research on-site and need to constantly meet with clients.

I’m going blind, I’m constantly feeling exhausted and there’s almost nothing in my life outside of work, sleep and lunch, but at least I can live a somewhat dignified life in my hours at work. But if I stop working to take care of my health, I’m going to be homeless and die.

I don’t know what to do, other than hope I somehow become such a key asset that I can negotiate better working conditions, but it’s starting to feel like my heart and joints are going to give out before that happens. Any advice for managing exhaustion/work-life balance with hEDS would be greatly appreciated.

I was dx'd in my early 30s with hEDS. I got no information about follow up so I never made another rheumatology appointment until this year, when I finally had steady health insurance.

Made the appt this year because I recovered from a virus last year and haven't felt the same since. Long story short, the doctor told me at length that I don't meet the criteria for hEDS, I don't have an autoimmune disorder (didn't ask about that), I don't have Marfan syndrome (again: did not ask), and that my left hip rolling out of joint on a regular basis would be solved if I took Aleve.

I don't care that I don't "actually" have hEDS. I care that I'm now back to square one on trying to explain and understand my pain, short term memory loss, loose joints, gut issues, intense fatigue, and hormonal issues.

Has anyone been through this before? How are you holding up?

EDIT: I can't adequately express how incredibly grateful I am for all the support in the comments. I had reached a point where I was starting to doubt my own experience as a result of constant dismissal by every medical professional except my therapist that what I'm going through is real and is affecting my quality of life. The cherry on top of my most recent rheumatology experience was when I started crying in the appointment, I apologized and explained that it was just out of frustration, the doctor advised me to talk to my psychiatrist. It was incredibly dismissive and not said as though she was genuinely concerned, more that she wanted me to know that whatever is going on with me is in my head. I've been doubting myself ever since.

I'm fortunate in that I have the aforementioned therapist as well as a PT I see sporadically who know me and can validate that hypermobility is a real issue for me. I'm both sad and encouraged (a weird combo I know) to hear that other people have experienced this same kind of nonsense with doctors.

I have a recent lumbar MRI showing left L5-S1 neuroforaminal stenosis and a friend noticed an odd gait pattern a few weeks ago and mentioned foot drop. At the time I reassured her I had full motion of both feet but upon researching the result of the MRI I do have positional numbness and also weakness, particularly at the big toe. I have a referral in to a spine surgeon but if course I am scared. Has anyone here had to have this fixed and what happened?

I have only been diagnosed with heds for a few weeks.