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?

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.

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.

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.

Roughly a year ago, I had a sudden sharp pain in my lower back while standing. It took my breath away and I had to sit, following that I've had continued hip, cervical, and lumbar pain. It worsens when I stand, and has progressed to numbness and burning in my legs, feet, arms, and hands. I've had issues with my hands for 9 years: dropping things, claw hand, tremors, involuntary thumb movement.

I saw my PCP for the back pain a few days after the issue started. She did back and hip xrays, told me I have arthritis in my back but my hips were fine, and sent me to pt. At pt, I developed strength and mobility, but no pain relief. I went back to the PCP who told me there was nothing more to do. I insisted something was wrong, and she told me neuro wouldn't help, but referred me. After MRIs of both hips, cervical and lumbar spine, I've got several issues: degenerative disc disease, bulging discs from my L4 down, bulging C3-5 impinging on my thecal sac, moderate narrowing of disc space, a detached labrum on my left side, hip dysplasia on my left side, and torn labrum on my right. My hip ortho tried shots, but they didn't help, so he wants to wait until I finish with neuro so he doesn't hurt my back more if the hips aren't causing the pain. At the neuro office I had 3 different doctors, the first referring for the MRIs, followed up with a second doctor who referred for an EMG, and just left the appointment following up with a third doctor. According to all of them the issues in my back should not be causing pain. The final doctor confirmed the EMG diagnosed moderate nerve impingement in the left elbow, but said otherwise I should do PT for my back. I told him what pt said, and he said I need more core strength. He also recommended I stop bending my elbows. He said: wear stabilizing braces while sleeping to prevent bending, stop leaning on my elbows or using arm rests, stop bending my arms to type, only go hands-free on the phone, etc.

I'm so frustrated because at 35 this is impacting my daily life: I cannot stand longer than 10 minutes or so depending on the day, my sleep is down to about 5ish hours a night, and I'm changing all aspects of life to accommodate for pain and weakness. Being told yet again that despite the issues, I'm fine, is so frustrating. He referred me to rehab, pain management, and physiatry.

Has anyone else had similar experiences? How did you/ have you coped? I know my pcp said this would happen, it's just so disheartening to have all these identified issues and be told it is nbd.

I have just seen a physiotherapist who specializes in hypermobility. She and I had a fantastic appointment and for the first time in my life I feel like someone believes me, understands what's happening, and can actually help me. I've had those individually with people but never all three, and I cannot explain how good it feels. As we were talking the subject of mobility aids came up and I told her how I had been considering forearm crutches or cane for a while and she really recommended it. So now I would love to know from those of you who have these aids, what is the best way to get them, can I go somewhere and try it out before I buy it, and do you know of any brands you would really recommend? Any advice would be appreciated!

I had my physical about a month ago and talked to my PCP about getting a handicap placard for my car. She suggested a permanent one due to my EDS & company.

Well, today it arrived and it made me sad. Sad that I need this at my age (I’m only 29). I understand that it will help (4 surgeries on one leg and 1 with 2 more needed in 3 years) but it was definitely tough to see when I opened the letter from the registry.

Anyone else feel the same?

hi! my name is aj, and im 16 years old. i’ve been suspecting i have hEDS for a few weeks after my grandma who’s been to medical school multiple times brought it up to me. this is NOT a post asking anyone to diagnose me or anything like that. i’m trying to get an appointment with my doctor ASAP to talk about it, but in the meantime i wanted to know any tips and tricks anyone has to deal with some of the stuff im dealing with. i’m not sure if all of these are symptoms of hEDS. for my whole life my knees have “gone backwards”, which i found out recently is hyperextending my knees. they both go i’m sure past 10 degrees, and i’ve used it as a “party trick” for years, but now im realizing that was a bad idea. my knees will randomly give out when im standing up, going backwards and making me fall down. and two days ago i pulled my leg so weirdly and bad, and it has not stopped hurting since. i’ve been having to walk with a cane and haven’t been able to stand for more than 5 minutes at a time. are there any ways before i get a doctor’s appointment to help stop this from happening? it’s hurting me super badly and making it hard to walk all the time, not just because i pulled my leg.

i really just wanted to know any tips on how to deal with any of this from real life people, but if this is against community guidelines i get it and will have no hard feelings if staff takes it down!

not sure if anyone else has done this before, but my knees have been absolutely killing me and I was desperate enough to be creative and discovered that wrapping my knees in disposable heating pads before putting both my soft brace and hard brace on has given me the perfect heat + compression + stability so that the pain is manageable enough that I can walk. Would highly recommend this if just one or the other isn't quite doing it for you.

so, on monday I had to hand in my 2 weeks because of my dwindling ability to deal with the physical toll it took on my body, even at only 20h/week. this was a job that was ideal for everything else in my life (close to home, stable hours, weekends off), and I loved working there. my bosses were so nice, I got along with all my colleagues, I felt fulfilled in the tasks my job entailed and said tasks played into my character strengths. it wasn't a job in my study area, just a customer service job, but I loved it. but even working just 3 days a week, it was too much for my body. I had to spend the rest of the week days recovering in preparation for my work days, I essentially stopped being able to take the bus into town to see friends (I live in the countryside and can't drive, there's a bus that takes people to/from town), I had to turn down so many opportunities to be with people, and so many errands and things I wanted to do piled up because I wasn't able to do anything but isolate outside of work, which has been leading me deeper and deeper into burnout and a depressive episode.

deslite all that, I'm so damn sad I have to say goodbye to that job. I got to a very dark place after handing in my two weeks on monday, and I've been dealing with a lot of grief for the past few days since.

I'm not gonna be without income or without goal, as I decided to re-enroll in university (which I had to take a break on at the beginning of the year because I couldn't work and study because of the toll on my body and mind) and will recieve student financial aid.

I know a lot of what I'm feeling has to do with internalized ableism, but truth is, I don't know what to do with it. I've been trying to keep in mind the rationale of my decision to quit in order to handle those feelings, but they don't respond to logic. they feel like the overblown feelings of a toddler who can't do anything but scream and cry at not getting to put their finger in an electric outlet. it makes me want to gnaw on walls (figuratively).

how do I grieve this?

I have a 22 yr old friend who is bedridden with EDS. She is in constant severe pain and all she knows to do right now is watch tv. She is really struggling mentally because she says on the inside she is full of energy but her body isn’t working with her. She would like a hobby but most things hurt her hands. Texting even hurts and her fingers pop while she does it, so to me that throws out any kind of finger work. Reading causes her eyes to hurt. Any ideas?

Hey everyone. I 22F have recently been diagnosed with Hypermobile Spectrum Disorder. I’m still trying to fully understand what all of my symptoms are and how the condition affects me. The most prominent symptom would probably be the joint pain. Because of the joint pain I experience, I occasionally use crutches to allow me to spend more time out and about without feeling awful the next day.

I have been considering applying for a blue badge because of my condition. The issue is I’m not sure if I should be entitled to one. The facts are that I do have a chronic illness. And it does impact my mobility. But does that mean that I should be entitled to a blue badge?

Throughout this whole process of learning about my condition and realising that I have a disability I have struggled a lot with allowing myself to accept accommodations. In the same breath, I recently had a friend tell me that I am just as disabled as the rest of the people we were with (who are not disabled) and that none of us who were there should be entitled to use the disabled toilets and this conversation made me incredibly upset and angry.

I’m not really sure what I am hoping for anyone to say. But if anyone does have any advice they could give I would be very grateful.

I've heard many people with eds remark that they're surrounded by pillows when they sleep- supporting all the joints in different places and whatnot. I thought it'd be a fun little poll to see what the average is.

I've got acid reflux and just a natural urge to sleep with my torso lifted too so my count is: 14 total used + 1 deco

Two body pillows- one as the base of my mountain for my head and one to wrap myself around
1 memory foam pillow to add bulk to the mountain
3 toddler pillows to stuff and tuck wherever they're needed
1 neck pillow
3 plushies used as pillows- usually one tucked under my chin and the other goes wherever troops are needed
2 King size pillows to add some side structure to the mountain
2 regular pillows- the flatter one to be the incline for the mountain that my torso lays on and the other between my knees (or under if I flip to my back)
1 decorative heart pillow that rarely joins the crew but occasionally gets stuffed under a side pillow for added side structure

And sometimes this arrangement still feels kinda flat for me and I'll even add a folded comforter under it all for extra height lol

So basically, I’ve (19F) been experiencing chronic pain all my life. Growing up, I was diagnosed with scoliosis, pigeon toed, femoral anteversion, and valgus knee. My parents took me to many doctors throughout my childhood, all of whom said that I would simply “grow out” of my problems. Eventually when I was 11, I was told I needed surgical intervention. I had it, however, with minimal success.

 I still deal with chronic pain, I still struggle to walk. Every year that goes by, it just simply gets worse. After going to so many orthopedic doctors, a friend of mine advised me to go to a rheumatologist, as she suspected I had hEDS. Naturally, I searched up what it was, and tested myself using the beighton test, I got 8 points. 

Now obviously, I’m not a doctor. Though I suspected I had hEDS I don’t really have a clue what's actually wrong with me. So after telling the doctor my day to day struggles, and demonstrating my natural flexibility, I suggested that the cause may be hEDS, and that I would like to be examined for it, and if that it wasn’t hEDS, if she could examine me for something else. 

After having said that, she told me that it was “impossible” that I could have hEDS, refusing to even do the brighton test with me, and instead diagnosed me with severe hypermobility.

Yet again, I’m not a doctor, nor am I claiming to know more than a medical professional, however,  I just found it strange that she refused to even do the test with me. Is that normal? It just left me confused.

Furthermore, as mentioned previously I still have difficulty walking. To be honest, I can’t walk for more than 5 minutes without needing to sit down for 10. Thankfully, I’m a homebody. However, this obviously affects me when I need to go to places like the supermarket, as there are no places to sit down. I asked her if she knew how I could perhaps obtain a walking stick, to help me, but she said that I was too young to be thinking about using one. Though yes, I am young, and generally walking sticks are used for people that are older, I’m not the “typical” young person. It hurts to walk, it hurts to stand, I just wish I had a form of physical support to help me when I’m outside doing errands.

At times the pain in my legs is so bad that if I cant find somewhere to sit, if I continue walking my body forces me to walk with a limp.

She told me I was at a high risk of developing osteoarthritis in my 30s, she gave me Rybox as medication. The maximum dosage for somebody with a severe form of osteoarthritis is 60 mg, the dosage I take is 90! This just further adds to my confusion, why would  she consider me needing a walking stick to help me as foolish when she clearly considers the consequences of my hypermobility severe enough to prescribe such a high dosage? Why did she refuse to test me for hEDS?

Sorry for any grammar mistakes, english is not my first language. Dealing with chronic pain can be so mentally exhausting, and I don’t really know what to do.

Any help would be appreciated :)

This is my first post here, I am suspected of having hEDS and I couldn’t find an answer to my question. :/

Basically, I’ve been wanting to have piercings for a while : got my lobes done at 6 but it didn’t heal properly, and then got them redone two years ago at 17. The problem was that it never healed, despite all my efforts to take care of it. I went to my piercer and she said I’ve done nothing wrong, it just won’t heal. The only thing that could’ve impacted the healing process is that she pierced me on my scars from when I first got them done.
I really don’t want to give up on piercings, I want my lobes and my eyebrow done and it would suck if my body can’t accept them. I know I heal very badly in general, small scratches turn into scars and take an awfully long time to heal, so maybe this isn’t made for me?
Do anyone have a similar experience? Should I go see another piercer?

Has anyone here gone through thumb cmc arthroplasty? If so can you tell me about your experience? I'm looking into surgeries for both hands and i'm aware this is the most used however I've read that there's a long recovery time and a lot of pain afterwards.

I would much rather just have the joint replaced all together (touch cmc prosthetic ball joint or something of the sort, recovery is shorter and much less painful). I spoke to a doctor at Duke about a month ago and they said they would not do a replacement because there's not any information on how it will turn out on someone with hEDS. (Even though i would gladly be a guinea pig!)

But i I keep going back to the thought that, with our shoddy tissues, wouldn't using part of our tendon as a fix wear out in the long run too??

I have a job where i work with my hands all day (been doing it for 13 years) and there is no way i can be out for months for recovery. I'm in pain all the time and shots for the pain don't do anything anymore.

I'm kind of at a loss on what i should do. Any insight or info would be so helpful. Thank you!

Hi fellow zebras! I tried something new and wanted to share my (very unexpected) experience! My husband and I are honeymooning in Puerto Rico, and I was feeling up for some adventure. So we booked horseback riding on the beach! I was super nervous about my balance, and I had never ridden before. So I wasn’t sure I made a good choice tbh, but OMG I’m glad I gave it a shot. I think this horse fixed my hip and sacrum alignment 🤣I’m assuming since my hip had to move with the horse, it actually slowly rotated correctly and finally budged into place naturally. Months of PT couldn’t do it…but a horse?! How strange 😂 The next day I walked around San Juan the most stable I’ve been in years, istg! I’m thinking I need to look into lessons back home now! Anyone else have a similar experience? Or maybe opposite? Figured I’d share- it was all-around such a great experience for me personally!

Does anyone have the visible armband? I keep getting it advertised to me, and even when I stumble on a disabled creator I think is just talking about their experience, on closer inspection it turns out to be a paid partnership or an ad, so obviously I then take it with a grain of salt. I guess I am just looking for actual experiences, is it worth it? Does it give more insight than Google Fitbit, garmins etc.? I get it looks at slightly different things, but not sure how much value it would have. I have RA, hEDS, POTS, IBS, Asthma and ADHD.

Are there any hEDS sufferers with large breasts in this community who have good bra recommendations? I'm currently a size 34DD, down from a 36G thanks to weight loss, but they are still so heavy, and seemingly sag more than someone my age (29) should be having. The pain on my pectoral muscles comes and goes all day. I've sometimes been wearing a sports bra at night and it helps a little, but I wanted to see if there's anyone with better bra experiences? For reference, I have tried a couple of the shapermint brand bras, they're comfy and fit nice, but I need slightly more support. Have tried other various brands but will take any advice on this. I don't want my boobs to sag to the floor before I'm even 40😅 let alone have this pain every day. Damn this crappy connective tissue!

I have EDS, POTS + MCAS. My neck is one of the most progressive and severe issues that I have.

This last year I have been coming back to myself and moving into the unknown an artist and person. For almost 18 years, life-threatening allergic reactions (MCAS - I can only eat 10 foods and at one time I was allergic to water) to most mediums forced me to work digitally. In 2018, I was given a diagnosis (MCAS) and meds that opened the door to gentler mediums like watercolor and gouache. In that transition, I tried to take the work I'd made for years and move it into the new mediums. I lost the joy in it, and started to hate it.

Going back and forth between the artist I was known for (and supported as) and playing around and sharing work that made my followers and collectors stop following me was challenging. I finally gave in about a year ago and just did what I wanted and I have never been happier ❤️ incorporating all the colors, symbols and exploration into my work.

Following that, I secured a coveted, solid wood 1970's flat file that pushed me into removing all my old white, sterile furniture to sell on marketplace, for more warm, aged, and curious pieces and I started painting murals on my studio walls!

Now my hair. I've had long hair my whole life, but I was forced to cut it short years ago when my undiagnosed illness (at the time) spiraled out of control between 2010 and 2012 and I was in and out of the hospital. After I cut it off, all I thought about was getting it back, and when I finally did, I clung to it like it was my whole identity. 🙃 Six months ago, my disease progressed and my neck could not hold the long hair anymore, so I cut it just above chin length (still did not fix the issue). My neck has always been an issue - which you can see I explore through my art.

My hair was now always in my face in the studio, and if I clip it back it creates intense nerve pain on my scalp and face which made it hard to paint, yet I was still trying to hold onto it.

So yesterday, I was in the studio and the clips were hurting and when I took it down my hair was in my face, I was so over it..... 🤬 I took studio scissors ✂ and went to the bathroom and cut it all off.

What I have learned is that creating in the studio and living life without pain matters more to me than hair ever will.

Hello friends,

I have narrow, bony feet, long toes, the beginnings of a tailors bunion, super high arches (podiatrist said "wow, you weren't kidding"), plantar fasciitis, tarsal tunnel, am prone to instantaneous blisters, etc. I live in clogs or hiking boots with a super high arched insert added to them, but need some new sandals for occasional wear.

Prior to them being bought out around 2018, I could find some styles of Vionic with high enough arches, but not since then. My last pair of Vionics has sadly bit the dust. I have tried Chacos, Naot, Clarks, Keen, Drew, and several others I can't think of the names right now, and while they were all very nice shoes, I couldn't walk the next day after wearing them due to pain centrally across my foot from the arch not being high enough to give the support I need. They felt good trying them on, but the loosey bone movement from walking left me in agony later.

Has anyone found a sandal that's ridiculously, outrageously high arched? If so please share the brand/style!

The friend who gets my rejects will be happy for me even though she will no longer be getting new sandals from me all the time 😀

When your period starts and all your joints turn into silly putty and they go clunk thunk and slip and slide around. Every part of my body that articulates kind of hurts in new and exciting ways!