Like the title says, what do you wear under these? Now, that we’re getting into warmer weather, I would like something light weight to wear under these. This will be my first summer with these braces. I’ve been wearing fleece lined leggings from Athleta under them all winter. Any suggestions?

About a week ago, I was feeling young(I’m 25) & decided to drop it like it’s hot. I quickly found out that it is ice cold though lmao.

Went to the ER yesterday to have my knee looked at & they gave me an immobilizing brace & referred me to a surgeon because I have grade 3 ligament tears in my knee, they’re also wanting the dr to see if I tore my meniscus & ACL.

I tore all these things in my right knee when I was 13, so my left has always been my good leg.

I officially do not have knees like Megan, sadly.

Struggling to even start this post. I learned masking from a very very young age, not all EDS related, so this is out of my wheelhouse a bit.

There’s a bit of a backstory l, I hope I can be concise. I’m 37, have hEDS with some vascular crossovers. Actually a published study on me being a rarity of a rarity. I digress.

My mama passed away July 27, 2023. It was was unexpected. She and my daddy had been married almost 50 years before she died, and they had a very “traditional” housewife/breadwinner dynamic. Mama coddled him hard- all he had to do was go to work and she handled basically everything else. Daddy can’t navigate the world alone, the days I have to stay in bed show me that he eats Oreos and considers cereal a proper meal. Believe I got that habit from him, I eat in a similar fashion but I’m not a 5’5” 70 year old man that is 115lbs soaking wet. I try to keep calorie dense foods handy, shakes, blah blah and he is fairly good at least having a shake or two. Just can’t get any weight on him.

I’ve lost a fair amount of weight myself in a quick amount of time, but at 5’5’’ and currently dancing around the 170lbs mark, I’m okay with it beyond the rapidness of it all.

I moved back home to make sure daddy doesn’t essentially become some feral animal and plus I wasn’t able to maintain my rent. So I went from living alone in a fairly small 1 bedroom apartment with a cat to a house where the kitchen is probably the size of my entire apartment, 2 dogs, one of which is special needs, and an additional cat that I have to keep quarantined to my room because she is a hateful old bitch of a cat that can’t/wont bond with my sweet boy who I rarely get to see now as a result. Plus I have taken over probably 2/3 of mama’s role of taking care of the house and daddy. I work remotely full time as well.

I can’t keep up. I can’t recall last time I mopped or cleaned my bedroom because I can’t make it that far into the house. I wake up, cry for a bit, and get up around 6:30am once my current reappearance of IBS forces me back up. I’m not sleeping because I am still not unpacked because the house was a shit build and I barely have a functional closet. I bought two closets, but they’ve been sitting in a box because if I don’t have time or energy to deal. This isn’t home for me anymore, I don’t want to be here. I get ready for work, try to do one task like a load of laundry or supper prep during my lunch break. Work typically ends around 5 and I start trying to finish x domestic task, cook supper, get daddy prepped for the following day, take care of the animals, and by then it’s around 8pm and I am spent. Not spent enough to exceed 4-5 hours of seemingly useless sleep.

My work is suffering, I keep expecting every day to be fired. I’m in a rural area where nothing is close by anymore. I’ll cave and Instacart groceries maybe once a month. I have an automated vacuum/mop tool but I haven’t gotten around to figuring out how to use the mop function.

I don’t know where I’m going with this. I don’t have anyone to really talk to/talk thru some ways to help me. I’m fighting a loosing battle and I’m in too deep to see any solutions. I’m not suicidal so please don’t mistake my saying I can’t continue living like this as such.

Conciseness isn’t my forte it seems. Thank you in advance if you’ve made it thru small novel.

I’m new here, so I’m sorry if this has been addressed before.

I’ve always had very unstable ankles, which I’m sure most people here can relate to. But despite rolling my ankles and falling frequently (down the stairs twice in one day, at least a dozen times while on a hike, etc.) I have never once sprained my ankle. Whenever I research hyper mobility, I see that frequent sprains are common, but is it possible to have ankle ligaments that are so stretched they don’t sprain? Just curious.

Thanks!

Basically have been trying to get a follow up appointment with my GP for 3 weeks now, turns out she only works two days a week at the moment. She has been excellent and listened to my concerns, diagnosed me with hEDS, set up several referalls. However, I have been trying to schedule a follow up with her for three weeks now after some xrays were taken of my hip. The practice has offered to have me follow up with another doctor, but I am hesitant since it took so long to find someone that actually listens! What would you do? Stick with a doctor that is difficult to actually see, but very very good OR take a risk and go with a new doctor that you could see right away but may just brush you off?

This is just under the notes section in my last appointment and eds is not under my conditions?

I'm having a hard time tonight and feeling down. I currently run my own business which I can run at my own pace and my clients are very understanding. I know I am totally blessed to have that much, but I really wish I could do more. I work part time but desperately wish I could work full time like I used to be able to. It would really help us financially and I could just get more done and be less stressed about how slow I am. I just can't seem to do it. I'm so fatigued and I feel like my body just stops working at a certain hour. I've also been having flares of various illnesses that I've needed to take some off for, so I know that's not helping. I just really want to be that "boss babe" with her cool, successful business but it's hard.

I had a super simple procedure on april 10 (2 weeks ago) and had to be put under general anesthesia. I get IV meds every 12 weeks so I am very familiar with how I respond to IVs—I have my nurse run my fluids at a much slower rate, I know what veins work for me, etc.

I had a lengthy talk with the anesthesiologist, he and my doctor know I have hEDS and that my veins are sensitive and that I would like to use the antecubital vein for my IV. the anesthesiologist said the antecubital would be fine for the IV and to tell the nursing team that's what I wanted. when they came in, they refused to do it there and instead picked a spot on my arm with no visible veins. that vein got infiltrated, it was very painful, and I had to alert another nurse. she told the OR team it was infiltrated. they took it out in the OR, while I was still fully lucid, to put another IV in my hand, another location I asked them NOT to put an IV because my hands are very small and my veins are very thin there. the meds they ran before I went under and don't remember anything burned, which they said was normal.

2 days later, I had swelling in my wrist and pain that has not gone away—for 2 weeks—and the hospital staff just told me to take ibuprofen and do warm compresses, and go to urgent care if I wanted. urgent care recommended an ultrasound to check for blood clots, but because it might not be covered by insurance, I held off on doing it until this week, because I started to have tingling in my wrist, hand, and arm. I went back to urgent care and i'm having my ultrasound tomorrow. the doctor at urgent care said it's most likely an infiltrated vein that's healing and they probably caused a slight nerve damage/injury, which is why there's tingling. he recommended massaging the area to increase blood flow and putting it in warm water. AND for the future, to tell them to use a bigger vein. WHICH I DID, to try to prevent this from happening.

I already filed a complaint against the hospital, but I'm so livid. things like this have happened to me before because they don't listen to me, tell me the rare thing won't happen even though it almost always does (because that's hEDS for you), and my medical PTSD literally cannot take it anymore. does this even count as medical malpractice? I don't want any of these people to touch me again but I also want there to be some recourse. I'm tired of shitty treatment.

What are the top things that help with the pain from cranio-cervical instability?

I got diagnosed in January and my sister got diagnosed a few weeks after me. She’s 23 and I turn 18 on Sunday. She needs spinal fusion surgery for cervical instability. I’ve been getting strange headaches the past few months and she said they sound like cervical instability headaches. I can’t go through that too. I’m so afraid

I’m seeing an internal med specialist at an ed’s clinic tomorrow. I got the referral from my GP two years ago and a space finally opened up. I’m in the middle of my exam season so mentally this isn’t coming at a great time, does anyone have any words of wisdom? Anything I should be preparing/keeping in mind?

Off the bat - This is not for people who only have suspicions or self-diagnoses. And I would NEVER suggest lying to any care providers! Do not do that. Thanks.

But if you find that your doctors are agreeing that hEDS is very likely but aren't documenting it for whatever reason? I've found that just confidently telling specialists you "almost certainly have" EDS during intake is enough to be taken seriously.

I wasn't trying to socially engineer my way into proper care -- I only did this because I THOUGHT IT WAS IN MY CHART (uno reverse of this post ) because a specialist with a lot of EDS patients had a whole 20 minute conversation about it with me that went beyond the Beighton scale. She just... did not write it down.

And yet my declaration was still enough for a new-to-me super-specialist to shuffle in some med students to gawk at my bendy bruised body and quiz them on how the syndrome affects the systems they were studying. I saw three new providers in various subspecialties (who all took me seriously) before my PCP asked me who was managing this connective tissue thing I kept talking about because she could not find it in my chart.

CAVEAT: I have access to respected doctors affiliated with prestigious hospitals / universities, so I doubt folks in less urban areas would find success with this ... but I've had access to prestigious doctors in prestigious hospitals and universities my entire adult life. The amount of time I save skipping right past the "hypermobility is usually benign" part of the conversation has been significant.

My biggest challenge with wearing compression garments-leggings and socks mostly-is that they make me so HOT. Does anyone have recommendations on garments with good medical grade compression that don’t do this?

I’ve known I had some sort of hypermobility issues for about 10 years and went to ortho recently for my hip. Was diagnosed with ehlers danlos syndrome (possible vascular) waiting on test results and snapping hip syndrome. Should I be concerned that they were able to diagnose it that quickly? Is that normal? As someone who has blocked out pain and symptoms for years (including passing out, sharp intestinal pain, lightheaded when standing up, etc). I haven’t been tested for anything besides EDS yet but what is the probability it’s not just EDS?

Years. I've spent years trying to get someone, anyone to go through the hEDS checklist with me and give me a firm yes or no rather than waffling about with "ohh,,, ehhh,,, yeah, we think it might be hEDS".... someone, at some point prior to 2019, officially diagnosed me with EDS, put it in my medical records, and never told me. Like. Are you kidding me right now? I only found out because I took a glance through some old medical records, and there it is, clear as day.

Ughhhhh!!! It's fine, it's cool, it's fine.

I’m not sure if this is the right place but I’m having quite a bit of trouble with chronic pain and fatigue getting in the way of me revising as well as I could for my upcoming exams.

I have less than a month left and I’m completely and utterly exhausted. I find it hard to muster the energy to study, even struggle to sit up to do it. The stress of it all has been sending me into constant flair ups too which is just a nightmare.

I’m really passionate about my subjects and I want to do well so badly. I’ve lost out on years of my education already.

Has anyone else had a similar experience and managed to do ok?

Hi y'all! I'm a hearing signer (my mom is recently hoh so not really a CODA) and I've been wondering how much EDS will/ can effect my signing. I was recently diagnosed (but I've been diagnosed with POTS for 8 years) so I'm not sure where it will go from here. I've been wondering if anyone here has experience with sign language and has any experiences with it being a challenge with EDS? I've started getting a bit of trigger finger occasionally. Has anyone had much struggle with resetting your fingers while signing? I'm really scared to loose my first language. Any advice dealing with EDS while signing if you struggle? Help!

I’m about to start and was just curious if you guys had any experience with it.

I got a job at my library and I'm so freaking excited!! I had so much fun today!!

I don't have any skills or experience for a work from home job or office job. I've applied for quite a few over the years and have never been surprised that I didn't get them. Every job I've ever had is physical labor and usually pretty demanding on the body. This is perfect for me where I get to sit and move around when I need to!!

I'm so happy!! I worked today and I'm not in a ton of pain. I've never had that happen after a shift!

Does anyone else have laryngomalacia? (aka floppy larynx) I have hEDS and laryngomalacia as do all my siblings and mum though those with it typically grow out of it by around 2 none of us have and when I’ve gotten surgery to correct it multiple times it goes back to normal within almost a month I get a stridor whenever I exercise from it and sometimes a stridor that is constant when just sitting there doing nothing that last for days just wondering if anyone else on here has it and has had a similar experience?

Some background on my situation: I (28F) was diagnosed with the following throughout the last 5 years: hEDS, MCAS, Orthostatic Hypotension, and Arthritis. I feel like I am in an impossible position. My husband, who is never the problem, supports me in whatever I want to do. I am and always have been a very independent person and will try to do pretty much anything by myself. In the past years, I have gotten good at asking for help when I need it and resting when I need to. Now the problem. My in-laws treat me like glass, I could break and fall apart at any moment. And it is nice I appreciate that they are taking my diagnosis seriously but I feel like I am going to go crazy if I am not allowed to be independent in the ways I know I can handle. Basically, I do something---they find out and then I get a lecture. I dislocate things just by sitting in the same spot for too long so things like bringing in the groceries or lifting things don't scare me. I know I could get hurt but I get hurt doing less so I am willing to take that chance. Me and hubs moved in with MIL to help take care of her as she becomes older and she needs more help. So it has gotten impossible for me to do things without hearing about it from her. Now on the opposite side is my family. They don't really believe that I get hurt like I do or that it is serious or bad. So from them I get ridiculed for not doing things that I know I cannot handle. The biggest being sitting in a car for 2+ hours to go visit them. I just want to live my life without hear other people opinions constantly but hey thats life. If it wasn't for my husband taking care of me, helping me, taking the blame for me, and sticking up for me I think I would actually go insane.

I’m going to see my doctor on Friday to discuss if I might have EDS, and my parents still don’t know (I’m not 18 yet and still live at home). My mom has always treated the symptoms I believe are EDS as something mental that I have “manifested” into becoming something physical, and I hope a diagnosis might change her mind but what if it doesn’t? What do you guys think I should do? My current plan is to make a power point that I can bring up just in case… All thoughts and suggestions are greatly appreciated. (I’m also aware that it might not be EDS and my mom might be right, but I feel it in my gut that something’s wrong with me)

I did too much several days ago and have now been in 8/10 full body pain. Literally, from the bottom of my feet to my skin, to my eyeballs.

I considered trying to make an appointment, but I think it's pretty likely they'll tell me there's nothing to do but what I've already tried and send me home.

Tried: heat, ice, Tylenol+ibuprofen, gabapentin, muscle relaxer, compression I'm allergic to ingredients in most creams

Sunday night i dislocated my elbow which i need surgery on. i’ve been told by my orthopedist not to relocate it myself and since it was 2 am, i unfortunately had to go to the ER

A lot of doctors in my area don’t know about EDS or how to treat it so they often ask what other doctors have done to help before.

when the doctor came in an hour after being there, which i understand is usually a short wait but in this case it is a rural ER with only 11 beds and they had no other patients at the time, he attempted to pronounce ehlers danlos syndrome and got it horribly wrong which to me, is usually a sign they don’t really know about it.

he then asked how other doctors treated this same injury and i told him. he then told me he’s not going to do that and the only thing he’s willing to do is splint my injury in the place it was.

i told him multiple doctors, including my orthopedist have told me not to do that because it will just cause more issues.

I refused to have it splinted and he immediately said “well i’m not giving you drugs so that’s your only option”

i was upset that he thought i was drug seeking and i raised my voice and i told him i didn’t want or need drugs and i would just like to be discharged if splinting it dislocated is all he could do.

he angrily took his gloves off and he and the two nurses in there just walked away without saying anything.

i walked out into the hallway close to the nurses station where i admit i raised my voice and asked “so can i be discharged?”

a nurse walked up to me, close enough that i could feel her breath and said you “you need to just leave right now, i’m getting security and calling the cops”

i told her that was fine but my fiance and i were genuinely surprised because all i had done that was even a little out of line was raise my voice when i was obviously being ignored. the security guy came and stood by me and she said if i wasn’t going to leave i had to go back to my room to wait for my discharge paperwork and said it was illegal for me to be in the hallways.

i was still upset and told her that it was in no way “illegal” for a patient to be in the hallway to talk to staff about non hipaa protected info and she just stuttered and i just walked back to my room.

another nurse was standing near us and rolled her eyes and scoffed and i said “don’t roll your fucking eyes at me” and she walked away.

i stood in the doorway of my room waiting for my paperwork like I was told and the cops showed up. one came and talked to me to get my side of the story.

he was actually really nice and calm and after a while he asked if i’d be okay to go to my car to wait for my paperwork and i was fine with that.

we went outside to wait and he told me that this hospital does this anytime anyone gets slightly upset. he told me im going to be trespassed and i just said i was fine with that.

the other cop came out with my paperwork and said “i wouldnt even bring my dog here” as he handed it to me.

before i got sick, i used to work in healthcare and had my fair share of angry patients but unless threats were made or it became physical, we never called the cops or had people trespassed.

this was the first time i’ve actually gotten upset with staff treating me like my condition isn’t real or just neglecting to give any care. i understand that healthcare workers are overworked and underpaid but that doesn’t mean they get to treat someone poorly.

i actually have the whole interaction voice recorded and it sounds dystopian. i never even yelled and it’s like the doctor immediately decided i was drug seeking even though i told them im already on pain management.

people i know in real life who don’t even have EDS have been telling me they’ve been labeled as seeking too lately like my aunt who had just had surgery for cancer.

trespassed or not i’m still just genuinely upset on how they treat people.

this happens so much, myself and multiple other people have all separately reached out to news networks and i’m going to be doing a piece with NPR on the treatment i have received.

i’m just so tired and i live in a smaller town with only two hospitals and the other hospital is even worse.

i avoid going to ERs at all costs but it’s like, what am i supposed to do now when i do have to go.

On Friday I fell down my porch steps due to an ice storm and I just thought I bruised my back.

Friday night the pain was worse and since I passed out after getting ready to go to the ER, I called 911. EMTs and about 7 firemen were squeezed into my trailer home and I couldn’t sit up without my bp tanking and my heart rate fell to 30bpm.

Passed out in triage Friday night and then Saturday was by far the worst day of my life as I couldn’t move without pouring sweat, throwing up a ton, having nausea worse that anything is ever experienced then my eyes would roll back into my head and I’d pass out (5-6 times Saturday).

They were focused on my PCA stroke plus my mechanical aortic valve but the issue was the bruise. My brain was trying (and starting to fail) to keep my body alive with 1/3 of the blood in the bruise. Once they focused on that, got me off my warfarin and pumped me full of saline since I was so dehydrated, I started feeling better.

It wasn’t until the ICU doc talked to me on Sunday did I realize how close I had come to not making it as my organs were shutting down and I may have had a few hours left at most.

Granted my hip, back and left but cheek is bruised beyond belief, there is no more internal bleeding and they are slowly bringing my INR back up.

Hoping to finally go home tomorrow

Wanting to try a pair of vivobarefoot shoes for walking to strengthen foot muscles. Any EDS related opinions?

I have a lot of trouble with walking, and get immediately winded. I have to walk around my campus a lot, and have been wondering if anyone has any mobility aid suggestions for me?

Im gonna describe my problems so y'all know what I'm working with here.

Basically, for context, I have to walk about 10 minutes to classes basically all uphill every morning. And this problem is around for every walk, no matter the distance of incline. I have to walk with a fully open mouth or I can't breathe, I am in a lot of chest pain, basically feeling like I'm breathing against a brick wall, and I struggle to walk because I just feel like I can't get enough leverage on myself. Sometimes my legs feel like they aren't properly attatched, making it hard to move.

I almost feel like I am missing legs to get momentum. Like if I had four legs. Sometimes I push on my legs as if it would make them move better or to stabalize myself. I try to push on things around me to like... propel myself? I dont see anyone else panting like I am, and in what should be an easy walk, I am sweating, panting, exhausted and in a lot of pain. I also have slipping rib syndrome, so that makes it a pain.

Is there any mobility aids or other helps y'all think could make my life a little easier? If anyone has any similar experience, what helps y'all? Anyone else struggle like this (or am I alone here lol)?

Thanks in advance for anything!

Recently I had (finally) a very prominent heel spur removed, calf muscle released, plantar fascia released (all laparoscopically) and 6 lumbar epidurals on my 3 slipped discs. So much fun. They also took stem cells from my hip as a recovery treatment for my heel/foot(where the doctor takes autologous stem cells from the bone marrow in the pelvice. The “pluripotent” stem cells are then combined with platelets & white blood cells, re-injected into the tissue to accelerate healing.) All my surgical sites have healed on time and nicely. Except my heel, which is a mess! At 8 weeks post -op they sliced “the volcano” back open, cleaned it out and have put stitches back in for the next 4 weeks. In the middle of the 8 week my orthopedists & physio have agreed I have EDS but I have not been typed (as everyone knows getting a geneticist appointment is hard). So we understand why I’m not healing well. My question: Has anyone done this stem cell injection to “aid in recovery”? How did it go for you? I feel like they took some of Bad Me and stirred it up and put it back into a Weak Bad Me spot which =never gonna heal!

Does anyone get very varying scores from different medical professionals? I have been scored at 3 but also at 7/8. My hamstrings are short so that may be influencing my scores (it is at least a big part of the reason why i cant touch the floor) but i also think some of my most hypermobile joints are ones they dont ask about on the beighton scale. I am still waiting for diagnosis but will they look at other joints outside the beighton scale? Just a bit nervous i guess as i really am getting sicker and am afraid that this may be the reason i dont get the diagnosis. Does anyone know why these specific joints were even chosen to be a part of the test?

hey everyone.

i am seeking out (non-medical) advice and personal experiences and thoughts.

i am located in the US. i have an appointment with my PCP this coming Monday, and i really want to broach the subject of palliative care. but i also don’t want to be laughed at, or judged - or seen as overreacting. i am fortunate that i have a really good PCP and she is generally very kind and understanding, and i have seen her since i was a child. (now 23).

for some context: i am diagnosed with ehlers-danlos syndrome, which would be the primary diagnosis/reason for seeking out palliative care.

on top of that/in conjunction with that, i have/struggle with:

• POTS/autonomic dysfunction
• gastroparesis
• chronic migraines
• pelvic floor dysfunction
• polycystic ovarian syndrome
• chronic gastritis & GERD
• moderate to severe insomnia
• restless leg syndrome & sleep apnea
• generalized anxiety disorder
• autism & ADHD
• PTSD, OCD, and an eating disorder

~ there are others but they don’t generally impact my quality of life as much/if at all

some of the main symptoms i struggle with that heavily affect my quality of life due to these disorders, include:

• chronic pain (joints, back, neck, head, muscles, SI, pelvic, abdominal)
• nausea
• fatigue
• lack of appetite
• brain fog, cognitive function issues
• bladder pain & burning
• urinary retention & loss of control
• chronic, moderate to severe constipation
• excercise & heat intolerance
• inability to stand for long periods
• vitamin deficiencies
• dropping iron panel (no known cause)
• sacral pain/tailbone pain
• weakness, muscle twitches/tremors
• visual disturbances
• temperature dysregulation
• mild mast cell issues
• sensory issues
• worsened mental health/depression as a result

i think that’s most things, but i also feel very unwell right now, so i may be missing something.

basically, based off this info, does this seem too big of an ask? am i overreacting? does anyone have personal stories where they can relate?

thank you i’m advance.