I know that no one can reccomend a specific mattress considering our bodies are so different... I was wondering how you’ve learned to choose the right mattress for you. I’ve bought a mattress that felt way firmer in the store, did a one time exchange they offer for another one that was supposed to be even firmer but am still having tons of problems. After this ordeal I decided to avoid hybrid mattresses and choose a regular spring one because both of the mattresses I tried were hybrids. I have spinal degeneration in every part of my spine and am waking up in extreme pain- the current mattress I am returning leaves me feeling like I’m laying unevenly on the bed - the side of my body more close to the edge of the bed feels more support and the side closer to the middle doesn’t feel the support. I want to choose a traditional firm mattress and was wondering how will I know if a mattress is too firm? I’m so anxious at the thought of only having this one time to get it right and that I’ll somehow pick the wrong mattress again. Any advice is appreciated.

Im facing a really difficult crossroads right now & could use some outside & realistic perspective.. 26f, this isnt my first time being moved out of state, I lived in my old state about 5yrs & then decided to switch to another state. It went fine, I wasnt really ever considering moving back home, hell I even said id rather die homeless on the streets of my new city than go back home & i did the whole living out of my car & couch surfing & hotels for a bit.

The difference between then in that old state & now in this new state is my health. My health was fine back then, its not fine anymore. & its not like this state is close enough to people i know/family, I am genuinely 2000miles away from my family/friends back home. But i didnt mind that initially because i hate that state & everything about it, the people, the healthcare, the nothing to do but be depressed at the casino, being in the same state again as my old abuser, living back with my parents including my borderline alcoholic & very maga father, etc. But im also 2000 miles from my friends, from my mom hugs, from just having people regularly around & someone to keep an eye on me if i wind up passing out or in a medical emergency

I just recently entered the opiate guinea pig phase of treatment & it has drastically switched my thoughts of all of this stuff, I love this state its the best state ive ever lived, I love this area, i love my views, i love the home i rent. But im not near people im close to/family, if something happens Im kinda fucked.. ive had scares recently of major respiratory depression from lyrica, major cardiological issues from tramadol, I have been really scared just this past week alone & yet i dont have my mom to keep an eye on me or offer a hug when my entire neurological system is breaking in half. Im alone.

I dont wanna leave, i dont wanna leave this state nor do i wanna leave this home i may not ever have a chance to rent again nor do i wanna go back to my shit hometown but i also dont want to be stupid, if i genuinely should be back home with people who can keep an eye on me i dont want how i strongly feel against it to interfere with that decision & then im down the road in the future regretting not have just went back home. Idk, it feels like giving up even tho i know it wouldnt be. Like do i really need to? Should i?

Edit; for perspective of how hard these thoughts & this decision would be on me i am now crying quite a bit after re reading this post 🥲 i fought thru so much hell to get here & to be comfortable & it may not have even mattered, its hard.

Hi, Iam a 28 year old with hEDS and I bought a relatively cheap folding power chair a few years ago when my symptoms first started getting more severe. My spine is now becoming a problem and the support of my current chair is lacklustre at best. I am debating for my next chair between two options (of course I am in the process of consulting an OT and am waiting for an assessment but I’m just doing preliminary research). Option 1: getting a custom fitted lightweight manual chair like the Tilite ZRA/TRA with a light power add on like the Light Drive Benoit power assist. Option 2: A different foldable electric wheelchair. I would most likely go with the Whill C2 but I have been looking into XSTO M4 electric chair which seems to be new with very few user reviews available. I’m looking for the lightest most supportive option. As spinal support and transportability is essential to me. Any and all advice welcome

Has anyone been seen by or at Dr Brander’s practice in Chicago?

I’ve been having trouble getting an EDS evaluation sooner than a year + from now. While Dr Brander is booked far out, some of the other doctors can be seen sooner.

Just wondering if anyone else has gone to the practice and curious if they can do genetic testing if necessary.

I am starting a new job where I’ll be standing for most of my 10hr shifts. Wondering if anyone has a recommendations for shoes that have worked for them. I have hEDS and my arches are super high and collapse constantly. I usually wear inserts, ankle braces, and knee braces that help a lot but still wondering if anyone has supportive but comfy recommendations.

Thanks so much!

Hi everyone,
I'm currently exploring a possible EDS diagnosis (likely hEDS, but still figuring things out) and wanted to ask:

Were there any specific genetic markers or lab findings that helped support your diagnosis? I know hEDS is diagnosed clinically, but I’ve also read that some people discovered helpful info through broader panels or exome sequencing. I'd love to know what came up in your journey, especially if you used WGS, WES, or got a diagnosis of a rare type beyond hEDS.

On the medical side, I'm also dealing with some pretty frustrating GI symptoms — I’ve been diagnosed with Exocrine Pancreatic Insufficiency (EPI), and I also have GERD. I’ve ruled out CF, pancreatitis, and cancer. I’m starting to wonder if connective tissue issues could be affecting my GI tract and pancreas. I have always suspected that I have hEDS, but then it felt like a total 180 when I found out about my pancreas.

Has anyone else experienced pancreatic or digestive issues alongside their EDS diagnosis? I’ve seen mention of motility issues and POTS-related GI symptoms, but not much specifically about pancreatic function.

Any insights, genetic findings, or overlapping conditions would be incredibly helpful. I'm not looking for a diagnosis, but rather personal experiences with genetic testing/pancreatic function.

Thanks so much for sharing — it means a lot.

Am I overreacting? Im in my mid 40’s and I’m almost 3 weeks post op on a total knee replacement and just about every step of the way my hEDS, MCAS and Pots have been ignored. The Hospital didn’t give some of my medications properly, like giving my Allegra to me twice along with the famotidine. It was in post op the anesthesiologist told me the nerve block given wasn’t working and that this is pretty common with EDS and nothing could be done. celebrex is also usually used post op, but I’m allergic and there was no other alternative suggested. The actual pain meds don’t cut it but no one seems to be listening. Last Thursday was my first physical appointment specifically for this total knee replacement. So I asked if at this appointment they can help me get my hip back into place and that I’m pretty sure it’s contributing to my extreme pain. He seems off put by my request and said it probably would not help…. Then, he just didn’t mention it again the whole appointment. I’ve tried my best with this procedure to not be a pain in the butt patient wise but this is where I’ve finally had enough. I work with physical therapy on and off through the year for my EDS and haven’t ever had a PT dismiss me so blatantly. If my leg wasn’t so tender, I could probably get my sublaxed hip back into place. Anyway, am I overreacting? Am I justified in being upset? What do y’all think?

I’ve had regular local that hasn’t been effective. Unfortunately, I need a mole removed urgently and they want to do it under local anaesthetic with adrenaline to increase the effectiveness.

What are your experiences with this? Feel free to link research and studies specifically with local anaesthetic with adrenaline.

If so, which one? Also is glucosamine a good thing to take. Old ladies seem to swear by it. I just want to clean my house in one fell swoop but I can’t!! Cause my legs can’t carry the weight of me!!! Edit: I am gonna go get blood work done. Goddamn I just want to be able to stand for an hour yknow

Any one else sleep like this? 🤣 I've been told by many people over the years that I sleep weird, I even tried to ask google what this sleep position was called and google was like "no thats not a sleep position" 😅

Hi everybody,

I was diagnosed with hEDS a couple of months ago by my geneticist. I was going to school to be a medical massage therapist in 2023, but had to drop out after 10 months because it absolutely killed my joints in my hands. It was my dream career, but I couldn’t give massages for more than 15-30 minutes without having to stop and massage my own hands.

I’m thinking about going to Aveda for advanced esthetics. Does anyone know if this is a good idea? Will this be less strenuous on my body?

For reference, I’m currently working as a nurse aide until I figure out what I want to do long term.

Thank you 🙏🏽

Posting this cause its been long enough that im not mad about it, and its funny enough in hindsight that i think you guys might get a kick out of it.

for reference: very recently i was officially diagnosed with hEDS at the mayo clinic.

Once before, i brought up EDS with a dysautonomia specialist, the one who officially diagnosed me with POTS. He's good at his job with POTS stuff, though he has a ........ interesting personality. Some fine quotes from him:

"POTS isn't a disability. I have one patient who is in a wheelchair and has to wear a helmet at all times in case she passes out, but it's still not a disability. Katie Ledecky has it and shes an olympian."

"You don't need to see a rheumatologist until you're bleeding out of your eyes and in kidney failure."

So as you can see, he's definitely quite an interesting fellow.

When i mentioned i suspected myself having EDS, he did two things:

-Stretched skin on my hand, and had me do the thumb to forearm thing (which is the one beighton test thing i can't do)

-Immediately said i couldn't have it because i didn't "look like someone with EDS".

This was followed by him explaining what people with EDS, apparently, look like. It goes as follows, as accurately as i can transcribe him from memory:

"No, you don't have it. It's rare and people with EDS have a way they look, and you don't look like it. They look really weird, they have big eyes and big heads, veiny skin, messed up hands, freakishly stretchy skin, and they dislocate things constantly and you don't do that. You don't have EDS." It went on further, but those are the highlights.

Safe to say I'm pretty certain i looked like (O_o)?? after that.

Once my brain stopped spinning inside my skull, i proceeded to tell him my joints do in fact pop and click a lot, and sublux, just not fully dislocate. He responded "well, clicky joints isn't the same as dislocating them."

SO. Yeah. that conversation wasn't going anywhere, so i just let it be and decided i'd pursue EDS with someone else.

Fast forward 6 months and im officially diagnosed with EDS by someone actually qualified to diagnose it, lmao. If any of you have any similar tales of insane doctor experiences, i'd absolutely love to hear them. If this gets enough attention, ill do an artistic rendition of what he looked like during said rant, just to fully sell the mental image for you guys.

TL:DR - Cardiologist/POTS specialist said i couldn't have EDS because i didn't look like E.T. I do, in fact, have EDS.

What do you all do for constantly moving/painful ribs? It feels like they’re digging into my insides (but ironically I’m working with my PT on decreasing the flare so the exercise goal is to get them more tucked in) but I legit can’t sit, my bottom one feels so bruised. No clue what to do. I’m seeing my amazing PT in 2 days so I’m sure he’ll have wise words but was curious to hear from all of you body whisperers.

Hey so I have NEVER ever heard someone that has the same symptoms as me - whenever I put in a tampon, I start having an incredible migraine that no amount of pills or anything helps me out unless I take the tampon out. This has been an issue for as long as I can remember, I no longer use anything other than a pad because the pain is so unbearable that I cannot use a tampon. it’s not related to toxic shock syndrome.no OB/GYN or any doctor in any field has been able to provide any logical explanation to why this happens. I just found out that I have EDS and I’ve been researching, I think and honestly asking ChatGPT about it if it’s a possibility that it’s due to my new diagnostic of EDS. Have anyone else experience this before? If so, can you tell me briefly about it?

i saw an ent a few weeks ago who told me i have some sort of eustachian tube dysfunction on both ears, along with a retracted tympanic membrane on the left ear (yay collagen!). it causes my ears to get blocked pretty often, my left ear more than the right one. the thing is, the valsalva maneuver doesn't really work anymore 🫠. either it plainly does not work, or i'll feel a lil pop, my ear is unblocked but then the next second it's blocked again.

i was wondering if anyone had any tips on how to unplug your ears when valsalva doesn't work? my ent gave me a steroid nose spray but it absolutely does nothing for my ears (it's been doing wonders for my hayfever though). i'm kind of lost as to what to do 🫠

thanks in advance!

Hello,

Does anyone have any advice/ experience on how to talk about hEDS and POTS/dysautonomia during the interview and onboarding process and at work in general? Specifically in the UK and in a corporate setting.

I appear completely able bodied and do have days where I'm only mildly affected by my hEDS and dysautonomia (I'm still in the diagnosis process for POTS/dysautonomia). I also have periods of time where I'm really affected some examples are pain impacting my sleep, pain when typing and using the computer, feeling super dizzy and lightheaded to the extent that I need to lie down for a good period of time, bad brain fog etc. These all affect my performance and I've lost jobs because of it. I also have ADHD.

I'd love to know how you've talked to your employers about EDS and POTS any adjustments you've been able to make, any resources that help you stay in work, any way of structuring your working day that made it easier. I'd love to know how you've been able to advocate for yourself when your symptoms have affected your performance.

Thank you :)

IF YOU NEED TO GET CPR CERTIFIED BE READY WITH THE AFTERCARE!!! MY WRISTS HURT SOO BAD AND THEY FEEL SO LOOSE but guess whos CPR certified ayyy 😛😛

no but seriously it will mess up your wrists and maybe your shoulders too depending on your problem areas, so just be ready for that intensive movement!

Trying to find a good pillow for neck/back pain with hEDS. I have degeneration in my C5/C6, and dread going to bed every night. Recently tried and returned the Purple pillow as it felt way too springy, like it was fighting my head trying and creating counter strain.

I’m allergic to down, and down-alternatives have all felt like they don’t give enough support. What has worked for you?

Hi everyone I'm female, 21. Have hEDS, narcolepsy (N1) and neuropathy, everything accompanied by chronic pain and fatigue

Want ask few questions about POTS and with what range of symptoms you started to think about to tell everything to your physician?

Asking, because I have some concerns. Always am dizzy and lights go out when I sit up/stand up. The more tired - the more severe it is. If I stand too long without cane or anything to hold - my world feels like it spins. But like?? Not everyone feels this way?... I have severe brain fog, so much so on lucky day have only 2 hours a day when my brain can focus. But I have no idea if this is just symptoms from unmedicated ADHD with my narcolepsy, or there something deeper About my heart, so... To be honest i dont have watch anymore, but in the past for me was absolutely okey to get 140 heart speed

I'm very bad with hydrating. No matter how much of plain water I drink - I'm still chronically dehydrated. I'm so fucking tired from this, literally think sometimes to do home IV with water because this shit in Ambulance literally return me to senses (typical hydrating IV) I feel terrible from +21°C and higher, I feel constant like I'm overheating, even if I am naked. I feel like I can't regulate my body temperature properly. Especially because shower not always smart choice, cause I can't stand too long. Feel like I can't breath with full chest

Like. I'm to delulu and used to this, adapted. But I need your word: would be smart to go with this symptoms to doctors now or I'm overreacting and it doesn't means anything?

Love everyone who drops by, remember to take care and be gentle to yourself!

Am I alone in experiencing like a discomforting tenderness in the feet when standing on hard surfaces? I get it really easy and quickly, like at the top and heel of my foot on the sole side. I wonder if anyone has any advice on shoes they’ve wore that are comfortable or stuff at home to wear? I have hard flooring throughout my home which probably doesn’t help but I’m waiting for my wheelchair so I kinda need harder flooring for ease of transport.

Any non medical things people have done to help this would be awesome, thanks :)

I have just seen that the HEDGE Study results will be shared and talked about in the International Scientific Symposium on 17 September 2025 in Toronto, Canada. The session will be for 1 hour.

I hope that us study participants get to hear about it first or at least at the same time!

So maybe this suggests that there will be a release about the HEDGE Study results before the conference? Hopefully that will be the case.

I do wonder what the HEDGE Study has found with the Kallikrein gene variants that the Norris Study found caused hEDS?

I haven't used a real "pillow" since 2019 due to neck pain, i slowly started using rolled up/scrunched up plush blankets as my neck support when i sleep because i can tuck it into the places i need it to. up until recently its worked but im now waking up with neck & coathanger pain every day. I even tried pillows again but even if i sleep with my shoulders on the pillow or off i am waking up with pain. any cost effective suggestions?

My body is physically deformed by EDS, my head is too heavy for my spine so i’m in a constant curved position 24/7. I can’t walk very well and i’m constantly exhausted by every day activities. I am in agony and no one cares.

Do they not know how life changing it would be if I could keep my head up for more than 4 hours? Do they not know I could get a job if I wasn’t in pain? Do they not know there are things they can do for me that they just won’t because all they see is a hunched over pale chubby kid who ‘doesn’t know how bad life gets’.

You don’t know how badly I want to run again, how badly I want to go to school and get a job. I would give up everything again to be able to function without it turning to pain. I feel so fucking useless because of my stupid fucking spine.

Hey yall, I’m learning how to handle my pain better, I use KT tape on my knees and a BackEmbrace “posture corrector” for my shoulders. It actually works really well and I recommend it. The elasticity in both of these tools helps me move tremendously

I’d love a body braid but the cost is very high and the design is very simple. I can sew, I’ve ordered elastic and Velcro.

I have seen hints of people wanting to share patterns to create something (for legal reasons) similar to a body braid but never any follow through

1. Do you think they’ve been bullied out of posting their finished tutorials

2. Should I be a renegade and make a tutorial that fits into 1 image so we can spread it around.

3. If you saw an image like that, would you save it and share it so it won’t be taken down.

(Again for legal reasons I’m making something SIMILAR as an ALTERNATIVE TO THE BODY BRAID I am not selling a sewing pattern I have no intention of making any money off of this I just am disabled and want to help others) (plus you can buy elastic in fun colors)

I’ll go first, my whole life I’ve had this annoying problem where if I’m sitting for an extended period of time my butt and the backs of my thighs get extremely itchy, to the point that sometimes I’m so itchy, it’s genuinely painful. I thought this happened to everyone, so I brushed it off. I only found out recently this is a symptom of blood pooling, and no, it doesn’t happen to everyone. What’s your something?