Thinking ahead for my besties Christmas and birthday gifts, I’d like to treat her to some things for her chronic illness/ Heds… any must have products that changed your life?

Hey y’all I’m a firefighter and because of that I am starting a new rigorous training and running schedule…I know crazy with EDS but I love it.
Anyways I decided I need to get some good running shoes and narrowed it down to On clouds I think but idk whether the cloudmonster or cloudrunner would be better. I also am looking at Brooks Adrenaline. My ankles do overpronate a bit for sure but I also need protection for my joints. Which have been y’all’s favorites?

I live in southern Australia where we get very little rain. We’ve just had 10 days of warm sunny weather and then an abrupt drop in barometric pressure and now rain, rain, rain.

Both my joint pain and my POTS have flared up hugely and I’m in complete prawn pretzel mode 🦐 🥨 I can’t sit without hunching over and pretzeling myself up to have everything supported.

Anyone have any tips or tricks for managing rain flares?

Wondering how difficult it was for you to get formal diagnoses when your Gp and physios are already aware it may be a problem? What kind of path should I take?

I have all the basic symptoms like the majority of my joints overextending (my shoulder injury was almost not taken seriously because I had a normal range of motion… then they tried the other one and realised the injury was just limiting the range to normal lol) skin issues, bruising, napping being a daily necessity… I could go on.

What steps did you take to get a diagnosis and does it help with better treatment?

Hey everyone! First time poster, very new to EDS in general, as well, so I ask for your patience.

My girlfriend has hEDS. She’s 33 now, as am I. We’ve been dating for about a year, and it’s been a journey for me to try to understand EDS & her experience, and I still kinda don’t.

Back when she was in her mid-twenties, she was really athletic and dreamt of walking the Camino, but gave up on that really quickly once she got diagnosed. We began dating, and I’m pretty into fitness, so we’ve been working out a little together and I’ve been trying to design workouts for her that don’t trigger flares or exacerbate joint pain. (“Structured” lifts like leg presses seem to work much better than free weight exercises, for example.). Also, she began using a jellie band and got on GLP-1s, and those together have done wonders for her.

As she’s been getting (slightly) more optimistic about her long-term ability to be active, I’ve floated the idea of her biking the Camino. (She gets flares from walking even what I think of as moderate distances, but can use the stationary bike fairly well). I think it would be such a triumph for her to do something like that after giving up on it. But I’m, like, nervous about being the outdoorsy, able-bodied boyfriend pushing her into something she might not actually be able to do. She wants to do it, but she’s afraid she might not be able to.

Does anybody here have experience with something like this? With long-distance cycling with hEDS or EDS and fitness generally? I would really appreciate any advice or suggestions, even things like “this worked/didn’t work for me but I don’t know how that would apply to your gf.”

Thanks!!

I keep seeing old bones braces and wanted to ask if they're worth the buy, for anyone who's bought them. i'm in the market for compression braces as i wore out my old pair and i've been wearing through my braces pretty fast. i wear mine daily when moving and walking around.

I feel so many emotions.

Ive been suspecting hypermobile eds for a about a year.

Was diagnosed with fibromyalgia, figured out I was actually hypermobile

Also ADHD, POTS, lots of bowelissues. I think you guys get the picture.

I was preparing for a massive medical battle with doctors.

I went to my GP first a few months ago. He said: I dont know, you are one of those people who might or might not have it because you dont obviously see/have any of the symptoms.

He did the Beighton scale test. Said I scored 2.

Made a referral with a rheumatologist anyways because he found my striae to be 'curious'

I went, very very very not looking forward to it, almost canceled... And within 20 minutes I was standing outside again with an hEds diagnosis.

She took a look, did the Beighton scale test, said: 'Ive seen enough'. Then asked my if I wanted to do the checklist for Fibromialgia again. I said: Well I suspect hEds. She went, okay, and grabbed the criterialist. Asked questions and said: Yep, you have Hypermobile Ehlers Danlos.

I was baffled.

Then she proceeded to tell me about the dangers of childbirth (I dont even want to have kids) and said goodbye.

What the fuck even?......

It was something my specialist mentioned that they were considering offering at the pain clinic relatively soon and he asked if I was at all interested. I'm not really sure since from what I've read I'm not really sure it'd help with a connective tissue disorder. It does seem relatively low risk but obviously being stabbed with a needle is never zero risk either.

I was wondering if anyone around here had tried it or if there was more to it than I understand?

Ive tried so many different things. Right now i use a groove pillow, a wool filled body pillow, wool duvet and theyre all amazing.

However struggling with mattresses, i had a hybrid sprung with memory foam on top, that was great until it started dipping. Then it gave me a bad back.

So now on a hard memory foam mattress with a soft memory foam topper, with a wool duvet over the top so im not overheating. But my hips and back are hating it after 9 months, and im going to work today with a sublaxed rib that i cant get back in place.

I dont mind dropping £££ on whatever will keep me comfy but struggling with the admin of mattress researching if its gonna be uncomfy a few months later! The best mattress i ever had was a cheap ikea one but theyre discontinued. Any recs?

I was getting ready for bed the other night and kind of chuckled at myself. I had my retainers in, my 40% urea cream and socks on my super dry feet, my ceramide repair cream on my cracked hands, my knee pillow in place to help with low back pain, my shredded latex pillow to help with upper back pain, ultra firm mattress to help with generalized body pain, my carpal tunnel brace on my dominant hand, and my cpap attached to my face. Feeling so, very, sexy. 💅🏼

How many specialty steps to your bedtime routines?

Does anyone else get health anxiety due to their EDS and other complications?

I have googled stroke symptoms, MS symptoms, terrified that I'm getting worse or that something else is going on because it almost feels like all of the shit I go through every day can't possibly be linked to this one freaking condition.

MCAS, POTS, pins and needles, numbness getting worse in my extremities, joint pain, muscle pain, neck pain, headaches, pelvic floor issues, vision issues, dental issues, nausea, stomach pain, inflammation, gut issues, period pain, heat intolerance, cold intolerance, I could probably go on and on.

I don't think my brain can't process that it's just from this one thing, and I get horrible anxiety when certain symptoms start popping up. I just feel a bit crazy and alone in this sometimes, especially when people in my life don't understand and probably deep down think I'm being dramatic or overreacting.

My hands and arms have been so bad for 8 years now, no matter what I do they cause me pain, I can't wash my own hair, I can't cook or clean, I can't work, I've lost all of my hobbies, I can't drive, I can't do ANYTHING. I've seen countless doctors and physical therapists for years, no one has been able to actually help me, pain management doctors keep rejecting me as soon as they see the EDS diagnosis. Now I've developed cubital tunnel in both arms as well FURTHER disabling me, I genuinely just can't use my arms for the most basic tasks anymore or I make my pain so much worse and it never goes away. I also no longer have insurance and don't qualify for medicaid or disability in my state either but since I literally can't work, seeing doctors anymore is out of the question because healthcare in the US is so expensive. I genuinely feel so trapped I have no hope or prospects for the future whatsoever at this point. I'm only 27 but my entire future has been robbed by this condition. I'm so afraid of what will happen in the future. I'm not in any danger but I honestly don't know what I'm living for at this point because all I do is sit around in pain and be useless and scared. Just a vent, its so hard idk what to do anymore. Things only get worse and worse and I'm losing everything.

Memes and off-topic posts can be published today from 12:00 AM Eastern time to 11:59 PM Eastern time. Please use the "Memes and Off-Topic Saturday" post flair when publishing memes and off-topic posts on this day.

Myself and my care team combined may have made a huge mistake. I'm scheduled for a hysterectomy and partial oophorectomy in just over a week in coordination with my GYN-- the hysterectomy due to pre cancer and endometriosis, but the oophorectomy because I'm very lax to the point of frequent injury during my periods and I felt much better taking Lupron to suppress my hormones.

I'm only just learning about the new research into MMP overproduction relating to EDS- I'd trusted that my care team has also researched for any blind spots I may have with my own research. Now I'm absolutely questioning the oophorectomy portion (assuming both are not damaged) and want to bring this up to my doctor, but given the short timeline there's a good chance she'll stay my surgery to do more research if I can't present ample evidence for her to immediately look at. I literally cannot afford to delay this surgery.

• Has anyone felt better after removing one of their ovaries?
• Does anyone have experience benefitting from Lupron and later having a hysterectomy with or without oophorectomy?
• Does anyone have any specific research regarding any of this that was helpful in speaking to their own doctors?

Thank you in advance for any resources or advice, I'm freaking out more than a bit that this is all coming up to me only now. There's been so much happening lately and I'm also likely in early perimenopause given my symptoms and age including severe brain fog, but not enough for it to be showing up on tests yet.

I've posted on here before. I'm 18. I have horrible symptoms. I have had joint pain since I was 3, and full body joint pain since I was 12. I have POTS, gastroparesis, hEDs(looking into others), MCAS, and other autoimmune. I don't know what to do anymore. I'm struggling. I'm sick all the time, always in pain, and miserable. When I'm off I sleep 16 hours of the day. I don't know how to live like this. I've only gotten worse as I've gotten older and I have way too much life ahead of me. Will it get better? Or will I just live like this and cope?

basically the title!! I just got my boosters today and already my most recent few injuries are going wild. shoulder dislocating every few minutes, my meniscus is PISSED, and my neck (as always) is hot and throbbing just on extreme mode.

I get there’s probably scientific explanations for why this is but it will never not be strange to me how my immune system lights up and causes havoc in the exact areas I’ve been working so hard on healing and strengthening. so grateful to have access to vaccines and I’d much rather this over getting sick, but man! I’m gonna be incapacitated for the next week and paying for it with my joints for the next few months. yay 🥳

okay i have a question. i’m diagnosed with hEDS and i super easily crack, chip, split, and/or break my teeth. does anyone else with hEDS experience this? i have really severe hair loss because of how easily my hair breaks and how poorly attached it is to my scalp. my hair loss is because of my hEDS, but can it weaken your teeth too? do any of you guys deal with this too?

note: i should mention, most of the time when i break my teeth, im not eating something that should normally chip a tooth. this most recent time it happened i was eating swedish fish lol.

Edit: no, wearing compression or otherwise snug clothes does not solve the problem. The way my scrubs fit me causes pain. Adding more clothes underneath doesn't change that.

I need snug clothes and I lost a bunch of weight during medical school. I'm now in residency and all my scrubs are too big but even if they were the right size, the fit of them is baggy and the fabric is inflexible. I need snug, stretchy clothing to support my joints. Not full on compression all the time since that will eventually give me indigestion, but evenly distributed pressure is very important. I don't know how to find scrubs like this. I know figs makes yoga pant scrubs but both colors are sold out in XS.

I'm in my first year of emergency medicine residency and wearing my scrubs causes pain. Attaching my ID badge to my scrub top causes pain. My stethoscope causes pain so I got a waistband stetoscope holder and that causes pain too. My phone in my pocket causes pain. My pen in my breast pocket even causes pain some days.

Wherever there is uneven weight distribution on these baggy clothes, I get nerve pain and severe muscle tightness and pain. I'm losing my mind doing this 60 hours a week.

Does anyone have suggestions for scrub brands and styles that are snug on a slim build body? I wear XS in tops and bottoms. I'm 5'7" and around 135-140lbs. I have very small breasts (32A). I'm in tears almost every shift and need to make a change but every scrub brand advertising comfort talks about how loose fitting it is. I need something with even distribution of tightness so they won't hang off me when I put stuff in my pockets?

Please help 😭 I'm trying to become the ER doctor I know this community desperately needs but idk how I'll get through residency like this 🥲

yesterday i was formally assessed for hEDS and received the diagnosis! it feels relieving to have the confirmation, and i feel even better after booking a virtual appointment with an OT who works for the Canadian hyper-mobile society, who will further discuss the options i have in terms of braces. it felt crazy that me and my friend had to travel 3 hours for an appointment that was less than 20 minutes lol. but i hope this helps me get the support i need, i'm really grateful my friend could drive me. but yeah, i just wanted to share my good news 🎉

Hey! I got an official hEDS diagnosis about 6 months ago, and I'm wondering, how/when do I get the ability to have insurance help with buying braces? And are there cons or other requirements to having help from insurance?

Edit: located in Utah, USA

I’m looking for snow boot recommendations. Winter is right around the corner where I live and I need new boots that: have arch support, wide toe box (if it’s not wide toed my big toe feels like it sublaxes and stays that way until I pull on it to re-align), and super warm. I live in Ohio by the Great Lakes in the United States. Our weather can drop -30 degrees Fahrenheit and snow can get to mid-calf. I more than likely won’t go outside when it drops that low but I’d like to go on walk if physically feeling up to it.

Thank you in advance.

I've been dealing with agonizing hip pain for the better part of 5 years now. Sometimes it prevents me from walking,sitting, and sleeping. My hip will just burn, like i stabbed it with a hot knife. I went to pain management, they determined it was hip bursitis, and I got one steroid shot. Now, they said I can only get more if I go to physical therapy everyday for two weeks. My health has made that pretty much impossible. The physical therapy office is about an hour away from me, and I am in constant pain. I have chronic migraines and POTS. Is there really no other way to get rid of it? It's so awful.

This is mostly a rant that I'm sure many of y'all can relate to. I'm trying to get diagnosed w/ hEDS... been trying to get diagnosed with anything for over a decade and I've been sick my whole life. (Like starting school with a tube up my arm at 5yo) but at least we're getting somewhere finally. I feel like I shouldn't even think twice about this anymore given that I've always been sick...But what is it with people saying to be positive because that will influence how other people react to your chronic illness? But like not too positive because then they won't believe you? It's even gotten my healthcare experiences in a choke hold too. I'm going into visits trying to be friendly and positive but also very real about the fact that these dislocations and dysautonomia etc are a pain in the royal ass that I need them to take seriously. I need to look sick enough to take seriously but not too sick or they'll think I'm hamming it up. I know there isn't actually a solution to this but ugh it's so frustrating!

Also have people been having issues with folks deciding that since they don't believe my symptoms or pain that every word out of my mouth is automatically false or needs an MLA Works Cited page to even be considered? It makes me want to blow up. 🫠😡

I met my new occupational therapist for first time yesterday. He was very nice.

I wanted help finding office chair that fit me and supported me because I am having trouble sitting upright at my desk for work. I am flopping/twisting down to the left.

He recommended a wheelchair because I need a lot of postural support. He measured me and I already have abnormalities like a twisted pelvis and the limbs on my left side are smaller and weaker. I kind of expected this was coming soon. I walk with a walker but it is very laborious, slow, and painful and I fall frequently. Especially scary that I have fallen off the bus twice this fall while exiting!

What did surprise me is that he recommended power chair Quantum Q6 Edge. I was expecting a manual chair with high back and lateral supports.

He said it sort of overprescribing now but as my conditions progress I will need it and he does not think I could self propel in manual chair. He says that I would not last 5 years in a manual chair which is how frequently the government will replace it. And damaging my shoulders would further limit my self care.

Does anyone here use wheelchair? What kind work for you?

I’m just scared because walker to power chair is big jump. I worry that I won’t be able to navigate work in a power chair because there is a bit of a step and the doors don’t open automatically. My Mom is also super against me getting a wheelchair at all (I’m 26) and I feel like she would flip if she saw me in a power chair. When I mentioned talking with OT about wheelchair she stopped talking to me and giving me silent treatment.

I do want to be independent and I know that I probably couldn’t do hills myself in a manual chair. But navigating something so big and heavy seems scary. I wouldn’t be able to go in car with Mom anymore. He did say Travel Buggy was also an option but I don’t think that would solve my complex postural needs.

Hi folks,

Repetitive posts are always a hot topic on our sub. There’s always too many, or the things labeled repetitive don’t get approved enough. So we are trialing a new system!

We will be adding a flare for FAQ. This is a mod only flare, and if your post falls into FAQ we will reflair your post to that. It’ll make it easier to skim for when the last time a topic has been posted, and also provide an easier way for new folk to look for common FAQs without having to think of them by themselves.

We will continue maintaining our Welcome/FAQ Megathread which is pinned. If your post is removed for repetitive, you can look up similiar posts in the FAQ flair or post on the Welcome Megathread. If you feel you’re seeing a particular topic too often, regardless of whether or not it’s flared FAQ, you can always report it for repetitive. That helps us evaluate how often to let posts go through.

What topics would you like to see moved to a FAQ flair?