why isn’t gumby he the face of hEDS.

hi, i really need help.

before i ever knew i had EDS (and POTS and MCAS and all the rest) i tended to stay in shape without much effort because i actually enjoy fitness, whether it’s weightlifting in a gym to hiking a mountain.

everything became harder for me about two years ago. i still don’t know why. maybe it’s stress, hormones, a flare (that i couldn’t have recognized at the time), something else or a combo, i felt tired all the time. even everyday motion felt like it took more out of me.

cut to now, i have no resilience whatsoever. i am constantly tired. i try to exercise, knowing i am operating at a level far below where i was, but now i get horrible DOMs even to the point of feeling like i have the flu.

i’ve been working with a physical therapist and after weeks of paying the copay and showing up, i don’t feel any better, i just know all of these limitations and my body doesn’t feel like mine anymore.

please, i am begging: if anyone has been through this phase and gotten through it to the point you can be active again, please tell me how.

if anyone just knows what’s happening and how i can get through it, please tell me.

if there is some medical provider or fitness professional or whatever, anyone who can help, please get me in touch.

i need to fix this now. it’s clear that i will never suddenly feel like i have the energy, and that each day i am just getting weaker, which means it is getting harder.

with all the alternative wellness approaches out there, all of them offering the promise of “finally feel like you again” for $1000+, i truly don’t know what to do. if i knew it would work, i’d gratefully go for it, but i absolutely can’t keep wasting my time and energy going in circles either doing nothing or going in the wrong direction.

in the meantime, i am going to try to do 20 minutes of some kind of movement every day and hope that my body actually starts rebuilding muscle, enough so i can get to a point of consistent exercise, not just movement, and really make progress.

My boyfriends chair broke. He likes the one he has, which is the same I currently have. I thought about giving it to him and getting a different chair, the white one in the first photo. We currently each have the chair in the second photo. I like it when I sit normal. Sometimes I stick a breastfeeding pillow on the seat and sit where its under my knees and wraps around the side of my hips to hold them in. But as you guys know, people like us tend to sit weird lol. I usually sit in weird positions because it feels better. Legs all over the damn place. Thats when the chair isn't comfortable.

So the question is, do any of you have the white chair in the first photo and what are your thoughts on it?

I did a very small amount of yard work yesterday and my right knee went out.

It's an injury partially due to hyperextending my knees and working over a decade as an ece teacher (squatting to be eye level with kids).

The weather changing and getting colder does not help.

My hamstrings get super tight and something in the back of my knee hurts.

I've done physical therapy before for it when I had insurance.

I iced it right after it happened. Medicated. Iced more. Put my knee brace on. Then tried to still have dinner with my partner.

I cried walking from parked car to restaurant because it hurt and I had just started to have regular movement back in my knees....

Then I got home and cried. Woke up and cried and wound up sh myself and I am so mad about that.

I hate this.

I hate that I don't have good medical care and don't have the energy to figure it out right now.

I hate every day being a struggle.

I hate that just the way I sleep can injure my body more.

I hate the American Healthcare system.

I hate that multiple jobs have been able to let me go by putting me on unpaid medical leave. I hate that I don't feel like I can exist in the world the way I am.

❤️ Thanks for listening to my vent.

I am safe just fucking miserable and sad and full of fucking rage.

Disclaimer: I am not seeking any form of medical advice. I have a team of doctors that I see regularly and I got the "health" side of things kind of working. Also, this is a random throwaway account I made awhile ago, mostly because I dont want this on my regular account. I haven't been very public about my hEDS only because I'm just not sure about it. And while its nothing to be embarassed about, I guess I just feel weird about having it. Like people look at me and think "you use that as an excuse for everything" if that makes sense.

So, I recently was diagnosed with hEDS about three months ago. It wasn't something I seeked out myself- my PCP noticed some things, was very concerned, and referred me to genetics. Bam, unexpected diagnosis. Ive started going to PT for my knees, and i have an appointment to discuss ankle braces and get x-rays, ect. done. (I forgot the name of them im sorry!) Since my ankles have no stability and my knees are definetley super flexible. My issue is... I dont know, I feel like i dont have EDS.

To start, no one in my family has been formally diagnosed with it. Im the first one to have a diagnosis. Ive always dealt with the joint pain and the hypermobility, but i assumed it was normal and just from always sitting/standing weird and "general laziness" (which is kind of from my fatigue. The fatigue has been kicking me BAD recently though). The geneticist appt. I had was a bit iffy. The doctor was super nice, though I "almost didnt get diagnosed." What set the geneticist over was the strange scarring on my back from my cystic acne. (She did follow the official criteria). All of my scars are raised bumps instead of being craters, almost like hard little knots. I dont have typical scarring, but the scarring i have didnt seem relevant to EDS? If that makes any sense anyways. And of course, they're all over my upper back and shoulders. I deal with joints popping all the time, but I've never had anything randomly dislocate. I dont know, I just cant shake this looming feeling of "i dont think I actually have it and im just overreacting about my body."

Did anyone else go through this? I know there are many other forms of EDS that are much worse and debilitating, and i wish this dumb thing didnt even exist, but i just feel like maybe mine isn't that bad and maybe i dont even have it. I know hEDS is "the best one to have if you have one" though of course, its not good to have it at all. Maybe I just have hypermobile joins and deal with some pain from it. PT has definitely been making things worse with my knees in all honesty... and the PT just says its normal. UGH. I dont know. I feel like a huge imposter and I cant shake the feeling. There's all of these people that are lovely and unfortunately deal with this, and then there's me and I feel like i just dont have it bad/have it at all. Its definitely a strange feeling.

Thank you all for listening to my long rant. I appreciate everyone here <3 (from a long-ish time lurker)

hey team! im going to a music fest in a few months and im trying to make a plan to support myself. i had a pretty rough time at the same festival last year and my joints are a bit worse than they were then.

i have hEDS, i primarily have issues with my hips, knees, feet and shoulders.

i have orthotics for my shoes and i love compression for my knees but i find that the knee compression tubes roll down a lot, so if people have tips for that i would appreciate!

but yes, what helps you at long/ hot events like this? what are your must haves?

Hi! I have HSD and a few symptoms of EDS, one of them being that my skin does not heal well leaves bad scars

I recently got bitten by a heap of sand flies (Aussies / New Zealanders will get it), and I want to know if anyone has ideas for how I can get the bite marks to fade faster? Do you have any magic moisturiser suggestions? Please I’m desperate 😭

I only just had bite marks fade from bug bites I got in May so I’m hoping to get these bite marks to heal faster 🙏🏻

Just to preface I don't have a diagnosis but just have a general question.

About 3 weeks ago laying in bed i moved my leg over and my hip popped and I've been in pain ever since. My doctor got me to have an x-ray, there's no fracture (on the upside she's wanting me to get assessed for ehlers danlos). I was just wondering if that's common for there to be no fracture but heaps of pain? Also if anyone has any pain relief tips that'd be great hahaha. Thanks :)

Hello! I will be moving in 3 weeks, and I have started packing today. I have moved countless times, but the last move was the 1st with my fibromyalgia and hEDS flare ups.

The last move was so bad I ended up splitting and was soon diagnosed with dissociative identity disorder. The pain, exhaustion, and stress on my body was too much. I have no memory of packing my last apartment so I don’t know what I did wrong. That’s why I wanted to get some advice from y’all!

I live in a 1 bedroom fully furnished apartment, with my emotional support dog, and will be hiring movers to move everything. I am moving down the street so it won’t be as long of a day.

I'm currently 21 years old and in college. I've struggled with extreme fatigue now for many years. I've received multiple narcolepsy diagnosis's, an idiopathic hypersomnia diagnosis, as well as a sleep apnea diagnosis. I'm so tired. I feel so alone. I feel so angry. My entire life revolves around thinking about the next time I can be in my bed. I just feel like there is so much i need to do and get done actively but it feels like there aren't enough functional hours in the day for me. Anytime im not in my bed, im thinking about my bed. Even after just getting up and attempting to do work, all i can think about is laying down. At all times during the day that im out of my apartment, im thinking about when the next time i can lay down is. It feels so isolating to deal with this, because no one will truly ever understand the extent that it affects me. How debilitating and unfair this feels. I feel so alone. I just want to cry to someone but i have no one to cry to that will understand without thinking im being dramatic. Some days it weighs really hard on me, this lonely feeling. This feeling that nothing i will do will change this. This feeling that potentially for the rest of my life I will feel like this. Im scared i will waste my life away being tired and never accomplish all the things I want to accomplish. i will live with so much regret if thats how my life goes. I hate that i am so passionate and want to achieve yet this stands in my way. It doesn't feel fair. I'm currently taking multiple medications for my tiredness/ fatigue. I just start LDN a month ago, still hoping to get something good out of it. I'm also on track to have jaw surgery later this (have somewhat severe overbite + sleep apnea). I don't know what Im expecting to get out of making this post. This has been really heavily weighing on me recently, and it's hard to not just give up hope. I genuinely feel like if i have to live the rest of my life feeling this way, its not even worth it. Im not going to hurt myself or anything but it just feels so unfair that I might live the rest of my life like this. Please, you don't have to tell me I could have it worse with other things, i know that, and Im grateful that I dont have more on my plate. But that still doesn't change how hopeless this feeling is. There are so many things in life that I want to achieve, and it feels impossible to accomplish when I can't even go an hour into doing something productive before the severe urge to lay down and nap hits me. Please, can anyone just share anything that has helped them? I am also just wondering if others are dealing with the same feelings. Thanks for reading

my skin has always been super sensitive but only recently did I become aware that it could be connected to hEDS. I’m currently 3 weeks out from knee surgery after a patellar dislocation did some damage that had to be repaired. Almost right after removing the bandaging, the brace began severely irritating my skin. Ever since it feels like my immune system is making my skin go haywire even more than usual. I have itchy dry patches on my limbs that will crack and bleed if I think about scratching them as well as some patching of angry and itchy heat rash. There are entire brands of skin products I can’t use (Burt’s bees) and I can’t use any muscle pain relief patches or creams due to allergic reaction. I am also allergic to Nickel, pollen, several medications, and this past summer I had to be put on a 15 day course of steroids for a very severe case of poison ivy. I have the signature doughy skin that’s typical of hEDS but I am not sure if this sever sensitivity/immune response is a shared experience at all? I’m also fairly intolerant of extreme temps. Any product advice is appreciated. at this point the only things I am certain are helpful are oatmeal baths, reducing friction, and trying VERY hard not to scratch. Any info or tips appreciated.

I’ve tagged this as discussion but if I was able to I was also going to tag it as helpful tips and similar experiences!!

Anyways, I finally finally have my hEDS diagnosis after seven years 🎉🎉🎉 and I can finally put a name to these experiences I’m, well, experiencing! In light of this I have also learned that my leg length discrepancy is not in fact because one leg is actually shorter than the other, and is actually from my leg slowly sinking/compressing over the course of the day as I move and walk. Fun stuff right?

I just recently got out of physical therapy because I was showing improvement (yay!!!) and unfortunately the physical therapy did not help with this issue, I’ve noticed a lot of my hEDS symptoms do not improve no matter how physically fit I am despite how much doctors say they will. Anyways, according to my PT my pelvic floor and pelvic muscles are beautiful and working accordingly which leads me to believe the core of this issue is my terrible evil awful scheming knee.

I have been recommended only neoprene braces, and also the body braid, which I’m sure the neoprene braces would be great for some of my other joints but I think my bad knee might need something extra special to not… do.. that. I am going to revisit this when I see my primary care next which should be soon because I’m due for my yearly physical, but in the meantime I would like to open up discussion about similar situations, experiences with different types of braces and supports, and anything else that you guys think might be applicable? I’m very excited to confidently say I am part of this community, even if the diagnosis sucks it’s nice to know I’m not alone and I’m not crazy so I really want to talk about all the options other people have explored that I might not be able to access through the limited network in my city since I’m in pediatrics/adult limbo.

I’ve also been exploring the idea of mobility aids for bad days but that’s going to be a bit of a hard sell because everyone seems to think all my problems will be fixed by working out more despite the fact my problems were still there when I was at my fittest.

And I wanted to add before I open the discussion that I will NOT be using the body braid, I looked into it deeply and I even got to try one on and all I could think about was how badly I wanted to rip it off. I’m sure it would be helpful, unfortunately every other part of my body is not inclined to agree.

Edit: omg sorry for writing an essay

Ive only been seeing specialists for three years although I suspect most of my childhood issues were caused by the condition. I’m 19F and I was only diagnosed last (?) year after having the HSD diagnosis given and taken from me like every specialist appointment.

Anyway, im bendy in all the wrong places according to the beighton and have struggled to get a straight answer of where is actually bendy. (Yes these conditions are more than being bendy but for the sake of this rant bendy is the main bit) My hands are scarily bendy even compared to hEDS friends, my hips, knees (just not in the beighton direction? It’s weird) we’re all confirmed to be bad. I asked about my shoulders as I know they can be problematic but my former PT literally just shrugged..

I had never dislocated but I was told I would know if I did so many times. (Genuinely will never not be annoyed at being told this)

Which was wrong I dislocated my dominant shoulder. What i was doing shouldn’t have caused a dislocation. I didn’t even know I dislocated it. I figured oh ow it’s subluxed and then I accidentally reduced it myself. Carried on until the next day where I ended up in the ER. The amount of damage I managed to do to my shoulder is staggering. I have a hill sachs, so it was definitely a dislocation (no confirmed tear but like o don’t like my chances(, several other things and somehow nerve damage. I’m so annoyed because no one will touch my shoulder until the nerve damage is assessed but so far it’s just been a fun game of medical pass the parcel where no one will assess it. And I’ve got an appointment with the third specialist but it’s months away. I already feel so defeated. I’ve had so many drs shrug and pass me along for what I thought was not a complex issue. Every dr has agreed that something is so not right but so far no one had been able to help me. I’m used to pain by now although it’s still so hard to deal with but the weakness and physical differences in my arm are agonising.

I was in a highly competitive uni program that I had to withdraw from. Which genuinely broke my heart. im unfortunately the type where my uni defines so much of me and genuinely means the absolute world to me I worked so hard through so much pain to get to where I was. Uni was my sole way to connect with most of my family. I’ve had quite a few friends pull away because I haven’t been able to do a lot. Most of my family think it’s somehow my fault or that I’m making it up.

It’s been almost two months since the big evil (dislocation day) and it’s getting worse. I’m so confused lost and I feel so isolated. My care team are all supportive but the pity is hard to handle. I can barely move my arm and all I want to do is get back to uni but it’s my dominant arm… I can’t even crochet, use a knife, write, do my hair, I struggle some days to hold my phone it’s driving me insane. I don’t know what to do and I feel so alone. In previous years the condition has caused so much pain and I’ve missed out on so much and I know it can be worse but I don’t even know what to do about this. I guess I was just hopeful someone could relate or offer a little bit of advice…
In any case if you’ve read this far thanks for helping me feel a little bit seen :)

Hey guys, im living in Europe and would really like to be able to drive without stress. In the past i had a few lessons but it felt really stressful to what I later learned was CCI and proprioceptive dysfunction.

Does it get easier with time? Would really appreciate the feedback!

I’m 19F and was recently diagnosed with hEDS after struggling with it for years, and it’s only getting worse. It mainly affects my knees, and any physical activity prompts insane amounts of pain. My knees buckle and pop out of place when I walk, and I deal with debilitating chronic pain daily. I’ve recently been having more and more pain and discomfort from just standing! I’m only 19, and im really scared that in the near future I won’t be able to walk comfortably. I’ve done physical therapy, but none of it has helped. I feel so alone and so exhausted..

I am looking for a collapsible cane that isn’t crazy expensive. I’ve been having more frequent subluxations in my knees and hips so I want to just get weight off them when I walk so they can heal probably.

Any recommendations on ones that aren’t like expensive but I can get quickly?

His kid had a christening. Dude apparently turned in a born again Catholic since last time I saw him and he kept asking how often I attended church and if I was praying enough because if I did that then God would heal my afflictions so if I wasn’t doing it enough I should do it more so God would perform a miracle.

That pissed me off so bad it nearly got violent. Like, I’m Catholic too but I’m not like that and fuck did it feel insulting to hear that. Like all this is my fault for not praying hard enough.

Like buddy I wished it worked like that but it don’t. This ain’t going anywhere whether through prayer or not. It’s not gonna suddenly make my collagen function properly.

Ugh I just can’t.

My wrists give me a lot of grief and I T-Rex really bad when I’m sleeping. All of this leads to awful pain in my hands, wrists, and forearms.

I’ve tired a variety of braces and prefer lightweight band braces for the day, but need rigid and comfortable support at night.

These affordable braces have been amazing. I don’t fuss with them when I’m sleeping, I don’t sweat or overheat, and am waking up pain free.

… and they come in a bunch of fun and cute colours!

Purchased from Amazon Canada 🍁
https://a.co/d/0dGuB5mb

I know APS is under diagnosed but I was wondering if this was common among patients with Ehlers Danlos. I've been diagnose with the hypermobile form but didn't get tested for the vascular form and other subtypes (EDS doc said it was unlikely) I also have severe endometriosis, Long Covid, MECFS, dysautonomia, POTS and MCAS.

I got my auto immune testing back and the anti beta 2 glycoprotein igM are slightly elevated (13U/ml) N= <7 and the igG is 8 which is also limit range. Last time I got it checked I only had igM of 11 and my doc said you don't get diagnose with only one marker and it was probably false positive. She's on a leave for the rest of the month so I don't have any interpretation yet.

Edit : I also have the anti cardiopline igM at 24. Normal is <10 , 10-40 is limit and > 40 is high. Now i'm super depressed.

I'm only 28 and APS is a scary diagnosis because I know nothing about it. I have no other auto immune markers and tested negative for Lupus and other conditions.

On my tik tok you can see in a video where my hands hyperextend. Someone messaged me on tik tok asking if I could send them photos, videos, etc, of my hands doing this. They asked I’m not joking like 10 times saying things like “I just want to make sure it wasn’t a filter” “Google doesn’t show anything” with me continuing to try and explain that it’s not good for my joints and I wouldn’t be doing that.

I know I shouldn’t have let the interaction go on as long as I did but I genuinely thought it was just someone curious about the condition and I love educating people about what we deal with every day but this just felt…weird. I ended up blocking them but has anyone else ever had an experience like this?? I kinda chewed them out for not respecting no or my bodily autonomy which I feel a little bad about but it was just so strange?

What are your favorite knee braces to prevent hyperextension? I work clinic all day on my feet and I am looking for something I can get on Amazon hopefully but I don’t want to spend money on something that won’t work for me. It needs to be able to fit under my scrub pants. I’m trying to be mindful about hyperextending at work but it’s hard to keep that in mind all the time with a busy schedule.

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Hello zebras ❤️ Glad to find this sub. I've been in chronic pain since childhood and tried many painkiller even to the point of struggling with a opiate addiction in late teens (tramadol). I wasn't diagnosed yet but it's *very* likely eds and endometriosis. I occasionally use wrist braces and lean on things all the time, been thinking about getting a cane. I use ibuprofen, paracetamol,nimesil,dexoketum,algifen, heat therapy and other pain relief daily. Not together of course. I'm getting worse lately, just hit 25 yrs old and the pain seems to not care at all about the painkiller regime any more...I'm spending over two hours on the floor daily. I don't even have a job I'm taking care of a household. I currently can't go to a gp/specialist or afford more expensive devices because I'm moving countries. I know this is kinda a loose ramble,but any and all advice will be appreciated ❤️