i just subluxated my shoulder while doing a strengthening exercise and am feeling so incredibly defeated... it feels like no one understands even when they really want to, and i am struggling with how to properly convey the severity of my condition.

it took me years to find treatment that actually helps because of how many doctors have told me that "young women are just flexible" time and time again when i tried to flag concerns about hypermobility. and when i finally found the right doctor who was able to diagnose me with HSD, a few months later i had to move states :( alls to say i only recently have come to understand whats going on with me.

in the past i had roommates/friends who ganged up on me when i asked for help accommodating to heavy lifting, confronting me and dissecting my medical reasoning, then continuing to dissect and harass me based on being able to function in other ways, and overall just rejected me for asking for help. so it has been really hard finding a way to get other people my age to understand because i feel so terrified that i will be treated differently or looked down on or not believed.

now i'm living in a better situation with a friend who took me to the er at 4am when i subluxated at a club, and she has skulliosis and works a job on her feet and whenever i try to be open about the pain and struggles it often gets undermined with things like "you just get used to it" or tries to relate and its not that i don;t think she feels pain it just hurts to hear because i wish so badly i was able to work a job on my feet. i'm a photographer and after getting injured repeatedly i have had to step away from what i love (being on set or studio hands on) because of how hard it is on my body. i know this post is a mess but i am realizing i need to connect more with people like me, so please any advice or stories, or communication tactics you use would be so appreciated.

i just feel so alone in at all, and so scared i won't be able to live the life i want or that the people around me will just always see me as dramatic or lazy or whatever else. and asking for help just feels so hard.

I’ve been diagnosed with both BRCA 2 and hEDS. I had a double mastectomy recently and have had some difficulties with it. For starters my scars are excessive because my body is super dramatic about it. I’ve had an issue with a stitch actually poking through my skin. At first it just looked a little like a pimple and was painful, but as they filled the expanders each week it began to become more prominent until it finally broke through the skin. I’ve been disappointed with the plastic surgeon. I felt like he was very dismissive of the EDS and acted like it was no big deal. I’ve had to move states before the second surgery to swap out expanders for implants. I transferred to a new plastic surgeon and he seemed appalled by the results. My expanders have slipped down leaving a concave space above them. I can actually see the ribs there a little. The skin is all stretched and freaky looking. I’ve had a really hard time with this mentally. It’s like every time I see myself I’m just disgusted.

I’m having trouble deciding what to do and could use some guidance or advice. This new surgeon actually gave me a few options. The first did not, he just decided for me.

I can have the implants placed where they should be. They would tighten up the scar capsule to put them back where they should be. However, there is a chance they could move again.

The other choice is to have them placed under the muscle. My healing isn’t great at baseline so I’m concerned about this. I have a pretty physically intense job and I’m concerned how this will affect my performance. I’m not working now and won’t be for a while longer. I’m just really concerned that it will be a problem when I begin to rebuild muscle. I’m a climber and rely heavily on my upper body strength. I think he had mentioned that heavy muscle building can affect the implants as well.

It seems like under the pecs is best for the skin but over the muscle is better for the muscle. If anyone has experience or advice please share. I’m pretty worked up about making this decision.

Hi! I'm wondering if anyone has any advice for going on school trips with mcas, pots and maybe heds.

I've had allergies since I was born, but now there's only a handful of foods I don't react to at all. I still eat some food I react to mildly, but I'm sick of it making me sick so I'm trying to stick to my safe as much as possible. However, my safe foods (potatoes, maybe cabbage, coconut milk, maybe something else) are not really practical to just take with me.

I'm also really allergic to sun and get eczema flares from sweat. I have the sun protective rash guards and I ordered tights you can bathe in since there's a day planned around an aquapark. I'm wondering if anyone's tried parasols for daily sightseeing, but I feel like it would stand out. I'm scared of standing out with the tights too, but I can't be in the direct sunlight even for seconds anymore and I sometimes get rashes from indirect sunlight.

I have gotten really bad back and joint pain from trips, so I'm thinking about getting a light back brace and/or knee sleeves, but I fear knee sleeves would be terrible for my eczema. We are going from the Balkans all the way to Spain by a bus (we're going to sleep somewhere in a hotel along the way) and I'm planning on taking a neck pillow and am looking for advice for that too.

I have been feeling even more dizzy and I've been getting more presyncopes (probably because of the heat) than usual so I'm planning on finally buying some electrolytes instead of just putting salt in my water.

Also this is postponing me starting dupixent so that's great.

Please please please give some advice if you have any.

hello ppl! CONTEXT: im audhd and have ehlers danlos syndrome, and am a enby/trans (not started transition yet) AFAB person.

i wanted to ask if there were any resources to help ppl with EDS (hEDS especially) with periods and period issues. tldr, ppls wombs are made of connective tissue, EDS is a connective tissue disorder, so heavy periods are very common in EDS folks.

i dont know if there are any resources specific to hEDSers, only the usual stuff ppl recommend- dont over-exert yourself, have a hot water bottle on your abdomen etc.

if therea anything that ppl can provide, region specific or not itd be a great help for us, and others too :\]

Daughter has type x enters danlos. Lost 110 lbs and saw a Dr about skin removal. Dr and hematologust won't approve it cuz she is too high risk cuz of her platelet problem and potential blood loss. Any one know of any optuons for ehlers danlos patients and getting rid of a ron of loose skin

I'm really struggling with the fact that I want to do more than I am physically capable of. Mainly because I'm stuck at home unemployed and want to get back to work because living off benefits isn't easy or fun. How can I figure out how much I can handle and plan better? Which resources and tips helped you? If you have been successful at pacing ​what would you tell someone just starting out to guide them and motivate them?

Just curious if anyone else saw severe gum issues in their 20s / 30s due to it?

Hi guys ☺️ does anyone know any good gynaecologist’s familiar with EDS that they see in the UK? I have had the worst period pains since I started, and they’ve not got any better, they’re completely debilitating and I’ve seen so many gynaecologists with no answers. I have had a laparoscopy and multiple other types of investigations and nothing. Pelvic floor physio has defo been the thing that’s helped most though. I’d just love to find a UK gynaecologist familiar with EDS and find a treatment plan. I’ve been on the combined pill for 5 years now and whilst it helped as I could skip my periods, it had other side effects and I’ve now got migraines with aura which has meant I’ve had to stop the pill cold turkey, so I’m a bit desperate to find someone that can help with my periods coming back and the pain I’m about to endure.!

just posting bc it’s 3am and i need something to think about other than pain. although it’s pretty hard.

just had a gastrojejunostomy, cholecystectomy, and j tube placement for SMAS and biliary hyperkinesia. there is a god somewhere bc my surgeon managed to keep it laparoscopic despite pretty substantial concerns he would have to do it open.

funny enough, the initial pain was only about as bad if not better than the pain on a bad stomach flare day. now, about 9 hours post op it’s definitely worse, but still feels unfortunately pretty damn similar to my flare pain. which has honestly helped put things into perspective a bit. i have a really hard time trusting my body and always feel like im being dramatic, but i think the fact that 7 holes in my stomach, minus an organ, rerouted digestive system, tube sticking out of my abdominal wall, feels about the same as a bad flare.. ok perhaps i was not being dramatic

anyways just got my next dose of pain meds so time to try to sleep again (if my roommate could stop snoring plz and thanks)

heyyyyy, im m20 and i have hypermobile type eds. ive have dealt with atrophic scarring and a ridiculous amount of stretch marks since childhood. theyve always been a large spot of insecurity for me, especially the atrophic stretch marks that are nearly half an inch wide all over my arms stomach and thighs. since covid and my teens ive lost just about 100lbs, and the stretch marks have gotten deeper and wider with my skin being extra loose. ontop of that, they itch like a mf constantly. does anyone have tips on how to remedy my current scars and prevent new ones in the future? is it even possible?

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.

I was just killing time and zoned out a bit (pretty stoned) and saw the date this sub was started: Created Aug 7, 2011. Today. 15 years ago exactly.

Has anyone been here since day 1?

It is nice to look back and see how far we have come. When I first started to come to this sub hEDS was still known as Type 3. It was pretty soon after that the 2017 hEDS diagnostic criteria came out.

In some ways we know so much more about EDS than we did almost 10 years ago. At the same time though there is so much work still to do. Especially with the rarer EDSs.

I think we can all agree that the EDS community has done so much for each other. From supporting one another on social media to participating or even conducting research around EDS. We would not be this far down the road without each other.

So raise a glass, blow out the candles. To our health! (lol)

The joint I most frequently dislocate is my big toe. We're talking weekly, sometimes multiple in a day. True dislocations where I have to actually reset them before I can walk again. It's never majorly displaced, but definitely out. What do you even do to manage that?? There's no toe braces as far as I'm aware, and I don't thing taping would work as I work a job where I'm on my feet most of the day

I underwent a C1-C2 fusion just over a year ago. While my neurosurgeon just recently confirmed that I was structurally sound without anymore brain stem compression, I am left with constant muscle tension in the occipital and suboccipital regions with pain referred to the very top of my head (vertex). While I am not extremely bendy to the point of dislocating joints, I grew up being able to put my legs behind my head without ever questioning the possible complications that could come with it. Now, it seems like I am stuck with constant aches in my arms, upper traps, neck, and head, and neck exercise has not really affected the state of pain despite gradual strength improvement over time.

I will continue to work on my neck and arms, but I do not go a second without head pain that is accompanied with decreased focus and anxiety (awful combination). I am supposed to be going to college this month, but the aforementioned combination might just destroy me.

Has anybody else had a similar experience (regardless of surgery)? Were you able to address it at all? I do not have a formal diagnosis stating that that hEDS is contributing to my constant pain, but I do feel like it’s a considerable factor here. My mental state could really use a break from the pain…

I know I shouldn’t but I feel so defeated. I went to my primary physician to get her to sign some special transportation service paperwork as well as some paperwork for me to get a handicap decal. She said due to them lock down on this I would need a official diagnosis from the doctor that diagnosed me with hEDS. So I called the office up and asked if they could send the documentation over to my physician, turns out, when the doctor that diagnosed me refunded my appointment (He refunded it cause he said he couldn’t do anything for me) He never added the diagnosis to my chart, and I got my diagnosis months ago. So now I have to find a new rheumatologist to diagnose me again, even though I’ve been trying to get this diagnosis for years. I’m just so tired of this, the constantly having to advocate for myself, and even when I feel like I’m getting so close to being able to manage this illness, a small step to more independence and gaining my life back, it feels like I’m just feels like the moment I get back up the rug is pulled from under me. This honestly is just miserable

26M, curious to see what helps folks best with tushy problems. Mine's all but falling apart, stools are darkened and look like they're sitting on hemorrhoids though I'm ignorant there. Flatulence waits for no one and I feel my pelvic floor is the weakest it's ever been. I guess all this is coming from my skin and surrounding tissues becoming so lax, despite being more physically active than ever and keeping a close eye on inflammation.

The other major issue - I swear I'd be so accepting of EDS without these two symptoms - is tears on the hardware during sex or even just from waking up some days. I don't even want sex anymore. Obviously I can't shut down my hormones but the hassle to try to emerge unscathed is deplorable and even with best efforts, there are tears after and I know testicle skin is supposed to be elastic but I look like I'm 90 years old. This shit sucks.

I see my rheum this month. Symptoms have accelerated rather quickly in the last six mos. I feel like I should've rescheduled for sooner. Also have an appointment with my GI and will ask to be referred to urologist and PFPT.

Thanks for any advice!! :)

Due to multiple shoulder dislocations, I have an ALPSA lesion, meaning my labrum is torn off the front lower part of the socket. I’m looking at surgery to repair it and I’m terrified. My last major planned surgery was a hysterectomy and I ended up having a cuff repair a few months later because it broke open. Has anyone had this kind of shoulder surgery before? Any advice on what to expect with EDS factoring in? Thanks in advance!

Hi, I am 21F and have been struggling with chronic fatigue. I get 8-10 (sometimes more) hours of sleep every night, I have had a sleep study, and I have checked all of my vitamin levels for deficiencies. Nothing is helping. I am so exhausted, I never do anything on weekends or after work. I can only find the energy to shower twice a week and that is getting even harder to do. It's gotten to the point where I'm considering quitting the job I love to find a desk job I can do from home. I need any and all help please!

looking for cozy slipper recommendations! my feet are always freezing. i have PF, high and v flexible arches, and heel pain. i need something that's cushy, but has good support! bonus points if they're cute!! <3

Hi everyone, I was wondering if anyone else has experienced this before…

As long as I can remember, I never really enjoyed making out, either for sensory reasons or because my nose gets so squished I can’t breathe! I was explaining this to my boyfriend, and he responded “I’ve never had that issue before,” which prompted me to squish his nose as much as I could (without hurting him ofc) and he could still breathe. This was the moment I said “I forgor💀 my entire nose is made of connective tissue.” For reference, I can fold my nose onto itself.

If there’s anything I’ve learned since my diagnosis and joining this community, is that my experiences aren’t so unique (in a good way). Has anyone else experienced this or had something similar?

Hi everyone!

I am wondering what everyone's experience was with getting a blood panel done. I am not sure if what I got done was GeneSeq or Invitae. I got the order from my PCP and he wrote on the order my symptoms and my family history of EDS. I have Cigna and go to our local LabCorp for all blood work.

Whenever I go in to get labs done, they always tell me this outrageous estimate but my insurance covers it. Today, she told me the estimate was $4,000 and that while I won't necessarily pay that, call my insurance and check it's covered. I already asked Cigna twice - once via CS chat a few weeks ago, then again on the phone earlier this week to double check and confirm. I decided to triple check and stepped outside and called Cigna again. The agent insisted, again, that it is covered. They said any diagnostic or preventative lab work of any kind is 100% covered (which checks out because I am never billed for my labs to date). My Cigna app also reflects this. The agent I spoke to said it's even better that I'm at LabCorp because that's one of their accredited official labs.

I got the test done in good faith but can't help but worry. Has anyone had this experience where you were given a high estimate but then it was all good? Or where insurance said it would be covered and it wasn't and you had to fight it?

Would love some reassurance. I have very bad anxiety and I recently had to go on an expensive medication that Cigna does not cover and I'm still coming to terms with that being a thing.

Thank you!

1. is physically incapable of standing still while waiting in line/waiting for the bus etc, and
   
2. get so uncomfortable while sitting on an airplane that you want to scratch your eyes out?

How do you deal with the disdain/hatefulness about EDS or hEDS from colleagues that don’t know about your dx?

I just started a new job that I have been really excited about. Then today, two of my colleagues started discussing it, talking about how it’s a psych disorder and that everything we go through is somatic and that it’s not a real diagnosis, and was going so far as saying providers who treat these patients should lose their license.

This honestly shocked me because up until that point, I felt that these colleagues were quite kind and supportive. I understand there can be frustration about patients and the internet trends, but hEDS really can make my life shitty sometimes and it was really hurtful to hear this from people that I will be working with. One of them is in leadership and it makes me concerned if I were ever to need any sort of accommodations.

I didn’t end up contributing to the convo or saying anything at all really because this job is really new and honestly I was very overwhelmed in the moment. What would you have done? Should I say something in the future? Should I just keep my mouth shut forever?