r/ehlersdanlos

i always thought these were just something everyone experienced but upon complaining about them online and getting numerous responses saying that this isnt actually very common and i just have bad nail health i now wonder if this is yet another eds thing. seeing as nails are connective tissue adjacent i guess.

like the little edge bit of your finger or toenail breaks off just the slightest, leaving a jagged edge that becomes infected and painful if you dont slice off the problematic edge. or your toenail just deciding out of nowhere that it would be a great idea to grow sideways. your fingernails being kinda flaky and being unable to grow them past a pretty short length. etc etc.

ive had to perform self nail surgery so many times over the years (yes i know how to properly disinfect things, yes i have tried going to an actual doctor, multiple times, it just comes back a year later no matter what they do and i dont have the money to keep doing that)

im 24f and was diagnosed with hEDS when i was 20. ive always had chronic pain and i only realized it wasnt normal when i was diagnosed lol. the pain has gotten worse throughout the years and now more than ever everyday tasks are exhausting and painful. how do you guys deal with this?

I've dealt with chronic constipation/digestive issues my entire life. The past few months I've taken to making a lot of meat & veg stews using bone-in beef or chicken, and I've realized that eating meat seems to greatly improve my GI function. My theory is the collagen and amino acids absorbed from the meat & bone broth jump start the digestive process temporarily.

The weird part is that so many sources say meat is *bad* for digestion, which conflicts greatly with my experience, so I'm wondering if this is something other hypermobile people experience as well?

So, although I am not new to hEDS and subluxations and even dislocations (mainly ankles and wrists), my shoulder has been giving me troubles for the past couple of weeks, it’s been constantly slipping in and out of place, like 20+ time a day. Yesterday was one of those days where I was breathing, not moving and it would pop out.
Around 1, I felt the worst pain my shoulder going down my arm, nothing like I usually feel. I tried pushing it back in, I couldn’t even move my arm. By a miracle I got a public clinic appointment 2h later (in canada, that’s almost impossible), she checked it, told me to go to the ER because she suspected it was dislocated. By the time the ER had done the xray, my arm was swollen red, completely numb, still couldn’t move. Xray showed a sublux, and the doctor just softly moved my arm anf pushed it back in. Sent me back home in a sling for 2 days max and told me to take advils. I also got a referal for orthopedics, but that will take weeks.
Since last night I’ve just had the worst pain, still can’t move my arm, burning, pins and needles, stabbing pain and an nsaid + voltaren hasn’t touched it. Eff I even took a percocet and it didn’t do anything. Now the next morning, still the same symptoms. Ice makes the pain 10 times worse
Is this normal for a dislocation? The last times I had them I was a kid so no recollection of any of it.
Tips? Tricks? What can I do?

Hello everyone, thank you for taking your time to read this. I will try to make this quick, I am trying to enlist in the military, but apparently someone diagnosed me with EDS, the only symptom I have is a little flexibility on one arm, I am pretty sure I've never been tested, I told my doctor and she sent a referral to genetics to get a test on another facility, so far all the facilities have told me they don't do tests for EDS. Is there any way to get a clear diagnosis? Whether it turns out negative or positive?

I did some research and the only option I've seen so far is an appointment with a doctor from the Ehler Danlos Society, ( the appointment is like $500 USD)

I need some advice please.

Basically, I am healthy and stuff. Meanwhile, my gf has to put up with all of the stuff you have to put up with with hEDS (subluxations and weak joints), POTS (flareups, getting tired, fatigue, etc) so she cannot get emplyed, drive, etc. She had to drop out of school at 15 and has slowly had the eds improve over the years since then (still bad and all).

Because of all of this, I just feel bad when I talk about stuff like school and walking long distances, knowing she cannot do all of this. I don't want to make her feel bad, so I usually just make it sound worse than it was so that they don't feel like she is missing out on anything good.

Now, I am having to plan to go to some university and all so that I can provide everything to us, and I just don't know how to tell her since I don't want her to feel bad for missing out on this.

Sorry if I sound like I am overcomplicating absolutely nothing, but I just feel sad talking to her about what I do in a day knowing she cannot do some of the things I do.

hi! (i know this is a relatively common topic of discussion here, but i was having a hard time finding detailed responses that weren't from those with minimally skin involved hEDS, so just not very helpful for me personally!)

i have very fragile, stretchy skin with significant atrophic scarring and deep stretch marks virtually everywhere, as well as some papyraceous scarring at a few sites. basically – my cutaneous wound healing and scarring is very bad, so i already have a very uneven, unpredictable canvas HAHA

i’d love any insights from people with similar skin characteristics as me when it comes to tattoos!

• are there any spots that have been uniquely difficult or easy to heal?

• has your overall skin response to things like cuts and injections been a good predictor for your tattoo healing?

• what was your healing timeline and tattoo characteristics (e.g. size, thickness of line work, density of shading, etc.)?

• did you do anything unusual in your aftercare to promote better healing and reduced scarring?

thanks a ton in advance :)

P.S. in any case, if i get tattooed for the first time to test out, i will be heavily researching the artist beforehand, doing it small and somewhere that's out of my sight, covered by clothes, and unlikely to get particularly bashed up LOL (so backs of upper arms or thighs likely)

I am trying to get things done but everything hurts so much, I've been using w33d to reduce the pain so I can keep doing things but Im sick of being high, but otherwise its too painful to focus on whatever I'm trying to do. I want to start PT but there's not a lot of options where I live and I have ass insurance. Rant over.

does anyone else do this?? whenever i do ANYTHING i immediately need to stretch. When i sit, stand, walk, lay down, anything. i just always feel like i need to stretch. I want to know if it has something to do with my hEDS or if its something else entirely.

I have been on Wegovy for over a year now and I’ve lost like 66lbs! One thing I noticed as soon as I started taking it was that my chronic joint pain from HEDS went away almost immediately. I was at like a 10% pain level instead of an 80 or 90%.

This past week I missed my dose because I was waiting for my med shipment to come, so I was 2wks without taking it, and my joint pain flared up SO bad. I was hobbling around and stiff as hell for the entire second week. I almost forgot how bad this used to be all the time. I feel grateful that this med has positively helped me in that way.

I wondered if anyone else has had similar experiences with their GLP1? I know some studies are coming out showing its impact on conditions caused/worsened by inflammation - maybe one day they’ll approve it for treatment of chronic joint pain!

Hi all! I’m looking to gain an understanding of flares from folks with hEDS. I am certain I have them, I just feel I am unaware of them or any potential warning signs?

Really the only thing I can point to are random periods of muscle spasms or intense muscle tightening/knots that are extremely painful.

For context if this is helpful: I am a high achiever in a very demanding field. I am also very into my personal fitness. As a result of all of these things, my entire life I have either wrote off my fatigue as stress or my physical pain stress-related tension. I have IBS-C and anxiety, I know my IBS flares with stress— but is that strictly that or a warning sign of hEDS flare? I feel so out of touch 🥺

It's always hard trying to plan for my future as I don't know what kinds of jobs are sustainable for me to keep and if I can build a career in it. My field is in landscape architecture which I freelance in along with graphic design and social media management but the freelance nature of it means sometimes my clients/boss ghosts me and I can't rely on them.

I also work as a pilates instructor but I can't quite increase my hours as I simply do not have the energy for it. Long periods of time at the computer tend to create energy crash outs and extreme soreness in the neck and shoulders. Has anyone else found a good balance to working with eds and what jobs have you found that help support your physical needs?

Hi all!

What accommodations have you requested or think would be helpful to manage your EDS/POTS in office? Im always in significantly more pain during my in-office days with some purple hands and stiffness to boot.

So, what are some helpful accommodations you've received or would like to receive? If you could mention why they'd be helpful, I'd appreciate it! Dream big and I'll let my HR tell me no lmfao.

Hi all, long-time suspected hEDS and formally diagnosed as of yesterday.

One of the things my wonderful specialist stressed is that pacing is going to be one of the most important things for me to think about day to day.

The issue is, I know that, and I'm terrible at it. So, I'm looking to invest in a wearable device that can act as a reminder for me. I've heard good things about the Oura ring but I'm open to any and all suggestions. I have an Apple Watch which is great for basic stats but I don't find it useful as a reminder to take it easy.

I'm also AuDHD which means that my internal hyperactivity is constantly battling with my intense fatigue, and as soon as I have a good day I want to do all the tasks I've been neglecting, and try and do fun things like actually leaving the house, which then sets me straight back into a flare. I also try to gaslight myself into thinking I'm not as bad as I am, with the same result.

I'm hoping some kind of device can act as a sensible third party, so if it says I'm under it and I need to rest, I'm more likely to do that. Recommendations much appreciated!

hi everyone,
i have been trying to rule out hEDS for some time and have hit a wall. referrals from different doctors for various specialists have all been denied for not going to the correct route but i don’t have clarity on what the correct route would be.
i was seen by a rheumatologist who did rule out autoimmunes that they would treat but nothing has happened from there, really. this doctor and my pcp say they do not know any resources for me. my healthcare group for insurance doesn’t not have any specialists or geneticists that work with EDS or hypermobility within their network. i keep just getting referred to the EDS website which also isn’t helpful. i don’t see anything outside of PT or massage therapy in los angeles, which seems insane to me. does anyone know of providers i could maybe try that would also accept insurances? how do people get screened/diagnosed?
i have a ton of medical trauma from other conditions and have had to fight for care and to be taken seriously many times. i’m hoping to find a solution sooner than later so i don’t have to go through this again.
thanks in advance♥️

Hey all
I am lately getting a lot of fatigue that I barely do anything any day.

I was curious why we get soo much fatigue. I don’t experience pain as such just fatigue and somewhat joint looseness.

So I cake back to all you zebras to understand why do we get soo much fatigue and how to manage it?

I have dysautonomia, EDS, and endometriosis. Honestly, I struggle with a lot of things in general, but lately this issue has become especially difficult, among others. A few days ago I completely stopped being able to urinate and had to be catheterized. This has happened to me before, years ago. I’ve always struggled to urinate properly, I go little by little, have to push/strain, or depend on certain positions, but I never really empty my bladder normally.

About a year ago (when we finally reached the dysautonomia diagnosis as many of you probably know, it can take forever because so many doctors lack information about these conditions), I had already started developing urinary issues. I’ve had episodes where I simply cannot urinate at all.

A year ago my neurologist told me I needed to get a urodynamic study done, but I was too scared and avoided it. I know that was a mistake, but the problem isn’t just the test itself, even when they try to catheterize me, it can take them hours because everything down there seems to completely close up, and they end up hurting me a lot. That fear made me avoid dealing with it until now, after another retention episode. They’re now scheduling the urodynamic study.

I would really like to hear your experiences. Do any of you also deal with urinary symptoms like this? My doctors have told me that dysautonomia and EDS can cause bladder and urinary tract dysfunction, but I honestly don’t know how far this could progress. Given how severe my health issues already are, I’m aware I could potentially end up needing a urostomy someday.

The worst part is that my intestines are also a huge problem. Thankfully I have a great gastroenterologist helping me with that. I suffer from horrible constipation, truly awful, A NIGHTMARE, and sometimes not even medication helps, but I’m getting off topic...

Could you please share your experiences with urinary problems? How do you live with it? Have you gotten answers about what part of the urinary system is malfunctioning? Have you found anything that helps? And even if you haven’t found solutions, I’d still really appreciate hearing from you. I feel very alone and hopeless right now.

Also, if any of you have had a urodynamic study done, I would be extremely grateful if you could tell me about your experience with it.

Living with this is so difficult. Thank you for reading.

For those diagnosed late in life, how do you reconcile that no one noticed your illness as a child?

My parents, who do not have these conditions, dismissed my chronic pain, inability to run, bleeding fatigue and frequent dislocations as laziness or complaining. I thought everyone had pain. As an adult is discovered I have Ehlers-Danlos Syndrome (VEDS) and serious vascular issues, including a 10cm vascular tumor on my neck that was previously dismissed as a birthmark all my life.

How do you heal from this as an adult?

I currently wear knee supports when my knees are especially bad, and thinking of starting to wear compression socks when I'm at work

Can I wear both at the same time? The socks go up to below the knee

Does anyone have some shoulder friendly workout vids or even just some good exercises I can do at home? I just had surgery on my shoulder 4 weeks ago so just doing PT for that, but I can’t be doing like push ups or anything rough on the joint obviously. I don’t normally work out, at least not like in that way. Usually just walking, but I finally have the space to do some workouts at home. I really want to strengthen my core, my back and hips, my leg and knee muscles etc to hopefully reduce my joint pain and I’d like to start now and not in 3 months when I’m cleared by my surgeon lol

I’m really open to whatever as this is pretty new for me. I’d like to avoid the gym if I can, I get anxious working out in front of people and just end up not going. Can buy small workout equipment if needed like weights and such. Thanks!!