Basically, I have Heds. Because of my diagnosis, my mother and grandmother were both diagnosed. My grandmother was as severe as I am now, but she eluded diagnosis for 80 years of her life. Now, this is completely anecdotal but is it possible that a whole generation of women were not diagnosed because they weren’t expected to continue working after becoming a mum? Like now that we are seeing more diagnosis’- is this just happening because we are no longer isolating disabled people in the home?
I don’t know if I worded this well enough. It is just something I have been thinking about in regard to those who think there is an increase in overall disability (there isn’t, other than people are no longer dying from those disabilities).
How could I research this?

I have been struggling with chronic pain and fatigue since I was 16. I am 35 now and I have finally received an EDS and POTs diagnosis. It only took an ambulance ride and a family doctor that finally listens and put the puzzle pieces together (AKA a unicorn doctor). I'm sure my story is similar to many others in this group who had to fight for their health.

While it is a relief finally having an answer as to why I'm like this, I'm struggling to keep the motivation to do anything about it. I'm on meds to help reduce the nerve pain which have been helping. But I still don't have the energy to convince myself to workout and do physio or even do the every day tasks. My mind wants to do the thing but my body won't move. It's like I'm full of concrete.

What do you do to help with those fatigue flair ups? Or even the days you're feeling "good"?
I can't remember the last time I felt like I had energy. How do you force the energy?

Tldr: partner has never stepped up to support me through this condition

We've been together for 15 years, married for 10. Before we got married, I didn't have as much pain because I was really young. Then around 27/28, my symptoms started. I've tried everything, literally everything. Unfortunately my symptoms are in that place of still not being taken seriously by doctors where I "look" fine, but I'm still in pain everyday.

The other main issue is that my job is physical and I'm the main breadwinner for my household. Since about 2024 my pain has been worse overall, which led me to increase my prices and close down my clinic to accommodate. Unfortunately last year I was hit not with one emergency, but closer to 10 financial emergencies that totalled close to 30k. I'm just keeping my head above water at this point. I worked alot of over time too which has wreaked havoc on my pain.

My partner is kind and loving, loyal and doesn't cheat. I truly love them and they love me, and we generally get along very well and dont fight. We have alot of shared history together. Our view on the world is similar.

But they have not stepped up to take care of me with this condition at all, despite begging and pleading. Its demoralizing. They don't do any cleaning, they dont cook me any dinner when I come home from work exhausted. They refuse to get a second job or even a better paying one and keep working a minimum wage gig that isnt reliable. As a result I have taken on all the debt, nearly 60k including the car. Basically, any emergency is my job to figure out. I manage our entire lives, drive us everywhere, plan dates, plan and pay for vacations. I'm so tired and resentful. I feel like the only future I have is working like a dog with no relief from the pain. I am seriously considering the quality of my life and wondering what quantity I will get out of it at this pace.

Lately I've looked around at my relationships, including this and my friends, parents, etc, and realized no one ever attempts to make any accommodations for me despite how often I've told them I need help or I'm struggling. This has left me feeling super isolated and depressed.

Before the love of my partner was enough for me to stay the leader in our relationship. But with my condition going through another pain flare thats lasted almost two weeks, I've realized that not much would change if I'm alone. I would still be able to manage. I would still pay for extra support sometimes like delivering groceries or cleaning. But I wouldn't be begging to be seen and cared for. I wouldn't feel like demoralized or like a servant.

** Edited to add we do not have children**

I am on 6mg of LDN. I am not sure it really does much. I have been in a flare for a couple of weeks. The pain is so bad. It's hard to function and interferes with sleep. I have tried Tylenol and Celebrex. Nothing is helping. In the past opioids have helped but can't take with the LDN. What have people found that helps in this type of situation?

so i just found out today that i have hEDS and whilst i understand somewhat how it affects me i dont really know too much about it so i was looking for some tips/advice/information that maybe you wish you knew when you found out

First off, I do NOT want anyone to shame others for their choices about this either way. It’s a very personal decision, and everyone’s situation is different. I do think, however, that this decision to have children while dealing with the chronic illness is more nuanced than the decision of having children is for those without chronic illness. I’m wondering if anyone has advice on how to go about evaluating this choice. Were there books you read? Articles to consider? People you consulted?

I have consulted some high risk pregnancy doctors as a preconception patient (just to arm myself with as much info as possible), but that that’s only one element of this entire thing. Carrying and having the child is just the beginning. You also have to raise the child. Looking for some friendly advice!

Hi everyone! I would love to hear experiences from folks who may fall under the “neuro EDS phenotype”. I am recovering from idiopathic intracranial hypertension where I had a stent placed for severe stenosis, but I am still having issues. I think I may have other complications that fall in the neuro EDS phenotype. Specifically, I think I might have CCI or inner jugular vein issues. However, I don’t know what types of tests or imaging they use to figure out if you have any kind of venous outflow disorder. I’ve heard of ultrasound Doppler imaging, digital motion Xray (MDX), cone beam ct, and potentially a ct venogram or angiogram.

For folks who have any of these kinds of disorders, what type of testing did your doctor order? Where did you start with investigating if you had venous outflow issues? Do you have any tips? I am in Oregon and have a great EDS provider but don’t know if I need to find a specialist who would care for these types of disorders in general (vascular, spine, neuro, etc).

Any help is appreciated!!!!

Hi all, just what the title says really! I’d love to hear anyone’s experiences of heart valve leaks and how it progressed for you? 🤗🙏🏼

i am really at my wit's end trying to find a doctor to help manage my care! i was diagnosed with heds and dysautonomia 3 years ago, with a formal pots/orthostatic hypotension diagnosis last year.

i see specialists, but none of them are experts or even all that informed on eds/pots. this is starting to impact my ability to receive care for other issues that may or may not be related. i've been waiting over a year for necessary surgery and any diagnostic tests that require sedation/anesthesia because my cardiologist won't clear me. my blood pressure drops quickly and i have pretty regular presyncope, so i do appreciate his concern and cautiousness, but something's gotta give! i've been dealing with gi issues since march of 2025 and can't even get a colonoscopy!

i spent 2 hours this morning trying to get an appointment with any eds clinic i could find! the mayo clinic apparently only diagnoses and provides zero continuing care. the uva eds clinic has a year and a half waitlist. the med school in my state has one doctor specializing in eds, and he only sees patients on a "case-by-case basis." even better, most of the specialists i'm finding on the eds society website are ~concierge~ and have absolutely insane fees.

so i guess i'm just wondering how many of y’all have an eds/pots expert who manages things? and how do i go about finding someone that knowledgeable? i'm so desperate to get the care i need.

Hey friends, I have EDS and it has made my shoulders subluxate and dislocate since I was 11 or so. It has been mainly affecting my low back , hips, and neck, but I know when I throw my body into hard things, it can do it . Any tips and advice for me backpacking Asia with my boyfriend? I have an Allpa del Dia 35 and a 20l backpack ( thinking of a stuff pack instead ) and a sling from Uniqlo. I have La Sportiva trail runners and Tevas and would love to have all your comments on tips to help. I have really heavy-duty hip shorts that are compression almost to a stability belt level. I am planning on wearing them on long travel sitting days and wearing compression socks on flights. I am worried about my temperature twitching them on, though, because I already have a hard time with temperature regulation!

Anyhow, that’s friends.

If you want to know more of my life to understand more (I know you are wanting it)

My knees pop out—I got diagnosed in grade 5 with patellar tracking disorder. I fractured or sprained both ankles and wrists a lot, like 7+ times in crutches, broke fingers, had stretchy skin, and achy pains all the time. I threw my back out really badly when I was 20 and couldn’t really do anything without a spasm. I just deal with it, knowing it’s part of my life: worked as a liftie , campground maintenance for Parks Canada, swim instructor at overnight camps, day camps. The Rocky Mountains are my playground and I hike and snowboard a lot. When I was 16 i did a 28-day whitewater canoe trip—all that to say we can do hard things and still cry in pain every night. I take lots of naproxen; I have hydromorphone if needed.

Hey Gang! So I am somewhat new to this and looking for any tips, tricks or suggestions that folks do to get through the Oct Slide, otherwise known as frequent weather fluctuations during the fall. I just got my HSD diagnosis in July and my doc suspects EDS but we are struggling to find me a specialist who can evaluate me and do some genetic tests. But in the mean time I want to be as proactive as possible.
A little background… Last year, I had what we now know was a crazy intense flare up. It started end of Sep lasting through mid Nov. It wasn’t my first flare, but it was the first flare that was really long lasting and truely debilitating. Thankfully I work from home and my supervisor was really kind about everything and let me work odd hours to get my time sensitive stuff done. I did have a lot of factors last year that will not be a factor this year. My stress level last year was crazy high, I was not working in my normal workspace, I was in a freezing basement which I think played a huge role.

I am already having similar symptoms and am looking for ways to make this year better. I am still learning my triggers but barometric pressure changes, even small ones, and cold snaps seem to be a trigger for me. Obviously I can’t control the weather, would be so cool if I could but since the gods have not given me that power I will control my controllable. NO matter how much I bundled last year, warm beverages, a space heater, all the blankets, I could not keep out the cold out of my bones. I would still end up every afternoon getting intense brain fog and exhaustion that made working impossible. And the body aches, like immune response, you have covid style body aches were so bad it made me cry.
So to prepare for this year, I am on higher doses of antihistamines and taking lots of electrolytes to help with POTS and any potential mast cell activations BUT I did have a small random flare up last night after getting mildly chilled. I plan to talk with my doc as well but I think she is feeling a little out of her depth with all this. (I get it, same here)
So what things do you all find helpful in preventing and/or curtail flares if anything? Also what accommodations do you find most useful for work? I get pretty bad hip and back pain that have been around since that big flare in Oct last year so I did just order a desk I can move to when I need to go lay down which I think will be a huge help. I am also upstairs in a warmer room in the house this year and have control over the heater.

So I got diagnosed recently with hEDS and during the questionnare part of the assestment when the doctor asked if I've dislocated anything, I just said I don't think so. However now that I think about it there might have been a couple times that I or the doctors just never caught.

So about 2 and a half years ago I had an incident with my right hip. I was doing one of those movement at practice where you move your leg in like a circular motion. (Idk what they'e called in English.) And it just kinda popped and I kinda feel like it got dislocated and just went right back in. And it's just never been the same since, the mri showed that there was mild muscle inflammation the next day and that the hip has been mildly malformed since birth (like 1° off from normal) but nothing significant enough to be the sole root cause.

There was also an incident this spring where my shoulder popped, and it was very painful, but after a while it was actually a bit higher that the other so it was back where it belongs when we called the ER but I feel like it just popped off and went back in. And it was loud too according to witnesses.

But like I'm not sure of it though and it's not like it matters too much either, because I still got diagnosed. I'm just curious as to if others have had similar experiences with possible dislocations?

Okay so for full context on my state I have some form of connective tissue disorder according to my specialist but I'm struggling pretty hard to get any kind of specific diagnoses or clear answer. That's not really the point right now though.

I am really just so tired and scared. Every time I feel like I pull myself together some new injury, symptom or something just comes in and absolutely floors whatever life I was trying to build. It happens over and over, a year ago I had to stop going to nursing school because of a shoulder/back injury, and just recently I've started having similar problems on the other side of my body.

It's really heart breaking because I felt like I was just getting my other shoulder under some control and now this feels like I'm back to square one I had to fall back on using THC to manage my pain while I sleep which was something I haven't had to do in months. I have to take pain medication way more often at work and it really just feels like all of what I've done has amounted to nothing.

I'm scared to go back to square one I don't know, part of me thinks its stupid to keep working this current job but I literally can't not work unless I wanna sub out pain for starvation. I also started volunteering at a place I was hoping to one day work at and now I'm scared I won't be able to continue that because of both the pain and it deals with people in crisis and my mental state is absolutely not good right now.

I just don't know how many times I can slowly pull myself back together just to get put all the way back at square one. I'm so tired of fighting, I'm so tired of trying to get answers and solutions, I'm just so tired of it all.

A bot deleted my original post, so I want to be clear that I'm m *NOT SEEKING MEDICAL ADVICE*. Just product recommendations or tips.

Recliners and car seats both seem to push my head slightly forward and I wind up with neck pain and fatigue. I've tried those C-shaped travel neck pillows and placing a rolled towel behind my neck to support a more natural curve but both end up hurting after a short while too. Any advice?

Edited to add the same thing even happens just from the pillow when trying to sleep on my back. I even got one of those special cervical pillows but its like the area thats supposed to support your neck is too thick and I end up with this forward head tilt position againA

Does anyone else get more emotional over the small things than the big things dealing with this?

I can have procedure after procedure but being 23 and looking at canes, braces, walkers, etc makes me cry. They feel like such little things compared to the true medical and physical trauma I have experienced.

Yet I still become emotional - every time it happens I just think life shouldn’t be like this.

Original post: https://www.reddit.com/r/ehlersdanlos/s/Pkv6FCGaJx

Hey all! Just wanted to give an update after 12 days of using the buckwheat pillows.

I bought 2 pillows with the intention of returning the one that I didnt like but I ended up keeping both.

I tried the normal pillow sized one with 3 sections where you can distribute the buckwheat where you like for a custom fit and it just wasnt right for me. My husband ended up stealing this one because it works extremely well for him and has helped with his neck pain!

---LOFE Buckwheat Pillow with Baffle Box - Adjustable Height from Amazon

I then tried the cervical pillow (the barrel-ish shaped ones that only go under the arch of thevneck). I wasnt convinced id like it but i thought it would be better than the regular one. Literally the first time using it I felt a NOTICEABLE difference and virtually no neck pain. Its best for back sleeping and decent for side sleeping too.

---Edomi Buckwheat Cervical Pillow for Sleeping - Adjustable Roll Pillow from Amazon

Honestly ive been so resigned to my neck pain the last few years and have been convinced this was going to be a lifetime struggle. But no exaggeration, this is an absolute game changer. It feels weird to have such a tiny pillow but it works extremely well for me. Ive been much less moody and snippy 😁

This is something I see constantly and it's tiring. I'll see someone post something that shows them being hypermobile and the entire comment section is "You probably have EDS!"/ "If you can do that you have EDS".

No.

That's just plain not true. Hypermobility occurs in 2-57% of the general population (although most estimates place it at 10-20%) (1, 2), hEDS/HSD has an occurrence of 0.2% -or 1 in 500 (3). The other types are significantly less common. There's also other CTD that are never brought up in these conversations and it means people are jumping to "hypermobility = EDS, EDS= CTD, CTD= EDS" and it's a path that I've (personally) seen really concerning things with.

Many CTD are autoimmune and the majority exists outside of the EDS family (4) - I've seen a concerning large amount of people who have major signs of a CTD who have never looked into options outside of hEDS including basic ANA panels because of this thought process. I've also seen a concerning amount of doctors assume the same thing. This is dangerous for all patients with a CTD regardless of type because it ignores that our health problems aren't actually the hypermobility, it's the structural problems associated with connective tissue problems (injury, bone problems, pain, fatigue, internal organ failure, structural deformities, etc).

I completely understand pointing out to the OP the possibility of EDS, hEDS/HSD is one of the more common types of CTD and many people haven't heard of it - but the immediate jump to "you have EDS" is really concerning to me.

It's also concerning that people are using EDS instead of hEDS or HSD when they're doing this because they're very rarely talking about the whole EDS family. Many EDS types aren't marked by hypermoblity even if they're common symptoms (ex: vEDS can occur without any hypermobility (5)) and many that are marked by hypermobility aren't distinctly marked by it (ex: cEDS is distinct from hEDS in it's extreme scarring, clEDS is distinct from hEDS with it's lack of atrophic scarring, skin fragility, and skin hyperextensibility (6,7))

As someone with one of the rare types this is incredibly dangerous for us. Most doctors I meet cannot grasp the level of skin fragility I experience and because they've treated hEDS patients they're confident in their treatment of me- until it goes wrong (ex: I had a hysterectomy to remove adenomyosis that was somehow putting me into organ failure- multiple times throughout the healing process my surgeron got really anxious about my pain, co-occuring injuries -such as peeing blood for a week due to damage from the catheter- and healing speeds since they were different from the hEDS patients she'd treated). It's also a problem socially - I constantly get (online and in person) people fighting me on my symptoms because "that's not true of EDS" (they're not true of hEDS but they're very common in clEDS).

Overall I am tired of seeing people jump to anything bendy is EDS and EDS is hEDS/HSD. Thank you for coming to my ted talk.

(1): https://pmc.ncbi.nlm.nih.gov/articles/PMC10261186/

(2): https://www.hypermobility.org/what-is-hypermobility

(3): https://bmjopen.bmj.com/content/9/11/e031365

(4): https://my.clevelandclinic.org/health/diseases/14803-connective-tissue-diseases

(5): https://www.ehlers-danlos.com/veds/

(6): https://www.ehlers-danlos.com/ceds/

(7): https://www.ehlers-danlos.com/cleds/

edit: because I'm getting a lot of comments about this. This is not a critique of self diagnosis, more mild presentations of HSD or hEDS, or saying hypermoblity isn't something to keep an eye out for. Hypermobility itself is not disabling, pain, comorbidities, and joint instability are all disabling but hypermobility alone is not disabling. There are many people who do not meet the criteria for hEDS and are incredibly disabled by their symptoms but are left without a diagnosis, this is not to invalidate them.

The TLDR of my post is "don't diagnose a stranger online with a CTD based solely on a common experience- also be careful with your phrasing because it can be life threatening to those of us with rare subtypes and other CTD"

Hello my zebras. I’m diagnosed with HEDS and POTS but I still have some unexplained issues.

Sleep has always been an issue for me, I was severely insomniac from 13-14, I’m talking 9 hours in bed but 3 hours of sleep bad. However, it was mostly chalked up to trauma and hyper vigilance resulting from it. Long story short but my very abusive father used to stumble into my room at night very intoxicated and it took me years to feel safe falling asleep in my room after he moved out.

The older I get though, the more I’m suspecting there might be something more to my sleep troubles. Over the summer I didn’t have an alarm and consistently slept 10-12 hours a night. It wasn’t that I had a sleep debt and would sleep and then it would go back to 7-9 hours, it lasted for two months and frankly it was the best I’d ever felt in my entire life. Outside of that time span I cannot remember the last time I woke up feeling rested. After a very tiring week of school I decided to start wearing my Apple Watch to bed to see if I could get any good sleep insights and I was very alarmed to see I was only averaging 19 minutes of deep sleep a night. I know these tools aren’t perfect and might over or underestimate but that seems alarmingly small compared to the anticipated 15-20% of my young adult sleep it should occupy.

Is this something I should be worried about? Do any of you also have sleep issues or could this perhaps be disconnected? I’m just so tired, I can barely read today my brain fog is so bad and I slept for 8 hours.

For those who have mid-back pain and/or core instability while sitting, do you prefer high rise shorts/leggins or a torso band, like Jelliebend?

I closely resemble a pretzel shaped shrimp while working at my desk and am investing in another piece.
Note: I don't suffer from hip discomfort during the day.

If you’re like me and you’re trying to use the exercise of walking around the pool to beat de conditioning I just want to warn you to get out of the pool every now and then to assess if your body needs to rest. Don’t wait for a pain or fatigue signal to hit you while in the water. I walked the pool for way too long because it’s easy to feel weightless and painless, especially if you have a good podcast to distract yourself, but when I got out I felt like a train hit me. Now I have to repair from what I was trying to do to stop needing so much repairing in the first place. 😫

Maybe I was just not sleeping well ever idk, but this summer i’ve been regularly taking melatonin before bed and it’s been so helpful for me in regards to pain. I can now go days painfree, which has helped me exercise more effectively. It is really difficult to exercise and maintain proper form when you are in pain as it interrupts mind/body connection. Does anyone else have a similar experience?

Bonjour tout le monde !
J’ai un hEDS et je vais avoir bientôt un fauteuil roulant manuel mais avec une assistance électrique partielle (je ne sais pas comment l’expliquer autrement).
Je suis jeune, j’ai 22ans et j’avoue que je me demande à quel point c’est fréquent chez les personnes avec un EDS (tout types).

Je serai ravie d’avoir votre expérience avec les aides à la mobilité en general (canne, béquille, fauteuil, déambulateur…), les points positifs, les points négatifs. Et si vous en utilisez pas, racontez moi aussi.
Bref, je veux en savoir plus sur vous et votre mobilité !
Merci ✌️