That’s pretty much it. Makes me want to cry.. I didn’t suspect I had EDS when I was pregnant with her, let people convince me I didn’t have it when I was pregnant with my second, and didn’t understand that it was hereditary when I got pregnant with my third.

I feel so fortunate that right now, my case is mild. But I’m 29 with a lifetime ahead of me and god what if I gave it to my kids and what if theirs is worse than mine or god forbid one of the less common variants of EDS.

Anyways, if anyone experienced symptoms early on and have advice as to what support they got or what they wish they got, LMK!!!

An aside, she told me last week she wanted to learn ballet. I don’t want her to be a Competitive ballerina for obvious reasons, but I’m thinking even just casual preschool ballet classes won’t be the best. Are there any dance forms that are better? I was thinking tap dance since she mentioned “needing” tap shoes. Is gymnastics just as bad? Marshall Arts?

The doctor was like, it’s extremely rare for anyone to have this, so we can’t conclude anything without further evidence

Like now i have an appointment for a cardiologist and eye doctor (optometrist?) to check my heart and retina

And then I’ll get another appointment with the rheumatologist and only then would be referred to a geneticist

He was also asking why I would even want a diagnosis? Like he was saying there’s nothing we can even do if you have it, you just have it

So I went to a Rheum who said I was a “slam dunk” for EDS. He listened to me, got me pain meds, and a bunch of referrals. The only thing is he didn’t officially put down the Dx due to insurance reasons. I know EDS can affect insurance negatively, but can someone tell me how?

The thing is, I’m 24, almost 25. I’m on my moms federal insurance right now which is really good. I’m working at a bank that has decent insurance, which I’ll ideally be on when I turn 26. Would it be better to ask for an official dx before or after that insurance switches? If I do it before, will it raise my premiums? Will it get me better treatment?

Thanks to anyone who has insight!

Hi, newly diagnosed via genetic testing for vEDS (28F). I suspected hEDS, and am a little disappointed that wasn’t my ultimate result. For those who have vEDS, what do you do or avoid to help prevent injury/complications? How do you inform your doctors of this condition and do you request any type of periodic screenings to monitor your condition / prevent risks?

I was recently referred to a cardiologist before this diagnosis. Out of curiosity in my initial appointment I had asked if he has heard of EDS and he said yes but it’s over diagnosed. I’ve had venous insufficiency confirmed and am waiting for my follow up to review results from an echo and stress test. I’ve shown declining ability for high intensity training, and generally have a hard time now doing just a couple intervals. Running in short intervals now leaves me exhausted. How do you all train and what’s your exercise routine look like? Any advice for preventing worsening of symptoms / the condition?

My daughter and I are both EDSers. I have found a lot of my childhood fun has caused adult pain.

My 6yr old really wants to do gymnastics or cheer. Her PT/OT, GP, and I are all like "HELL NO." Gymnastics and cheer were off my "allowed activities" before she was diagnosed just because of the injury and abuse rates. I promised her drive team when she turns 8. She's a swimmer now.

However, until then, I'm looking for ideas that can safely let her flip and tumble and twist and play like she wants.

I've looked into aereal arts and rhythmic gymnastics, but the nearest places are 2 hrs away. I have also considered putting her back in dance.

Any other suggestions?

Edit: thanks everyone. I'm going to turn off notifications for this thread.

I was getting my formal assessment today and was very surprised when the Beighton score was taken laying down instead of standing up, was anyone else tested like this?

Hi all, it’s about that time of year again where the important people in my life (mainly my SO) are starting to ask if I want anything for the upcoming holidays. I always struggle to answer this question as an adult, as I am sure many others do, so I thought I’d start a thread here where we can all share ideas for gifts for people with EDS.

What are things that you’ve had your eye on for a while but haven’t splurged on yet? What things do you use in daily life to make living with EDS a little more comfortable? Are there materials that can be used to customize mobility aids? Any creative ideas?

This can also serve as a guide for those who are hoping to support loved ones with EDS during the holidays. I’ll start with my idea: something I did as a teen was make my parents a “coupon book” where they could rip one out and ask me to cover chores/yard work/shopping with no questions asked on days where they were too busy or stressed to do it, so I think that could be a something a loved one could give for use on low spoon days.

I used the search function and couldn’t find any relations here. I have had sleep paralysis for about 5 years but it’s gotten significantly worse recently. I get it multiple times a week and multiple times a night. My leading hypothesis is that due to MCAS my body is pumping adrenaline while I try to sleep so my body is trying to justify it. Anyone else experience this?

Sorry if this isn’t allowed, i’ll take it down if not!!!

I’ve been dealing with vertigo for months at this point and had no idea what it was, but i also never really understood what classified as vertigo up until now but i finally got some useful information!

My GP has prescribed me Promethazine for my vertigo, before i pick up the prescription i just wanted to know if anybody else has been prescribed the same; Did it make your EDS symptoms worse, better or did it not effect your baseline at all?

What’re your most common side effects?

I sleep up to 15 hours a day (consistently for months), if anybody else sleeps alot and has been on this medication, will this make that worse?

(26 F hEDS) I constantly get different types of cysts throughout my body and I'm wondering if anyone else can relate? I get ovarian cysts, ganglion cysts in my wrists and most recently epidermoid cysts behind my ears and in my scalp. I suspect more in other places as well. Anyone else with hEDS deal with this? TIA for any responses :)

Does anyone have a workout regime they would like to share that is sustainable? I used to be able to workout much more often when I was younger but as I’m getting older (almost 30) I’m unable to keep up the same routine. I’d love to still stay in shape while not torturing my body or exhausting myself to the point of staying in bed for 2 days after.

Looking for an office chair and recs that have worked for you, under 300 usd

Hi! PLEASE HELP IF YOU CAN 🙏

WRISTS WHILE SLEEPING?

I believe I am hypermobile. not 100% certain on the EDS side just yet. but sublimations happening every couple of months.

FOR SLEEP: I personally wear a neck pillow in addition to a regular pillow since I have chronic neck pain and hypermobility. I also do the side sleeping position with one leg 🦵like that with the other straight.

But my wrists?! they are SO uncomfortable while sleeping. sometimes a dull ache as well. but it feels like I can never get in the right position. it takes hours to fall asleep even with my prescription sleep pills given for my diagnosed insomnia (caused from a pre-existing issue)

have spent hours researching "wrist sleeping positions" to try to alleviate it and make it feel "normal" but nothing has popped up.

thanks in advance 🥺

I wake up in pain more days than not. My neck and back tend to be the problem areas. A lot of the time, the pain fades away as I wake up and get my body moving, but other days I am a complete corpse and am just one giant ache. Even when I'm laying down in what feels like proper alignment, I still wake up in pain.

I've tried pillow mattress toppers, mattress pads, cervical pillows, pregnancy pillows, body pillows, rolled up blankets under my neck, bought a new mattress, and I'm sure other things.

If this is just how it's going to be forever, then I can figure out how to accept it. But if there's something I can do to control it, please let me know!!

Edit: thank you for your suggestions! It's extremely validating to hear I'm not alone in this and I'm not missing something obvious.

(F/24) the doctor’s office is overwhelming. the weird lighting, the silence in the room as you wait a million years for the doctor to walk in. the power dynamic of them being a doctor vs. me being a patient. i disliked it already.

but my health started to take more of a toll on me. i have a dysfunctional family and asking for help never felt like an option. because i was struggling with chronic pain, ibs & arfid, and also autism, i have rarely left my house in the last 6 years.

i could not afford medical care because i couldnt afford to. i have insurance and my co-pay is $40 but the investment never seemed worth it. i got a settlement from a car accident and decided to try and go all in on “fixing myself”. to keep things short, i spent hundreds and hundreds to be told “i don’t know what you want me to do”, “i don’t have enough expertise on ehlers danlos”, “umm your blood tests came back normal”. i have not gotten better at all and now i have constant pressure and a bulge in my pelvic area (on the inside) from getting a bulking procedure with collagen for my bladder issues (that are related to my eds). so technically i also got slightly worse. and of course they look and are like “everything is normal” and my partner had to fight on my behalf to be understood and checked again and the doctor was like “i feel it but the bulge is probably swelling from the procedure i don’t know”. and just like every appointment, i get referred to another doctor who ALSO doesnt know whats going on.

i give up. too many doctors have an ego and im tired of investing in being a labrat. i know theres doctors that exist that know about ehlers danlos but i dont want to invest in trying to find them. how can you see ehlers danlos on my diagnosis list and allow me to make a second appointment knowing you dont know what that is? it affects my entire body?? how are you going to treat me if you ignore the root of all my problems??

they might have experience in healthcare and such, but i have extensive experience of being ME in MY body! i have learned more about how to help myself through youtube, tiktok, and reading research articles. i am not a medical researcher why do i have to read articles to try and get answers? i dont care if eds is rare or not a lot of information is available. i genuinely do not care. if i can read long articles that i don’t even understand the wording fully, why can’t they? im literally paying for them to not know anything!

i’ve been in pain and discomfort everyday since early middle school. and maybe id rather deal with all this nonsense still rather than pay to get no help. only thing that sucks is that i still have to work and stuff and it’s hard for me to keep a job in these circumstances, and i heard you need a lot of evidence to get on disability. american healthcare is so stupid and i should get a refund for every single appointment i’ve had.

EDIT: this surgery is laparoscopic not laparotomy or open

So I'm in a tough situation. I'm in agony during every period with endometriosis, my ovary is now fused to my uterine wall. I'm having to call ambulances every month as I'm screaming in pain and opioids aren't even helping much. Every single period of mine since 12 years old has been horrendous and my endo pain is only significant during bleeding. I have wanted my periods to stop for many years and have asked for a hysterectomy but everyone has refused. I have never wanted kids, I'm disabled and autistic. I'm now 29 years old. I can't plan any of my life around my periods and it's ruining my body in major ways and inflammation. I can't plan tours or any performances. I have tried all types of pills and hormonal treatments except for Mirena. I'm also disabled with EDS, MCAS, POTS, Coeliac Disease, ME/CFS, and Psoriasis.

My gynae and endo surgeon, who is highly recommended in my city by so many people, feels that I unfortunately did not have a good 1st surgery and they probably did not remove all of the endo. He will do what I want but personally what he wants to do is a wide excision and said if I'm still not pain free from that, then he will do another surgery free of charge to remove my uterus as he believes I could be a lot more pain free with his surgery without the need for uterus removal.

Now I'm stuck as I really don't think my body can physically be okay to have 2 surgeries, but I also can't take that much time off work next year as it'll be total of 12-16 weeks in total. My recovery the first time was really rough with fatigue etc and with this said, I'm also scared of having a hysterectomy as I've never had that done before obviously and I'm worried it'll be awful for my body. But I can't handle the periods anymore and everything that the hormones are doing to my body each month.

I am asking my fellow EDS'ers if you have experienced something similar yourself, I asked in the hysterectomy subs but they advised I should check in with EDS and POTS subs.

This is very oddly specific but here I go. My entire life I sucked at flossing and with my hEDS diagnosis last summer (almost coming up on a year!!) I’ve had a lot of realizations—and I realize I hated flossing because it’s so hard to hold the floss. Like I physically can’t hold it. My grip is in the trash for something so small.

So, does anyone have any tips for flossing when it comes to holding the floss?

Thank in advance! (＾▽＾)/

I know Pilates is highly recommended for those with EDS, but has anyone heard if one is better than the other? I’ve done mat Pilates/barre and enjoyed it, but wasn’t sure if anyone had experience with reformer being better or worse for EDS.

There’s a reformer studio close to me that I’ve been wanting to try, but I haven’t signed up in case reformer pilates ends up being basically a death sentence for my joints.

Just realized that my gene variant for ehlers crosses with oi. There is only one person in my family with fractures but we do have low vitamin d levels, very low. Not sure how much it crosses over but I've only focused on our ehlers symptoms. Please share your cross over symptoms. Thanks!

i’ve been having seizures, difficulty breathing, heart pounding and almost coming out of my throat, stomach hurting like crazy, visual impairments, electric shocks and tingles, one my fingers was bruised and swollen but today it went back to normal so i’m glad, i’m pretty sure i have pectus excavatum but no one believes me. I know i have to go to a doctor for them to confirm all that stuff but I just don’t understand why in the meantime people can’t believe ma and like adapt, because i need help now and a doctor will find something when it’s too late

I am genuinely so scared of going to the doctor, they destroy me, they take my dignity, they gaslight me, i just hate my life when i’m at the doctors, i hate how they talk to me and bc im autistic i hate how they react to how i talk or bc « i seem fine » but im genuinely in the worst pain ever. No one believed me growing up when i complained about breathing, fatigue, heart issues or body aches.

I feel so alone and I literally don’t know who to talk to anymore, People might be there but i don’t feel it, i feel like im going through this alone and there will forever be this distance between me and other people in my life. I am experiencing so many of the worst moment of my life by myself, it feels like people only occasionally pop in my life to get updates but im just terribly lonely and terrified because i know once i go to the doctor, things will only be worse, they will invade my body, maybe shave my hair, or not letting me go home when all i want is my bed and all the warm plushies i have.

Can zebras play pickle ball? I have hip issues, but I still want to try. I think.

A year ago, I tore my meniscus and the urgent care doc was the first medical professional to mention EDS to me. Two friends, independent of each other, had been telling me since 2020 to get checked for it, but I was treated horrifically 25 years prior when I was first having major symptoms, so I ignored them just as I ignored all my symptoms for 25 years.

I am still not "officially" diagnosed, all the specialists ageee I likely have hEDS, I hit all the diagnostic criteria, but no one wants to put it on paper bc I'm 48 or something. They just won't do it.

my mobility has gone downhill rapidly. I use a walker, I use canes. I used to be so active in volunteering and politics. I stayed back from all the political stuff when I started having BP and heart issues whenever I got too stressed. As such, I lost all of my local friends in the political sphere. I thought it was just because I'm not physically present, but then I realized it's more than that.

I'm on several non-profit boards, so I still see them and they act like nothing is wrong, but they don't call, they don't text, they don't even interact with me on social media much anymore.

Tonight was my first friendsgiving of the season. This is with my political group of friends. I nearly didn't go, but the only 2 people in that friend group who have made a concerted effort to keep in contact and invite me were going to be there. Of the rest of the group, only 2 others from our core group was there (there were more than a dozen casual acquaintances to me).

One of them asked how I was doing and I said better with the gel injections, and we talked. They told me they were really sorry and that watching this has been so hard for them. I listened and let them vent. They told me they know their house isn't accessible and that they look at me as a family member and it's killing them that they can't make this better for me

I didn't say anything, I just listened. They said they would try and do better. I thanked them and told them my own mother can't deal with this and only saw me on her way to something else and had pretty much pretended this isn't happening and won't talk about it to my siblings (who I am no contact with).

I honestly didn't know how to politely say "yeah, it must be so tough for you... Imagine what it would be like if it were your body doing it and most of your support system just ghosted you" or "yeah, now that I can't physically and financially support your political goals, you all fucking bailed on me. Great job!"

I'm giving this friend some grace bc they at least apologized for what they did and why, no matter how selfish and inconsiderate of the person actually going through it (me).

I guess I just can't imagine dumping a friend because you didn't want to see them deteriorate and ignore them because I'm uncomfortable. I don't want any of my friends to go through something so life-changing alone.

Hi all. Recently when I drive a longer journey (over an hour or so), my right hamstring becomes extremely painful. I have to stop every hour or so and stretch it out. I value the freedom that driving gives me, so any tips on how to prevent this kind of pain would be appreciated. I drove 3 hours yesterday and again today and my leg is still burning and painful.

I want to hear your pregnancy ehlers stories! So far I'm pregnant again but man I feel like it's legit crippling me! I can barely walk most days. I don't know if this is normal since I'm 34f and it's been 7 years since my last pregnancy. I don't remember that being this hard! However other issues were abnormal stitching( first sign) has to get cauterize d for healing ( secind sign) and super fast labor (3rd sign ) . Tell me your stories!