Hello!

I was diagnosed with hEDS at the end of November with the suspicion that I likely have pots, mcas and cervical cranial instability. I also have long covid.

I feel like hEDS makes so much sense for me and is so validating given my symptoms and experiences but I think I my score was miscalculated and maybe I don’t meet the criteria?

Criteria 1 I definitely have 9/9 beighton

Criteria 2 Feature A

Only 4 boxes are checked but I was given 5 points. Here were my positive features

• soft skin

-stretchy skin

• papules
• aracnydactyl I had both the thumb sign and wrist sign on both hands

My guess was my doctor calculated 1 point for walker sign and 1 point for thumb sign. However in my interpretation you can only earn 1 point even if you have both maybe I’m wrong.

Feature b:

No points - I suspect family members have it but no one has considered going to get diagnosed.

Feature C I meet criteria for chronic wide spread pain

Criteria 3

Meet all criteria for this section

What do you think?

Thanks for your help!

Hi,

I previously used Invitae to get testing done… I was able to get it without my doctor ordering it. One of their doctors approved the test based on some questions I answered and it was super smooth and I paid out of pocket. Now that they were bought by labcorp, I see that there is no longer the ability for patients to order testing directly. So are folks finding anyway to do this? I did whole genome sequencing and it took forever and cost a fortune and I found it pretty useless overall. Invitae was great but now basically not for the public it seems. Thanks for any tips.

Basically the title. I’ve been trying to avoid pushing into my end ranges of motion at the advice of my pt, but when I don’t I get so stiff and sore after a few days that I can’t resist stretching as far as I can just to feel everything crack like a glowstick. Anyone else feel this way?

Lately I've been having ezcema flare-ups, which led me to wonder how/why do some of us get Ezcema/Dry Skin (when we also have soft and velvety skin)? Surely that's a contradiction, as dry skin wouldn't be soft or velvety?

I've been having on and off mild ezcema flare-ups all my life. Lately it's been alot more frequent. Luckily mine are just itchy red patches/spots and mild skin cracking. But at the same time I've also gotten so many comments on how smooth/soft my skin is. So when I tell people I also have dry skin and ezcema they can be confused lol.

Does anyone here know(or have a rough idea) how/why some of us end up with ezcema despite having soft, smooth and velvety skin? Factual (links) or Anecdotal.

just got prescribed motegeity for gastroparisis associated with hEDS. just looking for general experiences taking it. thanks!

I have been experiencing gi issues on and off but they recently changed and got sm worse, and I’m curious what were your first symptoms, severity, anything x Context: I am seeing a dr, about it soon and am js curious

Has anyone tried going vegan to see if it helped? My MCASis triggered by eggs and nicotine, sometimes it is triggered by milk and chicken. While I react to other stuff too I am considering just going vegan because I react to so many meat and dairy products. Has anyone tried this? To be clear I probably wouldn’t be a strict vegan but still something I am thinking about.

(I really don’t care to hear recruitment speeches about veganism I am solely asking about symptom management.)

I got diagnosed with hEDS recently and I have always shown symptoms of POTS (extreme heat intolerance, dizziness, fast heart rate) but they’ve been manageable. since i got diagnosed with EDS, my POTS symptoms seemed to have absolutely taken a nosedive. the fatigue and brain fog is near debilitating and now EVERY TIME i stand up my hr jumps 30-50bpm and gets to like 170 in the shower. i can’t even do my physical therapy right bc my hr gets so high so quickly 😅 has anyone else been hit with POTS like a truck in their twenties or was it gradual/always there? i’m starting to think it’s all in my head since the more severe symptoms didn’t start until my recent EDS diagnosis a month ago

EDIT: it might be worthy to mention that 2024 was literally the most stressful and emotional year of my life so that may be a contributing factor

I had a breast augmentation done a year ago and noticed that my implants move quite a bit inside my breast. Apparently that’s not normal. Does anyone else have this issue with their implants? Any studies done on this?

I woke up to the screeching of my apartment’s steam radiators, and when I attempted to get out of bed to check if someone had left the heat on all night because it was boiling my tiny room with only one window, I was so dizzy that I fell over.

I am assuming it is the same sort of issue processing Steamy extreme heat that I have in the shower. So that’s fun. Exactly how I wanted to start my morning. Now I am sitting in front of my open window, playing with handfuls of snow from the sill, attempting to get my body back down to a normal range.

Anybody else run into things like this with their housemates where they do something that seems extremely normal, but that You’re zebra body hates?

The double purple seat cushion is the best seat cushion I have ever tried y'all. It keeps you cool and immediately forms to your body. It is so comfortable and fits in my wheelchair perfectly. I can tell this will especially be great in the summer time because it gets really hot sitting in my wheelchair.

I was able to try this out at a furniture place before buying it.

I was having this conversation with my gf the other night. I was telling her how I found it odd how quickly my doctor was able to get through the Beighton Scale with me. I didn’t really think my elbows or knees were noticeably hyper extended. However, after seeing my gf extend out her arms and legs I realized how much further mine went. I thought my arms and legs were what normal looked like. Suddenly, comments I got as a kid from coaches in cheer and twirling about keeping limbs straight made sense.

You know how little kids and super flexible people can sit on the back of their heels?

I need that for a chair. Not more support forward. I need to be able to sit back down into my seat if that makes sense. Like really far back. Like if you were to sit on the edge of a bed looking like you're almost falling off it.

I think the closest thing would be those stretchy web like chairs common for teen and college dorm rooms. But they don't support well.

As a kid I was constantly sitting off the edge of things backwards. Tipping my chair backwards. It makes sense now. It felt better on my joints.

I realize I sit so far forward normally because it provides more comfy joint pressure. It's basically the same thing I think, just centered different.

No wonder I hate working in my office. There's literally nowhere I can sit or stand that doesn't ache badly. There's nothing that exists to accommodate what I need in an office that I have found.

I love working from home because I can sit in odd positions on my bed

But the most comfortable place for me is driving my car. (I have a 5th gen Rav 4) There's something about the cushion of the seat and feel and maybe slight vibration of the car. I rarely have pain there. However I also get exhausted driving and gas is expensive so that sucks.

She is looking for a reliable kt brand that won't fail on her

i would love it if as little people could notice me at all. i experience a lot of pain and discomfort in parts of my body that are below my heart for longer than a minute or two because of what i’m assuming is shitty EDS circulation. i’m a lifeguard and i find it excruciating to stand, especially still, and even more so for extended time periods. if i don’t recirculate my blood enough i start getting extra fatigued and experience pre-syncopal symptoms that make it impossible to stay upright. i stretch while i scan the pool and i never take my eyes off the water while doing it. for the past year i have also been trying to fix my fucked up knees (from dislocating them every few months my whole childhood) and hips through a newish hobby of ballet, so sometimes i do heel raises or my feet move through some basic positions while i guard too.

my coworker just asked if i could stop stretching while i lifeguard because it looks like i’m trying to get attention. i move all parts of my body but i bet he said that right after i was doing hamstring stretches because he found it sexual. i’m not trying to sexualize myself or my body i’m just trying to be in less pain. i tried to tell him how much it hurts to stay still and not stretch but he just held his ground. i don’t know what to do because i really can’t work through the pain and symptoms when they are bad.

i was guarding alone so it’s not like i was trying to distract another guard and i really don’t have a better way to address my pain. please somebody suggest another solution

I’m a bit confused. I’m in the process of diagnosis. Two of my doctors suspected EDS since I seem to have every symptom in the book for hEDS. But my GeneDx report included two heterozygous variants in the TNXB gene. Isn’t that only associated with clEDS? Not sure where to turn now. Thanks for any input.

I have never been able to burp. It’s caused all kinds of symptoms like bloating and stomach pain, with these weird frog gurgles after eating. I was diagnosed with RCPD (retrograde cricopharyngeus dysfunction) which is literally the inability to burp. I got it treated with Botox and my stomach symptoms are completely gone now.

Has anyone else been diagnosed with this or is unable to burp? I didn’t know if it could be related to EDS, it’s still a relatively new condition.

I have to laugh at the fact that I am more than 10 years into my medical journey and no doctor or specialist has been able to help me.

It takes an average of 10-12 years to get an Ehler’s Danlos diagnosis

And it takes an average of 11-12 years to become a doctor.

I’ve been misdiagnosed, fed pills, trialed off label drugs, sent to a rehabilitation program, constantly at the hospital, struggled through a failed diagnostic surgery, and pushed to absolute breaking point multiple times by people who just won’t listen.

I’m fed up with being silenced and gaslit by medical professionals.

I cannot believe the negligence of the health system we live in.

If only we could receive the care we need when we so desperately ask for help.

I (19F) started experiencing chronic pain in my back, hips, knees, and ankles at 17. I went to my dr at 18 and basically checked everything off the Beighton Score. He sent me home with a referral to pt and a link to the hEDS diagnostic criteria. A lot of it was applicable to me, so last week I revisited the doctor to hopefully get that diagnostic process started. He said he believes I more than likely have hEDS but wouldn’t want to refer me to genetics because it’s not an important diagnosis. I left with a POTS diagnosis (without any POTS testing btw, so idek how that works) and a hypermobility syndrome diagnosis. He explained it as an umbrella term that encompasses hEDS and basically is hEDS but without going to genetics. However, I learned today that you don’t get diagnosed with hEDS through genetic testing.

So is hEDS an important thing to get specifically diagnosed or does my hypermobility syndrome diagnosis suffice?

it's the most comfortable position for me to curl up on the sofa, or perch on a bed or even sit in the floor, while sitting on one leg, but I have to be so careful because nearly every time I do this (in forgetting NOT to do it), I end up pushing some part of my knee out the socket, and I jump right back up again to get it in place again! it's very painful but thankfully it just pops back into place after a moment of out-stretching my leg again, the joint/tissue in that area can feel sort of bruisy and 'stretched', a bit loose afterwards if that makes sense. it can even happen laying my leg down the 'wrong' angle without even sitting on it, I'm more used to it now but it always gives me a fright!

I don't know if that whole thing of it feeling like it pops in and out of place painfully - counts as a 'subluxation' because it'll only be a temporary dislocation if it counts as one.

it's frustrating because it's SOOOO comfy to curl up like that, but I just know my knee can't take the pressure! (it could be worse - I'll live!) I also wondered if anyone related to compromising with the classic 'fetal position'.

What tests did you guys recieve that ended in your diagnosis Im not asking for advice , im simply asking what was your experiences in how you came to your diagnosis

Has anyone had experience with low dose naltrexone? I’ve discussed it briefly with my psych and now that I have an hEDS diagnosis it’s even more intriguing. Would love to hear some experiences, advice, etc.

Hi all! I’m wondering about people’s experience with getting a diagnosis.

I have dealt with subluxation and chronic pain for as long as I can remember. I also bruise terribly and my skin rips very easily. I am fatigued all the time, have issues with indigestion, and nearly daily headaches. I never connected any of these things until last summer when my massage therapist asked about my hyper mobility. I was like “what hyper mobility? I am not flexible at all.” And then she explained that my joints were very lose, but I’m not flexible because my muscles are so incredibly tense from holding myself together. Everything she was explaining started putting puzzle pieces together, and I decided it was time to actually try to figure out why I was in so much pain.

My GP, to her credit, isn’t ignoring my concerns. She immediately did bloodwork and looked for auto-immune stuff, and she ordered X-rays and ultrasounds of my most problematic joints. So far everything is negative/nothing abnormal. She’s sending me for physio next, and says if there is no improvement we will do more tests, but I don’t think she believed me when I said I was hypermobile because I didn’t seem it during her initial physical exam. And I guess it’s totally possible I’m not? I’m only basing that on what my RMT said, but I figure someone who works with bodies all day every day probably has an idea of what a normal joint feels like when it moves.

Anyway, I know hEDS is kind of a diagnosis of exclusion since there is no definitive test, so I’m wondering how long you all went through tests before your doctors decided that is what you have.

I feel like I’ve been deteriorating (idk a better word for it) so much this year it’s stupid. Some of my symptoms that were mild are like a lot worse and I’m miserable with it . Like the numbness . I’m used to that and my fingers locking for a few hours but like one of my toes has been numb for days and I don’t want that to become my normal . I’ve been so much sicker too , which is both good and bad . Bad for obvious reasons but kinda good for exposure therapy for my emetophobia ig 💀. I’m tryna look at the bright side . I’m just so tired of this . My hips too have been in so much pain and it’s getting difficult to do my major/job . And the fucking rashes bro why do I get allergic reactions to everything and anything ?? I hate having to rotate products just to try and avoid a reaction . It’s not even consistent . I have some guarantees but otherwise it’s just up in the air and I hate it . I hate the steroids too that my doctor prescribed for it . Ugh I’m just so mad about everything . I feel like my emotions are constantly cycling through anger , annoyance , and sadness . I just want to be who I used to be . No actually , I want to warn my younger self to make the most of it while I can . And to choose a career without a lot of physical labor💀 I know eventually I’ll come to terms with all of this but rn I’m just miserable and mad . My parents knew they both had fucked genetics , why they decided to have multiple kids I’ll never know . I was set up to fail from birth . Okay , I’m feeling better now that I got all that out 😭 I can’t rant like this to the people I know irl cause they just don’t get it . I’m glad a sub like this exists , makes me feel a lot less alone in this

Hi all, new here and looking for some advice. I’ve been hyper mobile all my life and have quite a bit of joint pain. I scored an 8/9 on the Beighton scale and I’m considering seeking a formal diagnosis. What are some other symptoms that I should be aware of?

Since taking a short course of omeprazole my silent acid reflux is now full blown ugh cannot enjoy food anymore fml

I have undiagnosed, but very much suspected Ehlers-Danlos syndrome. Where, to my knowledge, only my skin and joints are affected.

Anyways, I’ve always had trouble shaving and getting waxed because my skin is so delicate. I get ingrown and irritation.

And more delicate areas I have found that no matter what I do I just get so so so so irritated, and if I get waxed, I just basically expect to be an excruciating pain the next day (sometimes with shaving too).

I’m actually an esthetician (mostly doing work in facials), so I know what proper before and aftercare for waxing/shaving is like, but it still doesn’t cut it.

So if anyone has any tips on how to make shaving/waxing as comfortable as possible with this condition, please let me know!

i'm going to be moving soon and will finally have space for me to game at a desk, but i've never bought a desk chair before. i'm primarily bedridden so i need something very comfortable and big enough for me to move around and shift position in, but i don't even know where to begin looking. or honestly what i'm even looking for beyond "don't get a gaming chair". are there specific aspects i should be looking for? maybe brands that are better than others?

Not sure how many folks here have read the Fourth Wing series, but my dr and I talk about it all the time. We both had this moment when we first read the books and got to know Violet where we were like… wait a minute, that sounds like me/my patients!

Come to find out the author (ETA: author is Rebecca Yarros) and her kids have EDS and that it seems Violet does as well.

Would love to hear what other folks experiences have been reading about a character that is fighting a similar battle.

For me, I find it alternates between joy in being seen and the normalization of accomodations in a super popular text, amusement when I silently yell that Violet should drink some salt water when her (presumed) POTS is acting up, a boost of inspiration/energy when she accomplishes something great, sometimes just sadness that some of her achievements aren’t realistic for my health (with a grain of salt that of course I won’t be riding dragons anytime soon ;)), and honestly a touch of fear that some folks might read this and say “well she overcame her illness and does all of these things, why can’t you * insert daily life function I struggle with *”.

Also, please refrain from spoilers for folks who haven’t read but would like to :)

My gyn suggested I have prolapse surgery bc I’ve started to use a pessary and she said that at my age, having to use it for the rest of my life, surgery would be better quality of life.

Has anyone had pelvic prolapse repair? With or without rectocele repair?

If so, has it benefited you?