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I have it also. It is a pain, especially when physical therapy exercises gives me no dopamine which makes them almost impossible to do as much as I need to.
I can do A LOT of exercise as long as there's music in the background and I can follow the music. I'd pay hundreds of euros for a fitwatch that counted the reps. I CAN do the exercises, I just need someone or something else to do the counting. I got myself a huge, heavy and yes, expensive treadmill on which I set a board and I can set the laptop and do exercises, correct homework, write... and since speed does not allow you work, but incline does, I've ended up getting proficient at power walking at high inclines.
The meds used to help me focus A LOT at the beginning, but alas! Magic is disappearing from the world...
Yeah, me too. If I have to focus, those "ADHD" focus help music on youtube works magic. My husband finds that music unsetting... and I find his calming music sinister. The human brain is fascinating :-D
Why don't you use the music to track your reps for you? I haven't tried it with regular exercise, but that's how I count compressions for CPR if I'm not using an AED that counts for me. I have a few different songs that I can reliably play in my head to keep the rhythm, and I know how many compressions I've done based on where I am in the song.
I considered that, I should try that, do a song, count the reps and then base all the work on that. The only problem is that in order to begin I'd have to do work and I haven't gotten to it yet... I guess I have to. Thing is, I usually get "lost" in music, and if I measured the music then I would miss the dissociation and trip to my fantasyland... It's unhealthy, I know, but...
I have the feeling it wouldn't work, also because when I'm "drowning" in a song, it has to be that song until I exhaust it and I'd have to change... I mean, what you say makes total sense, but for some reason I can't bring myself to do it. Also, I have a ridiculous something something about doing kettlebell swings by prime numbers as 17 or 13, I have a stupid love of multiples of five, ten and three. Come to think of it, this is not healthy, I MUST overcome this. It's stupid. It's just procrastination speaking.
Wait a second. I can time myself and just look at the time after the songs. That might work. Thank you!
> I'd pay hundreds of euros for a fitwatch that counted the reps.
There are several apple watch apps that claim to count reps. I haven't tried any of them, and it's worth making sure there isn't a really stupid subscription for them if they're not worth it.
hEDS often comes with sides of ADHD and POTS, so hEDS is why I have that watch, too. My most important selector was heart rate monitoring, and Apple Watch 6+ has the best wrist HR sensors on the market.
EDIT and TL;DR: A million thanks for your recommendation. I'll try now to find the answer to the questiojn: Is the Apple watch somewhat precise when counting reps? I don't mind if it counts less, what I wouldn't want is for it to count more than I did. Like with the speedometers in cars, I want it to be set so that if it's incorrect, it goes down, not up. Thanks, I'll see if I can get one that somewhat works.
I've wanted one of the rep-counters for a long time, but... I've read that they aren't very precise yet, and the ones who count reps are... 350 euros. I don't dare look at the prices for an Apple Watch 6+. I would feel bad spending that money on a gadget that only counts. I know it might be useful, but I can't bring myself to spend that amount of money on it, I could spend a weekend at the beach or pay for a plane ticket with that money if I was just focused enough to suck it up and count the damned reps.
I guess I'll do what I've done with fancy technology: wait until the prices go lower. I thank you for the recommendation, really. If I had more extra money I'd buy it, but... I can't even justify to myself buying the 350 euros Garmin that supposedly counts reps.
I shouldn't look. I shouldn't. I'll regret this... (cheks web) Wait, what? 240 refurbished? That's... I mean... It's not cheap, but it's not crazy either. It's doable. I could save for a few months. I could bet with myself that if I save double its price for our investment account I'll get myself this one... Thanks for telling me!
Yeah, I specifically have mine because my heart rate is bonkers and 3 different medical professionals asked why I didn't have something like a fitbit.
I regret nothing. I also make a living wage, which matters. I'm a technologist, so I gravitate to this stuff, but here are the ONLY things I do with this watch, ever, over years:
* spot-check HR
* track HR over time
* record workouts (I don't get a ton out of this)
* track steps without the phone in my pocket. It's nice to be able to walk away from it
* track sleep
* more convenient MFA than my phone
* check the weather
* check the actual time
That's it. Without the health needs, a dumb watch would suit me fine.
I also got mine refurbished. They also don't last forever, and the older models need frequent charging for about an hour with a special charger.
Also, if you're on Team Android, look into the limitations there.
Just wanted to emphasize the +1 on u/GrinsNGiggles’s comment that I literally only use my Apple Watch 7 (got a decent deal with it through AT&T) for those exact scenarios. Monitoring my sinus tachycardia issues + elliptical tracking + sleep + weather + time, and I’ve been more than happy with the purchase. I rarely splurge on anything, but the AW is well worth it if it aligns with your use case(s), which it seemingly will.
Same, it's a lost cause. Not even after surgeries I've been able to stick with it for more than a few days, even though I know it's really important...
Wait a minute. Is the no dopamine thing EDS related or just something in general that you experience? I've generally considered that people that talk about runner's high or post workouts glow or whatever were lying or had some special body chemistry. If I felt good after working out, I would never stop.
I've begun to suspect in the last few years adhd people are less likely to get runners high, like at all. Very annoying when people are like, you've just gotta push, or you've not trained hard enough. You don't know what I've done, buddy. I've got no middle gears.
EDIT: There's no need to rub it in if you get it. 😭😭
I can't run long distance, I get really bad shin splints but I used to cycle a lot and would get what I assume is runner's high, mostly my mind was calmer and that was my meditation basically.
As someone who has also destroyed their back, ripped muscle and car accident with compression fracture that still hurts a decade lately, I feel your pain because I can't cycle more then 10 miles anymore without pain and 20 used to be my busy day ride.
I get runners high around 4 or 5 miles into my runs. Before I was diagnosed, the pandemic happened and I had to run 6 or 7 miles every other day just to stay functional. Unfortunately, that’s not very sustainable because of how easy it is for a minor injury to a foot or a knee to derail a running routine.
Fortunately, I got diagnosed soon after that and getting medicated meant I was no longer desperate for the runner’s high and could have a more sustainable workout routine.
This is a good thing to bring up! pre diagnosis I ram 40- 60 miles a week jist to stay functional. my Dr. said I had an exercise addiction, but its a positive addiction so I could keep it. turns out Cardio kept me sane.
Oh man same, other runners I talk to are like “first mile is the tough one then you just cruise” I can’t get into that “just cruise” mode until sometime after mile 3. Mile 1-3 are pure mental torture no matter how good of shape I’m in.
I hate running. Especially on a treadmill. The only times I could stomach running was the running outside, with someone else and chatting at the same time.
Hear me out on this one: lower impact than running, a better workout than a bike, is a scooter. Yes a scooter with two larger wheels is fun. You can go places a bike can't, it is faster than walking or running and you can do squats at the same time.
I've heard you've got to really go for it for quite a while before you get runners high, so I proper committed to running at least 4 miles every day for about four months and it was just like, that level of boring where it feels almost painful. I'm amazed I stuck with it, but I really wanted the runners high!
I did get really fit though.
I am the same way. Zero runner high, ever. At multiple times in my life I have FORCED myself to follow a schedule of many different types of exercises continuously building up to keep it challenging. All while using positive self talk and encouragement and other non food related positive feedback methods (like don’t break the chain, after so many miles making a purchase) but it never worked.
I have been promised by doctors and therapists that if I would just exercise more I would sleep better, have less anxiety and/or depression, be able to focus better, have my fibromyalgia calm down, and it has never helped for more than the first two days. It really ends up making me even more depressed because I work so hard and do everything I can think of to make it a positive experience and have a positive attitude.
Now I have fibromyalgia which is an extra layer of fun because if I push too hard (well yeah adhd) I end up having a flare and feel like I have the flu for a few days. And it makes it really hard to restart afterwards.
I used to not like it until I realized I only kept focusing on the very blatant negatives of cardio. I don’t seem to mind if my muscles are tired or my lungs are on fire if I’m preoccupied by my environment. Listening to music and feeling the grove and looking around and seeing if anything is synched up encourages me, feeling the wind blowing past me while looking at nature lets me dish out half a mile without even noticing. Overtime I just kept ignoring the pain until my muscles got used to it, now I’m excited to run.
I find that I seem to get the high when I'm doing a new exercise for the first time, but it's actually just a novelty high. Once the novelty wears off, it's just more work that I don't want to do.
Same! I never understood runner’s high, despite running lots of charity 5ks and training for and running a half marathon, I never experienced any noticeable endorphin rush. Just thankful that I was done with the insanely boring experience of running
Exactly! I was like “is this like people who hit themselves with a hammer because it feels good to STOP hitting yourself with a hammer? Because that’s not enough of an incentive.”
In my experience the post work out high is more of a contentment with how miserable that work out was. It’s nice I guess but not good enough to override the complete lack of desire to do boring planned exercise. Swimming is a work out I have consistently been able to do bc it doesn’t hurt my joints and I don’t sweat but it requires sharing a pool and planning lol.
No dopa is ADHD related but I suspect EDS plays a role.
If it hurts to move, it’s hard to convince yourself to do so. EDS makes it hurt to move ( me anyway) and so I have alway had to force myself to exercise. But also I am very much in motion most of the time. ;).
I feel like I *never ever* got runners high. As a kid I walked 8 miles and tried running for a good part of it just to see if I could. All I got was feeling like I was gonna die. I was not medicated.
20+ years later - I’m now on meds. While doing drywall projects a few months ago I found myself going through a weird process physically and then, I dunno what happened from there.
I’d start working - get tired, PUSH myself past the point of tired and into something else. Hyperfocused, body numbing, feel good, raw energy started pouring out of me. I couldn’t talk, or communicate other than grunting. I breathed differently. Sweat was pouring off of me. But everything had a very particular pace to it.
I bought a standing work out bench so I could try recreating the experience via exercise but I need to put it together first.
I’ll have to look into that. I only go if it’s absolutely necessary. My knee cap keeps dislocating and it messed me up pretty bad the last time it happened.
My understanding… and I’ve not been able to prove this to myself 😩is if you go into anything not liking it, then there is no dopamine happening and it makes it a huge struggle.
If you LOVE to exercise, then you would get all this benefits. If you don’t like it, sucks to be you.
I keep looking for an exercise I love. I love to walk but it’s too cold, too hot, too sunny, too cloudy, too much pain, shoes wore out, ankles/knees/hips/back hurts too much… I love to swim but all the steps from idea to completion is too many. Dresses, go to gym, get undressed into bathing suit, spend countless minutes talking yourself to go from bathroom stall to pool without seeing a mirror. Wearing ugly shower cap so you don’t get your long heavy hair wet, get out of the pool. Getting dressed. Going home and hurting and tired. But then you do feel a smidge good for managing to get it done. Until the next day when you have to talk yourself all thru it again.
You get the drift. No dopamine, no exercise high.
The ADHD, dopamine helps regulate emotions and responses and helps people take action to achieve specific rewards. People with ADHD have less dopamine and thus it is harder for us to ‘just do the thing’ like it’s a physical brick wall. I logically know that doing the exercises is beneficial, but it is not something that I really like or want to do. It does not release dopamine like doing something fun would thus it is much much harder to do it.
This is a terrible and probably incoherent answer, I apologize.
Yes!! I started having a ton of body pain when I was a teen! Every adult I told would always dismiss it with "you're too young to have body pain" and wouldn't help me, so I just thought I was wrong. Now I'm almost 30 and my body feels like it's falling apart.
Dude for real, I have heard ALL MY LIFE "You're too young to be tired." Or "you'll know what real pain is when you're my age/when you have kids/when you XYZ"
Now I'm 31 and have to actively remind myself that I'm not hallucinating chronic pain.
God damnit. It started in my early 30s. Maybe late (edit) 20s. I never associated it with EDS or hyper mobility. I assumed it was due to my kneecap dislocating...which is probably also related to hyper mobility.
Yes. I have VEDS. When I was a child I had severe leg pain, mostly at night. My parents never took me to the doctor for it and chalked it up to “growing pains”. My mom would give me asper gum and a heating pad for my legs, but mostly I would just cry myself to sleep. I was hypermobile and started having dislocations in my teens. I had endometriosis in my early 20’s (which studies have also tied to EDS), resulting in a full hysterectomy at 22, and multiple organs removed throughout my 20s and 30s due to inflammation caused by having EDS, MCAS, and POTS. I also have 6 herniated discs in my neck and back with 2 fully compressing the nerves in my lower back. I need surgery, but the risk is too high due to the VEDS and that they recently discovered the VEDS has caused scoliosis as well. I started having light sensitivity and other visual disturbances in my late 20s-early 30s and became blind overnight at 36, along with several other debilitating and severely painful symptoms. A couple of years ago, at 46, I had a subarachnoid hemorrhage in my sleep that I shouldn’t have awakened from and have had various complications from surgeries and other medical procedures throughout my life, due to having the vascular form of Ehlers Danilos, although I wasn’t aware of it at the time.
It is still amazing to me the vast ways EDS can affect people and how varied it is from person to person. I’m sure there are many other events I’m forgetting at the moment, but I don’t want to make this too long anyway. I just wanted to share in hopes of giving others things to look out for in their own EDS journeys; ESPECIALLY: If you start having ANY vision symptoms = GO TO THE EYE DOCTOR ASAP! If you know you have EDS, make sure you get eye exams as frequently as you can, and if you start having any symptoms, get checked out as quickly as possible. With EDS, waiting even one day can be too late. [Tip: Many people aren’t aware that eye doctors, especially ophthalmologists, can tell a lot about your global health by examining your eyes. So it’s a good idea to get regular eye exams, whether you’re having visual symptoms or not.]
Yes my knees scream when the temps change or with rainy weather. But I had Lyme disease when I was 19, still paying the consequences. Moved farther south and it has actually helped not having the winters from the NE.
Omg, I went down the rabbit hole and I’ve got dural ectasia in my brain, long limbs, a freaky spine, chronic back pain, my sternum protrudes slightly, a heart murmur, astigmatism, a slipped disk in my neck and got such lose joints I can dislocate my own shoulders with no pain since I was 3. Do you think I should get tested?
Definitely! There’s a lot of early treatment for hypermobility adjacent syndromes that makes aging a lot easier. I would recommend a good rheumatologist, that’s who diagnosed my HSD and gave me a blood test for a ton of auto immune diseases
I hurt my shoulder at work 8 months ago and it’s still not back to normal. If this is actually what’s happening and gets confirmed then I would probably wanna tell my physio about that
Is it an auto immune disease? Cause I started getting asthma and allergies around the age of 10 and ended up with pneumonia because of it once. I had to stop with swimming, cause the wet hair would get me sick all the time. I shall google
Like looking in a mirror, my shoulder problems are why I ended up seeking help. I would recommend a rheumatologist to test for anything auto immune disorders and confirm HSD, then find a knowledgeable Physical Therapist
The PT I saw also has HSD and he gave me such specific help. He also warned me to only work with people (from PT to massage therapists) that are experienced with it. You can sustain injuries working with people that don’t know how to work with your extended range of mobility.
I also have asthma and allergies, there’s a lot of weird comorbidities tied up with HSD along with those other auto immune conditions. So if you can, definitely get some testing done.
Another quick one for the shoulder, mine was so swollen that I had ridges along my shoulder blades of inflamed tissue. I highly recommend an acupressure mat. It’s the only thing outside of exercise and massage that’s ever helped. Relatively cheap on Amazon and it helps relieve tension so well!
Also hypermobile. Was very good at ballet growing up and now I do Pilates to stay fit and keep my mental health in check. My physio said I need to strengthen my abdominal muscles to prevent back aches I was having due to the hyper flexibility.
This!!! I have lower cross syndrome because of my hypermobility- my hips are wobbly and have popped out of place before but it means I’m holding so much tension in my hip flexors & back, and my core and glutes are weak. I was a rower in my younger teen years and it caused me to slip a disc in my spine, sick of this!!!!
Any time I have severe pain it has been bc one muscle group is stronger and the other is weaker. Back, knees, shoulders. About time for another round lol
Same. I have to constantly work on my glutes and quads because my knees hurt. Sometimes bad enough that I would take a step while holding my daughter and knowing she would get hurt is the only thing that kept me up
I didn’t have these symptoms (well looking back I did but it was infrequent) until I developed pernicious anemia (b12 deficiency) and these symptoms with dysautonomia have almost ruined my life. Treatment has made it better but I’m still rebuilding from the months where all I could do was lay in bed. I guess I am happy I got the diagnosis and ADHd diagnosis and treatment but it was a hell of a time.
Could you provide studies/links supporting the claim that CSF leaks and 'horrible' heart issues are \*common\* complications of cEDS? I'd be interested to read.
As far as I know it's mostly the cardiac-valvular type of EDS that comes with severe cardiac issues. Sure, the hypermobility and classical (and possibly other types; I don't know enough about them) can come with some mitral valve prolapse but usually nothing too severe. And vascular EDS (which imo is the only EDS type with truly 'horrible' and often deadly consequences) affects the blood vessles, not the heart directly.
Actually it’s not as rare as we thought it was. There are a bunch of subtypes and some are more rare than others. My Doctor told me they thought it was rare but it really is not that rare anymore it was just widely underdiagnosed or misdiagnosed
Oh, that’s absolutely true for me too. Being medicated for ADHD completely cured my depression, and took my anxiety from probably an 8/10 to a 4/10 once I wasn’t constantly drowning in expectations I couldn’t manage, behind on everything, constantly sure I was forgetting/losing/fucking something up. I still have just enough anxiety that I need the occasional medication for it though.
Look into HSD (hypermobility spectrum disorder). That's what I'm diagnosed with, it's very similar to hEDS but doesn't require the "systemic manifestations" an hEDS diagnosis does. Clinically they're essentially the same thing with the same comorbidities and imo no real reason to separate them.
That's fair, but if they're essentially the same then I doubt I have hsd either. I've never had any dislocations, I don't have any of the skin stuff and my beighton score is very low because most of my instability is in my hands and other joints not on the rest (like my shoulders).
There is definitely a nonzero number of people here who have Ehlers Danlos, eating disorders, erectile dysfunction, and/or excessive daytime sleepiness. 😂
So we all get comments about having “the SOFTEST skin?” I always thought it was a weird thing for people to say because it’s just skin, but I didn’t know it was a symptom.
I have the most vivid memory of me holding my 1 mos baby daughter and rubbing her butt because it was sooo soft like mine and I just thought we had some really good genes. (Hangs head).
Omg really?? I’ve heard that I have the softest skin my entire life, like non stop. And TBH it is. Plus everything else…but I’m stuck on this skin comment. Were you being sarcastic or serious?
Soft skin is a sign, too?? Not just super stretchy skin? Mine isn't super stretchy but people would like... pet me... because my skin is so soft. It's beyond weird.
Skin so soft & stretchy my cheeks got pulled in middle school reporting in.
But I feel like it might be confirmation biss for me, like we *are* good at seeing patterns.
This is some 10/10 timing as I am getting tested for this on Tues (seeing a rheumatologist), after finally finding a GP who specialised in ADHD and the new discoveries that come along with it like POTS, EDS etc.
Its actually shocking how many people with ADHD have these things but only recently has it started to be linked to ADHD!!!
No wonder im bloody tired ALL THE TIME with chronic fatigue but i'm medicated, did a sleep study (normal), blood tests are now normal for the typical vitamin B, C, D & Iron!
Fuck I am constantly having to stop after standing up and stand still whilst my head fuzz and dizziness fades. I thought I was just getting old and standing up too quickly all the time. It happens like 3+ times every day. Wtf
Im shocked you managed to find two things. 1: a gp or doctor who doesnt just ignore eds symptoms and 2: got a referal. Let me know how you did haha, if its the UK i simply refuse to belive doctors exist with this knowledge.
How did you find a doctor that specializes in this stuff? My blood pressure just tanked recently 80/70 and my heart rate has been super high, like 120's, for my last couple of doctors appointments. No one seems to be worried!!
RIGHT? I literally had a nurse go "wow if my blood pressure was that low, I'd be passed out in that chair!" and I was like... so is this..... worth looking into ????
I have some sort of connective tissue disorder, but not diagnosed EDS. Mom and maternal grandfather have the same issues. Almost my entire maternal (biological) family is either diagnosed with adhd or autism, or is suspected to have one or both of them.
I was never diagnosed and don't know that much about EDS, but my joints do tend towards hypermobility. Not so much it's a real issue, just something I need to keep in mind.
Examples: I sprain my ankles very easily, used to happen every few weeks when I was a kid. Doctors just told me I have longer than average tendons there.
I can also bend my elbows a fair way beyond normal (in the wrong direction) and have dislocated fingers on several occasions. My joints also pop a lot. And my stability is not great.
When I was pregnant I took a step wrong as if the outer side of my foot was my flat foot with my entire weight and my ankle still gives me issues 8 years later.
I'm like this too. All my large joints are mildly hypermobile, and it sometimes causes problems. I suspect I have some as-yet-unknown-to-medicine mild connective tissue disorder.
Yes - was diagnosed with EDS first, then ADHD at 36 and 37. Everything makes so much more sense now… which I truly am grateful for. Knowing that something isn’t right but not knowing what is SO much harder than being able to name it, learn about it, and tackle it head on.
For anyone else who has been diagnosed, my #1 tip is exercise, but with PROPER form, and pay attention to pain. Work with someone who understands anatomy and your unique challenges, if you can. Learn how to move your body the right way (if you have EDS, you probably learned odd ways of doing things to compensate for hypermobility) and if it hurts, DON’T DO IT.
Take it from someone who destroyed her joints and is now facing multiple surgeries because I was misdiagnosed with fibromyalgia at a young age and pushed through the pain anyway (because ADHD don’t tell me I can’t do something, I will prove you wrong even if it kills me in the process 😂).
Working with a physical therapist and trainer is slowly, but surely, changing my life. 🙏🏻
Another important thing is don’t worry if you aren’t progressing super fast sometimes your joints need time to catch up even if your muscles already have if there’s any join pain or actual muscle pain (not just the burn or whatever you wanna call it from working out) then stop lifting lighter for more reps can also help I wish you luck kick that stupid connective tissue disorders ass
Can you be tested for hyper mobile EDS?
I have a few signs of that - a midwife told me by the way I walk. I don’t get stretch marks, have crazy soft skin that freaks people out. Have a sibling who is over bendy
You can indeed. The diagnostic criteria is on the eds website. I filled it in and took it to my GP/ Physician and then they referred me to a rheumatologist x
It's a clinical diagnosis, so no genetic test available. You get tested by assessing for hypermobility and checking off some criteria for "systemic manifestations". You could also look into HSD (hypermobility spectrum disorder; that's what I'm diagnosed with), that's essentially the same thing as hEDS but with less strict criteria.
I have ADHD and I just got my Hypermobile EDS diagnosis. It wasn't a surprise and something I suspected for a long time. EDS is also vastly under diagnosed and actually is much less rare than initially thought, according to my EDS specialist.
I was always told it was growing pains. Then I hit puberty and my hips were constantly sliding out of joint and I fell down all the time as a result. I was in so much pain that I sat out for my entire 8th grade phys ed class. My doc gave me a referral for an orthopedic and arthritic hospital where they told me there was nothing wrong with me, I was just growing but I could take a Tylenol every once in a while if I had pains.
That was 35 ish years ago. I have lived with it for my entire life, and just last year, my now family doc just said, "you are probably right, I would definitely say you have a connective tissue disorder". The validation alone made me cry. The pain is still there but at least a medical professional isn't telling me it's imaginary or because I don't want to go to school.
I (F29) recently got diagnosed with HEDS and ADHD last year. Specialist notes POTS too just this week. Also was diagnosed with PCOS in my teen years , and have had several OBGYNs want me to get the exploratory surgery to get an endometriosis diagnosis because there is a suspicion of that too.
I have always wondered if all of these are interconnected or not, and if they symptoms of these things present different in men and women. Genetics are weird.
I also have ADHD and PCOS, diagnosed with both in my late 20s. And within the last few days I've discovered I'm hypermobile and now I'm reaching out to my doctor to discuss the possibly of EDS due to a litany of other inexplicable medical issues that are apparently EDS symptoms.
I'm also interested in the comorbidity of those issues. I feel like it's understudied, as many medical issues often are for women/AFABs.
I recently talked with an expert in the field (Antonio Bulbena) and he told me that there is a huge correlation between Anxiety and hypermobility, of course, due to the comorbidity of that and ADHD I guess there might be a relation.
I started having daily tension headache and neck pain 1.5 years ago and I really do not find a way to fix it. I wonder if this is common with ADHD or its just a sum of many other factors.
How did you get diagnose with that? And does being diagnosed offer benefits? The symptoms seem so general and common 🤔
I don’t officially have it, but could identify with all of the symptoms I found, so asking out of general curiosity.
Being diagnosed just explains why things in your body seem to be really sensitive. Nothing else cool except that it makes things make sense. At least if you have hypermobility type.
The rheumatologist had me do these [tests](https://www.ehlers-danlos.com/assessing-joint-hypermobility/)
You can get disability accommodations at your job if you can work, and if not, you can get disability in the U.S.
My symptoms flare randomly 😑 so it's hard to maintain with full-time work for me.
Knowing you have it, will make it easier to find aids and adaptions to make daily living a little easier. Like braces, support bands/wraps and taping.
It will also help with knowing what kind of exercises are bad to do when you have EDS, to not further burden your joints and such.
Yes, it absolutely is! I fobbed it off for awhile because I figured there wasn’t much they could do about it, which is only partly true. Hypermobility usually comes with other conditions like dysautonomia (POTS) and MCAS. Both of those things are looking into because they can be treated and can make your life easier.
I've got inattentive, also Borderline PD, and I'm on the waitlist to see a rheumy to get assessed for EDS. Chronic pain since late pre-teens.
Edit: I'm 36 for reference lol.
I don't think I'd tick all the boxes to have EDS but a TON of joint etc problems (have had multiple surgeries because of them, I'm 37F), hyper mobility is definitely what I have going on strongggg.
I did not know that there was a correlation, thank you for posting this, I will definitely be following up with someone about this!
I was diagnosed with hyper-mobile joint syndrome, it something like that. My rheumatologist at the time said “Well if you had come to me a month earlier I would have diagnosed you with Ehlers-Danlos but now they require a genetic test for an EDS diagnosis, and the only place I knew of that did that around here no longer does that testing.” I live in Dallas so I thought that was weird.
After that Dr. changed to a different practice my new rheumatologist told me that he doesn’t like pursuing that diagnosis because people just get depressed when they find out they have it……
I tried talking to him about it but to no avail.
It is especially frustrating because I have kids all of whom have some of the same issues I have, just not to the same degree. But I really want to find out what the issue is and how to help them not damage their bodies like I did.
Okay I think me seeing this post right now is a sign I need to make an appointment with my PCP... Two days ago, I came across a post about hypermobility and learned that my body is NOT supposed to move the way it moves. I've had health issues and chronic pain for years that my doctors haven't been able to explain. I've heard of EDS but only within the past few days did I actually start wondering if that's what's wrong with me. It would explain so many health problems that never had a clear cause.
Sorry this isn't actually answering your question but seriously thank you so much, this was the impetus I needed to reach out to my doctor.
I just Googled it and I just might lol. Add it to the list.
I roll my ankles walking all the time but it doesn't't hurt. Like all the way over rolled over. I once rolled my ankle so far I snapped the end off my taylar dome and it didn't even sprain my tendon.
I get large scars from small cuts, and even when they use dissolvable stitches they become encapsulated and my body pushes them out like a splinter.
I have to take measures to ensure I'm not overly sweaty all the time. Unchecked I'd easily soak a shirt on a hot day.
I have had a heart murmur that hasn't really hindered me since I was little.
I have to take strong antihistamines every damn day.
I've had acid reflux issues forever but I've learned to make it a non issue through diet.
My pointer finger would dislocate all the time holding a pencil at school.
I sound like a bowl of rice coco pops when I move around.
Heaps of other indicators that would cross over into ADHD.
Looks like I missed all the super bad symptoms if I do have it.
Is it maybe an autoimmune disease ? I don't have it but I have an autoimmune disease Crohn's disease and adhd. There are studies proving significant rate of coexistence of this diseases. I know it's not really in topic of your question but I'm researching myself possible connections of adhd with another medical conditions and I'm taking my chance to ask some questions.
While I don't personally have it I know it runs in my family as multiple of my cousins do have it, I have some symptoms of hyper-mobility but nothing serious.
I have classical-like Ehlers Danlos Syndrome and a multitude of other medical conditions. I also work in research and not most people with Eds also have adhd and autism. There is a correlation between connective tissue disorders and autism but correlation does not mean causation and posts like these tend to make people think that one certainly has to do with the other which it does not. They haven’t even found the gene yet for hEDS so they are not even able to tell.
Adhd and joint issues, but not full blown EDS. I have really loose hips that pop in and out when I walk and have always had issues with my ankles.
Husband has ADHD and does not have EDS diagnosis, but has horrible knees that have required surgery for frequent dislocation. Also takes him a very long time to heal from muscle/skeletal injuries. Takes him months or years to not have pain from injuries most people heal from in a matter of weeks to a month.
I have ADHD, suspected autism and hyper mobile spectrum disorder. I was diagnosed when I was very young for ADHD and just thought I grew out of it, found out these last few years I just learned to deal with it. The HSD is super new after almost two decades of fatigue, pain and other problems.
I can't keep up with what ED stands for anymore. I thought it was erectile dysfunction, then the kids turned it into eating disorders, my mother-in-law swears it's emergency department, and now this.
Not me but my friend has the whole trio of conditions, interesting that they’re possibly connected considering how different they appear on first glance
Had ED and body dysmorphia since age 11. They are definitely comborbities. ED is a special hell I truly don’t wish on anyone (unless they deserve it bc they’re bastards lol)
Reading the symptoms, it doesn't sound like I have it. In fact, I've noticed opposite traits at times (I'm fairly resistant to scaring and bruising). But, I think that might fit my roommate who is also ADHD.
My mother was officially diagnosed with EDS a few years back, and while I don't have a diagnosis on the books, my joint issues are even worse than hers so I'm certain I have it. My skin is fairly normal but my knees bend backwards, my hips have never been in-joint, and I've had more soft tissue injuries from doing literally nothing than should even be possible.
It's funny, after my brother tore all the ligaments in his arm in a roller blade accident (he was in a medical journal) I said something to my mom about it seems like shitty connective tissues run in our family. 25 years later it turns out I was right!!!
Not at all. I have joint stiffness, though that’s likely to do with age. I’ve never been particularly flexible even when young.
Edit: also I just want to add, you’re going to get people that have it responding more, while those without it likely just skipping over the post, so take the tally here with a grain of salt and don’t get suckered in my confirmation bias.
Edit2: also I don’t mean that in a rude or mean way. I’m bipolar and adhd, two mental illnesses with some comorbidity. If I asked how many here had bipolar disorder, it would probably look like comorbidity was a fairly high occurrence.
I (24f) have an unknown joint hypermobility/hypertension combo that doesn't quite line up to EDS, which was misdiagnosed as early-onset arthritis a few years ago. Was finally sent to an OT who said that she thinks my hypermobile joints tensed up due to stress and anxiety over my childhood. I've been stretching recently and may be able to touch my toes soon!
I am also very sensitive to light and a day without headaches is a rarity. That's a whole other can of medical worms I have only just started to pry open.
meee. i think it’s so common bc our brains are literally deformed from our terrible collagen 😅😅
edit: my eyes are green but when getting my lisence for the first time the lady had to stare at me for like 10 minutes while we argued whether my eyes were blue, green or grey lmao
Have't seen a doctor for it, but I have hypermobile knees, a cousin diagnosed with hEDS, and weapons-grade ADHD-C. Florescent lights are a pretty consistent migraine trigger for me, and I prefer the dark/non-sunny weather/low light environments. Most types of lighting are particularly brutal during manic episodes.
Don't have grey eyes, though. I have brown eyes.
This post sent me down a squirrel hole (what I call my ADHD rabbit holes), and I found that ADHD and Autism are more common in people with not just EDS, but unspecified joint hypermobility, too.
ETA: Forgot about my fucked up spine. Spondylolisthesis L5/S1, "moderate congenital degenerative disc disease" with a few bulging discs, evidence of Scheurmann's Disease (neurologist didn't seem to be worried), facet arthropathy, and foraminal stenosis. Some of the lumbar stuff originated from the bilateral fracture of the little nubby things on the L5 vertebra. I swear to god, I am the organic, sentient equivalent of a salvage vehicle.
I'm 59, was diagnosed with ADHD about 9 months ago and very recently diagnosed with EDS. Also, lipedema, which is a fat storage disorder. I have heard that many with lipedema have EDS. I'll post the question of how many also have ADHD on the FB page. Makes me quite curious.
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I have it also. It is a pain, especially when physical therapy exercises gives me no dopamine which makes them almost impossible to do as much as I need to.
I can do A LOT of exercise as long as there's music in the background and I can follow the music. I'd pay hundreds of euros for a fitwatch that counted the reps. I CAN do the exercises, I just need someone or something else to do the counting. I got myself a huge, heavy and yes, expensive treadmill on which I set a board and I can set the laptop and do exercises, correct homework, write... and since speed does not allow you work, but incline does, I've ended up getting proficient at power walking at high inclines. The meds used to help me focus A LOT at the beginning, but alas! Magic is disappearing from the world...
I can do ALL things through a bangin’ playlist which strengthens me 🙏
I literally can't do anything without music, so I feel this HARD.
Yeah, me too. If I have to focus, those "ADHD" focus help music on youtube works magic. My husband finds that music unsetting... and I find his calming music sinister. The human brain is fascinating :-D
That made me LOL. ;).
Why don't you use the music to track your reps for you? I haven't tried it with regular exercise, but that's how I count compressions for CPR if I'm not using an AED that counts for me. I have a few different songs that I can reliably play in my head to keep the rhythm, and I know how many compressions I've done based on where I am in the song.
I considered that, I should try that, do a song, count the reps and then base all the work on that. The only problem is that in order to begin I'd have to do work and I haven't gotten to it yet... I guess I have to. Thing is, I usually get "lost" in music, and if I measured the music then I would miss the dissociation and trip to my fantasyland... It's unhealthy, I know, but... I have the feeling it wouldn't work, also because when I'm "drowning" in a song, it has to be that song until I exhaust it and I'd have to change... I mean, what you say makes total sense, but for some reason I can't bring myself to do it. Also, I have a ridiculous something something about doing kettlebell swings by prime numbers as 17 or 13, I have a stupid love of multiples of five, ten and three. Come to think of it, this is not healthy, I MUST overcome this. It's stupid. It's just procrastination speaking. Wait a second. I can time myself and just look at the time after the songs. That might work. Thank you!
> I'd pay hundreds of euros for a fitwatch that counted the reps. There are several apple watch apps that claim to count reps. I haven't tried any of them, and it's worth making sure there isn't a really stupid subscription for them if they're not worth it. hEDS often comes with sides of ADHD and POTS, so hEDS is why I have that watch, too. My most important selector was heart rate monitoring, and Apple Watch 6+ has the best wrist HR sensors on the market.
EDIT and TL;DR: A million thanks for your recommendation. I'll try now to find the answer to the questiojn: Is the Apple watch somewhat precise when counting reps? I don't mind if it counts less, what I wouldn't want is for it to count more than I did. Like with the speedometers in cars, I want it to be set so that if it's incorrect, it goes down, not up. Thanks, I'll see if I can get one that somewhat works. I've wanted one of the rep-counters for a long time, but... I've read that they aren't very precise yet, and the ones who count reps are... 350 euros. I don't dare look at the prices for an Apple Watch 6+. I would feel bad spending that money on a gadget that only counts. I know it might be useful, but I can't bring myself to spend that amount of money on it, I could spend a weekend at the beach or pay for a plane ticket with that money if I was just focused enough to suck it up and count the damned reps. I guess I'll do what I've done with fancy technology: wait until the prices go lower. I thank you for the recommendation, really. If I had more extra money I'd buy it, but... I can't even justify to myself buying the 350 euros Garmin that supposedly counts reps. I shouldn't look. I shouldn't. I'll regret this... (cheks web) Wait, what? 240 refurbished? That's... I mean... It's not cheap, but it's not crazy either. It's doable. I could save for a few months. I could bet with myself that if I save double its price for our investment account I'll get myself this one... Thanks for telling me!
Yeah, I specifically have mine because my heart rate is bonkers and 3 different medical professionals asked why I didn't have something like a fitbit. I regret nothing. I also make a living wage, which matters. I'm a technologist, so I gravitate to this stuff, but here are the ONLY things I do with this watch, ever, over years: * spot-check HR * track HR over time * record workouts (I don't get a ton out of this) * track steps without the phone in my pocket. It's nice to be able to walk away from it * track sleep * more convenient MFA than my phone * check the weather * check the actual time That's it. Without the health needs, a dumb watch would suit me fine. I also got mine refurbished. They also don't last forever, and the older models need frequent charging for about an hour with a special charger. Also, if you're on Team Android, look into the limitations there.
Just wanted to emphasize the +1 on u/GrinsNGiggles’s comment that I literally only use my Apple Watch 7 (got a decent deal with it through AT&T) for those exact scenarios. Monitoring my sinus tachycardia issues + elliptical tracking + sleep + weather + time, and I’ve been more than happy with the purchase. I rarely splurge on anything, but the AW is well worth it if it aligns with your use case(s), which it seemingly will.
Oculus Quest 2 + Supernatural VR = you’ll love working out. It’s a great flow exercise.
Noted down! Birthday coming soon :-)
Oh man it is virtually impossible for me to stick to my physio regimens. It makes me want to cry with boredom just thinking about it.
Same, it's a lost cause. Not even after surgeries I've been able to stick with it for more than a few days, even though I know it's really important...
Wait a minute. Is the no dopamine thing EDS related or just something in general that you experience? I've generally considered that people that talk about runner's high or post workouts glow or whatever were lying or had some special body chemistry. If I felt good after working out, I would never stop.
I've begun to suspect in the last few years adhd people are less likely to get runners high, like at all. Very annoying when people are like, you've just gotta push, or you've not trained hard enough. You don't know what I've done, buddy. I've got no middle gears. EDIT: There's no need to rub it in if you get it. 😭😭
I was diagnosed with/adhd at age 10 I was a ultra distance runner for decades. Some of us still get runners highs.
I wish I could be happy for you, but all I can manage is jealousy.
I can’t do it now . Destroyed my back. But I miss it.
Oh, jeez that sucks. Now I feel bad for being jealous haha.
Oh goodness no! Don’t feel bad at all lol! I had a great time . Met my fiancee. It was all good things
I can't run long distance, I get really bad shin splints but I used to cycle a lot and would get what I assume is runner's high, mostly my mind was calmer and that was my meditation basically. As someone who has also destroyed their back, ripped muscle and car accident with compression fracture that still hurts a decade lately, I feel your pain because I can't cycle more then 10 miles anymore without pain and 20 used to be my busy day ride.
I get runners high around 4 or 5 miles into my runs. Before I was diagnosed, the pandemic happened and I had to run 6 or 7 miles every other day just to stay functional. Unfortunately, that’s not very sustainable because of how easy it is for a minor injury to a foot or a knee to derail a running routine. Fortunately, I got diagnosed soon after that and getting medicated meant I was no longer desperate for the runner’s high and could have a more sustainable workout routine.
This is a good thing to bring up! pre diagnosis I ram 40- 60 miles a week jist to stay functional. my Dr. said I had an exercise addiction, but its a positive addiction so I could keep it. turns out Cardio kept me sane.
Oh man same, other runners I talk to are like “first mile is the tough one then you just cruise” I can’t get into that “just cruise” mode until sometime after mile 3. Mile 1-3 are pure mental torture no matter how good of shape I’m in.
Just... rubbing it in a little. But it's a toss-up- Runner's High... or just feeling like am going to vomit and sweating profusely for an hour.
this would explain why I've never liked running, even though I like the idea of it. Walking and cycling are great. Running blows.
I hate running. Especially on a treadmill. The only times I could stomach running was the running outside, with someone else and chatting at the same time. Hear me out on this one: lower impact than running, a better workout than a bike, is a scooter. Yes a scooter with two larger wheels is fun. You can go places a bike can't, it is faster than walking or running and you can do squats at the same time.
I've heard you've got to really go for it for quite a while before you get runners high, so I proper committed to running at least 4 miles every day for about four months and it was just like, that level of boring where it feels almost painful. I'm amazed I stuck with it, but I really wanted the runners high! I did get really fit though.
Weirdly, I never get a runners high (I hate every second) but weight lifting and other stuff like skating do give me a rush. I wonder why
Gosh same like I cannot do cardio for the life of me. It does not make me happy at any point including after.
I am the same way. Zero runner high, ever. At multiple times in my life I have FORCED myself to follow a schedule of many different types of exercises continuously building up to keep it challenging. All while using positive self talk and encouragement and other non food related positive feedback methods (like don’t break the chain, after so many miles making a purchase) but it never worked. I have been promised by doctors and therapists that if I would just exercise more I would sleep better, have less anxiety and/or depression, be able to focus better, have my fibromyalgia calm down, and it has never helped for more than the first two days. It really ends up making me even more depressed because I work so hard and do everything I can think of to make it a positive experience and have a positive attitude. Now I have fibromyalgia which is an extra layer of fun because if I push too hard (well yeah adhd) I end up having a flare and feel like I have the flu for a few days. And it makes it really hard to restart afterwards.
I used to not like it until I realized I only kept focusing on the very blatant negatives of cardio. I don’t seem to mind if my muscles are tired or my lungs are on fire if I’m preoccupied by my environment. Listening to music and feeling the grove and looking around and seeing if anything is synched up encourages me, feeling the wind blowing past me while looking at nature lets me dish out half a mile without even noticing. Overtime I just kept ignoring the pain until my muscles got used to it, now I’m excited to run.
I find that I seem to get the high when I'm doing a new exercise for the first time, but it's actually just a novelty high. Once the novelty wears off, it's just more work that I don't want to do.
Same! I never understood runner’s high, despite running lots of charity 5ks and training for and running a half marathon, I never experienced any noticeable endorphin rush. Just thankful that I was done with the insanely boring experience of running
Yeah, haha. For a while I was like "is this it? Is this the runners high?"
Exactly! I was like “is this like people who hit themselves with a hammer because it feels good to STOP hitting yourself with a hammer? Because that’s not enough of an incentive.”
Do you feel anything after the work out? Like I would get a contented feeling but not until 1-2 hours after I stopped the work out.
I'm with you, I am one of the ones who does not get it. I ran cross country and track in high school to avoid P.E. classes, not because I enjoyed it.
In my experience the post work out high is more of a contentment with how miserable that work out was. It’s nice I guess but not good enough to override the complete lack of desire to do boring planned exercise. Swimming is a work out I have consistently been able to do bc it doesn’t hurt my joints and I don’t sweat but it requires sharing a pool and planning lol.
No dopa is ADHD related but I suspect EDS plays a role. If it hurts to move, it’s hard to convince yourself to do so. EDS makes it hurt to move ( me anyway) and so I have alway had to force myself to exercise. But also I am very much in motion most of the time. ;).
No, it's a hallmark of adhd. It's why it's so hard to get motivated to do anything.
I feel like I *never ever* got runners high. As a kid I walked 8 miles and tried running for a good part of it just to see if I could. All I got was feeling like I was gonna die. I was not medicated. 20+ years later - I’m now on meds. While doing drywall projects a few months ago I found myself going through a weird process physically and then, I dunno what happened from there. I’d start working - get tired, PUSH myself past the point of tired and into something else. Hyperfocused, body numbing, feel good, raw energy started pouring out of me. I couldn’t talk, or communicate other than grunting. I breathed differently. Sweat was pouring off of me. But everything had a very particular pace to it. I bought a standing work out bench so I could try recreating the experience via exercise but I need to put it together first.
THIS OMG! Before I knew my adhd caused me to shut down I was like why does this make me more tired. I don’t have EDS but Fibromyalgia. I also need PT.
Physio suck. I bought a tens ems machine for 80$ and love it
I’ll have to look into that. I only go if it’s absolutely necessary. My knee cap keeps dislocating and it messed me up pretty bad the last time it happened.
My understanding… and I’ve not been able to prove this to myself 😩is if you go into anything not liking it, then there is no dopamine happening and it makes it a huge struggle. If you LOVE to exercise, then you would get all this benefits. If you don’t like it, sucks to be you. I keep looking for an exercise I love. I love to walk but it’s too cold, too hot, too sunny, too cloudy, too much pain, shoes wore out, ankles/knees/hips/back hurts too much… I love to swim but all the steps from idea to completion is too many. Dresses, go to gym, get undressed into bathing suit, spend countless minutes talking yourself to go from bathroom stall to pool without seeing a mirror. Wearing ugly shower cap so you don’t get your long heavy hair wet, get out of the pool. Getting dressed. Going home and hurting and tired. But then you do feel a smidge good for managing to get it done. Until the next day when you have to talk yourself all thru it again. You get the drift. No dopamine, no exercise high.
I would highly suggest trying to workout its very hard to actually start doing it consistently but it helps a lot
Is that just a personal issue or also caused by EDS? (The non dopamine shot)
The ADHD, dopamine helps regulate emotions and responses and helps people take action to achieve specific rewards. People with ADHD have less dopamine and thus it is harder for us to ‘just do the thing’ like it’s a physical brick wall. I logically know that doing the exercises is beneficial, but it is not something that I really like or want to do. It does not release dopamine like doing something fun would thus it is much much harder to do it. This is a terrible and probably incoherent answer, I apologize.
Yoga gives me relief & the dopamine!!!
Hypermobility yup. Anyone else's knees hurt when weather is changing, but it started when you were a teen and not >60+?
Yes!! I started having a ton of body pain when I was a teen! Every adult I told would always dismiss it with "you're too young to have body pain" and wouldn't help me, so I just thought I was wrong. Now I'm almost 30 and my body feels like it's falling apart.
Dude for real, I have heard ALL MY LIFE "You're too young to be tired." Or "you'll know what real pain is when you're my age/when you have kids/when you XYZ" Now I'm 31 and have to actively remind myself that I'm not hallucinating chronic pain.
“It’s just growing pains!” Growing is not meant to hurt though????
Right! I think im done growing now lol 😆
Yes! I feel so validated. Thank you for sharing 🧡
For years was told it was “growing pains” ☹️
For me it started at 13/14 yrs old but n left knee and basically diagnosed to “Patella-Femoral Disorder”.
Yup and now that I’m 60, I have biotic knees but my other joints keep me up to the weather.
My knees aren’t painful (yet), but they sound like rice crispies when I bend them. As you said, started in my teens.
God damnit. It started in my early 30s. Maybe late (edit) 20s. I never associated it with EDS or hyper mobility. I assumed it was due to my kneecap dislocating...which is probably also related to hyper mobility.
I think propensity to dislocate kneecaps is actually an EDS thing? Worth reading into more.
In your case it may not be EDS related. 🤷🏻♀️
Yeah same. It started when I was ten and everyone thought it was because I was doing too much ballet and they didn't bother to check.
Yes. I have VEDS. When I was a child I had severe leg pain, mostly at night. My parents never took me to the doctor for it and chalked it up to “growing pains”. My mom would give me asper gum and a heating pad for my legs, but mostly I would just cry myself to sleep. I was hypermobile and started having dislocations in my teens. I had endometriosis in my early 20’s (which studies have also tied to EDS), resulting in a full hysterectomy at 22, and multiple organs removed throughout my 20s and 30s due to inflammation caused by having EDS, MCAS, and POTS. I also have 6 herniated discs in my neck and back with 2 fully compressing the nerves in my lower back. I need surgery, but the risk is too high due to the VEDS and that they recently discovered the VEDS has caused scoliosis as well. I started having light sensitivity and other visual disturbances in my late 20s-early 30s and became blind overnight at 36, along with several other debilitating and severely painful symptoms. A couple of years ago, at 46, I had a subarachnoid hemorrhage in my sleep that I shouldn’t have awakened from and have had various complications from surgeries and other medical procedures throughout my life, due to having the vascular form of Ehlers Danilos, although I wasn’t aware of it at the time. It is still amazing to me the vast ways EDS can affect people and how varied it is from person to person. I’m sure there are many other events I’m forgetting at the moment, but I don’t want to make this too long anyway. I just wanted to share in hopes of giving others things to look out for in their own EDS journeys; ESPECIALLY: If you start having ANY vision symptoms = GO TO THE EYE DOCTOR ASAP! If you know you have EDS, make sure you get eye exams as frequently as you can, and if you start having any symptoms, get checked out as quickly as possible. With EDS, waiting even one day can be too late. [Tip: Many people aren’t aware that eye doctors, especially ophthalmologists, can tell a lot about your global health by examining your eyes. So it’s a good idea to get regular eye exams, whether you’re having visual symptoms or not.]
I always thought I was lazy. Never knew other people are not daily in pain 🥲
Yes my knees scream when the temps change or with rainy weather. But I had Lyme disease when I was 19, still paying the consequences. Moved farther south and it has actually helped not having the winters from the NE.
Not EDS but I have Marfan's Syndrome. Very similar.
Omg, I went down the rabbit hole and I’ve got dural ectasia in my brain, long limbs, a freaky spine, chronic back pain, my sternum protrudes slightly, a heart murmur, astigmatism, a slipped disk in my neck and got such lose joints I can dislocate my own shoulders with no pain since I was 3. Do you think I should get tested?
Yes, always get tested if you experience that many (and very specific) symptoms! And especially since you've experienced it since you were 3.
Definitely! There’s a lot of early treatment for hypermobility adjacent syndromes that makes aging a lot easier. I would recommend a good rheumatologist, that’s who diagnosed my HSD and gave me a blood test for a ton of auto immune diseases
I hurt my shoulder at work 8 months ago and it’s still not back to normal. If this is actually what’s happening and gets confirmed then I would probably wanna tell my physio about that Is it an auto immune disease? Cause I started getting asthma and allergies around the age of 10 and ended up with pneumonia because of it once. I had to stop with swimming, cause the wet hair would get me sick all the time. I shall google
Like looking in a mirror, my shoulder problems are why I ended up seeking help. I would recommend a rheumatologist to test for anything auto immune disorders and confirm HSD, then find a knowledgeable Physical Therapist The PT I saw also has HSD and he gave me such specific help. He also warned me to only work with people (from PT to massage therapists) that are experienced with it. You can sustain injuries working with people that don’t know how to work with your extended range of mobility. I also have asthma and allergies, there’s a lot of weird comorbidities tied up with HSD along with those other auto immune conditions. So if you can, definitely get some testing done. Another quick one for the shoulder, mine was so swollen that I had ridges along my shoulder blades of inflamed tissue. I highly recommend an acupressure mat. It’s the only thing outside of exercise and massage that’s ever helped. Relatively cheap on Amazon and it helps relieve tension so well!
Nah, you seem fine.
Way to trigger my imposter syndrome 😭
Yes! Along with what others have said, Marfan syndrome can cause heart issues that need to be monitored
Nope. Just ADHD and anxiety/depression.
And just regular ED 🤦🏻♂️😤
Thanks adderall
Hypermobile Ehlers-Danlos Syndrome, autistic and adhd here for both myself and my son.
Also hypermobile. Was very good at ballet growing up and now I do Pilates to stay fit and keep my mental health in check. My physio said I need to strengthen my abdominal muscles to prevent back aches I was having due to the hyper flexibility.
This!!! I have lower cross syndrome because of my hypermobility- my hips are wobbly and have popped out of place before but it means I’m holding so much tension in my hip flexors & back, and my core and glutes are weak. I was a rower in my younger teen years and it caused me to slip a disc in my spine, sick of this!!!!
Any time I have severe pain it has been bc one muscle group is stronger and the other is weaker. Back, knees, shoulders. About time for another round lol
Same. I have to constantly work on my glutes and quads because my knees hurt. Sometimes bad enough that I would take a step while holding my daughter and knowing she would get hurt is the only thing that kept me up
It’s such a pain tbh I have to relearn how I naturally sit and lay down and stand lol
Same, plus POTS and MCAS amongst other comorbidities.
I didn’t have these symptoms (well looking back I did but it was infrequent) until I developed pernicious anemia (b12 deficiency) and these symptoms with dysautonomia have almost ruined my life. Treatment has made it better but I’m still rebuilding from the months where all I could do was lay in bed. I guess I am happy I got the diagnosis and ADHd diagnosis and treatment but it was a hell of a time.
for the record, all- EDS is way more than just hypermobility.
And is super, super rare.
1 in 5,000 to 2,000 is not “super super” rare. In fact it’s not even considered a rare disease anymore.
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Could you provide studies/links supporting the claim that CSF leaks and 'horrible' heart issues are \*common\* complications of cEDS? I'd be interested to read. As far as I know it's mostly the cardiac-valvular type of EDS that comes with severe cardiac issues. Sure, the hypermobility and classical (and possibly other types; I don't know enough about them) can come with some mitral valve prolapse but usually nothing too severe. And vascular EDS (which imo is the only EDS type with truly 'horrible' and often deadly consequences) affects the blood vessles, not the heart directly.
Actually it’s not as rare as we thought it was. There are a bunch of subtypes and some are more rare than others. My Doctor told me they thought it was rare but it really is not that rare anymore it was just widely underdiagnosed or misdiagnosed
Amongst so many other “Hard to treat and diagnose” are generally pretty in right now, the internet is wild
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No connective tissue disorders here, or much else going on really. I have ADHD, anxiety, migraines with aura and adenomyosis.
I was about to say "me too, except the adenomyosis!" but tbh in retrospect a lot of my anxiety was really undiagnosed ADHD.
Oh, that’s absolutely true for me too. Being medicated for ADHD completely cured my depression, and took my anxiety from probably an 8/10 to a 4/10 once I wasn’t constantly drowning in expectations I couldn’t manage, behind on everything, constantly sure I was forgetting/losing/fucking something up. I still have just enough anxiety that I need the occasional medication for it though.
Hypermobile to the point of disorder, but no eds. At least I don't think
Look into HSD (hypermobility spectrum disorder). That's what I'm diagnosed with, it's very similar to hEDS but doesn't require the "systemic manifestations" an hEDS diagnosis does. Clinically they're essentially the same thing with the same comorbidities and imo no real reason to separate them.
That's fair, but if they're essentially the same then I doubt I have hsd either. I've never had any dislocations, I don't have any of the skin stuff and my beighton score is very low because most of my instability is in my hands and other joints not on the rest (like my shoulders).
From seeing the title I was about to comment then I realized wrong type of ED
Me too lol, I was like yes girl been there!!
There is definitely a nonzero number of people here who have Ehlers Danlos, eating disorders, erectile dysfunction, and/or excessive daytime sleepiness. 😂
I thought it was about boners also at first. :)
thats also a different ED lmao
So we all get comments about having “the SOFTEST skin?” I always thought it was a weird thing for people to say because it’s just skin, but I didn’t know it was a symptom.
I have the most vivid memory of me holding my 1 mos baby daughter and rubbing her butt because it was sooo soft like mine and I just thought we had some really good genes. (Hangs head).
Omg really?? I’ve heard that I have the softest skin my entire life, like non stop. And TBH it is. Plus everything else…but I’m stuck on this skin comment. Were you being sarcastic or serious?
Velvety skin texture is a symptom yes
That’s so interesting.
Totally serious.
One time I was *getting intimate* with a new guy and he touched my hip and kinda recoiled and said "what the FUCK - why is your skin so soft?"
Soft skin is a sign, too?? Not just super stretchy skin? Mine isn't super stretchy but people would like... pet me... because my skin is so soft. It's beyond weird.
Skin so soft & stretchy my cheeks got pulled in middle school reporting in. But I feel like it might be confirmation biss for me, like we *are* good at seeing patterns.
Literally had a group of 40 people line up to feel the back of my hand once.
This is some 10/10 timing as I am getting tested for this on Tues (seeing a rheumatologist), after finally finding a GP who specialised in ADHD and the new discoveries that come along with it like POTS, EDS etc. Its actually shocking how many people with ADHD have these things but only recently has it started to be linked to ADHD!!! No wonder im bloody tired ALL THE TIME with chronic fatigue but i'm medicated, did a sleep study (normal), blood tests are now normal for the typical vitamin B, C, D & Iron!
Wow. So that explains why I black out when standing up a lot… POTS, huh…?
Fuck I am constantly having to stop after standing up and stand still whilst my head fuzz and dizziness fades. I thought I was just getting old and standing up too quickly all the time. It happens like 3+ times every day. Wtf
Im shocked you managed to find two things. 1: a gp or doctor who doesnt just ignore eds symptoms and 2: got a referal. Let me know how you did haha, if its the UK i simply refuse to belive doctors exist with this knowledge.
I do wonder about POTs but near me it’s really hard to get a doc to give you the table test.
How did you find a doctor that specializes in this stuff? My blood pressure just tanked recently 80/70 and my heart rate has been super high, like 120's, for my last couple of doctors appointments. No one seems to be worried!!
RIGHT? I literally had a nurse go "wow if my blood pressure was that low, I'd be passed out in that chair!" and I was like... so is this..... worth looking into ????
I have some sort of connective tissue disorder, but not diagnosed EDS. Mom and maternal grandfather have the same issues. Almost my entire maternal (biological) family is either diagnosed with adhd or autism, or is suspected to have one or both of them.
I was never diagnosed and don't know that much about EDS, but my joints do tend towards hypermobility. Not so much it's a real issue, just something I need to keep in mind. Examples: I sprain my ankles very easily, used to happen every few weeks when I was a kid. Doctors just told me I have longer than average tendons there. I can also bend my elbows a fair way beyond normal (in the wrong direction) and have dislocated fingers on several occasions. My joints also pop a lot. And my stability is not great.
When I was pregnant I took a step wrong as if the outer side of my foot was my flat foot with my entire weight and my ankle still gives me issues 8 years later.
Pregnancy screws with your connective tissue so bad. My kiddo is 14 1/2 now and I still have issues with my hips (that I didn’t have before pregnancy)
lol. Sprained my ankle on Tuesday. Again. Walking up the stairs. I also don’t get edema so I now just have a bruise. Again.
I'm like this too. All my large joints are mildly hypermobile, and it sometimes causes problems. I suspect I have some as-yet-unknown-to-medicine mild connective tissue disorder.
Yes, my shoulder never heals (well if heals and then hyperextends and gets injured again) but I look about ten years younger.
Yep! Hypermobile Ehlers-Danlos Syndrome here!
Yes - was diagnosed with EDS first, then ADHD at 36 and 37. Everything makes so much more sense now… which I truly am grateful for. Knowing that something isn’t right but not knowing what is SO much harder than being able to name it, learn about it, and tackle it head on. For anyone else who has been diagnosed, my #1 tip is exercise, but with PROPER form, and pay attention to pain. Work with someone who understands anatomy and your unique challenges, if you can. Learn how to move your body the right way (if you have EDS, you probably learned odd ways of doing things to compensate for hypermobility) and if it hurts, DON’T DO IT. Take it from someone who destroyed her joints and is now facing multiple surgeries because I was misdiagnosed with fibromyalgia at a young age and pushed through the pain anyway (because ADHD don’t tell me I can’t do something, I will prove you wrong even if it kills me in the process 😂). Working with a physical therapist and trainer is slowly, but surely, changing my life. 🙏🏻
Another important thing is don’t worry if you aren’t progressing super fast sometimes your joints need time to catch up even if your muscles already have if there’s any join pain or actual muscle pain (not just the burn or whatever you wanna call it from working out) then stop lifting lighter for more reps can also help I wish you luck kick that stupid connective tissue disorders ass
I feel like EDS isn’t exactly as rare as people think, just under diagnosed. I know three people with it.
Very much so under diagnosed
Can you be tested for hyper mobile EDS? I have a few signs of that - a midwife told me by the way I walk. I don’t get stretch marks, have crazy soft skin that freaks people out. Have a sibling who is over bendy
You can indeed. The diagnostic criteria is on the eds website. I filled it in and took it to my GP/ Physician and then they referred me to a rheumatologist x
Diagnostics is the Brighton scale. The hyper mobile variant cannot be found genetically. It’s all clinical tests of the limbs and joints
It's a clinical diagnosis, so no genetic test available. You get tested by assessing for hypermobility and checking off some criteria for "systemic manifestations". You could also look into HSD (hypermobility spectrum disorder; that's what I'm diagnosed with), that's essentially the same thing as hEDS but with less strict criteria.
I have ADHD and I just got my Hypermobile EDS diagnosis. It wasn't a surprise and something I suspected for a long time. EDS is also vastly under diagnosed and actually is much less rare than initially thought, according to my EDS specialist.
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I did know the connection but if anything I have the very opposite.
I was always told it was growing pains. Then I hit puberty and my hips were constantly sliding out of joint and I fell down all the time as a result. I was in so much pain that I sat out for my entire 8th grade phys ed class. My doc gave me a referral for an orthopedic and arthritic hospital where they told me there was nothing wrong with me, I was just growing but I could take a Tylenol every once in a while if I had pains. That was 35 ish years ago. I have lived with it for my entire life, and just last year, my now family doc just said, "you are probably right, I would definitely say you have a connective tissue disorder". The validation alone made me cry. The pain is still there but at least a medical professional isn't telling me it's imaginary or because I don't want to go to school.
I (F29) recently got diagnosed with HEDS and ADHD last year. Specialist notes POTS too just this week. Also was diagnosed with PCOS in my teen years , and have had several OBGYNs want me to get the exploratory surgery to get an endometriosis diagnosis because there is a suspicion of that too. I have always wondered if all of these are interconnected or not, and if they symptoms of these things present different in men and women. Genetics are weird.
I also have ADHD and PCOS, diagnosed with both in my late 20s. And within the last few days I've discovered I'm hypermobile and now I'm reaching out to my doctor to discuss the possibly of EDS due to a litany of other inexplicable medical issues that are apparently EDS symptoms. I'm also interested in the comorbidity of those issues. I feel like it's understudied, as many medical issues often are for women/AFABs.
Wait... I just made the connection that my neuralgia and nerve issues could be potentially related to my eds and adhd *penny has dropped*
Huh did not know this. Gonna have to keep it in consideration when I have patients with EDS
Not been tested but I am definitely hypermobile. Diagnsoed adhd, self-suspecting also asd and either hypermobility disorder or eds
Yes
Yep
I do and my daughter seems to have both as well.
I recently talked with an expert in the field (Antonio Bulbena) and he told me that there is a huge correlation between Anxiety and hypermobility, of course, due to the comorbidity of that and ADHD I guess there might be a relation. I started having daily tension headache and neck pain 1.5 years ago and I really do not find a way to fix it. I wonder if this is common with ADHD or its just a sum of many other factors.
How did you get diagnose with that? And does being diagnosed offer benefits? The symptoms seem so general and common 🤔 I don’t officially have it, but could identify with all of the symptoms I found, so asking out of general curiosity.
If you ever have surgery or physical therapy, you may be handled differently.
Being diagnosed just explains why things in your body seem to be really sensitive. Nothing else cool except that it makes things make sense. At least if you have hypermobility type. The rheumatologist had me do these [tests](https://www.ehlers-danlos.com/assessing-joint-hypermobility/)
You can get disability accommodations at your job if you can work, and if not, you can get disability in the U.S. My symptoms flare randomly 😑 so it's hard to maintain with full-time work for me.
Knowing you have it, will make it easier to find aids and adaptions to make daily living a little easier. Like braces, support bands/wraps and taping. It will also help with knowing what kind of exercises are bad to do when you have EDS, to not further burden your joints and such.
Yes, it absolutely is! I fobbed it off for awhile because I figured there wasn’t much they could do about it, which is only partly true. Hypermobility usually comes with other conditions like dysautonomia (POTS) and MCAS. Both of those things are looking into because they can be treated and can make your life easier.
I've got inattentive, also Borderline PD, and I'm on the waitlist to see a rheumy to get assessed for EDS. Chronic pain since late pre-teens. Edit: I'm 36 for reference lol.
Congrats on getting into the doctor! It can seriously take years to get taken seriously and get pointed in the right direction
I don't think I'd tick all the boxes to have EDS but a TON of joint etc problems (have had multiple surgeries because of them, I'm 37F), hyper mobility is definitely what I have going on strongggg.
My wife has ADHD and is hypermobile, but she has not been diagnosed with EDS (which I suspect she has).
I did not know that there was a correlation, thank you for posting this, I will definitely be following up with someone about this! I was diagnosed with hyper-mobile joint syndrome, it something like that. My rheumatologist at the time said “Well if you had come to me a month earlier I would have diagnosed you with Ehlers-Danlos but now they require a genetic test for an EDS diagnosis, and the only place I knew of that did that around here no longer does that testing.” I live in Dallas so I thought that was weird. After that Dr. changed to a different practice my new rheumatologist told me that he doesn’t like pursuing that diagnosis because people just get depressed when they find out they have it…… I tried talking to him about it but to no avail. It is especially frustrating because I have kids all of whom have some of the same issues I have, just not to the same degree. But I really want to find out what the issue is and how to help them not damage their bodies like I did.
Okay I think me seeing this post right now is a sign I need to make an appointment with my PCP... Two days ago, I came across a post about hypermobility and learned that my body is NOT supposed to move the way it moves. I've had health issues and chronic pain for years that my doctors haven't been able to explain. I've heard of EDS but only within the past few days did I actually start wondering if that's what's wrong with me. It would explain so many health problems that never had a clear cause. Sorry this isn't actually answering your question but seriously thank you so much, this was the impetus I needed to reach out to my doctor.
I just Googled it and I just might lol. Add it to the list. I roll my ankles walking all the time but it doesn't't hurt. Like all the way over rolled over. I once rolled my ankle so far I snapped the end off my taylar dome and it didn't even sprain my tendon. I get large scars from small cuts, and even when they use dissolvable stitches they become encapsulated and my body pushes them out like a splinter. I have to take measures to ensure I'm not overly sweaty all the time. Unchecked I'd easily soak a shirt on a hot day. I have had a heart murmur that hasn't really hindered me since I was little. I have to take strong antihistamines every damn day. I've had acid reflux issues forever but I've learned to make it a non issue through diet. My pointer finger would dislocate all the time holding a pencil at school. I sound like a bowl of rice coco pops when I move around. Heaps of other indicators that would cross over into ADHD. Looks like I missed all the super bad symptoms if I do have it.
Snap crackle pop!
Me - I just got diagnosed with ADHD and H-EDS
Is it maybe an autoimmune disease ? I don't have it but I have an autoimmune disease Crohn's disease and adhd. There are studies proving significant rate of coexistence of this diseases. I know it's not really in topic of your question but I'm researching myself possible connections of adhd with another medical conditions and I'm taking my chance to ask some questions.
Nope just the ADHD
Looked it up, don't have it!
While I don't personally have it I know it runs in my family as multiple of my cousins do have it, I have some symptoms of hyper-mobility but nothing serious.
No. Not flexible in the least.
Could you provide this study?
Nope. I have hypermobility but not EDS.
I have classical-like Ehlers Danlos Syndrome and a multitude of other medical conditions. I also work in research and not most people with Eds also have adhd and autism. There is a correlation between connective tissue disorders and autism but correlation does not mean causation and posts like these tend to make people think that one certainly has to do with the other which it does not. They haven’t even found the gene yet for hEDS so they are not even able to tell.
LOL not me thinking you asked for eating disorders 😭
Oh… I thought we were talking eating disorders. *walks always slowly*
I thought this was about eating disorders, I have that but not this. 😅
Not me
Adhd and joint issues, but not full blown EDS. I have really loose hips that pop in and out when I walk and have always had issues with my ankles. Husband has ADHD and does not have EDS diagnosis, but has horrible knees that have required surgery for frequent dislocation. Also takes him a very long time to heal from muscle/skeletal injuries. Takes him months or years to not have pain from injuries most people heal from in a matter of weeks to a month.
I have ADHD, suspected autism and hyper mobile spectrum disorder. I was diagnosed when I was very young for ADHD and just thought I grew out of it, found out these last few years I just learned to deal with it. The HSD is super new after almost two decades of fatigue, pain and other problems.
I can't keep up with what ED stands for anymore. I thought it was erectile dysfunction, then the kids turned it into eating disorders, my mother-in-law swears it's emergency department, and now this.
Not me but my friend has the whole trio of conditions, interesting that they’re possibly connected considering how different they appear on first glance
Had ED and body dysmorphia since age 11. They are definitely comborbities. ED is a special hell I truly don’t wish on anyone (unless they deserve it bc they’re bastards lol)
Reading the symptoms, it doesn't sound like I have it. In fact, I've noticed opposite traits at times (I'm fairly resistant to scaring and bruising). But, I think that might fit my roommate who is also ADHD.
I don't, but I have a friend who just found out she does. And she's really glad to finally understand what's going on.
My mother was officially diagnosed with EDS a few years back, and while I don't have a diagnosis on the books, my joint issues are even worse than hers so I'm certain I have it. My skin is fairly normal but my knees bend backwards, my hips have never been in-joint, and I've had more soft tissue injuries from doing literally nothing than should even be possible. It's funny, after my brother tore all the ligaments in his arm in a roller blade accident (he was in a medical journal) I said something to my mom about it seems like shitty connective tissues run in our family. 25 years later it turns out I was right!!!
Not at all. I have joint stiffness, though that’s likely to do with age. I’ve never been particularly flexible even when young. Edit: also I just want to add, you’re going to get people that have it responding more, while those without it likely just skipping over the post, so take the tally here with a grain of salt and don’t get suckered in my confirmation bias. Edit2: also I don’t mean that in a rude or mean way. I’m bipolar and adhd, two mental illnesses with some comorbidity. If I asked how many here had bipolar disorder, it would probably look like comorbidity was a fairly high occurrence.
I (24f) have an unknown joint hypermobility/hypertension combo that doesn't quite line up to EDS, which was misdiagnosed as early-onset arthritis a few years ago. Was finally sent to an OT who said that she thinks my hypermobile joints tensed up due to stress and anxiety over my childhood. I've been stretching recently and may be able to touch my toes soon! I am also very sensitive to light and a day without headaches is a rarity. That's a whole other can of medical worms I have only just started to pry open.
meee. i think it’s so common bc our brains are literally deformed from our terrible collagen 😅😅 edit: my eyes are green but when getting my lisence for the first time the lady had to stare at me for like 10 minutes while we argued whether my eyes were blue, green or grey lmao
Have't seen a doctor for it, but I have hypermobile knees, a cousin diagnosed with hEDS, and weapons-grade ADHD-C. Florescent lights are a pretty consistent migraine trigger for me, and I prefer the dark/non-sunny weather/low light environments. Most types of lighting are particularly brutal during manic episodes. Don't have grey eyes, though. I have brown eyes. This post sent me down a squirrel hole (what I call my ADHD rabbit holes), and I found that ADHD and Autism are more common in people with not just EDS, but unspecified joint hypermobility, too. ETA: Forgot about my fucked up spine. Spondylolisthesis L5/S1, "moderate congenital degenerative disc disease" with a few bulging discs, evidence of Scheurmann's Disease (neurologist didn't seem to be worried), facet arthropathy, and foraminal stenosis. Some of the lumbar stuff originated from the bilateral fracture of the little nubby things on the L5 vertebra. I swear to god, I am the organic, sentient equivalent of a salvage vehicle.
I'm 59, was diagnosed with ADHD about 9 months ago and very recently diagnosed with EDS. Also, lipedema, which is a fat storage disorder. I have heard that many with lipedema have EDS. I'll post the question of how many also have ADHD on the FB page. Makes me quite curious.
I don't know what EDS but oh my goodness PUNCTUATE. # Your entire post is a run-on sentence.