same and since i was 20 my knees hurt and i went to the local clinic where one of the doctor said the same and laughed at me (and after that lots of doctor said my pains must be psychological) , since than i cant trust in public healthcare.
Lol same but my husband says it. And when I was having my acl surgery, my doctor found I had arthritis in my knee. It was last year when I was 30. I was like what 30 year old has these issues!? Then now I know...EDS
Hello! It would be super helpful if you or anyone else reading this could point me in the direction of how trouble breathing without asthma is possibly connected to EDS if it is. I have not come across that yet and it would be very relevant to me.
Thank you very much. No one with a disability should ever be discriminated against, and I wish the world was more knowledgable about visible and invisible illnesses. Hopefully making videos like this can make a difference.
Did either of you have horrible "growing pains" nearly daily? I got them almost every day, mostly in my legs, and they were so, so painful. I have very few clear memories of my childhood but (sadly) one thing I can so clearly remember is just how bad those pains in my knees and ankles hurt. It was like someone was grinding a screwdriver into my joint. My mom took me to the doctor when I kept waking her up crying from the pain and my doctor said they were just bad growing pains and I'd grow out of them. I haven't grown an inch in 6 years, still get these pains on a weekly basis ... so yeah, definitely growing pains. :/
I didn't get growing pains, but I have heard that a lot of people's EDS pain was passed off as growing pains when they were younger. If you do have EDS, it may have never even been actual growing pains and definitely still isn't if you haven't grown in 6 years.
I did, my hips were so bad from time to time especially when I was in 5th grade, that I could sometimes nearly fall because it would suddenly hurt too much to put weight on a leg in mid step...
Claire Jeske I wound up in the ER at 12 due to waking up crippled one morning! They told my parents then that I would PROBABLY grow up and have some type of arthritis. Then, Scoliosis at 13 and so on...I am 52 now and STILL fighting for a diagnosis in addition to Fibromyalgia.
I am comforting my inner child and validating her through this video. Being told “it could be in your mind” really affects you. You doubt yourself. Now I know I was right, I was sick. I was in pain.
I can completely agree with the thought of “is this in my head”. I grew up thinking everyone dealt with the pains and sickness I dealt with because I was always called dramatic! I was recently diagnosed with gastroparesis and I’m thinking it could be related to a connective tissue disorder that I’ve missed for my whole life! Thank you for spreading awareness!
Wow, I did not realize how common the handwriting (or the hand raising) thing was. I hold my writing utensils funny too - like, I have two fingers below the pen/pencil, and then use my thumb and other two fingers to hold it in place, so I can actually be able to control it.
Oh shit - and I have the under-eye discoloration and lines! That's kind of crazy. (Also, I was able to trace my veins all the way up my arm, so when I got bored in class I would. People doodled, I didn't know I was so weird...)
I didn't know either! I too have very visible veins on my upper and lower eyelids. I haven't been diagnosed yet but I am almost certain my daughter and I have either heds or some sort of hyper mobility disorder. I went to my doctor and he had never even heard about eds, got a referral to a physiotherapist. I am just so scared not to be taken serious.
I had someone try really hard to get me to "admit" my husband gave me black eyes when he didn't. The ladies just knew I was lying about my black eyes. I was just sick, not physically assaulted.
I had a lot of issues as a kid with my handwriting and "growing pains", dark circles around my eyes, and just pain pain pain all the time. My doctor told my grandma that I would grow out of it, I was just really flexible. At 15 I was officially diagnosed with EDS hypermobility. I went through physical therapy for two years with almost no progress. I almost didn't graduate highschool because how many days I missed. I'm 26 trying to deal with the pain and loved ones not understanding what I'm going through. I have so many of the same symptoms as you guys. Frozen joints are the WORST. Thank you guys for making this video. More people need to see the signs especially in their children 😘
Omg, I'm recognizing so many things that I didn't realize weren't normal and were totally EDS-related when I was a kid. Writing, the too-tired-to-hold-your-hand-up thing, crappy posture, back and joint pain (for some reason I thought that was normal?)
I think that the hardest thing is to adults understand that we are in pain all the time, and as they just move on, like it is nothing, we start to believe that it is nothing too! I don't have EDS, but I have a lot of things mentioned in the video, and as I am so used to that I don't even realize that I am feeling it, I only remember about it when it is so bad that I need to treat it in the hospital :P it sucks
Omg, can't believe you mentioned the walking thing. I used to get that, although thought it was just a self-conscious thing. But it was like 'how do I walk again?' It felt so weird!
Also did anyone else ever like being upside down? It was a joke in my family if i was on the couch they would always see my feet first above my head. Maybe i was just weird
Cluna Ssssas Hi yes I really did. Probably something to do with normal gravity being reversed on your joints and blood flow going back to brain and heart (if you have postural orthostatic tachycardia syndrome with EDS, it is recommended to raise your feet above your heart often). I’ve always been a bit of a monkey though so the upside down thing was never questioned lol
I loved being upside down! As a kid, I would dangle my shoulders and head off the bed while lying on my back. The wall was only a couple of feet away from the bed, and I would flip my body up so that my hands and knees were on the wall with my shoulders still braced by the bed so my head could dangle with the rest of my body above it.
I was just diagnosed with Eds, and I relate to everything in this video so much but especially the forgetting how to walk. Sometimes I feel like I’m walking so strangely that other people must think I’m drunk or something. I think that one of the weirdest things for me to realize was that people without eds really don’t have to constantly think about how to move their body to do things, it just does it. But I have to constantly engage all of my muscles just to keep my hips in place.
yeah I know exactly what you mean. Sometimes I'll be standing and I feel like my hip wants to kind of pop out (not sublux though, like it wouldn't be painful), and I have to engage my muscles to prevent it from happening, whereas it would never happen to someone else.
Yes and when I’m at the pool and my friends are just walking without shoes My feet are like how am I supposed to walk lol and also I get asked a lot why I’m limping or if I’m hurt
Yep, just recently I've been diagnosed with dysautonomia, but always had these hyperextention issues, even to the point I pulled my meniscus in my knee apart. Dark circles, heat sensitive, cold sensitive, stiffness, aches, pains, arthritis.....
You guys are amazing! Your describing my school life!. School days were so hard.." I was the hypochondriac" according to the teachers. It is so traumatic to go through something like this and suffer in silence when those around you are unaware. I think what you are doing is amazing. Its definitely not easy to live with but I think we all rock, the fact that we do so well!! Good on you guys for spreading , sharing and raising as much awareness as possible xxx much love xx
I’m literally in tears right now as this is so relatable. I am almost 40 and I’ve been in and out of the doctor’s since my early teens. I am wanting to go get officially tested for EDS because it sounds like everything I’ve been suffering with since childhood. It’s getting worse and some days it’s just unbearable. I’ve had everything checked, had all labs done, visited psychiatrists/nutritionists/specialists, put on antidepressants, been told I need to sleep more/eat more vegetables/exercise more/lose weight/drink more water. It’s so unbelievably frustrating when no one listens or believes me. If I don’t have EDS I have something else going on because I feel like my body is falling apart.
I have found that going through menopause has made things worse for me. I haven't been diagnosed with hEDS but I am on the hypermobility spectrum. I watched a specialist on TH-cam who said puberty and menopause can cause changes because hormone changes can effect EDS.
I've cried in all your videos, for real. Like, everything you guys said. I feel sometimes so alone, a weirdo. I can't complain with my doctor anymore because he just says that it's normal. I'm doing pilates and the teacher gets mad if I can't do a thing or my shoulder looks like it will fall out. I injured myself on my back one year and half ago. I was in bed for 5 moths in pain, crying and I couldn't sleep because of the pain. After, I starded physical therapy, and more pain. Now, I still can't seat for more than 3 hours, after that I need to lay down. And even now, people look at me like I'm creating all the pain, like I'm lying. I need a doctor and a therapist that I could talk without being judge. And I really need friends with eds, because I feel so alone and sad.
ugh I'm so sorry to hear all of this...it's really not an uncommon story in the EDS community because all of our blood tests look fine, so many people assume we are fine. I hope you can find a new doc that will help you. No matter how many docs it takes or how discouraging it may seem to be turned down by doctor after doctor, there will be someone who can help...I saw like 30 doctors and nobody knew what was wrong or how to help.
@@IzzyKDNA “seek and you will find”. The pain I feel knowing that means seeking the answer my entire life! But I am certain the Bible means exactly that!
Omg! The holding your hand up in class issue cracked me up i would never have thought of that being an EDS thing, but so relatable! Feeling like an old lady moving as a kid aswell... i used to joke about it but seriously that's how it feels. Wait under eye colour is part of it? I still have soooo much to learn about all this ..
I have under eye discoloration too! As well as over the eye. My HS teacher thought I was smoking pot and partying all night, even called my mom with her concerns. I never did drugs or partied until well after HS. Soooo frustrating.
I’m being diagnosed with Eds right now and watching this, I have NEVER felt more validated in my life. I’m sitting here at 4am with my service dog and I’m balling my eyes out and she’s like duuuude chill u need to put compression socks on 😂
I have heds and had basically all of this as a kid. I have the same under-eye circles as Jullian, and once I was diagnosed they finally made sense. I could never figure out why you could see the veins under my eyes before.
Does anyone else have bone pain as well? I have pain where you can press against my muscle or my skin and it’s fine but if I press against my bone it hurts. And I can have bone pain when I try and walk if my leg bones hurt at that time.
Not really for me. In certain places on my body I can push down and it hurts, like the inner side of my knee, but most bones don't hurt me when I push down on them. Hope you can figure out what's wrong / anything that can help.
I have bad bone pain, started with just my calf bones. Now it's all the way up into low back, and starting into midback. I have chronic vitamin D deficiency (crazy low), which apparently is common in the EDS population.
i get such bad pain in my bones when i walk especially in my shin but they believe it has something to do with my scoliosis (though my scoliosis is fairly mild)
Absolutely agree with the inability to handle extreme temperatures. 72 is the only thing I can do anymore comfortably. Colder and my feet and hands to numb (feet way worse, numb the entire winter in WI), 75+ and I can't stop sweating... I didn't know it was EDS related, thought it was meds to control other symptoms. Took decades of symptoms building to the point I was disabled, and still took a few years to receive a diagnosis. Just being ignored as a drug seeker, delayed diagnosis and treatment for a solid 5 years. The local small town clinic/hospital wasn't adequate to diagnose or treat EDS. To this day I still cannot get a GP that has heard of EDS! I ask for a doctor that is familiar with it, and get told to make an appointment with a random doctor, and after 8 months waiting for the appointment you get there and they ignore the questions related to EDS... I travel hours for pain mgt. for years just to get any treatment, no regular Dr., tests/monitoring, treatment other than pain relief. Having an invisible disorder sucks!
Ugh I'm sorry to hear this about the doctors and not being able to find someone o treat you! There ARE docs out there, and it sucks, but you might just need to see like 50 more until you can find someone to treat you. It's so unacceptable and ridiculous that it's the reality. Wishing you the best!
I’ve never been able to handle big temperatures! Sweat at 72°… Over the years Raynaud’s has become more & more of a problem + all the other symptoms…. & somehow only got “Benign Hypermobility”! Trust me when I say there is nothing benign about it. I don’t understand why Drs don’t seem to want to do their jobs. I’m so tired of the pain & being ignored.
Well, this is me. I've also spent the last 4 years or so suffering through Northern WI winters. It doesn't matter how many layers of gloves I have on my hands they often go numb while outside, and it's like 30°F out and longer periods of time make it so much worse.
This is amazing. I look back on my childhood and realize all the things that I considered 'normal' are not at all normal. I never thought about it or realized it. I learned to push myself through the pain because everyone else was fine so I assumed they felt the same way and just dealt with it. It wasn't until I was much, much older that I realized these things aren't normal. Other people aren't feeling this pain or having these issues.
I used to think it was normal to be in pain because I'd say something to my friends and they'd be like, oh yea I get sore after working out or xyz activity too, it's normal. So I just figured it was normal, or due to old sports injuries as I got older. My pregnancy with my twins is what finally made it clear that my pains were not normal, and not simply due to old injuries from childhood, also things got so much worse. But still took about another 5 years, a back surgery, and a cancer diagnosis before finally getting diagnosed with the chronic illnesses (including EDS) that I've had since childhood.
I’m trying to figure out what’s wrong with me. Have u ever did a vid? I’m seeking help from others bc I can’t get diagnosed. My last pregnancy was very painful. How did u get diagnosed?
@@Nuverselive I was very lucky. I went to see a rheumatologist to confirm my lupus diagnosis. The doctor I saw happened to be very familiar with Ehlers-Danlos Syndrome, and after my clinical assessment she diagnosed me with both Lupus, and Ehlers-Danlos Syndrome. I've had a slew of other diagnosis since then, but they are all basically complications and comorbidities to my 4 main conditions. I have not made any videos. I'm also not a doctor. My advice is from a patients perspective, learn to really advocate for yourself. Don't let a doctor brush you off. Do lots of research, stick to peer reviewed and other official publications so that you are learning accurate info. If you think you have EDS, they published the updated diagnostic criteria in 2017, and you can find it online. Go through and see if you meet the criteria. If you think you do, bring that info and anything you have to back up your symptoms to your doctor and ask them straight up if they can diagnose you, or if they need to refer you to someone who can if they are not familiar enough with EDS to diagnose you themselves. But seriously, bring in whatever research you find that you think is relevant. Ask the doctor to help you sort through what fits your symptoms. If you have trouble advocating for yourself, or remembering stuff; you may want to bring someone with you, to help you cover everything and stay on topic, as well as advocate if needed. Good luck.
My twins broke me! I've had 6 lumbar ESIs, medical branch blocks, and nerve ablations. My back still hurts constantly. My twins are 6 and on the spectrum, so surgery is out of the question right now. Did surgery help your pain?
You needed back surgery too? Wow! The worst part of needing the spinal fusion for severe severe scoliosis is that I was told I had slight scoliosis as a kid, but not bad enough to do anything about. I was medically neglected anyway so we never went back, but on top of that I had many undiagnosed genetic disorders causing my condition to degenerate very rapidly. So basically it could’ve been prevented if we had ever had it looked at again, because I certainly would’ve been given a back brace all those years ago.
I decided to scribe symptoms....Sweating...hyperflexibility, temperature deregulation/fluctuation issues, flat feet (I do not have this), frequent breaks, being in pain more than others, emotional pain, brain fog dizziness, missing so much school and being absent all of the time it seemed like, translucent skin (purple under the eyes), higher pain tolerance, not noticing 24/7 pain becoming immune to it (until you have something physically on you like a bandage, then people start to believe that you are actually in pain, "forgetting how to walk" (or what I say...."feeling like Bambi on my legs"), pain with laying too long, muscle tightening/spasm, looking into early.....
So comforting to know you aren't alone. Even family can't fully understand and get skeptical like you always have some sort of excuse. Thank you izzy for you channel. Even tho I'm nearly 10 years older I'm just working on my diagnosis of hEds and now my life finally makes sense. All the things. From pain to walking to just putting on my public face and being a different person just to avoid having to try to explain what most people would never understand. Thank you sweetie! I love your channel.
I have multiple chronic health issues which are mostly summed up with ED. I also have issues with my col6a3 and col27a1. I was terribly abused as a child, so got used to physical pain from an early age. Any complaints regarding my joints and pain was brushed off as 'growing pains' and over time I've utilized INFJ stoicism . I truly wish I could talk with someone about it and not feel guilty for making them feel bad for me. My whole body hurts all the time, and I would love to have an illness buddy.
My neighbor just identified this in me. I’m going for my first doctors appointment in a week or so. It a validation of my entire life. Literally every day I think of more things that were caused by it. I’m 22.
This video is so validating. I really resonated with your conversations about missing school. I would also miss weeks at a time and everyone assumed I was faking illness. I essentially missed years worth of my education due to these symptoms and I am so glad for content like this that puts me closer to a diagnosis. Thank you for this.
I can really relate to this! I’ve had a lot of similar experiences I’ve been discovering a lot of things from when I was a kid that were probably signs of EDS that never got noticed or were misdiagnosed... I also did ballet, dance, and gymnastics as a kid. I would show off by doing some weird contortions and sit in weird position without realizing, etc...
This is my life,but my GP was telling me ,I'm just depressed!lol, It took from 2013 to 2018 finally being diagnosed! but I never knew about dark circles under the eyes ! There is no concealer in the world that would hide my ones!
My normal doctor said it was anxiety (I'vebeen seeing her sinceat least 2010)... I've been seeing a psychologist and he was like it's not anxiety get a second opinion- saw a new doctor and she said "that's not normal, we're gonna figure out what's wrong with you". Did you know your armpit bone popping out is NOT normal like I've been told for 24 years...
I'm 43 now and I was finally diagnosed at 41, a few months after the new criteria for hEDS came out. For decades I was the weird genetic mutant with no real explanation for all the pain. And the accusations of being a hypochondriac. Plus I am still realizing the weird things I think are normal but my husband or friends are flipped out by.
I was diagnosed at 42, like the girls in the video, I thought everybody had all these constant aches all the time, and had to fight their reflex to stretch in the morning cause it might pull something out of place, etc.. We didn't figure it out until my teen kids were showing signs and I took it seriously, educated myself, and had it looked into properly. Our generation just glossed over so much crap we didn't have to suffer through without help.
This makes so much sense!!! My hips would pop in and out of during scissor kicks!! And it was treated like it was normal. And I’m ALWAYS IN PAIN. Also I can lick my elbow... and my knee always hurts like going up the stairs and I have no idea what to do with all my pain and what to do to get better. Im 22 and I recently got diagnosed... and everything you’re saying makes so much sense. I also have ADHD. I need to see a physical therapist
WOW..sounds like I'm listening to my own childhood. So validating to hear how similar those of us with EDS journey's are! The validation is so comforting & so good to be reminded since I've got an 11 year old who has been preliminarily diagnosed with EDS
It's funny how much of this I can relate too! I was told my hand writing was really bad because I am left handed but it was purely because of how painful it was to write! Keep making stuff on EDS! Its such a neglected syndrome x
So much of your childhood stories (and several other videos I’ve been binging) hit so deeply for me. I’ve wondered my entire life if there was an answer for my body. I’m definitely going to start the fight to get an answer again! No doctor has ever bothered or tried for me when I’ve tried in the past. Wish me luck!
I have Ehlers Danlos as well and I am so thankful for the rise in awareness and research. My first pediatrician completely dismissed all of my symptoms from my GI issues to my hypermobility to my chronic pain to my bouts of tachycardia and passing out. It upset me so much because she didn't even try to find out why I was having these symptoms. I luckily got a new pediatrician over a year ago and it took her meeting me once for her to suspect Ehlers Danlos and she referred me to ortho, hoping they would also address my ankled and feet. He also suspected Ehlers Danlos and on top of that, he prescribed me SMOs (took my measurements and impression and sent them, and me, to an orthotics and prosthetics specialist). By the end of my consultation, he told me that I did, in fact, have Ehlers Danlos. I have also been referred to a geneticist because he wants me to have genetic testing done to determine 100% that I have hEDS and not another form, which I respect and understand. I did get my SMOs, but we later found out that I needed a lot more support and also have hypotonia and bilateral foot drop. I now have AFOs and they even have dinos on them! To everyone who has participated in raising awareness for Ehlers Danlos, thank you. If you have any questions I am more than happy to answer them. My Instagram is amber_nicole_dean and you can easily reach me there.
My knees have been dislocating for forever, I’ve had so many reconstructive knee surgeries. And finally at 17 my doctor is sending me to an eds clinic to get testing. These videos validate all the pain I’ve felt
Thank you so much for this video! I am 30 and in the process (over the last several years) of finally getting an EDS diagnosis. The things you talked about resonated so strongly with me that I cried because I've never heard anyone else talk about what I dealt with growing up (and still now).
I have not been diagnosed with Ehlers Danlos but my pain management specialist believes I have ED. A lot of the things said in this video really hit home for me and I didn't expect it to.
@@DJogdog ED also stands for eating disorder, I know that’s not what op is referencing (they meant EDS) but pls don’t discredit other people who say they have an ED. Doesn’t always mean what you think it means :)
@@DJogdog how does having the name Hannah mean they can't possibly have an ED what the heck? besides context makes it incredibly obvious they meant Ehlers Danlos
I genuinely relate to every single thing that y'all said and I'm almost crying finally relating to someone else. Everything from the wrapping painful joints to hating bumper cars to not even realizing you're in pain. I just feel seen and I hope that my doctor will take me seriously
Omg, I am so complexed by my bags under my eyes since I'm a kid because they are so different that the one of everyone I know and I never suspected that it was EDS until you point it out, wow, thanks for the info, will help a lot with my perception of them ! Mines are really like the ones of Jullian. I did ballet for 7 seven years and same, I really shouldn't have. And I identify so much with everything you said about sport class, it was awful.
This video is a huge eye opener for me. I've had so many of the same experiences in my childhood, and some i had no explanation for. I'm not diagnosed, and I never even knew about this condition until I came across a tutorial for drawing hands where someone pointed out that the hands drawn were hyper mobile, which led me to google that and discover a new word for what my hands can do... And my arms, and legs, and feet, and at one point my neck. The arm thing! When you hold your arm up in class for a question, i didn't even realize that was a sign. My elbow would start hurting within a few seconds of doing that. The over heating too!! I've always been a furnace, and I cannot tolerate the heat very well, which is ironic because I can't tolerate the cold either! The flat feet too. Mine are so flat, they pancake. I can't believe that could be a sign of EDS. Light sensitivity too! I could NEVER do the light tests at the optometrist because it hurt so badly. The eye bags thing too, i always noticed how purple mine are and i just thought that was due to my insomnia (which it could be, i'm not sure!). Do you happen to have IBS as well? I'm wondering if that could be connected to EDS somehow. When you sit up straight, does your spine start to ache? I have bad posture because that happens to me. I'm going to approach my doctor about this because now i'm wondering if theres a possibility I may have EDS.
I can't tolerate cold OR heat hahahhaha...it needs to be a perfect 73°F hahaha. I dont have IBS but i have gastroparesis...it makes eating really painful and I get nauseous all of the time. IBS, dyspepsia, and gastroparesis all go along with EDS sometimes, though of course IBS is common in the general population too! YES MY SPINE HURTS WHEN I DONT HAVE SUPPORT OMG OMG OMG SO BADLY!!!!!!!!!! i really hope u can get into a doc to have them test you for it. lmk what happens!!
The weird thing is that I have high arches - but they always hurt when I was a kid and I refused to wear shoes. The more I look, the more symptoms I see.
OMG, I just found out about eds yesterday. It explains almost everything I've been going through. I live in a tropical country. The heat is kinda killing me, but then when I am in a air-conditioned space like a shopping mall, it's too cold for me, my lips start quivering, my skin turns to purple. Optimal temperature would be 28-29°C
Wait I can't tolerate heat or cold at all. I can only exist at 73F. I'll pass out in heat and in cold I violently shake in Texas cold. Not no damn maine....TEXAS
this video is making me absolutely sob. i havent been diagnosed with hEDS, but im currently going through everything you guys described during your childhood years. ive always felt so isolated being the only person with these problems that i knew. thank you for making me feel a little more normal❤
yes!!! The body stiffness is brutal! I just kept thinking it was in my head because after starting to move and staying in movement it got better...but if i stop then the whole process starts again. 😏🙄
Being raised by disabled adults who didn’t believe I could possibly have anything wrong with me has been the source of most of my problems growing up, because I’d never be taken to the doctor. I’m still trying to get a diagnosis, but after hearing your experiences, I’m like 99.9% sure it’s EDS. Thanks for this
I relate to every single thing y'all say in this. I was diagnosed in December and it's ridiculous how many things from my childhood I can attribute to EDS!
Love this video! The first pic of you holding up your leg?...I did that in a complete split against the wall. 😂 I had ALL the problems you had. But also SEVERE leg pain. I still do. Both my eds sons had it too. Thank you for doing this video!! 💖
Oh and I used to do backbends and I would lay on the ground and push myself up into a back bend. I also loved the high low bars. Now that I think about it, I should have had so many broken bones from my sheer clumsiness but that's the beauty of EDS, it just stretches out and goes right back (insert sarcasm here.) Oh I broke my pinky and didn't know it but since it didn't look right or feel right, I decided to have it checked and sure enough I broke the middle bone. Also my ankles have given out so many times, I would flail around so wildly just to be able to fall without busting my head open.
Interesting, is not breaking bones a common thing with EDS? I don’t know whether I have it, but I have had a lot of signs. And I’ve definitely had some situations that should have resulted in a big injury (bone-wise especially) but usually just ended up in a dislocation, which for me is super common…
I used to "jump rope" with my arms as a kid to impress my classmates, lol. In hindsight - terrible idea! My shoulder would fully dislocate a lot during basketball. I loved the sport so much though, I would put the joint back in myself, sit out the rest of the game, and then back in for the next game.
when yall talked about the constant pain, I cried. Bro, that's what it is and so much of the time I just feel crazy but theres never a time where something doesn't hurt. I can't imagine how much it's contributed to dissociation...
There are some more with me. I put my feet pointed out to sides instead of pointing forward. I always used not to lift my leg up high enough while walking, relatable?
some people with EDS have foot drag! I thought it was because of nerve damage due to EDS but not positive; i jut know it's related! My feet turn out when I lie down on my back because everything is loose and they just turn out! But not when I'm walking
I didn't get diagnosed EDS until I was 51 I'm 53 now. Some days I have a really hard time of it. I don't have anybody to talk to about it so I try to get as much information as I can online listening to webinars and videos like this so I thank you so much posting this now all I need to do is find that person that understands for emotional support because I sure feel alone kind of it. Thanks for letting me wine a bit
So, I'm 14 years old and my hands do hypermobile things and I thought it was a normal thing because I could also wrap my arm around my neck easily. I never knew that was actually EDS because I would just be funny and show people and freak them out. I showed my mom and she simply said, "So that makes sense."
Yeah it could possibly be EDS! do you deal with other issues like joint pain, stomach or heart problems? Some people are just really flexible but don't have EDS, so if that was the case then I wouldn't want you to worry :)
@@IzzyKDNA 14 and flexible as well as them. I am currently trying stuff for injuries and I am unsure if I do have eds or not. I have coeliac disease (autoimmune disease) and get joint pain in the the mornings, especially in winter. Could this be related to eds or could I just be weirdly flexible? Irdk
I had all of these as a kid omg I remember always sitting out in gym bc I would twist my ankles or sprain my wrists all the time I even almost failed gym class in grade 8 because that's when I noticed I would have subluxations in my ankles. I would even fall over my own feet or even into walls lol. And the worse thing was always being told by drs it's just growing pains like if it's just growing pains why am I not 8 ft tall????? And even before 3 years ago my knee did some weird shit and it was locked and i could not move it passed 90° like it was just stuck there and i went to 4 Drs before being taken seriously. I am getting tested for hEDS soon because I have the POTS and IBS symptoms of hEDS but I was only diagnosed with hypermobility syndrome when I was 11 and never even knew what EDS was till about a year ago
Oh wow that's a strong history of hypermobility! Honestly, sounds like a similar journey to mine. I feel like every EDSer was told their pain was just growing pains, even when they were completely done growing. like ummmm no. Hoping you can get the diagnosis, if it's what you end up having!
Listening to you guys talk about missing school and being hard on yourself honestly made me cry. My vice principal had a strait up fight with me telling me that my joint pain was fake and I was skipping school. I’m a senior right now I’m 18 years old and right now my doctors are telling me I can either treat for juvenile arthritis or we can spend money we don’t have to do the genetic testing. I’ve been diagnosed with hypermobility but that’s about it at the moment and money is tight. When I was about 12 I discovered I could do the splits and leg lifts and my joint pain got worse and worse. I found out I could contort my hands and I could stand on my toes with my toes curled upside down. I developed back and hip pain and started seeing a chiropractor twice a week for years. It wasn’t until my doctor mentioned EDS that I started looking into it and discovered my stretchy skin, joint pain, flexibility, flat feet, and long fingers could all be related. I’m still in the middle of it right now but just hearing you talk about missing school before you had answers and now that you have answers made me cry. It’s something I’ve struggled with every year of school. I’m sick constantly and I hurt all the time. It just resonated with me. Thank you for making these videos and showing that I’m not alone in my pain
I'm so sorry you're dealing with this. I think I can speak for Jillian and say that we both understand. Hopefully a doc can test you on the clinical hEDS criteria and give you some answers. Wishing you the best!!!!
It’s just been kinda crazy the last month. My guy has started acting up, I’m bloating like crazy and the pain gets worse and worse every day. I do have an appointment with my GP tomorrow to get Recommended to someone closeish who specializes in genetics or EDS. Hopefully it goes well. But it is seriously comforting knowing that other people around my age deal with these things to.
I just found out I have H-EDS and this video made me cry both sad tears and happy tears because everything they are saying is so familiar and I struggled for so many years with always being in pain but never knowing if it was normal and never feeling like I could talk about it. I went 22 years without answers and I’m so glad to finally find out that I’m not alone.
I'm so so so happy you finally got a diagnosis. It's so validating! I'm glad you were able to relate and I'm wishing you all the best with your health now that you know what the problem is!!
I know this is an older video and you might not see this, and everyone here seems to be on the same page lol. But you both deserve to hear it again: thank you. Thank you x1,000,000 for speaking all of this into existence. This is the first time I've ever heard of other people having these specific experiences. I had to pause a lot to collect myself and I think I made it to the last 30 seconds before I burst into tears 😂 Thank you for being so open, and validating the things so many of us have been through!
"...accepting that maybe I was a little too hard on myself in the past and that it really wasn't my fault. I didn't choose (this). And I kind of forgive myself for being so hard on myself when I really should have been more kind." This is something that many, many people who went through situations that were out of their control need to tell themselves. Even adults go through stuff this way and beat themselves up, but it's especially hard when it was during childhood and you just had no way of knowing it wasn't normal and you weren't just being weak or a failure somehow.
I wrap myself with bandages and use braces for the same reason, I get a little relief with them, but also it’s a visual cue to others, that I’m hurting. It helps a lot when I go out, with things like groceries or people letting me cross the road and just people being more considerate.
I started experiencing widespread muscle pain when I was about 9 years old. So many fruitless doctors visits. So much suffering. I didn't know what to think about the pain when I was that young. I thought I was gonna die in my sleep or something. Iffy fibro diagnosis at 17 years old. I never believed it. It all kind of makes sense now legitimately everything I've ever complained about... But I'm scared to go see another medical professional and just not be heard.
I'm soon to be 56 yo.. a lot of my symptoms started about 10 years ago.. I got a fibromyalgia diagnosis but have always felt it was something more.. didn't know if all symptoms were related or not. Recently I started taking my blood pressure and heart rate.. and like you said in 1 of your videos it's only measuring your HR & BP for that moment.. so I picked up a pulse/ox and my HR goes from 55 to 100.. lying down to standing up.. I've been short of breath lately & presyncope and pain and fatigue have been ramping up.. swollen feet and hands Guess I should make an appt. with my Dr. I just want to say your videos have helped me a lot. Not sure if I have eds but probably pots.. I feel bad for all of you that have had to go through this at such a young age! My heart goes out to you.
Oh my gosh the purple feet/cold extremities thing! And having Hashimoto's on top of it... If my hands or feet get cold in the winter (no matter how many warm clothes, gloves, socks, etc, I wear in the winter), they are damaged for months. It takes well into spring before they feel normal again. And the initial pain from being cold takes hours in the warmth to reverse. But the constant pain from whatever damage happens is heck to deal with the entire winter, every winter. And I live in cold Sweden. :(
Oh boy. Thank you for posting this. I am a 37yr old wife and mommy of 3 young girls ....6, 4 and 18mths. I have the hypermobility type. The pain. CONSTANT PAIN...... I must say. One cool side effect was fast labours! Ok. Thats the only perk! But thank you for posting this!!!💕
I have found that I have all of these symptoms plus others not mentioned here. Just recently, I have realized how many near death experiences I’ve had with illnesses. I have been septic, had severe pneumonia and was hospitalized for 2 weeks, had shingles a month before that and severe strep a month before that which also hospitalized me for a week, had epiglotitis where I was told that had I not come in (to the ER) I would have died that night. I have never known somebody to constantly be so sick as I am. And it’s gotten to the point where I fear going to the ER because they might think I’m a hypochondriac (but they are the docs that diagnose me and hospitalize me). I have just learned about EDS, and I am making an appt. with my doc this week. I am thankful for your videos, they help me realize I’m not going crazy...
Until recently I thought all of this was normal, that everyone experienced this. After being diagnosed with POTS my cardiologist also felt I needed to look into EDS because of other things I was experiencing.
This video explains me! I was recently introduced to this disorder by a TMJ specialist. After (almost) 18 years, my symptoms have been explained! I’ve been convinced that I was the crazy one, but it turns out my pains and abnormal issues have a reason!
I don’t have any other friends with Eds and this just made me cry so hard ... I didn’t even realize these were problems as a kid. My mom thought I just had depression and that’s why I wouldn’t get out of bed for a month and I thought pain was just a side affect of depression but depression was linked to my pain. My mom use to yell at the truancy officer telling them I needed mental health breaks but really I needed a diagnosis
Just come across your channel. In the process of finding out if I have EDS and I have found your videos so helpful and informative. Even if it turns out to be something else it's nice to know the things I experienced as a kid are shared. Thank you so much for your channel.
My 17 year old daughter called me hysterically crying and is convinced that this is what I have. I have the rheumatoid factor in my blood and just fall short of multiple diagnoses. I have been in so much pain for 17 years and cannot stay awake. Gabapentin has helped, but now they want me to have a brain scan for ms. I watched one of your videos and answered yes to literally everything. I'm going to mention it to my rheumatologist.
Can relate to Everything you two girls say- and I'm twice your age and just now getting diagnosed. Crazy all the things none of us realized as kids, or did notice but no one took serious.
![How I Get Around w/ Ehlers-Danlos Syndrome #ThisIsMyEDS [CC]](/img/n.gif)
Look at all of this VALIDATION OF MY CHILDHOOD ISSUES
so glad to hear that! when I got my diagnosis I felt exactly the same with the validation part!
Mozart Starling me AF.
Lol
I feel this so much.
Yes, 40 years later. At least I take care of my health, because if I don't then who will?
❤ when I was in high school my dad always joked around and would say "you are 17 with the health problems of a 70yr old!" Thanks EDS lol
lol SAME
When I was in my 30s a dr said my spine x-ray looked like a 70 yr old.
same and since i was 20 my knees hurt and i went to the local clinic where one of the doctor said the same and laughed at me (and after that lots of doctor said my pains must be psychological) , since than i cant trust in public healthcare.
Lol same but my husband says it. And when I was having my acl surgery, my doctor found I had arthritis in my knee. It was last year when I was 30. I was like what 30 year old has these issues!? Then now I know...EDS
Yes!!!! So much this!
This is my life but everyone would just tell me to stop being dramatic
ugh I know the feeling...sometimes only others with chronic illness can understand
Same. Not diagnosed, but I think I may be soon.
I understand, got bullied for limping and crying because I was in constant pain. I still get bullied sometimes but staying positive helps.
Hey! You have the same last name as me, and that's the same side of my family that has the EDS! :)
Same
Teachers always accusing you of being lazy. Having trouble breathing and being dizzy but not having asthma they told me I was faking for attention.
Ouch, that's rough :/
i got that a lot too :(
Hello! It would be super helpful if you or anyone else reading this could point me in the direction of how trouble breathing without asthma is possibly connected to EDS if it is. I have not come across that yet and it would be very relevant to me.
Ladies: I’m a 55 year old woman who has EDS. I’m commending you for this video. You’re helping people who’re facing massive oppression. God bless. 💕
Thank you very much. No one with a disability should ever be discriminated against, and I wish the world was more knowledgable about visible and invisible illnesses. Hopefully making videos like this can make a difference.
Yes, you're making a difference.
💕
Hey I've seen you before
I am convinced this is my problem
Did either of you have horrible "growing pains" nearly daily? I got them almost every day, mostly in my legs, and they were so, so painful. I have very few clear memories of my childhood but (sadly) one thing I can so clearly remember is just how bad those pains in my knees and ankles hurt. It was like someone was grinding a screwdriver into my joint. My mom took me to the doctor when I kept waking her up crying from the pain and my doctor said they were just bad growing pains and I'd grow out of them.
I haven't grown an inch in 6 years, still get these pains on a weekly basis ... so yeah, definitely growing pains. :/
I didn't get growing pains, but I have heard that a lot of people's EDS pain was passed off as growing pains when they were younger. If you do have EDS, it may have never even been actual growing pains and definitely still isn't if you haven't grown in 6 years.
I did, my hips were so bad from time to time especially when I was in 5th grade, that I could sometimes nearly fall because it would suddenly hurt too much to put weight on a leg in mid step...
i had the "growing pains" and still do to this day. ive talked to a lot of eds people who have said the same thing as well!
Claire Jeske oh yeah! Horrible growing pains in my legs as a child, still have them but they have moved to my arms now and I am 40 years old!
Claire Jeske I wound up in the ER at 12 due to waking up crippled one morning! They told my parents then that I would PROBABLY grow up and have some type of arthritis. Then, Scoliosis at 13 and so on...I am 52 now and STILL fighting for a diagnosis in addition to Fibromyalgia.
This was very relatable everyone kept saying I was weak and dramatic
I understand completely...except I am often dramatic, so it definitely seemed fitting hahah
@@IzzyKDNA lol
I am comforting my inner child and validating her through this video.
Being told “it could be in your mind” really affects you. You doubt yourself. Now I know I was right, I was sick. I was in pain.
I can completely agree with the thought of “is this in my head”. I grew up thinking everyone dealt with the pains and sickness I dealt with because I was always called dramatic! I was recently diagnosed with gastroparesis and I’m thinking it could be related to a connective tissue disorder that I’ve missed for my whole life! Thank you for spreading awareness!
The walking part: the way I explain it is it feels like I'm walking with loose doll legs
I always describer it as a skeleton with no muscles. Just a skin with bones.
I'm walking slightly lowered since 8 yrs. As soon as I straighten my legs, the knees start to wabble
I say all the time I feel like a damn Pinocchio doll
I say that too! I’m a doll collector so it’s always the first example I think of
Yess
The dark circles.... man. I’ve had them since I was a child and it’s never made sense.
I've had them too! People kept saying the circles were from allergies like my hay fever.
I have them too, and my oldest son has them bad. Worse than me, he's had them since essentially birth. I had no idea it was an EDS thing.
Me too and I never knew why. I'm one month away from my geneticist appointment yeyy
OMG SAME
Literally same. I have had them for forever and they are so dark no matter how much sleep I get
Absolutely no one:
Izzy: describes my entire childhood
when they started talking about pain I realized my hands, lower back and hips hurt....
Mine was my neck, shoulders and lower back :')
@22emme22 I have all of those. Neck, shoulder, lower back, hands, lower back, and hips.
Wow, I did not realize how common the handwriting (or the hand raising) thing was. I hold my writing utensils funny too - like, I have two fingers below the pen/pencil, and then use my thumb and other two fingers to hold it in place, so I can actually be able to control it.
Oh shit - and I have the under-eye discoloration and lines! That's kind of crazy. (Also, I was able to trace my veins all the way up my arm, so when I got bored in class I would. People doodled, I didn't know I was so weird...)
hahaha are you diagnosed with EDS? it's so funny how we all dealt with such similar things as kids!
That is EXACTLY how I hold mg pencil and everyone makes fun of me
I hold my pencil that way too
Kendra Lewellyn I write funny. I hold the pencil very tightly and in a weird way
Oh my god!!!! I didn’t realize that the under eye discoloration was an EDS thing!!!!! Ugh how did I not get that?!?!
hahhahahaha there are so many things i realize are related to my EDS that I realize all the time!!! It affects like EVERYTHING
@@IzzyKDNA ♥️
I didn't know either! I too have very visible veins on my upper and lower eyelids. I haven't been diagnosed yet but I am almost certain my daughter and I have either heds or some sort of hyper mobility disorder. I went to my doctor and he had never even heard about eds, got a referral to a physiotherapist. I am just so scared not to be taken serious.
People used to ask me, before I got into makeup, did you put blue eye shadow under your eyes? No!
I had someone try really hard to get me to "admit" my husband gave me black eyes when he didn't. The ladies just knew I was lying about my black eyes. I was just sick, not physically assaulted.
I had a lot of issues as a kid with my handwriting and "growing pains", dark circles around my eyes, and just pain pain pain all the time. My doctor told my grandma that I would grow out of it, I was just really flexible. At 15 I was officially diagnosed with EDS hypermobility. I went through physical therapy for two years with almost no progress. I almost didn't graduate highschool because how many days I missed. I'm 26 trying to deal with the pain and loved ones not understanding what I'm going through. I have so many of the same symptoms as you guys. Frozen joints are the WORST. Thank you guys for making this video. More people need to see the signs especially in their children 😘
Omg, I'm recognizing so many things that I didn't realize weren't normal and were totally EDS-related when I was a kid.
Writing, the too-tired-to-hold-your-hand-up thing, crappy posture, back and joint pain (for some reason I thought that was normal?)
Sameee- im still a kid (12 this month) but I relate sm to this video, its awful. I even fit the criteria for hEDS
I think that the hardest thing is to adults understand that we are in pain all the time, and as they just move on, like it is nothing, we start to believe that it is nothing too! I don't have EDS, but I have a lot of things mentioned in the video, and as I am so used to that I don't even realize that I am feeling it, I only remember about it when it is so bad that I need to treat it in the hospital :P it sucks
Yeah I can definitely understand this. Sometimes I'll start to feel a bit irritable and then a bit later realize it's because I'm in a lot of pain.
Omg, can't believe you mentioned the walking thing. I used to get that, although thought it was just a self-conscious thing. But it was like 'how do I walk again?' It felt so weird!
Also did anyone else ever like being upside down? It was a joke in my family if i was on the couch they would always see my feet first above my head. Maybe i was just weird
Cluna Ssssas Hi yes I really did. Probably something to do with normal gravity being reversed on your joints and blood flow going back to brain and heart (if you have postural orthostatic tachycardia syndrome with EDS, it is recommended to raise your feet above your heart often). I’ve always been a bit of a monkey though so the upside down thing was never questioned lol
YES.
that's a thing I still do... it feels like my natural posture
I still do this!
I loved being upside down! As a kid, I would dangle my shoulders and head off the bed while lying on my back. The wall was only a couple of feet away from the bed, and I would flip my body up so that my hands and knees were on the wall with my shoulders still braced by the bed so my head could dangle with the rest of my body above it.
I was just diagnosed with Eds, and I relate to everything in this video so much but especially the forgetting how to walk. Sometimes I feel like I’m walking so strangely that other people must think I’m drunk or something. I think that one of the weirdest things for me to realize was that people without eds really don’t have to constantly think about how to move their body to do things, it just does it. But I have to constantly engage all of my muscles just to keep my hips in place.
yeah I know exactly what you mean. Sometimes I'll be standing and I feel like my hip wants to kind of pop out (not sublux though, like it wouldn't be painful), and I have to engage my muscles to prevent it from happening, whereas it would never happen to someone else.
Me with my back
Yes and when I’m at the pool and my friends are just walking without shoes My feet are like how am I supposed to walk lol and also I get asked a lot why I’m limping or if I’m hurt
That's me sister!
@@malanamarie5206 i could never walk without shoes outdoors , well still can’t !
Yep, just recently I've been diagnosed with dysautonomia, but always had these hyperextention issues, even to the point I pulled my meniscus in my knee apart. Dark circles, heat sensitive, cold sensitive, stiffness, aches, pains, arthritis.....
oooh sounds really painful!! wishing you the best with your health
Y’all have helped this older lady understand her life...thanks
I'm glad to hear that!
You guys are amazing! Your describing my school life!. School days were so hard.." I was the hypochondriac" according to the teachers. It is so traumatic to go through something like this and suffer in silence when those around you are unaware. I think what you are doing is amazing. Its definitely not easy to live with but I think we all rock, the fact that we do so well!! Good on you guys for spreading , sharing and raising as much awareness as possible xxx much love xx
I’m literally in tears right now as this is so relatable. I am almost 40 and I’ve been in and out of the doctor’s since my early teens. I am wanting to go get officially tested for EDS because it sounds like everything I’ve been suffering with since childhood. It’s getting worse and some days it’s just unbearable. I’ve had everything checked, had all labs done, visited psychiatrists/nutritionists/specialists, put on antidepressants, been told I need to sleep more/eat more vegetables/exercise more/lose weight/drink more water. It’s so unbelievably frustrating when no one listens or believes me. If I don’t have EDS I have something else going on because I feel like my body is falling apart.
How are you now I feal the same
Update?!
Oh my god, I'm 24 and this was literally my childhood. I tell my boyfriend everyday that I don't know why my body is failing me.
I have found that going through menopause has made things worse for me. I haven't been diagnosed with hEDS but I am on the hypermobility spectrum.
I watched a specialist on TH-cam who said puberty and menopause can cause changes because hormone changes can effect EDS.
I've cried in all your videos, for real. Like, everything you guys said. I feel sometimes so alone, a weirdo. I can't complain with my doctor anymore because he just says that it's normal. I'm doing pilates and the teacher gets mad if I can't do a thing or my shoulder looks like it will fall out.
I injured myself on my back one year and half ago. I was in bed for 5 moths in pain, crying and I couldn't sleep because of the pain. After, I starded physical therapy, and more pain. Now, I still can't seat for more than 3 hours, after that I need to lay down. And even now, people look at me like I'm creating all the pain, like I'm lying.
I need a doctor and a therapist that I could talk without being judge. And I really need friends with eds, because I feel so alone and sad.
ugh I'm so sorry to hear all of this...it's really not an uncommon story in the EDS community because all of our blood tests look fine, so many people assume we are fine. I hope you can find a new doc that will help you. No matter how many docs it takes or how discouraging it may seem to be turned down by doctor after doctor, there will be someone who can help...I saw like 30 doctors and nobody knew what was wrong or how to help.
@@IzzyKDNA “seek and you will find”. The pain I feel knowing that means seeking the answer my entire life! But I am certain the Bible means exactly that!
Look for myofascial release techniques therapy…totally life changing!
Omg! The holding your hand up in class issue cracked me up i would never have thought of that being an EDS thing, but so relatable! Feeling like an old lady moving as a kid aswell... i used to joke about it but seriously that's how it feels. Wait under eye colour is part of it? I still have soooo much to learn about all this ..
The eye discoloration thing though! I was searching for so so long and then I saw other girls with EDS and BAM it all made sense.
I have under eye discoloration too! As well as over the eye. My HS teacher thought I was smoking pot and partying all night, even called my mom with her concerns. I never did drugs or partied until well after HS. Soooo frustrating.
I’m being diagnosed with Eds right now and watching this, I have NEVER felt more validated in my life. I’m sitting here at 4am with my service dog and I’m balling my eyes out and she’s like duuuude chill u need to put compression socks on 😂
exactly the same here. except it is 0:24.
I have heds and had basically all of this as a kid. I have the same under-eye circles as Jullian, and once I was diagnosed they finally made sense. I could never figure out why you could see the veins under my eyes before.
ISwearImNormal it’s crazy how EDS can affect such random things like under-Eye circles!
Same here girls, and I’m a 55 year old woman born in 1963.
I don’t have deep eye circles, but I just look very green because you can see through a lot of my skin
I haven't watched this video. Wait that's parts of eds? I'm just reading the comments for now.
I have that. I thought I wasn't getting enough sleep.
Does anyone else have bone pain as well? I have pain where you can press against my muscle or my skin and it’s fine but if I press against my bone it hurts. And I can have bone pain when I try and walk if my leg bones hurt at that time.
Not really for me. In certain places on my body I can push down and it hurts, like the inner side of my knee, but most bones don't hurt me when I push down on them. Hope you can figure out what's wrong / anything that can help.
I have bad bone pain, started with just my calf bones. Now it's all the way up into low back, and starting into midback.
I have chronic vitamin D deficiency (crazy low), which apparently is common in the EDS population.
i get such bad pain in my bones when i walk especially in my shin but they believe it has something to do with my scoliosis (though my scoliosis is fairly mild)
EDS is literally half about bone pain
Yes.
Absolutely agree with the inability to handle extreme temperatures. 72 is the only thing I can do anymore comfortably. Colder and my feet and hands to numb (feet way worse, numb the entire winter in WI), 75+ and I can't stop sweating... I didn't know it was EDS related, thought it was meds to control other symptoms. Took decades of symptoms building to the point I was disabled, and still took a few years to receive a diagnosis. Just being ignored as a drug seeker, delayed diagnosis and treatment for a solid 5 years. The local small town clinic/hospital wasn't adequate to diagnose or treat EDS. To this day I still cannot get a GP that has heard of EDS! I ask for a doctor that is familiar with it, and get told to make an appointment with a random doctor, and after 8 months waiting for the appointment you get there and they ignore the questions related to EDS... I travel hours for pain mgt. for years just to get any treatment, no regular Dr., tests/monitoring, treatment other than pain relief. Having an invisible disorder sucks!
Ugh I'm sorry to hear this about the doctors and not being able to find someone o treat you! There ARE docs out there, and it sucks, but you might just need to see like 50 more until you can find someone to treat you. It's so unacceptable and ridiculous that it's the reality. Wishing you the best!
I am in wi I'm getting tested
Cory Werner I cant handle extreme heat or extreme cold
I’ve never been able to handle big temperatures! Sweat at 72°… Over the years Raynaud’s has become more & more of a problem + all the other symptoms…. & somehow only got “Benign Hypermobility”! Trust me when I say there is nothing benign about it. I don’t understand why Drs don’t seem to want to do their jobs. I’m so tired of the pain & being ignored.
Well, this is me. I've also spent the last 4 years or so suffering through Northern WI winters. It doesn't matter how many layers of gloves I have on my hands they often go numb while outside, and it's like 30°F out and longer periods of time make it so much worse.
The making sure to move every 20 mins is SO REAL! I wish I’d known about that a long time ago.
Omg yes!!! I hate writing!!!! It really always hurts
ugh omg I still do the braces and stuff to "show" people where I'm having pain
I’m sat here watching & crying because finally I see people who have felt what I have. Thank you for this💜
This is amazing. I look back on my childhood and realize all the things that I considered 'normal' are not at all normal. I never thought about it or realized it. I learned to push myself through the pain because everyone else was fine so I assumed they felt the same way and just dealt with it. It wasn't until I was much, much older that I realized these things aren't normal. Other people aren't feeling this pain or having these issues.
yeah i know, i thought it was all normal too!
I used to think it was normal to be in pain because I'd say something to my friends and they'd be like, oh yea I get sore after working out or xyz activity too, it's normal. So I just figured it was normal, or due to old sports injuries as I got older.
My pregnancy with my twins is what finally made it clear that my pains were not normal, and not simply due to old injuries from childhood, also things got so much worse. But still took about another 5 years, a back surgery, and a cancer diagnosis before finally getting diagnosed with the chronic illnesses (including EDS) that I've had since childhood.
Every zebra's pet peeve, when we say we're in pain and someone says, "oh yeah, my knee hurts too." 😤🤬
I’m trying to figure out what’s wrong with me. Have u ever did a vid? I’m seeking help from others bc I can’t get diagnosed. My last pregnancy was very painful. How did u get diagnosed?
@@Nuverselive I was very lucky. I went to see a rheumatologist to confirm my lupus diagnosis. The doctor I saw happened to be very familiar with Ehlers-Danlos Syndrome, and after my clinical assessment she diagnosed me with both Lupus, and Ehlers-Danlos Syndrome. I've had a slew of other diagnosis since then, but they are all basically complications and comorbidities to my 4 main conditions. I have not made any videos. I'm also not a doctor. My advice is from a patients perspective, learn to really advocate for yourself. Don't let a doctor brush you off. Do lots of research, stick to peer reviewed and other official publications so that you are learning accurate info. If you think you have EDS, they published the updated diagnostic criteria in 2017, and you can find it online. Go through and see if you meet the criteria. If you think you do, bring that info and anything you have to back up your symptoms to your doctor and ask them straight up if they can diagnose you, or if they need to refer you to someone who can if they are not familiar enough with EDS to diagnose you themselves. But seriously, bring in whatever research you find that you think is relevant. Ask the doctor to help you sort through what fits your symptoms.
If you have trouble advocating for yourself, or remembering stuff; you may want to bring someone with you, to help you cover everything and stay on topic, as well as advocate if needed. Good luck.
My twins broke me! I've had 6 lumbar ESIs, medical branch blocks, and nerve ablations. My back still hurts constantly. My twins are 6 and on the spectrum, so surgery is out of the question right now. Did surgery help your pain?
You needed back surgery too? Wow! The worst part of needing the spinal fusion for severe severe scoliosis is that I was told I had slight scoliosis as a kid, but not bad enough to do anything about. I was medically neglected anyway so we never went back, but on top of that I had many undiagnosed genetic disorders causing my condition to degenerate very rapidly. So basically it could’ve been prevented if we had ever had it looked at again, because I certainly would’ve been given a back brace all those years ago.
I decided to scribe symptoms....Sweating...hyperflexibility, temperature deregulation/fluctuation issues, flat feet (I do not have this), frequent breaks, being in pain more than others, emotional pain, brain fog dizziness, missing so much school and being absent all of the time it seemed like, translucent skin (purple under the eyes), higher pain tolerance, not noticing 24/7 pain becoming immune to it (until you have something physically on you like a bandage, then people start to believe that you are actually in pain, "forgetting how to walk" (or what I say...."feeling like Bambi on my legs"), pain with laying too long, muscle tightening/spasm, looking into early.....
So comforting to know you aren't alone. Even family can't fully understand and get skeptical like you always have some sort of excuse. Thank you izzy for you channel. Even tho I'm nearly 10 years older I'm just working on my diagnosis of hEds and now my life finally makes sense. All the things. From pain to walking to just putting on my public face and being a different person just to avoid having to try to explain what most people would never understand. Thank you sweetie! I love your channel.
I have multiple chronic health issues which are mostly summed up with ED. I also have issues with my col6a3 and col27a1. I was terribly abused as a child, so got used to physical pain from an early age. Any complaints regarding my joints and pain was brushed off as 'growing pains' and over time I've utilized INFJ stoicism . I truly wish I could talk with someone about it and not feel guilty for making them feel bad for me. My whole body hurts all the time, and I would love to have an illness buddy.
My neighbor just identified this in me. I’m going for my first doctors appointment in a week or so. It a validation of my entire life. Literally every day I think of more things that were caused by it. I’m 22.
This video is so validating. I really resonated with your conversations about missing school. I would also miss weeks at a time and everyone assumed I was faking illness. I essentially missed years worth of my education due to these symptoms and I am so glad for content like this that puts me closer to a diagnosis. Thank you for this.
I can really relate to this! I’ve had a lot of similar experiences
I’ve been discovering a lot of things from when I was a kid that were probably signs of EDS that never got noticed or were misdiagnosed... I also did ballet, dance, and gymnastics as a kid. I would show off by doing some weird contortions and sit in weird position without realizing, etc...
This is my life,but my GP was telling me ,I'm just depressed!lol, It took from 2013 to 2018 finally being diagnosed! but I never knew about dark circles under the eyes ! There is no concealer in the world that would hide my ones!
My normal doctor said it was anxiety (I'vebeen seeing her sinceat least 2010)... I've been seeing a psychologist and he was like it's not anxiety get a second opinion- saw a new doctor and she said "that's not normal, we're gonna figure out what's wrong with you". Did you know your armpit bone popping out is NOT normal like I've been told for 24 years...
I'm 43 now and I was finally diagnosed at 41, a few months after the new criteria for hEDS came out. For decades I was the weird genetic mutant with no real explanation for all the pain. And the accusations of being a hypochondriac.
Plus I am still realizing the weird things I think are normal but my husband or friends are flipped out by.
I was diagnosed at 42, like the girls in the video, I thought everybody had all these constant aches all the time, and had to fight their reflex to stretch in the morning cause it might pull something out of place, etc.. We didn't figure it out until my teen kids were showing signs and I took it seriously, educated myself, and had it looked into properly. Our generation just glossed over so much crap we didn't have to suffer through without help.
This makes so much sense!!! My hips would pop in and out of during scissor kicks!! And it was treated like it was normal. And I’m ALWAYS IN PAIN. Also I can lick my elbow... and my knee always hurts like going up the stairs and I have no idea what to do with all my pain and what to do to get better. Im 22 and I recently got diagnosed... and everything you’re saying makes so much sense. I also have ADHD. I need to see a physical therapist
WOW..sounds like I'm listening to my own childhood. So validating to hear how similar those of us with EDS journey's are! The validation is so comforting & so good to be reminded since I've got an 11 year old who has been preliminarily diagnosed with EDS
It's funny how much of this I can relate too! I was told my hand writing was really bad because I am left handed but it was purely because of how painful it was to write! Keep making stuff on EDS! Its such a neglected syndrome x
So much of your childhood stories (and several other videos I’ve been binging) hit so deeply for me. I’ve wondered my entire life if there was an answer for my body. I’m definitely going to start the fight to get an answer again! No doctor has ever bothered or tried for me when I’ve tried in the past. Wish me luck!
I have Ehlers Danlos as well and I am so thankful for the rise in awareness and research. My first pediatrician completely dismissed all of my symptoms from my GI issues to my hypermobility to my chronic pain to my bouts of tachycardia and passing out. It upset me so much because she didn't even try to find out why I was having these symptoms. I luckily got a new pediatrician over a year ago and it took her meeting me once for her to suspect Ehlers Danlos and she referred me to ortho, hoping they would also address my ankled and feet. He also suspected Ehlers Danlos and on top of that, he prescribed me SMOs (took my measurements and impression and sent them, and me, to an orthotics and prosthetics specialist). By the end of my consultation, he told me that I did, in fact, have Ehlers Danlos. I have also been referred to a geneticist because he wants me to have genetic testing done to determine 100% that I have hEDS and not another form, which I respect and understand. I did get my SMOs, but we later found out that I needed a lot more support and also have hypotonia and bilateral foot drop. I now have AFOs and they even have dinos on them! To everyone who has participated in raising awareness for Ehlers Danlos, thank you. If you have any questions I am more than happy to answer them. My Instagram is amber_nicole_dean and you can easily reach me there.
My knees have been dislocating for forever, I’ve had so many reconstructive knee surgeries. And finally at 17 my doctor is sending me to an eds clinic to get testing. These videos validate all the pain I’ve felt
ive always thought i was just a wimp when i was exercising or it was cold
Thank you so much for this video! I am 30 and in the process (over the last several years) of finally getting an EDS diagnosis. The things you talked about resonated so strongly with me that I cried because I've never heard anyone else talk about what I dealt with growing up (and still now).
I have not been diagnosed with Ehlers Danlos but my pain management specialist believes I have ED. A lot of the things said in this video really hit home for me and I didn't expect it to.
I hope you can be evaluated for EDS!
ED and EDS are two very different things :) And with a name like "Hannah" I doubt you'd be experiencing ED.
@@DJogdog ED also stands for eating disorder, I know that’s not what op is referencing (they meant EDS) but pls don’t discredit other people who say they have an ED. Doesn’t always mean what you think it means :)
@@DJogdog how does having the name Hannah mean they can't possibly have an ED what the heck? besides context makes it incredibly obvious they meant Ehlers Danlos
@@DJogdog ? Meaning?
I genuinely relate to every single thing that y'all said and I'm almost crying finally relating to someone else. Everything from the wrapping painful joints to hating bumper cars to not even realizing you're in pain. I just feel seen and I hope that my doctor will take me seriously
Omg, I am so complexed by my bags under my eyes since I'm a kid because they are so different that the one of everyone I know and I never suspected that it was EDS until you point it out, wow, thanks for the info, will help a lot with my perception of them ! Mines are really like the ones of Jullian.
I did ballet for 7 seven years and same, I really shouldn't have. And I identify so much with everything you said about sport class, it was awful.
People have asked me if i have black eyes before, i feel u. Ive been so self conscious of my dark circles since then
This video is a huge eye opener for me. I've had so many of the same experiences in my childhood, and some i had no explanation for. I'm not diagnosed, and I never even knew about this condition until I came across a tutorial for drawing hands where someone pointed out that the hands drawn were hyper mobile, which led me to google that and discover a new word for what my hands can do... And my arms, and legs, and feet, and at one point my neck. The arm thing! When you hold your arm up in class for a question, i didn't even realize that was a sign. My elbow would start hurting within a few seconds of doing that. The over heating too!! I've always been a furnace, and I cannot tolerate the heat very well, which is ironic because I can't tolerate the cold either! The flat feet too. Mine are so flat, they pancake. I can't believe that could be a sign of EDS. Light sensitivity too! I could NEVER do the light tests at the optometrist because it hurt so badly. The eye bags thing too, i always noticed how purple mine are and i just thought that was due to my insomnia (which it could be, i'm not sure!).
Do you happen to have IBS as well? I'm wondering if that could be connected to EDS somehow.
When you sit up straight, does your spine start to ache? I have bad posture because that happens to me.
I'm going to approach my doctor about this because now i'm wondering if theres a possibility I may have EDS.
I can't tolerate cold OR heat hahahhaha...it needs to be a perfect 73°F hahaha. I dont have IBS but i have gastroparesis...it makes eating really painful and I get nauseous all of the time. IBS, dyspepsia, and gastroparesis all go along with EDS sometimes, though of course IBS is common in the general population too! YES MY SPINE HURTS WHEN I DONT HAVE SUPPORT OMG OMG OMG SO BADLY!!!!!!!!!! i really hope u can get into a doc to have them test you for it. lmk what happens!!
@@IzzyKDNA I'll definitely keep you updated :) it feels so good to relate to someone about these things!! 💖
The weird thing is that I have high arches - but they always hurt when I was a kid and I refused to wear shoes. The more I look, the more symptoms I see.
OMG, I just found out about eds yesterday. It explains almost everything I've been going through. I live in a tropical country. The heat is kinda killing me, but then when I am in a air-conditioned space like a shopping mall, it's too cold for me, my lips start quivering, my skin turns to purple. Optimal temperature would be 28-29°C
Wait I can't tolerate heat or cold at all. I can only exist at 73F. I'll pass out in heat and in cold I violently shake in Texas cold. Not no damn maine....TEXAS
When you got to the one about raising your hand in class.... Still can’t do that without pain and adjustments 😂
me either! still hurts haha
the arm raising thing oh my god i didn’t realize
this video is making me absolutely sob. i havent been diagnosed with hEDS, but im currently going through everything you guys described during your childhood years. ive always felt so isolated being the only person with these problems that i knew. thank you for making me feel a little more normal❤
yes!!! The body stiffness is brutal! I just kept thinking it was in my head because after starting to move and staying in movement it got better...but if i stop then the whole process starts again. 😏🙄
Being raised by disabled adults who didn’t believe I could possibly have anything wrong with me has been the source of most of my problems growing up, because I’d never be taken to the doctor. I’m still trying to get a diagnosis, but after hearing your experiences, I’m like 99.9% sure it’s EDS. Thanks for this
I relate to every single thing y'all say in this. I was diagnosed in December and it's ridiculous how many things from my childhood I can attribute to EDS!
That's exactly how I felt when I met Jillian two months ago! We just had so many of the exact same things, including random ones like these!
Love this video! The first pic of you holding up your leg?...I did that in a complete split against the wall. 😂 I had ALL the problems you had. But also SEVERE leg pain. I still do. Both my eds sons had it too. Thank you for doing this video!! 💖
Oh and I used to do backbends and I would lay on the ground and push myself up into a back bend. I also loved the high low bars. Now that I think about it, I should have had so many broken bones from my sheer clumsiness but that's the beauty of EDS, it just stretches out and goes right back (insert sarcasm here.) Oh I broke my pinky and didn't know it but since it didn't look right or feel right, I decided to have it checked and sure enough I broke the middle bone. Also my ankles have given out so many times, I would flail around so wildly just to be able to fall without busting my head open.
I'm the same i just can't seem to brake a bone. I'm diagnosed yet trying to get into my doctors
Interesting, is not breaking bones a common thing with EDS? I don’t know whether I have it, but I have had a lot of signs. And I’ve definitely had some situations that should have resulted in a big injury (bone-wise especially) but usually just ended up in a dislocation, which for me is super common…
Okay this is possibly the most validating video I've ever watched!! (Diagnosed 1 year ago)
The walking thing I can 100% relate to. It’s so weird when walking and it feels as if my legs aren’t properly connected
I used to "jump rope" with my arms as a kid to impress my classmates, lol. In hindsight - terrible idea! My shoulder would fully dislocate a lot during basketball. I loved the sport so much though, I would put the joint back in myself, sit out the rest of the game, and then back in for the next game.
when yall talked about the constant pain, I cried. Bro, that's what it is and so much of the time I just feel crazy but theres never a time where something doesn't hurt. I can't imagine how much it's contributed to dissociation...
There are some more with me. I put my feet pointed out to sides instead of pointing forward. I always used not to lift my leg up high enough while walking, relatable?
some people with EDS have foot drag! I thought it was because of nerve damage due to EDS but not positive; i jut know it's related! My feet turn out when I lie down on my back because everything is loose and they just turn out! But not when I'm walking
My feet turn out too. Makes walking in spurs difficult. thought it was from years of ballet.
My mum always kept telling me to pick my feet up when I walk because I used to kick the top of my big toe off at least every month.
I didn't get diagnosed EDS until I was 51 I'm 53 now. Some days I have a really hard time of it. I don't have anybody to talk to about it so I try to get as much information as I can online listening to webinars and videos like this so I thank you so much posting this now all I need to do is find that person that understands for emotional support because I sure feel alone kind of it. Thanks for letting me wine a bit
So, I'm 14 years old and my hands do hypermobile things and I thought it was a normal thing because I could also wrap my arm around my neck easily. I never knew that was actually EDS because I would just be funny and show people and freak them out. I showed my mom and she simply said, "So that makes sense."
Yeah it could possibly be EDS! do you deal with other issues like joint pain, stomach or heart problems? Some people are just really flexible but don't have EDS, so if that was the case then I wouldn't want you to worry :)
Same but I got diagnosed with HMS at age 10 HMS is basically the same as EDS type 3 but HMS isn’t a connective tissue disorder
@@IzzyKDNA 14 and flexible as well as them. I am currently trying stuff for injuries and I am unsure if I do have eds or not. I have coeliac disease (autoimmune disease) and get joint pain in the the mornings, especially in winter. Could this be related to eds or could I just be weirdly flexible? Irdk
so glad i found your channel! I'm a person who suffers from Ehlers-Danlos as well as Gastroparesis.
I had all of these as a kid omg I remember always sitting out in gym bc I would twist my ankles or sprain my wrists all the time I even almost failed gym class in grade 8 because that's when I noticed I would have subluxations in my ankles. I would even fall over my own feet or even into walls lol. And the worse thing was always being told by drs it's just growing pains like if it's just growing pains why am I not 8 ft tall????? And even before 3 years ago my knee did some weird shit and it was locked and i could not move it passed 90° like it was just stuck there and i went to 4 Drs before being taken seriously. I am getting tested for hEDS soon because I have the POTS and IBS symptoms of hEDS but I was only diagnosed with hypermobility syndrome when I was 11 and never even knew what EDS was till about a year ago
Oh wow that's a strong history of hypermobility! Honestly, sounds like a similar journey to mine. I feel like every EDSer was told their pain was just growing pains, even when they were completely done growing. like ummmm no. Hoping you can get the diagnosis, if it's what you end up having!
I was just diagnosed with severe hypermobility, and i might possibly have EDS and I relate to everything in this lol
beginning to realise that a lot of the symptoms you’re talking about apply to me and it makes sense tbh
Listening to you guys talk about missing school and being hard on yourself honestly made me cry. My vice principal had a strait up fight with me telling me that my joint pain was fake and I was skipping school. I’m a senior right now I’m 18 years old and right now my doctors are telling me I can either treat for juvenile arthritis or we can spend money we don’t have to do the genetic testing. I’ve been diagnosed with hypermobility but that’s about it at the moment and money is tight. When I was about 12 I discovered I could do the splits and leg lifts and my joint pain got worse and worse. I found out I could contort my hands and I could stand on my toes with my toes curled upside down. I developed back and hip pain and started seeing a chiropractor twice a week for years. It wasn’t until my doctor mentioned EDS that I started looking into it and discovered my stretchy skin, joint pain, flexibility, flat feet, and long fingers could all be related. I’m still in the middle of it right now but just hearing you talk about missing school before you had answers and now that you have answers made me cry. It’s something I’ve struggled with every year of school. I’m sick constantly and I hurt all the time. It just resonated with me. Thank you for making these videos and showing that I’m not alone in my pain
I'm so sorry you're dealing with this. I think I can speak for Jillian and say that we both understand. Hopefully a doc can test you on the clinical hEDS criteria and give you some answers. Wishing you the best!!!!
It’s just been kinda crazy the last month. My guy has started acting up, I’m bloating like crazy and the pain gets worse and worse every day. I do have an appointment with my GP tomorrow to get Recommended to someone closeish who specializes in genetics or EDS. Hopefully it goes well. But it is seriously comforting knowing that other people around my age deal with these things to.
I’m seeking an EDS diagnosis and all of these things are just clicking for me. I’m glad there are videos like this because this all explains so much
2:18 i think i had this on my fingers... it's called raynaud syndrome.
I just got diagnosed with EDS, and these videos are making me feel a lot less alone and a lot less scared. Thank you.
THIS IS SO VALIDATING
I just found out I have H-EDS and this video made me cry both sad tears and happy tears because everything they are saying is so familiar and I struggled for so many years with always being in pain but never knowing if it was normal and never feeling like I could talk about it. I went 22 years without answers and I’m so glad to finally find out that I’m not alone.
I'm so so so happy you finally got a diagnosis. It's so validating! I'm glad you were able to relate and I'm wishing you all the best with your health now that you know what the problem is!!
I know this is an older video and you might not see this, and everyone here seems to be on the same page lol. But you both deserve to hear it again: thank you. Thank you x1,000,000 for speaking all of this into existence. This is the first time I've ever heard of other people having these specific experiences. I had to pause a lot to collect myself and I think I made it to the last 30 seconds before I burst into tears 😂 Thank you for being so open, and validating the things so many of us have been through!
I'm so glad we could be there to validate the things you're going through. It's hard to do it alone. ❤️
"...accepting that maybe I was a little too hard on myself in the past and that it really wasn't my fault. I didn't choose (this). And I kind of forgive myself for being so hard on myself when I really should have been more kind."
This is something that many, many people who went through situations that were out of their control need to tell themselves. Even adults go through stuff this way and beat themselves up, but it's especially hard when it was during childhood and you just had no way of knowing it wasn't normal and you weren't just being weak or a failure somehow.
I wrap myself with bandages and use braces for the same reason, I get a little relief with them, but also it’s a visual cue to others, that I’m hurting. It helps a lot when I go out, with things like groceries or people letting me cross the road and just people being more considerate.
I started experiencing widespread muscle pain when I was about 9 years old. So many fruitless doctors visits. So much suffering. I didn't know what to think about the pain when I was that young. I thought I was gonna die in my sleep or something. Iffy fibro diagnosis at 17 years old. I never believed it. It all kind of makes sense now legitimately everything I've ever complained about... But I'm scared to go see another medical professional and just not be heard.
I'm soon to be 56 yo.. a lot of my symptoms started about 10 years ago.. I got a fibromyalgia diagnosis but have always felt it was something more.. didn't know if all symptoms were related or not. Recently I started taking my blood pressure and heart rate.. and like you said in 1 of your videos it's only measuring your HR & BP for that moment.. so I picked up a pulse/ox and my HR goes from 55 to 100.. lying down to standing up.. I've been short of breath lately & presyncope and pain and fatigue have been ramping up.. swollen feet and hands
Guess I should make an appt. with my Dr. I just want to say your videos have helped me a lot. Not sure if I have eds but probably pots.. I feel bad for all of you that have had to go through this at such a young age! My heart goes out to you.
This video was so validating for me! Thank you both for sharing ♥️
Oh my gosh the purple feet/cold extremities thing! And having Hashimoto's on top of it... If my hands or feet get cold in the winter (no matter how many warm clothes, gloves, socks, etc, I wear in the winter), they are damaged for months. It takes well into spring before they feel normal again. And the initial pain from being cold takes hours in the warmth to reverse. But the constant pain from whatever damage happens is heck to deal with the entire winter, every winter. And I live in cold Sweden. :(
Oh boy. Thank you for posting this. I am a 37yr old wife and mommy of 3 young girls ....6, 4 and 18mths. I have the hypermobility type. The pain. CONSTANT PAIN...... I must say. One cool side effect was fast labours! Ok. Thats the only perk! But thank you for posting this!!!💕
I have found that I have all of these symptoms plus others not mentioned here. Just recently, I have realized how many near death experiences I’ve had with illnesses. I have been septic, had severe pneumonia and was hospitalized for 2 weeks, had shingles a month before that and severe strep a month before that which also hospitalized me for a week, had epiglotitis where I was told that had I not come in (to the ER) I would have died that night. I have never known somebody to constantly be so sick as I am. And it’s gotten to the point where I fear going to the ER because they might think I’m a hypochondriac (but they are the docs that diagnose me and hospitalize me). I have just learned about EDS, and I am making an appt. with my doc this week. I am thankful for your videos, they help me realize I’m not going crazy...
Until recently I thought all of this was normal, that everyone experienced this. After being diagnosed with POTS my cardiologist also felt I needed to look into EDS because of other things I was experiencing.
This video explains me! I was recently introduced to this disorder by a TMJ specialist. After (almost) 18 years, my symptoms have been explained! I’ve been convinced that I was the crazy one, but it turns out my pains and abnormal issues have a reason!
I don’t have any other friends with Eds and this just made me cry so hard ... I didn’t even realize these were problems as a kid. My mom thought I just had depression and that’s why I wouldn’t get out of bed for a month and I thought pain was just a side affect of depression but depression was linked to my pain. My mom use to yell at the truancy officer telling them I needed mental health breaks but really I needed a diagnosis
Just come across your channel. In the process of finding out if I have EDS and I have found your videos so helpful and informative. Even if it turns out to be something else it's nice to know the things I experienced as a kid are shared. Thank you so much for your channel.
My 17 year old daughter called me hysterically crying and is convinced that this is what I have. I have the rheumatoid factor in my blood and just fall short of multiple diagnoses. I have been in so much pain for 17 years and cannot stay awake. Gabapentin has helped, but now they want me to have a brain scan for ms. I watched one of your videos and answered yes to literally everything. I'm going to mention it to my rheumatologist.
Try to see a geneticist!
The POTS! You two are telling my life story! ... Ever cry because you finally have an answer?
Can relate to Everything you two girls say- and I'm twice your age and just now getting diagnosed. Crazy all the things none of us realized as kids, or did notice but no one took serious.
I just saw both of your dark under eye circles and as a person with EDS I was like oh yep I’ve found my people