Ehlers-Danlos Syndrome: My Diagnosis Journey [CC]

Published by Darron Toy on

Hello, hello! In a support group I’m in, someone posed
the question if anyone remembered the very last day they felt 100%. I started to look through my old photos, working
backward, thinking I was just looking for the last few days before I needed a cane to
get around, then when I found that photo I realized: Nope, that’s not 100%, I’m wearing
sneakers with a dress. Haha! That’s something that when I was younger
I said was a fashion choice I’d never make! I remember I was in enough pain that I couldn’t
tolerate heels anymore, and realized how tricky finding that 100% moment
was actually going to be. I might not even know what 100% feels like. Technically, I’ve had Ehlers-Danlos Syndrome
my whole life but the symptoms were rather dormant or just very subtle, easily dismissed. I had hypermobile knees and ankles which would
cause me to fall a lot and I would tire easily. I was one of the last to come in while running
in PE, my face would turn bright red to the point of alarm from my peers and all of which
were dismissed by educators and peers as they thought my weight was the issue. When I was little my eyes randomly went cross
and I saw double and needed glasses, again, it wasn’t considered a symptom of anything. When I was 13 my back would hurt so much that
I would slam it into the ground just to try and get some relief, it was my instinct to
try and realign myself. Meanwhile, no one around me knew what EDS
was, and it wasn’t until I started losing my ability to walk that I finally found it
urgent to investigate. I looked at photos from my freshman year of
college and though my ankles were weak and walking in heels felt like a trapeze act that
ended with my hea– with my feet in hot water by the end of the night… I considered it still manageable. When I turned 23, it came to a point that it hurt
to stand in heels even for a moment and though we were supposed to wear heels at work, I
slowly started trading my heels for flats, hoping my boss wouldn’t mind. Eventually, I had to open up about my pain
issues because my ability to stand at all was declining. I felt pinches in my heels constantly, and
after a few hours, the pain was so high it felt like fractures, and I needed to sit. I went to the clinic about my pain they told
me I just needed to put my feet up for a bit maybe do some stretches. And that hourly limit became shorter and shorter
until I couldn’t bare to be up more than a minute. I went to see the doctor again, I told him
I thought something was wrong, he sent me to a podiatrist, who ultimately diagnosed
me with flat feet and plantar fasciitis. My options were leg braces and orthotics,
he said, but the pain was so much I opted for surgery to reshape my feet after being
told that it was the shape of my feet that was causing me such pain. After surgery, I started using a wheelchair
because one foot was recovering and the other was in too much pain to bear all my weight
alone. I was sent home the night of the surgery and
woke up to feel EVERYTHING. I was screaming, I could feel the slices on
my foot and in my calve muscle, and I went into shock eventually. The fact that painkillers would not work for
me was another symptom, but we didn’t know that. The doctor expected me to recover and be up
and walking after three months. The surgery increased the pain levels in my
left foot, it was hypersensitive, a breeze felt like the burn of a candle. My foot could not even TOUCH the floor until
6 months after the surgery and it hurt very much to do so and still does. It was after the three month mark that we,
my podiatrist and I, realized that the surgery did not solve my pain problems, it was something
else, and we’d missed it. And though we thought I’d be walking by
then it turned out that I would be needing a wheelchair as a mobility device long term. I talked to my primary and he referred me
to a neurologist immediately and said… “Yeah, we have to get you out of the chair!” Blissfully unaware that my chair was a blessing
but the pain I was experiencing was not okay. It took me months to get an appointment, I
was in limbo all the time, just laying in bed, unmedicated, being in pain, waiting for
the day that a doctor might have the answer, might have help. The day of my appointment finally came, I
told the doctor my story, how much pain I was in, how it was limiting my ability to
walk, his response was… “Well, what you want ME to do about it?” That line felt like such a betrayal, I had
waited for so long, I was so scared and in so much pain and I just got treated like a
joke, like a spoiled child demanding a new pony or something. This is when I start doing more in-depth research
and investigation and through the help of my friends and the internet started really
looking into EDS. I’d done the hard part, I thought, I told
my primary I needed a referral to a geneticist. He refused. He sent me to a rheumatologist instead. I went to the rheumatologist, they sent me
to get a blood test, I go take the blood test at another facility on another date, and then
on another date I come back to the rheumatologist and all he says to me is… “Your blood test came back negative for anything” I said, “Okay… what do I do then? Where do I go now? What do I do?” And he just shrugged. At this point my lower back pain is really
becoming an issue, I had to lay flat most of the time because sitting up hurt too much. My primary sent me to a neurosurgeon, who
I again, had to wait months to see, he said, “I think you have an SI joint disease” “Whoah! You ACTUALLY suggested something! Maybe that’s it! I’ll take it!” He sent me to get, um, X-rays or MRIs of my
SI joint at another facility on another date and he scheduled me for some type of shot
in the joint, but it flared up my pain. I was stuck in bed for 10 days straight, no
bathing, no dinner at the table, just flat, and tortured myself to get to the restroom
when I needed to. I went back to the neurosurgeon and he showed
me my results. This day was the worst. I let him know how my body did not respond
well to the procedure and that this was another symptom of EDS, he told me I was exaggerating,
that what I was saying was impossible. He continues to show me my results, my joints
which should be fused together are actually far apart, ANOTHER symptom, he is alarmed,
he says this is not possible for a person as young as me unless I was in a physically
traumatizing event like a car accident. Nope, I hadn’t been. He tells me he wants me to get surgery to
fuse the joints and I burst into tears. I start to beg him, “You are not listening
to me! I’ve already had two procedures so far and
they both have caused me more harm than good! I can’t do another procedure until I figure
this out! You’re putting me at risk! I need to get tested for EDS!” He looks at me unamused and condescends, “Are
you trying to tell me that I’m wrong?” I just cry more because I feel so hopeless
and gaslit and there is no hope for any help or relief. And I don’t know what to do. Then the funniest thing happened, I’ll never
forget it. A woman in a white lab coat comes in and asks
why I’m crying. He throws an arm up in the air, “She thinks
she has Ehlers-Danlos Syndrome!” “Ehlers.. what? I’ve never heard of that… “ She looks to me, “How do you spell it?” I spelled it for her as she looked it up on
her phone, she looks at the x-ray of my SI joint and says to my doctor, “Um… she could very well have this.” And he just sat there stunned, grumbled like
a toddler, and said, “Fine! I’ll send her to a geneticist!” He wrote the prescription/referral thing for me. But I was never coming back there, I never
came back to any of the doctors who spoke to me like I was garbage and I don’t think
anybody should. I went back to my primary but he wasn’t
available so I worked with a woman doctor instead, I told her everything that had happened
so far and she was on my side and rooting for me, wanted to help me get whatever I needed. It was easy at that point to switch from my
old primary to now have her be my primary doctor and working on my case. My geneticist was also a woman who empathized
with the story I told her and she agreed with my analysis right away that I more than likely
had Ehlers-Danlos Syndrome and she wanted to do a full chromosome blood test. Now that took about 5-6 months but I finally got
my results and right there in ink, my chromosome variant COL5A1, classical Ehlers-Danlos Syndrome. Something I’ve had my whole life and I finally
got to see it in ink at age 26, after almost three years of self-advocating in medical
spaces and being told that I’m too young or that the pain levels I described were impossible…
there it was. Had I been diagnosed earlier, maybe I would’ve
known that wearing heels as much as I did, which wasn’t that much aside from a few
parties and work, would harm me so much before I turned 30. Maybe I would’ve known that pushing my ill-fitting
wheelchair so hard when I was already losing some of my ability in my wrists and shoulders, would
quicken the loss of ability there too. I could’ve been self-affirmed when I stood
on stage and said I had difficulty standing for a long period of time because of my “crooked
knees” and a professor said, “They look fine to me!” I would’ve known that what I thought was
“crooked” was hypermobility, that my knees bent backwards and subluxed on a daily basis. When my fingers did this and this, I could’ve
known why! Every time a friend or lover or someone I
just met commented on my soft skin, I could’ve jokingly said, “It’s in my genes!” Har, har, har, in reference to my diagnosis,
what a lost opportunity! [LAUGHS] Telling this story is my informal letter to
doctors and everyone really, to listen to people when they say they might be sick; when they
say they’ve heavily researched something and would like to be tested. Metaphorically I reached for my diagnosis
several times and got my hand smacked away because I was too big, too brown, too young,
and because of the misconception of how rare EDS is, it’s just rarely diagnosed. There is a problem when people come to doctors
for help and they are instead gaslit and told that they are hypochondriacs or sometimes
are misdiagnosed with conversion disorder, something they wanted to diagnose me with
as well. And to the people who are still sick and undiagnosed,
for as long you can, and as hard as you can, keep standing up for yourself, keep advocating
for yourself. You know your body. You know when something is wrong, only you
how much pain you are in. Thanks for listening, I’ll see you eventually,


Kristi Evans · May 1, 2017 at 10:25 am

Please. Go back and TELL the doctors! Try to help those behind you!!! We are dealing with this, with no end. NOT going back to shove the diagnosis papers up certain noses keeps this situation a living hell for people behind you. And fwiw, a blue-eyed, white girl has been ignored, too.

Elizabeth B · May 5, 2017 at 1:06 am

You talk so so well. Doctors can be really rude, like I have Neurofibromatosis and besides doctors not know what it is, they guinea pig me. Like I have a shit tone of café olé spots most around my groan and upper thighs. And if i got to the doctor for an ear infection they make me get naked because they want to see them.

Also NF causes tumors and I have had and still do like 10 growths in my breasts and one in my stomach and my primary refused to see me for 3 months (she had appointments she just didn't think it was needed) I also have breast cancer in my family so what the hell

Silver Thompson · May 8, 2017 at 9:16 pm

Glad you got diagnosed fairly early. Glad you fought for yourself. It's so hard and takes such a toll on the body and the esteem. I've got years ahead with the waits before the "rubber stamp" … I'll be 38 this month… 21 years of struggle. Thank you for sharing

not cool · May 8, 2017 at 11:26 pm

I also had a doctor say the exact words "what do you want me to do about it?"… I just went home and cried.

Rose Johnson · May 19, 2017 at 12:15 am

Well…I am not one to cry but this had me tearing up. It spoke to me on a personal level because I am currently trying to get a diagnosis for myself as well and it is a very discouraging process. I just actually said to a friend the other day that I was done seeing doctors for now because it is just getting too hard. I too have had doctors tell me that I am too young to be in so much pain (I am now 29 but started experiencing symptoms when I was 24). Your video has given me the courage to continue to seek a diagnosis and to advocate for myself. You seem to be a very strong person and I am sorry that you had to go through this. Thank you for making this video.

Hannah Robin · May 23, 2017 at 11:13 pm

I'm sick of this happening. I've had my diagnosis of hEDS taken away from me because a rheumatologist pinched my skin and from that said that my joints aren't hypermobile enough – that's all she did. A week later I saw a pain management doctor who said that there was nothing they could do for me – I spent the next 24 hours crying on and off and almost started binge drinking and doing illegal drugs – I already have liver disease so it wouldn't take long to kill me. I had to fight off suicidal urges. Because I realised that this is me now.

I'm 18 and have used a wheelchair for almost two years now. I've been doing physio for six years. I have severe neck pain which is getting worse at a scary pace. I'm spending a lot of my time doing physio. I can't do anymore than I am doing. My pain is at such severe levels that I lose consciousness from it and don't bother trying to get help when I feel that starting to occur. There's no point – I'll just get ignored again.

I've decided to stop trying to get help – to stop fighting for medical professionals to help me. I'm done. My body can decline until I die – I'd rather enjoy life as my body gives up on me than leave appointments sobbing because I thought they'd help.

Araceli1199 LS · May 27, 2017 at 11:56 am

So similar to my story 🙁

ReineDeLaSeine14 · May 29, 2017 at 4:23 am

Don't forget too fucking female.

Raphael Ferrero · June 16, 2017 at 2:00 am

Love this video. Back in 2006 I was having awful stomach problems for as long as I can remember. I had "doctors" (yes quotes LOL) telling me it was "all in my head" that i'm being bullied in school, growing pains, etc etc. Even had one stupid Dr tell me I have Crohns and need to have part of my colon removed. Never made any sense….fast forward to 2009—a Dr FINALLY knew the answer…I was lactose intolerant. Yeah…just that. That and Acid Reflux smh. This whole medical world is so fucking scary. Making money on people without even an inch of care on their patients.

Hailey · June 26, 2017 at 1:25 am

This meant so much to me. My own currently-undiagnosed journey has been hard, and your story has made me want to keep fighting for answers and for help. Thank you, and I wish you the absolute best in your life.

Jynxedlove · July 7, 2017 at 8:51 am

I'm a stubborn hard headed SOB. I hate getting mistreated by anyone. I've also had my mother tell me I was jealous of her and my father, both chronically ill, or a hypochondriac. I was told a million times, "Eh, walk it off". So at a young age, being a mule, I decided to listen to myself and my body first.

So I guess I wasn't too surprised that I refused to listen to my old GP when he told me "wrists just don't do that", and I refused to be happy with my rheumatologist who can't decide if I have JHS, or fibro, but after six months still hasn't gotten me the geneticist he said he would.

I got myself and set up for myself an appointment with an Ehlers Danlos expert who works out of the same hospital as a genetics lab that specialises in EDS.
I know my body well. If it isn't EDS, I will be shocked. Because EDS covers seven other separate diagnosis I've gotten and I hit so many of the markers for HEDS. It only isn't as symptomatic in my skin, but any other system falls into the symptoms lists.

roxanne vila · July 9, 2017 at 9:50 pm

So I had some anxiety before watching your video…this video made it worse, because I've been dealing with idiot doctors as well. I'm not where you are physically but my health has declined hard within the last twoand a half years. I was finally diagnosed with Chiari Malformation two years ago, not EDS…A lot of people say I if you have Chiari then you have EDS or vice versa…And doctors don't listen to me. I'm 31, I look 21 so that doesn't help either lol But uuuuuugh I feel you, glad you were finally diagnosed! Stay strong.

blademaid · July 13, 2017 at 3:13 pm

New EDS subbie here 🙂

IrisLovesBooks · July 31, 2017 at 1:36 am

It always makes me cry, when I hear/read about peoples experience with, excuse my language, shitty doctors. My primary doctor is the best there is. When I tell him my symptoms or about some explanation on what is maybe causing them, he listens. Really listens. Though we haven't figured out everything (chronic pain) I walked out of his office just days ago, with 3 diagnosis and a "you're not rheumatic". He gave me a prescription for pills, that numb my nerves (polyneuropathy) and told me I was really having gastroparesis. He said, that I should enjoy my life as far as I can. He actually cares about his patients. He's 61 now and they want him to retire. He says, he'll work until he needs to stop legally. He'd like to keep working until he's 80+. I'm so glad to have him. He might sound really tough and direct. (when my mum gained weight, he immediatly said he noticed and she needed a blood test), but he will never harm you.

stitch _andherhuman · August 13, 2017 at 6:15 pm

Thank you so much! This gives me hope for an answer ❤️

LGBT Rex · September 24, 2017 at 5:25 pm

Oh wow. It looks like I'm on the same path you were on. First guy I asked (a chiropractor, mind you) told me it's because of high arches. A few months later he changed his mind and said no, it's because you're calcium deficient. (Which I am not. Blood tests for calcium put me in the normal range.) No, wait, it's because you have bad posture. (My knees lock involuntarily. Hyperextension in my SI joint making my legs all twisty. Suffering.)
My question is: what the hell are we supposed to say when the doctors ask us "what do you want me to do about it?" What kind of question is that?!

Sophia Leah · October 1, 2017 at 11:10 pm

i completely understand this. my old primary dr said 'you have conversion disorder' after i had shaking episodes from my POTS that dr's thought were non epileptic seizures which apprently automatically mean they are from 'stress' and thats the only issue at hand -__- right okay. stupid dr's … all before i was diagnosed with POTS) and completely disregarded all my other issues,the cavernomas in my brain,didn't even mention they found a brain herniation (most likely chiari, as i have all chiari symptoms) and also disregarded my severe joint and muscle pain and joint swelling at the time and a variety of other issues and symptoms. little did i know 'my joints popping out of place as i told them' at the time i was actually dislocating and subluxing them which was very painful and i've always had stomach issues all my life (IBS) and random things that now that people have said about my skin add up and all the injuries and characteristics i've had since a kid all add up. i'm still waiting to see a geneticist the dr who did for tilt table test for my pots dx actually suggested it it to me as being a possibility,i had come across it before that but didn't really look into it myself but when he suggested it i looked into it and it made so so much sense.

If only more dr's took their patients seriously,alot more people would be in a better place physically and mentally 🙁

Fables 456 · October 2, 2017 at 7:36 pm

Could you possibly do a video of EDS and having a sex life ; and EDS and having biological children. I'd be interested to hear your thoughts.

Arizona Sky · December 7, 2017 at 3:45 am

My face turns purple after 10 minutes of throwing a basketball around.

D S · December 10, 2017 at 5:30 am

This meant so much to me. I'm speechless. I've constantly been told that it's "growing pains" and my ability to pop my hip out of socket while walking is just because I don't exercise enough. And I'm so tired because I'm lazy. All the tests have been normal but I know it's EDS. So thank you.

moppleinga · December 10, 2017 at 9:18 pm

eurgh.the uk has a free healthcare system-fab…but the gaslighting is insane. how do you say to a doctor..err..that neurologist did nothing !! how much money does it waste. you fall out with family as never fit in-the minute you even try to push the face changes to that knowing look of heres a hypochondriac..its humilated experience for youngsters. they treat you with such disdain and neglect-nurses aswell-they show contempt. then when something clear dont get healthcare because of that stigma they hold. and yes thats happened to me several times where ive been refused care and it was potentually very dangerous..if anything big were to happen..
i have to laugh at all the signs of 0 tolerance to about to patients? gaslighting is emotional a professional setting, it should be disciplined when noted just the same.
the things ive been told are horrendous and abuse-i never know what ive done to cause such animosity towards me and be less worthy of medical care. and yes, im the last to go to the doctor because of this.
you know..when ive said im worried-better to explain to me why the symptoms might be there and reassure me..dont start being aggressive and think your egos threatened by a patient not being convinced theyre ok by your complete silence.

CuteAsAllGetOut · December 24, 2017 at 3:11 pm

Thank you for making this video! I am currently dealing with an undiagnosed chronic illness, and its encouraging to hear that other people have been where I am now

Stacy Spoonley · January 3, 2018 at 9:11 pm

First GENETICIST only acknowledges hEDS and said I DIDN'T qualify ONLY using the Beighton score
Second geneticist said I qualify using Beighton but no doctor, especially a geneticist should rely on that alone bc of the different forms. Actually read my MRI reports, and my scarring. And fracture xrays. And my ct scans. And my blah blah blah. So at 30, after my team wished they could send off for the labs themselves, I will finally know. Thank you for everything you do and making us home bound feel not so alone.

rierie c. · January 18, 2018 at 1:51 am

Thank you diagnosed 3 years ago

rierie c. · January 18, 2018 at 2:20 am

Dr Blair grubb….leading POTS specialist in Toledo o hio, found I had POTS…but then he found the ehlers danlos ….I was happy to know what what wrong with me, then sadden, I am in a LOT of pain, with swelling of the KNEES, IM a hot mess

Rae · February 9, 2018 at 4:37 am

i'm getting lab results back in a few days; this video is helping me cope with the time and makes me feel less alone 🙂

Photography adventures · February 14, 2018 at 10:29 am

I have been diagnose to hypermobilty in all joints but nights a cry in pain all night when I go doctors that say it growing pain even though painkiller dosnt even work

Mikki Capra · February 14, 2018 at 3:19 pm

I am a little late to this party, but this story sounds like what I'm going through! I can't believe that I found someone like you who can understand what I'm experiencing! I'm having to fight right now because I am overweight and doctors think that's the issue.

Rebekah Castro · February 18, 2018 at 5:15 am

I have watched this video so many times, but this time I knew how awful a lot of neurologists are.

KC Earth Kid · February 25, 2018 at 6:29 pm

You…are everything.

Sarah Wiemer-Mattheus · March 10, 2018 at 5:27 pm

… Had to turn 36 to get diagnosis after developing symptoms more than 20years ago, a hip surgery that went horribly wrong… My story is so frustratingly parallel to yours. Doctors wanted to give me psycho drugs in stead of pain killers. No propper Investitionen until i took it in my own hands. Lots of research and i found a specialist. Long story short: a week in hospital, shit load of tests, that mostly turned out positiv and diagnosis was confirmed, inclusive a rare heart disease, conmon in EDS. This was last week and I'm still too angry to visit my old doctors, this could bring me to jail as I know how to use my cane (wich I don't need in theier opinion) in many different ways. But I will visit them! I can't stand the fact that more non-diagnosed EDS people will visit them. Spread the word and hit rheumatologist hard!

Badass Activist · March 27, 2018 at 4:38 pm

still just blown away to have an answer after 8 years of being disabled, and classified as severely disabled. I spent two years in bed, lost my memory, and just so much more. It just feels different somehow knowing what this is – might not change a lot knowing with daily life, but sure does help my spirit.

Lawren Haggerty · March 28, 2018 at 4:06 pm

I'm bawling my eyes out. I'm 23 and our story is almost like a mirror image. I'm going to my doctor for a referral to a geneticist as soon as possible.

Thank you so much. You have no idea how much it means to me.

Shay · March 30, 2018 at 2:46 pm

I'm on my way to getting an EDS diagnosis. My spine vertebrae are so close together and on top of each other that it took two hours to get a spinal tap. They went through two vials of lidocaine to try to numb where the needle was going in. I'm hyper-mobile in my wrists, fingers, thumbs, ankles, hips, and shoulders mainly. I have high arches in my feet, soft velvety skin, I bruise easily and I get bad petichae from simple things. I take super long to heal. My spinal tap was almost a month ago and I'm still healing from it. My next step is a neuro ophthalmologist because I have papilledema, then I'm going back to my primary to be sent to a rheumatologist and then a geneticist, hopefully. He wants to rule out other things but he isn't denying that I more than likely have EDS. I'm sorry your story has been so heartbreaking for you. I'm praying I don't have the same outcome.

Jared Walton · April 9, 2018 at 4:31 pm

My heart goes out to you for the long trial you've gone thru just to get a proper diagnosis. You're videos are very helpful. Please continue the great work you are doing. Advocacy, empowerment and self-confidence despite trials…everyone benefits from your vlogs. Thank you.

Alyssa Funk · April 16, 2018 at 7:35 pm

Amazing <3 Thank you for putting this out there! I have been labeled as a hypochondriac by my husband and family so I had stopped "complaining" about my symptoms, after watching some of these videos about EDS I am having the courage to take my research to my GP. Wish me luck!

lorie williams · April 17, 2018 at 9:45 am

Love this, I know how it is to get diagnosed it took me almost 20 years. I would love to go back to all those Drs and show them the paper with the diagnosis and let my little bird fly.

nick p · May 12, 2018 at 11:53 pm

Yas boo i feel u love.i wear sneakers with dresses haha

nick p · May 12, 2018 at 11:55 pm

Yesssss i was also having pain and eye problems .check out my story .i def understand. It took me 24 years..i wasnt able to walk or hold myself at work cutting hair 12 hrs anymore. I relate here

Jahlee Su · May 16, 2018 at 6:08 pm

Thank you do much for this video!

Kimberly Eisner · May 21, 2018 at 1:41 pm

You are so inspiring! I've been suffering with pain essentially my whole life. From needing daily back rubs starting at 7, extreme debilitating "growing pains" as a kid, to DDD (degentitive disc disease) at 19 – after being told by a rheumatologist that I'm too young for back pain and arthritis, and being told by every doctor ever that I am just a pain pill seeking young "millennial "… I finally found your page, among some others, and have begun my journey to diagnosis. Its possible that I don't have EDS, but i have experienced almost every symptom you have described, almost every symptom each website and YouTuber and blog has talked about. I'm so nervous, and suck at self-advocacy. So thank you for your videos and your strong, inspiring personality. ❤

Caitie F · May 23, 2018 at 1:14 pm

Watching this video was so familiar…I've had so many of these symptoms. But I tested negative for all the testable EDS strands and all testable known connective tissue disorders, so I still have "unknown connective tissue disorder".

TwiSteDCBloSsoM · June 5, 2018 at 2:26 am

I'm in the diagnosis stage for something right now.. IDK what… People say Lupus, or EDS but then I never test positive for anything, just get diagnosed with other things like Fibro, supposed Solar Urticaria, Epilepsy, then the things they diagnose me for, never act like they should and then they change what it is…
I've almost given up on mentioning pain because it's just so every day that I don't think about it other than as a constant annoyance, that the constant pain and constant headaches, constantly feeling like my neck, ankles, knees, fingers etc need to pop, so I shift around constantly, is all just normal…
I don't know what it is I have yet, but this makes me hope that if I bring it up, that hopefully it could be ruled out.

MyArtJourney · June 7, 2018 at 8:13 pm

I'm waiting on a rheumatology appointment. I've had chronic pain for 3 1/2 years. I thought this appointment would give me an answer, I guess there is nothing to do but wait some more. 🙁

Mollie · July 4, 2018 at 10:57 pm

Is someone’s face turning red after running a symptom of EDS?

Living with Stripes · July 14, 2018 at 2:16 am

I just want to thank you so much for sharing your story. I've known something was wrong with me my entire life. I'm always in pain, I fall constantly, I have severe foot problems and have had surgeries similar to yours that didn't work, and the pain is becoming so overwhelming that I have barely been leaving my house. Then one day I was watching random videos on YouTube and I somehow found this video on your channel. Everything you talked about sounded EXACTLY like what I have been going through. I had never heard of EDS before, but as I did more research I realized it made so much sense and might actually be why I have all these issues. I have an appointment in a couple of weeks with a Rheumatologist and was planning to ask about a possible hEDS diagnosis, but then I watched your video on using the genetic tests like 23andMe to see if you have EDS. My mom did one of those tests through FamilyTreeDNA recently, so I got her permission to download her raw data and uploaded it into LiveWello….and there it was. She has a heterozygous mutation on gene COL5A1, the gene for Classical Ehlers Danlos Syndrome. I'm taking those results with me to my appointment at the end of this month and hoping that I will finally receive my diagnosis. I would not be this close if it had not been for your videos, so THANK YOU SO MUCH for everything that you do. <3

Jane Justice Doe · July 30, 2018 at 5:08 pm

Hello. My name is Justice and I've just started my journey of trying to be diagnosed with EDS. I'm slowly feeling my legs and body get weaker. I've been to so many doctors and it's taken forever to get to get to this but we don't even have a geneticist that will take my age (21). I'm really having the same issues and I truely thank you.

Shaye Eller · July 31, 2018 at 6:56 am

I got: you’re too young to be sick, there’s nothing wrong with you, it’s all in your head, and my favorite: “You’re just depressed” and then sent on my way. (OKAY YES I AM DEPRESSED AS WELL DID YOU KNOW THAT’S A THING YOU CAN TREAT?)

I found out earlier this year that I had EDS. It took 20 years from the time I became ill (as opposed to just having weird things wrong with me like almost passing out every time I took a shower.) Funnily enough, you can be in your late 30’s and still be told you’re too young to be sick. No wonder no one took me seriously at 18.

I was fortunate in that we kept discovering parts of the problem: my biggest complication is cardiovascular, and I finally got a doctor to take that seriously a mere 6 years after becoming ill. (I mean my dad died of cardiac arrest at age 25; I was 24 before anyone took that seriously and sent me to a cardiologist.) Beta blockers helped that a lot, but masked some of the symptoms of POTS in the meantime.

Isobel Bedford · July 31, 2018 at 9:36 pm

It's so depressing that getting a diagnosis was such difficult and extremely lengthy process, especially when arrogant and condescending medical professionals weren't listening to the person actually experiencing the symptoms… I'm so happy you now have the diagnosis thanks to the female physicians. I've heard from so many people that diagnosing chronic illness is especially long for young women as male doctors dismiss legitimate pain and suffering as overreaction and hyperchondia. I hope the information you're giving here will help others to learn more about the syndrome and maybe even reach one of those doctors who couldn't look beyond their own preconceptions. Stay beautiful. Xx

Cassyzp · August 21, 2018 at 3:40 am

Which exam you did for finally diagnosing EDS? And could you tell me or refer me to somewhere where I could know more about the progression of EDS? My hability to walk is going down the toilet and my motor function as well, but I’ve heard EDS is not degenerative or that progresses, even though I think this is not very accurate. Also I wanted to know if this was the only test you did? my doctor asked a blood test called anti-RNP antibody, it is not for EDS as EDS is only diagnosed through genetic testing but it’s for connective tissue disorders in general as I understood. Could you share your experience with me? I have many of the EDS symptoms, the only thing the doc thinks that differs is how much is progressing and the amount of motor issues. If you want to contact me just look at the about page on my channel or “Camilla Zahn” on Facebook. This video, telling how was your struggle is amazing. Thanks for not giving up on your body and health.

Ronan Wills · August 21, 2018 at 2:10 pm

Jesus Christ. I waited almost a year for a neurologist after a car crash (because my GP wouldn't refer me until the problem lasted nine months without improvement) and if he had said "what do you want me to do about it?" I think I would have beaten him to death with my cane. Consultants and specialists can have such poor patient communication.

(Thankfully, both neurologists I've seen have been very good).

Lawren Haggerty · August 21, 2018 at 10:46 pm

23 and because of your videos, I pushed to get a referral to Rheumatology and got my diagnosis today after 23 years of being symptomatic!! Thank you! Thank you! Thank yooooou!!!

Nessa · August 24, 2018 at 6:20 pm

thank you for captioning your videos 💛

Char · September 12, 2018 at 6:17 pm

i just watched this for the first time. I'm 22, i've had symptoms since birth but it's only the last 2 years they've effected my life dramatically. Next tuesday, 18th September, i finally get to see a rheumatologist after battles and stupidly long waiting lists. I sobbed at the end of this video. I hope next week will be the first time a professional takes me seriously. I hope i find out what's wrong with me, because god do I know there's something

Leia Mithrandir · September 17, 2018 at 11:33 am

I’m 23 and recently started losing my ability to walk a few months ago. I’ve been diagnosed with JHS since I was 17, got an “official” diagnosis from the hospital at 21 and was then told “it could be EDS but it probably isn’t and it’s a waste of time to do tests for it” and that’s the last time I heard anything about my disorder. Of course, I’ve been back to NUMEROUS doctors since I started losing my mobility who just keep giving me new pain killers (that don’t work) and tell me to refer myself to physio which 1. I did before and they were unhelpful 2. Is a years waiting list and 3. Is across town and I can’t afford to travel there. I’m really at such a dead end and I don’t know what to do. I’m getting worse and there’s no support for me. Has anyone got any advice?

GUY SE MUA · September 17, 2018 at 1:09 pm

Hola, tu apellido es español / hispano?. Lo digo por si pudieras hacer algun video en ese idioma. ( y sobre lo que es o se considera discapacidad se podria hablar mucho y desde muchos puntos de vista, yo tengo fibromialgia )

N Orsi · September 27, 2018 at 5:30 pm

My team has told me to give up finding a diagnosis. Thanks for the video. I hope to someday have clarity like you eventually got.

ME en ik · October 3, 2018 at 11:17 pm

I have been where you were. Am still there really. I've cried several times in doctor's offices because they just didn't listen. My primary care doctor told me it was in my head. I switched primary care doctors after both of my parents saw her judgement and how she would stop listening as soon as i started talking about ny symptoms because she had already made up her mind. And now i am finaly getting somewhere. There are 2 expectations about what i could have. 1: i could have POTS. 2: i could be undiagnosable. I have my appointment with a POTS specialist standing. This will be a verry important appointment. Because even tho no doctor I've met so far doesn't know POTS, every single one thinks all of my symptoms are connected. So they have all looked up POTS, and agree with my theory. You are defenetly helping me get through all of this. Please keep being you and keep on making videos!

rae1957tn · October 8, 2018 at 8:49 pm

I know this is an old video but this issue is true for so many chronic illnesses.

Josephine Thornton · October 14, 2018 at 11:05 pm

I started experiencing pain as a young child, but didn't know it wasn't normal. It wasn't until I fell down a flight of stairs at thirty, then suffered six years of agonizing physical therapy in which I grew worse despite doing everything they said to do. I atrophied horrifically while doing it. Finally a physician assistant said she had heard of something and maybe, just maybe, that's what was wrong with me. They sent me to a geneticist.

Thirty years of terrible pain and another six years of agony and finally, FINALLY I had my diagnosis.

My geneticist wanted me to be diagnosed for POTS as she said I showed clear signs of it. I was sent to a cardiologist. He was an absolute bastard. Then I was sent to neurologists, rheumatologists, and of course psychologists because even with a diagnosis of EDS (I have both classical and hypermobile, it came down both sides of the family, but I am primarily hypermobile) I couldn't find anyone to take my claims of hyperPOTS seriously. Another five years until I found a specialist- I had given up already at that point but one moved to my own town! And finally at 41 years old I got my diagnosis of Hyperadrenagenic Orthostatic Intolerance.

My list of diagnosis at this point is very long but at last I'm finally being treated like my real life issues are in fact real.

I just wanted to share my story here for those that are frustrated at not finding a doctor. I tell people that I don't think Ehlers Danlos is as rare as it is rarely diagnosed correctly. But that's changing, and so quickly. Don't lose hope! I know many of you are in absolute agony but just hold on the best you can. Check out the Cusack Protocol on Facebook, it isn't a cure but it helps a great many of us immensely. Taking maitake is the difference between walking and a wheelchair for me.

When I first heard of Ehlers Danlos there was nearly nothing on the internet, a mere decade ago. Now there's hundreds of thousands of us in every support group and I have amazing EDS friends across the entire planet. My symptoms are much better managed. I am still degenerating but that degeneration has vastly slowed.

Much love and support to you all.

Joel · October 23, 2018 at 8:37 pm

Annie, thank you for this. I'm just gearing up to start proposing this to doctors and I've already felt inklings of resistance. I am so happy you eventually got your diagnosis and can move forward. Much love. <3

Crazy Silver · October 24, 2018 at 9:08 am

I will show this video to my new doctor. I have a suspected eds. They haven't tested me yet and I have had the suspected eds in my journal for 7 years now and no one want to test me. They just act like I am a junky trying to get high on painkillers 😭 Have been in pain for as long as I remember and everything you are talking about in this video and in others is spot-on. Thank you for being awesome 💖

Wan Da · October 24, 2018 at 7:34 pm

I might be a bit late to react on this video but it sounds like my journey into diagnosis so much. At the age of 7 I dislocated my ankle and from that moment on I was in excruciating pain 24/7. But according to a shitload of doctors it was all made up.
Finally at the age of 16 I got to a pain specialist that recognized my symptoms as CRPS. But the story doesn't end there. At 21 I also found out that I have a genetic version of Dystonia and EDS was also mentioned to me for the first time. A rehabilitation doctor made that last diagnosis stick even without genetic testing since my symptoms have been so obvious for him.
EDS, CRPS and Dystonia seem to be linked to each other. And I'm determined to find out.
But being bedridden without any energy makes it harder and harder each passing day.

Thank you for your video. Let's hope that these are one day limited back upon as a historical fact that has been undone…

Kaitlin Fitch · November 7, 2018 at 8:38 pm

God, I hate doctors

RebeccaSarah · November 10, 2018 at 12:11 am

“What do you want me to do about it”. I’ve had that from a doctor too… how can they think that’s okay.

lynnwrites · November 16, 2018 at 12:27 pm

I'm sorry you had to go through all this. My partner is trying to get a diagnosis for over a year and has been dealing with arrogant, self-righteous German doctors. It's no wonder sociopaths are so common in the medical fields. It scares me that our health is often in the hands of these individuals that lack empathy and have serious ego issues.

Sarah Kercheval · December 5, 2018 at 11:13 pm

I hate doctors. Hate hate hate.
They never listen when there is a real problem. They have this “hahahahaha the patient is never right”, or “it’s usually always the simplest answer” joking with other doctors, attitude that sucks if you are not a drug seeker, not a hypochondriac, not a man, not faking it, not just exaggerating, not addicted to going into the Dr for every little thing. Etc etc etc.

Retro Chiccadee · December 12, 2018 at 1:37 am

This is seriously what I'm going through right now.

Space Gay · December 18, 2018 at 12:16 am

how can you be too young for eds??? it's literally genetic??????

Irene · December 22, 2018 at 9:28 am

I have stretchy skin, people around me always comment on how soft my skin is, I am double jointed, and hyper mobile, I have really bad upper and lower back pain, my knee is really bad to the point it feels like it will dislocate, my hip is in constant pain (hip dysplasia), and when I was getting my wisdom teeth removed, although I was locally anesthetized, I could still feel the pain and after doctor injecting more anesthesia, I could still feel it!! 😭😭 idk if what I is EDs… I don’t know what’s wrong with me and it frustrates me so much.

Роберт Латковић · January 2, 2019 at 5:11 am

Doctors are shit until you point out the diagnosis your self.. Then they all start to jump around you like some fucking experts, and they don't know shit, damn Google doctors, good for a sour troath

TaylorAnd Graphite · January 3, 2019 at 4:50 am

I’m 13 and I believe I have Eds, I live every day in pain and my joints dislocate all the time. Lol

Will Pasquina · February 2, 2019 at 1:03 am

Hi annie. I live north of Boston and am interested in getting involved with fundraising to help people with disabilities. Do you have any idea who I should contact? Thanks!

Letty Lu · February 10, 2019 at 7:55 pm

I have a subtle way of it .. thanks god I never force me to wear high heels.. I use soft tennis shoes all the time When I was younger using flats with out socks made my ankles bleed I could not Walk … I rest a lot and try excercise with out weight just my own …my dad dislocated my arm when taking my hand to cross the street when I was young … and doing excercise was and is still so difficult … But if I don’t do it it gets very bad I can only be in my bed resting because I have no energy for anything

Nathan Spears · February 15, 2019 at 7:53 pm

Last time I felt 100% I was probably 9 years old.

Nathan Spears · February 15, 2019 at 8:18 pm

I have been dealing with all this for so long. I’m 34. I have been diagnosed individually with many disorders that Ehlers danlose is compromised of. I even have the rare eye disease keratoconus which turns out some Ehlers danlose patients have. My right leg has been dislocating every step I take. I can barely walk, sit, stand, without excruciating pain. I met with a dr who saw all the issues and said I think you have Ehlers danlose. My sister in law told me 2 months ago she thought I had that and I just kind of pushed it off and never thought about it again.

I am getting genetic tested on 2/25/19. I can’t wait to finally know and have confirmation.

Theo Aaron · February 25, 2019 at 6:21 am

Yesterday I had a doctor call me a faker for having knee and back pain and I want it to end and no one will listen cuz my doctor doctor said "loose some weight""your to young"

WheelieWitch · February 25, 2019 at 2:17 pm

Good god I'm so glad you didn't get that SI fusion, god damn that would have been awful. It goes badly for people w/o EDS, nevermind with D:

Charlie 2 · March 5, 2019 at 11:22 pm

I also have Ehlers Danlos Syndrome and honestly nothing in my diagnosis journey went right until I got a female doctor.

Nathan Spears · March 15, 2019 at 11:11 pm

Your channel gave me courage to do my first video about my ehlers danlos journey. Thank you!

Bonnie Strode · March 17, 2019 at 6:50 pm

I literally got goose bumps at minute 13:15, because my diagnosis story is SO similar to yours and I finally got diagnosed last year on the eve of my 28th birthday. The emotional trauma is SO real! I had severe pelvic floor dysfunction and was told that there was no way on earth that anything but a serious injury could have caused it. The two months of physical therapy (during which I was made fun of my both therapists for not being able to roll my hips in a circle) was what caused me to need a wheelchair full-time. Thank you for sharing your story! It feels so good to feel a little less alone in the world. 💗

Purple passion Freedom · March 18, 2019 at 10:29 am

I have “what would you like me to do?” just about every time I go to the doctor. Why do they say that? It’s soul destroying. I’m still fighting and won’t give up. My back, groin, hip, shoulder, foot, ankle and referred thigh pain is horrific. Nobody cares that I have classic symptoms of EDS.

wow717 · April 1, 2019 at 5:59 pm

Most doctors are absolute scum. My mom went through this exact thing in the 90s (well, not the same symptoms but the same runaround from doctors) … luckily my dad was good at research. They went to the library and found out her problems were likely due to a food allergy and did an elimination diet on their own to try to find out which one. She had been to multiple doctors and allergists. They all treated her like she was making it up.

Noelle · April 11, 2019 at 2:40 am

I hear you. And relate – I pushed hard not understanding why I wasn't normal, feeling something was wrong but got dismissed. Quietly compensated for years, one little piece at a time as it ate up my life. While most docs told me nothing was wrong. The gaslighting is unreal and there's no excuse for it. Thank you for sharing your story. <3

Charlene B · April 14, 2019 at 1:29 pm

This should be shown to all doctors everywhere

Mother of isopods and bugs · May 25, 2019 at 10:46 pm

I get it! I am still waiting on a diagnosis!

KweenyTodd · June 15, 2019 at 9:36 am

I will level with you: I have a lot of symptoms of EDS. My friend who has it asked me to do things like show her my hyper mobility and said it looks real good. But what you went through on this video I have already been through. I'm not looking forward to more fighting. I'm scared, angry and tired. I have fibro, reynauds and other stuff that already makes a lot of doctors roll their eyes at my pain.

I am in pain. Their eyerolls dont change that.

But I needed this video. I cried watching it. I am so sorry you had to feel this too, but I am glad you can share your story. I will keep watching this every time I need it. Like when I go to my next appointment. We shouldnt have to fight like this whem we are already suffering. But this is the health care system in America. Also: I'm a Canadian living here. I have the perspective most Americans dont. That it CAN be better. But you will still have to fight. Even doctors in canada have stigmas.

Ja Series · June 18, 2019 at 10:51 pm

I have had doctors treat me like that. I have had one doctor tell me that my medi-cal didn't pay him enough to treat me. Why did he even see me?!

Katherine Müller · June 21, 2019 at 3:42 am

Me, trying to look as vintage as possible because damn if I’m going to get my disability in my way of wanting to wear heals: * is in pain and has to sit down *
Someone: why do you wear heals then if they hurt
Me: I mean if I’m going to be in pain either way, might as well look good while doing it.

emily ohara · July 10, 2019 at 1:55 am

can i have your permission to use this video for a school assignment? i have to write an informative essay, but i would like to show this in class after i read it to the class.

Scott LEGO Fowler · July 31, 2019 at 4:34 pm

I feel your pain. I have the Kyphoscoliosis version of EDS. I'm 46 and I'm confined to a recliner. One doc said that, and I quote, "I dont know what Ehlers danlos syndrome is but I know you don't have it". There are no more answers for me. All I get now is that common phrase "you're going to have to live with it". I've had 45 ortho surgeries to date. I take 3,200mg gabapentin, 90mg morphine and 20mg oxy a day to fight pain. I have 11 disks fused in my back, left ankle completely fused and my right wrist fused. I went 20 years before they said hey. I'm 46 now and trying to survive. I like younger docs because they know and understand.

GnosticMindTrain66 · August 17, 2019 at 8:47 am

You know, I had a lot of bad doctors, both mental and physical, but I guess this would explain the bad physical doctors I had to deal with. I'm so sick of the medical field, no wonder why people trust in feelings over facts. I'm skinny, mildly flexible, curved back, and this all went underlooked. How? I don't know.

DVF · August 28, 2019 at 3:46 am

My daughter was also misdiagnosed with Conversion Disorder.

Kimberly Williamson · October 1, 2019 at 5:21 pm

I am so sorry. I have been treated like a joke by the medical community. My primary however, thankfully, has been very helpful. I am at the point you were in the 9 minute mark. I have no idea if it might be EDS, but I have to do something. I'm 40 and I've been too young for this kind of pain since I was about 12.

Stormchasingirl 1 · October 3, 2019 at 12:33 am

I gave up with doctors. I’m 32 and now have finally found a pain management naturopathic doc who only accepts cash mind you who will listen. Hoping to get a firm diagnosis soon. Sadly my aunt is 63 and has the same symptoms and has never been diagnosed.

meetmeonplanetzebes · October 13, 2019 at 5:20 am

also LOL ur doctor outfit scene change

Phoenix Astra · October 31, 2019 at 4:13 pm

My psychologist says he thinks I have EDS and I have been housebound for 2 years with a bunch of other conditions, walking minimally causes me pain or my legs to stop working entirely, I have fell quite a few times with minimal walking. I also get all these symptoms and red rash on my face but I don't have the flexibility or 'stretchy' symptoms. Could I still have it?

My doctor seems to neglect things as yours, and I have quite a handful of other diseases as well–my arms, wrists and shoulders stop working. Especially my shoulder back neck and knee feels like is dislocates. My fiance constantly has to fix my back. As a kid and teen I would have leg and back and neck pain so severe I would be crying at night after work and feeling faint

HoneebunnySapphire · November 4, 2019 at 9:56 pm

Thank you for sharing this. I don't believe I have EDS, but I'm almost certain that I have fibromyalgia, and I've had to deal with similar things of just being ignored by doctors, told I'm "too young for that", and fighting just to get referrals. It's heartening to hear of someone who's been through something similar and persevered, and actually got a diagnosis proving what you knew was wrong.

Siria C. · November 9, 2019 at 11:50 am

In the last two years I started suffering from knee pain, ankle pain, back and neck pain, headaches, vertigo, dizziness, tachycardia, hypertension, eye problems, tinnitus, sensibility to lights and sounds, fatigue, shortness of breath, hormone imbalance, digestive problems… Everytime they say it is just anxiety or depression or "you are just like this, you can't do anything about that" . All my life i had hypermobility, i tought it was just normal to dislocate things in my body ahahah 😂 now i am 22 and in the last 2 years i went from doctor to doctor without answers and an accurate diagnosis, they just managed the symptoms. I want to see an orthopedic doctor, this video gave me hope, thanks for your courage, you can inspire a lot of people ❤️ i am one of them 😂❤️

Lucy Attackbot Licious · November 14, 2019 at 5:06 pm

man doctors seem to have massive egos that mean every idea must come from them, and they tend to reach conclusions based on their initial assumptions and it's generalising… my current psychiatrist is a woman though and she is terrifyingly apathetic and i'm having to move area to escape her, and i also have no faith in my gp who wouldn't get my gf a bridging prescription for gender hormones. women tend to be more likely to listen i think and i was so excited to find a gp who was willing to admit when they didnt know stuff… but they bristled against us finding the nhs guidelines and such things for them. wtf. still, the gp before them threatened to call the police on me for sitting on the floor in the roomiest reception room for a gp i have ever seen. ghlkjg;i[ou;klhjlkj they then sent a letter saying i was banned. wheee… so this new gp was kinda exciting sobbb

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