Ehlers-Danlos Syndrome: My Diagnosis Journey [CC]
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- Опубліковано 11 вер 2024
- I started my diagnosis journey at 23 and finally got answers when I was 26; almost three full years of being in and out of doctors and test after test, appointment after appointment. For many people, this process can take even longer, for similar reasons to mine taking so long; doctors who either did not know about EDS, had prejudices about what EDS should be or look like, or just lacked any patience or understanding at all and wouldn't listen. This experience is not isolated to me or to people with Ehlers-Danlos Syndrome.
People on year long diagnosis journeys perform unacknowledged physical and emotional labor in order to find answers and seek treatment and appropriate medical care. When someone tells you they are "undiagnosed" DO NOT think "hypochondriac", fight your own prejudices. Diagnosis can take an extremely long time but that does not mean that they are not truly ill.
*Spelling correction to video: plantar fascitis
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Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer Latinx disabled woman and uses she and they pronouns.
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I also had a doctor say the exact words "what do you want me to do about it?"... I just went home and cried.
Me too. How can they say that to someone.
The doctors job is to make their patients feel better, these imposters need to be held accountable. Good doctors care about their patients and do their best to help them
That’s what my Neurologist’s PA pretty much said to me, she was like oh that’s a orthopedic doctor thing! Ugh!
@@bunnybaker2289 All the good doctors are in retirement and all we’re left with is quacks!
I just wanted to say thank you. I'm currently 16 and i'm almost positive i suffer from EDS though due to my age 5 doctors have called me crazy. I also had surgery for my flat feet which the doctor said would be a 3 day recovery that has now turned into a 3 year recovery. Most days its hard for me to get up and go to school. i've been kicked out of my honors classes because the teachers say i cant make up what i've missed. what they refuse to understand is that when ever i write or carry my book bag my shoulder dislocates and then i get in trouble for the sound my shoulder makes when i pop it back in. i feel like i get flares biweekly and things are only getting worse. I was ready to give up until i saw this video you have given me a ray of hope so thank you.
Mackenzie D yes my surgery flared me up ..i also flatlined and got infected...took 2 years recovery..was also walking on a ripped tendon 8 months before they believed me .i finally wasnt able to walk ....
Mackenzie D the backpack shoulder thing also happens to me and I also get in trouble for popping it back in
My son has very similar issues and I started giving him maitake (via the Cusack Protocol) and he greatly improved.
See if you can keep a separate set of books at school. A 504 plan will force them to allow you to do it. Since he doesn't have an official diagnosis yet (I do), we used his anxiety disorder and ADD to make it so he could get out of classes five minutes before people (to avoid crowds supposedly but it was really it was so he could get to his locker to get the extra set of books before each class so he never had to carry more than one at a time).
I hope you keep looking for more doctors. Hopefully you’ll find one that takes you seriously
Mollie you get in trouble?
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.
I'm 15 and just recently got diagnosed with EDS 3 months ago and on Friday I got the word from a new orthopedic doctor that I'm now considered permanently disabled. My symptoms started right when puberty hit. My pain got worse and my joints began to pop in and out of socket and dislocate randomly or whenever I moved around/walked. I've been to many doctors and it took me 2 1/2 years just to into the geneticist to see what really is going on because I knew about EDS through a lot of research. This is a really shortened version but I love your channel cuz I relate so much only I'm so much younger lol.
@Meg Beagley my daughter and 15yo autistic granddaughter were also just diagnosed too. Plus with the POTS. God bless you in your journey. Wonderful to get your diagnosis so young. Wishing you the very best.
The only way to stop doctors from acting like devils, is to ALWAYS take someone with you to an appointment. Your partner, a close friend, a parent, a sibling....just...don't ever go alone...And have that person who is accompanying you TELL the doctor how worried they are about you! This will make the doctors feel like 'social control' they are more careful because there is a 'eye-witness' with you!!! I have learned this the hard way, but eventually, it works every time. When I was single my mom would go to me to doctors. Then, when I met my now husband, from the beginning up til now, for more than 6 years, he is almost always joining me to a doctors appointment. When needed, he jumps in and discusses with the doctor how they are going to help me, and then they always do their job. But most of the time, his presence is more then enough. Don't go alone to doctors!
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 UA-camr 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. ❤
Also, wanted to add that I don't mean any disrespect when I say you're inspiring. I just watched someone else's video where he said "Just because I live with my disability doesn't me I'm inspiring." Or something along those lines. And naturally I began panicking because not even an hour earlier I'd commented saying you were inspiring. 😮🤦🏼♀️
Honestly watching videos on Eds in general has been life changing, and your courage and ability to self-advocate even though multiple doctors told you were wrong for self diagnosing is what I find inspirational.
Hopefully I haven't over explained or dug myself deeper into a hole! Definitely didn't mean any disrespect or anything of that nature!
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.
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.
Please don't stop fighting.
gosh this video is so powerful!!! so many of us have gone through the same thing... it's awful... thank you for making this video!! it gives us without a diagnosis some hope, thank you annie!! best wishes
Thank you! I'm so glad! Everyone deserves answers!
I am listening to your symptoms like "wait, I thought this was normal ?" I am trying to know where my pain comes from but I keep being told to just stop whining.
I am afraid by those doctor who will just ignore the possibility of one of the numerous disease that can affect your joint when you are young. It sound like they want to look smart so bad, they jut won’t search, but tell whatever they can think about on the moment.
It sucks that there's no test for type 3. Even though I've been diagnosed by 2 doctors that have extensive EDS experience, every time I see somebody new I'm always so afraid they won't believe it. I was once told there was "no way I could have EDS because I don't have blue sclera". First dislocated as a toddler, then none til my twenties (but lots of other issues, all seemingly unrelated to each other). Diagnosed at 23.
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!!!
Amazing
Soooooo glad that you kept up and continued to self advocate! It's incredibly difficult to keep on when doctors are slamming doors in your face, gaslighting you, telling you you don't know what your own body feels like. I've been to almost 20 doctors so far and I have learned to request female doctors now when I can. I could not believe how most of the male doctors would push through the appointment, hardly giving me opportunity to explain my symptoms or ask questions. They didn't listen. Luckily, my main doc is a male rheumatologist who I love. He listens and always tries to help. I truly hope that you continue to receive good care and that you're able to live a better life now that you have a diagnosis 💜
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.
I've just recently been diagnosed with Ehlers Danlos Syndrome as well. I have type 3 with some classic type features as well. I've been searching actively for a diagnosis for 4 years at least, but now that I know what I have, when I look back on the years before that, I can 100% see the EDS symptoms that have existed through my whole life. I'm at the point where I'm about to see all the specialists I can to get good care. I've been through the "you're in pain bc you're overweight" (Despite being a kid, very tall, and losing weight bc of pain when eating). I've been through "you're making it all up." I'm so glad that you're on youtube, Annie, because I really look up to you a ton. I hope that, at some point, I'll be able to meet you :)
It's so nice to just lay here in bed, rolling around because of undiagnosed excruciating pain, listening to someone talk about things that I can actually recognise and relate to. It's soothing to know that there are people just like me and that I'm actually not making it all up; I've just been failed by the medical system and it's not my fault.
I was so happy to see that I am not the only one who didn't have the happy miraculous diagnosis most people talk about. I was around 13 when I first dislocated my knee, but before that I was always in pain. I got sent to a physiotherapist who we recently found out was meant to be a eds specialist. He told me I dislocated my knee because of my weight even though I dislocated it by siting on a sofa!!! He was so rude so eventually I convinced my mum to stop making me go. I dislocated my knee again in Feb 2016 when I was 14 I kicked my leg up and dislocated my knee at school which is not fun. The third time was in may 2016 I dislocated outside of Ealing Common sation in England(where I'm from) the fourth time was in my room I didn't want to go to hospital so I pushed it back in myself. I got this amazing registrar who just said to me after a really long examination "I think you have eds" but he couldn't refer me to a geneticist so I had to go to a peditrician but again put it down to my weight. She sent me to an endocrinologist who only referred me to a geneticist to shut me up. Well I got my diagnosis last me and finally I can tell people why normal pain killers don't work and that I AM NOT JUST CLUMSY!!
Omg I'm going through the same thing right now. I've seen sooo many doctors and had so many tests done and I have just now discovered EDS is an actual thing and I'm sooo nervous about even bringing it up that I might have EDS. I've been dismissed so many times, told its just anxiety or its "all in my head"
Karlona W when I suggested EDS I was so nervous because I’d been knocked down by doctors so many times that the doctor immediately went to anxiety and prescribed me antidepressants (which I didn’t take). They finally agreed to give me a rheumatology referral this week.
@@rebeccasarah4362 What on Earth is wrong with doctors? Seriously, I'm sick of them. No wonder why people trust in feelings. Sometimes your feelings are facts, and those people doubting you who think they have the facts are wrong.
Same here, try to bring eds up to my doctors and they cut me off before try to explain it and said it just psychosomatic ad refused to do another test, and go home crying feels like hypocondria
Your experience with doctors is SO similar to mine. I am at the point of not going to doctors anymore because over 90% of the doctors I've seen have made me feel like shit about myself. Why can't they listen? Why would I want a life of this much pain and disability?! Thank you for sharing
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
Can I just say I'm happy to see a video from you because I'm *assuming* you're feeling better than you have been over the last few weeks, I was kinda worried. I identify with the weight thing. I can understand that weight is a risk factor in joint pain but no one took me seriously when I was saying "okay...but my wrists are weak. I can't play guitar. I'm studying music. My shoulder's hurt. My back hurts. I'm overweight, but I'm not THAT overweight."
I wish doctors, especially General Practitioners, would understand that they don't know EVERYTHING. I've had my GP mistake CFS for FM. Doctors aren't perfect, they're people. But perhaps they should try harder to empathise with the pain and struggles of their patients.
Doctors are supposed to be a person we go to for guidance and help, people we can trust. When they condescend us, patronise us, and blame us, it's emotional abuse. Nothing less. I told my GP how I was referred to my local Community Musculoskeletal Clinic and the clinic was closed on the day of my appointment. I tried calling back. They didn't get back to me until I was out of the country. They booked me another appointment, via mail, which obviously I didn't have access to. Then when I went back to my doctor, he said "oh, you really should have been seen earlier. I'll send you back. Make sure you go this time. Because you really should have gone last time."
I left feeling like I'd been so wronged.
HannahLouisiana yeah i have spina bifida not eds and severe chronic pain and alot of the doctors i have seen always blame my pain on my weight like i know its not good for me but cant there be something else besides my weight thats causing it? im so tired of hearing it!
I am SO OVER doctor's using my weight as a justification for ignoring my health issues.
I remember saying to my doctors - "yes, I am fat... but my wrists and fingers aren't fat, so why do they hurt? Why do they lose strength?" It's so hard to get doctors to take you seriously when you're ill while overweight. :(
Alexandra Pentland Not to mention the fact that regardless of how you became overweight (which we know can be caused by some medications) sometimes you can be too ill to lose it. It takes a lot of energy and physical movement to lose that kind of weight AND it also has to be consistent. If I have flare ups that last for up to a few weeks, who knows when I'll next be strong enough to exercise.
You are why I keep fighting for the diagnosis. So many similarities in my experiences and yours, especially the doctor that said, "what does you expect me to do for you". My 1st pain management doctor did that right before telling me my brain was what was causing it because I eat too much. By the way, the guy never asked me questions, touched me to test mobility and pain, nor did he order any tests (side note: I reported him to the insurance as he was a preferred provider...and now he is not!). I found another PM doctor who found several issues in the cervical and lumbar area with MRI testing. I am fighting. I have a total of about 14 specialist, and still waiting for the genetics but I have someone who is used to working with an EDS patient, so I feel confident I will get that referral soon. I cried when watching your video, and I want to let you know you are strong...and pretty awesome for making this. Thank you, really.
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.
This is literally one of the best videos I have ever seen!! 👌🏻
I am sharing it with the only EDS community we have here in Iceland that I started after years of "misdiagnosis" and pain and hearing similar stories from others!
We all shared the experience of ignorant doctors and how our country being so small made things so much worse to get any help!
I am at the beginning of my diagnosis journey (well, if you don't count the 10 years of believing I had fibromyalgia) and your story has given me the extra strength I'll need to advocate for myself. I think we forget that doctors work for us. They are in our employ and we can ask for referrals and there is no reason they can't grant them if it's a reasonable request. Thanks for sharing your story. And for warning me about the foot surgery. I also have to see a podiatrist about my flat feet and I'll definitely think long and hard about any corrective surgery.
Only 2 minutes and Jesus that's all me.
You go, Annie.
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 💖
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.
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
I was seeing a geneticist for an unrelated issue and after just casually talking to me about my health she set me up to be tested for EDS markers. I’m 26. I’ve been dealing with these issues all my life and have been trying to get it investigated for..atleast 3 years now? Finally someone listened.
Thank you so much Annie for sharing this with us! Just last week I got Officially, Officially diagnosed with EDS and I'm so happy. I'm 17 and have been experiencing severe pain ever since I was 11. I have been searching for a diagnosis for about 2 years now and I am so relieved. I found the part where you talked about the '100%' thing very interesting. While I haven't always been in chronic pain as I am now, looking back there were always times in my life where I was injured as a result of dislocating or subluxing my joints. My symptoms have pretty much existed from birth.
Also, I didn't know that resistance to local anaesthetics was a symptom of EDS before watching this video! I just went and checked it online and so much makes sense now! Its a throwback to when I broke my finger (as a result of dislocating it of course) and it was injected with local anaesthetic while the doctor tried to relocate it by bending it sideways around a pen. I remember crying out in pain and it hurt so so so much. The doctor told me I was being silly, and that since I had the anaesthetic I should be fine. It all makes so much sense ahaha.
Again, thank you Annie :)
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. 💗
I want to fight doctor #4 + 6.
Me too.
Thank you for sharing your story.
thank you so much for making this video. Honestly I'm crying right now because I can identify with the struggles you have been through so much. Unfortunately I still don't have everything diagnosed and there's still one big mystery condition floating around and I still struggle to find doctors who will take me seriously, but if it wasn't for my relentless research I wouldn't have been diagnosed with ANYTHING besides fucking "depression and anxiety", when in fact I'm autistic, I have borderline personality disorder, psoriatic arthritis, neurocardiogenic syncope, most probably endometriosis and something else which i suspect is either epilepsy or chiari malformation and some kind of mast cell issue. Medical elitism is so sad and I don't know how to improve the situation at all. Something must be changed. Why do so many young people like us have to suffer so much until we find someone who listens to us at all. It just makes me incredibly sad.
Conversion disorder, that's the new name for Hysteria isn't it? ... Ugh...
I'm so mad on your behalf that they did two surgeries on you to only make it worse, instead of looking deeper. :(
thank you for sharing your story. It always helps me with my own EDS journey when I hear other's.
Thank you so much for uploading videos. They're extremely validating, and make me feel less alone.
Every doctor should see this.
This is literally what I’m in!
I sprained my pelvis and I can do nothing for so long now.Laying in the bed whole time excruciating pain. Have pudental and pubic joint hip joint pain. My joint are moving too much even in bed. I told my doctor I may sprain my pelvic ligament . I even show the patient with similar situation as I do in internet. But The doc respond to me you are thinking too much you have no problem. And here I am can not walk or sit or move any more.
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.
You have just described my current situation and it's so validating to know I'm not alone. Thank you.
This should be shown to all doctors everywhere
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.
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.
I was very lucky in the fact that I had a pain doctor say to me, " you know what... with what you are telling me, I really think you might have EDS. Let me send you to a Geneticist. " I was seeing him for about 6 months because of a tumor in my spinal cord causing pain (unrelated to EDS). I am "lucky" in that regard I guess. I am glad the finally figured it out, and that wonderful doctor just happended to be walking by at that moment.
Hey Annie!
I just wanted to say that watching your videos and finding the Ehlers Danlos community online has helped me finally get my diagnosis. 2 years since becoming significantly symptomatic and I finally got the diagnosis of Ehlers Danlos type 3, I got this a day before 2016 ended. And I wanted to say thank you, I had been to so many doctors that everyone gave up hope on me and your videos kept me going.
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.
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.
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.
I'm glad you're making this video and that you finally got a diagnosis. it's really frustrating to talk to people about how doctors can be wrong because it's like people see them as perfect creatures who can do nothing wrong and if they do they "did their best". my story is not nearly as horrific as yours, but i would still like to share it. i have had symptoms of bipolar disorder since i was 13 and was not diagnosed untill last year at 19. and it was not because i didn't ask for help. i gained about 70 pounds from age 13 to 15 because of depression. i used to be skinny af (still healthy). but when i went to my doctor he told me that my problems were caused by my weight so before he would send me to a therapist i had to loose weight and completely ignored it as a symptom. it wasn't until i dropped out of school i got to talk to a psychologist (even then it took 6 months till i got a therapy session) and she brought up bipolar disorder after just three sessions and i was diagnosed shortly after that. i still struggle a lot now because of all the years i've spend being mad at myself because i thought i had caused my own problems. i'm 20 and i haven't finished school yet because of this shit. i always doubt my own feelings and have difficulty reaching out when i feel bad and my self esteem is close to zero. i am working on it and my psychologist is the best so i'll be fine in time i think. i'll just have to get used to the fact that i have to take things a lot more slowly than my peers.
Thank you so much for telling this story. I've been in pain for years; most of my life actually, but much worse after each of my 4 babies. By the 4th pregnancy, I had to crawl up stairs, could barely turn over in bed, and I am told that I used to wake up my husband from constantly moaning in my sleep. They gave me osteitis condensans illii, from the bones of my SI joints rubbing against each other. After years of being in such pain, I diagnosed myself with hypermobility syndrome after seeing a case on Mystery Diagnosis. My primary was doubtful, but agreed to refer me to a rheumatologist. The first time I saw this rheumatologist he dismissed my self-diagnosis, yet when I saw him again 2 years later he told me that was what I had! At that point, I had developed a petechial rash and flares of incapacitating multi-joint pain and he said it was all from hypermobility. Nothing he could do; and he now refuses to see me anymore. 8 painful years and multiple condescending specialists later, and 4 years after losing the ability to work because of these ever-increasing flares, I've now gotten a diagnosis of Lyme Disease. So I've always had a lot of the symptoms you describe, but I've never considered myself to fit the diagnosis of EDS because those people seem to be really tall and skinny. Hmmm.. Now I'm wondering if I should ask to see a geneticist as well. 2 of my 4 kids have difficulty with their joints; my 13 year old's feet are so bendy that he's needed orthotics for the last 2 years and can't walk very far without complaining of foot and leg pain. Plus he has subluxed his SI joint and pelvis twice already! Thanks to this video, I think I should ask about being tested for EDS. Whether I have Lyme or not, I am definitely bendy (my left wrist is subluxed at the moment), and my kids are too, and I owe it to them to find out if they have a potentially incapacitating syndrome that will affect the rest of their lives. Thank you!
You have no idea how your video and heart touched me. I'm in that process of finding out what's wrong with me. Bedridden for months now. Misdiagnosed for fibromyalgia and waiting for my neurologist to tell me results of dysautonomia. Thank you for sharing, it made me cry. Soft hugs.
I have followed you for a long time. I am so glad you FINALLY got some doctors to be on your side, to listen to you and to get a diagnosis. I am so sorry you had to go through such hell. I have had doctors dismiss my chronic illnesses before, told it was in my head. It took 8 years to finally get a diagnosis of IBS, finally last year. It is surreal we, the patient, can be treated so poorly! I hope you will take comfort in that you have people who are rooting for you.
urgh omg this made me cry. ive been meaning to do a 'storytime' on my channel about my disability, and your story just rang so true for me. being in pain with no diagnosis and no one trying to help is so fucking awful. thank you for sharing x
This video was made a long time ago, but thank you so much and I love you. I hope you have so many good days. I am so sorry we keep going through the same things, I don't understand the medical field.
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.
I am 45 years old and am just now finding out this may be a diagnosis for me. It fits myself and my children, my mother. I have an appointment at a Rheumatology center at an educational and research hospital in a little over a month. Wish me luck.
I am struck by how similar my dilapidation has been: Plantar Fasciitis that resists conservative treatment, followed by lower back pain and dysautonomia. This video has helped because I've been getting nowhere in primary care, and I need to advocate for a referral to a specialist.
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.
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!
OMG, what a journey! It seems like you have suffered a lot (not just physically but also emotionally). I'm glad you're diagnosed now and you make this amazing videos to help the disabled community. Apparently you were also "too female" because men didn't listen to you! Paternalism and mansplaining ugh. I'm glad female doctors were much better in your experience. Keep doing your beautiful job giving strength to the community. Btw you also gave me strength to push my therapist so someone can diagnose my possible dyspraxia. I've heavily researched it and it looks like I have it. Love you
Annie this was so badass & fierce!!! I have so much respect
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 UA-cam 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.
I'm clutching my chest! This is the most affirming comment, thank you SO much! All I want is for my voice and my experiences to have this kind of positive impact! I am thrilled that you may be getting an official diagnosis soon! EDS is a real shit of a diagnosis because there's not much to do besides attempt EDS specific physical therapy (which may or may not work), maybe access to pain relief treatments, but most importantly it comes with an affirmed understanding of what is happening in your body and I hope you get it soon
I'm planning to ask to see someone about braces for my ankles which often give out and cause me to fall, my knees which dislocate many times every day, and my wrists. I'm also planning to ask for physical therapy. I'm an elementary school teacher and teach 3rd grade, so I'm hoping for a note for work from my doctor stating that I need to be allowed to wear tennis shoes, to teach sitting down as much as possible, and asking to be allowed to skip any field trips that involve lots of walking. Right now I think these are my biggest concerns. EDS definitely does suck, but I know there are ways that I can adapt how I do things to make them accessible for me. I also just purchased an electric wheelchair and a cane after watching your video on your mobility devices. I've been avoiding using mobility aids for a long time because I kept telling myself "you're too young and you don't need these" and worrying about how others would judge me. I still don't think I'd be comfortable using my chair at work, but the cane will probably help a lot - especially during the dreaded standardized tests. We are supposed to walk around and actively monitor during those tests, and being on my feet for 4 hours just about kills me every time.
Do you know of any resources that talk about accommodations that can be made for people with EDS in the workplace? I've been struggling to find anything that I could share with my boss to give us some ideas.
I don't unfortunately, but I would assume that it is based on the individual's needs and asking for those accommodations; according to ADA they must comply to their best ability or they are eligible for a lawsuit under disability discrimination.
@@theannieelainey I wanted to come back here and let you know I got my clinical diagnosis of EDS from my geneticist yesterday. He isn't sure which type it is (he's thinking its cEDS or mEDS) so we are waiting on the genetics results for that....but he said he is positive I fall somewhere on that spectrum.
Thanks to you and your videos my mom, sister and I all now understand what is going on with our bodies. My mom has been falling apart for 58 years and never understood why and had doctor after doctor tell her it was all in her head...so this is huge for her. I just wanted to come back and say thank you again because we are so greatful for everything that you do to bring awareness to EDS.
Thank you for sharing your story Annie. It's disheartening how doctors, who are supposed to help and support us, can be so awful. :c
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.
And PS I love how articulate you are!! Gurrrrrrl you got one hell of an amazing communication wave that can grasp anyone's attention.
I too didn't start having chronic pain till my 20s. I was 24. Just a few months after being married. In 2013. Then in 2014 i was misdiagnosed with RA and psoriatic arthritis. I went for a 2nd opinion last year and that 2nd rheumatologist said that I have EDS and not any auto immune disease at all. I'm getting a wheelchair myself soon for distances and long days. I already use a cane to be stable and braces for my hips and knees. Hang in there and thank you for sharing your story. :)
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...
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
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.
People always mock "Feelings over facts" but I knew something was wrong with me when I couldn't gain weight and had a hunched back and stretchy skin, it took me into my adulthood for doctors to get me rolling for testing. Doctors spent most of their time not listening.
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.
my first rheumatologist said all my tests were clear, but continued to treat me as if I had jia. nsaids that worsened my symptoms were all that I was prescribed. days of choir spent dizzy from hours of standing. 4+ years of constant pain met with "we'll see what happens", even when I knew I had eds and wasn't showing signs of autoimmune arthritis. it took until after graduation for a nurse practitioner to tell me I had the hypermobile type. now, it waits to be seen if that's even the correct type.
it's an uphill battle, and I hope everyone wins out in the end.
I was very moved by your story and wanted to interview you on my podcast. Thanks!
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.
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.
Thank you for this... I'm about 90% sure I have a form of EDS, but I keep being referred for physiotherapy that doesn't work and to podiatrists to have insoles made to support my feet when walking is painful anyway.
I currently don't use mobility aids, but am having to start saving for a new wheelchair because that's the only thing that's helped me so far.
My hips subluxate at least once a week and are always painful, but what I'm most afraid of is what happens if I don't actually have EDS, what then?
I'm glad you got your answers after watching just a few of your videos over the last few days. I hope I get mine too. All the best, Wendy x
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 :)
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.
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.
Three years, that's sadly very fast. It took me seventeen!
I know this is an old video but this issue is true for so many chronic illnesses.
You...are everything.
I'm sorry you went through that. I really enjoyed your story! You seem like a great person.
... 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!
It took me until the very end of the video to realize you weren’t sitting in front if a window at night
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 :(
Girrrl, I have been THROUGH IT with doctors. I go through periods of time where I avoid them as much as I can cause I'm so FED UP. Other times it is necessary to get any treatment or pain relief. I don't feel like my case is that complicated but doctors don't seem to know what to do with me. Plus I refuse a lot of medications cause they're awful, which they don't appreciate.
I've taken it upon myself to try a wheelchair (renting one for a month) cause I kept losing more mobility and having more pain. After an episode where I couldn't walk at all due to the pain my fiancee said (nicely), it's time.
Did any of my docs suggest this - something that could reduce my suffering? Nope. I feel like a hypochondriac for using it without "permission" but I wasn't going to wait until I was bedridden with pain to ask. -_-
I'm so glad you got a diagnosis and never gave up. It's exhausting to be sick/in pain and have to continually advocate for yourself, but it does get better.
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.
When I didn’t get BETTER-better on my heart meds, my doc shrugged and said she didn’t know why I was still ill. A rheumatologist I went to for pain (referred because there’s a lot of RA in my family) didn’t even bother doing a blood test; he literally glanced at my hands, said, “You don’t have arthritis,” and basically ran me out of his office. I ended up with several PCPs who took what I said seriously but didn’t know how to help.
Finally I asked for a referral to physical therapy because of persistent pain in my right hip. It took less than 5 minutes for my first PT to diagnose me with joint hypermobility; she later said she could pretty much tell as soon as I walked in.
That was the missing piece. I Googled joint hypermobility while sitting in my car in the parking garage after my appointment, and I can’t even begin to describe what it felt like to suddenly realize that THIS was the thing. Within two hours of internet research I KNEW I had EDS.
The funny thing is, I’d looked into EDS before. As I imagine most undiagnosed people do, every time I ran across a disease I’d never heard of I looked it up in the hopes that I’d solve my own mystery. But I made the mistake of simply looking on Wikipedia, where the first thing they show you is an image of very hyperextensible skin. I have only mildly hyperextensible skin - to the point where I hadn’t previously noticed it - so I immediately dismissed it and moved along with my day.
That it took so long for anyone to notice my hypermobility is infuriating. I’d always just been “really flexible” and never realized that it was a symptom. But looking back, there were many, many moments along the way - starting from the time I was 5 years old - that could have made things turn out differently. If they’d taken me a little more seriously, been a little more curious about my odd collection of “weird stuff,” if they’d tried a little more. But instead I spent my whole life being gaslit.
I appreciate the work you’re doing to bring awareness to this issue. The more people know about EDS, the fewer people who will have to go years suffering in the dark about their condition. I’m sorry it took you three years - and yet - immensely glad that it didn’t take longer. 💛
I've been looking for an answer since I was 26 and now I'm 48. I still don't know what I suffer from. Im definitely checking out EDS. This would explain a lot. They diagnosed me with fibromyalgia years ago. Although I knew that wasn't my answer. I feel like I'll never get the right doctors..Ive seen so many over the years.
I also have Ehlers Danlos Syndrome and honestly *nothing* in my diagnosis journey went right until I got a female doctor.
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.
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.
I get it! I am still waiting on a diagnosis!
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.
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".
Thank you for this video!
I don't have EDS, but I identify deeply with the feeling of being dismissed. I have a bad stomach pain that lasts for a couple of days, every month or so. It's not terrible, but it angers me to not know what it is, or what causes it. Doctors would constantly attribute it to anxiety, and it drove me mad.
Your story makes me so mad because it's so unfair, but I'm glad you found the strength to fight it and finally get the diagnosis, to at least let you defend yourself properly from the challenges it makes you face. I hope it gets somewhat easier in the future. Also, try out lettuce tea, it will probably relieve all your symptoms! (lol, jk)
Thank you so much! This gives me hope for an answer ❤️
wow. such a powerful video. thanks for sharing❤❤❤Love ur videos. keep spreading all the good,loving,positive messages....
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.