Living with EDS: My Journey to Diagnosis
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- Опубликовано: 17 апр 2016
- This is just my own personal story of my diagnosis of Ehlers Danlos Syndrome. I hope you find this video helpful. If you have any questions I would love to answer them! What is your story?
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It's heartbreaking to see more and more people getting misdiagnosed and treated as a hypochondriac. :( I have a message for them: listen to your heart and don't give up!!! If you feel like the doctor's are not right, don't let them treat you like this!
Christina, I'm glad you made another video and please continue in the future and let us know more about your story! It's a great way to raise awareness and help people with invisible illnesses.
Tearing up thank you... I am right there at this moment!!! Just being pushed aside ignored and misdiagnosed. I swear it's not Fibro.. 🖖🏼😔💓
I was told that and Chronic Fatigue Immune Dysfunction, decades later they say it is Sjogren's and Hashimoto. I will share that regardless of the cause or diagnosis we must all minimize meds., vaccines, and embrace and prioritize gut health. It has made great improvement for many and even cured some. Prayers to you. Keep organized records and make the system work for you, and get support for the body mind and soul, it is connected, don't let them disconnect you and make you worse.
It’s very difficult to believe in any person calling them self a doctor anymore.
Sure you can walk out if someone’s office, but for some of us it’s very difficult to get to see a new one. Not only do you have insurance problems or find someone taking new patients, with but there’s also typically anything from a 3 week to an 18 month wait to see one, and on top of it, it gets very hard to gather the courage to even talk to another one. When your serious health problems keep being dismissed, it takes a TON of courage to speak to another.
I can’t tell you how many times I fell into a serious deep depression after my doctors appointments... I just have never got answers and been through too many horrific “treatments” that not only made me worse, but financially strapped.
True to that
I hope you went back and showed that diagnosis to your pcp, maybe she needs to go to ethical classes and learn to listen to the patients
Off topic but you have GORGEOUS hair!!! :)
+Better Health Better Life Why thank you! 😊
Yes....soooooooooooo beautiful!!!!!! And happy!!!!
I also have EDS and it sucks and when I see these videos I feel less alone
It sure does! Im glad my videos help you though, it makes such a difference knowing someone else understands how you are feeling.
I suffer as well!!
Riley Bates lppopop
Ditto! *zebra and other rare/invisible diseases/disorders and just GROUP HUG!* feeling alone is the worst, I'm so thankful for the internet and for channels/people like Christina :)
I really hope you reported that physician for her gross negligence and incompetence. Best of luck to you xx
We are working on that very thing right now. We have actually recently heard from another patient of hers that was very sick and written off.
True that, I’m so over these quacks getting to practice medicine. Stop allowing kids to do what an adult SHOULD be doing!
I love that I got to be apart of your diagnosis and story! So happy our paths crossed and you are my best friend and I cannot imagine life without you! You are a unique hybrid of EDS like me! I love you sweet sweet girl!
+Sarah Williams
What does it say about our healthcare system that you figured out the key to your own diagnosis from randomly catching a tv show, after doctors had years to diagnose you. It makes me sad and very angry. I'm so glad you're getting the needed treatments you need now. I hope you don't have that same primary doctor anymore. I would consider reporting her so others don't have to suffer - or maybe just a yelp review that says this doctor is "for healthy people only." I can't even express how much I admire your spirit, attitude, and grace. You're truly inspiring me and you motivate me to be more grateful, more optimistic and positive, and to try and be a better person. Thank you for taking all the time and energy you do to put your story out there. I can see how it is helping a lot of folks in different ways, and that is pretty amazing. Just massive kudos, love, respect and support your way! I have been watching your videos. I cried when your surgery got moved up from 3 weeks to 1.5 weeks. I'm praying for you. I hope the rods give you the support you need to continue to kick ass and leave a footprint.
Aviva Reim it took me over 50 years to get the right and complete diagnosis thanks to those that share like Christina and Chronically Jaquie, they are finding that vaccines, meds, our poor food sources trigger and worsen our GI systems and trigger genetics. Keep sharing and praying.
Thanks so much for sharing Christina! It is so helpful to hear your story and I am sorry it is so difficult. You give hope and perserverance to all of us who are having similar journeys. (and to our caregivers)
Another great video. I had exactly the same reaction to diagnosis after 14 years of not knowing what was happening. Sounds like you have been through really tough times. Sending good vibes!
I was diagnosed with EDS type 3 when I was pregnant with my son. I was misdiagnosed at the age of 13 with Morphins syndrome. when I mentioned it to my ultrasound nurse she automatically wanted me to see a genetic doctor to make sure that my son was okay. after speaking to him explaining everything in my life I had experienced. he said automatically said you have EDS. it was a blessing for me because finally something that explains all that I lived with.
It really does feel so good when you finally get answers. Its like validation for years of suffering. Im sorry you had to wait so long for those answers
Marcel&Emily Huerta it can be tough for those of us with other collagen diseases as we have silar issues but fall short so the docs get annoyed at us that we don't follow thebook sptoms exactly. Prayers to all on their journeys.
This is the video that brought me to your channel Christina. Love your videos!
All I can say is you go girl! You stayed on it till you ended up self diagnosing... its sad that no doctor thought of it before but there is so much strength in your story to figure out what was wrong and seek treatment to have a better life. Very powerful!
Thank you! It feels fantastic to be on the other side of all that
You are just so incredible. Wow. How inspiring. 💗
It came to a head in my 10th grade year as well! Hearing you talk about these things is very validating.
Wow, I can relate soo much to Your story. There was a period in my life when I had some vertigo and dizziness problems among some other things. I visited countless doctors and got zero answers. It lasted for a year and a half and this alone drove me nuts. I can't believe how resilient You are.
I'm so sorry that the doctors shot you down for so long and pushed you around, but I am very glad that you eventually found answers and are now educating so many people on youtube! You are pretty :) thanks for sharing
Hi there! This is the video that brought me to your chanel. I also have EDS and other chronic diseases. You are such an strong and an amazing person!! And you inspire me to keep on fighting, even when I feel like I can't! Many hugs!! ❤ ❤ ❤ / Disa from Northern Sweden
This video was so helpful a couple of years ago when I first discovered you!!!! ❤️
Just wanted to say that your positivity is awesome. I've never heard of this syndrome and I'm glad you're getting the care you need. I hope that your old Primary is able to swallow her pride and maybe apologize to you for everything that happened and vow to learn more about the disease.
Thank you so very much :) Im not holding my breath hahaha
I just recently found out that I may have EDS so I have been watching a lot of videos on youtube to try and find out more information. Your story about growing up with all those issues and constantly being misdiagnosed and thought of as a hypochondriac is pretty much my exact story throughout school, etc. I'm really hoping to get more answers here soon. Thank you for making these videos
I'm researching EDS right now. I have a mutation on my one gene that can cause cEDS (46% of people who have it have a mutation on this gene). I have an immunodeficiency and IBS-C and joint problems, mostly my ankles, knees, hips and fingers, and I have an IRL friend with it. The more I research it the more I get scared that my sister and I have it.
Thank you so much for sharing your story. This honestly has helped me understand my own EDS and symptoms. There has been days where I question myself and try to ignore my EDS which doesn't help. I'm beginning to accept it but it hasn't been easy.
I love that you shared your story! Your an amazing person, you inspire me! I can so relate to so much of this, when the doctors didn't know what was wrong with me they did the exact same things and it was all so frustrating. You are so strong, keep on making these kinds of videos your helping many! :)
+Emily Pierri Thank you so much Emily! YOU inspire ME! Im so sorry you are going through this as well, nobody should ever be told that their physical illness is all in their head!
This is the video that made me love to watch you! I am going through the same things as you and I am 40! I am going to see the geneticist in April in Philadelphia as Hershey doesn’t see Adults anymore. I’m struggling big time and have since I have been little and I have found so many tips from you and strength when I’m down. Thank you for vlogging and I hope you don’t come to Hershey again, but my son comes there a lot some hopefully I’ll get to visit you one day soon! :) ❤️
Wow! You’re hair is so beautiful!
Aw I was so happy for you when you got the answers you were looking for. ^_^
I just found your channel..This all sounds so strangely familiar and I will definitly watch all your videos.. Thank you so much for your bravery to share your own experiences and educating people all over the world..
Best wishes.
Could you do a video about the genetics test please? Thank you
I am an EDS case as well. It’s so interesting to listen to your diagnosis story because a lot of it I suffered from as well. I did not have a brain malformation like you (well not that I am aware of) nor was I always sick; however, a lot of your story is similar to mine. I was also lucky enough to know about EDS way before my diagnosis because my great grandpa suffered to extremes with it so my family was aware of it. I would love to talk more with you about it I find it so interesting our stories are similar in that aspect. Yours has just progressed a lot fast then mine!
This was really interesting to watch, I'm still in the part with no answers and since I've had issues for so long my mom is also giving up hope and doesn't see any merit in googling and researching what's going on, things are getting worse for me now, hoping I can get some answers soon! Your videos have been really helpful for me (: Hope you're doing okay
Great job! Thanks for doing your videos.
Thank you so much! You are so very welcome
Girl! I went through two years of long surgeries and almost dying to get a diagnosis a Sarcoidosis. It was horrible. The people at the hospital always treated me like a drug addict asking for meds when I was really in severe pain. I’ve learned since then, but it pays to be the squeaky wheel And just keep bothering them until they help me. I had a few doctors give up and tell me to enjoy the time I had left. Until I found the right doctor that makes all the difference in the world. My new doctor even came to the hospital and sat with my mom while I was in surgery.
This is the video that brought me to your channel after searching youtube for EDS info. Thanks for the giveaway opportunity!
My God you've been through so much. Found your video via CysticFibrosisFighter's channel. I really wish the best for you, take care.
I hope that you were able to take the correct diagnoses to your primary care doctor and educate her. I'm glad that finally did get proper help!
+Lee Lu Unfortunately she was still pretty dismissive. She dared to say "Well how was I supposed to figure that out, its so rare!" Umm excuse me but I figured it out and I was just a 17 year old girl hahaha We are going to send a very stern letter to the practice along with some information on the condition, but we are waiting a few months until my sister is 18 and out of the practice.
WOW!! You're so strong!! I read a few comments below and I see that you've changed your GP, I can't believe a "doctor" would say such horrible things to you!!! I kinda hope that you've gone back to tell them they were SOOOO wrong and you were right. It really goes to show that you have to be the one to take your health in your own hands and don't take "no" for an answer. No one knows you better than you.
Yes I absolutely love my new GP. We are planning to put together a strongly worded letter to that practice along with a brochure on EDS that we are designing. I plan to send it all when my sister is no longer at the practice so there is no awkwardness lol ( she's turning18 this year and then can move to adult care).
Christina Doherty after the way the doctor treated you i would be finding your sister a new doctor if she was my daughter.
Beth and Chris She very rarely even sees any doctors there anyway since we mostly see specialists. But shes months away from 18 and can switch to adult care then. It wouldn't make sense to switch now when it would likely take longer to switch to a new pedi than it would to just wait until she can come see my doctor.
Love you and love your videos. You are very smart.
God bless you sweetheart! I understand the horrible lost and hopeless feeling of healthcare providers not believing you and trying to push psych meds on you. When they treat you like a hypochondriac and such. I'm so sorry you have gone through all of this. I'm actually diagnosed with EDS after figuring it out myself. I am a 46 year old mom, wife, and I was a labor and delivery RN but EDS took my career that I loved. I know that I have many of the secondary problems, but my primary physician WILL NOT LISTEN. He mk me feel like it's all in my head. I don't know what I'd do or he I'd be without my faith in Jesus, my medical background and Google! Being an adult with medical knowledge and I still can't get the help I need. You should feel quite accomplished and you've done a great service with your vlogging. Thank you and again, God bless you,
amy
That’s reAlly pathetic of those doctors, and many many other doctors around the world, who are unable to make the connections that you, someone without a medical degree of any sort (I guess, idk) were able to make.
Aside from that, I’m late on this train but look forward to binging through your videos! Thanks for being open and sharing your experiences with us, as a medical professional myself it’s always super helpful and interesting to watch firsthand videos of diseases and disorders like these
I agree with the other comments that you have amazing hair. I am sorry that you had to go through all of that and that your primary care doctor didn't believe you. I had something similar happen to me when I had a major reaction to the tDap vaccine that lasted for about 3 years and a half. I was in extreme pain and had a lot of weakness and vertigo but nobody believed me. I was also put on antidepressants which made things worse. It took years for everything to resolve. Luckily it did resolve for me. But recently I came upon information through an old sorority friend that leads me to believe that I had/have Guillain-Barré syndrome. Thanks so much for telling your story. I don't feel so alone in having something...and not feeling like I was being heard.
Wow Im really sorry that happened to you. The only thing worse than being sick is being sick and have nobody believe you. Im so very glad to hear that you are doing better these days, that sounds like a long hard fight.
Thank you. It was but I was lucky that it was something that eventually resolves itself almost completely. It could have been MUCH worse. I have really been enjoying your videos.
Glad for you and hopefully others will be cautious about how they interact with the medical community and prep their bodies before and after meds, surgeries and vaccines, they all insult the body and most especially our GI system which is the root of our existence, it affects us deeply, so lifestyle is a must for all of us. Thanks for sharing.
Thank you, Christina for sharing your story! From one zebra to another, it means a lot to me!!
Your video was very informative. I am positive that this is what I have and I am patiently waiting to get in so that I can get an official diagnosis. Like you mentioned, there are so many different problems that come with EDS so it is hard to find out which type people have at times.
I was just diagnosed with EDS 3, CCI, and Spine issues, and allergies, my.diagnosis gave me the same answers like u have. and it took 33 yrs for them to diagnose me... Thanks for sharing
learning so much from you.✌❤
Listening to your story, and the amount of frustration you had to go through to get a diagnosis blows my mind. I can't fathom how a doctor can see someone clearly suffering, and be so dismissive. I struggled to get my fibromyalgia diagnosis (I apparently had "the flu" according to several doctors, because a flu that causes debilitating pain and lasts for more than a year sounds legit), and it doesn't hold a candle to what you deal with every day. One of the tragedies is how common it is to hear how hard so many spoonies have had to fight to be heard and believed.
Oh hun. I am so proud of you. I, too, have EDS. So, I understand. I am even now having issues with doctors. Still. I had issues passing out since I was 5, but it was passed of as a typical kid being dehydrated from not drinking. I, too, got worse in the 8th grade, and even now, at over 40, have issues with doctors claiming they know what they are doing, but they DON'T. I only got diagnosed because they diagnosed my 14 yr old. I am still fighting doctors. I have to go 3 hours away for docs as well. You are strong. You are brave. Keep learning, teaching others, and standing up to the common doctors that don't want to learn more. Find new ones when you are mocked, or not taken seriously. You are a blessing to so many of us. Keep getting the word out.
+Ann Foofykins Thank you so much! Im so very sorry that your condition was overlooked for so long. Its amazing how often I hear of adults only being diagnosed after their children are. I guess that says we are moving in the right direction with diagnosis, but it breaks my heart to think of all the people who fell through the cracks for so many years 💜
Christina, I got my EDS diagnosis yesterday from a new Dr, after my Dr at the time made fun of me, too. Your videos have been invaluable.... Yours was the 3rd video on EDS I found, and the one that convinced me I had it. In a Vista brace, a lot of my (still undiagnosed) craniocervical issues are improved. But I have the MRI referral, which was no small victory. It's sad that vlogging your medical issues does more to help us educate providers than the providers educating themselves.
Seeing your videos and hearing you talk about EDS is very inspiring, and actually helpful. I'm currently awaiting the results of genetic testing to see if I too have EDS (ugh why do the results take a month) and seeing how well you are able to handle all of this and deal with it has me a lot less nervous if I do get a positive result. I get the results next week. Either way I've subscribed so I can follow your story. Thank you for sharing it.
+Rebecca Salen Best of luck! Even if this isn't THE answer then it will still be AN answer
Sending You lots of love from Germany ❤❤
This sounds exactly like me. I do not have your diagnosis though. I have been diagnosed with Rheumatoid Arthritis and Ankylosing Spondylitis. But the dizziness and balance/ migraine issues have been reoccurring. They told me it's migraines 🙄
Though we have diff diagnoses, I can empathize with you. I wish you more good days than bad and hope you can continue your inspiring journey.
Why for the love of God do doctors always jump to "anxiety" being the cause of health issues in young women. Thank you for sharing your story because you help others see they aren't alone. I am so glad that you were persistent in seeking out help for yourself.
I am new to knowing about EDS but have many other health issues that are seen with it so am getting a work up for EDS which my GI doctor requested. I have a chiari 1 malformation that was diagnosed when I was 15, I have gastroparesis which was diagnosed in November of this last year, I have had joint dislocations, dental, vision and skin problems. For 30 years I was called a hypochondriac and accused of "faking" my issues. I even at one point was told I had conversion disorder and had suppressed anger and that therapy would cure me.
Finally in 2016 I got linked up with some amazing doctors who began to unravel my issues and now I am finally closing in on EDS being my diagnosis. It is such a relief to know the WHY behind my daily struggles.
I encourage anyone who struggles with their health to never stop searching for answers. Sadly I have seen time and time again that many doctors don't want to dig for a diagnosis and would rather write their patients off as having psychiatric issues.
If you do not feel well find a doctor that will listen. You are NOT crazy and you and only you know your body and how you feel. It can be frustrating and scary but keep your head up and keep searching.
Christina I wish there was a way to get your story out there on even a larger scale for more people to hear. EDS and other chronic health issues are so underdiagnosed and there are people in this world who suffer daily and think they are alone. Hopefully your message will reach those who need it.
I love your hair and I feel so bad for you having to go through that
+Samantha Guillen Aww well thanks about the hair! Unfortunately my story isn’t unique. So many people have the same one or worse. Im just hoping that the more we share them the more awareness can be raised and it will help the future generations
It was really painful to hear about how awful your primary care physician was. I can't believe you ended up diagnosing yourself! I would have lost all hope in medical professionals at that point. You are super strong, girl!
I can honestly say that it changed the way look at medicine and doctors. I have had numerous experiences where I was blown off and ended up having a very serious problem. It makes it really hard to trust anyone to be honest. People just don't know enough about these conditions, and when they don't know, instead of just admitting that, they feel like they just have to make up an answer.
This is the video that brought me to your channel and I've loved watching ever since(for the giveaway)
Just got my official diagnosis today! Bittersweet.
For example, Chlordane, a Pesticide termiticide manf by Genovique Specialties/Kodack is well documented to cause Mast Cell Activation, it was commonly used to treat under homes. Mold and Trichothecene have also been implicated.
Spot on with EVERYTHING you said. I laughed at how your doctor said " you don't have that that's the circus people disease" because that was EXACTLY what my doctor said.
"The circus peoples disease.." that's a new one. I also found one of my Dx from Mystery Diagnosis!
+Savannah Bailey Thank goodness for TV and my morbid medical interests! Am I right? 💜
Thanks, you just repeated my daughter's life story. I cried because the suffering of EDS is real.
I’m 24 and I’ve been fighting for this for years. As a younger teenager my feet would just turn over/come out from under me and I had tons of sprains, strains, and minor breaks. Then between 17-19 I developed general joint pain which spiraled into more sprains ans strains and major joint issues including my hips, back, and knees being so painful I couldn’t move them. I went a rheumatologist and she did a battery of tests (19 vials of blood) and they all came back fine so she told me it was stress or growing pains or maybe fibromyalgia (but she stressed the first two) and never wanted to see me again. I ended up moving across the country for college and most PCPs blew it off too, despite my pain, strains, and partial to full dislocations getting worse. It wasn’t until I started dating someone in medical school that anyone listened to me. My girlfriend could see me in pain, see my joints when they randomly dislocated, etc. And then she and her med school friends talked and they remembered learning about EDS and similar disorders in an osteopathy class and they were amazed because it all fit so well. The problem is I’m moving in a month for grad school so taking this to a doctor right now won’t do me much because I’ll have to find a new one in a month. However after having so many doctors not listen, I’ve realized I need to ask to show them before they talk. I can twist my hand 360 degrees while keeping it flat on a table, and a million other weird “party tricks” that will hopefully shock them into listening. I don’t care if the final result isn’t EDS type 3. I just want to see a doctor (not just med students) that believes me and can help me.
I'm still trying to get a diagnosis. I'm 49 and no longer present as hypermobile, which is pretty common. I was diagnosed as hypermobile at 17. I have had a whole host of issues. I saw the top specialist who was belligerent toward me and said I present like his patients but don't meet the hypermobility criteria which is bs because many have gotten a diagnosis without the criteria. I have to try and keep fighting for answers. My gp is now thinking its Lyme since she went to a conference where they said Lyme can present like eds. I think it's eds since it all started at birth. Wish me luck. I send you strength and courage to keep dealing with all this. Thanks for speaking out! Ps feel free to check out my channel. I share about health-related issues as well.
Sounds like you need to find a new doctor. I know that a lot of various conditions can have similar presentations, but if you have documentation of hyper mobility (at one time) and a history from birth, it doesn't really sound like lyme (although its always good to explore all avenues just in case). I think you need a second opinion. If you truly don't fit the EDS criteria it could still be some other form of connective tissue disorder. It can be so confusing, every doctor seems to have a slightly different criteria. Best of luck! Keep me updated. I will definitely check out your channel
I've been looking for another geneticist. I'm going to an EDS meetup on Saturday to see if they can recommend anyone. Unfortunately I don't have documentation of the hypermobility since it was 30 years ago and I don't even know the doctor's name. What other types of connective tissue disorders are there, ie. that you think it could be? Some day I'm going to do a video all about my history and symptoms and see what people think. I'll stay in touch! Thanks for your thoughts and all you're doing to spread awareness, understanding and hope.
Good luck. Maybe print out some papers from reliable sources talking about how hypermobility can definitely decrease with age due to repeated injury and damage to joints. God, so many doctors are ignorant. I had to DX myself :/ Family members have been DX, I found out afterwards! Trust your gut!
MindOfHerOwn you are not alone, I'm 59 and not until3 years ago til I finally got answers that connected all the dots. Prayers to your journey.
Hi Christina, Thanks for this video. I am currently going through diagnosis but I officially have scoliosis, hypermobility syndrome and cervical instability. I also have the allergy issues and autonomic issues. I decided to research and found hypermobility syndrome and EDS hypermobility type is being recognised as the same illness. I also found that the allergy issues are something called 'mass cell activation syndrome'. The vagus nerve seems to be faulty and not doing its job properly. I've now got my referral to a specialist for EDS/Hyperbolity type. I have recently realised that every 2 weeks I get worse and it's around time of menstruation or ovulation and that the symptoms have been worse since I got the mirena coil and the progesterone only contraceptive pill. I have found evidence on an EDS website that they believe it could possibly be causing or escalating the EDS in many patients. I just wanted to put that out there for you or anyone who may be taking hormones or have natural hormone issues that are making things worse and don't realise it x
Hi thank you so much for commenting. It sounds like you are on the right road toward a diagnosis! MCAS is really difficult, i'm sorry you are dealing with that too. It is one of my biggest issues right now as well. As for hormones it seems like we all react a little bit differently. I do have hormonal issues and have found that taking hormonal pills actually helped a great deal with my joint laxity. My doctor explained that the body releases something called relaxin at certain points in your cycle and that causes the ligaments to further relax. By adding continuous hormones they can try to prevent or lessen that release. Obviously though we are all so very different and it often comes down to trial and error.
Just turned 29, was diagnosed with juvenile rheumatoid arthritis at 12, just found out after 17 years I had a mis diagnosis, three rounds of chimo for no reason, in and out of hospital for almost two decades, I hurt but no one understands, about a year ago I went to europe to see a diagnosis that was not in Canada, I have t3 eds, just learning about all this stuff, could write about it forever, but instead, your fucking Awsome, a trooper for sure, rock on. Hold fast, stay strong 💪
+Justin Grenda Yikes! I can't imagine going through all those years of treatment for the wrong thing. So sorry that happened to you! Glad you are getting answers finally ❤
Feeling down and a bit hopeless. Blood tests are out to see if I have classical type, already been diagnosed with eds. Pain management saw me for the first time today, brushed over eds all together and suggested more ani-anxiety meds, New pain pills, ti chi and yoga....... I made it to the bus stop before I cried thinking about my appointment and the long trying trip home.
My primary care, who is a nurse practitioner, doesn't think we should run any tests and believes I should go back to work to help my fibromyalgia. My pain management specialist didn't know much or anything about eds, thinks I should be more active, go back to work, and do yoga for my fibromyalgia. Fibromyalgia was a misdiagnosis from two years ago but they won't take it off my files and only focus on it. The doctor who gave me that diagnosis did no testing to rulers out anything other then fibromyalgia took my notes, left the room, and came back with a prescription and diagnosis.
My boyfriend of nearly eight years, extended family, and physical therapist all seem to know more about elhers danlos, and are more supportive, but unable to help much without more testing and information from the specialists with the power to do that testing.
I am about to always bring someone with me to my appointments, record them, and send a stack of peer reviewed medical reports and refrances before I go to anyone looking for help.
I so often feel like I have taken up half of my day and money I don't really have to spend tiring myself out to get to the appointment, only to be dismissed as if I am fat and lazy, stupid, crazy, lying, or drug seeking when no one seems to be interested in anything more then skin deep or even talk with me for more then five minutes. My symptoms are getting worse inside and out as it is. I am busy from 7:30am to 11pm-12am everyday just keeping myself afloat and to add insult to injury I can't even feel proud of myself for not being a miserable mess because the people who are paid to help me would rather be too lazy to do research, and think too poorly of me to listen to my concerns, as they are valid and well researched on my part.
I am so sorry. There is such a lack of education out there, especially among doctors. So few seem to understand what a crippling and systemic condition EDS is, and surprisingly they don't seem to understand that it causes such widespread pain. So many people end up misdiagnosed, many with fibromyalgia. Don't lose hope, there are some doctors out there know understand. You just have to find them. May I ask where you are located?
thank you for sharing
Thank you so much for sharing your story! I'm just discovering that hEDS is likely what I have. I'm dreading the diagnostic process because my family doctor sucks. But I'm in so much pain, I don't know what else to do. I'm currently trying diet changes. Have you done any diet changes that have helped
I also was pretty normal in my youth, no injuries or pain except for asthma which also goes away after growing up. With 16 I get a panic attack after trying cannabis and then weird symptoms aperead inculding chronic pain in my gut. Im also a bit hypermobile in my arms but it didnt hurt or anything. Let's hope I dont have it or at least in a mild form.
your story is so similar to mine! I'm currently being investigated for EDS!
+MeKakapoPerson 💜 So sorry you have walked a similar path. Im glad though that it sounds like you are close to some answers. Best of luck! 💕
ok thinking since im older now with eds I should probably start my own blog and talk about how it is.. and see if I can make some friends in so alone
After showing my mom this video, she has done a ton of research and she truely believes that this what I have. It would explain so much of the things that have happended to me throughout the years. Alittle back story of me is; in third grade I was diagnosed with Celiac Disease. Also, in third grade is the start of when i would brake bones easily and they would take abnormally long to heal and the same goes for spraining, etc. I have had severe joint pains in the past in my knees and ankles to the point that i couldnt walk. So now present time, It has been 30 days of non-stop severe: head pain, dizziness, and bad weakness so I can not walk by myself. My neurologist andprimary are also saying that this is just my anxiety and giving me medicine to try. I believe that something is truely wrong and I'm not making this up! I am really hoping for a possible diagnosis to hopefully help me out.
+Emma Irene Wow, Im glad to have maybe helped you on your search for answers. It sounds like you should see a geneticist for these symptoms. It could definitely be something like EDS or another connective tissue disorder. Have you ever heard of osteogenesis imperfecta? It is a disorder of the collagen (just like EDS) that causes loose joints and muscles but also causes very brittle bones and frequent fractures. Some EDS patients have frequent fracturing as well though. That is why it is very important that you have a geneticist to help you sort everything out ❤
Christina Doherty Ok I will look into that. Thank you!
Hi Christina! You are beautiful and such a strong young woman. I also have EDS. What type do you have?
I diagnosed myself with Type 1 Diabetes. Literally everyone thought that I was being dramatic and that nothing was wrong with me. When I started bringing up diabetes they were like, no, you definitely don't have that (even though I had pretty much all the symptoms). The only people who believed me were my friend who is now my roommate and my friend who I had skyped to decide if I should go to the hospital or not. I didn't tell anyone that I was going to urgent care except my friend who had helped decide to go and my roommate at the time because I didn't want to be further discouraged. When I saw my nurse practitioner, she asked me what was going on and I straight up told her, "I think I have Diabetes." Obviously I was right and I was transferred to the hospital and was there for four days. Just goes to show that it can be a much simpler diagnose and you still get the people who think nothing's wrong with you. Obviously my nurse practitioner knew right away based on my symptoms but the reason it took me so long to go into urgent care was people kept telling me that I was fine when I clearly wasn't. I finally decided to do something about it when a guy in one of my classes that I didn't know very well came up to me before class and told me that I didn't look so good and I was just like, this guy I barely know can tell that something's wrong with me but my parents, boyfriend at the time, and friends can't. It was very frustrating.
+Alaina Ruby Wow, what a story! Im so glad you advocated for yourself and didn't give up on finding answers. We really do know our own bodies best. I hope you are managing well now that you know what is going on ❤
Thanks for sharing
Omg she looks so different!
I have EDS and I am 12. I've subluxated my shoulders toes thumbs and knees. I don't have any tubes though.
Hey Jennie, sorry it has taken me so long to reply! I hope you are well! Im sorry you have had so many subluxations, its not fun. Hooray for no tubes! I hope it stays that way :)
Hello my name is Monica, you have really encouraged me by the way you have dealt with your condition. You see l have a condition known as Neurofibromatosis type 1 it leaves me disfigured and l have a hard time dealing with it son
+Monica Patterson Im glad I could offer you some encouragement. Im sorry you are dealing with NF, from what I understand that can be a very devastating condition. Living with a chronic illness is really hard. I am so glad at least we have this online community where we can come together and feel less alone in our struggles. All the best to you! 💕
I had to pause this video to comment
GIRL I'm having the same problem, or more specifically I've been struggling with this for at least a year or two now where I seriously just can not eat anything without getting incredibly sick/nauseous/vomiting and NOBODY wants to take me seriously. Doctors do the same thing to me, they brush it off like it is nothing and try to say I just have IBS and my stomach issues are just from anxiety AND IT IS SO FRUSTRATING so I definitely understand you with that
+Miranda Marie I am so saddened to hear this. Im so sorry nobody is taking you seriously ❤ Have you had a gastric emptying study to check for gastroparesis?
Miranda Marie both of you are on my prayer list I have epilepsy and asthma
I have EDS as well. was diagnosed when I was 7.
+Elise Weaver Welcome, nice to " meet" you! Thanks for watching :)
I spent 12 yeads from the onset of symptoms until I was able to get diagnosed. I even had a geneticist who, no joke, pushed my pinky back a little then said, "Oh yeah. See i have flexible fingers too, but they don't hurt me. So you're fine." And then proceeded to try to get my mom to do genetic testing on herself for something unrelated. I finally have a diagnosis for EDS. Still working on getting a diagnosis for my dizziness (which im very positive is POTS) But my pcp insists its anxiety because nothing showed on my ekg they tpok while i was lying down unmoving.
like me... you diagnosed yourself through your own research.I can't believe some doctors are so ignorant about EDS. Thank God the geneticist I saw was a little more knowledge about EDS and I finally got answers as to why I've always had dislocations and digestive issues and so many other issues...including POTS and an echo confirmed mitral valve prolapse...along with many other prolapses... sigh. it's not easy and most days I'm so nauseated and exhausted. I totally understand you. I think I also have gastroparesis too ...along ways feels like rocks in my stomach. You're not alone dear.
+Cris J Im sorry you have to go through all this as well! Its isn't easy. Im glad you at least have a good geneticist. So many of us lived without answers for so long; many much longer than I did. Im hoping for a change for the next generation of zebras. Thank you for sharing your story and friendship.
Oh dear, I didn't get diagnosed till 3 years ago and I will be turning 41 in November. Like you, I have been suffering from so many different things since a little girl... I totally understand almost everything you have gone through. it's not easy at all and as you get older it gets harder. Many surgeries...but I feel worse and worse and weaker . I pray for all of us going through this. Stay strong, dear.
And it's so hard when for so long no doctor believes you... :(
"It's good for tests to come back normal, but we still had no answers." I'm living through that right now. We're headed to an neuro ophthalmologist for papilledema, and then a rheumatologist.
I have all of these health problems my whole life.How do you get a doctor to listen and get help getting diagnosed?
❤still applies
Christina do you know where they have pMRI availability in Canada?
Were you brought up drinking fluoridated tap water? It inhibits a lot of chemistry in the body. I was, and after h1n1 influenza, I was temporarily paralysed, had migraines, then the pain stopped and my dopamine went too high- I had a mini psychosis. Then I was in hospital, given two types of antipsychotic that regulate dopamine primarily. I started going vegetated so I tried to withdraw from them. Then another hospital put me on "quetiapine" which regulates histamine primarily. I took that for 3 years, now 5 years after quitting I noticed that my vitamin D synthesis from sunlight had to re-regulate histamine to clear blockages of mast cells (mast cells on mammary glands). I had to figure out how histamine was affecting me overall, especially after two years of fatigue after quitting the quetiapine, I started choking and have heart problems. It seems to have disappeared from the Internet, that I can find, but, histamine apparently has a deep infinity with your oesophagus and heart, and I would infer that seeing there are more histamine receptors in your heart than anywhere else in the body that is a kind of inflammatory centre that works with your brain through the neurotransmitter histamine. The fact that it behaves like a conduction of energy at muscle tissue led me to learn more about the endocannabinoid system.. So now I detox as much as I can, particularly detoxification of fluoride as it would have stored in my bones for all my life- a person from a fluoridated control will generally have 200 timed more fluoride in their bones than someone from a non-fluoridated country. I could say so much here, but if you want to message me for any science I may be able to help you with, just message me.
Sorry I forgot to say that You are and amazing strong beautiful women, I just can't believe there are physicians that have their pride rule their practice
I have IBS too.
I've been diagnosed with fibromyalgia but frankly, I don't buy it. Especially not anymore. I can't write with my right hand, the right side of my neck is completely messed up- horrible migraine headaches, I constantly feel nauseous, I get vertigo attacks that can last up to 2 hours. My right ear feels weird, like there's too much fluid there.. Yeah always my right side. I can't stand bright lights at all, my colds and flus are unbearable (high fever and vomiting), I can't sleep or I sleep too much, soo many food allergies, my mood changes constantly.. panic attacks every single day, acid reflux... my heart skips beats 4000 times a day, sometimes I feel like I can't breathe properly.. I'm always exhausted.
Wow it sounds like you have a ton going on! I am so very sorry. You have every right to question your diagnosis, and it seems like you have some reasons to. Do you have/have you had the opportunity to see a geneticist? It sounds like in your case you may want to try rule out some serious genetic disorders, EDS included. I sincerely hope you can get some answers and peace of mind!
+Christina Doherty (Watercolormeimpressed) here in Finland it's almost impossible to get diagnosed with eds.. the doctors aren't informed. You have to have stretchy skin, to be extremely flexible.. otherwise it's just fibromyalgia and/or CFS. They basically think EDS is a very very rare condition.. then how come I have more in common with eds patients than with fibromyalgia patients? Most people with fibromyalgia have "flare ups" and "better days", drugs like Lyrica and Cymbalta help. Also people with fibromyalgia feel slightly better after exercising (usually).. I don't. Thanks for responding. 😘
The symptoms can definitely start to appear or come on suddenly later in life, but there are almost always early signs as it is a genetic condition that is present from birth. For instance I was 10 or 11 years old before we started to notice that there was something different about me and 16 before my symptoms were severe enough to warrant diagnosis. Some people don't even show symptoms until childbirth or beyond.
HeidiTheChubbyBunny so wired I have the fluid in my left ear I’ve never heard anyone else with that symptom, I assumed I was my allergies I never considered my hEDS to be the cause
i've got eds and a very agressive form of arthritis and went YEARS with multiple different doctors telling me it was growing pains. by the time i got my diagnosis for arthritis at 14, several of my joints were already severly damaged. as they were treating that with cortison-injections and stuff like that, the pain didn't go away. i swear i made my doctor go bald because he couldn't figure out why i wasn't getting better and also why i, a person with arthritis (which makes you stiff), was so hypermobile. at 16 or 17 i got my eds diagnosis and the pusslepieces started to fall into place. nowadays i jokingly say that im a very mobile rheumatic and a very stiff eds:er.
"Growing pains" is such a nonsense diagnosis. I can remember thinking "I better end up being 6 feet tall after all of this." hahaha I can imagine with the EDS and arthritis diagnosis was very complicated. Although a lot of us seem to have/end up with arthritis in at least some of our joints (obviously your case is on a whole other level though). Its funny because everyone seems to think "Oh EDS, super loose joints." But between arthritis and muscles spasms a lot of us are pretty stiff.
as i can imagine with your multiple diagnoses, everything overlaps and works together to destroy your body. but nowadays i'm actually able to tell the difference between eds-pain and arthritis-pain, which is quite helpful as to know where to inject cortison/have braces and such.
I imagine its such a balancing act when it comes to the injections since cortisone injections weaken connective tissue
it has really been trial and error when it comes to those. our bodies hates us haha!
You’re born with EDS, it doesn’t develop from other diseases; it’s genetic.
Do you have a pounding sound in your ears? I was just diagnosed with hEDS and also looking at POTS and I get this pounding in my ears that I can't stand. I think it is related to POTS, but no one will give me an answer.
Go figure about the docs thinking it's anxiety! I was just diagnosed at 42 after a life time full of no answers.
Christina what type of EDS do you have?
I recently studied EDS in med school and then I discovered your videos. I know we can sometimes forget about some rare genetic diseases but it is not right what your general doctor did when she did not take seriously your opinions and I hope to be a respectful knowledgeable physician. Love your videos BTW
+Angelica Haro (ACOH) I am so glad to hear that they are teaching EDS more in med schools. So many doctors and doctor friends said they remember reading maybe a paragraph on it in med school. It really is so much more common than people think. Thank you in advance for being a physician who is willing to listen and learn ❤
Thank you so much for this comment. I have EDS and POTS, and we patients all need more doctors like you, especially in the Dallas Tx. area. Many people travel long distances for treatment or even just a little tiny appointment, which they may have waited for, for over a year. Even if you just know a little bit about EDS, you will help us so much more than the doctors who haven't even heard of it.
I thought you were Lauren in the thumbnail, Christina!!
this sounds so much like what im going through, but whenever i bring it up to my GP she always ignores me and says it's just because of my anxiety. i know its not.
Can you ask for a referral to a geneticist? You can phrase it in such a way that she may listen. Maybe something like " I just want to make sure that we cover all of our bases. I feel like I can't make any progress with my anxiety management because I believe that there is also something else going on."
Christina Doherty thank you so much for the reply! I'll definitley say that next time i see her, im just so tired of her blowing me off!
I have EDS as well, they are almost positive that it is type 3 but I'm going to a geneticist in a few months 😊
+Mackenzie Tillison Best of luck at your appointment! 😘
Hi I have joint hypermobility syndrome it causes me a lot of pain on my right hand on the phone to the rest it really hurts and pops and my ankles hurt they can make my knees giveaway so I have to wear Pedro boots I get pain in my shoulder on the right side it pops to so I have to wear a wrist support on my hand and it helps with the pain I had pain brokers put it in my shoulders to help with the bed it has worked I just get popping when I’m in so much pain it pops and sometimes it is sometimes it doesn’t
this is kind of what I'm going through right now
"That's the circus people disease." Hahaha I just did a spit take! Oh, my gosh- these doctors! I have enough material from my experiences to do a one-woman show.
+Amanda Barrie lol right?! I would totally come watch that 😂
Omg you seem so sweet
Our stories are so similar its scary!
+Noel Bivens Its amazing how many people I have talked to and thought the exact same thing. Its sad that so many of us have to go through all this before getting the proper diagnosis. Hope you are well! :)
thanks so much, I really enjoy your videos! :)
❤️❤️❤️
+Lauren Doherty