Hypermobile Ehlers Danlos Syndrome:My Story
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- Опубліковано 7 чер 2024
- Hypermobile Ehlers danlos Syndrome, my story. This is the history of how I went undiagnosed for most of my life and then finally received my diagnosis of connective tissue disorder hEDS in my 40's and how I've been making my life better since then.
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A little bit about me:
Hi I'm Purple Ella and my family is an autism family with three out of five of us on the autistic spectrum. I also have a connective tissue disorder (hypermobile Ehlers-danlos syndrome). So life can be a challenge but also a lot of fun.
Helpful links
The National Autistic Society - autism.org.uk
Hypermobility Syndromes Association - hypermobility.org
![ПОЛНАЯ ИСТОРИЯ ЭКЗОРЦИЗМА [Топ Сикрет]](http://i.ytimg.com/vi/qBySr6Bt0B8/mqdefault.jpg)
I like you sharing that part about not knowing what’s normal when you’re a kid, exactly how I feel.
Hello 🥰 just popping on to say hi and let you know that I set up my UA-cam channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
Yes I got...growing pains...im lazy...im nervous...im a woman...i did too much...just an injury...being a mom...getting old...and being overwhelmed with chronic conditions we find it harder to do anything...keep fighting we are chronic illness warriors.
Basically if you're a woman and/or a minority, getting a doctor or psychiatrist to take you seriously, at best, annoying, at worst, dangerous.
Sad, but true. I've found it beneficial to bring someone with me to doctor appointments.
I wouldn't assume that if you aren't a woman or a minority things are so much better. Life with EDS is just rough and not enough medical professionals take it seriously.
@@SlickClicks It’s not an assumption, it’s a medical fact. Do your research
@@ebonypatterson6714 Not only have I done my research I have seen it with my own eyes.
Seen my dad go to his grave without a diagnosis but with absurd explanations instead
@@SlickClicks Look I’m sorry that happens but the facts of the more rod everyone generally has a hard time getting an EDS diagnosis, but if you are an ethnic minority, female and/or lgbtq you are statistically EVEN MORE f*cked than the general population. Women die all the time because it takes longer for them to be diagnosed with the same condition as a man or to receive treatment or to just generally be believed and not treated like a piece of meat eg in labour
I think some of us have a hard time expressing what is physically bothering us .
@Luke Hinds Signing channel i can completely empathize. it sucks, im sorry
Especially when you've only got five minutes to spend with the doctor.
I am hypermobile, which I only knew at age 25 because a chiropractor randomly told me that this was the cause of my chronic pain. It explained the physical problems I've had my whole live and was such a relief. But I don't have an official diagnosis cause the doctors I've seen act like if hypermobility is not a big deal?!🤔 When I mention it they act so light about it, I don't understand because it's huge... it changes my whole lifestyle. Your video reminded me that I should try again to look for a doctor well educated on this so I can get the support I need and deserve.
Just got this Diagnose today..He found it randomly aswell. One doc after another what a reliefe..
My chiropractor thinks I have EDS and I completely agree! I am 47 and had my first symptom of stomach pain at 7 years old. I have had a lifetime of pain and problems and I am now barely able to function from all my issues, but can't get a diagnosis here in the USA. My doctor has never heard of EDS and when I called the rheumatologist I was told that rheumatologists no longer diagnose or treat EDS patients and neither do geneticists because, and I quote, "EDS is weird and there are no treatments". I was told to see my G.P. you know, the one that has never heard of it. I cried so hard because I feel completely helpless.
Ask to see a Rheumatologist
Hey hopefully you found a diagnosis by now, but if not go to a geneticist if possible who specializes in elders dances and connective tissue disorders, if you're by any Mayo Clinic or Flgo to doctor dare knight who was able to help me with the process.
@@heatherwebber9747 yes! I had my first rheumatologist after years of trying to get a diagnosis and she was the first to actually believe my symptoms lol. Diagnosed with Heds the 2nd appointment 😭🙏
Recently diagnosed with EDS. And yes, a lifetime of pain and gut issues. It's not easy. x
Hello 🥰 just popping on to say hi and let you know that I set up my UA-cam channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
Found anything that helps
Overwhelming to hear a story where I can relate so much and see how actually hard my way is... I'm glad you had a diagnosis. Sending support for that hard everyday life !! We're not alone !
Oh, how I relate to all of this! The loooooong journey to my EDS diagnosis after being thought of as a hypochondriac...i also suffer from anxiety, so, yeah, must all be down to that then! 🤨 Got the ME and Fibromyalgia diagnosis too, along with all the delightful gastrointestinal and joint stuff. Finally, though, I found an absolutely wonderful GP who joined the dots and sent me to a Rheumatologist because she was sure I had EDS and she was right. There's a high percentage of Autistic folk who also have EDS/HSD. My two sons, who are also both on the Spectrum, have EDS too. It sucks being on the spectrum sometimes, because i really find it hard to express myself and self advocate. xx
How are you now
I so relate to this Ella, 47 & the pain is unbearable now and I'm reduced to tears every other day with it. It's extremely frustrating just now as my left arm has been keeping me awake, it's so weak and I can barely use it. I was diagnosed with fibromyalgia 7year's ago, but I was extremely bendy, a gymnast, I'm still bendy but my ligaments no longer support me, and I'm constantly falling and injuring myself as a result. I was supposed to see physio for my hyper mobility a few months ago, everything is on hold. But I'm close to burn out with the constant pain, it's like toothache in my joints.
My hypermobile type Ehlers Danlos syndrome was first misdiagnosed as fibromyalgia, too. It delayed my hEDS diagnosis and treatment for a long time. Can you get in to see a pain specialist who can help put together physical therapy to build muscle and to put together a multifaceted pain management plan?
Read up the u tubes EDS society doctor talks. Really mind blowing help.
OMG , your story is my story! Ex gymnast. diagnosed yesterday @ 47. Along with Fibro.
I saw a Rheumatoid Specialist she has put me on a natural supplement called P.E.A. (Palmitoylethanolamide) 600mg a day. It can be purchased on iherb. Its supposed to help with pain. ( please do your research if its suitable for you ) Love and light to you. xx
I’m just chiming in to say hi from another Simi who has hEDS too. One hour at a time 💕
Symptoms from infancy for both a connective tissue disorder and autism.
Parents dismissed, blamed and even ridiculed me for my "sensitivity" and "behaviour".
As an adult I tried to tell doctors but was always written off.
Diagnosed HSD then hEDS now back to HSD (Similarly...can't currently tick family history box mainly) at 39 years, severe SPD at 40 and just had the first part of my autism assessment this week, at 41.
I already literally nearly lost my life due to doctors not listening to me and had to have a massive blood transfusion (which I still haven't recovered from) 18 months ago.
I hope someone helps me soon as my body is shutting down after four decades of neglect.
Thanks for your videos Purple Ella 💜
I experienced this kind of stuff, too. I ended up firing my doctors and hiring new ones who could actually to a decent job.
I recognize half of your story, the other half is what i'm afraid is going to happen... I feel for you and wish you healing... 😘
Hydrotherapy has saved me!. I attend 4x a week. I have Classical EDS. Diagnosed at 32, first symptoms @ about 5 yrs old. Similar story of not knowing what normal was, and just pushing through. I found I couldn't walk one day, leading to diagnosis. Love the video. Keep up the good work. Blessings
How has ur treatment gone over the years? I am going 1-2 times a week. Im only 19 and am trying not to lose hope but im not seeing much progress and am getting worse. Did you have this experience?
Third Avenue in London?
i exist somewhere along the hypermobility spectrum, and in my experience strength training is super helpful. most PT’s in my experience focus on stretching you out with very little effective strength training, so to anyone reading who is “””super flexible””” and experiences joint pain, this is your sign to seek out a PT who specializes in strength and conditioning
Ella ...I'm glad that you mentioned painful fingers from writing! I do remember suffering a lot from that back by 3rd grade, 1963, age 8 .... even after just one paragraph. Not long after ... I realized I could pull the skin away from my elbow SEVERAL inches. Years later, In 2000-2001 I had a couple biopsies of my fingers that used to get painful reddish purple bumps the size of pencil erasers, but I would always feel very sick/run down for 3-6 weeks when those showed up. That Dermatologist said he was sure I had some sort of Connective Tissue disease. Also, everything on me has prolapsed...uterus, bowel, bladder, heart valves. Still cannot get a definitive DX, and now, with severe arthritis....age 65, cannot do the Beighton Scale test...but I could do all those things with no problem 15-20 years ago. I'm the one who started putting 2 + 2 together by googling everything I've gone thru...and then discovered thru You-Tube and Facebook others with the same symptoms. That was just January 2020, but I brought it up to my doctor, and my new Rheumatologist...and they say Fibromyalgia! I live in a smaller city about 3 to 4 hours south of Chicago, and no one seems to know anything about EDS around here....but can't travel to Chicago or St. Louis due to crippling lower spine/pelvis area. Take care!!
@ Bonnie Moerdyk _ Due to quarantine you may be get more doctors from further out states willing to see you virtually online these days. I would suggest you contact John Hopkins Hospital in Baltimore, they are a well established research hospital.
So similar, I'm also mid IL. Dr. Zimmerman @ Carl hospital in Champ.-Urbana is a pediatrician but specialized in EDS. Got my diagnosis there.
@@420luvsounds ... I've seen his name pop up when I looked online for a dr. somewhat near me. My husband works in Savoy, which is just down the road from Carle in Urbaba. I'm sure I'm way too old for a pedeatrician tho(66-lol). I'm so happy for you to get a diagnosis!!
Got diagnosed with Hyper mobility this week and your story is so similar to what I’ve had, from the gastro to the pain in knees, worse in right, shoulder pain, not being properly diagnosed for many years
Thank you for sharing your story to show everyone going through this, they’re not alone
Just got diagnosed at age 22 after suffering extreme fatigue and pelvic organ prolapse has been one roller coaster not to mention the eyes that feel like sands been thrown into them
Wow! This explains so much of what is going on with my son. Thank you so much!!!
Thank you for making this video and love how you stay positive while keeping it real. :)
I'm so glad I found your channel!!
Talking to my rheumatologist today about this, so good timing! 😊
Watching this is like hearing my own story and I appreciate you making it so much 💙
Thank you so much for uploading this, I related so much and you made me feel so normal! I am in the process of trying to get diagnosed with EDS and autism as well as experiencing mental health. So nice to have someone say it exactly how you see it!!!
Thank you so much for your videos! I was recently diagnosed with EDS and children are scheduled for diagnostic appointments and watching your videos feels so familiar. Thank you for sharing your story.
Thank you for speaking on your experience. I can't tell you how much you are speaking into my life. I feel less alone.
Thank you so much for sharing this! I appreciate your candor & the tips you provide. I am researching in hopes of helping my 20 yr old who still does not have a DX but has many many symptoms of EDS.
Enjoyed your enthusiasm and up beat attitude . Keep up the good positive energy!
What a beautiful soul. I got my diagnose today. Reading the comments and i can relate to everything you guys had and still goin through. Let the journey begin..
That was a very interesting video and I wouldn't mind at all hearing more about this and other topics that you wish to cover.
Thank you souch for sharing your story. I saw my gp yesterday and he is testing me for eds and ra. Watching your story was like you were telling mine even down to the stomach migraines as a child. Over the years I have received many diagnoses. IIH, chronic migraine, sij disorder I'm also dyslexic and suspect I may be somewhere on the autistic spectrum. I have had reacuring flare ups with my joints and have seen rheumatologist only for the blood tests to come back negative and to be discharged with no explanation of why my joints hurt so much. This is the first gp to suggest EDS even though I score 8 out of 9 on the hypermobile scale (and that is only because I shattered and dislocated my right elbow in my 20s so have a normal range of motion in that now. I admit as soon as I got home I went down the rabbit home and can not believe I have not been tested fore this in the past because I relate to most of the symptoms so much. Thank you so much for sharing and making me aware that my pain is real and not just in my head
After more than 3 decades just got diagnosed today, thank you for your helpful video
this is the first time ive ever been able to truly relate to a youtuber. i have autism and eds too and sometimes the combination makes it hard for me to express my pain, so being able to see that im not alone in my experience is very comforting. i wish you all the best
I have an assessment for EDS Type 3 on Monday 22nd, thank you for this video!
Thank you so much for sharing your story! I want to give you a hug!
This was great. I’d love to keep hearing more about your life with EDS, looking forward to watching more of your videos.
You’re such a sweetie. Thank you for sharing your story. I have felt the same: I thought everyone felt this way! Also, I have recognized for years that resting “too much” makes the pain and instability so much worse. Just got my diagnosis last month after more than 45 years of symptoms.
You are teaching me a lot about myself. Thank you. Gives me comfort that I’m not alone. I get anxious that I’m going to stop breathing when I sleep because my throat does all these weird cramping/twisting and it’s hard to swallow and is really freaky when you can’t swallow. It’s hard to fall asleep when you feel like...you might not wake up. 😔
Thank you so much for talking about this!!! It's creators like you that have brought EDS and Hypermobility as an issue to my attention in time for me to start seeking help before it's too debilitating, and I can begin intentional mitigation.
I'm very Hyper flexible, always have been. But I've also always been very active, so when covid hit and I couldn't go to the gym even if it's only a couple times a month, my muscles started losing some of their strength that was helping hold everything in place. I started getting pain and stiffness in my hands to the extent of preventing me from opening water bottles and my joints will shift and apply pressure in the wrong spots, causing damage. My joints started sliding out of place and pinching nerves, never a full dislocatio , but I've always been able to sublimated my shoulders.
Thankfully my drs are aware of eds h and are supporting me in seeking a diagnosis and obtaining physical therapy.
You talking about working out for yourself and how it impacts you not too much but not to little and needing to walk is super helpful as I've been floundering in finding the balance for myself and it gives me a solid starting place that I'm not alone in. Just 15 minutes feels so doable for me. I've also been finding other forms of exercise that I enjoy like Dancing, rock climbing and running around a water park, so it's easier for me to maintain the physical activity that I need to.
It was super interesting learning about your journey, thanks for sharing and I look forward to more content in future
I can understand so much. Only last year I have found out that it is not normal to feel pain every day and feel like fainting. I am still searching and googling as my autism greatly prevents me from any useful me-doctor conversation and they just think I am faking and stupid.
On the contrary, I am very glad I have got HSD when I was 17, so I could be careful to my body and it has prevented so many problems.
I have hEDS as well. It's so hard to feel like it's all in your head. I'm sorry it took you so long to get diagnosed. It took me 25 years and I had to very specifically ask them to send me to a geneticist for diagnosis.
I'm 42 and just was told by a clinic doctor (not my GP..who is a pain mgmt doctor!) That I most likely have EDS type 3 (hypermobility)...it ALL makes sense now!!
Thank you so much- I am very late as far as finding these vids, but I'm subscribed to you because my son (not a kid anymore!) Has autism so I love your content & your attitude..it brings so much light into my day.
I was a dancer in my 20s- early 30s...a gymnast when I was younger..
A HUGE thank you for this info..I feel like I finally found answers to so many unknown things..
I was diagnosed with "fibromyalgia " and YES- if you have any psychological issues, they will write ANYTHING off as MENTAL. In my early 20s I was on antidepressants and have anxiety/panic disorder, and because back then I was on certain meds, the dr thinks I'm a "drug seeker" , I told her, I want a diagnosis, not a prescription!
I appreciate you SO much
Thank you for creating your channel, I love your attitude and you give me hope for a ton of different things.
Again, I know this is an "older" video, but I'm quite overwhelmed at times with my now adult son with autism (not his fault!!I mean because doing seemingly simple things take all my energy..my family is the only way I'm able to make it through. )
Thank you a million times.🙏🙏💜
I apologize for this long post. So sorry. 💐🤗
I have hEDS, and you nailed it. I also do not realize what isn’t normal when it comes to pain. I was not diagnosed until 50.
You’re such an inspiration to me, thank you!
Thank you for sharing your story. My daughter was diagnosed with hypermobility at a young age and now I am looking for a doctor who can help us understand if we have EDS. My symptoms over the years sound very much like yours and others with EDS, and I hope to get both of us better supports. I have slowly found the balance of exercise and rest, but it’s a dedicated balance. All the best to you❤
Hi Ella,
I've just been diagnosed at 56. My first symptom was my shoulder dislocating at 16 months old.
I also decided to see a Private rheumatologist who said I was a textbook case.
I can really relate to you saying, you think it's normal. I've always thought I must be rubbish because everyone must have this. If i told my parents something was sore, they would usually say, oh dear, rub it in or go for a walk. I was also a (ballet) dancer.
The consultant said that it's so bad now because it's been left untreated for so long.
I'm in so much pain everywhere right now but am over the moon to have a diagnosis. I'm being referred to the pain clinic, the gym, physio etc. I'm looking up stuff, videos etc. To try and help myself. Thank you for your video
You make such a great point about children not knowing what "normal" is unless specifically told. I took thought that my fatigue & struggles were "normal" & I didn't want to be a complainer or "lazy"...
Hi Ella, your video is very inspiring! I just been diagnosed with hEDS last month, and still learning about what does it really mean for me. I have been experiencing extreme fatigue for years, having stomach issues and nausea, and ongoing joint pain (currently my neck, but I also spent years with extreme pain in both knees that made me feel unable to walk - I had to do a lot of PT in order to improve it and be able to move again, but I still have to be really careful). Doctors never found anything wrong, but I kept looking for answers myself, and am glad that I got to a specialist that pointed out to and diagnosed hESD. I am very active person - a dancer, and I am just now trying to come to terms with the fact that I might need to lower my activity level, focus on self-care, lower my workload and find other activities that are safer for me..Thank you again for your video, I appreciate it a lot!
Hi Jana, can I ask you how you were a dancer despite so much pain? Did your pains become worse with age and you had to reduce your activity?
Thankyou for sharing this is really an eye opener for me
I literally didn’t understand until 32 (my age now) that not everyone has horrible pain and chronic fatigue constantly. It isn’t really hard for other people to sit or stand up for more than an hour or two…. I was just diagnosed with hEDS and I am so happy to see these videos! I didn’t know about the stomach pain associated. I’ve had stomach aches after almost every meal and never knew!
Funny to have this video today, as I've been to the rheumatologist today and I've been diagnosed with hypermobility. Some more tests were done and waiting for a full diagnosis. In the meantime I will try to focus muscle building exercises as that seems important to support hyperflexible bodies. About doctor dismissing pains I have it all the time, and I only got a ADHD diagnosis a couple of months ago and still on the road for ASD diagnosis. Curious to hear how your appointment goes with the specialist.
be very careful! physical therapy can actually make eds worse!
Such a inspiaring video. Recognize every thing. I diagnosted with hsd but I always think it is heds. My dauther has all the symptoms and is 14 years now. I want to the spialist whit her, now a see this video. Thanks a lot. Lots of love from Holland.
Thank you for your videos, very helpful and pleasant to see
Hi Ella, thanks so much for sharing about it! I am on the process of being diagnosed with EDS, found out about it watching Autism content, I'm Audhd, and learning about it just answered all the health issues I had my entire life! Please do more content about it, do you also have Mcas? That's my worse problem, since I was a baby, and also just figured it out...
I also have hypermobile elders danlos! And pretty sure I am adhd, and my eldest is autistic. I have heard these three things can cluster together, and I relate so much!
I have HEds fibromyalgia and functional neurological disorder, they snow ball one triggers another I believe.
I have ADD they say that’s on spectrum my daughter has Aspergers and ADD and hyper mobility.
We’ve not seen any specialist ever . Glad you have support.
I am recently diagnosed & cried watching this because I have been gaslighted by doctors & family my whole life. Your journey is the same as mine 😢
I have eds took years to find out and I feel upset about that but knowing I have it does help as I've always been frustrated with my body as my eds changed daily. I have accepted it but it has ruined my career choices, i just carry on and think positive !
I'm 23 and was recently diagnosed, the joy of knowing what's causing all this pain is such a weight off my shoulders
I feel everyone here...same
I have been currently "Diagnosed" HSD but I've had really bad service from the NHS so I'm now going private to get the right diagnosis procedure met as my family all have classical type symptoms. NHS is so poor for HSD or EDS care. I'm just heavily disappointed with my whole experience. My symptoms showed at birth & became disabling at 5 permenantly disabling at 19. Drs diagnosed me with fibro & FND & told me I was imagining my joint dislocations because I survived abuse. 🤦🏽♀️It was lockdown that helped me get diagnosed as I stumbled upon hEDS webinars. Thank you for sharing your stories with both Diagnosis'. I'm glad you now have the correct diagnosis. I hope things have improved for you both since this video.
Did you get diagnosed London it's a nightmare UK to get help decades now just got diagnosis of aspergers
You are fascinating but I relate so much to your story. I have been diagnosed with HSD and my doctor said that I could possibly have Heds but I am also in the process of having genetic testing done for other Ehlers Danlos Syndromes. I have some of the characteristics of having Veds. I have had some organs nearly rupture and my skin is thin and velvety soft instead of stretchy. I have had symptoms my whole life but I didn't have a major event until I was 40 when I blacked out from POTS. I was diagnosed with POTS first but right before that I had major pain in my neck for about 3 months and my primary doctor thought that it sounded like I had Viral Meningitis but I wasn't ever tested for it. I think I just had an EDS episode. That seems to be what happens to most people right before they are diagnosed. I am a Special Education Teacher and right now I am working with Autistic Students using a behavior program called ABA. So, you having Autism and EDS has just fascinated me. I have worked with higher functioning Autistic children in the past but right now I am working with I don't want to say lower functioning because they are very young (3 and 4 years old) but they are non-verbal. Hopefully, that will change. I really see a lot of intelligence already in them, they just haven't got to the point of being able to communicate with others. I really enjoyed watching this video and it was very helpful and enlightening. I can't wait to see more of your videos. I just subscribed. :)
I'm am autistic zebra also! I'm very happy that I came across your video. I am now subscribed and I'm looking forward to more content. Yay!
Annabelle: We're actually pursuing an hEDS diagnosis at 26, having had covid nearly kill us and be expected to cake care of family during that time put life in perspective. So like getting to the bottom of our joint issues sorta ended up being something we wanted to do we're finally getting around to and hEDS is actually the one that makes the most sense with everything else we have in common with some zebras with it we met more recently.
I am 14 and have been diagnosed after being misdiagnosed multiple times it is really hard explaining to people why I can't do things they can. It gets to the point to where I will play soccer for an hour and had to sleep for half a day to get my energy back up. People in school fi d it hard to believe that I have a medical condition because they can't see it. I have almost every single one of the symptoms and it is a lot harder then they think. my doctor explains that for me walking is like a normal person's running. We are still figuring everything out but let's hope we have a smooth road ahead l.
Took me 60 years to get a full correct diagnosis. With my family support and UA-cam videos I finally found what I persisted to find. HEDS and MTHFR with all their symptoms. Prayers
Are you any better eating just meat
Thank you for sharing your story with me, I appreciate it. I have cEDS and I also have Epilepsy. I either dislocate or subluxations or I have a seizure.
Looking pretty in this video. Like your hair like that and your jewellery ❤️
My daughter has hEDS and one of her first symptoms was gastroparesis, but the Children's Specialist where we are from diagnosed her with Stomach migraines as well.
I would love to see a video about what kind of stretches and workouts you do to help strengthen your joint muscles! Currently diagnosed with HSD but I think I most likely have hEDS and trying to figure out good workouts that won’t hurt my joints more
Also if you can talk about EDS and pregnancy/motherhood that would be great! I loved the one you did about autism and pregnancy
@@SodaSpeakNow how do I know if my daughter has HSD or HEDS? She has hypermobility and has painful joints, popping, and lots of skin issues.
@@Lovescoffeeandtea Hi i was just diagnosed myself yesterday age 47. My understanding in a nut shell is....
HSD : Is very flexible , can do cool party tricks with body parts etc ...
hEDS : ( the h is small because its a "branch" of EDS . There are many types, hEDS being the best to have so to speak, least dangerous) This is very flexible (usually gymnasts, dancers / ballet ) BUT you also have aching bones, sore muscles, skin bruises really easiliy , always tired.
Hope that helps. x
You're describing my life so much I have a referral because I got the stomach flu and everytime I throw up my blood vessels always pop it's normal for me.... So I went in and the doctor started asking questions and really thinks I have it only my heart seems really good
HEDSer here. I would love to see videos on how to overcome or deal with the overwhelming dizziness/grogginess/fatigue that hits me as soon as I get out of bed. Love a morning routine vid but seen absolutely nothing for people like me.
Loved this video. Like hearing about other people’s EDS stories/experiences.
The doctor told me to stay lying in bed for half an hour before getting up. It does help me.
@@Catlily5 hi! Unfortunately these days I seem to be struggling with my mental health. I struggle full stop to get out of bed everyday. Honestly just don’t want to get out of bed. Thanks for your response though.
@@joannedavies4958 I have bipolar disorder as well as POTS so I have gone through that as well. Lie in bed for half an hour after waking up (for the EDS). Then get up as much as possible. When I was really depressed I didn't want to move. It sucks. But I really did feel better after getting up and especially if I got out of the house (when possible).
A lot of your story here gave me chills because it sounds like you're telling my story growing up and becoming an adult! So far fibromyalgia is my diagnose, but I more and more think that some form of EDS is more correct, or at least an additional diagnose..
Just going threw diagnosis at 43 after lost my mum to severe ms and sons diagnosis to
Wow, my first medical memory is having terrible stomach pain. That was in the first grade. I am 39 today and just got my diagnosis of hEDs. What you said about pain was something that blew my mind. I didn’t know anything else, so pain was my normal and I didn’t know that it wasn’t normal for everyone.
I have children. All three have hypermobility, and I am waiting to hear back from their doctor about an ED work up. It makes me so upset to think that they may have inherited a life of pain from me. My oldest has ASD. She is the most bendy. I love my daughters with all of my heart, but if I could have spared anyone from it I would. I would have maybe not had children if I knew that they would have a 50/50 chance of inheriting it. I know I didn’t know, what I didn’t know and I can only do what I can to help them, but I still don’t feel good about knowing.
I just broke and sprained one ankle and sprained the other from missing a step. I have had several ankle sprains and mentioning this to my rheumatologist is what got me my diagnosis. I didn’t know that it was weird to subluxation in your hips, have your shoulder pop out of place in your sleep and that being extra bendy was anything more than a party trick. Now I know. Now comes acceptance.
Thank you for this video
Yes, party tricks when I was younger, no diagnosis. Fast forward in life...got married had 3 girls and found out about hEDS when my oldest was an adult. Come to find out I'd married someone with Ehlers Danlos so my 1st n 3rd have a double whammy. My youngest has had all her teeth pulled, my oldest has lost most of her molars. Bad knees, even a bladder leaking into your uterus causing EIGHT miscarriages!! Many more symptoms to list. My middle daughter takes more after me....more mild symptoms. I love my girls, but wished I'd have known, I might not have had kids either.
How do you not know that you shouldn't have children? I just KNEW. Your body tells you these things if you tune in and listen.@@lindaforbes7240
Rccx gene theory
6:30 Absolutely, I feel sometimes that I can't keep my head up or on, and must lay down to avoid injury.
So far, my (still undiagnosed) story closely mirrors yours, only I was a swimmer instead of a dancer, and I've been caretaker for other people's kids, but not had my own kids. I spoil my brother's kid instead. 🥰💜
9:40 easy bruising, stretchy skin (I don't bruise easily, but my sister and dad do!)
12:40 physiotherapy . . . hydrotherapy.
Thank you, Ella! Been following you a while and hadn't seen this one. Definitely need to push for referrals so that my sister and I can get properly assessed for EDS or another hypermobility disorder. We each have an ADHD diagnosis and lots of sensory and connective tissue issues. 💜💜💜💜💜
You've just described my life! It took until I was 56 to get my diagnosis so a lot of damage has been done
I'm very new to your channel as last week in hospital I was diagnosed HEDS. I also have a severe fibromyalgia and was diagnosed in 2015. I to used to be a good dancer too
My hEDS was initially misdiagnosed as fibromyalgia as well. Hoping you can find a good doctor who is knowledgeable about EDS who can treat you.
@@Dulcimeristheds causes fybromyalgia from the autism I think
I've just been diagnosed with hEDS. My first symptom was when I was 5 years old which was knee pain & now I'm 37. 🤷♀️
Hello 🥰 just popping on to say hi and let you know that I set up my UA-cam channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
I'm being honest I had the same thing a different version but the same basic effects I feel for you because I can relate personally
Really helpful thank you 🙏
I fear for the painful fingers because I love to draw, but the pain on legs, stomach and neck are so intense. Last night I struggle with the neck and face and omg they really seems like is going to fall off 😂😭 I totally understand you. I've been diagnosed with TMJ and fibro, but I trying to see a good doctor to see the EDS symptoms and ADHD
Thanks for your story. I enjoyed watching it! And not full of video editing carry on, which is so common in this genre of video. A question: What is the cause of the fatigue that you get after such a small amount of exercise? Thanks
Thank you 😘 I cried through the whole video😭 I'm from Belgium and there's no such thing here as a hypermobility clinic... I'm 34 and i was diagnosed last year with hypermobile eds. (i think vascular 2 btw...) Before that the only diagnosis i got was "lazy" and "go to a psychiatrist"... My life was hell but i also had a mentally abusive upbringing so i blamed it on that and the pain and fatigue i explained away like you did...my whole life is a struggle... So i was soooo excited when i finally got a doctor to believe and diagnose me! But now it s a year later and i have medication but that's all i got out of it and i still can't function very well.. I don't have any friends or family, no diploma, no drivers license, no job. I would honestly be dead without my boyfriend! So you would think i could get a disability cheque or something, a social worker maybe of some sorts... But no... eds doesn't seem to exist here🙄 So thank you again cause i ve been "joking" for years and years that i'm autistic but i have a high IQ and i thought(don't know why🙄) it wasn't possible.. But now! 🤯 Autism is definitely recognized, might be my way into the system... Gonna start researching immediately!
I wish you and everyone here the best and send you a big ball of healing energy!
😘 💌💥🥰
I thought Belgium was better than the Netherlands! my goodness, I'm in the same boat. Got to a really bad point now and need to go get private health care in another country😔
Paris Ehlers Danlos Clinic is just down the road for you!!!!
@@butanywhereik dacht hetzelfde over Nederland 😂
Ben nog steeds aan het sukkelen. Ik dacht toen ik dat schreef dat ik effectief een diagnose had maar dat was blijkbaar niet officieel..
Ik heb verschillende huisdokters gehad, geen ene die mij gelooft. Ook veel onderzoeken gehad die op niets uitdraaien. Ik ben onlangs wel iemand tegen gekomen wiens vriend het ook heeft en ook geen officiële diagnose vastkrijgt. Maar ze vertelde mij over een dokter in Brussel die het wel bevestigd heeft. Ze gaat mij de gegevens hiervan nog bezorgen.. Ik ben ondertussen ook uitgekomen bij t uz gent waar ze die diagnoses wel doen. Heb een formulier opgestuurd maar nog niets van gehoord. Ik hoop dat er daar iets uit komt want ik ben na 10j terug werk aan het zoeken en het lijkt een onmogelijke taak...
Ik wens je het allebeste en hoop dat je net als mij ondanks alles toch blijft volhouden! ❤🌹
@@MsMesemthank you for wanting to help me but i can't even get to the other side of the country let alone to paris😂
Short train ride. I will have to go to Paris and that's a 5 hour one way trip for me.@@Zjackie_K
I had the same neck pain till eventually they did X-rays and found that I had degenerative disc disease. Also diagnosed with autism. I don’t have a hyper mobility diagnosed yet. Your story is very relatable, thank you for sharing.
I have dddd heds apparently Dr schubiner says dddd doesn't cause pain
This is so weird, I have a less severe version of your problems. Doc is currently exploring EDS as the cause of my fatigue and dizziness (plus flexibility), and autism.
I have hyper mobility and a long history of neck and shoulder pain. It turned out, after neck CT scan and MRI with contrast that I have a number of spinal cord issues such as spinal stenosis and osteophytes and degeneration. I have had two spinal fusions and now need a third surgery. You mentioned that you never got those scans, you should get your neck scanned…spinal cord issues are common with EDS.
I'm Autistic too!! I've been diagnosed with Fibro. and I'm wondering if this is the real ticket!
Interesting. I have this neck pain as well since I was 13. Back then I could trigger them just by wearing a necklace, which I don't do anymore. I can remember that one physiotherapist once said my neck is hypermobile. I also have this fatigue, but that are the only symptoms so far that go in this direction.
I've also stopped wearing jewelry!
I am trying to currently get a diagnosis for hEDS! When I was 5 I spent 7 years in plaster casts on my ankles as my ankles were so flexible that I couldn’t walk. This has caused me to have excruciating pain in the ankles throughout my young adult life (I am 25). I have also had medical migraines and fatigue since I was 17, and chronic constipation (and stomach pain!!) since I was 23. I feel that there’s too many links to hEDS, and I’m fighting for a diagnosis!
I have confirmed EDS Hypermobolity Syndrome. My knees started subluxing (dislocating) at age 11. Had my first knee surgery at 23 after countless dislocations. Another, a Fulkerson Ostetomy, at 30. Now it’s my shoulders and heart. 4 ablations and a bankart repair later....and now my other shoulder is torn from a recent partial, which we are trying to help with physical therapy. It probably won’t work. I’m only 40.
I, too, have migraine issues. And anxiety. Bad anxiety. Girl, I feel ya. Pain is my constant companion these days.
All of this and more... my husband and I have been together for 30 years (since I was 18) and my hEDS has really progressed. He doesn’t believe any of it, even when the doctors tell him how sick I am. He just wants more and more from me and is resentful that I go to PT once a week and also work out with a trainer 3x’s a week. It is very lonely and often depressing having hEDS.
💔
I PUSH through hard every day (I used to be a firefighter for 14 years so I know how to push through.) and my husband and kids just ridicule me relentlessly.
That's textbook disability discrimination and harassment, unfortunately. I'm sorry that you have to experience this. Can you passive-aggressively put on a whole bunch of Icy Hot everywhere that you hurt, so that they have to smell your pain?
keep up ❤
I just received my hEDS diagnosis two weeks ago. I am in the States so I was finally able to see a specialist rheumatologist. He ruled out everything before diagnosing me. I scored an 8/9 on the test which was wild because I underestimated how hyper mobile I actually am. I have a bad hip labrum tear and osteoarthritis as well
I tried to do the math with you at the beginning and my brain went “three”. 🤦♀️😖
You're story sounds so much like mine except it took 40 years to get diagnosed. I thought the same way growing up. I thought everyone struggled & I too was just being weak. It messed w/ my head. Been misdiagnosed all those years. The treatments were worse than the disorder.
my mom had these flare ups for her back all the time growing up. Was diagnosed with autism but I am starting to question all of my parents injuries, bad posture, flare ups. Also I had gas so bad once I cried on the ground. I'd subjugated my hip and never fixed it because I didn't know that's why I had hip pain at the time. I just knew my hip hurt. I just fixed it. I also have been cracking my shoulders into place each day since fixing my subjugated joints. My muscles are so stiff after like five minuets of any sedentary action. Writing hurts, walking hurts, etc. I question how my parents did it with no support. They are great I am thankful that they paved a way for me.
thank you thank you thank you
I have ehlers-danlos syndrome and I couldn’t wish this condition on even my worst enemy
I am joint hypermobile and thought as a kid it only extended to my limbs, I had no idea my digestion is connected, my WHOLE lifestyle changed when I ruptured 2 tendons in my foot while sleep, how do you do that? Chronic Fatigue, Chronic Migraines, Chronic Back Pains, dislocated shoulder, fingers, toes, whatever, I have EVERY darn ED Symptom there is!
My dr diagnosed me years ago but I was very VERY doubtful - Thank you for sharing!
Thank you for this . Could you do a good video on how to strengthen the glutes without stretching . I have sij and piriformis and have made it worse by stretching and so not doing that . Physios are fairly useless with us bendies
Your story is very similar to mine. I used to get so tired at work I would go somewhere to lay down during lunch break.
Thanks!
Thanks for this video I was just diagnosed with chari malformation and had a major brain surgery been suffering from epilepsy for 11 years and now being genetic tested for eds I have 7/9 of having this
I had stomach pain at that age around 8 too. Doctors had no idea what it was.... so anxiety , psychologic.... and searched no more.