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.
@@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 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.
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.
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 😭🙏
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
Hello 🥰 just popping on to say hi and let you know that I set up my TH-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.
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
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 💜
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 !
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?
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 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?
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 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
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
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
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.
@@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!!
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 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 !
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.
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. 😔
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.
Hello 🥰 just popping on to say hi and let you know that I set up my TH-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
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
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..
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❤
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"...
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!!!
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.
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.
Hello 🥰 just popping on to say hi and let you know that I set up my TH-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 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. 💐🤗
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😔
@@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! ❤🌹
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
@@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
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
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!
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.
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 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 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
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.
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 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.
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?
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 don’t have psychological problems and doctors still didn’t take me serious for years until to be diagnosed later with ENDOMETRIOSIS AND EDS proving that all the pain I’ve suffered was indeed very real and not just in my head
I have Endometriosis, too (diagnosed at 19 after 8-9 years of begging for help) and today I informally was diagnosed with EDS! Still have to thoroughly evaluate it but I’m almost 30 and so beyond frustrated that my doctors have disregarded all my symptoms for years.
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
Abdominal migraines is a diagnosis. Usually appears in children 10 years old and doesnt requiere headaches to be part of the symtoms in moment of diagnosis. However, it either goes away completely in adolescents or develops into typical migraines with headaches and nausea as the child becomes an adult. I do consider it a dignosis of exclusion like you ruled out everything else so you end up diagnosing abdominal migraine because everything else was rule out. There is no clear test to diagnose. Just wanted to clear that up. However, I do think your doctors should have follow up and reconsider your diagnosis when you didnt get better from the abdominal pain.Thank you for making this video. Really helps as a doctor to learn by stories more than just reading. Wishing you the best.
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. :)
Your story seems to mirror my own. I'm hypermobile (undiagnosed), diagnosed autism, age 43 female. Do you have any advice on getting through the day, working full-time? I have chronic pain and fatigue. I struggle all the time, but I just push through 😢 Thank you. Your story is a small comfort to me.
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.
@@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).
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 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.
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
I have classic Ehlers Danlos….. my story is much different at a young age. My joints started subluxing and dislocating. They started operating on them at age 17 with my shoulders, my knees then my thumb…. when I got older, the EDS went into my spine and disc started to rupture out in the vertebrae collapsed into itself. I had one spinal surgery after another because above it and below it kept breaking. I’ve had 15 (spine Surgery)’s now I am pretty well relegated to the wheelchair and had lots of “unintentional consequences “as a result of physicians not understanding EDS…. these unintentional consequences resulted in several other surgeries that were not problems before the surgery that was done to supposedly help me be mobile…. if there’s only one bit of advice, I can give you is don’t start with surgeries they don’t work well in EDS patients and it just creates a domino effect of instability. I’m glad you were doing these videos for people. Please give more information of where people can go with doctors that might know what they’re doing with EDS patients that would be helpful
My family member went through this, because doctors not believing her for years, my family member is in their 20's and needs one on one assistance as they are in diapers and can't take showers or go to the bathroom by herself. If doctors would of listened she may have avoided this or at least would of dealt with complete assistance much later in life. 💔💔 I'm glad others got diagnosed with it long before the stage my niece is at. Just wish my niece was also heard as I'm completely heartbroken,I'd take her place if I could.
Took me 60 years to get a full correct diagnosis. With my family support and TH-cam videos I finally found what I persisted to find. HEDS and MTHFR with all their symptoms. Prayers
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..
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
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.
Do you also have chiari malformation? It seems that chiari, eds, and asd are often comorbities of eachother. I have chiari and eds and I highly suspect asd. My 21 year old has eds and suspected asd. And my 5 year old has eds and asd. Thankfully, my 5 year olds neurologist is very knowledgeable in all and pinpointed it the first day she met him.
My pain mgmt dr is so rude & thinks I exaggerate...yet my other dr, in about ten minutes of describing / showing him how my hips and other joints pop out, and the knee pain- he started to diagnose me with EDS type 3. I was (I hate saying "was") a dancer and, when I was a kid, a gymnast. Like you said- I never knew. And being extra flexible is seen as a good thing with those so it's hard to know ! Also, my son is on the Autism spectrum, he is nonverbal (clearly im the opposite there!) and I truly think I may be as well. thank you for your channel, your content ..it is SO necessary for my sanity!! Also, I just turned 43 and was diagnosed at 42... and it wasn't a full on super formal diagnosis but it made SO many weird things I never knew why they were happening, finally make sense. My other, mean pain management dr thinks its " because of emotional trauma" ...-i do have panic disorder and some other stuff ..and she diagnosed me years ago with fibromyalgia, but says "that just isn't possible" when I tell her about the hip & other joint popping & a feeling like I've been sawed in half at the waist..its sooo painful! - (I'm.so sorry to go on this long) I'm looking for a new doctor. Again I apologize for this, I just felt like finally someone understood my life 99.9 percent and it means SO MUCH. Thank you and I'll be watching anything you put out but I felt so understood hearing you talk about all the EDS stuff. 💜 I can't thank you enough.💜
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. 💜💜💜💜💜
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...
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.
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
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.
May is also Lyme disease awareness month as well you have to rule out Lyme disease or tick borne disease before you can have any autoimmune disease and there is no testing in public that works only private test and drs.
I do understand what you're going through with ehlers-danlos syndrome because i have it and being autistic but chronic pain I cannot relate to though but I do have hypermobility and arthritis because of it so I do understand some pain aspect either way you're not alone
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
Ive experience the joint pain, strange sensory pains like burning and electical shocks, muscle tightness, popping all over my body like its sliding apart and the tension pulls it back, vision problems, ect. Spent years trying to figure out whats wrong. Then recently said to my family, does anyone else feel like half their body is different than the other with weaker muscles and more nerve pain on one side. 3 cousins, my grandmother, and my mom all said yes and have the same issues all slightly differing. I knew we had super soft stretchy skin but never imagined thatd be a problem. My grandmother taught me to morturize at a young age to prevent the scarring on the hands, knees, ankles, and elbows. My cousins and I would pop our joints and show off to each other how bendy we were. The irony. Its nice knowing im not alone in this and knowing how to treat the symptoms now so they dont run wild. But unsure how to begin going to the doctor. Ive seen doctors before but get burnt out and stop going for long periods bc its hard to explain the symotoms and i want to pretend nothing is wrong. Any suggestions would be helpful on what type of doctors to go to or get referrals to and how to go about that. Prayers for everyone managing these widespread pains. 🙏
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
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.
Hello fellow zebra. Pain started at 21.... diagnosed improperly, then finally got my hEDS diangosis in 2016 (after self-diagnosis) by a geneticist I booked on my own. Now I'm just waiting for my ASD evaluation...
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 😭🙏
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
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 TH-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
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.
This has been exactly my experience my whole life dang..
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
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... 😘
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 !
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 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 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 💕
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
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
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
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!!
I had stomach pain at that age around 8 too. Doctors had no idea what it was.... so anxiety , psychologic.... and searched no more.
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 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 have an assessment for EDS Type 3 on Monday 22nd, thank you for this video!
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!
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. 😔
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 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 TH-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
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
Thank you for speaking on your experience. I can't tell you how much you are speaking into my life. I feel less alone.
Watching this is like hearing my own story and I appreciate you making it so much 💙
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..
Talking to my rheumatologist today about this, so good timing! 😊
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.
My grandson has EDS and now I have come to the realization that I am autistic.
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❤
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 ehlers-danlos syndrome and I couldn’t wish this condition on even my worst enemy
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"...
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!!!
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
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.
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
I'm Autistic too!! I've been diagnosed with Fibro. and I'm wondering if this is the real ticket!
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 TH-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 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. 💐🤗
Thank you so much for sharing your story! I want to give you a hug!
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 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
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
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.
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!
I'm so glad I found your channel!!
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.
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 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 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
After more than 3 decades just got diagnosed today, thank you for your helpful video
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.
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 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.
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 tried to do the math with you at the beginning and my brain went “three”. 🤦♀️😖
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 don’t have psychological problems and doctors still didn’t take me serious for years until to be diagnosed later with ENDOMETRIOSIS AND EDS proving that all the pain I’ve suffered was indeed very real and not just in my head
I have Endometriosis, too (diagnosed at 19 after 8-9 years of begging for help) and today I informally was diagnosed with EDS! Still have to thoroughly evaluate it but I’m almost 30 and so beyond frustrated that my doctors have disregarded all my symptoms for years.
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
Abdominal migraines is a diagnosis. Usually appears in children 10 years old and doesnt requiere headaches to be part of the symtoms in moment of diagnosis. However, it either goes away completely in adolescents or develops into typical migraines with headaches and nausea as the child becomes an adult. I do consider it a dignosis of exclusion like you ruled out everything else so you end up diagnosing abdominal migraine because everything else was rule out. There is no clear test to diagnose. Just wanted to clear that up. However, I do think your doctors should have follow up and reconsider your diagnosis when you didnt get better from the abdominal pain.Thank you for making this video. Really helps as a doctor to learn by stories more than just reading. Wishing you the best.
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!
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. :)
Your story seems to mirror my own. I'm hypermobile (undiagnosed), diagnosed autism, age 43 female. Do you have any advice on getting through the day, working full-time? I have chronic pain and fatigue. I struggle all the time, but I just push through 😢 Thank you. Your story is a small comfort to me.
Thank you for making this video and love how you stay positive while keeping it real. :)
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).
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 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
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
I have classic Ehlers Danlos….. my story is much different at a young age. My joints started subluxing and dislocating. They started operating on them at age 17 with my shoulders, my knees then my thumb…. when I got older, the EDS went into my spine and disc started to rupture out in the vertebrae collapsed into itself. I had one spinal surgery after another because above it and below it kept breaking. I’ve had 15 (spine Surgery)’s now I am pretty well relegated to the wheelchair and had lots of “unintentional consequences “as a result of physicians not understanding EDS…. these unintentional consequences resulted in several other surgeries that were not problems before the surgery that was done to supposedly help me be mobile…. if there’s only one bit of advice, I can give you is don’t start with surgeries they don’t work well in EDS patients and it just creates a domino effect of instability. I’m glad you were doing these videos for people. Please give more information of where people can go with doctors that might know what they’re doing with EDS patients that would be helpful
You've just described my life! It took until I was 56 to get my diagnosis so a lot of damage has been done
My family member went through this, because doctors not believing her for years, my family member is in their 20's and needs one on one assistance as they are in diapers and can't take showers or go to the bathroom by herself.
If doctors would of listened she may have avoided this or at least would of dealt with complete assistance much later in life. 💔💔
I'm glad others got diagnosed with it long before the stage my niece is at.
Just wish my niece was also heard as I'm completely heartbroken,I'd take her place if I could.
Took me 60 years to get a full correct diagnosis. With my family support and TH-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
Thankyou for sharing this is really an eye opener for me
I'd been watching you for 'AuDHD' content and this popped up, and I thought "Of course she's a bendy" 😄 Same as me!
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
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
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.
Do you also have chiari malformation? It seems that chiari, eds, and asd are often comorbities of eachother. I have chiari and eds and I highly suspect asd. My 21 year old has eds and suspected asd. And my 5 year old has eds and asd. Thankfully, my 5 year olds neurologist is very knowledgeable in all and pinpointed it the first day she met him.
What symptoms does Chari cause you
My pain mgmt dr is so rude & thinks I exaggerate...yet my other dr, in about ten minutes of describing / showing him how my hips and other joints pop out, and the knee pain- he started to diagnose me with EDS type 3. I was (I hate saying "was") a dancer and, when I was a kid, a gymnast. Like you said- I never knew. And being extra flexible is seen as a good thing with those so it's hard to know !
Also, my son is on the Autism spectrum, he is nonverbal (clearly im the opposite there!) and I truly think I may be as well.
thank you for your channel, your content ..it is SO necessary for my sanity!!
Also, I just turned 43 and was diagnosed at 42... and it wasn't a full on super formal diagnosis but it made SO many weird things I never knew why they were happening, finally make sense.
My other, mean pain management dr thinks its " because of emotional trauma" ...-i do have panic disorder and some other stuff ..and she diagnosed me years ago with fibromyalgia, but says "that just isn't possible" when I tell her about the hip & other joint popping & a feeling like I've been sawed in half at the waist..its sooo painful! - (I'm.so sorry to go on this long) I'm looking for a new doctor.
Again I apologize for this, I just felt like finally someone understood my life 99.9 percent and it means SO MUCH.
Thank you and I'll be watching anything you put out but I felt so understood hearing you talk about all the EDS stuff.
💜 I can't thank you enough.💜
13:00 I like your chipmunk impression.
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. 💜💜💜💜💜
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...
Wow! This explains so much of what is going on with my son. Thank you so much!!!
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.
Enjoyed your enthusiasm and up beat attitude . Keep up the good positive energy!
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
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.
Thanks!
May is also Lyme disease awareness month as well you have to rule out Lyme disease or tick borne disease before you can have any autoimmune disease and there is no testing in public that works only private test and drs.
It was super interesting learning about your journey, thanks for sharing and I look forward to more content in future
I do understand what you're going through with ehlers-danlos syndrome because i have it and being autistic but chronic pain I cannot relate to though but I do have hypermobility and arthritis because of it so I do understand some pain aspect either way you're not alone
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
You’re such an inspiration to me, thank you!
Ive experience the joint pain, strange sensory pains like burning and electical shocks, muscle tightness, popping all over my body like its sliding apart and the tension pulls it back, vision problems, ect. Spent years trying to figure out whats wrong. Then recently said to my family, does anyone else feel like half their body is different than the other with weaker muscles and more nerve pain on one side. 3 cousins, my grandmother, and my mom all said yes and have the same issues all slightly differing. I knew we had super soft stretchy skin but never imagined thatd be a problem. My grandmother taught me to morturize at a young age to prevent the scarring on the hands, knees, ankles, and elbows. My cousins and I would pop our joints and show off to each other how bendy we were. The irony. Its nice knowing im not alone in this and knowing how to treat the symptoms now so they dont run wild. But unsure how to begin going to the doctor. Ive seen doctors before but get burnt out and stop going for long periods bc its hard to explain the symotoms and i want to pretend nothing is wrong. Any suggestions would be helpful on what type of doctors to go to or get referrals to and how to go about that. Prayers for everyone managing these widespread pains. 🙏
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
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.
Hello fellow zebra. Pain started at 21.... diagnosed improperly, then finally got my hEDS diangosis in 2016 (after self-diagnosis) by a geneticist I booked on my own. Now I'm just waiting for my ASD evaluation...
i thought there wasn’t a genetic code that was known for hEDS currently and it was diagnosed via a checklist of symptoms
wait is it true that you can get diagnosed through genetic testing? please let me know what happened!