15 years with scoliosis. 3 years with chronic gi problems and urinary incontinence. a lifetime of pain, broken/dislocated bones, bruising, extreme fatigue, etc. No matter what i said no one took me seriously. Yet a random youtube video on adhd and eds diagnosed me perfectly. Now i have an appointment booked. I dont know if i should be relieved at finally knowing or angry at everyone who didnt take my pain seriously for 21 years
It’s always so refreshing seeing someone talk about this! Eds has changed my life the older I’ve got I can no longer work, thankfully I’ve had two healthy children but I can now no longer carry children had plates and screws to hold my pelvis and hip together
So I have been diagnosed with fibromyalgia, but I have had friends suggest hEDS to me and honestly I have so many comorbidies that occur with EDS that I am suspect that I may have it. I am almost in tears finding out that stretchy skin isn't always a factor! I had wondered for the longest time! I'm going to bring it up with my new gp
Thanks for clearing this up! I have EDS as well, and I have been told my conditions are a myth, and I love seeing people who understand. 🙃 Also, I was at a dentist, and because of EDS, Novocaine does not work. When my parents told the dentist that, he laughed and went on using it. 🦓 🦓 Stay strong!
Thank you for watching :) Sorry you've been told your conditions are a myth - it seems to be such a common experience for people with EDS. I've also heard about things like that not working for EDS patients - there definitely needs to be more education for medical professionals doesn't there x
They don’t use Novocaine, which is what they told me, lol. I was just like, well, whatever you use, prepare a bucket of it, because that’s what it will take
This is so helpful! I love your video, and appreciated everything you said. I just got diagnosed with eds and it's overwhelming, but I'm excited to find other people and have resources to share with my friends and family! Thank you, thank you, thank you!!! 🥰
Thank you for making this video. A few descriptors for me: My EDS presents as joint pain. My skin is velvety. I have to walk with a cane when I don't get cortisone shots. I know my symptoms have continued to get worse. I don't have dislocations. I'm lucky in that, but have recently started subluxing in my chest plate. Thank you for the reminder that I'm not alone.
I loved this. I also have hEDS and POTS as well as being a liver transplant recipient due to my urea cycle disorder. These disorders need more awareness and youre doing the good work 😘
Also just wanted to ask. If it makes you uncomfortable dont answer. I have very mobile ribs and they move in and out very easily. Is this a common thing with EDS?
Thank you for your comment. I'm so sorry for the late reply - I've been struggling to keep on top of things with my health not being great, but hopefully I'm gradually getting there! I'm so glad you liked my video - thank you for watching! Mobile ribs are definitely a common thing in EDS - I know a lot of people whose ribs dislocate or sublux because they move around so much. Not much fun as it can be very painful (as I'm sure you'll know!) xx
I was told by my rheumatiod doctor that I have eds. Hypermobile. I'm 53 . And I am happy that finally I have an answer. Honestly years of weird deep aches, irritable bowels, joint pain, diagnose with raynouds syndrome, fibromalga...so much, wondering why I hurt...now finally all those added up. It is amazing that it took so long to get here but now I can educate myself and doctor and I can have a plan or plans rather to a healthier and hopefully joint stable practices. Take care ❤
I’m so glad you’ve finally got a diagnosis. It’s awful having to wait so long and spend all that time worrying and wondering about what’s wrong. But I’m glad you now at least have an answer and can work on learning to cope with and manage your EDS xx
My daughter has had problems since birth. She also has epilepsy and her doctors just focussed on her seizures. She has just been diagnosed with hypermobile EDS and we have many answers to so many random problems throughout her life. She was diagnosed with EDS a month ago and has just had her 38th birthday two weeks ago. The only reason they looked further is because she has been in a wheelchair for the last six months for ‘no apparent reason’ other than she could no longer walk due to pain.
Ive just been diagnosed after 60 yrs , abs fuming is not the word ....living a life of hell being shunned ,sneered ,even laughed at , just no words 4 days prior to my 60th Birthday
Oh, Debby! I so understand. Decades of going to the doctor being dismissed, condescended to, being "to young" to have pain "like that" to now being told "at your age" you need to expect some pain. I still experience moments of red hot raging anger because of the way scores of doctors treated me, my loss of career, holidays I couldn't participate in, but mostly now I am grateful to have a diagnosis, a treatment plan, a support team and the understanding and knowledge to live my best life moving forward. The best thing I have done so far is weight training with an incredibly capable personal trainer. I have found him to be better than any of the physiotherapists I have had over the years; my balance has improved, some joints subluxate less and I can confidently do activities I have avoided for years (stairs in particular). Good luckto you! I'd send you a big hug but my shoulder is wanting to subluxate at the moment...
I'm 45 and have an appointment on Thursday to request a referral for a Heds diagnosis. I fully understand your anger. Throughout my life I've had pain starting at only 6 when I had to give up gymnastics due to the pain. Over the years I saw the doctor quite regularly and at one point told him that it felt like my hip was dislocating when I fell over so many times, he laughed at me. Told me it definitely wasn't dislocating but did refer me to an orthopaedic surgeon. I had 2 exploratory surgeries on my knees under the age of 18. I was told my knee would need replacing due to damage of the patella but at that point was told I was far too young... At 27 I had open surgery for a labral tear, at 31 gallbladder removal, in the last 2 years they've found a sliding hiatus hernia and a schatzki ring... I've had palpitations, headaches, fainting spells, dizziness, nausea, bloating, constipation, bladder retention but worst of all for me... PAIN. Almost every joint has pain but the worst affected are my shoulders, hips, the base of my spine, wrists, fingers and knees. I scored 7 on the beighton test. I became suicidal when my new doctor said she thought I had fibromyalgia and I'm sure without my husband and son's I would have ended my life then. I'm tired of not being listened to, of having a smorgasbord of symptoms that on their own gets ignored but when put together clearly shouts Heds. I am now armed with the knowledge that my cousin has just received a Heds diagnosis via a private doctor. I have requested a completely new doctor and have high hopes of just being listened to for a change. I'm hoping it doesn't take another 15 years to be diagnosed as it did for you.
@@Hollyisthedog Should be enough to diagnose you Holly you have papules on the inside yr ankle ?? That just sounds like me , "Exactly like me" with Gymnastics n dancing ,Swimming Netball thats what kept me going i was exhausted after ever session to the stage i dropped there are actually no words can express how mad i am n i know what you mean about the kids keeping you going just prayed 50 yrs for a brighter day it is hell on earth still to this day, i had gallbladder moved to at early age, i have Hiatus Hernia , Stomach Hernia endless stuff that i can reel off honestly ,i really feel for u ,most drs have never heard if it x
@@debbyhateley6747 I have small whitish ball things on my heels (yes that is the medical term for them!) They don't hurt but I saw a video from Izzy Kornblau (sorry if I spelt that wrong) that said they are also indicative of Eds. I chose a doctor who is fairly newly qualified in the hopes that she isn't arrogant enough yet to discount everything I say! Hoping I made the right choice but if she doesn't work out I'll try someone else til I get the answers I need. It's been 40 years and enough is enough. And it's subluxation that I'm struggling with, I dislocated my big toe once but that was accidental and although it hurt I swear the constant subluxations feel so much worse cos they're constant, every morning I'm having to crack my hips and shoulders back into place to get some pain relief, I don't know what maneuver I need to do to get the base of my spine back in place though and it's that that keeps me bedbound at times. There are so many little symptoms that it's impossible to name them all! I know EXACTLY how you feel too!
I am so glad I have found your videos! I haven’t watched them all as yet but am planning to. I am waiting to be officially diagnosed at the moment and was told about EDS by chance, I had a laparoscopy to have a look if any cause of pain could be found and the doctor that did the surgery diagnosed me before the surgery. He’d seen multiple patients with similar symptoms and was doing research into it. It was a lucky coincidence, otherwise I’d still be trying to find answers. I’m having lots of problems with my GP though who just doesn’t understand what I’m going through. I’d appreciate if I could ask you some questions and get your (or anyone else’s) advice. I’m actually in tears writing this as it feels like I finally have people who understand xx
I have EDS and I thank you for clearing things up!!! Oh my goodness that’s crazy: EDS IS VERY PAINFUL, for people to think that about it , My neurologist’s PA said that “ oh it means that you are flexible “ Um, no it causes me pain and other complications, too! I have Classical EDS, I am Hypermobile in my hands and my neck( I can turn my neck around like a 🦉). I have stretchy skin on my hands, under my eyes and some on my neck. I wish everyone would read upon this so they can be educated and learn facts versus myths.
Sorry for the late reply - I haven’t been able to post/film for quite a while due to health. Thank you I’m glad you found it helpful. Yes it’s a shame that not everyone understands how painful EDS can be. There definitely needs to be a lot more education amongst medical professionals xx
This is a fantastic description of EDS. Thank you for sharing it. I've been misdiagnosed since I was 4 years old, I'm still undiagnosed with EDS but I know I have either hsd or EDS. I just need a specialist who knows the criteria to see me. I believe I may have hEDS but my skin is stretchier & my skin is scarred everywhere, to the point I thought that was why a zebra was the mascot of EDS🤦🏽♀️you're video brings so much awareness to it. Thank you. ❤️🦓
Went to college for Biomedical engineering and Biological sciences, but wasn't able to graduate due to my variety of symptoms. My education led me to seek out a geneticist after almost 11 years of pain. (25years old now, hypermobility since a child) I'm awaiting results for classical EDS or hEDS. Thank you for this video! Information is scarce on this disease (in depth) I'm finding.
Hello. I have come across your profile today. Your videos are extremely informative and helpful. And you seem so lovely. I will definitely be watching all videos you make and I have subscribed. I was wondering if you could do a video on pip. I am struggling to want to do a claim because people say it’s too difficult to pass. I am however running out of money. And I’m deeply ashamed to ask for help x
I mentioned someone asking me if I had it to my GP and she was just like, my cousin has that, and I did not realize how much sense that would make... so like, the only reason it took so long for me to be diagnosed was because any time o came across it I was like "I relate but it's rare so I probably dont have it" for a few years... she went through the hEDS checklist with me (it was an over the phone appointment cuz the rona) and was like, it makes a lot of sense with a bunch of small things you've brought up and we never figured out what was going on with it. She has been my GP for over 10 years and a lot of the things on the checklist were things in my file at one point or another. My brain still feels kinda like it can't be true cuz all I've ever heard was about the struggle to get diagnosed, even after her agreeing and my physiotherapist (who has treated the only other person with EDS to have gone through their office) also agrees that it makes way more sense cuz she had been seeing me for 5 years for a foot I ruined a tendon in by walking down the hallway of my apartment building...
I feel for you even though I'm a gene carrier for eds my oldest son had type 9 he pssed away at the age of 33 and I will be 60 this year I'm just now feeling the symptoms of eds I have broken my bones, I have stomach problems and joint pain headaches,plus blood pressure problems .
subluxations hurt so bad man. i get them all the time in my knee (only one, i had surgery on the other one years ago for multiple and frequent full dislocations). my fingers too.i think i even had a subluxation in my jaw a few weeks ago.
So sorry it took so long to get your diagnosis. That must have been an incredibly frustrating process. I can imagine it must have been quite a relief to finally have some answers xx
For me with pain its both, as I would have subluxation in my wrist or ankle and I wouldn't feel anything, but my collar bone feels like I broken my bone as I've had 2 accidents at age 7 or 9 and broke my right wrist and I've had constant problems ever since and my upper left arm I landed on it to protect my head and ended up fracturing the bone near the shoulder joint and I've had problems with that ever since too, and I was age 12 when I broke my arm. And I've also had subluxation in my chest near my heart and needed an ambulance as had no clue what was happening, when they examined me they saw my rib slipped out of my breast bone and I sighed with relief as I knew it wasn't my heart or lung. After that I massaged it back into place and have been extra careful and it hasn't happened since thank goodness.
*I’m gonna make comments as the video progresses, sorry if it seems disjointed* I had a doctor tell me the same thing about not having EDS cause of my stretchy skin. I Constantly walk around with joints popped out of place, simply because I’ve learned that I’m usually the only one who cares if I shouldn’t be moving, just went to my cardiologist with both hips popped out of place and Very drugged up on my pain meds cause if I didn’t go to that appointment they wouldn’t renew my beta blockers. I’ve probably got a brace for every joint at this point. I can’t how many times doctors thought I was faking or that PT would make me instantly feel better, except the last time I went to PT I was crying during it and then I’d go home and couldn’t move cause the pain was so bad, massages do help though especially since my ribs and sternum are Constantly out of place. I definitely feel extremely lucky I haven’t progressed to the point of possibly needing a feeding tube yet. Most days I should definitely be using some kind of mobility tool, but because so many people like to call people out about “not needing” certain mobility tools I’m usually to scared to use one, even a cane, so I either just stay home or I suffer through the pain and limp around, lean on my friends, or if I’m going to the grocery store I lean on the cart. My mom and I asked for several times my biological fathers side if they had anything (especially EDS when it was first suggested at age 12) and my grandmother on that side lied until I was officially diagnosed at like 19, then come to find out my aunt (who died back in 2019 from complications of Cardiovascular EDS), my uncle, my biological father, my biological cousin, and three of my five half brothers all have EDS of varying types. I started experiencing symptoms badly at 9 even though I definitely had symptoms earlier, and didn’t get officially diagnosed till I was 19/20. People with cardiovascular EDS (like me) will usually have some cardiac event by age 40 with the median age of life being 48 (my aunt was 45ish when she died due to it). I’ve definitely started getting worse and have been warned that I might slowly lose the ability to move the way I can currently and I might eventually end up having to use some mobility aids wether I want to or not.
I kinda fit the myth that eds is easy to diganosis cause i got diganose at the age of 3 years old but only beacuse all my siblings and my mum have CEDS . but I know that I'm the rarity in ths and most people in the EDS commuinty get dignosis a lot later in life
MY FRIEND WHO HAD EDS JUST PASSED AWAY NOT LONG AGO. IT IS TERMINAL, SHE WENT THROUGH 5 STAGES OF IT BEFORE IT TOOK HER LIFE. I MISS HER VERY MUCH :( WISH THERE WAS A CURE FOR IT. MY THOUGHTS ARE WITH THOSE WHO HAVE EDS.
Have you ever had constant nausea without throwing up and if so was there anything you did to get rid of it? I was diagnosed with fibromyalgia 25 years ago and I am in pain everyday. I have had constant nausea everyday all day for over a year!! It is terrible. I haven’t considered EDS because when I look at the symptoms they don’t mention pain much and I don’t have that really stretchy skin. I was recently diagnosed with pots. My elbows look double jointed. When I got diagnosed with pots they just checked to see if my thumb bent back to my wrist so I wasn’t diagnosed with it. I have very bad dry eye and mouth also so they gave me an ANA test for sjogrens and it came back negative so they said I didn’t have that. 50 percent of people who have it do not have a positive ANA. At this point I really don’t know if I have one or a combination of these diseases because they are all so hard to diagnose and it is so frustrating going to doctor after doctor and getting nowhere. All I know is I have been suffering for 25 years and it has been much worst this last year. I have been so depressed and so tired of living with pain, fatigue and nausea any many more symptoms. I have wanted to end my life because I just can’t take it anymore. I am sorry to go on and on but I am just so frustrated and mentally exhausted trying to figure this out on my own because the doctors really don’t care and put you on a bunch of medications that don’t work. I am hoping this doctor that diagnosed me with pots can help me. If you have had the nausea and have found anything that will help please let me know. My gastro dr has been no help and I have tried everything and nothing has worked.
Hey hun! I’d definitely suggest looking into other doctors, especially if the ones you have currently aren’t helping. I’d definitely look into getting tested for EDS. EDS can be Very painful. Nausea can be a factor too, mine actually started off with being extremely nauseous Constantly, with headaches. I’ve been on two different meds for my nausea for years, one is promethazine and the other is ondansetron disolveables for when I can’t swallow due to gagging. I didn’t have stretchy skin at all, maybe just slightly stretchy but not enough for some doctors. Definitely look into getting some different doctors. I hope this helps a bit!
@@AponiTheWolf thank you so much for replying. I have tried both of those. They do not help me at all.I have heard they help a lot of people. I don’t understand why nothing is working for me. Hope you continue to get better.
@@likesandsthroughthehourgla2197 one more natural way is hibiscus tea, it supposedly helps a lot, personally I can’t stand the taste. There’s a different “parent” drug of promethazine that’s called phenergan, technically they’re the same thing but phenergan is the parent drug thus it doesn’t have some of the other stuff that promethazine has in it. It’s definitely harder to get now and usually it only comes in liquids, it’s basically what the hospital gives you when you come in for extreme nausea threw an IV. If you feel like you have an excess of stomach acid you could try eating like regular lays potato chips, cause the salt helps kinda neutralize the stomach acid and the chip itself kinda soaks it. I’d also suggest maybe trying suppository nausea meds, cause the reason the others might be ineffective is because you’re having to swallow them/they’re having to pass through your stomach and your body is incapable of digesting them like that.
My daughter has just been diagnosed. She has had nausea for years. She was sent to a neurologist and it was migraines causing her nausea (but they were so severe she didn’t feel like she even had a headache). She also gets dizzy spells when she goes “beyond” the normal migraine stage. If you get migraines at times perhaps try a neurologist. Good luck in your search, don’t ever give up. My daughters life has changed since being diagnosed so it’s worth persevering.
nausea is definately the worst part, im not a medical professional but ginger helps me and acupressure sea bands on my wrists, also iberogast it is herbal but proven to work and recommended by gastros
15 years with scoliosis. 3 years with chronic gi problems and urinary incontinence. a lifetime of pain, broken/dislocated bones, bruising, extreme fatigue, etc. No matter what i said no one took me seriously. Yet a random youtube video on adhd and eds diagnosed me perfectly. Now i have an appointment booked. I dont know if i should be relieved at finally knowing or angry at everyone who didnt take my pain seriously for 21 years
It’s always so refreshing seeing someone talk about this! Eds has changed my life the older I’ve got I can no longer work, thankfully I’ve had two healthy children but I can now no longer carry children had plates and screws to hold my pelvis and hip together
So I have been diagnosed with fibromyalgia, but I have had friends suggest hEDS to me and honestly I have so many comorbidies that occur with EDS that I am suspect that I may have it. I am almost in tears finding out that stretchy skin isn't always a factor! I had wondered for the longest time! I'm going to bring it up with my new gp
Literally same exact situation honestly! Wish you the best in finding answers!
Thanks for clearing this up! I have EDS as well, and I have been told my conditions are a myth, and I love seeing people who understand. 🙃
Also, I was at a dentist, and because of EDS, Novocaine does not work. When my parents told the dentist that, he laughed and went on using it. 🦓 🦓
Stay strong!
Thank you for watching :) Sorry you've been told your conditions are a myth - it seems to be such a common experience for people with EDS. I've also heard about things like that not working for EDS patients - there definitely needs to be more education for medical professionals doesn't there x
They don’t use Novocaine, which is what they told me, lol. I was just like, well, whatever you use, prepare a bucket of it, because that’s what it will take
Ah, dentists!
Whoa! I was recently diagnosed with EDS and have always struggled with novocaine at the dentist. Had no idea it's connected to EDS.
I had to have a toenail removed and I let them know that I have EDS at the hospital and they numbed my toe really good
This is so helpful! I love your video, and appreciated everything you said. I just got diagnosed with eds and it's overwhelming, but I'm excited to find other people and have resources to share with my friends and family! Thank you, thank you, thank you!!! 🥰
Thank you for making this video. A few descriptors for me: My EDS presents as joint pain. My skin is velvety. I have to walk with a cane when I don't get cortisone shots. I know my symptoms have continued to get worse. I don't have dislocations. I'm lucky in that, but have recently started subluxing in my chest plate. Thank you for the reminder that I'm not alone.
I loved this. I also have hEDS and POTS as well as being a liver transplant recipient due to my urea cycle disorder. These disorders need more awareness and youre doing the good work 😘
Also just wanted to ask. If it makes you uncomfortable dont answer. I have very mobile ribs and they move in and out very easily. Is this a common thing with EDS?
Thank you for your comment. I'm so sorry for the late reply - I've been struggling to keep on top of things with my health not being great, but hopefully I'm gradually getting there! I'm so glad you liked my video - thank you for watching! Mobile ribs are definitely a common thing in EDS - I know a lot of people whose ribs dislocate or sublux because they move around so much. Not much fun as it can be very painful (as I'm sure you'll know!) xx
I was told by my rheumatiod doctor that I have eds. Hypermobile. I'm 53 . And I am happy that finally I have an answer. Honestly years of weird deep aches, irritable bowels, joint pain, diagnose with raynouds syndrome, fibromalga...so much, wondering why I hurt...now finally all those added up. It is amazing that it took so long to get here but now I can educate myself and doctor and I can have a plan or plans rather to a healthier and hopefully joint stable practices. Take care ❤
I’m so glad you’ve finally got a diagnosis. It’s awful having to wait so long and spend all that time worrying and wondering about what’s wrong. But I’m glad you now at least have an answer and can work on learning to cope with and manage your EDS xx
Thank you for posting this, Jenny xxxxxxx
Thank you for watching :) xx
My daughter has had problems since birth. She also has epilepsy and her doctors just focussed on her seizures. She has just been diagnosed with hypermobile EDS and we have many answers to so many random problems throughout her life. She was diagnosed with EDS a month ago and has just had her 38th birthday two weeks ago. The only reason they looked further is because she has been in a wheelchair for the last six months for ‘no apparent reason’ other than she could no longer walk due to pain.
Ive just been diagnosed after 60 yrs , abs fuming is not the word ....living a life of hell being shunned ,sneered ,even laughed at , just no words 4 days prior to my 60th Birthday
Oh, Debby! I so understand. Decades of going to the doctor being dismissed, condescended to, being "to young" to have pain "like that" to now being told "at your age" you need to expect some pain. I still experience moments of red hot raging anger because of the way scores of doctors treated me, my loss of career, holidays I couldn't participate in, but mostly now I am grateful to have a diagnosis, a treatment plan, a support team and the understanding and knowledge to live my best life moving forward. The best thing I have done so far is weight training with an incredibly capable personal trainer. I have found him to be better than any of the physiotherapists I have had over the years; my balance has improved, some joints subluxate less and I can confidently do activities I have avoided for years (stairs in particular). Good luckto you! I'd send you a big hug but my shoulder is wanting to subluxate at the moment...
I'm 45 and have an appointment on Thursday to request a referral for a Heds diagnosis. I fully understand your anger. Throughout my life I've had pain starting at only 6 when I had to give up gymnastics due to the pain. Over the years I saw the doctor quite regularly and at one point told him that it felt like my hip was dislocating when I fell over so many times, he laughed at me. Told me it definitely wasn't dislocating but did refer me to an orthopaedic surgeon. I had 2 exploratory surgeries on my knees under the age of 18. I was told my knee would need replacing due to damage of the patella but at that point was told I was far too young... At 27 I had open surgery for a labral tear, at 31 gallbladder removal, in the last 2 years they've found a sliding hiatus hernia and a schatzki ring... I've had palpitations, headaches, fainting spells, dizziness, nausea, bloating, constipation, bladder retention but worst of all for me... PAIN. Almost every joint has pain but the worst affected are my shoulders, hips, the base of my spine, wrists, fingers and knees. I scored 7 on the beighton test. I became suicidal when my new doctor said she thought I had fibromyalgia and I'm sure without my husband and son's I would have ended my life then. I'm tired of not being listened to, of having a smorgasbord of symptoms that on their own gets ignored but when put together clearly shouts Heds. I am now armed with the knowledge that my cousin has just received a Heds diagnosis via a private doctor. I have requested a completely new doctor and have high hopes of just being listened to for a change. I'm hoping it doesn't take another 15 years to be diagnosed as it did for you.
@@Hollyisthedog Should be enough to diagnose you Holly you have papules on the inside yr ankle ?? That just sounds like me , "Exactly like me" with Gymnastics n dancing ,Swimming Netball thats what kept me going i was exhausted after ever session to the stage i dropped there are actually no words can express how mad i am n i know what you mean about the kids keeping you going just prayed 50 yrs for a brighter day it is hell on earth still to this day, i had gallbladder moved to at early age, i have Hiatus Hernia , Stomach Hernia endless stuff that i can reel off honestly ,i really feel for u ,most drs have never heard if it x
You don't have to have dislocation's u can get sub laxations where they stick ,thats what i've had all my life still to this day n very painful
@@debbyhateley6747 I have small whitish ball things on my heels (yes that is the medical term for them!) They don't hurt but I saw a video from Izzy Kornblau (sorry if I spelt that wrong) that said they are also indicative of Eds. I chose a doctor who is fairly newly qualified in the hopes that she isn't arrogant enough yet to discount everything I say! Hoping I made the right choice but if she doesn't work out I'll try someone else til I get the answers I need. It's been 40 years and enough is enough. And it's subluxation that I'm struggling with, I dislocated my big toe once but that was accidental and although it hurt I swear the constant subluxations feel so much worse cos they're constant, every morning I'm having to crack my hips and shoulders back into place to get some pain relief, I don't know what maneuver I need to do to get the base of my spine back in place though and it's that that keeps me bedbound at times. There are so many little symptoms that it's impossible to name them all! I know EXACTLY how you feel too!
I am so glad I have found your videos! I haven’t watched them all as yet but am planning to.
I am waiting to be officially diagnosed at the moment and was told about EDS by chance, I had a laparoscopy to have a look if any cause of pain could be found and the doctor that did the surgery diagnosed me before the surgery. He’d seen multiple patients with similar symptoms and was doing research into it. It was a lucky coincidence, otherwise I’d still be trying to find answers. I’m having lots of problems with my GP though who just doesn’t understand what I’m going through. I’d appreciate if I could ask you some questions and get your (or anyone else’s) advice.
I’m actually in tears writing this as it feels like I finally have people who understand xx
I have EDS and I thank you for clearing things up!!! Oh my goodness that’s crazy: EDS IS VERY PAINFUL, for people to think that about it , My neurologist’s PA said that “ oh it means that you are flexible “ Um, no it causes me pain and other complications, too! I have Classical EDS, I am Hypermobile in my hands and my neck( I can turn my neck around like a 🦉). I have stretchy skin on my hands, under my eyes and some on my neck. I wish everyone would read upon this so they can be educated and learn facts versus myths.
Sorry for the late reply - I haven’t been able to post/film for quite a while due to health. Thank you I’m glad you found it helpful. Yes it’s a shame that not everyone understands how painful EDS can be. There definitely needs to be a lot more education amongst medical professionals xx
@@JennyCole1988 you can say that again! It’s terrible that people want to ASSUME too much! Hopefully your doing somewhat well today.
This is a fantastic description of EDS. Thank you for sharing it. I've been misdiagnosed since I was 4 years old, I'm still undiagnosed with EDS but I know I have either hsd or EDS. I just need a specialist who knows the criteria to see me. I believe I may have hEDS but my skin is stretchier & my skin is scarred everywhere, to the point I thought that was why a zebra was the mascot of EDS🤦🏽♀️you're video brings so much awareness to it. Thank you. ❤️🦓
Its a born condition ,you dont develop it ,you were born with it x
Went to college for Biomedical engineering and Biological sciences, but wasn't able to graduate due to my variety of symptoms. My education led me to seek out a geneticist after almost 11 years of pain. (25years old now, hypermobility since a child) I'm awaiting results for classical EDS or hEDS. Thank you for this video! Information is scarce on this disease (in depth) I'm finding.
What genes are they testing for hEDS? I'm trying to get testing too. It's been an uphill battle.
Hello. I have come across your profile today. Your videos are extremely informative and helpful. And you seem so lovely. I will definitely be watching all videos you make and I have subscribed. I was wondering if you could do a video on pip. I am struggling to want to do a claim because people say it’s too difficult to pass. I am however running out of money. And I’m deeply ashamed to ask for help x
I mentioned someone asking me if I had it to my GP and she was just like, my cousin has that, and I did not realize how much sense that would make... so like, the only reason it took so long for me to be diagnosed was because any time o came across it I was like "I relate but it's rare so I probably dont have it" for a few years... she went through the hEDS checklist with me (it was an over the phone appointment cuz the rona) and was like, it makes a lot of sense with a bunch of small things you've brought up and we never figured out what was going on with it. She has been my GP for over 10 years and a lot of the things on the checklist were things in my file at one point or another.
My brain still feels kinda like it can't be true cuz all I've ever heard was about the struggle to get diagnosed, even after her agreeing and my physiotherapist (who has treated the only other person with EDS to have gone through their office) also agrees that it makes way more sense cuz she had been seeing me for 5 years for a foot I ruined a tendon in by walking down the hallway of my apartment building...
I feel for you even though I'm a gene carrier for eds my oldest son had type 9 he pssed away at the age of 33 and I will be 60 this year I'm just now feeling the symptoms of eds I have broken my bones, I have stomach problems and joint pain headaches,plus blood pressure problems .
subluxations hurt so bad man. i get them all the time in my knee (only one, i had surgery on the other one years ago for multiple and frequent full dislocations). my fingers too.i think i even had a subluxation in my jaw a few weeks ago.
It took 69 years, my own research and a resident of Indian descent to finally get a diagnosis.
So sorry it took so long to get your diagnosis. That must have been an incredibly frustrating process. I can imagine it must have been quite a relief to finally have some answers xx
For me with pain its both, as I would have subluxation in my wrist or ankle and I wouldn't feel anything, but my collar bone feels like I broken my bone as I've had 2 accidents at age 7 or 9 and broke my right wrist and I've had constant problems ever since and my upper left arm I landed on it to protect my head and ended up fracturing the bone near the shoulder joint and I've had problems with that ever since too, and I was age 12 when I broke my arm.
And I've also had subluxation in my chest near my heart and needed an ambulance as had no clue what was happening, when they examined me they saw my rib slipped out of my breast bone and I sighed with relief as I knew it wasn't my heart or lung.
After that I massaged it back into place and have been extra careful and it hasn't happened since thank goodness.
People think it’s not painful when they don’t have it.
Good video
*I’m gonna make comments as the video progresses, sorry if it seems disjointed*
I had a doctor tell me the same thing about not having EDS cause of my stretchy skin. I Constantly walk around with joints popped out of place, simply because I’ve learned that I’m usually the only one who cares if I shouldn’t be moving, just went to my cardiologist with both hips popped out of place and Very drugged up on my pain meds cause if I didn’t go to that appointment they wouldn’t renew my beta blockers. I’ve probably got a brace for every joint at this point. I can’t how many times doctors thought I was faking or that PT would make me instantly feel better, except the last time I went to PT I was crying during it and then I’d go home and couldn’t move cause the pain was so bad, massages do help though especially since my ribs and sternum are Constantly out of place. I definitely feel extremely lucky I haven’t progressed to the point of possibly needing a feeding tube yet. Most days I should definitely be using some kind of mobility tool, but because so many people like to call people out about “not needing” certain mobility tools I’m usually to scared to use one, even a cane, so I either just stay home or I suffer through the pain and limp around, lean on my friends, or if I’m going to the grocery store I lean on the cart. My mom and I asked for several times my biological fathers side if they had anything (especially EDS when it was first suggested at age 12) and my grandmother on that side lied until I was officially diagnosed at like 19, then come to find out my aunt (who died back in 2019 from complications of Cardiovascular EDS), my uncle, my biological father, my biological cousin, and three of my five half brothers all have EDS of varying types. I started experiencing symptoms badly at 9 even though I definitely had symptoms earlier, and didn’t get officially diagnosed till I was 19/20. People with cardiovascular EDS (like me) will usually have some cardiac event by age 40 with the median age of life being 48 (my aunt was 45ish when she died due to it). I’ve definitely started getting worse and have been warned that I might slowly lose the ability to move the way I can currently and I might eventually end up having to use some mobility aids wether I want to or not.
💚💚💚
I kinda fit the myth that eds is easy to diganosis cause i got diganose at the age of 3 years old but only beacuse all my siblings and my mum have CEDS . but I know that I'm the rarity in ths and most people in the EDS commuinty get dignosis a lot later in life
I have a question for you.Is it normal for people who have EDS to get surgery or not?
I have Sjogren's, which makes me hypermobile, and I can twist a knee or ankle just walking up the stairs😒😆
MY FRIEND WHO HAD EDS JUST PASSED AWAY NOT LONG AGO. IT IS TERMINAL, SHE WENT THROUGH 5 STAGES OF IT BEFORE IT TOOK HER LIFE. I MISS HER VERY MUCH :( WISH THERE WAS A CURE FOR IT. MY THOUGHTS ARE WITH THOSE WHO HAVE EDS.
EDS is not terminal.
EDS is not a terminal diagnosis, not at all. I'm sorry you lost your friend.
@@Faesharlyn TYSM
Hi, which type of Eds do you have?
She said she was diagnosed with hEds (hypermobile Ehlers Danlos)
hEDS is the most prevalent type of EDS
cEDS is the second most prevalent type.
Have you ever had constant nausea without throwing up and if so was there anything you did to get rid of it? I was diagnosed with fibromyalgia 25 years ago and I am in pain everyday. I have had constant nausea everyday all day for over a year!! It is terrible. I haven’t considered EDS because when I look at the symptoms they don’t mention pain much and I don’t have that really stretchy skin. I was recently diagnosed with pots. My elbows look double jointed. When I got diagnosed with pots they just checked to see if my thumb bent back to my wrist so I wasn’t diagnosed with it. I have very bad dry eye and mouth also so they gave me an ANA test for sjogrens and it came back negative so they said I didn’t have that. 50 percent of people who have it do not have a positive ANA. At this point I really don’t know if I have one or a combination of these diseases because they are all so hard to diagnose and it is so frustrating going to doctor after doctor and getting nowhere. All I know is I have been suffering for 25 years and it has been much worst this last year. I have been so depressed and so tired of living with pain, fatigue and nausea any many more symptoms. I have wanted to end my life because I just can’t take it anymore. I am sorry to go on and on but I am just so frustrated and mentally exhausted trying to figure this out on my own because the doctors really don’t care and put you on a bunch of medications that don’t work. I am hoping this doctor that diagnosed me with pots can help me. If you have had the nausea and have found anything that will help please let me know. My gastro dr has been no help and I have tried everything and nothing has worked.
Hey hun! I’d definitely suggest looking into other doctors, especially if the ones you have currently aren’t helping. I’d definitely look into getting tested for EDS. EDS can be Very painful. Nausea can be a factor too, mine actually started off with being extremely nauseous Constantly, with headaches. I’ve been on two different meds for my nausea for years, one is promethazine and the other is ondansetron disolveables for when I can’t swallow due to gagging. I didn’t have stretchy skin at all, maybe just slightly stretchy but not enough for some doctors. Definitely look into getting some different doctors. I hope this helps a bit!
@@AponiTheWolf thank you so much for replying. I have tried both of those. They do not help me at all.I have heard they help a lot of people. I don’t understand why nothing is working for me. Hope you continue to get better.
@@likesandsthroughthehourgla2197 one more natural way is hibiscus tea, it supposedly helps a lot, personally I can’t stand the taste. There’s a different “parent” drug of promethazine that’s called phenergan, technically they’re the same thing but phenergan is the parent drug thus it doesn’t have some of the other stuff that promethazine has in it. It’s definitely harder to get now and usually it only comes in liquids, it’s basically what the hospital gives you when you come in for extreme nausea threw an IV. If you feel like you have an excess of stomach acid you could try eating like regular lays potato chips, cause the salt helps kinda neutralize the stomach acid and the chip itself kinda soaks it. I’d also suggest maybe trying suppository nausea meds, cause the reason the others might be ineffective is because you’re having to swallow them/they’re having to pass through your stomach and your body is incapable of digesting them like that.
My daughter has just been diagnosed. She has had nausea for years. She was sent to a neurologist and it was migraines causing her nausea (but they were so severe she didn’t feel like she even had a headache). She also gets dizzy spells when she goes “beyond” the normal migraine stage. If you get migraines at times perhaps try a neurologist. Good luck in your search, don’t ever give up. My daughters life has changed since being diagnosed so it’s worth persevering.
nausea is definately the worst part, im not a medical professional but ginger helps me and acupressure sea bands on my wrists, also iberogast it is herbal but proven to work and recommended by gastros
The gaslighting is strong with EDS.
And doctors cure? 🤣🤣🤣🤣 Dumb on that part.