EDS Stuff No One Talks About | Ehlers Danlos Syndrome
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- čas přidán 24. 07. 2024
- EDS Stuff No One Talks About | Ehlers Danlos Syndrome
Some of the eds things that aren't talked about much, such as fatigue, funding and bladder and bowel problems!
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⚠️ These things often go alongside hEDS, but they are not indicative of hEDS unless you also meet the ‘2017 hEDS criteria.’ See a doctor if you are concerned. ⚠️
@@GeorginasJourney I didn't know my joints dislocated.. I didn't know my joints were hypermobile lol I thought I was just flexible & my joints locked randomly that need my carer to put them back. My pain was the thing I thought stopped me moving. I was misdiagnosed with fibromyalgia & my pain has never been widespread muscular pain unless I strained that limb lol. I'm still waiting for treatment as I dislocate & sublux so often. But locally everyone is unaware of EDS & scared to treat me.
@@zeynand4039 I'm not getting treatment, I'm bedbound and have been misdiagnosed as mental illness created pain. I'm now currently waiting for a rhuematologist to refer me to an EDS specialist but we only have one NHS EDS specialist professional in the UK.
I could forgive doctors for not knowing, but when they then go on to not believe you, it’s actually the worst. Not knowing is easier to fix.
That's so true, I feel exactly the same!
I once had a doctor tell me no I don't have it and basically saying it wasn't real after being diagnosed and going through everything I saw him to see if I have scoliosis and he told me "you have two legs you use two legs. God gave you two eyes you use them too" like
I have eds and wear glasses sure I have them and use them they're just not 100% 😂
Yes, I have found that they don't want to believe your in pain because you're not crying. I actually had a Dr say that to me! Well it can't be too bad, you're not crying. Really? I thought it was a horrible thing to say to a patient.
Here is the EDS Patient's Bill of Rights, written by a fellow EDS patient - print it out and bring it to appointments:
www.chronicpainpartners.com/attention-doctors-an-eds-patients-bill-of-rights/
I think we all can relate to this.
@@elizabethvandeventer5487 I had just the opposite reaction. At the pain center, I saw different doctors and paramedics. At that time my pain was so extreme, never under 7, I couldn't sit down anymore, or standing, I was just able to lay down, (evenin the waiting room I layed on 2 or 3 chairs), and after a few minutes in a car, I was crying out of pain. When I saw the psychologist, he said that I must not cry in front of doctors because that may make them uncomfortable!!! And he was a specialist in chronic pain. I also met 3 different doctors (rheumatologist, physiotherapist..) who said that I have chronic pain, but not from the EDS because EDS doesn't cause pain. I was diagnosed at 46, 7 years ago, but a lot of symptoms were there for childhood. Here in Belgium, there are 2 specialists in Brussels, more than 100 km from my house, the first free day is in 2023. Private clinic so, very expensive.
I can't find a doctor who could see me as a whole, the exhaustion, the digestive problems (very annoying when you ggo outside) the cognitive issues, my big proprioception issues, for example I can't eat without making spots because I have a poor coordination etc... I hope you finally find help, so many doctors don't have a clue of what EDS is, they didn't ear about it during their studies.
The fatigue is so real!
Amber Barnard agreed!
It is SO BAD.
The jaw popping/clicking thing when eating 😩😩 hate it
MrsPark me too!
Yes me too! I served potato soup for dinner and I use a teaspoon to eat instead of a soup spoon and my mom laughed at me and said, "gee, doesn't it take you forever to eat a bowl of soup?" I had to remind her that I can't open my mouth that big because my jaw will pop out of place. Even she rollls her eyes at me. Uuuggghhhhh!
Kind of update, was talking to my oral surgeon and he said around 20% of the population gets the popping/clicking while eating but yet is is more common in EDS
My jaw used to dislocate and be totally stuck. I now keep my bottom jaw back, try not to slide it forward. If you yawn put your hand under your jaw to prevent it opening fully.
Yeah that happens to me but im 11 so i dont think i can get a diagnosis yet =( My jaw randomly clicks while eating, and it sometimes hurts
I can relate to a lot of these. As for the fatigue, I was at a neurologist being tested for MS and they left the room. I knew they were googling Ehlers-Danlos. When she came back in the first words out of her mouth after telling me looked up EDS was that I must be so tired all the time. She immediately connected that if it affected collagen it would cause problems everywhere, not the least being that our muscles would be exhausted trying to keep our joints in place. It was the first time a doctor recognized the depth of my fatigue and after the appointment I just sobbed in the car.
I’m glad your neurologist made you feel validated :)
Yessss! In my experience- most Doctors just straight up think it’s stretchy skin sand that’s it.
ChristinaZ Newman my experience is that they think it’s just a joint problem! They really didn’t understand how unwell it can actually make you!
Take this hEDS article explaining the systemic effects of hEDS with you to all doctor appointments:
www.ehlers-danlos.com/2017-eds-classification-non-experts/hypermobile-ehlers-danlos-syndrome-clinical-description-natural-history/
Most doctors are unaware that there are 14 different types of EDS. Classical type EDS was the first to be described in medical literature, and that one is the most known for stretchy skin. General medical studies that doctors go through at medical school might only mention this type. Another problem is that the rare EDS types with the very dramatic manifestations are the ones that get case studies published in medical journals, so it can mislead doctors into thinking that all EDS cases should present like that.
Doctors thinking that EDS only affects joints is silly. EDS is a mutation affecting all collagen in the body. Since the body uses collagen to make pretty much everything that isn't bone - joints, skin, blood vessels, the entire digestive tract, eyes, every internal organ, etc. - EDS can have systemic affects on the entire body.
I think chronic pain and fatigue is very common in EDS. I think we just deal with is and not talk about it that much because it's just our lives and what were used to.
I also don't think a lot of doctors are able to connect the dots with EDS comorbidities even if they're aware.
Lloyd is Learning I agree with all of that!
More doctors need to read this article summarizing the systemic effects of hEDS:
www.ehlers-danlos.com/2017-eds-classification-non-experts/hypermobile-ehlers-danlos-syndrome-clinical-description-natural-history/
Wow... EDS really involves a lot of body functions... thank you for sharing this information !
Babies By the Shore it really does! You’re welcome!
I bump into things so often that I don’t notice until someone asks if I’m okay
Or they say, Omgosh! What is that bruise from?!?!? Uhm I am not sure, maybe from getting out of bed? Or bump on garbage can or car door? Maybe carrying grandson and his shoes caught me? I can just tip over sometimes? They oogle at me. 🤷🏼♀️
Thankyou for sharing this information. So many Drs are ignorant about EDS , it is very frustrating & sad. Pain control is so important, we need to stay as active as possible 🤗
You're welcome :) I agree, I wish doctors understood it better
poor proprioception, defo. Getting through a door instead of walking into the door frame is a win! I am forever getting a hood or sleeve stuck in door handles. and tripping over like edges of carpet or tiles anything. I can put my back out going to the toilet! Sprain a wrist picking up a cup of tea
Billie's Craft Room yes to all of these! Me too!
Omg I’m forever running into door frames, too 😅 also the amount of times I’ve popped a rib or a vertebrae just sitting down on the toilet omg I thought I was the only one.
I’m glad you brought up the bowel problems! I’m soon to be tested for EDS. I’ve had to do enemas every other day for years. Everything works fine until the very end. Just doesn’t come out. Everything just backs up from a certain point. I’ve gone to mayo clinic with the best docs and they haven’t got a clue. This totally makes sense now!
Kathy Nicklas it’s honesty so common with EDS! And if it makes you feel less alone with all of this...I can relate 🙈
Have they tried you on Mestinon yet?:
www.digestivedistress.com/novel-rx
www.ehlers-danlos.com/2017-eds-classification-non-experts/gastrointestinal-involvement-ehlers-danlos-syndromes/
That discripiton is so relatable!☺ I'll sit there feel like I'm finally going then it just stops... I was going to go for an endoscopy 😣 but I doubt they will find anything (that seems to be eds life + no one wants to be rushing to a hospital right now) hoping you find something to ease your situation and are staying safe in this difficult time. 💜
Yes,omg EDS effects so much,we are warriors,thats for sure!!
Fellow fatigue club member right here :)
Winter Esther Bonebakker it seems to be quite a big club now!
I am in my forties and listening to you while crying my eyeshot here. For the first time someone talks about the symptoms I have lived with for soooo long and always been told that it was psychological. Thank you!
This video is of things that go alongside EDS, but they are not diagnostic themselves (as the criteria for EDS is very different). But I really hope you can get some answers & some help soon, it would be helpful to look up the 2017 hEDS criteria to see if this is something you should look into more & discuss with your doctor
Just came across your comment again, are you doing any better?
Wow! Thanks for making these videos!! My daughter is 14 and was just diagnosed with EDS a few weeks ago…. My daughter is always cold!!! We live in Florida and traveled to Mexico last week…. She had a huge jacket on while we were laying out in the sun on the beach! I was just floored! She is always tired, hands cramp up when she writes, chronic subluxations and dislocations… 12 dislocations in her right shoulder in 2 months. She just started PT but had a delay from all the dizziness and headaches and a few falls. The salt tablets and zofran seem to be helping so hopefully she can resume her PT. We live in the states and it’s very hard to get funding and testing here as well so I’m sure we won’t go the genetic testing route…. I can clearly see she has EDS anyways!!! I just hope her shoulder heals up! I keep taping her shoulder and she has a special brace but still that shoulder keeps popping out! Have you ever had the injections that help the joints strengthen? Prolotherapy? I think that’s where we are headed next?!?!? Not sure! This is so new to us and kind of overwhelming. Any advice is greatly appreciated and I appreciate your videos as well!!! It’s helping me learn so much!! Thank you!!
Hi Kara! So sorry to hear that your daughter is struggling so much! I really struggle with my shoulders too (they’re actually one of the weakest joins in general, so it’s common for people with EDS to struggle with it), I really hope you can find something that helps her, whether that’s injections, surgery or some sort of brace.
Definitely let her school know about her hands if she’s at school, maybe they can accommodate by letting her use a laptop?
And with temperature dis-regulation, lots of layers are the way to go do that she can add or remove them as needed
Lastly, zofran is amazing, but often needs to be taken with a stool softener if used regularly, so that may be something to look into if you find she’s getting stomach cramps!
I have hypermobility spectrum disorder (getting testing for EDS soon though) and experience almost all these. Its so nice to hear about this stuff from someone I can relate to. I have pretty significant fatigue problems but was told it wasn't ME/CFS since I don't get the post exterional malaise severely.
Hi! I have a video all about HSD that you might find helpful in case it is HSD, as HSD can be a pretty severe condition, but there’s not a whole lot of information on it online (see below)
What is Hypermobility Spectrum Disorder & How Can it Affect People?
czcams.com/video/H8O-kRvnJvw/video.html
Thank you so much for talking about these problems! I’m from the Netherlands and I did get genetic testing, but just the basics and not the entire panel. I also suffer from extreme fatigue, have bladder problems, I’m getting surgery in just over a week for the placement of an ileostomy because my bowel is so badly effected. There are also barely any doctors that know about POTS, Dysautonomia, MCAS and more and there are only 2 rehab doctors that specialise in EDS in the entire country…
I also think that stomach problems are not talked about enough (I have quite severe Gastroparesis) there is also just one hospital and 2 doctors in the Netherlands that specialises in stomach and bowel dysmotility….
Hope your ileostomy surgery goes well! And if you join the chronic illness community on Instagram and watch videos from youtubers who have EDS, you’ll see that stomach problems such as gastroparesis are actually talked about a lot :)
When I told my new family doctor i had EDS he said "oh that means you're bendy, doesn't it?"!! I have everything you mentioned (except for full dislocations, I sublux) and more, it's crazy.
EDS UK is a brilliant support group, and I think there's a similar one in America too. Keep up the good work and take care of yourself. Best wishes
❤️🩹❤️🩹
My catchphrase is “I’m so tired” 😂
Super helpful, thank you so much Georgina. Your knowledge is helping so many of us!
Glad it was helpful!
Thank you for talking about all of this. I hope you're doing well during all of this. I hope you're at a manageable state.
Thank you!
I loved this video, it was so honest. Sometimes it's nice to hear your own experiences validated, even if I wish others didn't have to experience this pain in the first place!
Agreed! I hate that others are going through it, but it’s nice not to feel so alone!
Very informative video. Keep up the good work. You're such inspiration to so many people.
Ry theGuy thank you so much!
Excellent video! And I can relate to ALL that you bring up- I want to comment more when I’m more awake.
kat kaplan thank you! Hope you’re able to get some sleep 💕
Found your channel and thank you so much for these videos. I just found out I wasnt emptying my bladder and have to use catheters 4x a day. I only found out last year I had hEDS but I have crossover symptoms of multiple other types. Channels like yours and izzy's have helped me advocate more for myself and understand what's happening to my body more ❤
You're welcome! I hope you're as okay as you can be today
OMG thank you for sharing this. It brought tears to my eyes knowing all my strange and seemingly random symptoms are actually caused by the same thing! I have a diagnosis of hypermobility syndrome and waiting to see an EDS specialist
This video can’t be used to diagnose as none of the things I talked about are diagnostic of EDS, but I hope you get some answers soon
Hoping that the EDS specialist can give you the official diagnosis, but I'm glad that one of your doctors put a Hypermobility Spectrum Disorder diagnosis there as a placeholder until then! It was a relief when I got my hEDS diagnosis, for the same reason you mentioned. A unifying diagnosis to tie all of my health issues together was very comforting, and made me feel like I was less messed up than I thought I was. Rather than having a laundry list of all of these things that were wrong with me, it was all tidied up into a single package diagnosis. My healthcare seemed much easier for the doctors to do as well, since they could finally understand the cause of all of my health issues.
Great video lovely. I can relate to the genetic testing thing. I have symptoms/signs of Marfans and some symptoms related to other types of EDS, but because I fit the hEDS criteria I haven't been offered genetic testing. I can also massively relate to the fatigue. I was originally diagnosed with M.E, but now with other diagnoses I'm not sure if the fatigue is caused by them or if it's still M.E. But it's one of my most debilitating symptoms. Can relate to everything you've said - bowel and bladder problems are so poorly understood by a lot of doctors, which is such a shame. And there definitely needs to be better education generally - EDS UK do a lot of work on this and created a toolkit for GP's recently. But need consultants/hospital doctors etc to have the knowledge too xx
Jenny Cole thank you! Sounds like we experienced some pretty similar symptoms and situations! That GP toolkit sounds amazing! I’ve wanted to give talks to people in the medical profession for ages so that I can make just a few people more aware and better equipped to help people with EDS (and also invisible illnesses in general), but I have no idea how I’d get into that & I doubt I’d be well enough to do it it professionally anyway :/ It’s just something I’ve thought about a lot xxx
Thank you for this . I have this ... so me . My ribs are my worst and my SI joint . And when u can’t put them back it’s frustrating. I also haven’t been tested too . Thank you for sharing the issues you had with Pilates and physical therapy.
So sorry I missed this! Are you doing any better? SI issues are so debilitating, aren’t they! One of my worst ones also! The rib ones can really niggle away at you badly too so I know what you mean!
Besides hypermobility, my first major symptom that started my journey going to the doctor to find out what was wrong was nocturia (overactive bladder at night). It took 7 years, countless tests and urologists, physical therapy, and so many medications before I found something that reduced symptoms. To this day my urologists tell me it’s all in my head. Luckily I was able to get my EDS diagnosis in 2022, so I’ll once again be on the search for a urologist who is familiar with EDS and knows how to work with me.
Glad you’ve been diagnosed now, Emily! Urologists should be treating their patients symptoms even if they dont know the cause of them, so I’m really sorry your past urologists were so dismissive, that really sucks
Great video and yes i deal with many of these different things like fatigue , temperature issues and many of the other things . I wish doctors had better knowledge
Thank you!
@@GeorginasJourney your welcome
Has anybody noticed more and more symptoms the older you get?
I’m 15 and I don’t really have the experience obviously but I’ve heard that for some people it can be progressive.
It can if the health issues of EDS aren't properly addressed. Pain management and physical therapy or exercise to build and maintain muscle mass are key. I went through a period of time where I was sedentary, my pain went unchecked, and my muscles atrophied - that resulted it putting me into a bedridden state.
Thankfully I was able to get pain managed with low doses of opioids, got put into physical therapy and developed an exercise plan to build muscle, lost 100 pounds, and turned things around. This reversed the progression of my hEDS.
I have, I used to just have vomiting, fainting and fatigue. Now I also have joint dislocations and subluxations, a partially paralysed bladder, nerve pain and chronic pain.
@@pocketluna3607 i am 64 it gets real bad over time
Has anybody noticed that their body wears down more as they age? Yes.
I watched a gmvt interview and decided to mention it to my GP. He initially laughed at me, although in good nature he advised me not to watch daytime TV... a bit embarrassed, i explained why I had thought it might be eds. I said "no harm in asking i suppose" 😂 I came home and found Izzy's channel then I was convinced so decided to ask again on my next visit. I got a call from them the next day to go back for another appointment. Thankfully after I left, he read up realised I was actually on to something and wrote a referral. I'm really very greatfull for you sharing your knowledge. There is so little information available, hearing about a lived experience is really, so very helpful to know and understand myself and I'm sure it will help many more people too. Thank You 💜 Hope You're able to stay safe in the current situation 💗
Hope you get some answers soon, keep me updated if you can! And I’m so glad you’re finding mine and Izzy’s videos helpful!
I have been sick for many months and condition is undiagnosed or misdiagnosed I have weird symptoms and after using alot different medications caused me new symptoms and they are undiagnosed. My life devastated by my illness. lost job lost friends lost money almost losing everything slowly. After watching your videos it gave me so much emotional energy keep making these videos Really appreciate you ✌️
asad javaid I went through all of that too for years, but eventually things got a bit better, so don’t lose hope! 💕
I have terrible fatigue all the time! I also have bladder and bowel issues and stomach issues! They aren't talked about often, your right! I'd love to know why it's so disabling!
Sorry you deal with all of that too! It can definitely be challenging!
@@GeorginasJourney thank you!
THANK YOU, for making all of these videos! It is so hard to talk about. I have EDS and ME and Fibromyalgia, most likely POTS and MSAD. But off course, in the north of Sweden where I live no doctor knows what POTS and MSAD is,and it is impossible to get a doctor to check. I also have Asthma, a broken bladder, Migraines, severe allergic issues despite medecines. And so much more body issues. I stop breathing every time I sleep. I could go on and on for a long time. My body temperature is crazy every day. I get very high fever, or more common on a regular basis, too low body temperature. I get episodes where it is 28 degrees in my bedroom, I have a wool sweater on, pants, a night dress, wristwarmers in wool, socks in wool and a wool blanket, despite of all that I am crazy ice cold and only have a 34 degrees temperature! !
Disascraftwork I have dysautonomia and go through the exact same thing in terms of temperature disregulation, that is likely what’s causing it! Im not on any medications for the temperature aspect and it’s more about managing it as best as you can, with whatever you can :) I often spend some days of the summer wrapped in blankets haha
You have sleep apnea from the excess skin in the back of your throat, which causes you to stop breathing in your sleep? My sister and I have hEDS and got the corrective surgery which removes that extra skin, the uvula, adenoids, and tonsils. It's made an amazing difference for us!
Have they tried you on Clonidine or Guanfacine to treat your POTS and migraines? Either of those work great, and prevent the norepinephrine surges which cause the dysautonomia and anxiety that EDS is known for. EDS people and people who have MCAS are much less likely to have bad reactions to these than other medications that they try to give us.
Another miracle drug for EDS patients is Mestinon, which treats POTS, gastroparesis, and chronic fatigue.
@@Dulcimerist Thank you so much for writing this!! I had no idea. And it feels really good to know these things you told me. Unfortunately I really do get NO HELP here in the north of Sweden. If I go to a doctor, I get treated very badly and they basically call me crazy, despite the fact that they can read all about my diagnoses from several doctors. I go home crying, without any kind of help.
@@Disascraftwork Rule #1 for people like us who have chronic medical conditions - Never go to doctor appointments alone. Always bring a friend or family member who is very familiar with your health issues, who can take notes and stick up for you and ensure that the doctor doesn't brush you off. Insist on audio recording your appointments. As a last resort: If you have a physical medical condition that you need treated and the doctor refuses to treat it, insist that they put in writing that they're refusing to treat your condition. You can say it's to establish documentation for their legal liability for refusing to provide medical care.
@@Disascraftwork Also, just a heads up that many doctors will see fibromyalgia in a patient's medical record and immediately believe that all of that patient's issues are "functional" which means psychogenic or "all in your head". By the way you've described your backwoods, small town, country doctors who probably take chickens and turnips as payment for their services, they likely fall into this category of bias against fibromyalgia. Fibromyalgia is a legitimate, physical medical condition, but it still carries a stigma. I experienced this for two decades while I had a misdiagnosis of fibromyalgia. I experienced the exact same horrible issues with doctors that you've described. (That's what has prompted me to write so much to you - I know exactly what you're going through, and it hurts to see someone else experience these things.) After I was diagnosed with EDS, EDS became the differential diagnosis which explained all of my pain, fatigue, and other issues. My EDS had been misdiagnosed as fibromyalgia, so then fibromyalgia was removed from my records as a diagnosis. The attitudes and performance of all doctors abruptly changed for the better after that, and I was finally able to be taken seriously and receive proper medical care. Although I don't want to question your fibromyalgia diagnosis, I do wonder if it would be worth discussing with the doctor who diagnosed your EDS. Technically, an EDS diagnosis is a disqualifying differential diagnosis in meeting the fibromyalgia diagnostic criteria. If you're facing medical bias because of the fibromyalgia diagnosis, getting it removed might unlock the door for better healthcare for you. I can really empathise with the frustration you're feeling with the doctors ignoring and refusing to treat your physical and very real medical conditions.
i dont have EDS, I've been diagnosed with fibromyalgia, but I relate to all of these other than the dislocations! the bowel/bladder stuff is totally something that took me a long time to realise was affecting me so badly.
ratprince definitely see your doctor about it if you haven’t already, there are things they can do to make it a bit better 💕
@@GeorginasJourney Thank you. I have talked about bowel stuff and I have an IBS diagnosis too, but I think I need to emphasise how consistent my bladder problems are.
Have they screened you for hEDS? They updated the diagnostic criteria in 2017, so you no longer need to have dislocations to be diagnosed - chronic, widespread pain will suffice to meet that requirement:
www.ehlers-danlos.com/heds-diagnostic-checklist/
I carried a fibromyalgia misdiagnosis for a couple of decades, until doctors finally figured out that I have hEDS.
I have hEDS and suffered severe fatigue. I was also diagnosed with Vitamin B12 deficiency. With that corrected my fatigue is much improved.
I’m so glad you’re doing a bit better now 😊 I have low b12, low iron & severe folate deficiency but really struggling to improve the severe folate deficiency as folic acid makes me really sick 😅
It's the same where I am in Canada. If you meet the criteria for HEDS, unless you have multiple hernias or prolapses, aortic root dilation, mitral valve prolapse, or extremely fragile skin, they won't accept your referral for genetic testing.
Hiya my mum's.suspecting I have EDS and watching your videos has helped us want a diagnosis, I also have tourettes which is rlly hard especially the other day it threw me to the floor and all I did was land not even that hard on my knee and it completely subluxed and we went to hospital and the amount of time my pelvis subluxed is unreal
Hope you’re able to get some answers about what’s causing it! Getting a referral to a rheumatologist would be a good place to start!
i could relate to all of these. i took baseball practice when I was 7 years old and it was terrible. I couldn't catch the ball and one time the ball hit me right on my head. I also have a hard time discerning right from left. Dancing or anything that requires full body movement is hard for me unless there is a mirror in front of me so that I can see how my body is moving. Otherwise I can't even make my body move the way someone like an instructor is telling me to. I dreaded gym class in high school. Relatives never understood how I passed difficult classes but failed gym. And that's because I wouldn't attend or I wouldn't want to participate. I would get embarrassed in school when I had to get up from my chair and walk because when I would get up and walk my tailbone would make a loud popping noise. Also simply just having to adjust my joints in class caused others to react. But if I didn't I would be in so much pain.
withlove_ adriana so many things in here I also relate to so much! The dancing is a huge one, completely forgot about that! And I also did well on my other classes but barely scraped a pass in PE! 😅😂
Same granted the kids in my pe class figured out quickly that they could hit me in the face with a ball and constantly did so.
Ok I cant tell my right from left and get made fun of for putting shoes on the wrong feet. Especially my kids. My 2nd son has trouble with R AND L . He makes an L with his fingers to tell.
I have horrible bladder, bowel, joint issues (so do multiple fam members) My two uncles died early bleeding and heart problems. I also have horrendous motion sickness if I dont drive.
My heart races very fast sometimes and lately I feel like passing out after meals especially during my HEAVY PERIOD.
My Aunt stayed in Dr offices for years in alot of pain with lots of joint pain, bowel issues.
My thumbs are horrible and my middle finger is crooked (swan neck).
I'm getting work up on my sons because I don't want them to suffer like my mom and Aunt.
Hi, I live in South Africa and we don't even have the genetic test here, I was officially clinically diagnosed with hEDS in March 2021 and after a lot of blood work only to be told that they can't do the genetic test in South Africa because they don't have the test here. Thank you for this because I have related to a couple of these (like temperature regulation getting overheated and sick from it. My boss jokingly says my thermostat is broken) that I also did not realize that was part of EDS. I was 4 when I was diagnosed with a "Joint issue" that I got from my dad and it was left at that I am now 39. It has been such a validation for me because I can now link all of the medical issues that I have been dealing with since then back to EDS, as the saying goes all roads lead to Rome well, all of my medical illnesses and struggles that I have had leads back to EDS.
Glad you have answers now, Margaret! I felt the same way when I got diagnosed, it explained everything :)
Hi, new here. My daughter was diagnosed with hEDS yesterday. We weren’t too sure how she got it but I just watched your video and now I think she got it from me. My jaw clicked so bad at the dentist once he looked on the floor to see what he dropped. I now have a mouth guard to keep my jaw aligned during the night, my jaw is a lot better now. But I have other symptoms too they are but much milder than my daughter’s.
Hi, glad your daughter has some answers now! Maybe, hEDS can be passed on & often the severity of it differs (& I actually know quite a few people who’s parents got diagnosed after they did). Have you heard of TMJ disorder? That’s very common with EDS and I’m wondering if it could explain your jaw problems!
Same in the US . I have bladder and bowel problems
I have been chronically fatigued and constipated my entire life. These were actually the biggest issues I had almost 2 years ago when I first found I might have EDS. I remember my mom giving me suppositories in my sleep as a kid, feeding me lots of broccoli, and giving me a warm bath all to help me. I also remember laying down and closing my eyes to imagine I was playing with my toys because I was too tired to actually play with them. My mom had me in the Dr all the time trying to figure out what was wrong with me. I was always clumsy and jokingly called Grace, even now. And I haven’t even finished the video yet. Seems that’s the way it always is for me - I relate to what you’re saying so much that I have to comment before it’s over. lol! Oh, also wanted to mention that I don’t have any other diagnoses except all GI ones, including gastroparesis, so I don’t know which is related to my chronic fatigue. I’m just finally starting my journey with my EDS diagnosis in June.
Laundrey1 I also dealt with chronic fatigue from a reasonably young age (around 9-10, I’d say), to deal with stomach problems as well as a child must have been really tough! But I’m glad your mum did what she could to help :) and good luck with your diagnosis journey!
@@GeorginasJourney yes, my mom always believed me. She’s such a huge support
@@Laundrey1 I’m so happy to hear that! ☺️
Have they tried you on Mestinon to treat your constipation/gastroparesis and fatigue yet?
www.digestivedistress.com/novel-rx
www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/
The pain makes me so sleepy! I hate it in always tired and needing to sit or lay down
are you sure it's from pain? I'm very fatigued and always have to lay down or sit down too, although it doesn't seem to be caused by pain for me, it's the case whether I'm in pain or not
ive been diagnosed with fibromyalgia and autism, but ive been looking into eds recently. i have nearly all of the symptoms but the dislocations and i plan to getting to the doctor asap to see a rheumatologist because my pain has only been increasing and ive always had undiagnosed gi issues which are only worsening . i take cymbalta for the pain, which helps with my joint pain, but the muscle pain is still there, and my daily pain is in the 5-7 range. doctors r blown away by my pain level everytime they ask because im so used to being in constant pain. i also have quite atrophied muscles and i struggle with getting exercise without hurting myself, throwing up, or being in pain too extreme for me to manage alone.
i also have chronic hiccups for no reason that my doctor can figure out!
Hope you can get more answers soon! I also have chronic hiccups, which I talked about in an old video, but I have never had it diagnosed as anything
Wow, I did not know this, very helpful information. I hope you are doing ok. I am sorry I have not been around.
Doctor Death. Thank you! And no need to apologise :)
@@GeorginasJourney you are welcome and how are you doing in school.
Doctor Death. I’m doing very well in school, thank you
Omg! I haven’t been diagnosed, but I’m almost 100% sure I have EDS, MCAS, pots etc....my hands/feet/fave have been flushing when I eat or drink alcohol for about 5 yrs and my doctor recommended a low histamine diet, which has worked. In researching the diet, I found out that MCAS & pots is almost hand in hand with histamine intolerance. I also recently saw another video on CZcams about EDS and MCAS being related, and I have almost everything your talking about. Since a young age I had stomach problems, brain fog, hard time falling asleep, sleeping through alarms, used to sleep 12 hrs/day in middle/high school. And now it’s all making sense! I truly believe the root cause is EDH and genetic issues...but unfortunately over the years, so many other things have come into play. My shoulders pop out constantly and hurt, I can’t sleep on my sides anymore, and the first time it happened was in 6th grade. I have hypermobility in my thumb, arms etc., my knees crack every time I walk or shift weight, my shoulders also crack, my neck cracks easily, I was also afraid of losing my job because of over sleeping and messing up on stuff, and was diagnosed with ADD and take Adderall for 10+ years. Before that, I had absolutely zero energy, I was constantly tired, slept so long, tired after every meal, tired after waking in the morning, and the meds are the only things that’s helped me function, but I don’t wanna be on them forever....I also only used to poo once a WEEK before Adderall, and retained fluids, and I thought it was normal until the meds got me on a normal poo schedule. I felt so much better, but now after 10 years my body is attacking itself (MCAS) and I’m worried it’s the meds, also scared to go back to how I used to be. Anyways thank you for speaking out! NO the sleepiness and bowel issues are not uncommon! Those are the two main things that began first for me from childhood! Hopefully a genetic test will help, but even so, I hope there’s a way to help fix it or make us less tired and less bowel issues 🥺
Hope you get answers from a genetics test! Or if not, it would be great if you could get tested for hEDS under the 2017 criteria by a geneticist or a rheumatologist as there’s no genetic test for that specific type! All of those symptoms could be caused by other things, but the fact you’re also hypermobile and have joint problems makes EDS a likely cause which could could explain it all! And yes, MCAS is a common co-morbidity of EDS!
@@GeorginasJourney Thanks for clarifying some test info!!! I’m going to talk to my doctor about the EDS and testing next month
@@larinavigil5225 good luck, I hope you can get some answers soon :)
If you can look into a specialty dentist to mold a mouth guard specifically for you! It took multiple adjustments but it aligns my jaw when I sleep and now it rarely subluxes and clicks it’s amazing!!
Fiona M that sounds amazing, thanks!
I just got a tooth brace for my jaw dislocations but it actually makes it worse? And when I told them they fixed it a little bit and then told me it should work but it’s still dislocation more than without the brace :(
Has anyone else had this problem?
@@Haylee427 I don't have braces, but I found a dentist, hélas he retired 2 years ago, who grinded a few teeth so my jaws can close right. But they still get stuck in a wrong and painful position. So I went to a specialist in ATM (articulation temporo-mandibulaire. Don't know the name in English). It really helped even if my jaw joint is still unstable, but less often and not so badly.
@@murielbilly4296 thanks! I’ll look hi to that :)
I've always worn out easily. I'm always tired and can always sleep. I have hEDS and have almost all of the things you talk about in this video
Sorry you struggle with all of this too- hEDS is a really tough condition to manage 😌
@@GeorginasJourney at least it's good to hear other people experience the same things as you. Feels more comforting when doctors try to gaslight you 😅
I do hope that your videos will help to spread knowledge about EDS.
I think they already are :)
I have temperature regulation problems as well
My daughter was just diagnosed too...so it’s me, my dad and two kids..my dad has passed now, but we make up a massive list of symptoms, the most difference being my daughter, 25 never had a big weight gain but has always had mass amounts of stretch marks. Oh, but I can sure jump aboard the temp regulation, bladder incontinence, fatigue...bruising! I have dysautonomia and MCAS, Josie my daughter perhaps has MCAS, but we both had Hashimotos, lost thyroids, gallbladders, me: add uterus, ovaries, why haven’t I lost weight 🤷🏼♀️ oh well, we are the warriors.
Actually a LOT of people can't get genetic testing in the United States either because of insurance problems. You definitely are not alone in that.
Most of the time insurance refuses to pay for genetic testing because it is considered an "investigative" test. Some genetic conditions have specific medications to treat them, but for EDS you have to just treat the issues individually as they arise. So from the insurance's perspective genetic tests won't change patients' treatment and therefore it is an unnecessary expense. In some cases if one has severe vascular problems, especially if the patient is a child, insurance would be more likely to pay. But generally insurance fights you and the doctor every step of the way.
In the ideal scenario, geneticists give the tentative clinical diagnosis of hEDS and then try to obtain insurance approval. If you can't get approval you just keep the hEDS diagnosis. If you can get approval and get the testing done your diagnosis will change or remain accordingly. geneticists
My point is, social media may make it seem like lots of Americans are being tested but this is a big country. The percentage of patients who actually have access to testing is tiny. Most social media influencers, even in the chronic illness community, come from a place of privilege in the first place. Having exceptional insurance that pays for testing is a privilege, paying outside of insurance is a privilege, having friends and family who can help you fundraise is a privilege. EDS testing needs to be more available and standard worldwide. Hopefully this will happen as research continues and more genetic variants are identified.
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I probably have one of the best insurance plans in my state and I was refused approval for testing on the grounds that it was "investigative", even with classical and quite a few vascular manifestations. Luckily, I was tested through the company Invitae which at least at the time had a policy that if insurance refused to pay then the patient paid a flat fee of around $200. This may have been an agreement with my specific hospital, I'm not sure. I was very lucky.
I only spoke about the UK as I’m from the UK & I know enough about it to speak about it. And I said a lot of people in America can get genetic testing, of course that doesn’t mean that everyone can
Oh, and I have been constipated my whole life! And I have horrible episodes with a stomach pain so severe I pass out when I get as I call it, a stomach fit, with diarrhea. But on an every day basis, I am constipated, often for 7-11 days or more even.
Disascraftwork talk to a doctor about it if you can, there are things they can do to help! That sounds really horrible for you, I hope they can help! Even if it’s just to prescribe laxatives and suppositories or something!
Have they given you Mestinon to treat your constipation yet? That drug also treats POTS and fatigue. It was patented 75 years ago, so it is very affordable.
@@Dulcimerist No, I get no help with anything. I get traded like I am imagining being sick, despite the fact that I have the EDS diagnosis, Me, Fibromyalgia, broken bladder, Migraine, severe allergy with many many anafallyctic chicks and allergic reactions and severe asthma with constant asthma attacks, especially now in covid times when I get an asthma attack every time someone put hand sanitizer on their hands. It is all there for every doctor to read, but if I go see a doctor, for any reason, I get no help. They treat me like I am crazy. I even have 2 experts psychologist evaluations, saying there is nothing wrong with my head, nothing psychological wrong, no diagnosis in that area what so ever, also for every doctor to read, yet I get treaded like I am crazy. I will not go see a doctor again if I can avoid it, unless I am dying.
@@Disascraftwork Sounds like you need to fire your current doctors and hire new ones. You could also put together documentation about your physical health issues - namely EDS - and complain to your insurance company that the doctors are taking their money and not providing medical care. Your doctors blowing you off and erroneously dismissing real physical medical disorders as psychological is being done, simply because they are in over their heads with EDS, don't understand it, don't know how to treat it, and their egos and own incompetence prevent them from admitting it. Their denial of proper medical care for your EDS is a violation of your rights as a human being to receive medical care, and is outright medical negligence and malpractice.
Your allergic issues are likely Mast Cell Activation Syndrome, which often accompanies EDS. Do you see a rheumatologist?
Check out the articles here to empower yourself with more information about EDS:
www.ehlers-danlos.com/2017-eds-classification-non-experts/
www.chronicpainpartners.com/attention-doctors-an-eds-patients-bill-of-rights/
@@Disascraftwork Here's more information about your apparent undiagnosed MCAS that accompanies your EDS:
www.aaaai.org/conditions-and-treatments/related-conditions/mcas
tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/
www.healthline.com/health/mast-cell-activation-syndrome
I was diagnosed with ME before I got my EDS and POTS diagnosis and I personally believe this is down to lack of knowledge from doctors
It's still down on my records that I have ME
However what I've learnt is both EDS and POTS cause extreme fatigue just like what is described with ME patients
EDS from hypermobility, because of our loose joints, our muscles become overworked as they now need to help support rather than just do their job which is movement, and this is why strengthening exercises are so important.
POT'S causes fatigue through poor circulation, parts of our body don't get the fresh blood because of pooling. And because our heart rate is so up and down throughout the day. I'm exhausted just thinking about that one 😂
Some of this maybe really obvious, but this is my understanding
Hope it helps x
Kurtis thanks Kurtis!
I was also diagnosed similarly! It is astounding and disappointing all at once.
@@jenniferpoyntz was you?
You're right though, it shouldn't happen. I honestly believe if I never got the EDS diagnosis I'd of never got tested for POTS.
Oh my goodness, I went to Pilates classes for a year and did really well. But whenever I try to do it at home with a virtual class, I ALWAYS hurt myself! Now I know why! Poor proprioception!!
Why this is so me…. I’m recovering from a shoulder injury… a fricking dislocation caused by me just watching tv in a awkward position….
Sending spoons and well wishes! 💗
I have some of those symptoms, like the clumsiness of properception - if I don't watch where I'm walking I'll trip over tree roots or sidewalk cracks. My gut is seriously messed up and if I eat the wrong thing I get constipated. Numerous food allergies and foods I can't eat yet I don't test positive to anything on IgE. Some of it does show up on IgG but not everything. I think I have MCAS as I react to lots of airborne fumes, especially stuff like perfume, air freshener and fumes from restaurants - sometimes 1000 feet away. And I sure have the temperature disregulation too! I can be sweating like crazy but my body temperature is 97 or 96 F. And I can be both too hot or shivering at the same room temperature. It doesn't make sense to me! One really weird thing is I can put my hands into hot water to do dishes but my body will start shivering?? And years ago I got bit on the hand by my cat, it got red and infected but I had zero pain!! All of my joints are hypermobile, even my toes. And I have autism too. As a kid I had thought everyone had elbows that bent backwards. My mother was constipated her whole life. Oh and I have celiac too..my doctor doesn't see any connection between my gut problems and my hypermobility..she just ignores my request to be diagnosed with hypermobility spectrum disorder. She loosely says I probably have ibs. I think I have low stomach acid...I can still do all the hypermobility tricks and I'm almost 50. Sometimes I have the fatigue, especially if I'm glutened. And my sleep is awful! About 4 hours a night..
Hi! It is possible for those things to be u related as other than the hypermobile joints none of them are on the diagnostic criteria for a connective tissue disorder or HSD (they just often go along with it), but it may be worth having a look over the 2017 hEDS criteria which you can find online to see if you do have some of the diagnostic criteria- that will give you an idea of whether you may have something like hEDS or HSD
OMG not being able to lie/sit straight on command is a thing?? It's not just me?!?! Mind blown...😳
Yes!! You’ve finally found your people haha, it’s a proprioception issue which is common in EDS! It’s possible to have this issue & not have EDS, but it’s much more common in people who have EDS like we do! I’ve just seen your comment saying you’ve finally been diagnosed, & I’m so happy you finally have answers 😊 I know that can’t have been easy to be undiagnosed for so long, but I’m really happy you finally know the reason for a lot of your symptoms 😊
I was lucky; I finally asked my Dr about it because a 3rd person asked if I have it. Turns out my Dr has a family member who has it, and she had a why did I not think of that moment as we were talking because my mom and at least 2 of my 3 sisters also have had a bunch of small things going on that could very much be explained by it.
I’m glad you have a doctor who’s knowledgeable about it!
I found that too little magnesium can cause both constipation and diarrhoea cyclically.
It was found potassium deficiency was causing my urinary retention. It can also cause tachycardia and short P-Q Interval in heartbeat.
Thanks for the info!
I’m diagnosed with HEDS, Pots, and Chronic fatigue. Recently my hands have been going down hill so I’m constantly dropping everything. My doctors seem so clueless about it. It’s so difficult.
Sorry to hear that
I haven’t had genetic testing either, even though my son and maybe one grandson are affected
Penelope Polins née Meyer there really needs to be more funding for it! hEDS is still genetic, even though the gene hasn’t been identified (yet), but so many other types fit the hEDS criteria that it isn’t always an accurate diagnosis!
Thank you for this video ♥️ The bladder issues mentionned on the title made click on the video. Hearing you talk about that made me cry because I don't feel so alone with this anymore. Ever since I was a child, I've had issue with my bladder, and it's getting worse and it makes me feel so bad about myself, but I still haven't found a doctor that could help with this specific problem 😭 I can't remember what it feels like to have a functioning bladder and not going to the bathroom 10 times in the space of an hour to maybe feel ok enough to go to sleep.😭
I guess the bowel problems do not help either, but at least they are somewhat manageable with a routine like you said ♥️
Also, having a passion for dance and being an absolute disaster with coordination and stuff... Not fun 😅
Also the sneezing/yawning thing and temperature regulation also spoke to me ^^
Sorry for the long comment, I just wanted to thank you for what you do and got a bit carried away ^^ Take care ♥️
Have you seen a urologist before? It’s most likely overactive bladder, which there are medications for 😊 but it may be a good idea for them to scan your bladder or do urodynamics testing to make sure you don’t have incomplete emptying (this is less likely from the symptoms you described, but it would be good to know for sure). Hope you can get some help for it soon 💕
@Georgina's Journey Hello, thanks for responding 💓 I did a imagery that sadly was not conclusive. The doctor who diagnosed me with EDS. was a bit worried about the urodynamic exam, because I don't really respond well to somewhat invasive tests or to some medications as well ( I'm that person who gets weird side effects sometimes) so it's a bit of a tricky situation 😅 Is there a medication in particular you've heard good things about ?:) Maybe new things came up since last I checked ^^
Thank you for your compassion and for offering advice ☺️ I hope you have a beautiful rest of your day !
If there’s any way you can see someone privately Professor Malone-Lee in London has changed my life. I now go to the toilet 3 or 4 times a day and once or zero times at night. Best money I have ever spent.
I definitely understand. I got to the bathroom so much during the day that it's insane. Like 40+ times a day. I'm 16 so it's really hard to be the only student that's going this much. Turns out due to EDS I have 3rd degree pelvic organ prolapse for all four of them
@@gimygaming8655 Thank you so much for your comment 💓 That's crazy, I feel you 💕 And here I was, thinking 17 times a day on average was bad oO so sorry to hear about all the stuff you've got going on down there due to EDS :/ I'm waiting for an MRI to get more info on what's going on 😊 Sending you love and best wishes for a future with a calmer bladder, someday 💕
Just been diagnosed with heds and pots and I also have ms,my daughter and mother also have a lot of eds symptoms
Since EDS is genetic, it’s possible that they also have it! With your daughter, it will be good to know what to look for in the future and also your diagnosis should help her get diagnosed if she ever needs to be! And I hope your mum is doing okay if she does have it and has gone so long without a diagnosis!
My mum gets tremors and falls over a lot, and is very weak. My daugther sits in a w like I did lol always complains of leg pain and shoulder pain and her finger are so hyper mobile. I was a dancer and always thought I was just bendy but I guess not. It's funny over the years I've typed my symtoms into Google and eds has always poped up . Xx love from Australia
I was recently diagnosed and have been waiting for my referral to a genetic counselor here in the US. It's been over a week, but I don't know what's a normal wait time for this here. I went through my raw genetic data from an ancestry report and I have a lot of pathogenic genes for EDS classical and some other subtypes, but I won't know for sure until I speak to a pro and it sounds like it might be awhile.
Hope you get to see them soon! I’m in the U.K. so most people don’t get to see a genetic counsellor here, but for other doctors, wait times can be up to around 2 years, but you can sometimes be seen within around 2-3 months, but I think wait times are shorter in the US
What?!?! Poor proprioception can be tied to EDS?! Wild. I'm currently laying in bed and when you mentioned it I realized I'm laying in a curve. I always assumed it was due to my sensory disorder.
If you’re diagnosed with EDS, it’s probably due to EDS! But there are lots of causes for poor proprioception, so don’t worry about it if you’re not already diagnosed with it
My 12 year old daughter and I both definitely suffer from fatigue along with hEDS and pots.
I hope you’re both doing okay!
Oh maybe i still have hope.. I go to the doctor next year, and I'll list out my symptoms ( I'll be 12/13 )
The UK may lack funding got genetic testing but in a way so does the USA because the cost of paying for genetic testing is beyond affordable for many of us and there are few doctors who will do referrals to geneticists since there are few geneticists around. My daughter has been a airing over three years to get into the one geneticist here
I hope she gets to see them soon. Most people with EDS (& especially hEDS) never get to see geneticists at all here, that’s the point I was making- people can’t complain about waiting times as they’re not even allowed on the waiting list to begin with. I know it’s often the same for people who don’t have insurance in the US, though. But from talking to my American friends, a big portion of Americans have insurance in one way or another
I feeel like the amount of time we have been in hospital or can spot eds we are better docs the the real docs
It does feel like that sometimes, doesn’t it haha 😂
Problem in the US too on accessing testing and geneticists. The research hospital in my state, the genetics department won't even see patients who suspect hEDS or cEDS. So my hEDS was diagnosed by a naturopathic doctor in their comprehensive pain clinic.
She has agreed to order testing for me, as I have some indications of cEDS, but it keeps getting put off (I was diagnosed with EDS in 2018, still no testing).
On ME, another one here with the pentad of EDS, POTS, ME, MCAD, and autoimmunity.
On urinary issues, did you mention incontinence? Feels like that is fairly common although not as common as retention issues perhaps....
Hope you can get the testing soon!
And incontinence is common in the general population & often not caused by EDS so I don’t like to mention things like that which can cause a lot of people to wrongly self diagnose, whereas urinary retention is not common in the general population & is often directly caused by EDS
Good point. Maybe not as common for those of us towards the younger end of things age-wise. In my case EDS, tethered cord (linked to EDS), and MCAD (common co-morbidity of EDS) all are contributing factors.
My concern is for EDSers like me, where I had my first major incontinence episode at 16, then had things worsen in my 30s, and where the incontinence pre tethered cord release was in large volumes, there is clearly something different going on than what is commonly seen in the general population, and the lack of discussion honestly doesn't help.
@@christinasteiger388 you could open up the discussion if you’d like to, there’s an active chronic illness community on both Instagram (through posts) and on CZcams (through videos) 😊
I have been tired my 64 years of life,my daughter too,we both have hypermobility EDS. We have low blood pressure and cold.
I take a medication called midodrine which has really helped my low blood pressure, could you ask your doctor about it? Mine was prescribed by a cardiologist, so maybe they could refer you to someone who can prescribe it if they can’t prescribe it themselves. And I am always very cold too
Pyridostigmine is emerging as a treatment option for gastroparesis and POTS in EDS patients.
I haven’t heard of that, but I’ll look into it!
@@GeorginasJourney it's also known under the brand name Mestinon.
Here's an article about it for POTS:
drsanjayguptacardiologist.com/blog/mestinon-a-glimmer-of-hope-for-pots-patients/
For gastroparesis:
www.digestivedistress.com/novel-rx
It's even super helpful for combatting fatigue and exercise intolerance:
www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/
@@GeorginasJourney My doctor decided to try me on the Mestinon (Pyridostigmine) a couple of months ago, and it's absolutely amazing! My POTS is much, much better controlled; and the digestive dysmotility, cramping, bloating, and regret after eating is pretty much nonexistent now - and I actually feel hungry now when I need food. Although this medication might not work for everyone who has EDS, it's highly affordable and might be worth a try.
@@Dulcimerist I’m so happy for you! I haven’t asked often, but my doctors don’t usually take medication suggestions well & they usually just give me whatever they think is best, so I’m not hopeful that I’d be able to try it :/
@@GeorginasJourney The main thing that got my doctor to agree to Mestinon was giving her a research paper about it by Dr. Satish Raj of the dysautonomia research center at Vanderbilt University. He is world-renowned for EDS dysautonomia research, and my doctor had attended some of his seminars in the past. I gave her several other research articles as well, so she had credible evidence to support it. She had never prescribed Mestinon to any patient before, and this is considered "off-label" use, so I'm thankful that she agreed. My gastroenterologist had said no, but had at least acknowledged it as a valid digestive dysmotility medication. I've had to learn to be assertive and persistent when dealing with the healthcare system. (I've been through the nightmare scenario of what happens when EDS diagnosis is delayed until later in life - some aspects of that can be worse than EDS itself.)
I know you mentioned chronic fatigue being a thing you don't know if people with hEDS have but I do have it just thought to say so you know you aren't alone!
Thanks ☺️
I have EDS and have being diagnosed with cfs as well. I can't tolerate heat either, having a hot bath makes me feel really ill. Do you often have low iron? I find myself having to have a course of iron from the Gp quite often, and wondered if it was an EDS thing or a poor diet thing.
Steph L hi! I have a folate deficiency (sometimes called folate deficiency anemia), but I don’t have low iron levels! Hope this helps!
@@GeorginasJourney thanks
I also have this issue! I take luke warm showers because anything warmer makes me really light headed and I still get red splotches all over my legs and chest when I shower even though it’s not hot! My hands and feet also turn red. Does the iron seem to help you?
@@larinavigil5225 this is exactly what I experience too!! I’m so confused by the red splotches when the showers not even hot!!
@@larinavigil5225 The skin color changes you describe (can be red, white, blue, purple, or a combination) are related to Raynaud's, which is super common in EDS. Our stretchy blood vessels (made of the collagen that EDS affects) dilate and constrict very easily, which causes this in response to the temperature changes.
My geneticist said I didn’t need a genetic test based purely on the fact I didn’t have the classic vEDS facial features and that was enough for him to proceed with the hEDS criteria. He also said the comorbidities I have should count but he couldn’t take my gastroparesis, IBS and POTS into account. The criteria was updated in 2017 after 20 years. It could be another 20 years 😬
Vascular EDS is the most dangerous, so if they can rule that out, they usually won’t fund testing. & he was right, POTS, IBS & gastroparesis are not part of the criteria for hEDS
I was diagnosed with hEDS; but I couldn't get vEDS testing, even though 3 of the 6 cousins on the EDS side of my family died unexpectedly of aneurysms.
I’m so sorry you couldn’t get it, if you’re not an ideal candidate, I don’t know who is 🤷🏽♀️ My grandad passed away from a heart attack in his forties, my brother had heart surgery at 21 and I still wasn’t eligible either. I know it’s hard and they don’t always listen, but is there any way you can bring this up with a new GP and ask again?
@@GeorginasJourney I'm unsure - I believe my primary care physician would be supportive, but my health insurance company would deny coverage. The rheumatologist who diagnosed my hEDS in 2013 said that he could rule out vEDS, since I survived a highly invasive cancer surgery that gave me an 18 inch abdominal scar and moved my organs around while removing lymph nodes. I'm unsure if that's necessarily true. This doctor also refused to believe that my POTS was connected to my hEDS, since he seemed to erroneously believe that hEDS only affected the joints and caused only pain and fatigue. He really didn't know much about EDS, other than how to recognize and diagnose it. (I wish more doctors knew how to recognize and diagnose EDS.)
I'm new to your channel. You are so knowledgable! You should go into medicine. Maybe you already have.
5P hi! Thank you! I tried to get into it at university 2 years ago and the hours were too long and not enough accommodations could be made unfortunately. So for now I’m studying English language & linguistics at the same university. I’m hoping to find another way to work in the medical field in some way in the future though, so I will keep thinking and exploring some options :)
Georgina's Journey Hi Georgina, I always wanted to get into the medical field as well and now I’ve started my bachelor’s in Occupational Therapy. In my country there are more accommodations available and the profession is also more accessible and flexible than medicine. Just wanted to let you know about this option because lots of people have never heard about OT. ♥️ Lots of love, Lesley 🌻
LesleyMichelle2000 hi Lesley! I actually really wanted to go into OT, but again, the hours were far too long for me and I couldn’t do it :( Thanks anyway though and good luck with everything!
@@GeorginasJourney ah that's so cool and such a shame it has long hours in the uk :( I'm doing reduced hours and less courses a year and am hoping for some accommodations, hopefully that'll make it manageable. Thanks for your reply and sending you good luck as well!
I think the fatigue thing is because it takes more brain and muscle control to keep a body upright when it's so bendy.
it doesn't feel that way for me.I'm also not extremely hypermobile/bendy, but I have severe and debilitating fatigue
America is not better.... My foster sister was diagnosed with eds but was denied testing because they didnt take her insurance. Things got really bad, she lost eyesight around 4 months, then mobility. She went into the er again and has been in over a week and now shes using a catheter. Its been really hard to support her, shes so tired of everything and feels like shes no longer a functioning human. Its really scary and I cant imagine what its like for her.
I hope they can help her & that she can find ways to cope with it all. If it’s any consolation, I don’t think testing would have helped a lot of those things anyway. I have a lot of friends who had genetic testing, but still have catheters, feeding tubes, central lines & wheelchairs as there’s nothing that can fully help them. That being said, those things don’t have to mean a bad quality of life- my friends who have all of those things are now stable and doing well. I hope your sister stabilises soon as well.
I think in the United States we are able to get genetic testing done easier because most of us are on private health insurance (even though to see a genetics it can take years), and most states that offer Medicaid do not cover genetic testing.
So basically, America’s health care system only cares about how much money they’re getting.
Hannah thanks for the insight on this!
Any issues with swallowing? Also, I can't find a link to the wrist supports you mentioned in another video ~ can you share? Thank you!
I don't really have issues with swallowing, but it is common in a condition called FND which a lot of people with EDS also have. I don't use any supports that are just for wrists anymore, but the black thumb and wrist support I use is from Ossur and my thumb braces are Push Ortho CMC thumb braces. You can find out more about them in this video: czcams.com/video/mgdkjQuAwq4/video.html
#relatable haha.. I have my ileostomy since july, and also my bladder stoma.
I hate the bladderspasms...
Hope you can find something that helps? Maybe bladder botox? I have friends who have a suprapubic catheter who get bladder botox to help with the spasms! Or buscopan can also be helpful, or some of the medications that are typically used for overactive bladder (since that also causes spasms)
@@GeorginasJourney Thank you for your message!! I didn't know you could use buscopan for something else then IBD. It's worth trying!
Because my doctor says I have now tried all the medications, and bladder botox,... This month I'm getting botox again, but with another medicine (I don't know what it's called..)
But honestly I think it is caused by my large intestine, which is leaning INTO my bladder. One doctor said it is so far in, my bladder is split in two rooms (Thank you EDS)
But other doctors say that doesn't matter.....
I don't know! But I am trying everything.. Even weird tea's haha.. So thanks!
@@WhoAmI2YouNow buscopan is usually for IBS, rather than IBD, but it can also be taken for spasms of the bladder or urinary tract. I hope the injections help you
Omg I pulled a muscle from yawning and didn’t even make that connection
I live in the US and I was told that insurance wouldn't pay for genetic testing. I would have to pay out of pocket if I wanted it. I think most pay for testing.
That’s interesting, my friends in the US didn’t have to pay for it, so I think it depends on your insurance maybe?
@@GeorginasJourney That's possible. I'm insured through the government because of disability. Insurance companies are very inconstant with what's covered. I think places with government health care probably don't have as many variables.
I have hEDS but had to pay out of pocket for testing in the US. There wasn’t a genetics lab in my insurance network so they wouldn’t cover it. I did come up with a haploinsufficient mutation of the tnxb gene but my geneticist said that is for now still classified under hEDS. I also have bowel and bladder issues. My mutation is known to cause bladder reflux into the kidneys. I have to use pubic tapping to help pee often. I have issues telling when I have to pee. Fatigue is awful but I also have inappropriate sinus tachycardia which is a type of cardiac Dysautonomia and is common with Eds and causes fatigue. Often I feel like I’m being pulled into sleep and can’t possible resist it. I’ll also get very very antsy when I need to sleep. My temperature regulation is horrible. I get hot and ill from it so easily and faint or get very nauseous. I often wake up with my jaw stuck from laying on my side. Chewing gum has also gotten me stuck to the side so I avoid that now. I wasn’t diagnosed until after 30 and was told to exercise and get stronger my whole life.
Glad you finally have a diagnosis! And I can relate to a lot of what you said
@@GeorginasJourney getting a diagnosis was a huge psychological benefit. I always felt weak and at fault especially when constantly being told to just exercise and get stronger. Just knowing it wasn’t my fault took a huge weight off.
My GP told me she was taught about EDS in medical school - but as it is a rare disease (although up to 1 in 5000 people have it), it means a GP is unlikely to have one patient or even several patients with EDS and like so many other rare conditions they forget about it. What I wish that GPs were more mindful of is: Yes, if you hear hoofbeats, think horses, not Zebras - but Zebras still exist. So if a patient comes in with say stomach troubles, they likely have IBS. But if they keep coming back with more and more issues, think: Is there anything which connects these? And if you can’t connect the issues, think connective tissues.
Just like a headache is most likely just a headache - but it could in rare cases be a brain tumour. If the patient with the headache then comes in with dizzyness and visual problems, most GPs would eventually send them for an MRI. Why does the same not apply to EDS?
I think most of us in this comments section agree!
Esther, that's wrong : French Professor Hamonet who is the best EDS specialist in France and has been studying the disease all along his career said it's a current pathology but still UNDERDIAGNOSED.
Wow I have so many of these things and I had no idea these were eds things. Also you could never have dislocated a joint and still have eds
It’s stuff a lot of people with EDS experience, not everyone will experience all of them and it’s also possible to have a couple of these without having EDS. Hope that clears this up for you!
EDS UK has a GP Toolkit for doctors.
They do, but even when you point many doctors to it, they will refuse to use it :/
I thought that fatigue and POTS were two of the most prevalent symptoms of EDS.
POTS is a co-morbid condition rather than a symptom & it’s actually not on the diagnostic criteria for EDS! Lots of people with EDS don’t have POTS at all 😊Fatigue is subjective I guess- I know plenty of people with EDS who work 8 hour shifts and stay awake for 14+ hours in a day which amazes me, so maybe fatigue is common, but it’s just not common for it to be severe. I can usually only work or leave the house for around 3 hours before I crash badly (my crashes vary a lot, sometimes it’s just falling asleep or fainting, but sometimes I end up in Resus or majors at hospital). So it’s pretty rare for me to manage more than 3 hours of anything
I’m trying to get a diagnose for hEDS. But the doctors think that i dont have EDS beceause my skin isn’t super velvety and i don’t bruce super easly. But i’m verry flexible, subluxate my joints more than 70 times a day and sometimes dislocate, have problems with my stomac, my back, can’t regulate my body tempreture when i’m tired, i have a lot of weird allergy reactions on my skin, i will pass out when i take a hot bath, i have problems with my mucles every day, and i could go on and on with the problems i have.
My question is: can you have heds without a super soft skin and bruising easly? My skin stretchy but just not so soft.
My second question: do other people have problems with getting a right diagnose? I’v been to a lot of doctors and most of them dont believe me they think i’m a hypochondriac when i start talking about heds. But my problems affect my a lot. I cant work of go to school and i have lost a lot of friends beceause of my problems, i just can’t keep up with them. It’s not like i want to have heds, i just want some awnsers to avoid more problems in the future. I would really like to know how other people handle these problems, and maybe get in touch with people in the same situation, it’s kind of lonely knowing no one with the same kind of problems.
And georgina, i really like your video’s, they are verry helpfull and it is so brave the way your talking about your problems😊
Marijn Lene Hadders hi! Yes, I’m pretty sure you can! I would advise you to see another doctor and ask to be referred to a rheumatologist and then ask them if you can be tested against the 2017 hEDS criteria- that’s the only way you can get an official diagnosis of hEDS, not every rheumatologist will diagnose EDS, but they should at least discuss whether they know enough about it to do so if you say you think you might have it. It might also be helpful for you to read through the 2017 criteria for hEDS online as it will give you an indication of whether you have it. To be tested for the other types of EDS, you’d need genetic testing- I’m not sure where you’re from, but as I said in the video, they don’t really offer it in the UK, very few people with EDS or suspected EDS have had the genetic testing here :/
And I’m glad you enjoy my videos :)
@@GeorginasJourney i've been to a clinical geneticist. And she said that i didn't had EDS beceause my skin wasn't velevty enough(i pass the hEDS criteria without the stretchy skin). So i recently asked if i could get a second opinion at an other hospital, and the clinical geneticist canceled my appointment beceause they said that they were bussy and that it wasn't important that they tested it beceause you cant test it by the genes. And that a physiotherapist could test me for hEDS. But thank you for the tip. i will discuss with my doctor if i can get a second opinion at a reumatologist. I live in The Netherlands and there isn't much knowledge about hEDS. But tank you for youre respons. It means a lot to me☺️
I can relate to all of that, I do bruse easily, but 70 subluxes a day? You poor thing. Are you taking anything for your pain? I have found that cymbalta works really well for blocking the nerve pain. I'm so sorry for your problems, hopefully you can get everything solved soon. A good rheumatologist helps.
@@elizabethvandeventer5487 i just started with nortriptyline. Haven’t noticed anything yet, but it can take some time before it really works. And i finally found a docter who knows a lot about hEDS. He has a verry long waitinglist, but is the only doctor in The Netherlands who can diagnose me. The clinical geneticist dont take people with hEDS anymore, only when they suspect an other type of EDS, you can get placed on the waiting list. Its nice to meet people i can relate to.I can’t go to school anymore and lost most of my friends beceause of my health problems. It’s just hard to keep up with them.
Any doctor can diagnose your hEDS - and it sounds like you definitely have hEDS. A rheumatologist diagnosed my hEDS. This isn't rocket science! All they need to do is go through this easy checklist:
www.ehlers-danlos.com/heds-diagnostic-checklist/
If you do meet the criteria for that, just tell all medical personnel that you do have hEDS but a clerical error omitted it from your records.
The doctors obsessing about the minor criteria about velvety skin is absolutely ridiculous! Also, any doctor who calls you a hypochondriac is lazy, incompetent, and a disgrace to the medical profession. Constantly subluxing your joints is not normal! This is a major criteria for hEDS! The doctors should be elated to diagnose you with hEDS, because it would be a unifying diagnosis which would explain all of your medical issues and make you much easier for them to treat and provide you with medical care!
Here's a useful article describing the systemic effects of hEDS:
www.ehlers-danlos.com/2017-eds-classification-non-experts/hypermobile-ehlers-danlos-syndrome-clinical-description-natural-history/
I’m pretty sure Medicaid in the US doesn’t cover genetic testing. I have Medicaid, and a lot of doctors don’t take that insurance.
Really sorry to hear that
Genetic testing is almost impossible in the US unless you are incapacitated or have many other conditions. I am not sure how people even get tested. I definitely have Chronic Fatigue and my jaw pops and clicks a lot. Doctors are still clueless as a whole.
At the time of filming, many people in the US were getting the EDS or connective tissue panel done with invitae for $200-$300. Here, nothing like that exists, it would cost many thousands to get something like that done
Yes fatigue!! But I also have fibromyalgia and that comes with fatigue so hard to tell. Besides just being tired a lot, my fatigue comes with terrible muscle tiredness too. I can only hold my arms up for 5-10 seconds at a time without them shaking and eventually dropping. So frustrating. Also jaw issues... ugh. I have to spend $20k to fix my dislocated, deteriorating jaw 🙄
This happens to me too! My arms shake so easily, even from lifting things that aren’t that heavy! And I’m so sorry to hear about your jaw!
Having EDS is a disqualifier for meeting the diagnostic criteria for fibromyalgia, since your EDS diagnosis is the differential diagnosis to which your pain and fatigue can be attributed. An EDS diagnosis supersedes a fibromyalgia diagnosis.
@@Dulcimerist you are technically right, but sometimes people are given the two diagnoses anyway. & I don’t agree with questioning people’s diagnoses, because if that’s what their doctors have said and that’s what’s in their medical notes, it’s not up to us to dispute that. For example, I’m diagnosed with both CFS & EDS, and while my EDS diagnosis does technically disqualify me from having CFS, my CFS symptoms are so severe & can’t be explained by EDS, so my doctors have kept that diagnosis so that other doctors can understand my personal range of symptoms better and treat them accordingly. Kelcey may be in a similar situation with her EDS & fibromyalgia
@@GeorginasJourney Yeah, that fibromyalgia diagnosis would act to illustrate to other doctors that a patient has chronic and severe pain from their EDS, which is beneficial since many doctors erroneously believe that EDS only affects the joints. There might also be a large amount of neuropathic pain present, which might not fully fit the EDS pain profile in that case. That's a good point.
Prior to my EDS diagnosis, I had been misdiagnosed with fibromyalgia for two decades. Although I could still have fibromyalgia as a diagnosis, the attitudes of doctors and the quality of my healthcare dramatically improved after EDS replaced fibromyalgia in my records. Unfortunately, many doctors out there have a stigma against fibromyalgia, and will regard the physical symptoms of fibromyalgia patients as purely psychogenic in nature. Since doctors don't know what causes fibromyalgia, many call it a "functional" disorder, which is the word they use for psychogenic. Since EDS has a known physical cause - a mutation of any of the various genes associated with collagen - doctors are much less scientifically able to write off and ignore the physical symptoms of EDS. For the sake of clarification, it probably would be good to ask a doctor if the EDS diagnosis is able to replace the fibromyalgia diagnosis or not.
My background and experience is the common nightmarish delayed EDS diagnosis story, which is what prompted me to bring up the subject. My symptoms hit as a teenager, doctors wrote them all off as psychogenic and fibromyalgia, inappropriate medical treatment made things worse, doctors labelled me a hypochondriac and refused to treat the EDS symptoms, and I didn't receive the proper EDS diagnosis and medical treatment until 20 hellish years later. The medical bias I experienced because of doctors seeing fibromyalgia in my medical records caused me a lot of grief and suffering. I wish that kind of thing didn't happen to people.
@@Dulcimerist you also raise a good point and sadly I have heard of this sort of thing happening a lot regarding the fibromyalgia diagnosis. And I also rarely discuss my CFS diagnosis with doctors for the same reasons
if I pull up my pants from the belt loop my thumb dislocates 😂 anytime I do something normal and something goes wrong I’m like really body, really?
Fiona M I’ve talked about it quite a lot on my channel, but my thumbs dislocate from pulling up skirts and trousers full stop aha, doesn’t even have to be the belt loop 😅😂 I wear dresses quite often these days!
Urinary incontinence I solved with an interstem.
That’s great. Not all urologists are willing to try that though
I love it accept I have to carry a 2nd phone around and worry about charging.
Yes, yawning isn't fun and neither is chewing meat.
I don’t eat meat so I didn’t think of that, but that’s a good point! I bet that’s quite tricky!
I fall down in a room with a strobe light. Also horrible motion sickness
Me too, a lot of my friends who have EDS don’t get motion sickness though. I throw up in a car after like 10 minutes usually
I have literally never met any one as bad as me but it sounds like you are? As a child I was always vomiting in the car
I was called "puke-ifer" by my siblings and mom didn't want to take me anywhere.
I get dizzy if my kids shake my bed while I'm laying down and I get scared I will have an attack of nausea, vomiting, and dizziness which come out of nowhere
Yes, it’s the same for me! My motion sickness is quite specific though, I used to go on boats & aeroplanes & be okay with travel sickness tablets, but I cant do anything on the road for more than a couple minutes (car, bus, coach, etc). Are you on any medication for your nausea & dizziness?
No because I'm sensitive to everything. Promethazine makes me sleep. Zofran really works though. I head for saltine crackers most times (salt makes me feel better during a bad attack)
I take promethazine every night to help with my nausea at night & in the morning, do you think that could help you? I don’t take it in the daytime, just before bed & it’s pretty good! 8mg Zofran is great for nausea but most people can’t take it often as it’s…extremely constipating 🙈 have you tested yourself for pots at home to see if that could potentially be causing your dizziness?