How well did
ฝัง
- เผยแพร่เมื่อ 25 มิ.ย. 2021
- In his latest video, Doctor Mike discussed Ehlers-Danlos syndrome, a genetic connective tissue disorder that causes chronic pain, joint hypermobility, dislocations, and many other symptoms. In this video, I react to how well he spoke about my disease, in my opinion!
EDS Patient Reacts to Doctor Mike: • EDS Patient Reacts to ...
Doctor Mike's Video @DoctorMike : • What Causes Stretchy S...
SUBSCRIBE TO MY CHANNEL ▶ bit.ly/2M4Ko0c
📸 Instagram ▶ / izzy.kornblau
⏰ TikTok ▶ / izzyk_dna
The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
✩ ✩ ✩ ✩ ✩ ✩
WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
#doctormike #ehlersdanlos #eds
Wishing that Doctor Mike didn't show extremely exaggerated cases of EDS, as that reinforces the problem that doctors have when they encounter people with EDS. Too often doctors have only seen or read case studies about the very severe and extreme EDS patients who can do really crazy skin and joint stretches. Because of this, many doctors believe that all EDS patients need to be that extreme. As a result, they're more likely to dismiss the notion of EDS in patients who actually do have EDS, but with less pronounced stretchiness.
I agree 100%
yes! I completely agree with this! I can't stretch skin away from my face or bend my fingers all the way back, but after speaking with a geneticist for over an hour it was determined that i do have EDS. It was nice to have someone listen!
@@showtimesynergy87 similar to me, but I haven’t been diagnosed yet. I am double jointed but I can’t stretch my skin.
My mom went in for her diagnosis but had a lot of trouble getting in because she can't bend her joints far eough (she has arthritis). The only obvious sign she (and I can too!) show was using her hips and ankles to bend her twist her feet behind her. So lucky she was with a doctor who tried to push for her to go through!
@@EjayT06 I was found to have a mixed type of EDS so I have vascular issues causing aneurysms, strokes, but I have hypermobility in joints, and yet skin is quite normal. This mixed type threw the genetics team because they had their rigid types. Really frustrating trying to go for healthcare for other issues and you have to explain to the anethetist what you have
When I was little I was told by the doctor that I had “loose joints” and later that my menstrual pain and exhaustion was in my head. I didn’t know anything about Ehlers-Danlos until my niece described the symptoms in her daughter about 2 years ago. I am 70 years old. So many things make sense now. I wish we had known 65 years ago.
My sister and I have eds more severely than our other siblings. We didn't find out until I was in my late 40s. Had we known as kids our joints could have been protected during exercise and play. Annoyingly I caught that sister encouraging her young son to bend his fingers back. I stopped him and explained the damage it was doing. She should have known better.
I'm pretty sure I have EDS. Is exhaustion part of it? I was told same about loose joints. But I still don't know much. My back is not aligned correctly but it's not enough. To call scoliosis.
@@dianeblocher3844 I was diagnosed with chronic fatigue syndrome before it was accepted. But 30yrs later I think it is part of the vascular type of EDS I have. You can get a genetic test and they tell you type, and if u have EDS. There are other less known similar syndromes too.
@@joywebster2678 I'm not going through genetic testing. It is obviously genetic my daughter and granddaughter have it too.
@@dianeblocher3844yes. Try for diagnosis, see a geneticist or rheum
LOVE the emphasis on the chronic pain aspect of life with EDS
100% omg its big oof. No bueno. Just got knee braces and honestly they are life changing!! I figit with my knees/ankles, before my braces I wouldnt be able to walk at the end of the day.
What if Dr. Mike and Izzy teamed up and made a more thorough EDS awareness video ? A future geneticist and current Doctor teaming up for EDS awareness would be cool!
I mean, I’d Doctor Mike is interested, holy crap yes!!!!! Hahhaha
@@princeloup5093 Sorry your EDS isn't being cared for. It's actually medical malpractice/negligence to withhold pain management from people who have chronic pain conditions. The United Nations took it a step further to declare the withholding of proper pain management as a human rights violation. Doctors have been sued and had their licenses to practice medicine revoked, due to withholding pain management from patients who have chronic pain conditions.
Dream content!
Yes!!!
I hope so
I have EDS and a lot of conditions related to it. POTS, Arnold Chiari, Gastroparesis, TMJ, spinal instability, & of course chronic pain. I recently went to the doctor ( rheumatology) and I noticed in my chart they listed every problem that I have ever had related to EDS they broke it down as if they were problems in themselves, as a primary diagnosis and didn’t put the fact that it was related to my EDS, it looks like I had 55 problems! which I don’t, I have one problem, EDS with multiple symptom related to it. He actually said nobody can have all of your health problems unless they’re “Crazy”. At that time I didn’t know they were all listed and was confused & hurt that he said that. it’s so frustrating that he acted like he knew what EDS was, but obviously didn’t.
That’s so annoying!!!! And I’m sorry the doctor said that to you 🙇♀️. Mine are listed the same in one of my hospital portals and it looks like I have a hundred issues and diagnoses and I don’t like that
Sorry you experienced that. It sounds like you need to "fire" that incompetent doctor and "hire" a competent doctor. I've had to do this several times.
Most doctors would be elated to see the EDS diagnosis as a unifying diagnosis that ties all of those health issues and symptoms together. It puts them all into a neat and tidy package to help the doctor understand everything that's going on, and makes a "complex" patient seem a lot more simplified and easier to care for.
You need to sit down with a nurse or decent doctor when you go through your medication list and get vitals checked during an appointment, and have them write the phrase "secondary to Ehlers Danlos syndrome" after every single one of those EDS-related conditions that are listed in your medical record. If you don't have all of those labeled as "secondary to Ehlers Danlos syndrome" to indicate EDS as the cause of them, many doctors will assume that all of those issues are "functional" in etiology, which means that the cause is unknown - and the label "functional" is a euphemism among mental health doctors and neurologists that the health issue is "all in the patient's head" and that the patient's health issues are psychogenic and that the patient is "crazy" as your doctor so rudely and egregiously mentioned. If you have EDS, you absolutely do not want to see the word "functional" describing any of your health issues.
@@Dulcimerist Thank you for the advice. I will definitely have someone fix this list. It’s in a computer system and will follow me to a new doctor. I don’t know what happened. Mistakes like this really hurt EDS or any chronic pain patients with their care.
Yes, because you are in fact 55 individual units, and not one whole human with connected organ systems
/s
@@shellyrae777 One bright spot is that Mestinon (Pyridostigmine) has emerged as a a repurposed new treatment for both POTS and gastroparesis. Perhaps that might help you. My doctor prescribed it to me since it can treat multiple EDS issues with a single medication, and it has been a miracle pill for me. Look up articles about that medication treating POTS by Dr. Satish Raj of Vanderbilt and also Dr. Sanjay Gupta.
My Doctors repeatedly told me they didn't understand why I was "complaining of so much pain, when my back was SOOOO flexible"! They actually used a symptom against me to call into question my honesty about the level of pain I was experiencing!
I just kept getting told that I was too young to be in so much pain. I'm nearing 40 now and apparently still too young. I do worry what they're teaching doctors in medical schools.
@@mydogeatspuke I have marfan syndrome a pretty similar thing and am in my mid 20s have the same problem convincing especially doctors that yes I have chronic pain just changed cardiologist and looked through my records they had on me and every time I told him I had chronic pain but nothing strange for me they wrote down no pain
@@kingofgar101 hahaha I was referred to a pain specialist a few years back and he asked if my pain ebbed and flowed. I said no, it was constant and worse whenever I used my body. He said "but that's what fibromyalgia is!" Yeah, weird how I don't have the symptoms of a disorder I don't have, right? Wrong. He discharged me with a prescription for anti depressants because "they're the best treatment for fibromyalgia." I actually went back to the idiot rheumy who put it on my record "just so something is on there" and told him it was unacceptable and how I was being treated because of his refusal to properly investigate my symptoms and that I wanted a second opinion so he would need to refer me elsewhere. He wrote an internal note saying that I had fibromyalgia (even though he admitted I don't to my face) that he diagnosed but that I "think there is something seriously wrong" with me, and that I have a history of mental illness. Even now, with my heart rate increasing from 80 to 140 bpm and staying there when I stand, and my blood pressure suffering a diastolic drop of 14, nobody will even consider a cardiologist for POTS. Apparently I just get dizzy because I don't eat enough, according to an obese dietician who didn't understand that I can't force myself to eat like some kind of pig if I don't have an appetite and decided I have an eating disorder, which is how I maintain a normal BMI. Sorry, I'm constantly mad about all of this. Basically all doctors belong in the bin and it's ridiculous how they get away with causing so much unnecessary suffering. None of the stories I read from people even begin to surprise me.
a lot of doctors are super arrogant and will take years to ever admit they are wrong you just gotta beat them over the head with the correct information until they either except it or you give up on them and start beating the next over the head with info
@@kingofgar101 quite, although after spending almost 20 years trying to get these issues addressed as they progress into more disabling issues, likely exacerbated by the stress of trying to get them addressed because cortisol is a particularly damaging hormone that evolution surely should have filtered out by now, one has to wonder whether there's any real point in trying. Diagnosis is supposed to help guide treatment and help doctors understand your experiences, and evidently you simply cannot be experiencing these things if you do not have the diagnosis and thus cannot access the treatment, and therefore cannot get recognition based on the treatment working. Even something as simple as 87 pence b12 injections when blood levels are marginally above the low end and you have been symptomatic for 10 years is completely impossible. It's like arguing with people online who refuse to just look on Google and see how wrong they are, except it actually matters. As time goes on and more doctors qualify, I find myself being dismissed by people young enough to be my children, always in the face of tangible evidence (bloods, scans etc), and it just makes me even more angry and bitter. Either way I'm suffering, but giving up at least doesn't increase the suffering "do no harm" inevitably causes. I completely sympathise with anyone who decides they've had enough. It's no way at all to live.
I’ve been trying to sound the alarm about EDS in my granddaughter since she was a toddler. She’s now almost 17 and finally has found a Dr who is willing to investigate it!!
I’m getting “tested” for EDS currently. I have 7 points of the Beighton score and a history of dislocating the same wrist. I have TMJ dysfunction, chronic joint pain, my physical therapist figured out I’m hyper mobile and can over extend which is what’s causing a lot of my pain. I literally thought everyone felt like this, I thought it was normal to have knee and wrist and back pain at 10 years old and that everyone deals with that. Turns out, it could be a chronic illness 🥺
Yep I’m in the exact same situation and I’m already over my idiot GP … you wouldn’t believe some of the stuff she has said to me
I have 8 points and after telling one of my doctors about dislocating my collarbone which is extremely rare he wants me to be retested after being tested twice. I have POTS and chronic pain that goes along with EDS but I can’t get a diagnosis because my doctors won’t look at the full picture.
I've found, when showering, it helps if I eat a cup of ice beforehand. Lowers your inner temp so you don't overheat quite as quickly. I don't have to just lay down on my bathroom floor after a shower nearly as much now.
I was also misdiagnosed with “probable fibromyalgia” and had many doctors think I had an autoimmune disease that wasn’t showing up. I even had an MS scare that I’m now pretty sure is undiagnosed CCI. All forms of EDS need more recognition by doctors!
I have had so many autoimmune panels ran! It runs in my family bad and I really thought I had an autoimmune disease at first (and I do…RA-but it is pretty mild or early or what ever…I think….I attribute most of my pain to EDS because I have had pain since I was very young and only recently tested positive for RA- I think it is mostly my stiffness (especially when I first get up) and the way stronger than my “normal” level of pain on days when the pressure drops….🤔 or maybe that is the EDSH too…just progressed. When I was younger I always felt awful when it rained-mostly EXTRA fatigue and INCREASED sinus pain and pressure…now when it rains and 😫 thunders…I feel the vibrations rippling through every joint and feel like I was recently beaten with a baseball bat…plus the debilitating fatigue (about 5 times normal fatigue for me-I can’t move if my life depends on it…glad this house is all concrete and cinder blocks…hope the hurricanes continue to miss me…😳)
My medical group only does genetic testing for cancer, so even though I meet the criteria, they don't treat or diagnose EDS. Instead I have a fibromyalgia diagnosis--which they also don't treat.
@@Ginger7024 I hear you on the rain and hurricanes. Lifelong Florida girl here 🙃
@@hallmark32 I grew up with blizzards…not hurricanes…lol!
I’m beginning to think all my weird neurological shit is down to CCI and occipital neuralgia myself, I just realised how incredibly common it is for zebras
THE VALIDITY!!! Oh. My. God! I’ve been having issues for as long as I can remember. When I told my primary, he said “The people I’ve seen have it waay worse than you do, so I don’t think you have it.” After a trip to the ER by ambulance just yesterday, the doc said, “Your eyes aren’t translucent so you don’t have it.” ARE YOU FRICKIN’ SERIOUS?!
Oof why do people invalidate our experiences like this!
I've never seen eye problems listed as a symptom of hEDS. Is it one of the other types? I don't know where doctors have gotten this stereotype that you must have eye issues.
@@EjayT06 : I was diagnosed with G-HSD, but very likely have hEDS. (I suspect I was misdiagnosed.) Anyway, my eye doctor was the first one to mention EDS to me, because my eye muscles are highly unstable and cause all kinds of pain and problems with acquiring and maintaining focus. I get a lot of blurred and doubled vision in additional to the eye pain and headaches. Glasses do not correct this, though they can help to magnify things so I don’t struggle quite so much (and also correct for my astigmatism). I went through vision therapy to help me try to strengthen my control over the muscles, but it’s a daily, ongoing process for me, and is only going to get worse with age. (My brain has also learned to try to compensate for the doubled vision with alternating suppression…its rather fascinating and highly annoying at the same time. LoL) This has been going on for about 30 years (I’m almost 40), and multiple eye doctors missed it until I was evaluated by this eye doctor a few years ago (a pediatric optometrist and vision therapy specialist). Eye issues can definitely be an hEDS symptom…you just don’t hear about it mentioned as much.
It’s so annoying when people ask you to “prove” my symptoms to them (example: asking me to show them that my thumb can dislocate). That’s like me asking you to prove to me you can take your eyeball out. Don’t do it. It’s not a good idea 😆 and yes, some people truly can take their eyeballs out, but you don’t need to prove it to me. Keep that in there buddy.
TOTALLY!!!!! And LOL to the eye example 😂 so true
happens to me all the time and I hate it!
When they do that to me, I do put on a show to prove it. I bend a finger greater than 90 degrees - my middle one.
I had a disability doctor ask me to dislocate my shoulder.
I call them “party tricks” I say I’m sorry I don’t do party tricks.
Getting a palliative care doctor to help me manage my conditions has helped in many ways including being taken seriously. I recommend every try to get palliative care if they can. It doesn’t mean end of life care. It means having a chronic diagnosis that is progressive. They help me with my meds- palliative care has different rules for prescribing pain relief and they help to figure out what help I can get to live the best life that I can with hypermobile Ehlers-Danlos Syndrome.
Palliative definitely helps, and I've had the same experience with doctors taking me more seriously once they found out I was under palliative care! We have a high doctor turnover rate here and before palliative there was a lot of disruptions in my medications and sometimes it meant being taken off meds to retry meds I've already tried that failed or wasn't adequate in order to "requalify" for the meds they took me off of in the first place. Now it's a lot less stressful whenever I get a letter telling me this doctor or that doctor has left and now I have a new one.
Thank you will look into them.
My doctor told me: "Yeah, you might have EDS, but there's nothing we can do, so we won't give you a diagnosis".... Talking about people thinking 'it's not a big deal'.
Dr Mike, you should have asked someone with Eds the symptoms, or pain. Overlooked until I was 59.I have chronic pain, in addition to psoriatic arthritis, osteoarthritis, urinary issues, dizziness at times, discussing POTS with my pmd. I’m tired. I’ve been able to walk 1296 steps today🙌🏻🙌🏻🙌🏻 though it’s not much, it’s 3 x what I was doing.
It would be great if both hypermobility and EDS were talked about more so people (esp doctors) understood better. I'm hypermobile, not EDS, and I deal with enough chronic pain myself. Having awareness and physical therapy as a kid would def have helped. I can only imagine how much worse EDS can be.
Many consider generalised joint Hypermobility to be same as HEDS
@@TheMazinoz It isn't the same though. hEDS includes hypermobility but also a bunch of other signs, symptoms, and issues. hEDS is a very specific diagnosis, while generalized joint hypermobility is not. Joint hypermobility is also much more common than hEDS.
@@mxngos7493 They have made HEDS criteria very strict recently for genetic research purposes. However Brad Tinkle, Howard Levy and Castori and others believe that clinically generalised joint Hypermobility and HEDS are the same thing . Even Beighton said difference was subtle and based on stretchy skin. This is now a minor non essential diagnostic criteria.
Thank you for this! I just FINALLY got DXd, and I’m 45! I’ve had chronic pain for 30+ years. We need more people to talk about chronic pain, and the need for medication to control not being a character flaw or automatically be addiction!
The first video I watched of him he talking about a patient he saw that day he thought bad eds and it blew my mind. Honestly any doctor knowing what eds even is sounds crazy to me from my experience lol.
OMG I don't know your channel or anything but I'm SO stoked to see someone else with hEDS specifically is on TH-cam! I'm so blown away! My main symptom is my ribs won't stay in place and it's quite painful. Since I've gotten used to most of the pain it's not horrible daily anymore but it is still definitely awful on a consistent basis. I finally got diagnosed after 8 years which I actually feel lucky knowing that a lot of people took much longer than that....I say 8 years because that's when I was actively looking for a diagnosis.
I am a genetic counselor, welcome to the profession! EDS is a matter of great discussion in genetics because hypermobility is common in the general population, but also because hEDS doesn't have a genetic test. I am subscribing to hear your perspective as you move through various rotations and especially when you are in the general genetics clinics where they see patients with this.
How do you get diagnosed (or not) with EDS if there's not a test?
I was diagnosed with EDS when I was 20. My mom was diagnosed by the same doctor at the same time as me. I told my family and best friend and none of them believed me. They all called me a hypochondriac. It’s very discouraging. I really enjoyed your video!
I was told that there was no way I could possibly have EDS because you need to have a gene mutation. (I have hEDS so there is no known gene). I was also told that my dysautonomia and vasovagal syncope was imaginary and I was doing it for attention. He reffered me to a psychiatrist to "cure" me and when I walked out of his room I was infuriated and in tears. It's disgusting the abuse we have to cope with from society. You are an inspiration and always keep me staying positive. x
I fall in the latter category for hEDS. I rarely, if ever, had sprains or dislocations (that were not on purpose). I knew I was double-jointed, but NONE of my doctors ever brought up EDS. Hell. I found out about it last year through a friend online. I said I was hypermobile and they asked if I had hEDS. To which I responded with "what is that??". They explained it to me a bit, and actually linked my one of your videos! It was after that that all of my symptoms and stuff started to make sense. For the first time in my life, I didn't feel like I was making this all up. I actually had a doctor tell my mom, while I was in the room! That I was making up pain for attention. I was like, 12 or 13 I believe. I am so grateful for my friend, and I am so pissed at how atrocious the health'care' industry is. (I live in the U.S.)
Thank you so much for speaking up about it and using this platform to raise awareness. I love being able to share videos like this with my family so they can better understand me. Thank you so much. Sending love and well wishes. I hope you have a low-pain and high spoon day!!
Four people in my family have this disease, including me, and it is difficult to live with. strength and courage to those who have it too. take care of yourself. 💕
I was diagnosed at the age of 5, i was so lucky to have doctors that understood and ever since it's just been worse. I've been really hurt by others thinking that it's just "normal" amounts of pain. It's always downplayed by others. I subluxate my joints all the time, i cannot write for long, And i have trouble breathing a lot. I'm 16, i need aid for walking and it's mentally damaging for me when others tell me "you're fine", "get over it". I'm always in pain, i can barely walk. And whenever i use aid i get questioned that if I actually need it. So i tend to not use it anymore and be in pain. And collapse sometimes due to it. Just in general, i feel stigmatized for my own condition. Because nobody gets how painful it is for me. I genuinely hope the condition becomes more well known.
Izzy, Great information! Thank you
I’ve had symptoms since I was a baby and my mother was told I was a “high maintenance baby”. Then fast forward and here we are diagnosis of hEDS, Lupus, RA, and Celiac. Told I probably have POTS and Sjogrens too.
If I had been diagnosed earlier there’s so much more I could’ve done to take care of myself. One physician said oh she’s just got a weak constitution, another oh she’s a klutz, and one more “you’ve got IBS tend to that and you’re fine!” 🤨
Drs, PAs, NPs, and RNs literally roll their eyes and actually document lower pain scores than what I tell them. I have had chronic pain for so long that I’m not presenting like someone that has a high pain level. I have a BSN and know the difference on the pain scale. And yes I’ve been repeatedly diagnosed with Fibromyalgia but the meds thrown towards have done nothing for this chronic pain. Medical professionals definitely need to know that just like there is a big range of presentation for Autism Spectrum Disoder, there is a vast array of presentation of EDS!
Agree 100%
Just found your channel. Love how you articulate in this video.
Wishing for it to be talked about factually and not just talked about. I wasn't diagnosed until I figured it out myself and sought out a proper diagnosis. I was labeled a drug seeker, liar, and more. I'm glad EDS is getting more awareness. It is very damaging when it's not correct info. That leads to even more people disbelieving what we actually experience.
I am dealing with that still. I literally can not find anyone that has the skills and willing to look at my case to diagnosis me. On Medici and the only clinic I might be able to get a appointment with won't take that for payment. As someone who is on snaps and GA, the 700$ cash cost per visit it out of my price range. With my medical history ( currently 55 ) spread across 17 states, putting the childhood records that do exist together to show my history of dealing with EDS is basically impossible. And my normal " doctor " simply thinks I'm making it up or am a hypochondriac.
I literally got into fights with both my mom and my dad about how it’s all in my head and I’m using having EDS as an excuse. I was recently diagnosed and was hoping for their support. Thank god I have my loving boyfriend and bio mom
I have EDS Type III, I have POTS, and I was also misdiagnosed as well. I had a debilitating headache for seven years (and still have one), and was misdiagnosed with Occipital Neuralgia. I was eventually diagnosed with Intracranial Hypertension (and now have 2 VP Shunts and a Stent to help) which helped a lot. I have chronic pain as well in my joins and digestive system, but nothing that's unbearable. Thank you so much for talking about this, and I 100% agree with everything you said.
i was initially misdiagnosed with 2 autoimmune diseases and deep down I knew that was wrong but i needed to advocate for myself more & pursue other dr's opinions- i did. a doctor fired me as a patient for that (his ego was hurt) but i will never regret it bc it led to correct diagnosis
I was misdiagnosed as RA despite negative tests
I'm waiting on a diagnosis for tax reasons but my mom and aunt are both trying to get diagnosis! It's so good to see content relating to this! It's nice to have people (other than my mom) who know what its like to suddenly flip an ankle while walking, or to just have random pain.
Its too bad Doctor Mike only showed extreme cases. I know my mom had a hard time even getting passed the first specialist because she couldn't bend far enough (she has arthritis). Who knew the fact having no ligaments left in your ankles could come in handy?
So lucky I have a doctor aware of my issues, AKA hypermobility pretty much everywhere (fingers, shoulders, hips, ankles, etc.), and really supporting in my health.
I am curious … what does the diagnosis do for taxes?
I totally agree with what you said at the end with EDS not being taken seriously. Even after going to doctors and getting diagnosed, my mom still thought that I was a hypochondriac and continues to fight me when I say I need something (eg mobility aids). I was talking to my dad about this one day (he has fibro) and he said to me that when injuries and pain happens frequently in a person, there becomes this sense of “well can’t you just suck it up?” It’s especially hard to hear knowing that myself and many other people with chronic illness actually have the highest pain tolerances and are oftentimes in way more pain than a regular person. Thank you for making these videos Izzy and bringing awareness and educating people about EDS, along with showing other people with EDS that we are not alone.
I really appreciate this comment because everything you're saying holds so true for many people. I'm sorry that your mom fights you on some of the things that would be really helpful for you - i think many people don't realize that just because you can physically continue on without xyz doesn't mean that thing wouldnt be very helpful.
I was the opposite and fought my mom to not get me braces because "there's nothing wrong with me". Like this was when I was 13-16. Then my 20s hit me like a truck and looking back I'm like how did no one notice all my joint problems even if I didn't complain of pain regularly. I was also told it was growing pains so frequently growing up I just started to ignore it ☠️
I also have EDS. The pain is beyond real, and now one could understand. Unless they have been where we are. Hard to tell one pain from another. I was finally diagnosed at 45. I saw many doctors that told me to see a psychiatrist. They didn't even catch the chronic Lyme. I even told these doctors that I have many close family members with hEDS. So much time wasted. My daughter's diagnosis came at just a short time ago, at 18, they decided she's at least hypermobile.
I was diagnosed with JHS (joint hyper mobility syndrome), and no one ever even thought to check me for EDS until I went to see a heart doctor for an entirely different reason. I don’t have EDS, but it’s crazy to me how overlooked hyper mobility EDS is.
Hey, I just wanted to say a huge thank you that your still making videos ❤️ I got my diagnosis two years ago finally at 23/24 because of you, I came across one of your videos about pain and I had never heard about the condition, I started looking into it and within a few months I got a diagnosis, (hsd/heds and pots) I found a support group, a rheumatologist and my day to day life is so much easier now, I think there’s a huge possibility I wouldn’t have ever learned about eds without you!
Thank you!
*Love and hugs from Ireland*
Thanks for creating this video
Thank you so much….. We just started the diagnostic process, and the doctor was very quick to downplay, very demoralizing. Thanks, you make a difference.
Also i 100% agree with you where you say about the seriousness of eds, I've had alot of people compare their issues to mine in a sense of them saying 'oh well you can't be that bad then' so much more needs to be said and done about EDS x
I love that I stumbled upon this fellow EDSer
Loved the fact that you talked about how long diagnosis takes. I've had hypermobile fingers along with knee pain for years and years, and now that I finally have an HSD diagnosis, which I couldn't find in any research for my symptoms prior to diagnosis, I'm hoping to at least test for EDS. We'll see how it goes, luckily I'm still a teen, and, even though it takes a while, will be able to get into genetic testing before to long. Or at least get solid answers before I'm an adult. Anyway, thanks.
I'm crying while I'm watching this. So much of my life is being explained and validated. So many things I didn't know were connected to each other. So many things I didn't know was abnormal. So many things that I've had a hard time explaining to others. A lifetime of all kinds of things being "all in my head", as I get progressively worse. I'm reading the comment section and my entire life is here. Thank you so much.
Well Done! Excellent Work. I am 47yrs old and starting my electric wheelchair journy now.
This is such an informative video, I was misdiagnosed with arthritis at 18 months old and I just lived my life with that diagnosis & brushed off pain & joint issues as arthritis. When I was pregnant with my daughter (2 years ago) my body literally just started falling apart & I ended up seeing a physiotherapist who first mentioned EDS, and said I was one of the most hypermobile patients he had ever had, two years of back and forth with my GP and they gave referred me to rheumatology for an official diagnosis. Probably gonna be waiting over a year for the appointment though 😅
As a physical therapist student, in my experience pain is often talked about but because it's such a complex symptom lots of people seem to disregard it as nothing special. l've had several patients with some sort of chronic pain and it's a bitch to learn to live with, it's great you put such emphasis on the pain.
Thanks for sharing, and helping raise awareness! I agree with you that chronic pain is an important aspect to include when describing EDS. An orthopedic doctor once said my daughter couldn't have EDS because there's no pain with eds. She was misdiagnosed twice, first with epilepsy, then psychological. She had mild symptoms at 9, severe by 11. Didn't get properly diagnosed until 13.
I love that you brought up the pain. I think it’s getting more recognised that EDS causes pain. My girlfriends family had to Google EDS because they hadn’t really heard of it the results they had found say it causes chronic pain. So that was good
As a fellow EDSer it's really good to see this kind of video. I didn't get dx until I was 35 and I also have POTS and fybromyalgia, IBS, vestibular migraine, nerve compression and some other stuff. I have been told it's in my head, I'm addicted to pain killers and/or I'm depressed. I was depressed but that was a consequence of no dx, not the cause of my issues. Really good video. I hope yr doing ok.
Those are ALL EDS issues!
I have EDS type 3 & classic, MCAS & am undergoing test's for POTS, Thank you for helping bring our condition out of the shadows, it seems to me EDS is far more understood in the US than it is here in the UK, most medical personal I meet have never heard of it x
omg. im dead. i had wished so much that people knew more about this condition. NONE of the GPs that I have been to ever thought to check me for this. I feel traumatised from the lack of support from doctors about my pain...... im devistated by the fact I have been treated like crap by adults ... i just didnt know my parents didnt know .. the symptoms vary so much that any doctor ive met have been quick dismissing my concerns, I AM SHOOK. there needs to be more people like u.... now I know what my youtube channel is going to be about ..... im thinking... should i go to a specialist ???
Oh my gosh...this is the first time I'm hearing of this and I'm going to talk to my dr. Immediately. This describes soooo much of what I've gone through in my 31 years on this earth. I literally thought I was crazy...I was too poor to go to the doctor (still am) but I have experienced the dislocations since I was 4 and the tendonitis has started frequently surfacing. My ankles are constantly injured...I have sooo many GI issues...omg...I'm not saying in any way I have it, but this is so eye opening.
I haven't yet been diagnosed but I'm pretty sure I have hEDS. I understand how you feel, it can cause many complications and annoyances. Thanks for the video raising awareness of this syndrome.
I'm so glad to hear that your gastroparesis is a lot better now.
I just stumbled upon your channel, and I really appreciate your content and wish my doctors did as much research as you do!!
My hand surgeon is certain that I have a collagen disorder after 3 failed cubital tunnel surgeries in one elbow because my fascial sling that secures my nerve just stretches out no matter how tightly he secures it. But now I’m in diagnosis limbo because I meet the clinical criteria for cEDS (maybe clEDS? I don’t have bad hypertrophic scarring, but I am the queen of blowing surgical sites open weeks after surgery…), my surgeon thinks I have it, but diagnosing it is technically outside his area of expertise, my PCP has never heard of EDS, and I don’t live near a geneticist.
new to your channel - great video! just a note about another thing that dr mike missed -- there are many GI effects beyond gastropareisis associated with hEDS, and these can be quite extreme -- patients can need tubefeed or even total parenteral nutrition. it's another factor that tends to be so dismissed and overlooked by doctors, so IMO it's important to mention.
thanks for spreading good info about EDS! :)
It is so difficult when medical professionals dismiss you. The amount of chronic pain I have is insane. Why you might ask? Well because I went undiagnosed for 31 yrs and I'm an end of life care cna for 12 yrs. Yes I worked 6 months of the pandemic and straight burned out. My shoulders oh my shoulders. Worst. The insane part is I've gotten dismissed in hospitals I've previously worked at. I'm really glad you put this information out here. I too searched so hard for an answer and I'm one of rare people who have genetic implications at birth and documentation of some things my mom found getting karyotyped. Still went until I was 31 to have the real answer. The amount of damage I've done is great let's just say. It's not my fault either. So many are led to believe it's their fault and drs know better. Not in every case is what eds'ers learn.
I so relate…I am going to be 51 next month…my past medical history is MOSTLY unremarkable…other than a ruptured ectopic pregnancy (5 years after my tubes were tied…um…fragile internal organs…YAY!), dot surgery on both feet because my toes were curled down (to the point I was starting to walk on my toe nails on the 3 and 4 th toe of both feet) and an acute case of anterior uveitis…and millions of sinus, bladder, & ear infections, several tooth abscesses-a few ganglion that I had removed-um…sinus surgery for a deviated septum and um, 🙄😳 several joint injuries. Oh, and I have seen so many specialists….GI, neurologist, ENTs, chiropractors, nephrologists etc for various health issues. I learned not to complain to anyone (but my mother can always tell when I am in pain or not feeling well) because I would emotionally break when someone would respond “you are always sick or hurt or complaining about something different-you are so young-you better toughen up-you will know real pain when you are MY age.” Newsflash! I smiled during child birth because I had been having debilitating period cramps since I was 13 that were worse than any contraction I had during labor! Tell me again how wimpy I am? I thought I was wimpy-no one else that I knew rolled into a ball unable to breath with actual tears from period cramp (endometriosis-that wasn’t diagnosed until after my ruptured tubal pregnancy) So, we develop a very high pain tolerance from an early age and learn to suffer quietly-or at least I did…between dismissive doctors, killing yourself to try to keep up with normal healthy people in a work environment and raise a family…My body is like one of those old plastic games from the 70s with the numbers 1-9 that you were supposed to manipulate on the grid to put in order now at 51 years old…but my pieces are not numbered so my bones twist in and out of place-but I am never really sure where they belong anyways-So I just try to coax them back towards the direction they are coming from and hope for the best…hey vertebrae…go back to the left where you came from…Shoulder…really not sure where you belong but it is not here! Try going back and upwards a bit….Wrist! How many times have I told you not to twist and fold in towards forearm??!!! It is kind of funny to me rereading this because I have had so many different issues throughout my life that I can never remember them all. I almost forgot about my foot surgery…after suffering from insane foot pain every single day from my teens until mid 30s -but that pain was resolved 15+ years ago (THANK YOU DR MOFFIT!!) and replaced by so many issues of varying degrees of pain- I think I purposely block out so many memories because the are frequently tainted with pain or illness…or both. I had a bladder infection from about 12-13 years old until I figured out that the symptoms returned when I drank a glass of Mountain Dew…I would take around of antibiotics and feel better…within 2-6 weeks I would have at least one glass of it (I loved it-but tried to eat and drink healthy) and then the symptoms would come right back-mostly extreme fatigue- UTI on top of normal EDS fatigue, I guess. It took a long time for me to notice the correlation…I still miss the taste of it almost 30 years later- but haven’t touched it (or any other yellow soda-as I learned it is the yellow 5 in it…and they are putting it in almost everything now…) knowing the added misery it causes…I could write a book if it was so painful to touch my iPad screen to type….🤣🤣🤣
I have no idea why my iPad decided to cross out part of rambling…🤣🤣🤣 It has never done that to me before!
Wow! @Ginger Ann. This is amazing! You sound so so similar but also different. Like you took some of thoughts right out of my head haha! I too pushed to keep up with healthy people as my career will never be anything but healthcare even though it takes a ridiculous toll on my body. I've learned alot of these correlations as well overtime. I thought it odd both my pregnancies were wonderful and I could handle the pain like nothing because my everyday life is much worse pain. Everyone thought I was nuts because I hardly complained about "pregnancy pain" but everything else seemed to bother me alot more. My nephew has pretty severe eye complications including uveitis and brittle corneas. He is diagnosed with JRA and is 17 yrs old and has musculoskeletal involvement as well. He's very tall compared to me as I'm under 5ft but I also was diagnosed as child with JRA. I'm the only one in my family who has an eds diagnosis and actual clinical one with correlating genetic testing. I think these conversations and getting our stories out there put puzzle pieces together for many of us. Thank you for sharing. Also with electronics specifically I have alot of difficulty using them and they don't always work like they are supposed to and glitch or malfunction. It's interesting to note I have a diagnosis of lown ganong levine syndrome which effects heart conduction and electrical pathways. Just a theory this may be why lights flash electronics don't work right and I shock everyone and everything with seeing visible sparks sometimes even. So strange we all are. ♡♡♡♡🦓
Also I have no idea how to "love" comments so I'm limited to liking them apparently only 😂 or I'd love them all.
@@libbywiskowski9618 😂🤣🤣🤣 It took me a long time to figure it out! Touch “like” and keep your finger in place and other emotions should pop up for you to choose from!
I've always hyper extended my knees since I started walking and standing. I learned not to hyper extend them while walking but I could never get them to stop while standing. Got diagnosed a few weeks ago at 23 and bought myself some better knee braces to get through until PT and needless to say, I was hyper extending my knees for 22 years because they're unstable AF. Also I just noticed them subluxing this past year but I honestly ignored my joint problems, like chronically spraining my ankles since I was like 13 until I tore a tendon in the one ankle away at 18. Tbh keep spreading awareness. I want less children and young adults and their parents to feel like shit just because doctors are ignorant of connective tissue disorders!
My knees are unstable too! They buckle when I’m standing relatively still. I now get some dislocations too.
I live in a tiny village in Sweden and we have a small doctors clinic here and when I came in to talk about my chronic pain and possibly having fibromyalgia they wanted to check if I could possibly have EDS because of all my pain. But I'm not hyper mobile or have stretchy skin or anything like that all I have is the pain so i have fibro but I thought it was nice that they wanted to rule it out as a possibility even since often I get dismissed when I go to the doctor.. I dont know how many times I have heard eeh.. it's nothing it's just your anxiety or it's because of your autism and it's really great to have such a good doctors office here where they actually listen and take you seriously!
Agree with you... Completely with the pain side..
So i am on at the towards the end of my EDS diagnosis journey (30 years long, only one specialist in my state who can diagnose) and i can totally relate to how long it takes to diagnose this condition. You name the joint issue, i have done it, from sprains all the way through to ligamental ruptures - my GP definitely knows it is genetic, but he is not familiar with EDS, and the last specialist i went to couldn't tell between marfans and EDS. Keep up the good work, great video.
I totally wish I learned about my diagnosis sooner, because No there isn't a cure BUT I could have used preventive measures!
Yeah, and it's also a relief to finally know what's wrong, and that it's not only in our head, plus you get to learn to accept it instead of wondering all the time
My GP told me that I shouldn’t bother trying to get a formal diagnosis because “you can’t cure it anyway so what’s the point”
OMG I have that and I never knew it was a disease!!!! I just thought I was just extra flexible!!!! I get dizzy when I get up from standing or even just walking but I thought it was because I skipped a meal or something. Thanks for this video. I learned so much!!!!
I was getting tired of seeing so many different Drs telling me it's all in my head. I finally found a Dr that took me seriously and had me in to a genetics Dr in 2 months and had a confirmation in one visit. Now to find a Dr to take my pain seriously. I'm 32 I found out at age 29.
It took me +25 years to get diagnosed. I’ve been accused of being a hypochondriac and mentally ill. It was Hell. Then it was fibromyalgia, later it was rheumatoid arthritis, but it never showed in my bloodwork. Only when I was in rehabilitation I finally had a doc that connected all the dots and H-EDS explained all my issues, including the issues I had internally with colon and my womanly parts. I was sent to the KG and got his diagnosis confirmed. I am in al hellish amount of chronic (nerve) pain daily.
I just wanted to say thank you for your videos. you might not be able to read comments much anymore, but your videos have really helped me. I'm not diagnosed yet with eds, I do think I have it but it isn't easy to find a geneticist in my area. however, I never would have heard of pots if not for your videos I don't think. this is something I'm fairly sure I have. when I did an at home tilt table test I went from 89 bpm, to 132 when I stood, 124 after standing for 5 minutes and then by the time I was close to 10 minutes, I had reached 150 and had to lay down because I felt so sick. I might not have ever thought to question it and may have never talked to thr doctor about it, if not for these videos, and now I'm waiting to do bloodwork to rule out anemia and stuff first.
so anyways. thank you
.
I’m so happy to hear that my videos helped you talk about this with the doctor!!! I really hope they can figure out if it’s pots, anemia, or EDS!
My first symptom was at 9 years old and I got my diagnosis the 7th of this month, which makes it 20 years of dealing with symptoms. But it only took 1.5 of actively seeking answers to get the diagnosis so I feel VERY lucky in that sense.
The misdiagnosis struggle is so real! I had that for YEARS before diagnosis, as I’m 41 and docs had no idea wth was wrong with me. I also agree that it’s a huge deal, kind of like people saying they have PTSD when they have no idea what it is. Thank you Izzy!
Every time I have a symptom pop up or I faint or I’m unresponsive, I go to my doctor. I get the bloodwork, the MRIs, the x-rays, the nerve reaction test… EVERYTHING. COMES. BACK. NORMAL. How I feel every day is not normal! The ones who’ve actually heard of it say I don’t have it because my symptoms aren’t severe or I don’t present one out the many there are. It makes me want to stop trying to figure it out 😖
I've been sick since I remember. When I was 11 years old I begun having several muscular pain, which increase when I was 18, along other different symptoms. Almost everybody treats me like a hypochondriac, especially doctor (well, and family and friends). At 22 I was told I had fibromyalgia. Now at 36 they think I might have EDS, which it would explain my comorbidity.
Thanks so much for talking about this. I feel a little more accompany ❤
Glad I stumbled upon your channel! I have an undiagnosed hypermobility disorder (No doctor wants to officially diagnose me with anything but I'm suspecting EDS) and my charts just say 'extreme hypermobility' or 'generic hypermobility syndrome'. I've been fighting for a diagnosis since I was 16 and I'm 24 now, still no progress lol
and ohh boy on your advil comment, I feel it. I have to take WAY TOO MUCH OTC pain medication to manage my pain. I also have an unspecified chest deformity (I suspect pectus excavatum) and the amount of doctors that have told me PE does not and should not cause pain or discomfort is so frustrating and defeating. Health care for people like me needs to change drastically :/
I just wrote a paper for an article project I had to do for my statistics class and based it off of the increased prevalence of comorbid GI, cardiovascular, nervous, and allergic conditions within the EDS population. Helping spread awareness wherever. Plus, it was easy to do a project based off something I’m interested in, especially since my degree an associate of science/PTA.
Its so interesting that you mentioned exhaustion while showering and its connection to POTS. I have EDS and I almost exclusively shower sitting down because I find it to exhausting. I've just chalked it up "another random annoyance because of EDS", so its nice to hear a possible reason for it happening. EDS is so challenging to, especially because its such a wide spectrum; its like the worst game of connect the dots.
Yep, your brain sure gets a work out with it, and dealing with gaslighting as well!
Happy to find you. Hopefully having someone like you getting into genetics will make it easier for EDS and other rare types. My rheumatologist tried to have three different genetics departments see me and all three rejected me :/ All we wanted to do was make sure I didn’t have the more dangerous kinds.
My cousin has vascular and my other cousin and aunt have hEDS I had hip replacements at 29 and the doctors don’t know why I developed Spurs or why my joints were so unstable. Then it all started to pile on. Chronic pain, subluxations from sleeping wrong, driving, siting in a stool too high, my leg will fall out of it’s joint. No autoimmune they can fine etcetc My carpal tunnel repair failed- they had to do it again and do a graft -.-
Hypermobile joints, every single one of them. TMJ, muscles hurting all of the time just from being tense to keep it all together. How else do we hold ourselves together? Our muscles turn themselves on to give stability :( my knee cap naturally takes a winger to the right any time I move my knee-my trochlear groove developed too shallow because of the instability :(
I hope you can find a geneticist who will take you soon! I'm sorry they are turning you down - I think it's important for anyone who wants to get tested to have proper access and support to do so
When I first was diagnosed with EDS I didn't have a whole lot of pain or extreme symptoms, so I told my friends it wasn't a big deal. Now that I'm 25 and have been to multiple medical specialists who all say my issues stem from my EDS, I realize that I was totally wrong as a kid
So interesting that this showed up in my recommendations. October 2019 I was diagnosed with a bicuspid aortic valve, an aortic aneurysm, and multi valvular heart disease. I did a bunch of research into it and found they can have connections to EDS. I went to my doctor and said “here’s a long list of symptoms I have that overlap with EDS, I’d like to know if I have it.” She said she didn’t know enough about it and would refer me to a specialist. Next time I saw her she said “I decided not to send you to a specialist since you probably don’t have it.” I never asked why she thought that. But it was interesting that she went from “I know nothing about it” to confident that I don’t have it.
I also go told by a reumatologist that eye problems are a required symptom for EDS a few months ago! When I tried to explain that it doesn't necessarily occur in every type, he said: yeah but there is no point in being diagnosed anyway because there is no cure. Like what?! -_-
It's freaking annoying. I found out about EDS in 2011 and it fit me, my mom and my brother. We all have different problems. My mom and brother could have vascular type because they both have had problems with their organs. I have had no problems but I have the dislocations (born with hip dysplasia, dislocated elbow when I was 13 and my shoulder when I was 31). So 2011 I didn't have insurance but my mom did. She talked to her allergist about it and he said yes, you're right, you probably do have that. She went to a rheumatologist and he said the same thing to her that your doctor did. What's the point of having the diagnose if it can't be cured. LIKE WTF. Do doctors say that about type 1 diabetes? There's no cure so it doesn't matter. No, of course not. The person gets put on insulin for the rest of their life. Then I got insurance and my rheumatologist said he had only seen 1 pt with it and that I didn't have it because of how rare it is but that I do have hypermobility. Since then, my mom has had eye problems. Her retina detached. Now that we all know we have it, we can tell future doctors about it so that problems can hopefully be prevented. I had to have my wisdom taken out, I told the dentist and they used a block on my jaw to prevent it from dislocating and were aware of the possibility that the anesthesia could wear off or cause problems. Luckily it did not.
My doctor says something similar. He says I most likely have have some type of EDS and that he constantly puts in my notes that all my symptoms are consistent with a CT. But, he still thinks going to a geneticist for a dx is a waste of time because they can't actually do anything for it.
When I search up symptoms I have never seen eye problems being one of them. What actually is supposed to be the problem?
Being diagnosed is still good for mental health and starting your journey to accept it tho
@@EjayT06 totaleyecare.com/ocular-complications-ehlers-danlos-syndrome/
I'm put off going to the drs because of the wide variety of symtoms eds has and I fear just being fobbed off again. I'm 55!
I made a list of all my issues and took it to my GP, then I had a phone consultation and straight away he said he could understand why I was thinking this could be heds given my history and said he would write a referral then and there. Such utter relief as I thought he would just think I was overthinking things....... 1st step done!
I have finally had my consultation and he confirmed I was hypermobile, had fibromyalgia and chronic fatigue (not to mention the other 25 health issues which he said I'd just had a run of bad luck) All the things I already knew! When I asked about Ed's he said I didn't have any of the serious types so it wasnt worth taking it further as there is no treatment. Felt let down....
I agree Chronic pain was my big thing also constant sprains. It took so so so so long to be diagnosis HSD. got to back to Rheumatologist after being diagnosed hearing loss as that might change my diagnosis to hEDS. I got a 2ndry fibromyalgia diagnosis with my hsd. All due to pain and chronic fatigue. We need more awareness and understanding on the spectrum of diagnoses.
Thirty years to get diagnosed from when we first started looking because of the extreme pain I was having in my joints. Within a few years, the frequent sprains and sublexations started.
10 years and im finally not in a small town with little doctors, I am hoping I can finally get diagnosed. Im pretty sure its EDS I subluxate my shoulders daily, my ankles pop in an out as I walk, and something happened to my hips that has been requiring a brace to be able to get around. Seriously considering crutches. And on top of that my limbs fall asleep if anything even slightly presses on them. So I'm just walking around with constant pins and needles and the inability to feel my fingers or toes. I just want an answer and then I could justify to myself and my insurance my need for mobility aids and accomodations at work so I can finally get a job
TH-cam, WHY WAS THIS ON MY RECOMMENDED? I HAVE EDS BUT HOW DID TH-cam KNOW. Great video btw-
Thank you so much for this video. Just got away from my doctors being of gastrointestinal, arthritis, hip dysplasia...
Hospital thought I was nuts
Really bad for me
Nice to see 👀
I've not been diagnosed, but I've done the criterion on myself & I think I meet it. I took it to my primary doc to get a diagnosis & he said "well you have to go to a geneticist & that's expensive. You don't want to do that." I hate the bruising off & downplaying...
After watching a lot of videos about this and comparing to my own experiences, I strongly suspect I have EDS. Unfortunately, I can't get diagnosed with... anything, anymore. A lot of doctors have written off my symptoms as exaggerations and told me to get more exercise or drink more water or fix my diet (without bothering to read the journal I always bring that shows what my diet is), but one in particular has completely screwed me over. Instead of doing any kind of physical tests or even just telling me to exercise more after I listed off all of my issues, they had me take a psychological test. Which diagnosed me with dependency disorder because I show "an abnormally high concern for my health". Like yeah, obviously I have an abnormally high concern for my health! I'm in CONSTANT PAIN! But now every time I go to a doctor, they see that "diagnosis" and tell me that my symptoms aren't real at all.
New diagnosed here. Always been hypermobile and feeling palpitations and bowel problems. I have always been told that it was anxiety. 15 years later I finally can put a diagnostic name down.
Thank you. I agree that EDS should not be thrown around so easily. It’s amazing how long it takes to be diagnosed. My symptoms started as a child with constant injuries to my ankles and knees. I had the growing pains and could do all the parlor tricks. When finally I was diagnosed I had suffered for years in pain. At 52 I finally have a diagnosis but the damage has been done.
Well, I am advocating for my daughter and so sad as my initial searches here in Canada...and apparently there is ONE Doctor in the whole country?!! and they aren't taking patients anymore for HEDS - I am losing it. I wish she could go to the Mayo clinic. I have to figure out how to find her someone who can diagnose her. You are doing a great service here, thank you. I'm all over your vids rn, hopefully it's not a bother - it's been a LONG journey to even HEAR about these things. She has been sorrily misdiagnosed, sent to somatic symptom classes by a psychiatrist, so many of the teens there, feel that they know their symptoms and pain are real and Drs are telling them it's in their heads and medicating them. I cannot believe this stuff. It's shocking.
There is an EDS clinic in Toronto.
I have EDS but wasn’t diagnosed until I was a adult. Originally played a lot of sports but gave it up as a result of multiple injuries especially dislocated joints and chronic pain. My mom who I inherited it from ended up with open heart surgery
Hello Izzy!
You might want to know that Dr Peter Osborne mentioned and gave some advice about EDS on his most recent live video too on Monday. Its the one about Protein and protein deficiency. You will probably have to watch the whole video to find the bits on EDS. He likes to answer health questions too and it seems some of his viewers have EDS.
I am that random person who is just weirdly hypermobile. And what you and others in the comments are describing sounds horrible. I have a friend with EDS and watching her go through so much pain is just heartbreaking, I can’t even begin to imagine what it’s like for her. I just wish I could take it all away for her
Thank you for this! My whole life I was told I have "loose limbs" because I was hypermobile and something was always dislocating. I'm used to the dislocations now and they usually don't hurt. They tend to be more annoying than anything. Physical therapy didn't really do anything for it. I was diagnosed with fibromyalgia about 5 years ago because I have chronic pain. I attributed my pain to that and the many many many sports injuries I've had. I have NEVER been able to tolerate heat. I moved to a hot climate and people kept saying I would get used to it but all that happened was I was sick the whole time I lived there. This seems like it might be a more appropriate diagnosis. Not sure if it will make a difference regarding my treatment though.
just got diagnosed with hypermobile eds this week as a 17 y/o male. I had been to over 15 doctor's appointments with no answers (near ~20 vials of bloodwork and everything coming back negative/fine) since April but I finally got a diagnosis out of town. My first symptoms for me were fatigue/tiredness/weakness and constant leg pain in my thighs that started in April of this year. Since then I have kept those symptoms 24/7 on top of lack of appetite to no appetite, shortness of breath due to anxiety, headaches, and trouble sleeping. Was very amazed when I was with the doctor and doing the hypermobile physical exam (the thing starts with a Be- or something that they do for the mobility i can't remember) but I scored a 9/9 on top of the stretch marks, very tight hamstrings and being flat-footed. All crazy stuff but I'm fortunate to finally have answers. At first, the doctors where very certain it was mono and if not that thyroid and if not that Lymes and if not that covid and it keeps going- but all came back negative. It's a process for sure. I'm actively looking for all the info I can on this and this helps a lot! thank you :D
9:50-10:50 THANK YOU
I was given a bit of info along with my diagnosis that is very interesting. If you'd like some of the info they gave me let me know! (its like a ~15page journal book of a bunch of studies and information that's been really helpful for me)
I have soft skin, hypermobile joints, and heart problems. First symptoms were around 8 as well, but it was actually my femur that subluxated. The teachers actually harassed me about my doctors note saying I couldn't participate in gym class because of the pain, but I eventually just started doing gym anyway because of their comments over several months. This obviously didn't help my joints. I was very lucky to happen across a nurse online when I was about 15 or 16 that knew about EDS. He convinced me to bring it up to my doctor and mention EDS specifically since it still isn't that well known, and I eventually was sent to someone else that gave me an "unofficial" diagnosis. I fall into 8 out of 9 categories because my skin isn't super stretchy anymore (I damaged my skin repeatedly which lessened the elasticity) and since it's so new, you have to fit all of them. The doctor said I had it but it technically wasn't official because of that one skin part. Went to physical therapy for it which somewhat helped but it's been several months and the effects didn't last. My shoulders subluxate very often and even my ribs sometimes (which temporarily paralyzes me and makes it hard to breathe) but my dad also grew up with the same problems so he helps me "put them back" when it hurts.
I'm glad more people are learning about it because it sounds insane when I tell my friends, "oh, I'm not supposed to lift more than 20 pounds or else my shoulders could dislocate themselves." I am constantly in pain, but luckily, it stays at a 2-3 out of 10 most of the time. Others are not as fortunate.
On a slightly funny side note, I just got a cat recently and he also has loose knees (I can turn my knees backwards), has anxiety (I have G.A.D), hates most fishy things (I dislike most fish dishes and am allergic to shellfish), and watches TV with me/watches me play games. He's basically me as a cat... which is cute but also concerning so I'm also monitoring his heart rate when I play with him (one of my issues is tachycardia; my heart rate sometimes goes up to 150 bpm which can cause me to feel ill or faint).
it’s interesting to hear about EDS as i have Marfan’s Syndrome (also a connective tissue disorder) and it’s crazy how similar yet different CTDs are!!
I love how you put that!! They are so similar yet so different.
Often called cousin syndromes. I've laughed when Dr's suggested that as a possible diagnosis for me in the past because I'm the family giant at 5' 4".
Took me 22 years to have medical professional mention EDS - I am not officially diagnosed as I am awaiting genetic testing (the wait list here is 1-3 years to get in) so it may be more like 25 years before the official diagnosis. Though I am being treated by a physiotherapist who specializes in EDS now which has been a great help.
Yes this is my life please share a video about pain reliving techniques, I have the vascular symptoms also 😭
Yep, I was seeking a diagnosis for a good 12 years, I spent a lot of time with my dr thinking I had Lupus, MS and Fibro, where I do have a quadruple ANA and Hashimotos. When I had my thyroid removed, it was discovered that it had a breakdown of form, it was slimy. No kidding! It wasn’t until I was doing more research that I realized all my symptoms fell under the category of dysautonomia. A Nuclear stress test showed tachycardia! So a year or so later I finally ended up at a geneticist. Crazy journey!
I have heds and when I was younger I was misdiagnosed with hypermobile syndrome which doesnt usually put u in a wheelchair for months at at a time
It is helpful to know that there are other people in the world with this I am 13 and have been suffering with this since I was 6-7
Is that something common? I had that happen a couple of years ago, I was in so much pain and couldn't walk without falling and had to be prescribed a wheelchair.
I have EDS type 1 I'm 49 yrs old, luckily my father has it and I was diagnosed at birth. The pain started at 10 and yes it gets worse. I now have a wheelchair to go out. Also I'm in Australia and you say EDS half the doctors go "what" the ones that do know it are fascinated and get other doctors to come see. I'm also allergic to opioids so that's fun xxx good luck
Fellow Aussie!
I've had symptoms since 10-11 of EDS. Got the diagnosis of hEDS this year at 28.
Doctors pretty much brushed off the hyper-mobility in the past with "that's weird" until I did a telehealth with an American doctor and they suggested I raise EDS with my GP.. and even the specialist said "lots of people have it, gymnasts usually do! It's not that bad"
They've flat out refused to test for any other types despite symptoms suggesting I've got classic or another form that results in extremely loose hips in particular (sinus tachy, gastroporesis, lipedema and vascular insufficiency being the big secondarys)
Even Australian "specialists" in genetic conditions seem extremely uneducated about this condition which is scary!
@@paigeveenstra9128Another Aussie here. Can confirm 99% of even specialists here know buggerall about HEDS. Im beginning to feel like I'm becoming a world expert on it just to argue to get basic medical care.