The best thing about getting properly diagnosed with EDS is knowing what you have. It deflects the "all in your head" gas lighting from doctors, and opens the door to better treatment of the various symptoms that EDS can cause. EDS researchers are constantly thinking outside the box and coming up with good treatment options. Medications such as beta blockers, Clonidine, Guanfacine, Mestinon, and Ivabradine have had a lot of success in managing EDS dysautonomia, for example. Additionally, knowing you have EDS is important to other doctors - surgeons need to know that your skin can tear more easily, and dentists need to know that you're likely resistant to local anesthetic due to your EDS. Being properly diagnosed with EDS is empowering for a patient, and leads to better overall medical care.
Oh God I hate the dentist... he does not believe the anastethic didn't work. I slapped him one time because it hurt so bad. I also had an ingrown toenail once that would not sedate. They tried with 13 needles giving me more anesthetic but it just didn't do anything. I had to go for complete anesthetic... at first they didn't want to do it because they only did that with scared children and people with a mental disability like down syndrome.
@@mandy1667 Find a different dentist. You've been officially diagnosed as having Ehlers Danlos syndrome? If so, prior to dental visits, inform the dentist that for medical liability reasons, you need to disclose that you have a medical condition that affects dental and oral health, called Ehlers Danlos syndrome. There are additional issues beyond local anesthetic that dentists need to be mindful of, such as increased risk of TMJ dislocation. Have these resources available to give the dentist: - ehlers-danlos.com/wp-content/uploads/MRGDentistryS.pdf - www.hypermobility.org/dental-health Extra resources on EDS and JHS patients being resistant to local anesthetic can be found here: www.ncbi.nlm.nih.gov/pmc/articles/PMC6834718/ www.nature.com/articles/s41415-020-2019-3 (The whopping 88% number of EDS patients who report resistance to local anesthetic was large enough to surprise me!) @Izzy - An EDS video about dental and oral health would be awesome! :)
I have not been properly diagnosed with anything but pots & mvp. They have me on anxiety medicine as well as a Midodrine just started these & my bp keeps going to low
I am in a bad place today mentally I want to be able to get up & go. I just sit here & watch the day go by. I know get a hobby to do while you have to sit I have some. I got a veiled chameleon ( actually kindly crazy seems they are exactly like pots patients.) made his enclosure. Now I’m back to nothing. It takes me every bit of 6 hours just to get ready , like shower & dry my hair if I can get that done. I’m 46 in August & I was told by a cardiologist the 1 st time when I was 44. So does this mean, from what I’ve looked up pots patients have the life expectancy of 50. Do you know if this is true?
@@emilyloveday2407 The life expectancy of 50 refers to vascular type EDS. A related disorder called Loeys-Dietz might also have lowered life expectancy. Pretty much all of the other EDS types don't tend to have reduced life expectancy. POTS itself doesn't reduce life expectancy, so don't worry about that. The underlying cause of the POTS could reduce life expectancy, but you'd need a doctor to get to the bottom of what causes your POTS. In your other posts you had mention swollen hands, which doesn't quite fit. Hopefully you can see a rheumatologist and a cardiologist.
I'm a 47 year old woman, and about 4 months ago I finally figured I have EDS, and while the symptoms were relatively mild before (no prolapses or dislocations), they were definitely there since I was literally a baby: my mother always bitterly complained that she couldn't breast feed me because I would inevitably start vomiting, and until I was 2 years old, it was practically impossible to feed me while I was awake. About seven years ago, around the time I turned 40, all those symptoms started getting worse and worse, to the point where last summer I could barely get out of bed. And like I said, it was shortly after that that I realized I have EDS. Now, here comes the important part: after I figured what was the problem, I started wondering why suddenly I started getting worse, after an entire life with relatively mild symptoms. And suddenly it occurred to me that it could have something to do with hormones. After all, as I get closer and closer to menopause, my hormones are progressively dwindling. Well, long story short: I started early Hormone Replacement Therapy (HRT), basically just started taking the contraceptive pill to supplement my hormones and stabilize them. And lo and behind, I am doing much better. Not perfect yet, but improving little by little. So for any women out there getting worse symptoms around their 40s, you might want to look into that.
wow what does the vomiting as an infant have to do with EDS? My mother couldnt even breastfeed me. and i couldnt keep down any formula. the only thing i could keep down was boiled condensed milk with the skin skimmed off the top. i was born doing a split and my legs were stuck up for a while. and i just never slept as an infant. i never thought about these being a sign of EDS. I still don't have an official diagnosis yet. its been almost a year of doctors and tests. but my symptoms are worsening and lately ive been getting capillary bursts in my hands that are so incredibly painful! i am 38. definitely feeling the "getting worse as i approach 40"
You may have Mast cell activation syndrome (MCAS) which is also linked to hEDS. Hormones can be triggers for mast cell activation and vomiting as an infant is common. Look for. Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant Anne Maitland - "Understanding Mast Cell Activation in EDS & HDS"
I got my official HEDS diagnosis!!!! If it wasn’t for your RUclips channel and your incredibly helpful videos I probably would have waited many more years before seeing a specialist rheumatologist. Thank you Izzy ❤️
Hypermobility on it's own is definitely not enough for a diagnosis, but make sure to look into all the comorbidities and side effects, and be honest with yourself. I am diagnosed with HEDS and my brother is more hypermobile than me, but that's it, he's perfectly healthy. It took me a long time to get diagnosed because I didn't understand that my constellation of symptoms weren't just "complaints," but valid pieces of information that doctors need to make an informed diagnosis.
For me, the diagnosis helped because I had a therapist misdiagnose me with hypochondria.. and not for general anxiety about my symptoms, for the literal symptoms of EDS.
@@Dr.WinAye chronic pain in joints, ligaments and muscles…. Frequent subluxations, hyper mobility, pots, digestive issues, teeth issues and mobile teeth, elastic skin that feels very soft, breathing difficulty and sleep apnea.
5:35 - It would be good to elaborate that the 14 different types of EDS can have varying degrees of hypermobility. For example, the hypermobility of vascular type EDS tends to be confined to just the fingers and toes. Someone with vEDS might not be hypermobile in their larger joints (hips, shoulders, knees, elbows) at all.
LOL I LOVE that you're saying this because I had a section literally talking about this and I either deleted it all together or put it in my file for part 2
this is really good to know I am hypermobile everywhere and I suspect I have vEDS as well as my sister because we both had congenital club foot and she has scoliosis but I was worried about my sister getting a diagnosis because she is not hyper mobile anywhere but her toes and fingers
@@malanamarie5206 Hopefully you can both get in to see a knowledgeable geneticist who can screen you for that and any differential diagnoses, as there are some funky non-EDS collagen disorders out there like Marfan, Loeys-Dietz, Stickler, Marshall, and others to sort through, which may or may not fit your family history. The most helpful would be if you and your sister could have a joint appointment so that the geneticist could check you both at the same time. Also bring a full family history to document that issues run in your family. If you do have vEDS, it's best to get diagnosed sooner than later, as delayed diagnosis is dangerous. rarediseases.info.nih.gov/diseases/2082/vascular-ehlers-danlos-syndrome
@@Dulcimerist my second cousin has eds I am already set to get a genetic test so I assume if anything comes back that I do have a type of Eds it will be easier for my sister to get a diagnosis thanks for the info!!
@@malanamarie5206 Keep in mind that if the genetic test for any type of EDS comes back negative, you could still have hypermobile type EDS (hEDS). hEDS is the most common of the 14 different EDS types, but its gene or genes have not been identified. Therefore, there is no genetic test for hEDS. Diagnosis for that is made by using these criteria: www.ehlers-danlos.com/heds-diagnostic-checklist/
A professor who has EDS first tipped me off to the fact that I have a ton of symptoms. After a horrible rheumatologist tried to tell me my pain was my own fault, I went to a physical therapy screening. The therapist had seen a bunch of patients with EDS and after testing my joints and asking about my pain, she was immediately sure I have EDS. She was so surprised at how much it affected my gait; all the therapists in the clinic had never seen a gait quite like mine. Apparently I've been hyperextending my knees for YEARS while walking.
You may have Mast Cell Activation Syndrome (MCAS) which is linked to hEDS and can cause a ton of symptoms and triggers often similar to those we see in ME/CFS. Comorbidities diagnoses linked to mast cell activation is hEDS, Allergy, Asthma, POTS, IBS, Fibromyalgia, Endometriosis, ADHD, Multiple Chemical Sensitivity, Interstitial cystitis (IC), Migraines, Temporomandibular joint disorder (TMJ), Small fiber neuropathy (SFN), Restless legs syndrome (RLS), Autism Spectrum Disorder (ASD), Trigeminal Neuralgia, Neurologic and Psychiatric Symptoms (NPS) to mention a few.
I understand the stigma and hesitance surrounding self-diagnosis, but I will continue to say I have EDS. My doctors are all 99.9% sure that I have it, but can't officially diagnose me because they aren't specialists. The waitlist for the specialist is 2 years, I've been misdiagnosed 4 times and this is the only condition that aligns with every single one of my symptoms. A diagnosis is absolutely a privilege, my doctors say that I have EDS, but still refuse to give me an official Dx. I think self-diagnosis can be harmful, but we know our bodies better than our doctors do lmao edit: my replies keep being removed but i ended up getting my diagnosis :]
Hey girl! I’ve dealt with issues my whole life, and especially the past two years due to IIH. Long story short, I stumbled across EDS as I was researching for an upcoming surgery. You were one of my first sources of information. Fast forward a few months, and I’ve been diagnosed with HEDS. Thanks for making me feel a little less alone, and thanks for helping me get answers about my body so that I can be treated properly ❤️❤️❤️
I thought I'd share this. Three of my best friends throughout my life got diagnosed with EDS or had a family member with EDS, then learned that I have EDS so showed me how stretchy their skin is and how hypermobile their joints are (plus their history of allergies) and then two other people I worked in a lab with have EDS. While I agree that birds of a feather flock together, I think a lot of people just aren't getting diagnosed or misdiagnosed. I think people who are 40+ likely have misdiagnosis because they didn't look for EDS often in the past.
Absolutely. I think awareness is increasing. I was a student case study when first diagnosed over 40 years ago, because they hadn't had many patients with it or been diagnosed with it. Mind you I accidentally handed them the diagnosis by doing a 180 degree leg raise and saying how if it was RA I should be in a wheelchair because of the pain I was in and crippled but I was still very flexible. I had not heard of Ehlers Danlos or Hypermobility syndrome. I worked as a microbiologist. I think we tend towards more sedentary occupations because of pain, though I had finished my BSc before HEDS joint issues arose. But had fatigue, fainting.
This is such a fantastic and comprehensive guide, Izzy! Getting diagnosed with EDS can be a huge challenge. Here in the UK a lot of us end up in a sort of 'grey area' where if hEDS is suspected we aren't offered genetic testing or sometimes even denied rheumatology appointments, instead just given physio. I'm so glad you mentioned how important a diagnosis can be to patients because it really can be life-changing in terms of validation or access to support. But also, super tricky to get there for some of us!
hi, i know you commented this a year ago but i’m also from the UK and wondering where i go from being told: yes i am hyper mobile and that my pain is caused by muscle weakness (doesn’t make sense since i did gymnastics and hockey). that was from the NHS and it just doesn’t feel like a fair answer to my problems!!
@@supergrass_dr Pauline Ho is the U.K. EDS specialist. She’s based in Manchester. You can see her privately at spire hospital or through the nhs at a considerable lengthy wait.
Thank you for videos! My 10 year old daughter was diagnosed with hEDS today. I found out about EDS from you on TikTok. It made so much sense. Our family dr said he’s never seen anyone with EDS and it was impossible for her to have it. I went behind his back and took her to a rheumatologist. She was diagnosed right away! I can’t wait to see what the GP has to say about it! 😂
One GP told me flat out I was a drug seeking security fraudster - decades after I had been diagnosed by a Prof Medicine. I almost fainted! Next visit I brought in a copy of a letter from my hospital medical records to my referring GP from decades ago. I'm not anal retentive, but had had so many issues with GP's I got my medical records.
Ive been struggling with my EDS for going on 29 years now though, it was properly diagnosed, the doctor I saw at the time didnt wanna put it in my records for fear of me having trouble finding a job thatll hire me; that decision of his is now really biting my ass trying to get treatment and get onto disability. My new primary is has been trying to find places with geneticists that I can see but none of them will see anyone over 18 so for them Im about a decade to late to treat. Thanks to this video though I learned of other places to try and am now just need to get some new authorizations for two Orthopedic doctors! And I did ask multiple times if theyll see me despite my age and they both see adult patients. So heres to hoping to finally getting some help! Thank you so much for making this video
A mythical Zeba unicorn here- hEDS, MCAS, POTS, hypoglycemia, Castrochondritis, dystonia and Cranialcervical Instability. Didn’t get diagnosed till last year (2021) when I was 37. I was diagnosed clinically by my PCP and confirmed my my Neurologist. In pain 24/7 but being on Low Dose Naltrexone, CBD/THC (3:1) and Penetrex cream; this combo has made a huge difference. I wear a neck collar, (hard and soft) ankle & wrist stabilizers, leg compressions and arm stalkings/gloves, custom Orthopaedic shoe inserts, posture corrector and sometimes need to use a cane. And I go to intensive PT 2 times per week for over 2 1/2 hours each time. This combo has made life more bare able but I’m still pretty miserable and hurt more often than not. I get terrible flare ups that can last from a day or two to weeks. And sometimes I get them back to back. But, if I wasn’t doing this things, I can’t even imagine what life would be like! My major symptoms didn’t start making themselves known till Feb 2021 and it was from sudden chest wall pain. Then the Mast Cells started acting up. I’m on a low histamine diet and take a DAO enzyme supplement with each meal and am now able to eat pretty much anything I want. But there are a few things that I just can’t tolerate like avocados, spaghetti/pizza sauces and high amounts of sugar like a slice of cake. I am also on full disability. Very blessed to have a wonderful support system and my husband fights this battle with me! I hope by sharing all of this, it can help someone else also. You’re not alone!!
seeing your videos is what made me push my doctors to look for a real answer rather than just brushing me off. I'm now in the process of seeing if I have hEDS and am getting more support so thank you :)
My Neurologist was the one who diagnosed me with my EDS. He knows about the different types of EDS. Mine is the classical type. Type two. I thank you for all your information and help, Izzy! Your an inspiration to me! And I say that because you have helped me learn more about EDS. I am hoping to go see a orthopedic doctor soon.
Do you mind me asking what the neurologist was specifically seeing you for and how they diagnosed you with EDS? I suspect I may have some form of EDS. I have a neurologist appt coming up bc of nerve pain on top of my feet and chronic migraines for at least 2 decades. Medication hasn't been helping either of them. I've also suspected POTS or something similar (tachycardia and fainting or near-fainting being a major issue)... I'm actually exhausted just thinking about the list of issues that affect nearly every part/ system of my body. I need to get in touch with a rheumatologist, geneticist, and pain management doc. My quality of life is in the gutter.
my rheumatologist diagnosed me with hypermobility spectrum disorder and refused to diagnose me with eds as she said i had to see a geneticist to get a diagnosis but she told me it wasn’t necessary bc there is no treatment 😀 gr8
There's no cure, but there's a wide array of treatments available for the various effects of EDS. Some doctors are simply too lazy to learn. Hopefully you can find a good doctor who can diagnose and treat you. You can find a doctor through the Ehlers Danlos Society website.
My rheumatologist as well but he just said I was hypermobile and didn't try anything apart from pt (which made me worse) and then told me that I just had to learn to deal with it (im 16)
This makes me feel not so alone. I was so excited when I got in to see a rheumatologist after an 8-month wait, thinking THIS would be the specialist to finally give me a diagnosis where everyone else had failed, only be to be told that yes, I did indeed have hypermobility, but she couldn't give me an EDS diagnosis--I would have to see a geneticist for that. There's no genetic test for hEDS!
I really appreciate your channel! I was diagnosed in 2015 with EDS Hypermobility and POTS after a seizure and 7 years of different doctors, specialists, and tests. Every doctor new something was wrong they just couldn't figure out what is was. I'm usually the first EDS patient any of my doctors and dentists have ever had outside of my doctors at Stanford where I was diagnosed. I've only met 1 person face-to-face with EDS which has been a little challenging because for people without EDS you really can't understand what an EDS patient goes through day to day with just the simplest of tasks like standing up or taking a step and passing out or dislocating something. I'm soon to be 50 and I've been told that I'm doing well being diagnosed later in life so to speak which makes me laugh because I've literally had a headache since 10/2007, which I was hospitalized for, that no one can get to break or get go away so with all the headache treatment I undergo on a regular basis, braces on both legs, and wrists when needed, my neck, fingers etc., falling, and dropping stuff on the regular I'm thankful because it could be worse and it's not...even on my worst day it could always be worse! Your channel is refreshing and informitive and I thank you for that!!!
I was diagnosed later in life as well. Sorry you have bad headaches. Migraines often plague those of us who have EDS. Have they tried you on a beta blocker, Clonidine, or Guanfacine to prevent migraines? Those medications can treat the migraines, dysautonomia/POTS, and anxiety which often plague people with EDS. Additionally Clonidine and Guanfacine can treat sleep issues, and Clonidine has analgesic properties which can help to offset EDS pain. One medication to treat multiple issues means fewer medications overall.
Wow, someone else who understands daily headaches! I haven't gone a day without 1 for well over a decade, and they often turn into migraines. Propanolol helped for a bit (It was amazing bc I had forgotten what it felt like to NOT have a headache every day). Butalbitol works sometimes. Nothing else even comes close to helping, and most opiate pain meds (other than IV Morphine at the ER) actually make it worse. The Ibuprofen/Tylenol cocktail doesn't do anything. Torodal is useless. Immitrex, Treximet, Maxalt, Qulipta and others haven't helped. I'm so sorry. It's a miserable way to live- if you can even call it "living".
@@JustJ-Mein 1998 I had a migraine for 10 months since then I e had so many constant things b3 years constant in my shoulders armpits neurologist says it's migraine without headache?
ahhh I'm SO happy to hear that he listened and believed you! Yes, so many other docs think it's probably the exact same thing too but they are separating it for the meantime to try to find a gene mutation
@@IzzyKDNA it be interesting in next 10 years to find out if they will be relumped together, separate branches of eds or remain same for investigating..unfortunately 10yrs is not much time in medicine it seams for reaserch by 1 or more companies then has to be excepted by the intl standards for use in that countries reaserch
@@ServiceDogRosie The HEDGE project is in the process of gathering DNA samples from 1000+ people who have hEDS, in order to do a complete gene sequencing. Within the next two years, they hope to identify specific genes which might be responsible for hEDS. Within that large group of hEDS people, perhaps they'll be able to split hEDS into several subgroups, according to the specific gene that's affected. Even better, they hope to develop specific genetic tests to screen for hEDS, which is the only type of EDS that doesn't currently have a genetic test.
My primary care doctor doesn't seem to realize that my hypermobility is probably linked to my ongoing stomach problems. I showed her how I can turn my elbow 180 degrees and I'm hypermobile in all my joints but she didn't think anything of it at all. Acted like that was normal. I also bruise so easily, get dizzy on occasion, have those papules on my heels, my hair is falling out like crazy, symptoms of MCAS, react to too much stuff. Ten pounds underweight at the moment. I also have Asperger's..was diagnosed with that in June.
There's a higher incidence of Asperger's amongst people who have EDS. You have a compelling case for EDS. Check out all of these articles, and at least print out the EDS Gastrointestinal article for your doctor: www.ehlers-danlos.com/2017-eds-classification-non-experts/
@@Dulcimerist My weird medical issues have been driving my PCP nuts so she finally gave me a referral to 2 different doctors. One was an "integrative" doctor that my PCP trusts. This doctor said I had EDS & MCAS & POTS. But she could not diagnose me but gave me referrals (but more important is she would explain the issues to my PCP). The second Dr I saw today, a neurologist. And he actually diagnosed me with EDS! And while I don't have diagnosis yet for POTS or MCAS he sneakily asked me questions about them like "do you get dizzy when you stand up". And he understood the sensitivities too! So I finally got my diagnosis and a referral to a geneticist too! 😀
Same as mine sure I have Asperger's to father had CFS mother father both hypomobile CPP 25 years now fybro symptoms OCD from 5 are you in UK trying get tested thought s are with you starting ldn soon
i recently saw a rheumatologist to try to get a diagnosis and he spent 45 minutes focusing on my flat feet and told me if i just fix my feet all my problems will go away 🙃
Did they do their job and run you through the hEDS criteria checklist? www.ehlers-danlos.com/heds-diagnostic-checklist/ If not, print it out and bring it to your next appointment. Also check out Izzy's video that visually runs through the hEDS criteria. Many doctors are clueless about EDS, so we have to be our own advocates for our healthcare.
@@Dulcimerist nope! im gonna have a lovely chat with my primary who refered me cause this man was off his rocker (walking 15 miles a week will fix my hips coming out of socket, im too young to be in pain but heres heavy muscle relaxers, etc.)
@@jessicabohl933 Muscle relaxers are dangerous for people with EDS! They cause decreased muscle tone, increasing joint instability and increasing the risk of subluxations and dislocations after taking them. Muscle relaxers also aggravate the proprioception issues that EDS people often have, increasing the risks of falls and other accidents which could cause subluxations, dislocations, or other injuries. Walking 15 miles a week won't fix your hips from coming out of socket, and could put you at risk for further injury. You need a referral to physical therapy or some sort of exercise program to safely increase muscle mass to help stabilize your hips. Furthermore, the "you're too young to be in pain" thing is pure bullshit, and is one of the most insulting, insensitive things someone could ever tell someone who has a chronic pain condition such as EDS! If I were in your shoes, I would be tempted to notify my insurance company that this incompetent rheumatologist failed to provide the medical care that you were sent there for, and challenge the bill; but I don't know what your official referral to the rheumatologist said.
@@Dulcimerist i havent talked to my primary yet sadly i have tricare so i have to go where they send me and yes i took one dose and my pain increased ten fold so ive just kinda egnored them thankfully i dont have full dislocations but thats why he blew off the doctors concerns
@@jessicabohl933 Sorry you're stuck with Tricare. That system is a nightmare for anyone who has a rare or uncommon medical condition, since it's likely that whomever you get sent to will be unfamiliar with the condition. EDS is especially tough, due to the confusion of 14 different types of EDS, type classifications and diagnostic criteria being updated in 2017, and so many doctors having outdated or erroneous knowledge of EDS. This increases the risk of misdiagnosis or missed diagnosis, improper treatment, and malpractice. The rheumatologist focused on your flat feet, acknowledged your hip subluxations, and attempted to address your chronic pain - all of which are signs and symptoms of EDS, yet he didn't bother to run you through the Beighton hypermobility assessment and hEDS diagnostic criteria. Your rheumatologist visit would be like if a patient was referred to be evaluated for diabetes, and the doctor didn't run a blood glucose test and then gave the patient a sack full of candy and cupcakes. I'm really curious if you meet enough of the hEDS criteria for a diagnosis. If you look up above here in Izzy's video description, the first link she lists is an excellent video with detailed visuals of how to run through the hEDS diagnostic criteria. You can follow along with the hEDS checklist from my previous link. If you do meet enough of the criteria to qualify, firmly and insistently advocate for yourself to be diagnosed. The rheumatologist obviously lacked the training and competence to diagnose you, and even gave you advice and medication which could worsen your condition and put your overall health and well-being at risk. Your primary care physician should be able to diagnose you if you have hEDS. The diagnostic criteria are straightforward and easy to understand. I had a similar experience with a rheumatologist in 1996, which caused my hEDS diagnosis to be delayed until 2013. The result of that delay cost so much time, energy, and money as my other doctors looked elsewhere for answers; while also delaying treatment, allowing my EDS symptoms to worsen, and putting my overall health and well-being at risk. Hopefully your primary care physician can jump in there and get the job done so that you don't have to go through what I did.
Just found your RUclips channel and wow I just wanted to say thank you! My daughter is 2 years old and currently under investigations in Australia for EDS. Getting doctors to believe there was something was going on with her was so difficult. "Babies are flexible" is often what I get told repeatedly, so frustrating. She was born with bilateral hip dysplasia requiring a brace for 8 weeks and she has dysphasia requiring thickened fluids and a soft diet, she has special orthopaedic shoes and has recently been found to have both ankles with fractures in them bearing in mind she is still walking and running round. I just wanted to thank you for your educational videos. We have seen a neurologist, metabolic specialist, physiotherapy, orthopaedic surgeon and have a paediatrician we have her first genetics appointment coming up
Good luck with the geneticist. It could be another hypermobility syndrome like Osteogenesis imperfecta, Marfans, or a mitochondrial myopathy. But a geneticist sounds like the right place to be, as they diagnose all these and various EDS. I saw one decades ago but was completely dismissed. I saw one at Brisbane Womens Hospital Clinical Genetics a few years ago who knew all about it and the various issues like dysautonomia, gynaecology, etc. Things have definitely improved, but you'll still find turkeys with their heads in a certain place.
I'm 38 years old, I was diagnosed 10 years ago by Dr. Tinkle, and since then it has progressed. If asked then do I think it's progressive I would have said no, symptoms are pretty steady as far as comorbidities. I have had progression in GI problems, for example. GI started with abdominal pain, spastic vomiting, and gastroparesis from early childhood, developed IBD and ulcerative colitis in 2018 and in 2021(would have been 2020) I was diagnosed with Crohns disease. You may also come to a point where there are no more treatment options. I have had EVERY possible treatment for my headaches over the course of 35 years and there are no more treatments left. My last option is a coordinated effort between my group of physicians to try to manage the pain. I enjoy your videos and feel they are very helpful. I never post on EDS pages. I only do patient to patient interactions through my doctors, but I thought a couple of examples of what EDS may look like 10 years after diagnosis with aggressive treatment might help someone. Keep up the excellent work❤
i love your info, it really helps me study. You are beautiful and smart, keep doing what you’re doing. I don’t have EDS as far as I know, but you really help me think. Love you and keep up the good work❤️❤️
I like how you encourage a full spectrum of managing pain. I'd like to see a video on how chronic pain affects mental health. Seems like a full spectrum approach vs complete pharmacologic reliance is the best method. I have some chronic issues and have learned a lot from your channel.
I just made a geneticist appointment after being on a wait list for almost three years lol! Your channel has been helpful especially while I’ve been waiting
Just starting the process of gettign the diagnosis for HEDS. My dr looked at me show her the beighton score and ordered the paperwork from the clinic to do the preassessement. It's an up to 24mth waitlist and 4.5hr drive to the only clinic in the entire country here in Canada. Hoping this will help with things even if only to know why I'm experiencing these symptoms for pretty much all my life and was gaslight by all previous drs as being nothing. Thankful for your channel and the info that helps me understand better
Thank you so much for this video!! After my second knee surgery (a TTO and MPFL reconstruction), my physical therapist strongly believing I have EDS, being diagnosed with hypermobility and POTS (along with many other issues), and many medical mysteries (that could be due to EDS) I have decided (with the help with my mom, she also shows symptoms) to seek a diagnosis. It’s all very overwhelming but this is very helpful!!
Glad that your gastroenterologist knew enough about EDS to be able to keep an eye out for it! Do you have gastroparesis, IBS-C, GERD, or other gut motility issues which can be associated with EDS?
The way my Dr put it was that the EDS itself does not get worse but the symptoms do. The EDS is in your genetics, it does not change. The long term effects that it has on your body can get worse, just like normal stress on a non EDS body.
I’m at a really frustrating point in my diagnosis right now. Have had an orthopedist refer me to genetics for it, only to have genetics refer me to a few other doctors and be super vague about why, which was a problem because I don’t want to hop around to different doctors, because when I’ve done that in the past, they think I’m faking. I just don’t know where to go and it’s been months cause of COVID.
Sounds like they're passing you around like a hot potato. That happened to me as well. What types of specialists have they passed you around to? Do you meet these official hEDS criteria?: www.ehlers-danlos.com/heds-diagnostic-checklist/ Bring that to pretty much any doctor, and they can diagnose you with these official diagnostic criteria.
It is really frustrating because they don’t know the answer so they assume your faking or make you feel as though you are. I’m right there with you. I was finally diagnosed with POTS at the age of 45. Having many nights in the hospital only to be told nothing is wrong or I have a bug. I have severe pots attacks with severe anxiety now something else is wrong with my joints. I dk if I’m dying soon but I do feel like my heart is slowing down more & more & nobody is listening or nobody cares.
@@emilyloveday2407 Sorry you're experiencing this. Have they tried you on a beta blocker, Clonidine, or Guanfacine to treat your anxiety and POTS? Those medications can be very effective at treating both, especially in hypermobile disorders such as EDS. I highly recommend the webinars "When is Anxiety Not Anxiety: Psychiatric Misdiagnoses in EDS" by Dr. Alan Pocinki and also "All in Your Head: The Problem of Psychogenic Diagnosis for EDS" by Dr. Diane O'Leary, both of which are posted on RUclips.
Annika , do you live in Sweden ? If so ... You have to pull everything by you self , the doctors here don't know anything about eds... I have learned my doctor's about eds more then anybody
I’m lucky to have my Neurologist and his knowledge of EDS, and I didn’t have to be bounced around from places to places. He also takes care of my Epilepsy.
Thank you so much for helping me with these videos, it’s been a blessing trying to understand what’s going on. I recently went to a geneticist and he thinks I probably have heds but I may have mosaic forms of fragile x and klinefelters syndrome as well that are contributing to my joint laxity.
i'm glad to know i have eds and have an explanation for my symptoms ..it only took 53 yrs .. i was tired of seeing dr.'s that look at you like you're seeing them because you want pain meds .. i don't want pain meds i want help .. i'm not a drug addict .. i don't even take tylenol for a headache
So I have a question for the EDS people. I just got diagnosed with POTS. And looking through the criteria I highly suspect I have EDS as well. Down to hypermobility, shortened palette in my mouth, unexplained stretch marks, stretchy skin, chronic daily pain. Just a lot of stuff. The only thing is, my joints don't fully dislocate. They more just kinda... Stop working, and drop me. Like my hips, knees, ankles. My wrists will do it sometimes. They don't dislocate. They just kinda dont work and I fall. Like ill roll my ankles all the time. They just arn't sturdy. Is the dislocation thing like.... Important? Like is it most likely not EDS if the joints don't fully dislocate? Also I am seeing a Physiologist about it all and have a doctor, so don't worry I'm not trying to self diagnose or anything.
I badly broke my leg and ankle 16months ago. I explained am always falling, straining etc myself. Or just have really bad pain joints. So was sent rheumatologist and straight knew I had Hypermobility EDS, as I have lots of the connected conditions. But my genetics person for neurofibromatosis type 1 doesn't believe in Hypermobility EDS which annoyed me.. Am waiting for my POTS testing, MCAS aswell. Xx
That geneticist is incorrect. Believing that a real medical condition that's recognized by the medical and scientific community doesn't exist could result in malpractice. Perhaps the geneticist is simply behind the times, and still believes that hypermobile type is still classified as "type 3" EDS? The medical and scientific community did away with the numbered type system for EDS, and revised it all in 2017.
Thanks Izzy! Love your vids, as always. Genetic testing is so hard, if not impossible, to procure in my state, which is nuts. I did pass the main criterion needed to receive my diagnosis, but it’s still difficult when a nurse or doctor looks at your chart and doesn’t even know what EDS is. ☹️
I run into this as well. That's why it's so important for EDS patients to empower themselves with knowledge so that they can advocate for themselves and bring more awareness and education to healthcare workers.
I have momentairaly seen 2 rheumatologist and one internist... the internist found nothing and the rheumathologist send me to an hyper mobility clinic..... but I'm still on the waiting list, I've been on the list for 2 months now and hope I will soon be able to see that docter. I had to drop out of medical school because my symptoms just came and worsend last year when I turned 19.
I was first referred to a genetic clinic shortly before the pandemic but since I would have to travel to another state, the pandemic made things difficult :/ I am working on trying again to at least get on a wait list. I have been diagnosed with things like early osteoarthritis which make me more concerned about EDS since my initial referral so I think an evaluation is important. Thanks for this video!
See if your doctor can run you through the hEDS criteria. Although it doesn't rule out other types of EDS or other health conditions, ruling out the most common type of EDS might give you some piece of mind until you can see a geneticist. www.ehlers-danlos.com/heds-diagnostic-checklist/
My chiropractor diagnosed me with EDS using the Beighton scale. One thing that surprised me is that even though I can't reach my thumbs all the way to my wrist, he counted it because I was close. Was it correct for him to do that? Personally, I think EDS would explain a lot of my health challenges throughout my life, but I also don't want to incorrectly assume that I have it.
How close were you? Perhaps he didn't want you to injure yourself. Do you remember your Beighton score? If you had enough points from the other places and checked enough boxes in the second section of the hEDS hypermobility criteria, those two points weren't necessary. www.ehlers-danlos.com/heds-diagnostic-checklist/ There are a lot of critics of the Beighton, since it isn't a broad check of hypermobility. For example, the shoulders, ankles, and other key places are completely ignored.
My mom has hEDS, and after watching a bunch of your videos (and other people's) I found out I pass a lot of the criteria. I talked to my doctor about pursuing a diagnosis, and they're gonna do some tests.
Diagnosed via Rheumy and confirmed via Geneticist at age 44. Diagnosed with Lupus at 20. Reconfirmed Lupus diagnosis again at age 44. Multiple mixed connective tissue issues cEDS, Lupus and MCAS lead to further investigation where they discovered cEDS even though I had PROM with all my pregnancies. (ruptures galore) they didn't put the pieces together. I was able to have 2 children, both born premature due to PROM and both have cEDS. Oldest also has Cerebral Palsy and youngest has Lupus and Gastroparesis. I started losing abilities around age 36. Today I use an electric powered wheelchair and am in a lupus flare up. I'm 48 and live in Minnesota.
Hi! I was DX with hEDS with a Beighten Score of 8/9 by a geneticist. However, the geneticist did not run any blood test! I’d be willing to bet my insurance has something to do with it. It’s possible that many of those DX with hEDS actually have a different types but haven’t been tested. If everyone who was DX with hEDS got tested, it may be less common than current statistics suggest.
ive been diagnosed with chronic pain syndrome and my doctor is just passing off my hypermobility and subluxing of joints, i also have gi issues and pots. i havnt specifically mentioned eds but i’ve kinda hinted at my diagnosis not being right, especially as chronic pain syndrome is very frequent idiomatic and it doesn’t really make sense for me. I’m happy to have a diagnosis but i really dont think it’s the right diagnosis and i almost wish i didn’t have one yet so that i could still be getting tested instead of treated wrong.
At your next appointment, ask the doctor to run through the official hEDS diagnostic criteria with you: www.ehlers-danlos.com/heds-diagnostic-checklist/ Doctors dismissed my hypermobility for years, and without my proper hEDS diagnosis, it just wasted a lot of time and money looking elsewhere for answers. Being diagnosed with hEDS opens the door to POTS medications which work well for EDS patients; such as beta blockers, Clonidine, Guanfacine, Mestinon, and Ivabradine. Mestinon also treats the gastroparesis or IBS-C that often is caused by EDS.
@@somethingsalazar2613 I used to not be good at mentioning things to doctors, but learned that I needed to do that if I ever wanted to get better and have a better quality of life. Check out Izzy's video which visually goes though the hEDS diagnostic criteria. Some things in the criteria, such as the little white bumps on the heels, need to be seen in order to understand what to look for.
I think I have gastro paresis and EDS and the only person that is listening is my cardiologist. I was diagnosed with sinus tachycardia but he said it could be POTS. I’m on ivabradine and motilium plus other meds and they are working to an extent
I have a lot of problems with my hyper mobility. So my physical therapist suggested I try to bet tested for eds. I am only 15 so they told me I couldn't get diagnosed till I was 18. Has this happened to anyone else?
I’ve been diagnosed with POTS and Fibromyalgia, recently found out that my echocardiogram showed me developing a “leaky heart” in which my one of my hear valves has stopped closes properly. (Wasn’t there back in 2017 when I had my last echo) I’ve always have been super flexible, so are a few of the women in my family, we can twist our legs around and bend my legs so my feet face backwards. I could also put my foot flat against my face since elementary. Walking down the stairs is uncomfortable at best and at worst I’m stuck in bed. About a year ago, I got hurt on the job and the area around my gallbladder messed up and never healed. They (PC Doc) told me it must’ve been a damaged muscle, but I insisted on getting my gallbladder tested (it runs in the family), HIDA scan came back normal, but they’re wanting me to get an organ removed regardless of this. Two of my co-workers brought up EDS to me, and I always shrugged it off till I saw it pop up as a possible cause for my new little heart defect. Then I think about how my knees often pop out of place for a few days at a time, how my ankles often roll, and how I have to fix my jaw back into place after the bones start rubbing together or just don’t feel right. My PC is so dismissive, and I really don’t want to get a whole organ (a helpful seemly healthy one at that) to be removed when I already have had GI issues practically my whole life. I just want a name for what’s going on. And frankly my fiancé’s insistence to work out in the gym to have the pain go away is kind of… very annoying. I can’t even walk down the stairs without feeling like I may fall. Yet I can’t get my landlord to add in a staircase bar to help prevent any falls. It’s ridiculous, and I know having a name to my issues would help press its importance. I don’t know if I have EDS, but this whole process of clearing the confusion is such an expensive and time consuming thing. All while being pressured to make rent despite no jobs hiring for people who can’t drive, work full time, or be in hot locations without risking a fall. I’ve passed out multiple times within this year alone, and when I was working my last job (part-time) I was still getting close to passing out almost daily even with additional hydration w/electrolytes. It’s such a headache. 😓
I was diagnosed with hypermoble EDS yesterday (I thought I had it becouse my mom has it and turns out I was right). And I’m pretty out of my depth right now haha. I already have a lot going on along with the fact that I turn 18 in a few days and everything feels kinda crazy right now. I found your channel and i can’t tell you how greatfull I am to you for making these videos. It’s one thing to watch a boring science video with people who are 3x my age saying all the worst facts about what I have, and it’s another to watch a very engaging video from someone who’s lived with this and someone who is closer to my age. Thank you so much 💛💛
Sorry that you have hEDS, but glad that you got diagnosed so that you have a unifying diagnosis for the various EDS-related health issues that you have. Learning all you can about hEDS is super important, since many doctors are clueless or have erroneous knowledge of hEDS. That's why videos such as Izzy's are very important as a resource to patients and doctors. After I was diagnosed, these articles were also super helpful for my doctors and myself: www.ehlers-danlos.com/2017-eds-classification-non-experts/
Dr. James Kustow is one of many clinician-researchers who study the area; he believes there is a correlation. There’s a lengthy lecture on the subject that has been uploaded by the Ehlers Danlos Society that is pretty informative.
Yes, it is. Interestingly enough, the ADHD medications Clonidine and Guanfacine can also be effective at treating POTS. Also, check out the webinar "When is Anxiety Not Anxiety: Psychiatric Misdiagnoses in EDS" by Dr. Alan Pocinki.
@@Mojojooojo - Clonidine and Guanfacine are also often prescribed off-label to treat anxiety, sleep disorders, nerve pain, migraines, dysmenorrhea, and additional issues. They work by lowering the amount of norepinephrine in the body, which in turn calms the sympathetic nervous system and "fight or flight" panic response.
I'm not sure if the condition worsens but as you mentioned the symptoms progress. I could contort, voluntarily dislocate and do parlor tricks when I was young. Now at 62 I can barely move arthritis everywhere.
I have a rare form of EDS, TNXB with two deaths in immediate family. It’s a very hard condition to pin point and diagnose. I had so many strange symptoms that involved so many different systems in the body. It took well over 20 years to put all the pieces of the puzzle together.
Im 48 and was diagnosed in the last year. My 16 year old daughter was also diagnosed shortly after me. I also suspect my middle son of having it as well but he has less symptoms. Im pretty sure my other 2 sons dont have it. My daughter has some mild circulatory sympyoms but doesnt seem to be a major problem for her. My pots is debilitating and has gradually gotten worse over time. It is so frustrating.
Hoping you can get your POTS under control. The major medications that are often used to treat EDS POTS are beta blockers, Clonidine, Guanfacine, Mestinon, and Ivabradine. Have they tried any of those with you yet? Mestinon also treats gastroparesis and IBS-C, which is a bonus for some EDS patients.
@@Dulcimerist No, the only thing I've been on is gabapentin which helps with the bloodpressure, breathing rate, and heartrate spikes, but im weaning off of it because it was causing dips in those to occur, especially when I sleep. My O2 levels will sometimes drop as low as the low 80s, my heartrate as low as 40, my breathing rate as low as 9, and my bloodpressure drops as well.
@@SandAngels73 Gabapentin tends to cause problems for EDS patients with long term use. The weight gain from it puts more strain on joints and increases pain in the long run. Its effects as a central nervous system depressant could help reduce tachycardia, but it's more of a last resort medications for trying to manage POTS. I'm very surprised that they haven't tried any of the first line and alternate POTS medications that I mentioned. Are you being treated by a neurologist instead of a cardiologist?
@@Dulcimerist My PCP is trying to treat me but doesnt have alot of experience with EDS. This is a fairly remote area and specialists are a long ways away.
@@SandAngels73 Hoping you can dig up good research articles to help your PCP. Since you get bradycardia, I wouldn't recommend beta blockers or Ivabradine. The other medications I mentioned might be worth asking your doctor about. Do you also get digestive issues, such as gastroparesis?
I've had chronic pain and ankle pain and instability for so many years but it's gotten so much worse. I also have other symptoms of Ehlers Danlos syndrome besides though. Planning to go see my primary care physician
I get 9/9 on the beighton score (22M), and on the second part I could get anywhere between 3 and 6 depending on how generous the diagnostician is. And regarding the last point about chronic pain and instability, I don't know if I've ever dislocated anything, and I don't really know how many subluxations I've had. The only one I know for sure is my jaw. And I don't really know if my joints count as having "frank joint instability or not" despite being freakishly hypermobile in pretty much every joint in my hands especially. And I do have discomfort and mild pain in multiple joints in my body most days, but apart from my back (which doesn't count towards hEDS) I don't really have any specific joint that will hurt every day. Mostly my joints just hurt if I do specific movements, or if I use them more than usual, like my knees and ankles hurting if I go on a long walk. I'm obviously hypermobile, and it's obviously symptomatic in every body part, as well as some autonomic dysfunction like POTS among others. I tried to book an appointment for getting an hEDS diagnosis but just got the reply that a hEDS diagnosis is pointless because you can't do anything other than treating symptoms as they come, and that if I wanted I could make an appointment with a physiotherapist if I have painful joints. And the thing is I do have some pain and discomfort, but it's mostly a minor inconvenience to me, and some things I simply can't do because they lead to pain, like throwing balls, and I had to stop doing MMA due to injuries and joint inflammations, which sucks, but it doesn't really affect my normal day-to-day level of pain, and I never really feel more than inconvened by my hypermobility syndrome. None of my problems are big enough for me to care enough to go to a doctor about them, and none of them can be treated really anyway. Which kinda sucks in a way, because I really would like to have an hEDS diagnosis, as confirmation that I'm not just some hypochondriatic self-diagnostician. I'm worried about potentially having arthritis in multiple joints in just a few years, and I want to know if I have a valid reason for thinking that might happen you know? If I dance at a party until I get so much joint pain that I can barely move, I wanna be able to tell people an explanation. I wanna be able to say "i have a syndrome called hEDS" instead of having to resort to vague explanations like "I don't have an actual diagnosis or anything but I think I might have this rare condition called hEDS, so basically my joints get worn down really prematurely due to hypermobility, so basically I have the joints of a 50 year old". I feel really insecure about whether I have hEDS or not. I feel like such an impostor. On one hand I do have the full 9p beighton score, as well as a lot of typical non-joint features, I -might- fulfill the official criteria, and I do have joint pain in every part of my body, but it's just not very significant. It's not the chronic suffering I hear every hEDS influencer talking about. Pain and problems are there, so I'm not asymptomatic, but I don't think it's enough for the official criteria. On the other hand it's gotten noticably worse in the last few years, and I expect it will keep getting worse. Idk, I just feel kinda stuck.
I just don't know who to vent this to. My mother has it. I have it. She's been a single mom for a long time and I am an adult now. We both struggle a lot with health and money. It actually makes me think about how others who are healthy get to live more normal lives.
Same boat, no one wants to talk about the people (like me) who are disabled with eds and poor. If I had a family and support system people would flock to me for support, I watch it happen all the time. I have noticed that I am the black sheep of eds/connective tissue disorders because of my financial and family situation and if I speak up about it…I am always met with silence.
I discovered your videos after my pelvic floor PT started asking insightful questions taking my WHOLE medical history into consideration. In a few weeks I'm having surgery to correct one out of my three pelvic prolapses. Doctors keep looking at me strangely when they find out I've never had kids, yet my internal organs are all dislodged, to the point of needing invasive surgery. I've been misdiagnosed and disbelieved so many times, that the idea of a reason brings so much hope, even if it means chronic pain. However, I'm a little concerned that I won't be able to get a formal diagnosis from anyone. I pass Criterion 2 & 3 for hEDS, with FLYING COLORS, for so many factors that I always thought were normal. But, I don't pass the Beighton, as my hands have never been flexible, and I've stiffened up with age. My elbows regularly dislocated as a kid, and my hips/jaws/knees are frequently popping in/out, but I'm afraid I won't get anywhere because my bad joints aren't the ones considered. :D Honestly, even though I don't usually recommend self-diagnosis, the prompting from my PT and my own research in the last week has me completely convinced that I've been fighting hEDS, whether I get a professional to validate it or not. For my own sanity, Beighton or not, I'm confident. This answers so many questions. My coping line in the last few years has been that it feels like my body is systematically "falling apart," hah, and now it seems like I can identify a source that shows that my poor body really is actually falling apart, haha. I welcome any ideas or advice from anyone who can help out a sister?
At 54 I will say that while eds may not get worse, but the damage from it definitely does. We learned just a few years ago that the type we have is a defect with the cola12a1 gene plus a few other gnarly ones. If you think you have eds, try to get diagnosed.
I recently signed up for the study university of sc is doing. I really hope they find the gene for hEDS in our lifetime. Not for me but for my Children, we think my daughter who has down syndrome may have hEDS. I have hEDS and I think my mother did.
I enrolled in the HEDGE study and signed my consent form today. Have you considered participating or already signed up? Also Alaska has one and only one EDS specialist.
Do you have any videos about the “precautionary measures” you mentioned possibly to try and prevent symptoms? I feel like I’m having one flare after the other right now. A rheumatologist finally listened and diagnosed me but ended the appointment with “I don’t treat this though so you’ll have to find another doctor.”
It generally takes a team of doctors, based on your symptoms. My primary care doctor was open to me bringing him research, and we would try medications until we found the best ones. Perhaps your primary could do that, or perhaps they'd put in the referrals to specialists to treat the various issues that your EDS causes you. Management of EDS is based on symptom management. Physical therapy is a big preventative measure in EDS.
Hi Izzy! Your videos have been really helpful over the last year, so thanks for making them!! I was recently diagnosed with hEDS (you are so right about the long wait for genetic appointments!), but I was wondering what your take on "easy bruising" is. For some reason a lot of my doctors got stuck on the bruising aspect of EDS and almost didn't refer me to a geneticist because I don't "bruise enough" in their opinion. Do think bruising with EDS is on a spectrum like skin elasticity? Or is a lack of "easy" and excessive bruising mandatory? You seem to have had some really great doctors when it comes to EDS, or at least better than most, so I was just wondering if they ever explained it. Thanks again! 💜
Easy bruising is not mandatory. You'll see very easy bruising in vascular type EDS, due to blood vessels being especially fragile in vEDS. In hypermobile type EDS, easy bruising can help to point to it, but there are many hEDS people who do not bruise easily. It's not a qualifier, nor a disqualifier. It's not even in the diagnostic criteria for hEDS: www.ehlers-danlos.com/heds-diagnostic-checklist/ There are the official diagnostic criteria for hEDS.
I have pots as well with something else & im going through pure hell to the point I’m saying my last prayer on a daily basis. I notice you talk a lot with your hand as I do. My hands throb. I’m always told it’s CT & I know it’s not when I wake up with such pain in my hands it wakes me,they swell, have woke up twice with blue hands.
Have you been diagnosed with Raynaud's? Have you been screened for hEDS and other issues? Which medications are they using to manage your POTS? The swollen hands generally isn't an EDS thing, but might point to some odd rheumatology or cardiology issue. Have you been referred to a rheumatologist?
@@Dulcimerist I have not been diagnosed with that. I just now got insurance back this year. I went a year with very poor health care. I pray that my new dr does know what he’s talking about.
I am 40. Still fighting for diagnosis, still have the "it's in my head" and officially fibromyalgia(basically they don't know wth is wrong with me). Since i was a kid i had horrible bone pain back then i did have hypermobility. I have the large eyes, thin nose, thin jaw, look younger than my age. But "oh no you don't have eds much less vascular. I also have digestive issues and redundant colon.Then at 21 i had my 1st TIA... went to doctor they said oh it's just chronic migraine but ever since then my white blood cells and platelets have been high. At 30 i had a stroke. At 38 had a vertebral artery dissection. At 39 another TIA. No time has my platelets gone to notmal range nor has my wbc even on aspirin and plavix. Soooo why is everyone ignoring me??.... at this point im not fighting for me, i don't care anymore, im exhausted tired of being tired. Im fighting for my little girl. So she doesn't have to go thru the same shit as me.
I am 37 years old and I was just diagnosed at the end of last month by a geneticist at a pediatric clinic within a large university hospital. I really struggled to find out what was wrong with me for YEARS because I have been dealing with chronic joint pain for a few years now. It got really bad when I was working in a high-stress job in 2017 and dealt with some trauma that year, so I honestly thought it might be autoimmune since that runs in my family. I saw a rheumatologist right before I was laid off the job in Jan 2018 and she diagnosed fibromyalgia and Undifferentiated Connective Tissue Disease based on the fact that I had a positive ANA but no specific antibodies. Neither of the DMARDs I tried worked (I tried Plaquenil and MTX) and I never developed specific antibodies for almost 3 years. Late last year, I saw a new rheumatologist who looked over my history and said it likely was not autoimmune if the DMARDs didn't help me and I didn't develop new antibodies. He checked me over with a physical exam and remarked how hypermobile I was. I've also been told this by a physical therapist and other doctors. I have horrible tendons and really soft, doughy skin (the words of the geneticist, LOL!). The new rheumy diagnosed Hypermobility Syndrome (an outdated disorder, but it led me to seek treatment outside of rheumatology). I saw the geneticist and she matched me to the 2017 hEDS criteria and I meet the criteria so I was given the diagnosis. I was surprised to learn that I actually have the heel papules because I thought I didn't! LOL! I'm now in physical therapy to strengthen my weak muscles and develop a home therapy plan. The geneticist was incredibly knowledgeable about EDS and even gave me a folder of information to read about EDS in depth.
What medicine do Dr.s prescribe for eds? My all over body pain, nerves anxiety, nausea is so difficult to handle. Hoping to find a Dr thank you for the help! I called genetics but they dont test for eds and that's in the bigger city so I'm on the hunt to find a Dr that can help me.
I had two Drs right before a foot surgery and threw it at them that I think I have HEDS and they were curious and surprised that I knew about it at all. I score a 7 on the beighton score. I showed them other issues where it appears that I have very stretchy ligaments. I have bad back with multiple issues. My spine slips out of alignment on me kinda easy. I have scoliosis, a minor hernia at the opening of my stomach and minor mitro valve back wash that only shows itself when I have an upper respiratory infection. I have dislocations in my hands/ legs/ hips and knees. I have a prehensile tail that’s longer than normal and it’s broken off and just hanging there on the backside. Yes I can walk. Yes I have pain everyday. I have bad teeth and suffered teeth crowding all my life. I’m a classic case and waiting on my first Drs appointment with a rumatologist in a few days. I appreciated the Drs interests in my show of flexibility and joint looseness and their kindness instead of treating me like I spend to much time on the internet. Lol
My understanding there is a type that won’t come up by genetics. My specialist highly suspects I have hypomobility n so much pain, chronic n intractable neuropathic pain. I only say this as I watched this really good video by 3 doctors.
I struggle the most with dysautonomia from my hEDS/HSD, specifically symptoms of awful anxiety and terrible sleep. Anyone have any tips and tricks for this?
Pernicious anemia is also comorbid with EDS, so ask your doctor to keep an eye on your vitamin B12 level. If it gets low, ask to be tested for the similar-to-lupus autoimmune disease.
I heard you say on one of your older videos that you got infusions. If it's not too intrusive, could you say what the med is and what it treats. I'm working to revise my diagnosis from RA to EDS. But I've been receiving Rituxan for both the joint pain I have and fibro pain for several years as all the other RA types meds have failed. So just wondering.
I wish I was able to get the help I need. Yes I’m hyper mobile - but I have all of the other symptoms but I can’t get to see a rheumatologist or get referred to anyone. The way the GPs work in the UK mean I’m stuck at waiting for a referral and asking one as I have been for years 😢
I think I hear EDS. I'm hypermobile, have been told i am, however I'm not flexible. My joints just easily sublux or dislocate daily pretty much. But I can't touch my toes with my knees straight. Alot of what made me come to the conclusion to pursue looking into this is just that I've been looking for ten years and every test for everything else has come back negetive.
I'm 46 and have been in pain since 15,but now at age 46 and all my recent illness's I have pinpointed it to this, I will say I am in the stiffness stage now but I used to be very hypermobile i did pass the test but barley because I am over weight and I have Hashimoto's witch excludes some of my past stuff like stretch marks and prolapse, In October I had what I now know was a blockage in my small bowels
I’m trying to get diagnosed but I’m also scared they’re going to say it’s not EDS and then I have no idea what’s wrong with me. My closest dr appointment availability isn’t until December and we’ll see if she can even know where to send me
Hay lzzy can a person have all the symptoms for EDS but not have the stretchy skin? if you can give me a reply back that would be amazing I love your videos and I love you don't forget to smile girl just keep swimming I'm a fibro Warrior I deal with pain on a daily basis I was just diagnosed in December of 2020 with a rare severe form of fibromyalgia
The most recent statistic I’ve seen on having stretchy skin is that 40% of people with EDS do NOT HAVE STRETCHY SKIN. My rheumatologist immediately dismissed my other symptoms because my skin didn’t stretch a lot. Neither does my daughter’s skin and she was diagnosed at Mayo Clinic Rochester after many tests. So if you do not have stretchy skin, you may actually have EDS.
You don't have to have stretchy skin. I've had doctors comment that my skin doesn't seem to be stretchy enough, and I have to remind them that I have hypermobile type EDS, not classical type EDS. www.ehlers-danlos.com/heds-diagnostic-checklist/
@@Batdax - EDS is often a unifying diagnosis and underlying cause for a wide array of other medical disorders. EDS is also linked to increased incidence of other medical disorders. These articles will answer your question, and illustrate what medical conditions can come with EDS: www.ehlers-danlos.com/2017-eds-classification-non-experts/
Hi Izzy, thanks for sharing! Could make a video abut the updates of hEDS? I saw the norris lab saying is 1:500, and some other researchers said is 1:300, are there any other changes?
My daughter figured out i have EDS. I was sent to.a geneticist and dx EDS. Question does anyone else deal with severe hand pain? After 8 years of pain and accused of being an addict. Finally my current doc is researching EDS. She wants me to get braces. Do others have those?
I wish docs would figure me out. Extreme flat foot since birth, unstable foot ligaments now that Im 58, osteo in knees, foot & back. Shoulder pain. Lifting groceries hurts like hell. Rheumy doc wasn't much help. I feel my days of walking are numbered which is scary cuz if I cant work I'm going homeless n hungry. All they do is push NSAIDS which mess up my stomach.
My brother "Epilepsy" occurred 1990 & doctor was late Anupam Dasgupta (Nuro) asia famous triangular park Kolkata, long term treatment 10 years, his (brother 25-12-1987, approx 1988) disease had genetic , but mine had injury when I come from nursing home by someone elbow attack on head of mine 1982. My mom had "CYST" & brother's wife had "CYST". All Types of "Brain Disease" comes from "CYST" and also "Genetics".
i suspected i had eds... went to a reumatologyst (not sure if thats the way its written) and he said i was in fact whole hypermobile... but didnt listened me telling the other problems of stomach dizziness hernias etc... so... i dont know if i sould seek a second opinion or let it sit and try to see specialist to treat the symptoms until i feel encouraged again in to seeking answers...
also i dont know if its hypermobility spectrum disorder or just hypermobile... cose he just said i was hypermobile.... i really feel i wasted my time with him... luckly not my money i would be fuming....
There's a worldwide directory of EDS friendly doctors on the Ehlers Danlos Society website. Definitely find a doctor who is familiar with EDS. The rheumatologist who diagnosed my hEDS insisted that it doesn't cause other issues, but he was flat out wrong. I ended up learning all I could about EDS, and my primary care doctor was open to learning with me on how to treat me.
From what you're describing, it sounds like you're questioning the experience and this rheumatologist didn't really give you any good answers...neither a yes or a no. It sounds like a second opinion could be a good idea
It surprised me that you say that if sb has MCAS or POTS it would mean someone does not have EDS but these conditions, whereas they often go together, I would think having mcas POINTS to eds rather than not, and many people find out about their EDS only after developing chronic illnesses. What's your stance on this? It what sense having sudden onset of EDS symptoms after developing MCAS or CFS would exclude EDS itself? I thought EDS is one of the reasons why you develop some illnesses in unfavourable conditions, while other people don't.
Hello, how much water do you drink in a day? I have slowly motility of stomach by nerv spasm for 7 months and have pain after eating and I drink 3 clear glass of water. And when you drink do you also have pain
Clinic near me has a 2 year wait list and my doctor told me "it takes too long " . It's so frustrating when your doctor thinks you are over exaggerating everything I say or making it up
![Noob To Max With DRAGON REWORK In Blox Fruits [FULL MOVIE]](http://i.ytimg.com/vi/LnBMOinoOvA/mqdefault.jpg)
The best thing about getting properly diagnosed with EDS is knowing what you have. It deflects the "all in your head" gas lighting from doctors, and opens the door to better treatment of the various symptoms that EDS can cause. EDS researchers are constantly thinking outside the box and coming up with good treatment options. Medications such as beta blockers, Clonidine, Guanfacine, Mestinon, and Ivabradine have had a lot of success in managing EDS dysautonomia, for example. Additionally, knowing you have EDS is important to other doctors - surgeons need to know that your skin can tear more easily, and dentists need to know that you're likely resistant to local anesthetic due to your EDS. Being properly diagnosed with EDS is empowering for a patient, and leads to better overall medical care.
Oh God I hate the dentist... he does not believe the anastethic didn't work. I slapped him one time because it hurt so bad. I also had an ingrown toenail once that would not sedate. They tried with 13 needles giving me more anesthetic but it just didn't do anything. I had to go for complete anesthetic... at first they didn't want to do it because they only did that with scared children and people with a mental disability like down syndrome.
@@mandy1667 Find a different dentist. You've been officially diagnosed as having Ehlers Danlos syndrome? If so, prior to dental visits, inform the dentist that for medical liability reasons, you need to disclose that you have a medical condition that affects dental and oral health, called Ehlers Danlos syndrome. There are additional issues beyond local anesthetic that dentists need to be mindful of, such as increased risk of TMJ dislocation. Have these resources available to give the dentist:
- ehlers-danlos.com/wp-content/uploads/MRGDentistryS.pdf
- www.hypermobility.org/dental-health
Extra resources on EDS and JHS patients being resistant to local anesthetic can be found here:
www.ncbi.nlm.nih.gov/pmc/articles/PMC6834718/
www.nature.com/articles/s41415-020-2019-3
(The whopping 88% number of EDS patients who report resistance to local anesthetic was large enough to surprise me!)
@Izzy - An EDS video about dental and oral health would be awesome! :)
I have not been properly diagnosed with anything but pots & mvp. They have me on anxiety medicine as well as a Midodrine just started these & my bp keeps going to low
I am in a bad place today mentally I want to be able to get up & go. I just sit here & watch the day go by. I know get a hobby to do while you have to sit I have some. I got a veiled chameleon ( actually kindly crazy seems they are exactly like pots patients.) made his enclosure. Now I’m back to nothing. It takes me every bit of 6 hours just to get ready , like shower & dry my hair if I can get that done. I’m 46 in August & I was told by a cardiologist the 1 st time when I was 44. So does this mean, from what I’ve looked up pots patients have the life expectancy of 50. Do you know if this is true?
@@emilyloveday2407 The life expectancy of 50 refers to vascular type EDS. A related disorder called Loeys-Dietz might also have lowered life expectancy. Pretty much all of the other EDS types don't tend to have reduced life expectancy. POTS itself doesn't reduce life expectancy, so don't worry about that. The underlying cause of the POTS could reduce life expectancy, but you'd need a doctor to get to the bottom of what causes your POTS. In your other posts you had mention swollen hands, which doesn't quite fit. Hopefully you can see a rheumatologist and a cardiologist.
I'm a 47 year old woman, and about 4 months ago I finally figured I have EDS, and while the symptoms were relatively mild before (no prolapses or dislocations), they were definitely there since I was literally a baby: my mother always bitterly complained that she couldn't breast feed me because I would inevitably start vomiting, and until I was 2 years old, it was practically impossible to feed me while I was awake.
About seven years ago, around the time I turned 40, all those symptoms started getting worse and worse, to the point where last summer I could barely get out of bed. And like I said, it was shortly after that that I realized I have EDS.
Now, here comes the important part: after I figured what was the problem, I started wondering why suddenly I started getting worse, after an entire life with relatively mild symptoms. And suddenly it occurred to me that it could have something to do with hormones. After all, as I get closer and closer to menopause, my hormones are progressively dwindling.
Well, long story short: I started early Hormone Replacement Therapy (HRT), basically just started taking the contraceptive pill to supplement my hormones and stabilize them. And lo and behind, I am doing much better. Not perfect yet, but improving little by little.
So for any women out there getting worse symptoms around their 40s, you might want to look into that.
wow what does the vomiting as an infant have to do with EDS? My mother couldnt even breastfeed me. and i couldnt keep down any formula. the only thing i could keep down was boiled condensed milk with the skin skimmed off the top. i was born doing a split and my legs were stuck up for a while. and i just never slept as an infant. i never thought about these being a sign of EDS. I still don't have an official diagnosis yet. its been almost a year of doctors and tests. but my symptoms are worsening and lately ive been getting capillary bursts in my hands that are so incredibly painful! i am 38. definitely feeling the "getting worse as i approach 40"
You may have Mast cell activation syndrome (MCAS) which is also linked to hEDS. Hormones can be triggers for mast cell activation and vomiting as an infant is common.
Look for.
Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant
Anne Maitland - "Understanding Mast Cell Activation in EDS & HDS"
I got my official HEDS diagnosis!!!! If it wasn’t for your RUclips channel and your incredibly helpful videos I probably would have waited many more years before seeing a specialist rheumatologist. Thank you Izzy ❤️
Hypermobility on it's own is definitely not enough for a diagnosis, but make sure to look into all the comorbidities and side effects, and be honest with yourself. I am diagnosed with HEDS and my brother is more hypermobile than me, but that's it, he's perfectly healthy. It took me a long time to get diagnosed because I didn't understand that my constellation of symptoms weren't just "complaints," but valid pieces of information that doctors need to make an informed diagnosis.
For me, the diagnosis helped because I had a therapist misdiagnose me with hypochondria.. and not for general anxiety about my symptoms, for the literal symptoms of EDS.
Same here too😢
What are the symptoms you felt? Can you please tell
@@Dr.WinAye chronic pain in joints, ligaments and muscles…. Frequent subluxations, hyper mobility, pots, digestive issues, teeth issues and mobile teeth, elastic skin that feels very soft, breathing difficulty and sleep apnea.
@@Zamstein how old are u now? At what age u started developing these symptoms?
@@Dr.WinAye I’m 39, and I started having joint pain at age 5. The hyper-mobility I’ve had since birth.
5:35 - It would be good to elaborate that the 14 different types of EDS can have varying degrees of hypermobility. For example, the hypermobility of vascular type EDS tends to be confined to just the fingers and toes. Someone with vEDS might not be hypermobile in their larger joints (hips, shoulders, knees, elbows) at all.
LOL I LOVE that you're saying this because I had a section literally talking about this and I either deleted it all together or put it in my file for part 2
this is really good to know I am hypermobile everywhere and I suspect I have vEDS as well as my sister because we both had congenital club foot and she has scoliosis but I was worried about my sister getting a diagnosis because she is not hyper mobile anywhere but her toes and fingers
@@malanamarie5206 Hopefully you can both get in to see a knowledgeable geneticist who can screen you for that and any differential diagnoses, as there are some funky non-EDS collagen disorders out there like Marfan, Loeys-Dietz, Stickler, Marshall, and others to sort through, which may or may not fit your family history. The most helpful would be if you and your sister could have a joint appointment so that the geneticist could check you both at the same time. Also bring a full family history to document that issues run in your family. If you do have vEDS, it's best to get diagnosed sooner than later, as delayed diagnosis is dangerous.
rarediseases.info.nih.gov/diseases/2082/vascular-ehlers-danlos-syndrome
@@Dulcimerist my second cousin has eds I am already set to get a genetic test so I assume if anything comes back that I do have a type of Eds it will be easier for my sister to get a diagnosis thanks for the info!!
@@malanamarie5206 Keep in mind that if the genetic test for any type of EDS comes back negative, you could still have hypermobile type EDS (hEDS). hEDS is the most common of the 14 different EDS types, but its gene or genes have not been identified. Therefore, there is no genetic test for hEDS. Diagnosis for that is made by using these criteria:
www.ehlers-danlos.com/heds-diagnostic-checklist/
A professor who has EDS first tipped me off to the fact that I have a ton of symptoms. After a horrible rheumatologist tried to tell me my pain was my own fault, I went to a physical therapy screening. The therapist had seen a bunch of patients with EDS and after testing my joints and asking about my pain, she was immediately sure I have EDS. She was so surprised at how much it affected my gait; all the therapists in the clinic had never seen a gait quite like mine. Apparently I've been hyperextending my knees for YEARS while walking.
You may have Mast Cell Activation Syndrome (MCAS) which is linked to hEDS and can cause a ton of symptoms and triggers often similar to those we see in ME/CFS.
Comorbidities diagnoses linked to mast cell activation is hEDS, Allergy, Asthma, POTS, IBS, Fibromyalgia, Endometriosis, ADHD, Multiple Chemical Sensitivity, Interstitial cystitis (IC), Migraines, Temporomandibular joint disorder (TMJ), Small fiber neuropathy (SFN), Restless legs syndrome (RLS), Autism Spectrum Disorder (ASD), Trigeminal Neuralgia, Neurologic and Psychiatric Symptoms (NPS) to mention a few.
I understand the stigma and hesitance surrounding self-diagnosis, but I will continue to say I have EDS. My doctors are all 99.9% sure that I have it, but can't officially diagnose me because they aren't specialists. The waitlist for the specialist is 2 years, I've been misdiagnosed 4 times and this is the only condition that aligns with every single one of my symptoms.
A diagnosis is absolutely a privilege, my doctors say that I have EDS, but still refuse to give me an official Dx. I think self-diagnosis can be harmful, but we know our bodies better than our doctors do lmao
edit: my replies keep being removed but i ended up getting my diagnosis :]
Did you ever get your “official” diagnosis
@@katrinaleebaldwin4660 I did!
@@katrinaleebaldwin4660 I did :)
My PCM put an EDS dx in my records.
@@katrinaleebaldwin4660 i did :)
Hey girl! I’ve dealt with issues my whole life, and especially the past two years due to IIH. Long story short, I stumbled across EDS as I was researching for an upcoming surgery. You were one of my first sources of information. Fast forward a few months, and I’ve been diagnosed with HEDS. Thanks for making me feel a little less alone, and thanks for helping me get answers about my body so that I can be treated properly ❤️❤️❤️
I'm so happy to hear I could be a source of info and that i've made you feel less alone!!! ❤❤
I thought I'd share this. Three of my best friends throughout my life got diagnosed with EDS or had a family member with EDS, then learned that I have EDS so showed me how stretchy their skin is and how hypermobile their joints are (plus their history of allergies) and then two other people I worked in a lab with have EDS. While I agree that birds of a feather flock together, I think a lot of people just aren't getting diagnosed or misdiagnosed. I think people who are 40+ likely have misdiagnosis because they didn't look for EDS often in the past.
Absolutely. I think awareness is increasing. I was a student case study when first diagnosed over 40 years ago, because they hadn't had many patients with it or been diagnosed with it. Mind you I accidentally handed them the diagnosis by doing a 180 degree leg raise and saying how if it was RA I should be in a wheelchair because of the pain I was in and crippled but I was still very flexible. I had not heard of Ehlers Danlos or Hypermobility syndrome. I worked as a microbiologist. I think we tend towards more sedentary occupations because of pain, though I had finished my BSc before HEDS joint issues arose. But had fatigue, fainting.
This is such a fantastic and comprehensive guide, Izzy! Getting diagnosed with EDS can be a huge challenge. Here in the UK a lot of us end up in a sort of 'grey area' where if hEDS is suspected we aren't offered genetic testing or sometimes even denied rheumatology appointments, instead just given physio. I'm so glad you mentioned how important a diagnosis can be to patients because it really can be life-changing in terms of validation or access to support. But also, super tricky to get there for some of us!
hi, i know you commented this a year ago but i’m also from the UK and wondering where i go from being told: yes i am hyper mobile and that my pain is caused by muscle weakness (doesn’t make sense since i did gymnastics and hockey). that was from the NHS and it just doesn’t feel like a fair answer to my problems!!
@@supergrass_ have you found somewhere
@@supergrass_dr Pauline Ho is the U.K. EDS specialist. She’s based in Manchester. You can see her privately at spire hospital or through the nhs at a considerable lengthy wait.
I wonder if you can please share how to convince the GP to get a diagnosis
Thank you for videos! My 10 year old daughter was diagnosed with hEDS today. I found out about EDS from you on TikTok. It made so much sense. Our family dr said he’s never seen anyone with EDS and it was impossible for her to have it. I went behind his back and took her to a rheumatologist. She was diagnosed right away! I can’t wait to see what the GP has to say about it! 😂
One GP told me flat out I was a drug seeking security fraudster - decades after I had been diagnosed by a Prof Medicine. I almost fainted! Next visit I brought in a copy of a letter from my hospital medical records to my referring GP from decades ago. I'm not anal retentive, but had had so many issues with GP's I got my medical records.
Ive been struggling with my EDS for going on 29 years now though, it was properly diagnosed, the doctor I saw at the time didnt wanna put it in my records for fear of me having trouble finding a job thatll hire me; that decision of his is now really biting my ass trying to get treatment and get onto disability. My new primary is has been trying to find places with geneticists that I can see but none of them will see anyone over 18 so for them Im about a decade to late to treat. Thanks to this video though I learned of other places to try and am now just need to get some new authorizations for two Orthopedic doctors! And I did ask multiple times if theyll see me despite my age and they both see adult patients. So heres to hoping to finally getting some help! Thank you so much for making this video
A mythical Zeba unicorn here- hEDS, MCAS, POTS, hypoglycemia, Castrochondritis, dystonia and Cranialcervical Instability. Didn’t get diagnosed till last year (2021) when I was 37. I was diagnosed clinically by my PCP and confirmed my my Neurologist. In pain 24/7 but being on Low Dose Naltrexone, CBD/THC (3:1) and Penetrex cream; this combo has made a huge difference.
I wear a neck collar, (hard and soft) ankle & wrist stabilizers, leg compressions and arm stalkings/gloves, custom Orthopaedic shoe inserts, posture corrector and sometimes need to use a cane. And I go to intensive PT 2 times per week for over 2 1/2 hours each time. This combo has made life more bare able but I’m still pretty miserable and hurt more often than not. I get terrible flare ups that can last from a day or two to weeks. And sometimes I get them back to back.
But, if I wasn’t doing this things, I can’t even imagine what life would be like! My major symptoms didn’t start making themselves known till Feb 2021 and it was from sudden chest wall pain. Then the Mast Cells started acting up. I’m on a low histamine diet and take a DAO enzyme supplement with each meal and am now able to eat pretty much anything I want. But there are a few things that I just can’t tolerate like avocados, spaghetti/pizza sauces and high amounts of sugar like a slice of cake.
I am also on full disability. Very blessed to have a wonderful support system and my husband fights this battle with me! I hope by sharing all of this, it can help someone else also. You’re not alone!!
Did you have childhood trauma?
seeing your videos is what made me push my doctors to look for a real answer rather than just brushing me off. I'm now in the process of seeing if I have hEDS and am getting more support so thank you :)
I'm so happy to hear that you are on your journey to finding out answers, and I'm so happy my videos could help you along the way!!!
My Neurologist was the one who diagnosed me with my EDS. He knows about the different types of EDS. Mine is the classical type. Type two. I thank you for all your information and help, Izzy! Your an inspiration to me! And I say that because you have helped me learn more about EDS. I am hoping to go see a orthopedic doctor soon.
Do you mind me asking what the neurologist was specifically seeing you for and how they diagnosed you with EDS? I suspect I may have some form of EDS. I have a neurologist appt coming up bc of nerve pain on top of my feet and chronic migraines for at least 2 decades. Medication hasn't been helping either of them. I've also suspected POTS or something similar (tachycardia and fainting or near-fainting being a major issue)... I'm actually exhausted just thinking about the list of issues that affect nearly every part/ system of my body. I need to get in touch with a rheumatologist, geneticist, and pain management doc. My quality of life is in the gutter.
my rheumatologist diagnosed me with hypermobility spectrum disorder and refused to diagnose me with eds as she said i had to see a geneticist to get a diagnosis but she told me it wasn’t necessary bc there is no treatment 😀 gr8
There's no cure, but there's a wide array of treatments available for the various effects of EDS. Some doctors are simply too lazy to learn. Hopefully you can find a good doctor who can diagnose and treat you. You can find a doctor through the Ehlers Danlos Society website.
Are you from Ireland?they don't diagnose or seem to know anything ..it's heartbreaking at this stage
My rheumatologist as well but he just said I was hypermobile and didn't try anything apart from pt (which made me worse) and then told me that I just had to learn to deal with it (im 16)
This makes me feel not so alone. I was so excited when I got in to see a rheumatologist after an 8-month wait, thinking THIS would be the specialist to finally give me a diagnosis where everyone else had failed, only be to be told that yes, I did indeed have hypermobility, but she couldn't give me an EDS diagnosis--I would have to see a geneticist for that. There's no genetic test for hEDS!
I was told the exact same thing. “Only thing we can do is protect the joints.” With no advice on how to do that…
I really appreciate your channel! I was diagnosed in 2015 with EDS Hypermobility and POTS after a seizure and 7 years of different doctors, specialists, and tests. Every doctor new something was wrong they just couldn't figure out what is was. I'm usually the first EDS patient any of my doctors and dentists have ever had outside of my doctors at Stanford where I was diagnosed. I've only met 1 person face-to-face with EDS which has been a little challenging because for people without EDS you really can't understand what an EDS patient goes through day to day with just the simplest of tasks like standing up or taking a step and passing out or dislocating something. I'm soon to be 50 and I've been told that I'm doing well being diagnosed later in life so to speak which makes me laugh because I've literally had a headache since 10/2007, which I was hospitalized for, that no one can get to break or get go away so with all the headache treatment I undergo on a regular basis, braces on both legs, and wrists when needed, my neck, fingers etc., falling, and dropping stuff on the regular I'm thankful because it could be worse and it's not...even on my worst day it could always be worse! Your channel is refreshing and informitive and I thank you for that!!!
I was diagnosed later in life as well. Sorry you have bad headaches. Migraines often plague those of us who have EDS. Have they tried you on a beta blocker, Clonidine, or Guanfacine to prevent migraines? Those medications can treat the migraines, dysautonomia/POTS, and anxiety which often plague people with EDS. Additionally Clonidine and Guanfacine can treat sleep issues, and Clonidine has analgesic properties which can help to offset EDS pain. One medication to treat multiple issues means fewer medications overall.
Check out Dr schubiner I've had that years ago sycosomatic.but now it's constant muscle pain
Wow, someone else who understands daily headaches! I haven't gone a day without 1 for well over a decade, and they often turn into migraines. Propanolol helped for a bit (It was amazing bc I had forgotten what it felt like to NOT have a headache every day). Butalbitol works sometimes. Nothing else even comes close to helping, and most opiate pain meds (other than IV Morphine at the ER) actually make it worse. The Ibuprofen/Tylenol cocktail doesn't do anything. Torodal is useless. Immitrex, Treximet, Maxalt, Qulipta and others haven't helped.
I'm so sorry. It's a miserable way to live- if you can even call it "living".
@@JustJ-Mein 1998 I had a migraine for 10 months since then I e had so many constant things b3 years constant in my shoulders armpits neurologist says it's migraine without headache?
My rheumatologist was awesome and listened to everything I said and believed me. He told me he believes HSD is the same thing as hEDS
ahhh I'm SO happy to hear that he listened and believed you! Yes, so many other docs think it's probably the exact same thing too but they are separating it for the meantime to try to find a gene mutation
@@IzzyKDNA it be interesting in next 10 years to find out if they will be relumped together, separate branches of eds or remain same for investigating..unfortunately 10yrs is not much time in medicine it seams for reaserch by 1 or more companies then has to be excepted by the intl standards for use in that countries reaserch
@@ServiceDogRosie The HEDGE project is in the process of gathering DNA samples from 1000+ people who have hEDS, in order to do a complete gene sequencing. Within the next two years, they hope to identify specific genes which might be responsible for hEDS. Within that large group of hEDS people, perhaps they'll be able to split hEDS into several subgroups, according to the specific gene that's affected. Even better, they hope to develop specific genetic tests to screen for hEDS, which is the only type of EDS that doesn't currently have a genetic test.
My primary care doctor doesn't seem to realize that my hypermobility is probably linked to my ongoing stomach problems. I showed her how I can turn my elbow 180 degrees and I'm hypermobile in all my joints but she didn't think anything of it at all. Acted like that was normal. I also bruise so easily, get dizzy on occasion, have those papules on my heels, my hair is falling out like crazy, symptoms of MCAS, react to too much stuff. Ten pounds underweight at the moment. I also have Asperger's..was diagnosed with that in June.
There's a higher incidence of Asperger's amongst people who have EDS. You have a compelling case for EDS. Check out all of these articles, and at least print out the EDS Gastrointestinal article for your doctor:
www.ehlers-danlos.com/2017-eds-classification-non-experts/
@@Dulcimerist My weird medical issues have been driving my PCP nuts so she finally gave me a referral to 2 different doctors. One was an "integrative" doctor that my PCP trusts. This doctor said I had EDS & MCAS & POTS. But she could not diagnose me but gave me referrals (but more important is she would explain the issues to my PCP). The second Dr I saw today, a neurologist. And he actually diagnosed me with EDS! And while I don't have diagnosis yet for POTS or MCAS he sneakily asked me questions about them like "do you get dizzy when you stand up". And he understood the sensitivities too! So I finally got my diagnosis and a referral to a geneticist too! 😀
Same as mine sure I have Asperger's to father had CFS mother father both hypomobile CPP 25 years now fybro symptoms OCD from 5 are you in UK trying get tested thought s are with you starting ldn soon
i recently saw a rheumatologist to try to get a diagnosis and he spent 45 minutes focusing on my flat feet and told me if i just fix my feet all my problems will go away 🙃
Did they do their job and run you through the hEDS criteria checklist?
www.ehlers-danlos.com/heds-diagnostic-checklist/
If not, print it out and bring it to your next appointment. Also check out Izzy's video that visually runs through the hEDS criteria. Many doctors are clueless about EDS, so we have to be our own advocates for our healthcare.
@@Dulcimerist nope! im gonna have a lovely chat with my primary who refered me cause this man was off his rocker (walking 15 miles a week will fix my hips coming out of socket, im too young to be in pain but heres heavy muscle relaxers, etc.)
@@jessicabohl933 Muscle relaxers are dangerous for people with EDS! They cause decreased muscle tone, increasing joint instability and increasing the risk of subluxations and dislocations after taking them. Muscle relaxers also aggravate the proprioception issues that EDS people often have, increasing the risks of falls and other accidents which could cause subluxations, dislocations, or other injuries. Walking 15 miles a week won't fix your hips from coming out of socket, and could put you at risk for further injury. You need a referral to physical therapy or some sort of exercise program to safely increase muscle mass to help stabilize your hips. Furthermore, the "you're too young to be in pain" thing is pure bullshit, and is one of the most insulting, insensitive things someone could ever tell someone who has a chronic pain condition such as EDS! If I were in your shoes, I would be tempted to notify my insurance company that this incompetent rheumatologist failed to provide the medical care that you were sent there for, and challenge the bill; but I don't know what your official referral to the rheumatologist said.
@@Dulcimerist i havent talked to my primary yet sadly i have tricare so i have to go where they send me and yes i took one dose and my pain increased ten fold so ive just kinda egnored them thankfully i dont have full dislocations but thats why he blew off the doctors concerns
@@jessicabohl933 Sorry you're stuck with Tricare. That system is a nightmare for anyone who has a rare or uncommon medical condition, since it's likely that whomever you get sent to will be unfamiliar with the condition. EDS is especially tough, due to the confusion of 14 different types of EDS, type classifications and diagnostic criteria being updated in 2017, and so many doctors having outdated or erroneous knowledge of EDS. This increases the risk of misdiagnosis or missed diagnosis, improper treatment, and malpractice. The rheumatologist focused on your flat feet, acknowledged your hip subluxations, and attempted to address your chronic pain - all of which are signs and symptoms of EDS, yet he didn't bother to run you through the Beighton hypermobility assessment and hEDS diagnostic criteria. Your rheumatologist visit would be like if a patient was referred to be evaluated for diabetes, and the doctor didn't run a blood glucose test and then gave the patient a sack full of candy and cupcakes.
I'm really curious if you meet enough of the hEDS criteria for a diagnosis. If you look up above here in Izzy's video description, the first link she lists is an excellent video with detailed visuals of how to run through the hEDS diagnostic criteria. You can follow along with the hEDS checklist from my previous link. If you do meet enough of the criteria to qualify, firmly and insistently advocate for yourself to be diagnosed. The rheumatologist obviously lacked the training and competence to diagnose you, and even gave you advice and medication which could worsen your condition and put your overall health and well-being at risk. Your primary care physician should be able to diagnose you if you have hEDS. The diagnostic criteria are straightforward and easy to understand.
I had a similar experience with a rheumatologist in 1996, which caused my hEDS diagnosis to be delayed until 2013. The result of that delay cost so much time, energy, and money as my other doctors looked elsewhere for answers; while also delaying treatment, allowing my EDS symptoms to worsen, and putting my overall health and well-being at risk. Hopefully your primary care physician can jump in there and get the job done so that you don't have to go through what I did.
Just found your RUclips channel and wow I just wanted to say thank you! My daughter is 2 years old and currently under investigations in Australia for EDS. Getting doctors to believe there was something was going on with her was so difficult. "Babies are flexible" is often what I get told repeatedly, so frustrating. She was born with bilateral hip dysplasia requiring a brace for 8 weeks and she has dysphasia requiring thickened fluids and a soft diet, she has special orthopaedic shoes and has recently been found to have both ankles with fractures in them bearing in mind she is still walking and running round. I just wanted to thank you for your educational videos. We have seen a neurologist, metabolic specialist, physiotherapy, orthopaedic surgeon and have a paediatrician we have her first genetics appointment coming up
Good luck with the geneticist. It could be another hypermobility syndrome like Osteogenesis imperfecta, Marfans, or a mitochondrial myopathy. But a geneticist sounds like the right place to be, as they diagnose all these and various EDS. I saw one decades ago but was completely dismissed. I saw one at Brisbane Womens Hospital Clinical Genetics a few years ago who knew all about it and the various issues like dysautonomia, gynaecology, etc. Things have definitely improved, but you'll still find turkeys with their heads in a certain place.
Yup I def need new doctors
I'm 38 years old, I was diagnosed 10 years ago by Dr. Tinkle, and since then it has progressed. If asked then do I think it's progressive I would have said no, symptoms are pretty steady as far as comorbidities. I have had progression in GI problems, for example. GI started with abdominal pain, spastic vomiting, and gastroparesis from early childhood, developed IBD and ulcerative colitis in 2018 and in 2021(would have been 2020) I was diagnosed with Crohns disease. You may also come to a point where there are no more treatment options. I have had EVERY possible treatment for my headaches over the course of 35 years and there are no more treatments left. My last option is a coordinated effort between my group of physicians to try to manage the pain. I enjoy your videos and feel they are very helpful. I never post on EDS pages. I only do patient to patient interactions through my doctors, but I thought a couple of examples of what EDS may look like 10 years after diagnosis with aggressive treatment might help someone. Keep up the excellent work❤
i love your info, it really helps me study. You are beautiful and smart, keep doing what you’re doing. I don’t have EDS as far as I know, but you really help me think. Love you and keep up the good work❤️❤️
Thank you so much, this is incredibly kind!
I’m lucky to be the first comment on a celebrity’s video🤪😊
LOL definitely not a celebrity hahah
I like how you encourage a full spectrum of managing pain. I'd like to see a video on how chronic pain affects mental health. Seems like a full spectrum approach vs complete pharmacologic reliance is the best method. I have some chronic issues and have learned a lot from your channel.
I just made a geneticist appointment after being on a wait list for almost three years lol! Your channel has been helpful especially while I’ve been waiting
Just starting the process of gettign the diagnosis for HEDS. My dr looked at me show her the beighton score and ordered the paperwork from the clinic to do the preassessement. It's an up to 24mth waitlist and 4.5hr drive to the only clinic in the entire country here in Canada. Hoping this will help with things even if only to know why I'm experiencing these symptoms for pretty much all my life and was gaslight by all previous drs as being nothing. Thankful for your channel and the info that helps me understand better
Thank you so much for this video!! After my second knee surgery (a TTO and MPFL reconstruction), my physical therapist strongly believing I have EDS, being diagnosed with hypermobility and POTS (along with many other issues), and many medical mysteries (that could be due to EDS) I have decided (with the help with my mom, she also shows symptoms) to seek a diagnosis. It’s all very overwhelming but this is very helpful!!
I thought about this legit just yesterday! Then you put one out!! Fantastic!!
You are a lifesaver
It was my GI doctor that said I might have EDS, right now I’m still working with my doctor to see if thats true
Glad that your gastroenterologist knew enough about EDS to be able to keep an eye out for it! Do you have gastroparesis, IBS-C, GERD, or other gut motility issues which can be associated with EDS?
The way my Dr put it was that the EDS itself does not get worse but the symptoms do. The EDS is in your genetics, it does not change. The long term effects that it has on your body can get worse, just like normal stress on a non EDS body.
I’m at a really frustrating point in my diagnosis right now. Have had an orthopedist refer me to genetics for it, only to have genetics refer me to a few other doctors and be super vague about why, which was a problem because I don’t want to hop around to different doctors, because when I’ve done that in the past, they think I’m faking. I just don’t know where to go and it’s been months cause of COVID.
Sounds like they're passing you around like a hot potato. That happened to me as well. What types of specialists have they passed you around to? Do you meet these official hEDS criteria?:
www.ehlers-danlos.com/heds-diagnostic-checklist/
Bring that to pretty much any doctor, and they can diagnose you with these official diagnostic criteria.
It is really frustrating because they don’t know the answer so they assume your faking or make you feel as though you are. I’m right there with you. I was finally diagnosed with POTS at the age of 45. Having many nights in the hospital only to be told nothing is wrong or I have a bug. I have severe pots attacks with severe anxiety now something else is wrong with my joints. I dk if I’m dying soon but I do feel like my heart is slowing down more & more & nobody is listening or nobody cares.
@@emilyloveday2407 Sorry you're experiencing this. Have they tried you on a beta blocker, Clonidine, or Guanfacine to treat your anxiety and POTS? Those medications can be very effective at treating both, especially in hypermobile disorders such as EDS. I highly recommend the webinars "When is Anxiety Not Anxiety: Psychiatric Misdiagnoses in EDS" by Dr. Alan Pocinki and also "All in Your Head: The Problem of Psychogenic Diagnosis for EDS" by Dr. Diane O'Leary, both of which are posted on RUclips.
Annika , do you live in Sweden ? If so ... You have to pull everything by you self , the doctors here don't know anything about eds... I have learned my doctor's about eds more then anybody
I’m lucky to have my Neurologist and his knowledge of EDS, and I didn’t have to be bounced around from places to places. He also takes care of my Epilepsy.
Thank you for these videos, you have helped and my kids and I were diagnosed.
This is perfect timing so I can get a referral at my GP next week!
A local support group or message board might be a good place to locate a doctor knowledgeable in EDS.
totally!!!
The international directory of physicians who are very familiar with EDS on the Ehlers Danlos Society website is another good place to look.
Thank you so much for helping me with these videos, it’s been a blessing trying to understand what’s going on.
I recently went to a geneticist and he thinks I probably have heds but I may have mosaic forms of fragile x and klinefelters syndrome as well that are contributing to my joint laxity.
My sister and I both have hEDS, as well as our dad. He had a stroke July 2020. I reccomend ppl see a geneticist to get bloodwork to confirm.
i'm glad to know i have eds and have an explanation for my symptoms ..it only took 53 yrs .. i was tired of seeing dr.'s that look at you like you're seeing them because you want pain meds .. i don't want pain meds i want help .. i'm not a drug addict .. i don't even take tylenol for a headache
So I have a question for the EDS people. I just got diagnosed with POTS. And looking through the criteria I highly suspect I have EDS as well. Down to hypermobility, shortened palette in my mouth, unexplained stretch marks, stretchy skin, chronic daily pain. Just a lot of stuff. The only thing is, my joints don't fully dislocate. They more just kinda... Stop working, and drop me. Like my hips, knees, ankles. My wrists will do it sometimes. They don't dislocate. They just kinda dont work and I fall. Like ill roll my ankles all the time. They just arn't sturdy. Is the dislocation thing like.... Important? Like is it most likely not EDS if the joints don't fully dislocate? Also I am seeing a Physiologist about it all and have a doctor, so don't worry I'm not trying to self diagnose or anything.
I badly broke my leg and ankle 16months ago. I explained am always falling, straining etc myself. Or just have really bad pain joints. So was sent rheumatologist and straight knew I had Hypermobility EDS, as I have lots of the connected conditions. But my genetics person for neurofibromatosis type 1 doesn't believe in Hypermobility EDS which annoyed me.. Am waiting for my POTS testing, MCAS aswell. Xx
That geneticist is incorrect. Believing that a real medical condition that's recognized by the medical and scientific community doesn't exist could result in malpractice. Perhaps the geneticist is simply behind the times, and still believes that hypermobile type is still classified as "type 3" EDS? The medical and scientific community did away with the numbered type system for EDS, and revised it all in 2017.
Thanks Izzy! Love your vids, as always.
Genetic testing is so hard, if not impossible, to procure in my state, which is nuts. I did pass the main criterion needed to receive my diagnosis, but it’s still difficult when a nurse or doctor looks at your chart and doesn’t even know what EDS is. ☹️
I run into this as well. That's why it's so important for EDS patients to empower themselves with knowledge so that they can advocate for themselves and bring more awareness and education to healthcare workers.
I just got diagnosed yesterday it was a shock as I didn’t know much about hEDS before
I have momentairaly seen 2 rheumatologist and one internist... the internist found nothing and the rheumathologist send me to an hyper mobility clinic..... but I'm still on the waiting list, I've been on the list for 2 months now and hope I will soon be able to see that docter. I had to drop out of medical school because my symptoms just came and worsend last year when I turned 19.
I was first referred to a genetic clinic shortly before the pandemic but since I would have to travel to another state, the pandemic made things difficult :/ I am working on trying again to at least get on a wait list. I have been diagnosed with things like early osteoarthritis which make me more concerned about EDS since my initial referral so I think an evaluation is important. Thanks for this video!
See if your doctor can run you through the hEDS criteria. Although it doesn't rule out other types of EDS or other health conditions, ruling out the most common type of EDS might give you some piece of mind until you can see a geneticist.
www.ehlers-danlos.com/heds-diagnostic-checklist/
My chiropractor diagnosed me with EDS using the Beighton scale. One thing that surprised me is that even though I can't reach my thumbs all the way to my wrist, he counted it because I was close. Was it correct for him to do that? Personally, I think EDS would explain a lot of my health challenges throughout my life, but I also don't want to incorrectly assume that I have it.
How close were you? Perhaps he didn't want you to injure yourself. Do you remember your Beighton score? If you had enough points from the other places and checked enough boxes in the second section of the hEDS hypermobility criteria, those two points weren't necessary.
www.ehlers-danlos.com/heds-diagnostic-checklist/
There are a lot of critics of the Beighton, since it isn't a broad check of hypermobility. For example, the shoulders, ankles, and other key places are completely ignored.
My mom has hEDS, and after watching a bunch of your videos (and other people's) I found out I pass a lot of the criteria. I talked to my doctor about pursuing a diagnosis, and they're gonna do some tests.
I have HEDS. 30 years I suffered until I was diagnosed. No treatment suggested yet.
For me, the progression of symptoms is what lead to my getting diagnosed.
Diagnosed via Rheumy and confirmed via Geneticist at age 44. Diagnosed with Lupus at 20. Reconfirmed Lupus diagnosis again at age 44. Multiple mixed connective tissue issues cEDS, Lupus and MCAS lead to further investigation where they discovered cEDS even though I had PROM with all my pregnancies. (ruptures galore) they didn't put the pieces together. I was able to have 2 children, both born premature due to PROM and both have cEDS. Oldest also has Cerebral Palsy and youngest has Lupus and Gastroparesis. I started losing abilities around age 36.
Today I use an electric powered wheelchair and am in a lupus flare up. I'm 48 and live in Minnesota.
Also they discovered MTHFR gene mutation, double copy.
@@MamaMoonShine seams to be the problem tryed ldn so hard in pain
Hi! I was DX with hEDS with a Beighten Score of 8/9 by a geneticist. However, the geneticist did not run any blood test! I’d be willing to bet my insurance has something to do with it. It’s possible that many of those DX with hEDS actually have a different types but haven’t been tested. If everyone who was DX with hEDS got tested, it may be less common than current statistics suggest.
ive been diagnosed with chronic pain syndrome and my doctor is just passing off my hypermobility and subluxing of joints, i also have gi issues and pots. i havnt specifically mentioned eds but i’ve kinda hinted at my diagnosis not being right, especially as chronic pain syndrome is very frequent idiomatic and it doesn’t really make sense for me.
I’m happy to have a diagnosis but i really dont think it’s the right diagnosis and i almost wish i didn’t have one yet so that i could still be getting tested instead of treated wrong.
At your next appointment, ask the doctor to run through the official hEDS diagnostic criteria with you:
www.ehlers-danlos.com/heds-diagnostic-checklist/
Doctors dismissed my hypermobility for years, and without my proper hEDS diagnosis, it just wasted a lot of time and money looking elsewhere for answers. Being diagnosed with hEDS opens the door to POTS medications which work well for EDS patients; such as beta blockers, Clonidine, Guanfacine, Mestinon, and Ivabradine. Mestinon also treats the gastroparesis or IBS-C that often is caused by EDS.
@@Dulcimerist ah thank you! i have an appt in a week so i’ll try to do it then, i’m not great at mentioning things but i’ll try aha
@@somethingsalazar2613 I used to not be good at mentioning things to doctors, but learned that I needed to do that if I ever wanted to get better and have a better quality of life.
Check out Izzy's video which visually goes though the hEDS diagnostic criteria. Some things in the criteria, such as the little white bumps on the heels, need to be seen in order to understand what to look for.
I think I have gastro paresis and EDS and the only person that is listening is my cardiologist. I was diagnosed with sinus tachycardia but he said it could be POTS. I’m on ivabradine and motilium plus other meds and they are working to an extent
I have a lot of problems with my hyper mobility. So my physical therapist suggested I try to bet tested for eds. I am only 15 so they told me I couldn't get diagnosed till I was 18. Has this happened to anyone else?
I’ve been diagnosed with POTS and Fibromyalgia, recently found out that my echocardiogram showed me developing a “leaky heart” in which my one of my hear valves has stopped closes properly. (Wasn’t there back in 2017 when I had my last echo)
I’ve always have been super flexible, so are a few of the women in my family, we can twist our legs around and bend my legs so my feet face backwards. I could also put my foot flat against my face since elementary.
Walking down the stairs is uncomfortable at best and at worst I’m stuck in bed. About a year ago, I got hurt on the job and the area around my gallbladder messed up and never healed.
They (PC Doc) told me it must’ve been a damaged muscle, but I insisted on getting my gallbladder tested (it runs in the family), HIDA scan came back normal, but they’re wanting me to get an organ removed regardless of this.
Two of my co-workers brought up EDS to me, and I always shrugged it off till I saw it pop up as a possible cause for my new little heart defect.
Then I think about how my knees often pop out of place for a few days at a time, how my ankles often roll, and how I have to fix my jaw back into place after the bones start rubbing together or just don’t feel right.
My PC is so dismissive, and I really don’t want to get a whole organ (a helpful seemly healthy one at that) to be removed when I already have had GI issues practically my whole life.
I just want a name for what’s going on. And frankly my fiancé’s insistence to work out in the gym to have the pain go away is kind of… very annoying.
I can’t even walk down the stairs without feeling like I may fall. Yet I can’t get my landlord to add in a staircase bar to help prevent any falls. It’s ridiculous, and I know having a name to my issues would help press its importance.
I don’t know if I have EDS, but this whole process of clearing the confusion is such an expensive and time consuming thing. All while being pressured to make rent despite no jobs hiring for people who can’t drive, work full time, or be in hot locations without risking a fall.
I’ve passed out multiple times within this year alone, and when I was working my last job (part-time) I was still getting close to passing out almost daily even with additional hydration w/electrolytes.
It’s such a headache. 😓
I was diagnosed with hypermoble EDS yesterday (I thought I had it becouse my mom has it and turns out I was right). And I’m pretty out of my depth right now haha. I already have a lot going on along with the fact that I turn 18 in a few days and everything feels kinda crazy right now. I found your channel and i can’t tell you how greatfull I am to you for making these videos. It’s one thing to watch a boring science video with people who are 3x my age saying all the worst facts about what I have, and it’s another to watch a very engaging video from someone who’s lived with this and someone who is closer to my age. Thank you so much 💛💛
Sorry that you have hEDS, but glad that you got diagnosed so that you have a unifying diagnosis for the various EDS-related health issues that you have. Learning all you can about hEDS is super important, since many doctors are clueless or have erroneous knowledge of hEDS. That's why videos such as Izzy's are very important as a resource to patients and doctors.
After I was diagnosed, these articles were also super helpful for my doctors and myself:
www.ehlers-danlos.com/2017-eds-classification-non-experts/
❤️❤️❤️❤️
I’d love to get your opinion with the idea that adhd could be a comorbidity or have correlation to eds.
Dr. James Kustow is one of many clinician-researchers who study the area; he believes there is a correlation. There’s a lengthy lecture on the subject that has been uploaded by the Ehlers Danlos Society that is pretty informative.
Yes a saw! I’m so interested but of course there’s not too much data on the subject
Yes, it is. Interestingly enough, the ADHD medications Clonidine and Guanfacine can also be effective at treating POTS.
Also, check out the webinar "When is Anxiety Not Anxiety: Psychiatric Misdiagnoses in EDS" by Dr. Alan Pocinki.
@@Dulcimerist ooh thanks! Absolutely will look into it
@@Mojojooojo - Clonidine and Guanfacine are also often prescribed off-label to treat anxiety, sleep disorders, nerve pain, migraines, dysmenorrhea, and additional issues. They work by lowering the amount of norepinephrine in the body, which in turn calms the sympathetic nervous system and "fight or flight" panic response.
I'm not sure if the condition worsens but as you mentioned the symptoms progress.
I could contort, voluntarily dislocate and do parlor tricks when I was young.
Now at 62 I can barely move arthritis everywhere.
I have a rare form of EDS, TNXB with two deaths in immediate family. It’s a very hard condition to pin point and diagnose. I had so many strange symptoms that involved so many different systems in the body. It took well over 20 years to put all the pieces of the puzzle together.
Im 48 and was diagnosed in the last year. My 16 year old daughter was also diagnosed shortly after me. I also suspect my middle son of having it as well but he has less symptoms. Im pretty sure my other 2 sons dont have it. My daughter has some mild circulatory sympyoms but doesnt seem to be a major problem for her. My pots is debilitating and has gradually gotten worse over time. It is so frustrating.
Hoping you can get your POTS under control. The major medications that are often used to treat EDS POTS are beta blockers, Clonidine, Guanfacine, Mestinon, and Ivabradine. Have they tried any of those with you yet? Mestinon also treats gastroparesis and IBS-C, which is a bonus for some EDS patients.
@@Dulcimerist No, the only thing I've been on is gabapentin which helps with the bloodpressure, breathing rate, and heartrate spikes, but im weaning off of it because it was causing dips in those to occur, especially when I sleep. My O2 levels will sometimes drop as low as the low 80s, my heartrate as low as 40, my breathing rate as low as 9, and my bloodpressure drops as well.
@@SandAngels73 Gabapentin tends to cause problems for EDS patients with long term use. The weight gain from it puts more strain on joints and increases pain in the long run. Its effects as a central nervous system depressant could help reduce tachycardia, but it's more of a last resort medications for trying to manage POTS. I'm very surprised that they haven't tried any of the first line and alternate POTS medications that I mentioned. Are you being treated by a neurologist instead of a cardiologist?
@@Dulcimerist
My PCP is trying to treat me but doesnt have alot of experience with EDS. This is a fairly remote area and specialists are a long ways away.
@@SandAngels73 Hoping you can dig up good research articles to help your PCP. Since you get bradycardia, I wouldn't recommend beta blockers or Ivabradine. The other medications I mentioned might be worth asking your doctor about. Do you also get digestive issues, such as gastroparesis?
I've had chronic pain and ankle pain and instability for so many years but it's gotten so much worse. I also have other symptoms of Ehlers Danlos syndrome besides though. Planning to go see my primary care physician
I get 9/9 on the beighton score (22M), and on the second part I could get anywhere between 3 and 6 depending on how generous the diagnostician is. And regarding the last point about chronic pain and instability, I don't know if I've ever dislocated anything, and I don't really know how many subluxations I've had. The only one I know for sure is my jaw. And I don't really know if my joints count as having "frank joint instability or not" despite being freakishly hypermobile in pretty much every joint in my hands especially. And I do have discomfort and mild pain in multiple joints in my body most days, but apart from my back (which doesn't count towards hEDS) I don't really have any specific joint that will hurt every day. Mostly my joints just hurt if I do specific movements, or if I use them more than usual, like my knees and ankles hurting if I go on a long walk.
I'm obviously hypermobile, and it's obviously symptomatic in every body part, as well as some autonomic dysfunction like POTS among others.
I tried to book an appointment for getting an hEDS diagnosis but just got the reply that a hEDS diagnosis is pointless because you can't do anything other than treating symptoms as they come, and that if I wanted I could make an appointment with a physiotherapist if I have painful joints.
And the thing is I do have some pain and discomfort, but it's mostly a minor inconvenience to me, and some things I simply can't do because they lead to pain, like throwing balls, and I had to stop doing MMA due to injuries and joint inflammations, which sucks, but it doesn't really affect my normal day-to-day level of pain, and I never really feel more than inconvened by my hypermobility syndrome. None of my problems are big enough for me to care enough to go to a doctor about them, and none of them can be treated really anyway. Which kinda sucks in a way, because I really would like to have an hEDS diagnosis, as confirmation that I'm not just some hypochondriatic self-diagnostician. I'm worried about potentially having arthritis in multiple joints in just a few years, and I want to know if I have a valid reason for thinking that might happen you know? If I dance at a party until I get so much joint pain that I can barely move, I wanna be able to tell people an explanation. I wanna be able to say "i have a syndrome called hEDS" instead of having to resort to vague explanations like "I don't have an actual diagnosis or anything but I think I might have this rare condition called hEDS, so basically my joints get worn down really prematurely due to hypermobility, so basically I have the joints of a 50 year old".
I feel really insecure about whether I have hEDS or not. I feel like such an impostor. On one hand I do have the full 9p beighton score, as well as a lot of typical non-joint features, I -might- fulfill the official criteria, and I do have joint pain in every part of my body, but it's just not very significant. It's not the chronic suffering I hear every hEDS influencer talking about. Pain and problems are there, so I'm not asymptomatic, but I don't think it's enough for the official criteria. On the other hand it's gotten noticably worse in the last few years, and I expect it will keep getting worse. Idk, I just feel kinda stuck.
5:33 i thought veds had little to no hypermobility symptoms?
I just don't know who to vent this to.
My mother has it. I have it.
She's been a single mom for a long time and I am an adult now.
We both struggle a lot with health and money. It actually makes me think about how others who are healthy get to live more normal lives.
Same boat, no one wants to talk about the people (like me) who are disabled with eds and poor. If I had a family and support system people would flock to me for support, I watch it happen all the time. I have noticed that I am the black sheep of eds/connective tissue disorders because of my financial and family situation and if I speak up about it…I am always met with silence.
@@JR-pn7xf same. Sometimes I need someone to talk to about it :/
I discovered your videos after my pelvic floor PT started asking insightful questions taking my WHOLE medical history into consideration. In a few weeks I'm having surgery to correct one out of my three pelvic prolapses. Doctors keep looking at me strangely when they find out I've never had kids, yet my internal organs are all dislodged, to the point of needing invasive surgery. I've been misdiagnosed and disbelieved so many times, that the idea of a reason brings so much hope, even if it means chronic pain.
However, I'm a little concerned that I won't be able to get a formal diagnosis from anyone. I pass Criterion 2 & 3 for hEDS, with FLYING COLORS, for so many factors that I always thought were normal. But, I don't pass the Beighton, as my hands have never been flexible, and I've stiffened up with age. My elbows regularly dislocated as a kid, and my hips/jaws/knees are frequently popping in/out, but I'm afraid I won't get anywhere because my bad joints aren't the ones considered. :D Honestly, even though I don't usually recommend self-diagnosis, the prompting from my PT and my own research in the last week has me completely convinced that I've been fighting hEDS, whether I get a professional to validate it or not. For my own sanity, Beighton or not, I'm confident. This answers so many questions. My coping line in the last few years has been that it feels like my body is systematically "falling apart," hah, and now it seems like I can identify a source that shows that my poor body really is actually falling apart, haha. I welcome any ideas or advice from anyone who can help out a sister?
At 54 I will say that while eds may not get worse, but the damage from it definitely does. We learned just a few years ago that the type we have is a defect with the cola12a1 gene plus a few other gnarly ones. If you think you have eds, try to get diagnosed.
I recently signed up for the study university of sc is doing. I really hope they find the gene for hEDS in our lifetime. Not for me but for my Children, we think my daughter who has down syndrome may have hEDS. I have hEDS and I think my mother did.
I enrolled in the HEDGE study and signed my consent form today. Have you considered participating or already signed up? Also Alaska has one and only one EDS specialist.
I will be getting my form soon. Guess I should check my email! The nurse at the local EDS specialist has EDS and is also participating! :)
Yes! I'm part of it too :)
That's awesome I hope we can all contribute to groundbreaking science.
Do you have any videos about the “precautionary measures” you mentioned possibly to try and prevent symptoms? I feel like I’m having one flare after the other right now. A rheumatologist finally listened and diagnosed me but ended the appointment with “I don’t treat this though so you’ll have to find another doctor.”
It generally takes a team of doctors, based on your symptoms. My primary care doctor was open to me bringing him research, and we would try medications until we found the best ones. Perhaps your primary could do that, or perhaps they'd put in the referrals to specialists to treat the various issues that your EDS causes you. Management of EDS is based on symptom management.
Physical therapy is a big preventative measure in EDS.
Hi Izzy! Your videos have been really helpful over the last year, so thanks for making them!! I was recently diagnosed with hEDS (you are so right about the long wait for genetic appointments!), but I was wondering what your take on "easy bruising" is. For some reason a lot of my doctors got stuck on the bruising aspect of EDS and almost didn't refer me to a geneticist because I don't "bruise enough" in their opinion. Do think bruising with EDS is on a spectrum like skin elasticity? Or is a lack of "easy" and excessive bruising mandatory? You seem to have had some really great doctors when it comes to EDS, or at least better than most, so I was just wondering if they ever explained it. Thanks again! 💜
Easy bruising is not mandatory. You'll see very easy bruising in vascular type EDS, due to blood vessels being especially fragile in vEDS. In hypermobile type EDS, easy bruising can help to point to it, but there are many hEDS people who do not bruise easily. It's not a qualifier, nor a disqualifier. It's not even in the diagnostic criteria for hEDS:
www.ehlers-danlos.com/heds-diagnostic-checklist/
There are the official diagnostic criteria for hEDS.
I have pots as well with something else & im going through pure hell to the point I’m saying my last prayer on a daily basis. I notice you talk a lot with your hand as I do. My hands throb. I’m always told it’s CT & I know it’s not when I wake up with such pain in my hands it wakes me,they swell, have woke up twice with blue hands.
Have you been diagnosed with Raynaud's? Have you been screened for hEDS and other issues? Which medications are they using to manage your POTS? The swollen hands generally isn't an EDS thing, but might point to some odd rheumatology or cardiology issue. Have you been referred to a rheumatologist?
@@Dulcimerist I have not been diagnosed with that. I just now got insurance back this year. I went a year with very poor health care. I pray that my new dr does know what he’s talking about.
I am 40. Still fighting for diagnosis, still have the "it's in my head" and officially fibromyalgia(basically they don't know wth is wrong with me).
Since i was a kid i had horrible bone pain back then i did have hypermobility. I have the large eyes, thin nose, thin jaw, look younger than my age. But "oh no you don't have eds much less vascular. I also have digestive issues and redundant colon.Then at 21 i had my 1st TIA... went to doctor they said oh it's just chronic migraine but ever since then my white blood cells and platelets have been high. At 30 i had a stroke. At 38 had a vertebral artery dissection. At 39 another TIA. No time has my platelets gone to notmal range nor has my wbc even on aspirin and plavix. Soooo why is everyone ignoring me??.... at this point im not fighting for me, i don't care anymore, im exhausted tired of being tired. Im fighting for my little girl. So she doesn't have to go thru the same shit as me.
I am 37 years old and I was just diagnosed at the end of last month by a geneticist at a pediatric clinic within a large university hospital. I really struggled to find out what was wrong with me for YEARS because I have been dealing with chronic joint pain for a few years now. It got really bad when I was working in a high-stress job in 2017 and dealt with some trauma that year, so I honestly thought it might be autoimmune since that runs in my family. I saw a rheumatologist right before I was laid off the job in Jan 2018 and she diagnosed fibromyalgia and Undifferentiated Connective Tissue Disease based on the fact that I had a positive ANA but no specific antibodies. Neither of the DMARDs I tried worked (I tried Plaquenil and MTX) and I never developed specific antibodies for almost 3 years. Late last year, I saw a new rheumatologist who looked over my history and said it likely was not autoimmune if the DMARDs didn't help me and I didn't develop new antibodies. He checked me over with a physical exam and remarked how hypermobile I was. I've also been told this by a physical therapist and other doctors. I have horrible tendons and really soft, doughy skin (the words of the geneticist, LOL!). The new rheumy diagnosed Hypermobility Syndrome (an outdated disorder, but it led me to seek treatment outside of rheumatology). I saw the geneticist and she matched me to the 2017 hEDS criteria and I meet the criteria so I was given the diagnosis. I was surprised to learn that I actually have the heel papules because I thought I didn't! LOL!
I'm now in physical therapy to strengthen my weak muscles and develop a home therapy plan. The geneticist was incredibly knowledgeable about EDS and even gave me a folder of information to read about EDS in depth.
What's the difference between Ligamentous Laxity and EDS?
My doctor asked me to do the thumb bend, he also checked on my elbow and knee
What medicine do Dr.s prescribe for eds? My all over body pain, nerves anxiety, nausea is so difficult to handle. Hoping to find a Dr thank you for the help! I called genetics but they dont test for eds and that's in the bigger city so I'm on the hunt to find a Dr that can help me.
I had two Drs right before a foot surgery and threw it at them that I think I have HEDS and they were curious and surprised that I knew about it at all. I score a 7 on the beighton score. I showed them other issues where it appears that I have very stretchy ligaments. I have bad back with multiple issues. My spine slips out of alignment on me kinda easy. I have scoliosis, a minor hernia at the opening of my stomach and minor mitro valve back wash that only shows itself when I have an upper respiratory infection. I have dislocations in my hands/ legs/ hips and knees. I have a prehensile tail that’s longer than normal and it’s broken off and just hanging there on the backside. Yes I can walk. Yes I have pain everyday. I have bad teeth and suffered teeth crowding all my life.
I’m a classic case and waiting on my first Drs appointment with a rumatologist in a few days. I appreciated the Drs interests in my show of flexibility and joint looseness and their kindness instead of treating me like I spend to much time on the internet. Lol
My understanding there is a type that won’t come up by genetics. My specialist highly suspects I have hypomobility n so much pain, chronic n intractable neuropathic pain. I only say this as I watched this really good video by 3 doctors.
I struggle the most with dysautonomia from my hEDS/HSD, specifically symptoms of awful anxiety and terrible sleep. Anyone have any tips and tricks for this?
Pernicious anemia is also comorbid with EDS, so ask your doctor to keep an eye on your vitamin B12 level. If it gets low, ask to be tested for the similar-to-lupus autoimmune disease.
I heard you say on one of your older videos that you got infusions. If it's not too intrusive, could you say what the med is and what it treats. I'm working to revise my diagnosis from RA to EDS. But I've been receiving Rituxan for both the joint pain I have and fibro pain for several years as all the other RA types meds have failed. So just wondering.
I wish I was able to get the help I need. Yes I’m hyper mobile - but I have all of the other symptoms but I can’t get to see a rheumatologist or get referred to anyone. The way the GPs work in the UK mean I’m stuck at waiting for a referral and asking one as I have been for years 😢
I think I hear EDS. I'm hypermobile, have been told i am, however I'm not flexible. My joints just easily sublux or dislocate daily pretty much. But I can't touch my toes with my knees straight. Alot of what made me come to the conclusion to pursue looking into this is just that I've been looking for ten years and every test for everything else has come back negetive.
I'm 46 and have been in pain since 15,but now at age 46 and all my recent illness's I have pinpointed it to this, I will say I am in the stiffness stage now but I used to be very hypermobile i did pass the test but barley because I am over weight and I have Hashimoto's witch excludes some of my past stuff like stretch marks and prolapse, In October I had what I now know was a blockage in my small bowels
I’m trying to get diagnosed but I’m also scared they’re going to say it’s not EDS and then I have no idea what’s wrong with me. My closest dr appointment availability isn’t until December and we’ll see if she can even know where to send me
What’s the difference between hEDS and EDS, if hypermobility is a requirement for all types?
Hay lzzy can a person have all the symptoms for EDS but not have the stretchy skin? if you can give me a reply back that would be amazing I love your videos and I love you don't forget to smile girl just keep swimming I'm a fibro Warrior I deal with pain on a daily basis I was just diagnosed in December of 2020 with a rare severe form of fibromyalgia
The most recent statistic I’ve seen on having stretchy skin is that 40% of people with EDS do NOT HAVE STRETCHY SKIN. My rheumatologist immediately dismissed my other symptoms because my skin didn’t stretch a lot. Neither does my daughter’s skin and she was diagnosed at Mayo Clinic Rochester after many tests.
So if you do not have stretchy skin, you may actually have EDS.
You don't have to have stretchy skin. I've had doctors comment that my skin doesn't seem to be stretchy enough, and I have to remind them that I have hypermobile type EDS, not classical type EDS.
www.ehlers-danlos.com/heds-diagnostic-checklist/
Can some disorders link into other disorders like severe rare forms of fibromyalgia and EDS
@@Batdax - EDS is often a unifying diagnosis and underlying cause for a wide array of other medical disorders. EDS is also linked to increased incidence of other medical disorders. These articles will answer your question, and illustrate what medical conditions can come with EDS:
www.ehlers-danlos.com/2017-eds-classification-non-experts/
What is the name of your severe fybromyalgia sounds like mine
Hi Izzy Diagnosis mean case study of disease, "HISTORIA", "EPILEPSY":- are "Brain Disease", my brother has"Epilepsy" :- it also "Genetic".
Hi Izzy, thanks for sharing! Could make a video abut the updates of hEDS? I saw the norris lab saying is 1:500, and some other researchers said is 1:300, are there any other changes?
I’m working on going to find a diagnosis of this.
I am unable to get a dx because I have a hx of RA and do not have a family hx of EDS despite fitting all other criteria.
Have you seen anybody from Postural Restoration Institute? EDS looks like Patho PEC, which they treat a bit.
Hi! How would a geneticist help if they don't have the EDS Hypermobile type gene nailed down yet? Thanks! Trying to figure out who I should go see.
My daughter figured out i have EDS. I was sent to.a geneticist and dx EDS. Question does anyone else deal with severe hand pain? After 8 years of pain and accused of being an addict. Finally my current doc is researching EDS. She wants me to get braces. Do others have those?
I wish docs would figure me out. Extreme flat foot since birth, unstable foot ligaments now that Im 58, osteo in knees, foot & back. Shoulder pain. Lifting groceries hurts like hell. Rheumy doc wasn't much help. I feel my days of walking are numbered which is scary cuz if I cant work I'm going homeless n hungry. All they do is push NSAIDS which mess up my stomach.
Just joined iam struggling with my gastropericis really bad u encourage me
My brother "Epilepsy" occurred 1990 & doctor was late Anupam Dasgupta (Nuro) asia famous triangular park Kolkata, long term treatment 10 years, his (brother 25-12-1987, approx 1988) disease had genetic , but mine had injury when I come from nursing home by someone elbow attack on head of mine 1982. My mom had "CYST" & brother's wife had "CYST". All Types of "Brain Disease" comes from "CYST" and also "Genetics".
i suspected i had eds... went to a reumatologyst (not sure if thats the way its written) and he said i was in fact whole hypermobile... but didnt listened me telling the other problems of stomach dizziness hernias etc... so... i dont know if i sould seek a second opinion or let it sit and try to see specialist to treat the symptoms until i feel encouraged again in to seeking answers...
also i dont know if its hypermobility spectrum disorder or just hypermobile... cose he just said i was hypermobile.... i really feel i wasted my time with him... luckly not my money i would be fuming....
I would definitely look for someone knowledgeable in EDS. So many aren't.
There's a worldwide directory of EDS friendly doctors on the Ehlers Danlos Society website. Definitely find a doctor who is familiar with EDS. The rheumatologist who diagnosed my hEDS insisted that it doesn't cause other issues, but he was flat out wrong. I ended up learning all I could about EDS, and my primary care doctor was open to learning with me on how to treat me.
From what you're describing, it sounds like you're questioning the experience and this rheumatologist didn't really give you any good answers...neither a yes or a no. It sounds like a second opinion could be a good idea
It surprised me that you say that if sb has MCAS or POTS it would mean someone does not have EDS but these conditions, whereas they often go together, I would think having mcas POINTS to eds rather than not, and many people find out about their EDS only after developing chronic illnesses. What's your stance on this? It what sense having sudden onset of EDS symptoms after developing MCAS or CFS would exclude EDS itself? I thought EDS is one of the reasons why you develop some illnesses in unfavourable conditions, while other people don't.
Hello, how much water do you drink in a day? I have slowly motility of stomach by nerv spasm for 7 months and have pain after eating and I drink 3 clear glass of water. And when you drink do you also have pain
Clinic near me has a 2 year wait list and my doctor told me "it takes too long " . It's so frustrating when your doctor thinks you are over exaggerating everything I say or making it up