I woke up during surgery(EDS related!) and laughed at something the doctor said...scared her half to death... hahahaha, good times! Thankfully she had a steady hand. Lol
My joints sublux and click like that all the time... normally just my knees, ankles and elbows but it hurts so badly i know exactly that feeling and then it feels fine.
Personally, I feel like because hEDS is currently (and has been for a few years) an "in" diagnosis, meaning people want this "cool/unique/rare" dx... drs are now more hesitant to dx it. Especially since the new criteria came out. It was being diagnosed left and right, mostly hEDS, and a ton of people either self diangosed, or had a dr willing to just go with whatever... But that's personally why I feel it's harder to get a dx now. Before that, it was rare for a dr to know much about it, and a lot of them knew nothing about it. Hopefully tightening up the criteria is helping and they can figure out the gene(s) causing hEDS. That's why even though I was diagnosed 10+ years ago, I saw genetics once the new criteria came out and got a more "official" dx from a geneticist. Before I did that, a lot of drs I saw considered it a possible dx, not not definitive, due to the overwhelming number of people claiming to have it, but don't. Now, it my diagnosis isn't questioned by any drs I see. Maybe some of these people have HSD, or maybe they don't even have that. But that makes finding the gene(s) responsible for hEDS so much harder, when so many have this dx, but don't actually have it. If you have a prior dx but haven't seen a geneticist, I strongly recommend seeing one. It's made my life, medically speaking, easier. Drs stopped (for the most part) asking to see the "thumb thing" as proof I do have it.
My prayers are with you, Izzy. I almost started sobbing when I was watching the news about Jaquie’s passing. But always remember that she’s not feeling anymore pain, suffering or illness because she’s got a new body and a new life. In heaven you are whole again! She’s resting in the arms of God.
This was my first introduction to Jacquie... I loved this video and felt like I was chatting with you both... I'm gutted to hear she has passed away, I hope you're coping ok Izzy. xxx
My dad friend's wife has EDS and she doesn't have super stretchy skin but she says that she has a lot of pain in her legs specifically. The next time I see her I'll have to ask more questions about it. (Her twin sister has EDS too which I found really interesting)
Hello, I am new to your channel. I have been following "Chronically Jaquie" for quite awhile now. I am so happy to be introduced to you now also. I have POTS (postural orthostatic tachycardia syndrome) and it is so nice to connect with others with similar struggles. SO many people don't understand my issues or don't believe me. SO excited to be following you now too. You take care and have fun :)
I sublux my whole pelvis, which causes my hips, knees, ankles, toes, individual vertebrae, and shoulders to go out. I go to the chiropractor for full body adjustments once a week, but up to 3x a week for my pelvis. I once dislocated my hip walking down a small flight of stairs. I have Dermatomyositis, so it’s hard to tell what is from DM and what’s from EDS. My comorbidities are POTS, Gastroparesis, GERD, IBS, SIBO, pelvic congestion (varicose veins in my pelvic cavity), and Polyarthritis. It’s crazy to see how differently EDS affects everyone! Best wishes for you and your knee surgery!
Hi girls! I have EDS also. I have the hypermobile type and was diagnosed at 20. I started having alot of problems from 14 on but It took alot of time to diagnose. I also have pots and interstitial cystitis (bladder problems) from mine. I have bladder surgery every 5-6 mos and need it for the rest of my life. My pots is alot better controlled now thanks to beta blocker and steroid I take. I have alot of muscle and joint problems too like y'all. It's awful when everything hurts but it's invisible so no one believes you, or when you feel something is wrong but diagnostic tests like xrays and mri are normal. I love learning about others with eds and how we are all so different but yet have so much in common
I'm so glad you two got to make videos and stuff together before she passed 😭 She was so helpful to me and so many others. Glad I was able to find you through her
Hey Izzy!!! You need to make Merch with how you described how you can’t do anything without being in pain !! Lol I would so wear it every time I have to go see a Doctor for my eds pain!!! EDS pain is no joke!!!! I love your vlog!!! Praying for your knee surgery that everything goes good ❤️
Omg THE NECK THING. I hate that so much cause once it starts you know that headache is coming and it’s like watching a train crash only you’re the train.
Thanks for the awesome video showing the variety!! Some day I want to meet you both so much! My big problems are my fingers, SI joint, jaw, right knee and ankle. My joints do the thing with the "is this a subluxation or did my hip just hurt like hell and make a massive pop/crunch for no reason" ALL THE TIME. As in, about 7 times so far today. My skin is like both of yours, I've woken up in anesthesia too and the last surgery I had they had to re-anesthesize me because I came out of anesthesia screaming (they said that wasn't abnormal!? is that a lie?) and pain meds have never worked. Like both of you but especially Jaquie, I too struggle with so much muscle pain and muscle cramping. I am on muscle relaxants which help so much and I do 2x weekly massages very carefully - not too much or I dislocate joints. I have POTS like Izzy, and diagnosed Mast Cell Activation Syndrome that is also very severe like Jacqui, and small intestinal bacterial overgrowth. I have an autoimmune disease often seen with EDS and a few other comorbidities that are EDS common. You guyyys I'm so recently diagnosed (January) it feels like every day I have a revelation that everyone else didn't have this as a kid. Like is it really not normal to have that much trouble numbing at the dentist? Or to have all these stretch marks, stretchy skin, etc? Is writing with a normal pen really not supposed to hurt? Are my joints really not supposed to pop and hurt and move like this constantly - and if so HOW did no one notice this for so long?! The one thing that crazy to me is the timeline - every group I've been in (be it facebook, youtube, reddit, discord, etc) says puberty made things that were "that's weird" to "I am now dying inside please help". I had symptoms my whole life, but I hit puberty at 11 and it got REALLY bad at like 13. I got diagnosed in January at 21 (almost 22 now). And I don't want to admit it but I'm honestly scared because right now every day I wake up and something new happens, something new breaks. Now instead of doctors disregarding it/not believing me, they do test, and I am very glad for that. But it's concerning because all my test results honestly show a lot of concerning things and there are some days where I'd rather just keep pretending I have an attitude problem/fibromyalgia/nothing is wrong with my body. Sorry to vent on you
Claire Jeske - can you please tell me more about this TMJ massage stuff?? I don’t have EDS (at least not to my knowledge!).... but I have such bad TMJ I am being sent to a surgeon.... and I have horrible neck, shoulder pain and kinda constant muscle spasms. I do NOT want surgery on my jaw as I have heard it’s a horrible surgery!! And if this massage thing works- I wanna try it!! Thank you!
I was wondering that too as I also have TMJ which causes migraines sometimes and neck/ back issues. My jaw stopped getting stuck after I got my wisdom teeth out but I still have some other issues with it.
yeah puberty is a bitch for people with EDS!!!!!! I've never tried massage on the craniovertebral joint...i just took a screen shot and ill look into it. Girl, I totally understand you. EDS is scary and honestly sometimes I really do get scared for my future with EDS as well.
I have CONSTANT subluxation and dislocation on every joint in my body, a lot of pain everywhere, though currently my neck and shoulder-blades are my biggest issue My skin is not very stretchy at all though... like at all. It actually hurts to try and stretch it for some reason
I'm only 13, but I have been having eds related symptoms since I was 11. All of my doctors say it's just growing pains, but it is constant and I have do not do alot because of it. I love your channel, and your content has helped me in search of help!
No one would ever believe me and that I was in excruciating pain until I was on the floor unable to move. Just keep trying they will start to listen! P.s. I'm 15😋
I just read an interesting report on EDS. It said that many doctors are confusing “hyper mobility and flexibility “ with each other! They also said that this is another reason why us older folks have s difficult time getting diagnosed. Imagine that. At least there is one explanation as to why some docs are telling people that. They are wrong and need to be enlightened somehow. Thank you Izzy for you and all that your channel is doing for patients out here. God bless you sweety. 💜
Izzy Kornblau I just left my PCP office and she was very frustrated with my specialists after I relayed to her the results. She said that after she saw my list and my obvious symptoms, she couldn’t get how they were so dismissive and didn’t further any testing on me. Oh well I told her that I was about fed up with specialists and my main motivation now is to look out for my girls’ health issues and keep my pain manageable. 🙄
I had a doctor tell me that I was not hyper mobile after my geneticist said that I was most certainly as well I have HEDS as well I have VEDS. I’m stretchy in my skin but not to what she said the GP thought. She is wrong! And fired! Hahaha! Today my right hip just wont work today. I’ve gotta get a cane. 🤔 my son helped me to the car this morning and when I got home I was like. Oh snap. Okay, this will be a journey! I’ve woken up in every surgery I’ve had! Scary!!!! Freaked the doctors out! Oh my muscles in my neck and shoulders!!! Oh my jaw!!!! There are times my neck will freeze up on me. Been in traction 3 times 6-14 weeks at a time. Yay! Not fun! I have gastroparesis as well as well as pots! I so love this talk!!!! Awesome info! Just subscribed so lovely to see another person talk about our issues!!!! Hahahahahaha the protractor!!! Hahahaha
Izzy, I am really enjoying your channel. As I said yesterday, I found you thru Jaquie's channel and have now watched several of your videos. You are such a bright light despite your pain and suffering. I do not have any of the same issues as you or Jaq... I actually found Jaquie's channel because I was looking for info on service dogs. I have a spine/spinal cord injury that I've had 5 failed surgeries on and a failed spinal cord stimulator implant. I am one of these people who grows "gobs" (a highly technical medical term) of scar tissue. Soooo, with all of the damage in my spine and the surgeries I had, I now have scar tissue adhered to the nerve roots and cord in my spine. Of course I also have other issues in my spine, but these are the most explainable. It causes\ mobility issues (I can walk, but my leg could go numb at any time causing falls, etc.), coming and going numbness and constant excruciating nerve pain including severe hypersensitivity (wind hurts) from my hip to my toe in one leg and from hip to knee in the other. I have not worn a shoe for 8 years and living in Canada, lets just say that winters are rough, lol. Anyways, I just wanted to let you know a bit about me, since I feel like I'm getting to know you! I am thrilled that you and Jaq and Judd are having such a great time together. Pls say hi to them for me and give Harlow a belly rub. Take care and thanks for sharing your journey with us. xoxox Heather🇨🇦
Hi Izzy, I was diagnosed with EDS type 3 through process of elimination gene testing at the age of 12. It’s now been over a decade since my diagnosis and my cardiologist, neurologist and PCP all say that with the new guidelines for diagnosis I’m in the hypermobile type. While I had minor pains and issues with the heart and sprains at the time of diagnosis it wasn’t until I was 20 that I found it affecting other body organs and causing other health issues. As of this week I’ve been diagnosed with uncontrollable asthma, IBS-D, PCOS, POTS, have multiple problems with my nerve endings, also have several problems with my heart, and have daily dislocations of body parts (sometimes it’s the same and sometimes they differ). I had surgery last October on my knee after dislocation issues and they replaced my stretched meniscus. I’ll be honest recovery was horrible absolutely the worst thing I’ve ever experienced but if faced with doing it again(which I am-for the other knee and hip) I would 100% do it again. I’m still not as strong as I was before surgery but I’m so happy with my decision to go ahead and do the surgery because I now have a dependable knee and am not constantly worrying over whether it will dislocate. So my post went really long but if you want to contact me to talk more about my experience feel free to do so.
Alex nope. I did end up getting tested for EDS, but I wasn’t diagnosed. At the time I didn’t have enough symptoms, but I probably do now. I was also told I could still have it and not meet the diagnostic criteria, which seems likely. I will be re-evaluated in a year so maybe then.
Stone Johnson Vlogs can I ask is vasculitus part of this? My mother & aunt have it and I am starting to get big veins in my feet that hurt like heck! I have a fibromyalgia diagnosis and my mother lupus but we all wake up during operations and have a lot of joint pain and when younger we were super hypermobile. My thumb popped out yesterday. I am just double checking we don't have this. My neice has a knee condition where she does not have enough cartilage in her knee to run. Myself my mother and daughter also have knee issues. So did my nan. Gone now. Does this sound at all like eds? xx
My hEDS gives me suuuper stretchy skin, chronic shoulder (including shoulder blade) subluxations, moderate hip issues but super chronic muscular issues including cramping, spasms, tearing and pain. First noticeable symptoms was cranial cervical instability. Eventually had my trap muscles surgically “relocated” essentially, and that’s helped a lot. What’s funny is I fit all of the EDS “standard symptoms” they look at except my fingers/hands are not that hypermobile (they’re more hypermobile than a “non-EDSer” just not as flexible as the Brighton score hands show...thumb to forearm etc.). For only that very reason, I had several Drs completely miss the diagnosis. I have since had a ton more issues go wrong, so now we’re very dang sure EDS is the culprit, but that was a lot of years wasted because the idea of what EDS “exactly looks like” in the medical community even is not broad enough. Thanks for bringing awareness to the varying degrees and symptoms of EDS, girls. :) Can’t wait to read how others’ EDS symptoms present themselves. :)
I have that exact same thing where I can sublux and not hurt! I have never full dislocated besides when I was little. It has seemed to get worse with my knees, they are very loose. I just saw a geneticist for the first time in February and he ended up taking my mom’s blood because of direct relatives with previous aneyursms. I really love watching your channel❤️
The worst thing is knowing that general and local doesn’t work well on me and telling medical specialists and being ignored and continuously waking up during procedures or getting an office produce and feeling everything. I got mirena iud and felt everything, I got a lumbar puncture and felt it all, I warn them it doesn’t work and get disregarded and end up with more trauma. I’ve woken up during two thirds of my general anesthetic procedures.
I suspect i have either hEDS or GHSD. I don't fit most of the gastro criteria but all the musculoskeletal issues and pain issues you guys talked about, especially the leg muscle spasms. I love your video's, it's somewhat comforting to know someone understands the pain i'm going through, and it's not just teen laziness, i'm 17 and i feel like my joint pain is constantly getting worse and my parents keep blaming it on how i'm too young for body pain.
I can't believe you get the elbow thing too!!!! I think I may have EDS, but I don't know. Especially since I found out about through the internet, and tried not to diagnose myself, but I kept finding all these symptoms which sound like symptoms and problems I myself have. And when I brought it up to my parents, they too were like, no, you don't have this disease and they started googling to disprove me, and they could not disprove me!! My doctor says it's a rare disease and since I don't have all that stretchy skin or thin skin, I probably don't have it and she's skeptical, but she did send me to genetics, so now we just have to wait til November, I guess.
Hey izzie wanted to share my story with you cause I find it rather common. I have always been hyper mobile in the joint department and been a dancer my whole life right after puberty hit my body went down hill and my joints became painful. After I spent 2 1/2 years researching this condition I went to a doctor and was diagnosed with gHSD at the first appointment. This made me happy cause j knew they were similar. In recent visits the doctor has admitted that I, with 99.9999% certainty, have hEDS though they aren't 100% sure or not and even though I have aced the diagnostic criteria they cant diagnose me with it. Like you say over and over "everyone presents differently". I am stuck in a rock and a hard place with diagnoses
Just wondering why they can't diagnose you with it if you passed the diagnostic criteria? Thanks for your post, I just now realized I probably have gHSD also. I have a positive Beighton score and have issues with TMJ, migraines, shoulders, neck, lower back near tail bone, right lower arm pain, and knee pain. The lower back pain got awful when I was pregnant, things dislocated down there every night, sometimes just moving a tiny bit would make me scream and sometimes it was literally impossible to move. That was 20 years ago and things still pop in and out down there but not as severe or painful. My knees "freeze up" if I stay in one position too long, like sitting for a movie, after 1 1/2 hours, it takes me a few minutes just to stand up and is painful and I can barely bend my knees to get down the stairs. Ballet dancer here too. I don't have flat feet though, I actually have high arches and can bend my toes down and stand and walk on my toe knuckles. I had a lot of growing pains in my legs and knees as a kid too. Every variety of gastro-intestinal issue runs in my family except not gastroparesis. My daughter has autoimmune issues: celiac disease, chronic hives, angioedema, but neither her nor my son have a positive Beighton score like me. I pretty much have everything on that (except I'm 46 and can't quite touch the floor anymore.) Not really sure if all this means anything but it's kind of interesting and could explain some things maybe. Anyway, I hope you can get an EDS diagnosis if you have that and I hope you can get the help you may need.
Forgot to mention that my mom also has a high Beighton and was also born with a hole in her heart. She had open heart surgery at 17 and also aneurisms and another open heart surgery in her 60's. I don't think she has EDS though. My son also has bicuspid aortic valve, among many other things but he doesn't have EDS either, but I just wonder if whatever caused these things was connected to other things, whatever they could be.
I have EDS as well. I’m 13, but I’ve had some problems my entire life but then when I hit puberty at age nine everything became so so bad. I would constantly be in the ER for injuries like sprain, subluxations/dislocations, fractures etc. I’d be there so much that the staff knew me. I don’t know which type I have yet but will be going May 23rd to do testing to find out. My major problem areas are my ribs which are literally never in place, knees,ankles, my wrists which are really bad, my shoulder and recently my hips. My doctors also think I have POTS, Mass cell because I randomly just break out into full body hives or just random patches, and a GI problem as well.
I have hEDS too! My worst dislocation has been my rib dislocations (rib slipping syndrome). I’ve dislocated almost everything except for my ankles, elbows, and hips at this point. It’s such a hassle!!
I don't have super stretchy skin but my most stretchy areas are in the same places as you!! (Arm and neck) i also get the muscle pain and spasms which seem to get worse with my spine problems and autonomic issues. I also related to so many other little things throughout this video! As far as differences, I have Chiari which is anther co-morbidity of EDS and was actually diagnosed with Chiari at 6 and POTS at 8! Yet my gastroparesis only kicked in when I was 15. My worst "joint" is my neck. I've had three neck surgeries to fuse it over 9ish years because it just doesn't like to hold itself together long term lol. My neck and the rest of my spine are evil in general, they hurt like crazy and cause nerve and muscle pain/spasms. My knees hyperextend like no ones business and they hurt a little but not that. My ankles and feet are relatively okay BUT I can never ever wear anything other than very supportive sneaks made specifically for over pronation with out severe pain. My hips randomly sublux along with my SI joints, my shoulders locks up in a Charlie horse like cramp to prevent them from dislocating but do occasionally pop out. My wrists are pretty good however my hands are a mess😂. It's so interesting to see all the differences and similarities from person to person I absolutely love this video❤️.
Have you herd Jac passed away but not from her disease she was passed away because her intestines grew around the feeding tube and it cut off blood is she had just signed on her house that very day
I actually presented with shin splints at 8 years old where the front of my shins just felt like they were shattered all the time and then I was 14 when I had my first this location but I wasn't actually given a diagnosis until I was in my 30s because I kept having to be going to different doctors for each things separately and nobody knew exactly what was going on and I didn't get my diagnosis for any of my GI problems that I have been going through ever since the age of 10 until after I got my EDS diagnosis then people started believing that I actually had digestive problems I have gastroparesis Mast Cell Activation Syndrome as well as having signs of having pots but being re-evaluated and I recently suffered an injury that has made me paralyzed from my L4 and L5 down which actually has cut my pain in half now since I can't feel my legs anymore and they were my biggest source of pain whenever it rained now I only have pain in my back when it snows and then my other joints pop out willy-nilly
When i get my period it makes my hips and lower back seize up and hurt, plus ill have cramps in that area, my period isnt that heavy luckily bit for those few days im in so much pain i dread it
Perhaps ask your doctor about continuous birth control? I know that when I was young and I was going on holidays, etc. I would, with my doctor's permission, go straight into the next package instead of taking a week off. I know it was fine to do it that way for me, but I don't know about long-term if it is ok. Just a thought!
I didn't develop mast cell problems till I was 28. My mum developed her "alergies" when she was the same age. Me, my mum and all 4 of my sisters have hyperflexability. One of my sister has be diagnosed with EDS. I had no idea mast cell was related but makes sense.
You too girls are so funny, your only 21 and of course it your whole lives, which are still very young. Anyway, I'm 57 and just got diagnosed. It took me doing my own research and getting a genetic test done on my own. The Dr. Just couldn't seem to make it happen, he said that there was a two year wait to get into msu university hospital. It has affected me my whole life too, although everyone just thought that I wanted attention. I used to pass out for no reason. Riding my bike, pass out, putting dishes away, pass out, when I went to the hospital, they were checking me for drugs! Okay, we know your not being truthful, just tell us what you took. Are you kidding me? A fourteen year old kid! So now I have heart problems, my heart races for no reason, I used to have severally low blood pressure, but now it runs high, but when I take meds for it, it makes my heart beat too slow and then I'm constantly tired. My hips and pelvis are always out of place, going to a PT helps for a minute, but as soon as I leave and sit in my car, I'm out of place again. And I can actually feel it falling out of place, it is so painful, but I can do nothing to stop it. I feel like I'm going on forever, but I'm so glad I found your u-tube channel because it does help to know that there are other people out there with it. I feel so isolated. 😕😕
I've had sent them since I was 12, but I was diagnosed three days after my 15th birthday. I'm no longer able to play my favorite sport, because I passed out. I have POTS in hEDS. I also have a mild case of gastroparesis and my doctor said I should be careful because it might be likely that I have mast cell.
Knee surgery in EDS is tricky. Hoping yours works out really well! I have hEDS, and had a cancer surgery where they ripped through all of my abdominal muscles, and I have an 18" scar running from my breastbone down to my pelvis. It took me many years to recover from that. They didn't know I had hEDS back then, or they probably would've done chemo instead of that invasive surgery.
Hi girls. So I swear I have EDS but I In south Australia and I got told I have Fibro and hypermobility Syndrome. Fibro is pain perception. My tissues just constantly feel sore, hot and aches and light touch is not an issue but a massage kills. When i had c-section I was told my tummy has lots of bands and adhesions. I have Pots, Me:cfs, my bowel prolapsed In childbirth, I had hernias as a child, i can do all bendy stuff but am now 37 and have a fused spine. Would u push for the diagnosis if u were me? I worry about my kids. My grandma on dad’s side that has passed almost had velvet skin that hung off her. She was skinny as a rake. Had a couple strokes and then died of primary spinal cancer. I wish they had the genetic code. Do u ladies feel like you’re unable to relax as u hold ur body in place, without really noticing? Xx
I also wake up during surgery. once was closer towards the end, when the tube was being pulled out of my throat, I woke up too early and I gagged and I remember feeling really panicked. My throat was pretty screwed up for awhile from gagging against the tube being pulled.
hEDS peeps have gastroparesis more often because collagen helps the stomach make movements to process the food but if it can't make the proper movements to pass through the food it can't digest it and it causes major abdominal problems.
My brother has bad knees…my knees are weirdly one of my best…my hands, shoulders, neck, back, wrists and ankles are the worst. My skin is not stretchy…but extremely soft and velvety…very fragile…so many scars….I rarely spontaneously dislocate…and if I do…I quickly relocate on my own…constantly having subluxation…but mostly unstable joints causing mild spraining and swelling. Seriously bad POTS- (my heart rate goes up to 160s-170s when standing or showering without medication) I have flat feet and hammer toes…I have long lost most of my Hypermobility and it had been replaced with stiffness (scar tissue) I have a plethora of other related health issues. Many are associated with HEDS… I have PIDS, RPC, mild RA, very slow digestive motility and tons of other issues… I wasn’t diagnosed until my 40s…It was the worst-I tried to act normal and damaged my body much more than I would have if I had known…I suffered and cried quietly because if I complained as a young adult about pain or illness…I was labeled as: “attention seeker, lazy, whiner, hypochondriac, drama queen….etc.” I was conditioned to suffer in silence - I had to do the research and tell doctors my diagnosis and finally was able to get properly diagnosed after spending every nickel I made working and thus abusing and destroying my body on doctors treating symptoms or being dismissed…the dentist…my teeth just decayed no matter what and I begged dentists to pull them…but no…fillings and root canals and crowns …. $$$$ and pain and now have no uppers (dentures)
Joanne Duval I’m 53 and my rheumy just now referred me to a Geneticist last week. Get this...he told me I was too OLD to be diagnosed and said that my stiffness now is offsetting my hyper mobility! I have had symptoms since age 12 with growing pains, I’m double jointed, tons of other issues. He also told me there was no genetic testing to diagnosis it. I am lost now except going back to rheumy coz of my trigger thumbs bad along with hands and all of my other joints. He told me I was full of inflammation though. Ugh!
I sort of had the same thing happen to me for Triple X syndrome. I have enough symptoms for the doctor to "unofficially diagnose" me but wouldn't do the genetic test because he didn't think I needed to know unless I was getting pregnant and I wasn't. I just wanted to know because it would give me a reason why I have a bunch of other things. It would have been nice to know, oh well. It feels like having to call the alphabet the abcde...but not "the alphabet." I know it must be much harder to deal with EDS though. I hope you can get what you need to help you anyway.
Kirsten Courtney thank you for your input. I am like you with reasons for wanting to know but it’s like that doesn’t justify enough for them to go to the trouble or put forth any effort to give us OUR answers. I want to know why I have had SO many different unrelated things wrong with me my ENTIRE life, whether there are any treatments for me at this point in my life. Then, if I had to guess, both of my daughters have some form/forms of EDS or other genetic diseases.
Prior to diagnosis I lived a Vascular type EDS life. I had uterine rupture, and artery rupture during surgery. Anaesthesia did not work for the emergency c-section. I wish I knew that the hernia surgeries which followed the previous surgeries would have led to complications because the surgical team found lesions from previous scars which glued to my other organs. Today the meshes feels like they are unstitching. Ultrasound shows a deformity in the mesh. Suffered with vestibular migraines which affects the cerebellum veins daily. It’s been painful and miserable. Thank you for spreading the word. I was diagnosed 2 weeks ago and I will be getting the genetic test because vascular type appears to be common in my family. Thank you for spreading this awareness. Take care of yourself and body because dislocation May cause irreparable nerve damage
Joanne Duval God bless you coz you have been through a lot in your life. I feel like my parents parents may have had Vascular Type due to all of the hemorrhages and aneurysm in their lives. Then my maternal grandmother was always being “cleaned out” due to adhesions.
I always thought it was just joints learned something new. Have either of you used KT tape? I saw Martina (Simon & Martina) used it & wondered if it was something you've tried & how it works.
Hi. Thanks for the video. It's so interesting how EDS can show up so differently in different people. I have a question for you what kind of doctor deals with EDS? I think I might have it and I didn't know what kind of doctor to go to. Thanks a lot. I hope you're having a good day and not in too much pain.
My daughter was diagnosed with hyper mobility syndrome a few years and from watching a couple of ur videos (as they come across) she has EDS but her drs keep telling me she dont.
I've been diagnosed with hypermobility but think I may have heds, do I have to have bendy fingers because mine arnt but they are very stiff but dislocate alot. I have many gastro problems and knee and hip dislocations to point where I cant walk. I'll be going to physio soon so hoping that helps.
This is obviously very late to the party but funnily enough, I have the trifecta but don’t get as effected by eds & have more symptoms of dysautonomia & mcas than anything else
My eds symptoms were mild as a child except for excruciating legs cramps. I was just "very flexible". I made it through puberty ok. But when my hormones shifted again in my late 20s (combined with the use of cipro which had not yet been found to be bad), my symptoms went haywire. By the time I hit 32 I could no longer work. Hormones can be a killer.
shywolf4 my story is very similar apart from the fact that my symptoms did start getting bad until after an emergency appendectomy during my mid 20’s. I had complications from the anesthesia and that’s when my doctor and I realized there was a lot more going on than we realized. I’ve always felt so strange about not being as aware as a kid I just always thought they were “growing pains.” I stopped gymnastics because of the pain. Now I know it was EDS all along.
Strongsand yup. Mine worsened with hormone changes as I aged. But what pushed it over the edge to disabling was a year long chronic ear infection (non eds related) and the subsequent antibiotics and surgery needed. I was diagnosed with fibromyalgia for years. I saw a new doctor because the one I had been seeing had me on so many meds I felt like a zombie. The new doctor kept asking me if I has "this" or "this" or "this" etc. my responses were "doesn't everyone?" Nope. That was how I finally got diagnosed with EDS at almost 40. If you do not know something is a symptom, they why would you mention it to your doctor? Lol.
The anesthetics 🤣 I have that, I think it's caused by the MTHFR gene or something like that. My dentist did not understand when I said the anesthetics wouldn't work, the 16th century tooth extraction was really fun. The hips too, mine dont hurt they just feel off and makes me walk funky, that started in high school when I played football, never knew what was wrong and it didn't hurt so I'd just keep playing... probably not the best idea playing football with a subloxed hip though...
Oh my god I feel things shifting inside of my wrists and things move in and out. Things feel like a dislocation and then I don’t have any signs of dislocations after that. The thing I have issues with is hyperexstention.
Hi ladies I found out that I have hyper mobility when I was 15 years old because I did a cartwheel and it went wrong my right knee came out the hospital said can you band your thumb back and I can So that is how I found out when I was 26 years old I was playing football with my younger brother it happened again but it came back in I still want to hospital with it and 2019 it happened to my left knee but I did not need to go to the hospital this time so now in my life I am going to be more careful with my knees 😀
I'm recently diagnosed with POTS and hEDS (like you Izzy, my doc thinks I have mast cell but I'm not sure). It's such a confusing world to be in! I am 25 and it is CRAZY to think I beat myself up for being unathletic and "lazy" my whole life (I'm 25), wrote off my own pain, and now realizing that I wasn't crazy and that there is something actually wrong. Do you have an email? I would love to talk to you about the EDS stuff I still don't understand!
It’s not inherently “progressive” or “degenerative,” per se. Like, your collagen won’t get worse. Your connective tissue could just have further damage done to it, new manifestations can pop up, etc. OR in some people their health can overall improve w/ proper treatment, and sometimes they do stiffen up a bit with age, though again that doesn’t happen to everyone.
Mike MakesRight l: As a 55 year old female EDSer, most definitely yes. We all break down as we age, but with EDS it’s much more dramatic. Which makes perfect sense. Sorry, but it’s inevitable.
B D - that's what I was afraid of. I follow Hannahr916 on YT and IG and she is going through absolute hell w her digestive system. Such a beautiful person, like Izzy, shouldn't have this.
Tenho todos os sitomas só n tenho a pele elástica e os dedos também n são mais os sitomas de dores é igual 😢 medico diz q n tenho n pq n tenho a pele elástica 😢
EDS (not sure what type) runs in my family and I have been diagnosed with joint hyper mobility my problem areas are my neck and my legs especially my knees which are rotated in different directions. I've been told I may have EDS but I'm not sure how I can go about getting diagnosed. Can anyone help with this?
I was watching someone else the other day who has serious inward and outward signs of EDS so I was sure I didn't have it after watching that but seeing how your cases are presenting now I'm wondering if I should get tested. I'm hypermobile in my joints and my jaw does that thing you were talking about with your wrist. I can't open my mouth real wide because it will get stuck and if I'm biting into a sub it will crack and hurt so bad when I close it. I push rib heads out all the time when doing floating splits by pushing my shoulders together and opening my chest. And since I've been a small kid I can pop my hips in and out. Now they just slid out if I stand with weight on one leg or if I do certain exercise movements they will pop in and out. My daughter can pop her shoulders in and out the same way and one of her thumbs dislocates. I was diagnosed in 2003 (by the old protocol) for gastroparesis and have suffered my entire life with digestive issues. I was at the Dr the other day and didn't mention EDS testing because of that other person's testimony of their journey and now I'm regretting not asking after seeing this. I constantly injure my left leg in splits because my joints are more hypermobile than that leg can support. I am 39 and can go into right splits without warming up. I pass the hypermobility tests and my physical therapist also confirmed I have hypermobile joints. It's the other things you guys mention that make me wonder if it's more than just hypermobility. I'm more concerned with my daughter having it if I do since she has a lot of the same characteristics.
in the past, many doctors had actually noted that I was hypermobile, but when I got bad at 15/16 we actually suspected autoimmune diseases. It wasn't until I got diagnosed with gastroparesis and started having POTS symptoms and have my loose joints cause more problems that my doctors and I started thinking it could be EDS. I did some research and mentioned it to a lot of my docs and all of them were like, hmmmmm, that sounds like a real possibility...let's find a specialist. and i found a specialist and got diagnosed.
i haven’t been diagnosed yet, but i’m sure i have hEDS. i’m 15 and my problems have been getting worse. i sublux my shoulder every day (it’s so annoying), my pinkies sublux constantly, my hip has subluxed a couple of times, i have reaaaally bad knee pain, and i can crack and pop almost all my joints (idk if that has to do with eds, but it’s annoying and distracting and sometimes painful). and i totally get the elbow cracking!! it hurts SO BAD and i have no idea why it happens. i’m going to PT for my shoulder subluxations, so that’s good. but every doctor i go to says “you just have extreme joint laxity” and i’m like,,,, well then how do you explain my POTS symptoms????? and my muscle pain???? and my flat feet??????? i’m fighting to get a diagnosis, wish me luck!!
My elbow does that, it really does hurt. My jaw gives me a lot of problems, my face gets really tense which causes my jaw to hurt like a b. My lowerback, neck, and shoulders and ankles are the worst when sitting or walking. When my feet are flat on the ground my ankles hurt so much.
Adding a comment about how mine affects me! I have a lot of the classic hEDS symptoms, but I have extreme rib/chest wall problems (all of my ribs on the left side sit slightly out of their joint sockets), my balance is very visual-heavy due to such flexibility (aka if I close my eyes I almost fall over). Also circulation! My arms fall asleep all the time because my sub-clavicular artery gets closed off by chest tightness.
The rib-chest thing sucks, but I also get spasms in my lungs and chest wall (like the spasms you were talking about) where it feels like there’s a Charlie-horse when I breathe! That one stumped doctors for a long time lol
I have HEDS but both my mother and father have two diff types. My mum is classical like BUT only I have Dysautonomia POTS, OI, OH [it fluctuates), subluxes and dislocations, I have gastroparesis and MCAS. My sister on my dads side seems to have Dys now too but yeah hello help lmao
i’m late to this video, but i’m currently on a journey to getting my hypermobility diagnosed, and the biggest problem i’ve been running into is my lack of extreme visible hypermobility (my elbows don’t go backwards, my knees only kinda do when standing, my thumbs almost touch my arm but not fully, etc) but i have very frequent subluxations/dislocations. i usually sublux like once a day at least. but because my joints don’t visibly bend backwards, doctors are quick to dismiss any diagnosis outside of fibromyalgia. i was wondering if anyone has experienced this at all, and if so what tips could you give? it’s incredibly frustrating because fibromyalgia doesn’t explain that at all, but because i was already diagnosed with it they just assume it explains everything
Yeah tbh same. I'm very hypermobile, but two of the joints that are my elbows and the backs of my knees, and so I only score a 5 on the beighton score. and sometimes I can't even touch my thumb to my wrist. It changes day to day. But I saw a specialist who assessed my overall hypermobility as well, plus I passed the criteria for hEDS, so that's how I got the diagnosis. You need to find a doc who is very knowledgable about EDS and show them all of your hypermobility throughout your entire body as well
Izzy Kornblau thank you! i’ve definitely been struggling to find someone who knows a lot about EDS and it’s been making me feel like i’m just making this whole thing up. a friend of mine mentioned a geneticist she went to who was really knowledgeable and diagnosed her, so i think we’re going to try to see her as soon as we can
Btw since the first time I watched this I've been dx with heds pending genetic testing. In also going to be tested for pots. I've been sick most of my life and its sooo nice to finally have a reason. But now I struggle with "not being sick enough" to deserve my dx (mostly in my own head) since most of my issues are internal.
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May Jaquie rest in peace. Gone too soon. :-(
I woke up during surgery(EDS related!) and laughed at something the doctor said...scared her half to death... hahahaha, good times! Thankfully she had a steady hand. Lol
Hahah oh dear. This did make me laugh.
This would be my worst nightmare haha, I hope I never wake up during surgery
I haven’t woken up, but it’s been hard to get me under before
I don’t go under easily and screamed through a root canal with cotton in my mouth when the lidocaine and Versed did not work at all
My joints sublux and click like that all the time... normally just my knees, ankles and elbows but it hurts so badly i know exactly that feeling and then it feels fine.
Personally, I feel like because hEDS is currently (and has been for a few years) an "in" diagnosis, meaning people want this "cool/unique/rare" dx... drs are now more hesitant to dx it. Especially since the new criteria came out. It was being diagnosed left and right, mostly hEDS, and a ton of people either self diangosed, or had a dr willing to just go with whatever... But that's personally why I feel it's harder to get a dx now. Before that, it was rare for a dr to know much about it, and a lot of them knew nothing about it. Hopefully tightening up the criteria is helping and they can figure out the gene(s) causing hEDS.
That's why even though I was diagnosed 10+ years ago, I saw genetics once the new criteria came out and got a more "official" dx from a geneticist. Before I did that, a lot of drs I saw considered it a possible dx, not not definitive, due to the overwhelming number of people claiming to have it, but don't. Now, it my diagnosis isn't questioned by any drs I see. Maybe some of these people have HSD, or maybe they don't even have that. But that makes finding the gene(s) responsible for hEDS so much harder, when so many have this dx, but don't actually have it.
If you have a prior dx but haven't seen a geneticist, I strongly recommend seeing one. It's made my life, medically speaking, easier. Drs stopped (for the most part) asking to see the "thumb thing" as proof I do have it.
Carry on for Jaquie. She would want you too.
Wtf she’s dead?????? How?????
Abcdefg yes, she has sadly passed away because of her feeding tube problem... and there was no way she would’ve lived so she passed away in 2019.
She’s still educating. ♥️
My prayers are with you, Izzy. I almost started sobbing when I was watching the news about Jaquie’s passing. But always remember that she’s not feeling anymore pain, suffering or illness because she’s got a new body and a new life. In heaven you are whole again! She’s resting in the arms of God.
This was my first introduction to Jacquie... I loved this video and felt like I was chatting with you both... I'm gutted to hear she has passed away, I hope you're coping ok Izzy. xxx
My dad friend's wife has EDS and she doesn't have super stretchy skin but she says that she has a lot of pain in her legs specifically. The next time I see her I'll have to ask more questions about it. (Her twin sister has EDS too which I found really interesting)
Hello, I am new to your channel. I have been following "Chronically Jaquie" for quite awhile now. I am so happy to be introduced to you now also. I have POTS (postural orthostatic tachycardia syndrome) and it is so nice to connect with others with similar struggles. SO many people don't understand my issues or don't believe me. SO excited to be following you now too. You take care and have fun :)
Go Fish Office I’m a fellow PoTs warrior too nice to meet you!
I sublux my whole pelvis, which causes my hips, knees, ankles, toes, individual vertebrae, and shoulders to go out. I go to the chiropractor for full body adjustments once a week, but up to 3x a week for my pelvis. I once dislocated my hip walking down a small flight of stairs.
I have Dermatomyositis, so it’s hard to tell what is from DM and what’s from EDS. My comorbidities are POTS, Gastroparesis, GERD, IBS, SIBO, pelvic congestion (varicose veins in my pelvic cavity), and Polyarthritis.
It’s crazy to see how differently EDS affects everyone! Best wishes for you and your knee surgery!
Hi girls! I have EDS also. I have the hypermobile type and was diagnosed at 20. I started having alot of problems from 14 on but It took alot of time to diagnose. I also have pots and interstitial cystitis (bladder problems) from mine. I have bladder surgery every 5-6 mos and need it for the rest of my life. My pots is alot better controlled now thanks to beta blocker and steroid I take. I have alot of muscle and joint problems too like y'all. It's awful when everything hurts but it's invisible so no one believes you, or when you feel something is wrong but diagnostic tests like xrays and mri are normal. I love learning about others with eds and how we are all so different but yet have so much in common
I'm so glad you two got to make videos and stuff together before she passed 😭
She was so helpful to me and so many others. Glad I was able to find you through her
Having my 3rd hip surgery soon, totally feel that pain... eds is awesome
Hey Izzy!!! You need to make Merch with how you described how you can’t do anything without being in pain !! Lol I would so wear it every time I have to go see a Doctor for my eds pain!!! EDS pain is no joke!!!! I love your vlog!!! Praying for your knee surgery that everything goes good ❤️
thank you so much, Kelly!!
Omg THE NECK THING. I hate that so much cause once it starts you know that headache is coming and it’s like watching a train crash only you’re the train.
yesssss exactly!!!!!!!!
Thanks for the awesome video showing the variety!! Some day I want to meet you both so much! My big problems are my fingers, SI joint, jaw, right knee and ankle. My joints do the thing with the "is this a subluxation or did my hip just hurt like hell and make a massive pop/crunch for no reason" ALL THE TIME. As in, about 7 times so far today. My skin is like both of yours, I've woken up in anesthesia too and the last surgery I had they had to re-anesthesize me because I came out of anesthesia screaming (they said that wasn't abnormal!? is that a lie?) and pain meds have never worked.
Like both of you but especially Jaquie, I too struggle with so much muscle pain and muscle cramping. I am on muscle relaxants which help so much and I do 2x weekly massages very carefully - not too much or I dislocate joints. I have POTS like Izzy, and diagnosed Mast Cell Activation Syndrome that is also very severe like Jacqui, and small intestinal bacterial overgrowth. I have an autoimmune disease often seen with EDS and a few other comorbidities that are EDS common. You guyyys I'm so recently diagnosed (January) it feels like every day I have a revelation that everyone else didn't have this as a kid. Like is it really not normal to have that much trouble numbing at the dentist? Or to have all these stretch marks, stretchy skin, etc? Is writing with a normal pen really not supposed to hurt? Are my joints really not supposed to pop and hurt and move like this constantly - and if so HOW did no one notice this for so long?!
The one thing that crazy to me is the timeline - every group I've been in (be it facebook, youtube, reddit, discord, etc) says puberty made things that were "that's weird" to "I am now dying inside please help". I had symptoms my whole life, but I hit puberty at 11 and it got REALLY bad at like 13. I got diagnosed in January at 21 (almost 22 now). And I don't want to admit it but I'm honestly scared because right now every day I wake up and something new happens, something new breaks. Now instead of doctors disregarding it/not believing me, they do test, and I am very glad for that. But it's concerning because all my test results honestly show a lot of concerning things and there are some days where I'd rather just keep pretending I have an attitude problem/fibromyalgia/nothing is wrong with my body. Sorry to vent on you
Claire Jeske - can you please tell me more about this TMJ massage stuff?? I don’t have EDS (at least not to my knowledge!).... but I have such bad TMJ I am being sent to a surgeon.... and I have horrible neck, shoulder pain and kinda constant muscle spasms. I do NOT want surgery on my jaw as I have heard it’s a horrible surgery!! And if this massage thing works- I wanna try it!! Thank you!
I was wondering that too as I also have TMJ which causes migraines sometimes and neck/ back issues. My jaw stopped getting stuck after I got my wisdom teeth out but I still have some other issues with it.
yeah puberty is a bitch for people with EDS!!!!!! I've never tried massage on the craniovertebral joint...i just took a screen shot and ill look into it. Girl, I totally understand you. EDS is scary and honestly sometimes I really do get scared for my future with EDS as well.
Izzy Kornblau Try Feldenkrais. It’s been helpful for me anyways. The channel “Feldenkrais with Alfonse” is great. Cheers.
love both of your channels! im so so so so sorry for your loss, i cant even imagine what you, her friends, and family are going through.
I have CONSTANT subluxation and dislocation on every joint in my body, a lot of pain everywhere, though currently my neck and shoulder-blades are my biggest issue
My skin is not very stretchy at all though... like at all. It actually hurts to try and stretch it for some reason
I'm only 13, but I have been having eds related symptoms since I was 11. All of my doctors say it's just growing pains, but it is constant and I have do not do alot because of it. I love your channel, and your content has helped me in search of help!
No one would ever believe me and that I was in excruciating pain until I was on the floor unable to move. Just keep trying they will start to listen! P.s. I'm 15😋
@@_ooops.kidding_7345 thanks!
I just read an interesting report on EDS. It said that many doctors are confusing “hyper mobility and flexibility “ with each other! They also said that this is another reason why us older folks have s difficult time getting diagnosed. Imagine that. At least there is one explanation as to why some docs are telling people that. They are wrong and need to be enlightened somehow. Thank you Izzy for you and all that your channel is doing for patients out here. God bless you sweety. 💜
Yes it's so important to know the difference!! I used to confuse the two, and i was shocked to see that some docs did as well.
Izzy Kornblau I just left my PCP office and she was very frustrated with my specialists after I relayed to her the results. She said that after she saw my list and my obvious symptoms, she couldn’t get how they were so dismissive and didn’t further any testing on me. Oh well I told her that I was about fed up with specialists and my main motivation now is to look out for my girls’ health issues and keep my pain manageable. 🙄
I had a doctor tell me that I was not hyper mobile after my geneticist said that I was most certainly as well I have HEDS as well I have VEDS. I’m stretchy in my skin but not to what she said the GP thought. She is wrong! And fired! Hahaha! Today my right hip just wont work today. I’ve gotta get a cane. 🤔 my son helped me to the car this morning and when I got home I was like. Oh snap. Okay, this will be a journey! I’ve woken up in every surgery I’ve had! Scary!!!! Freaked the doctors out! Oh my muscles in my neck and shoulders!!! Oh my jaw!!!! There are times my neck will freeze up on me. Been in traction 3 times 6-14 weeks at a time. Yay! Not fun! I have gastroparesis as well as well as pots! I so love this talk!!!! Awesome info!
Just subscribed so lovely to see another person talk about our issues!!!! Hahahahahaha the protractor!!! Hahahaha
Izzy, I am really enjoying your channel. As I said yesterday, I found you thru Jaquie's channel and have now watched several of your videos. You are such a bright light despite your pain and suffering. I do not have any of the same issues as you or Jaq... I actually found Jaquie's channel because I was looking for info on service dogs. I have a spine/spinal cord injury that I've had 5 failed surgeries on and a failed spinal cord stimulator implant. I am one of these people who grows "gobs" (a highly technical medical term) of scar tissue. Soooo, with all of the damage in my spine and the surgeries I had, I now have scar tissue adhered to the nerve roots and cord in my spine. Of course I also have other issues in my spine, but these are the most explainable. It causes\ mobility issues (I can walk, but my leg could go numb at any time causing falls, etc.), coming and going numbness and constant excruciating nerve pain including severe hypersensitivity (wind hurts) from my hip to my toe in one leg and from hip to knee in the other. I have not worn a shoe for 8 years and living in Canada, lets just say that winters are rough, lol. Anyways, I just wanted to let you know a bit about me, since I feel like I'm getting to know you! I am thrilled that you and Jaq and Judd are having such a great time together. Pls say hi to them for me and give Harlow a belly rub. Take care and thanks for sharing your journey with us. xoxox Heather🇨🇦
Thanks so much for sharing your story!!
I just got diagnosed a couple of months ago at age 20
Hi Izzy,
I was diagnosed with EDS type 3 through process of elimination gene testing at the age of 12. It’s now been over a decade since my diagnosis and my cardiologist, neurologist and PCP all say that with the new guidelines for diagnosis I’m in the hypermobile type.
While I had minor pains and issues with the heart and sprains at the time of diagnosis it wasn’t until I was 20 that I found it affecting other body organs and causing other health issues. As of this week I’ve been diagnosed with uncontrollable asthma, IBS-D, PCOS, POTS, have multiple problems with my nerve endings, also have several problems with my heart, and have daily dislocations of body parts (sometimes it’s the same and sometimes they differ). I had surgery last October on my knee after dislocation issues and they replaced my stretched meniscus. I’ll be honest recovery was horrible absolutely the worst thing I’ve ever experienced but if faced with doing it again(which I am-for the other knee and hip) I would 100% do it again. I’m still not as strong as I was before surgery but I’m so happy with my decision to go ahead and do the surgery because I now have a dependable knee and am not constantly worrying over whether it will dislocate.
So my post went really long but if you want to contact me to talk more about my experience feel free to do so.
Found out today that my dad has a lot of the markers for Marfan Syndrome. Thank goodness I’m getting answers!!!
Did you get the diagnosis?
Alex nope. I did end up getting tested for EDS, but I wasn’t diagnosed. At the time I didn’t have enough symptoms, but I probably do now. I was also told I could still have it and not meet the diagnostic criteria, which seems likely. I will be re-evaluated in a year so maybe then.
So sorry for your loss 💜
I have a lot of very similar symptoms as Jaquie…. I will miss her videos and her beautiful soul
Found you through Jaquie. I have hEDS, and a bunch of other stuff, but it's so interesting to hear how others with the same dx present so differently.
I miss her she passed away April 2019 Jackie rip
Hey Andy!
I told you the trick when I was young.
My anchors are spot on.
"I can't believe you are telling me this. I am the guy you are going to be tricking." "I paid for it."
The worst ones for me are the jaw, lower back, and especially my hips (they're the worst!)
...my gastroparesis used to be super bad, but it's getting a little better
Stone Johnson Vlogs can I ask is vasculitus part of this? My mother & aunt have it and I am starting to get big veins in my feet that hurt like heck! I have a fibromyalgia diagnosis and my mother lupus but we all wake up during operations and have a lot of joint pain and when younger we were super hypermobile. My thumb popped out yesterday. I am just double checking we don't have this. My neice has a knee condition where she does not have enough cartilage in her knee to run. Myself my mother and daughter also have knee issues. So did my nan. Gone now. Does this sound at all like eds? xx
Oh my gosh I didn’t realise metabolizing medications was part of Eds !!!! I’m undergoing diagnosis and this is an awful problem for me !
My hEDS gives me suuuper stretchy skin, chronic shoulder (including shoulder blade) subluxations, moderate hip issues but super chronic muscular issues including cramping, spasms, tearing and pain. First noticeable symptoms was cranial cervical instability. Eventually had my trap muscles surgically “relocated” essentially, and that’s helped a lot. What’s funny is I fit all of the EDS “standard symptoms” they look at except my fingers/hands are not that hypermobile (they’re more hypermobile than a “non-EDSer” just not as flexible as the Brighton score hands show...thumb to forearm etc.). For only that very reason, I had several Drs completely miss the diagnosis. I have since had a ton more issues go wrong, so now we’re very dang sure EDS is the culprit, but that was a lot of years wasted because the idea of what EDS “exactly looks like” in the medical community even is not broad enough. Thanks for bringing awareness to the varying degrees and symptoms of EDS, girls. :)
Can’t wait to read how others’ EDS symptoms present themselves. :)
Thanks for sharing!! Hoping that in the future there's a genetic markers for hEDS to make it easier
I have that exact same thing where I can sublux and not hurt! I have never full dislocated besides when I was little. It has seemed to get worse with my knees, they are very loose. I just saw a geneticist for the first time in February and he ended up taking my mom’s blood because of direct relatives with previous aneyursms. I really love watching your channel❤️
The worst thing is knowing that general and local doesn’t work well on me and telling medical specialists and being ignored and continuously waking up during procedures or getting an office produce and feeling everything. I got mirena iud and felt everything, I got a lumbar puncture and felt it all, I warn them it doesn’t work and get disregarded and end up with more trauma. I’ve woken up during two thirds of my general anesthetic procedures.
I just got diagnosed with hEDS but I also have osteogenesis imperfecta and other rare conditions
I suspect i have either hEDS or GHSD. I don't fit most of the gastro criteria but all the musculoskeletal issues and pain issues you guys talked about, especially the leg muscle spasms. I love your video's, it's somewhat comforting to know someone understands the pain i'm going through, and it's not just teen laziness, i'm 17 and i feel like my joint pain is constantly getting worse and my parents keep blaming it on how i'm too young for body pain.
Wish Jaquie got to talk more here.
Ooohhh that explains the muscle spasms for me 😂
I can't believe you get the elbow thing too!!!! I think I may have EDS, but I don't know. Especially since I found out about through the internet, and tried not to diagnose myself, but I kept finding all these symptoms which sound like symptoms and problems I myself have. And when I brought it up to my parents, they too were like, no, you don't have this disease and they started googling to disprove me, and they could not disprove me!! My doctor says it's a rare disease and since I don't have all that stretchy skin or thin skin, I probably don't have it and she's skeptical, but she did send me to genetics, so now we just have to wait til November, I guess.
Hey izzie wanted to share my story with you cause I find it rather common. I have always been hyper mobile in the joint department and been a dancer my whole life right after puberty hit my body went down hill and my joints became painful. After I spent 2 1/2 years researching this condition I went to a doctor and was diagnosed with gHSD at the first appointment. This made me happy cause j knew they were similar. In recent visits the doctor has admitted that I, with 99.9999% certainty, have hEDS though they aren't 100% sure or not and even though I have aced the diagnostic criteria they cant diagnose me with it. Like you say over and over "everyone presents differently". I am stuck in a rock and a hard place with diagnoses
Just wondering why they can't diagnose you with it if you passed the diagnostic criteria?
Thanks for your post, I just now realized I probably have gHSD also. I have a positive Beighton score and have issues with TMJ, migraines, shoulders, neck, lower back near tail bone, right lower arm pain, and knee pain. The lower back pain got awful when I was pregnant, things dislocated down there every night, sometimes just moving a tiny bit would make me scream and sometimes it was literally impossible to move. That was 20 years ago and things still pop in and out down there but not as severe or painful. My knees "freeze up" if I stay in one position too long, like sitting for a movie, after 1 1/2 hours, it takes me a few minutes just to stand up and is painful and I can barely bend my knees to get down the stairs. Ballet dancer here too. I don't have flat feet though, I actually have high arches and can bend my toes down and stand and walk on my toe knuckles. I had a lot of growing pains in my legs and knees as a kid too. Every variety of gastro-intestinal issue runs in my family except not gastroparesis. My daughter has autoimmune issues: celiac disease, chronic hives, angioedema, but neither her nor my son have a positive Beighton score like me. I pretty much have everything on that (except I'm 46 and can't quite touch the floor anymore.) Not really sure if all this means anything but it's kind of interesting and could explain some things maybe. Anyway, I hope you can get an EDS diagnosis if you have that and I hope you can get the help you may need.
Thank you for sharing! I'm hoping you can get the proper treatment and respect you need from your docs, with or without the hEDS title!
Forgot to mention that my mom also has a high Beighton and was also born with a hole in her heart. She had open heart surgery at 17 and also aneurisms and another open heart surgery in her 60's. I don't think she has EDS though. My son also has bicuspid aortic valve, among many other things but he doesn't have EDS either, but I just wonder if whatever caused these things was connected to other things, whatever they could be.
I have EDS as well. I’m 13, but I’ve had some problems my entire life but then when I hit puberty at age nine everything became so so bad. I would constantly be in the ER for injuries like sprain, subluxations/dislocations, fractures etc. I’d be there so much that the staff knew me. I don’t know which type I have yet but will be going May 23rd to do testing to find out. My major problem areas are my ribs which are literally never in place, knees,ankles, my wrists which are really bad, my shoulder and recently my hips. My doctors also think I have POTS, Mass cell because I randomly just break out into full body hives or just random patches, and a GI problem as well.
Thank you for liking my comment! I actually just fount our today I have POTS as well.
Have you had trouble with insurance? I'm afraid to pursue a diagnosis because I don't want them to say "oh that's a pre-existing condition"
Yes, I had! I have so nany pre conditions now that it is not worth it to pay for insurance... but i thinks this depends what country you live in...
I have hEDS too! My worst dislocation has been my rib dislocations (rib slipping syndrome). I’ve dislocated almost everything except for my ankles, elbows, and hips at this point. It’s such a hassle!!
I don't have super stretchy skin but my most stretchy areas are in the same places as you!! (Arm and neck) i also get the muscle pain and spasms which seem to get worse with my spine problems and autonomic issues. I also related to so many other little things throughout this video! As far as differences, I have Chiari which is anther co-morbidity of EDS and was actually diagnosed with Chiari at 6 and POTS at 8! Yet my gastroparesis only kicked in when I was 15. My worst "joint" is my neck. I've had three neck surgeries to fuse it over 9ish years because it just doesn't like to hold itself together long term lol. My neck and the rest of my spine are evil in general, they hurt like crazy and cause nerve and muscle pain/spasms. My knees hyperextend like no ones business and they hurt a little but not that. My ankles and feet are relatively okay BUT I can never ever wear anything other than very supportive sneaks made specifically for over pronation with out severe pain. My hips randomly sublux along with my SI joints, my shoulders locks up in a Charlie horse like cramp to prevent them from dislocating but do occasionally pop out. My wrists are pretty good however my hands are a mess😂. It's so interesting to see all the differences and similarities from person to person I absolutely love this video❤️.
Occipital headaches/neuralgia seem to be universally troublesome
I learned more things in this video than in my actual biology class. Very interesting
Have you herd Jac passed away but not from her disease she was passed away because her intestines grew around the feeding tube and it cut off blood is she had just signed on her house that very day
Rest in peace jaquie😭❤️
Barely even feel pain from Eds really it’s insane my metabolism is always in hyper mode can’t have periods and dislocate joints but no pain
That intro was exactly how i was feeling yesterday
I actually presented with shin splints at 8 years old where the front of my shins just felt like they were shattered all the time and then I was 14 when I had my first this location but I wasn't actually given a diagnosis until I was in my 30s because I kept having to be going to different doctors for each things separately and nobody knew exactly what was going on and I didn't get my diagnosis for any of my GI problems that I have been going through ever since the age of 10 until after I got my EDS diagnosis then people started believing that I actually had digestive problems I have gastroparesis Mast Cell Activation Syndrome as well as having signs of having pots but being re-evaluated and I recently suffered an injury that has made me paralyzed from my L4 and L5 down which actually has cut my pain in half now since I can't feel my legs anymore and they were my biggest source of pain whenever it rained now I only have pain in my back when it snows and then my other joints pop out willy-nilly
Thank you for sharing! Wishing you good health
When i get my period it makes my hips and lower back seize up and hurt, plus ill have cramps in that area, my period isnt that heavy luckily bit for those few days im in so much pain i dread it
Perhaps ask your doctor about continuous birth control? I know that when I was young and I was going on holidays, etc. I would, with my doctor's permission, go straight into the next package instead of taking a week off. I know it was fine to do it that way for me, but I don't know about long-term if it is ok. Just a thought!
Me too
I didn't develop mast cell problems till I was 28. My mum developed her "alergies" when she was the same age. Me, my mum and all 4 of my sisters have hyperflexability. One of my sister has be diagnosed with EDS.
I had no idea mast cell was related but makes sense.
You too girls are so funny, your only 21 and of course it your whole lives, which are still very young. Anyway, I'm 57 and just got diagnosed. It took me doing my own research and getting a genetic test done on my own. The Dr. Just couldn't seem to make it happen, he said that there was a two year wait to get into msu university hospital. It has affected me my whole life too, although everyone just thought that I wanted attention. I used to pass out for no reason. Riding my bike, pass out, putting dishes away, pass out, when I went to the hospital, they were checking me for drugs! Okay, we know your not being truthful, just tell us what you took. Are you kidding me? A fourteen year old kid! So now I have heart problems, my heart races for no reason, I used to have severally low blood pressure, but now it runs high, but when I take meds for it, it makes my heart beat too slow and then I'm constantly tired. My hips and pelvis are always out of place, going to a PT helps for a minute, but as soon as I leave and sit in my car, I'm out of place again. And I can actually feel it falling out of place, it is so painful, but I can do nothing to stop it. I feel like I'm going on forever, but I'm so glad I found your u-tube channel because it does help to know that there are other people out there with it. I feel so isolated. 😕😕
I'm currently going through the process of being diagnosed, I'm 14. I also have gastroparesis and muscle spasms
Thank you for sharing! My pt is 99.9% sure I have heds. If you don’t mind me asking how did they make the final diagnosis for you guys?
I did a lot of online research and found a doc who specialized in EDS. If you can't find an EDS doc then the best thing is a geneticist!
I've had sent them since I was 12, but I was diagnosed three days after my 15th birthday. I'm no longer able to play my favorite sport, because I passed out. I have POTS in hEDS. I also have a mild case of gastroparesis and my doctor said I should be careful because it might be likely that I have mast cell.
_OoOps. Kidding_ I don’t want to get diagnosed if it means I can’t dance anymore
Knee surgery in EDS is tricky. Hoping yours works out really well!
I have hEDS, and had a cancer surgery where they ripped through all of my abdominal muscles, and I have an 18" scar running from my breastbone down to my pelvis. It took me many years to recover from that. They didn't know I had hEDS back then, or they probably would've done chemo instead of that invasive surgery.
Hi girls. So I swear I have EDS but I
In south Australia and I got told I have Fibro and hypermobility Syndrome. Fibro is pain perception. My tissues just constantly feel sore, hot and aches and light touch is not an issue but a massage kills. When i had c-section I was told my tummy has lots of bands and adhesions. I have Pots, Me:cfs, my bowel prolapsed In childbirth, I had hernias as a child, i can do all bendy stuff but am now 37 and have a fused spine. Would u push for the diagnosis if u were me? I worry about my kids. My grandma on dad’s side that has passed almost had velvet skin that hung off her. She was skinny as a rake. Had a couple strokes and then died of primary spinal cancer. I wish they had the genetic code. Do u ladies feel like you’re unable to relax as u hold ur body in place, without really noticing? Xx
I also wake up during surgery. once was closer towards the end, when the tube was being pulled out of my throat, I woke up too early and I gagged and I remember feeling really panicked. My throat was pretty screwed up for awhile from gagging against the tube being pulled.
hEDS peeps have gastroparesis more often because collagen helps the stomach make movements to process the food but if it can't make the proper movements to pass through the food it can't digest it and it causes major abdominal problems.
I sublux my shoulders a lot but it never hurts.
I also have EDS and am interested in genetic counsleing!!!!
My brother has bad knees…my knees are weirdly one of my best…my hands, shoulders, neck, back, wrists and ankles are the worst. My skin is not stretchy…but extremely soft and velvety…very fragile…so many scars….I rarely spontaneously dislocate…and if I do…I quickly relocate on my own…constantly having subluxation…but mostly unstable joints causing mild spraining and swelling. Seriously bad POTS- (my heart rate goes up to 160s-170s when standing or showering without medication) I have flat feet and hammer toes…I have long lost most of my Hypermobility and it had been replaced with stiffness (scar tissue) I have a plethora of other related health issues. Many are associated with HEDS… I have PIDS, RPC, mild RA, very slow digestive motility and tons of other issues… I wasn’t diagnosed until my 40s…It was the worst-I tried to act normal and damaged my body much more than I would have if I had known…I suffered and cried quietly because if I complained as a young adult about pain or illness…I was labeled as: “attention seeker, lazy, whiner, hypochondriac, drama queen….etc.” I was conditioned to suffer in silence - I had to do the research and tell doctors my diagnosis and finally was able to get properly diagnosed after spending every nickel I made working and thus abusing and destroying my body on doctors treating symptoms or being dismissed…the dentist…my teeth just decayed no matter what and I begged dentists to pull them…but no…fillings and root canals and crowns …. $$$$ and pain and now have no uppers (dentures)
The elbow thing you mentioned at the beginning, my knees do that. Did you ever find out what that was? It feels (to me) like its subluxing...
Izzy have you looked into CIRS EDS connection?
I was 50 diagnosed. What a life
Joanne Duval I’m 53 and my rheumy just now referred me to a Geneticist last week. Get this...he told me I was too OLD to be diagnosed and said that my stiffness now is offsetting my hyper mobility! I have had symptoms since age 12 with growing pains, I’m double jointed, tons of other issues. He also told me there was no genetic testing to diagnosis it. I am lost now except going back to rheumy coz of my trigger thumbs bad along with hands and all of my other joints. He told me I was full of inflammation though. Ugh!
I sort of had the same thing happen to me for Triple X syndrome. I have enough symptoms for the doctor to "unofficially diagnose" me but wouldn't do the genetic test because he didn't think I needed to know unless I was getting pregnant and I wasn't. I just wanted to know because it would give me a reason why I have a bunch of other things. It would have been nice to know, oh well. It feels like having to call the alphabet the abcde...but not "the alphabet." I know it must be much harder to deal with EDS though. I hope you can get what you need to help you anyway.
Kirsten Courtney thank you for your input. I am like you with reasons for wanting to know but it’s like that doesn’t justify enough for them to go to the trouble or put forth any effort to give us OUR answers. I want to know why I have had SO many different unrelated things wrong with me my ENTIRE life, whether there are any treatments for me at this point in my life. Then, if I had to guess, both of my daughters have some form/forms of EDS or other genetic diseases.
Prior to diagnosis I lived a Vascular type EDS life. I had uterine rupture, and artery rupture during surgery. Anaesthesia did not work for the emergency c-section. I wish I knew that the hernia surgeries which followed the previous surgeries would have led to complications because the surgical team found lesions from previous scars which glued to my other organs. Today the meshes feels like they are unstitching. Ultrasound shows a deformity in the mesh. Suffered with vestibular migraines which affects the cerebellum veins daily. It’s been painful and miserable.
Thank you for spreading the word. I was diagnosed 2 weeks ago and I will be getting the genetic test because vascular type appears to be common in my family.
Thank you for spreading this awareness. Take care of yourself and body because dislocation May cause irreparable nerve damage
Joanne Duval God bless you coz you have been through a lot in your life. I feel like my parents parents may have had Vascular Type due to all of the hemorrhages and aneurysm in their lives. Then my maternal grandmother was always being “cleaned out” due to adhesions.
I always thought it was just joints learned something new. Have either of you used KT tape? I saw Martina (Simon & Martina) used it & wondered if it was something you've tried & how it works.
yes, KT tape helps my knees and I use it ALL the time!!
Hi. Thanks for the video. It's so interesting how EDS can show up so differently in different people. I have a question for you what kind of doctor deals with EDS? I think I might have it and I didn't know what kind of doctor to go to. Thanks a lot. I hope you're having a good day and not in too much pain.
A geneticist
@@dustysimmons3024 thanks!
My daughter was diagnosed with hyper mobility syndrome a few years and from watching a couple of ur videos (as they come across) she has EDS but her drs keep telling me she dont.
I've been diagnosed with hypermobility but think I may have heds, do I have to have bendy fingers because mine arnt but they are very stiff but dislocate alot. I have many gastro problems and knee and hip dislocations to point where I cant walk. I'll be going to physio soon so hoping that helps.
This is obviously very late to the party but funnily enough, I have the trifecta but don’t get as effected by eds & have more symptoms of dysautonomia & mcas than anything else
I have the elbow clicking and when it hurts after clicking its most likely the ulnar nerve snapping in and out of place
My eds symptoms were mild as a child except for excruciating legs cramps. I was just "very flexible". I made it through puberty ok. But when my hormones shifted again in my late 20s (combined with the use of cipro which had not yet been found to be bad), my symptoms went haywire. By the time I hit 32 I could no longer work. Hormones can be a killer.
shywolf4 my story is very similar apart from the fact that my symptoms did start getting bad until after an emergency appendectomy during my mid 20’s. I had complications from the anesthesia and that’s when my doctor and I realized there was a lot more going on than we realized. I’ve always felt so strange about not being as aware as a kid I just always thought they were “growing pains.” I stopped gymnastics because of the pain. Now I know it was EDS all along.
Strongsand yup. Mine worsened with hormone changes as I aged. But what pushed it over the edge to disabling was a year long chronic ear infection (non eds related) and the subsequent antibiotics and surgery needed. I was diagnosed with fibromyalgia for years.
I saw a new doctor because the one I had been seeing had me on so many meds I felt like a zombie. The new doctor kept asking me if I has "this" or "this" or "this" etc. my responses were "doesn't everyone?" Nope. That was how I finally got diagnosed with EDS at almost 40. If you do not know something is a symptom, they why would you mention it to your doctor? Lol.
The anesthetics 🤣 I have that, I think it's caused by the MTHFR gene or something like that. My dentist did not understand when I said the anesthetics wouldn't work, the 16th century tooth extraction was really fun.
The hips too, mine dont hurt they just feel off and makes me walk funky, that started in high school when I played football, never knew what was wrong and it didn't hurt so I'd just keep playing... probably not the best idea playing football with a subloxed hip though...
Awww jaquie
Oh my god I feel things shifting inside of my wrists and things move in and out. Things feel like a dislocation and then I don’t have any signs of dislocations after that. The thing I have issues with is hyperexstention.
Does your knee do the hyperextension at random ever? The knee that needs/needed surgery?
Hi ladies I found out that I have hyper mobility when I was 15 years old because I did a cartwheel and it went wrong my right knee came out the hospital said can you band your thumb back and I can So that is how I found out when I was 26 years old I was playing football with my younger brother it happened again but it came back in I still want to hospital with it and 2019 it happened to my left knee but I did not need to go to the hospital this time so now in my life I am going to be more careful with my knees 😀
I'm recently diagnosed with POTS and hEDS (like you Izzy, my doc thinks I have mast cell but I'm not sure). It's such a confusing world to be in! I am 25 and it is CRAZY to think I beat myself up for being unathletic and "lazy" my whole life (I'm 25), wrote off my own pain, and now realizing that I wasn't crazy and that there is something actually wrong. Do you have an email? I would love to talk to you about the EDS stuff I still don't understand!
just for safety reasons i don't give out my email or number but if you have an instagram, message me on there! my username is just izzy kornblau
4:41 so me hahaha
Is EDS a progressive illness? I bet the answer is "sometimes". I wish you good luck w your knee surgery.
ooooh hate to be all basic but...sometimes 😂😂😂. It really depends on the person! Thanks!!
Yeah, I think it definitely depends on the person. My doctor says he sees me improving in the future.
It’s not inherently “progressive” or “degenerative,” per se. Like, your collagen won’t get worse. Your connective tissue could just have further damage done to it, new manifestations can pop up, etc. OR in some people their health can overall improve w/ proper treatment, and sometimes they do stiffen up a bit with age, though again that doesn’t happen to everyone.
Mike MakesRight l: As a 55 year old female EDSer, most definitely yes. We all break down as we age, but with EDS it’s much more dramatic. Which makes perfect sense. Sorry, but it’s inevitable.
B D - that's what I was afraid of. I follow Hannahr916 on YT and IG and she is going through absolute hell w her digestive system. Such a beautiful person, like Izzy, shouldn't have this.
Tenho todos os sitomas só n tenho a pele elástica e os dedos também n são mais os sitomas de dores é igual 😢 medico diz q n tenho n pq n tenho a pele elástica 😢
EDS (not sure what type) runs in my family and I have been diagnosed with joint hyper mobility my problem areas are my neck and my legs especially my knees which are rotated in different directions. I've been told I may have EDS but I'm not sure how I can go about getting diagnosed. Can anyone help with this?
I was watching someone else the other day who has serious inward and outward signs of EDS so I was sure I didn't have it after watching that but seeing how your cases are presenting now I'm wondering if I should get tested. I'm hypermobile in my joints and my jaw does that thing you were talking about with your wrist. I can't open my mouth real wide because it will get stuck and if I'm biting into a sub it will crack and hurt so bad when I close it. I push rib heads out all the time when doing floating splits by pushing my shoulders together and opening my chest. And since I've been a small kid I can pop my hips in and out. Now they just slid out if I stand with weight on one leg or if I do certain exercise movements they will pop in and out. My daughter can pop her shoulders in and out the same way and one of her thumbs dislocates. I was diagnosed in 2003 (by the old protocol) for gastroparesis and have suffered my entire life with digestive issues. I was at the Dr the other day and didn't mention EDS testing because of that other person's testimony of their journey and now I'm regretting not asking after seeing this. I constantly injure my left leg in splits because my joints are more hypermobile than that leg can support. I am 39 and can go into right splits without warming up. I pass the hypermobility tests and my physical therapist also confirmed I have hypermobile joints. It's the other things you guys mention that make me wonder if it's more than just hypermobility. I'm more concerned with my daughter having it if I do since she has a lot of the same characteristics.
If you don’t mind that I ask, what made you or your doctors suspect you had EDS in the first place?
in the past, many doctors had actually noted that I was hypermobile, but when I got bad at 15/16 we actually suspected autoimmune diseases. It wasn't until I got diagnosed with gastroparesis and started having POTS symptoms and have my loose joints cause more problems that my doctors and I started thinking it could be EDS. I did some research and mentioned it to a lot of my docs and all of them were like, hmmmmm, that sounds like a real possibility...let's find a specialist. and i found a specialist and got diagnosed.
Izzy Kornblau oh wow! thank you for sharing 💕💕
Miss her jaquie
I love you Jacquie. I’m going to miss you
i haven’t been diagnosed yet, but i’m sure i have hEDS. i’m 15 and my problems have been getting worse. i sublux my shoulder every day (it’s so annoying), my pinkies sublux constantly, my hip has subluxed a couple of times, i have reaaaally bad knee pain, and i can crack and pop almost all my joints (idk if that has to do with eds, but it’s annoying and distracting and sometimes painful). and i totally get the elbow cracking!! it hurts SO BAD and i have no idea why it happens. i’m going to PT for my shoulder subluxations, so that’s good. but every doctor i go to says “you just have extreme joint laxity” and i’m like,,,, well then how do you explain my POTS symptoms????? and my muscle pain???? and my flat feet??????? i’m fighting to get a diagnosis, wish me luck!!
ugh girl I feel ya. I'm really wishing you the best
My elbow does that, it really does hurt. My jaw gives me a lot of problems, my face gets really tense which causes my jaw to hurt like a b. My lowerback, neck, and shoulders and ankles are the worst when sitting or walking. When my feet are flat on the ground my ankles hurt so much.
My wrist and ankles also click/crack back into place. My hips and shoulders subluxate.
Adding a comment about how mine affects me! I have a lot of the classic hEDS symptoms, but I have extreme rib/chest wall problems (all of my ribs on the left side sit slightly out of their joint sockets), my balance is very visual-heavy due to such flexibility (aka if I close my eyes I almost fall over). Also circulation! My arms fall asleep all the time because my sub-clavicular artery gets closed off by chest tightness.
The rib-chest thing sucks, but I also get spasms in my lungs and chest wall (like the spasms you were talking about) where it feels like there’s a Charlie-horse when I breathe! That one stumped doctors for a long time lol
She will be so missed. I’m so sorry you lost your friend.
I can pop my shoulders out without pain and I used to to it do creep out my friends.
Can you clarify if you said "pots" or "pods"?
The Poeletariat she said POTS :)
@@Jlynne3323 Thank you :)
I have HEDS but both my mother and father have two diff types. My mum is classical like BUT only I have Dysautonomia POTS, OI, OH [it fluctuates), subluxes and dislocations, I have gastroparesis and MCAS. My sister on my dads side seems to have Dys now too but yeah hello help lmao
Great video
i’m late to this video, but i’m currently on a journey to getting my hypermobility diagnosed, and the biggest problem i’ve been running into is my lack of extreme visible hypermobility (my elbows don’t go backwards, my knees only kinda do when standing, my thumbs almost touch my arm but not fully, etc) but i have very frequent subluxations/dislocations. i usually sublux like once a day at least. but because my joints don’t visibly bend backwards, doctors are quick to dismiss any diagnosis outside of fibromyalgia. i was wondering if anyone has experienced this at all, and if so what tips could you give? it’s incredibly frustrating because fibromyalgia doesn’t explain that at all, but because i was already diagnosed with it they just assume it explains everything
Yeah tbh same. I'm very hypermobile, but two of the joints that are my elbows and the backs of my knees, and so I only score a 5 on the beighton score. and sometimes I can't even touch my thumb to my wrist. It changes day to day. But I saw a specialist who assessed my overall hypermobility as well, plus I passed the criteria for hEDS, so that's how I got the diagnosis. You need to find a doc who is very knowledgable about EDS and show them all of your hypermobility throughout your entire body as well
Izzy Kornblau thank you! i’ve definitely been struggling to find someone who knows a lot about EDS and it’s been making me feel like i’m just making this whole thing up. a friend of mine mentioned a geneticist she went to who was really knowledgeable and diagnosed her, so i think we’re going to try to see her as soon as we can
My problematic areas are my ankles
I’m 15 and I’m getting tested for Eds oof
Very helpful
Btw since the first time I watched this I've been dx with heds pending genetic testing. In also going to be tested for pots. I've been sick most of my life and its sooo nice to finally have a reason. But now I struggle with "not being sick enough" to deserve my dx (mostly in my own head) since most of my issues are internal.
My daughters became more prevaalent in a random 8mm kidney stone outta no where. At age 11