The campaign for real healthcare for Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder in Ireland. 💕 My name is Kitty Colbert, I live in Ireland, and I have Hypermobility type Ehlers-Danlos Syndrome - hEDS (as well as a few of the comormidites). Please sign our petition on the website www.eds4ire. Tell your story -use the hashtag #EDS4IRE on social media for a share/ RT. Here you'll find videos relating to EDS/ HSD, disability issues, with a particular focus on the newly diagnosed and those living with these conditions in Ireland.
[Disclaimer: As always -I am not a medical professional and speak only from a patient perspective. As I note in all of my videos, only a trained rheumatologist can diagnose EDS and HSD, and give you advice on what tests and treatments are best suited to your unique case. My advice is simply on what treatments exist out there, and where to access care and support. For further information see www.eds4ire.ie]
I needed this video ❤ I struggle to say I’m subluxing because I’ve always had this and didn’t know what it was until I was 40. People tend to discredit you when you start saying it “all of a sudden” after diagnosis. Thank you for the validation 👏 and reassurance that others feel weird saying it out loud as well.
I get lots of shoulder and spine subluxations. It causes so many symptoms and doctors aren’t listening and tell me you can’t feel subluxations or try to just give me muscle relaxants even though I’m intolerant to them. My hips get tendinitis a lot too due to the hyper mobility in the joint. Even get subluxations in places that shouldn’t sublux like in my foot or the upper arm in the middle 😅 so I’m trying my best to just manage on my own without medical treatment unless absolutely necessary but even then, I have to really fight to be listened to
Thank you for this. I have Chiari Malformation as well and am very symptomatic. I’ve been worried about birth when I have children. This gave me a lot more insight and made me feel way less alone. I want to ask my doctors about EDS as well. I never thought to do that, so thank you. My knees pop out all the time and it’s so painful !!
@@anntunaley9974 carpometacarpal joint. its the bottom-most joint on your thumb where the thumb connects just past your wrist. its the one buried under the big pad of flesh on your palm on the thumb side. its really tricky to brace especially for movements where the thumb moves across towards the other side of your palm, as when you are gripping a handle. you can see this movement if you touch your thumb tip against your little finger. there's special braces that give support across the lower palm that help versus ones that compress the thumb towards the rest of the hand but don't really support that in-turning movement. both have their uses but the first kind tends to be more likely to be helpful for most peoples' joint pain & subluxing, the other less so. CMC taps/ k tape really doesn't help this but it can be good as compression for pain mitigation. for the support you can get a pic of a decent brace by googling 'push ortho thumb brace cmc'. but if you need a brace for this ideally get advice from an OT or PT if you can. hands and feet are complex as fk and its easy to make things worse by getting bracing wrong as I've found to my cost
It happens to me all day everyday but according to my dr.’s, I can’t have EDS because no one in my family has it. My hip just popped out while I was getting into bed earlier. My neck, & shoulders are always popping out. It makes me dizzy & nauseous & I have dysautonomia symptoms & mcas symptoms but my doctor thinks I have all 3 but refuses to diagnose me with any of them.
Do any of you have flares that cause significant pain in your joints peripherally? Sometimes to the point of not being able to move them, or move hem in certain ways, yourself? I have vascular and hypermobile EDS, POTS, and MCAS. I’m still learning about these conditions having been relatively newly diagnosed and not having found a doctor yet that knows enough about my conditions to ask questions or get proper treatment. When this symptom started, it was in my knees. I would just be laying in kind of a fetal position watching tv and suddenly my knees would have severe pain and I was unable to straighten them. A family member would have to straighten them for me while I bit and hollered into a pillow, and I am not one that hollers in response to pain,despite ALL of the severe pain I’ve experienced. Then it moved to my shoulders, but it was always just one set of peripheral joints, like either my knees or my shoulders…never both at the same time. However, currently it started in my shoulders, then added my elbows, then my knees, then hips. It’s currently doing that same thing is 4 joints on both sides of my body. My pcp recommended trying Aleve, which I don’t expect to provide much if any help. If this sounds familiar to any of you, I’d greatly appreciate any advice regarding what you do or any treatments you’ve received. I really don’t know how much longer I can endure this level of pain and inability to function, even to walk myself to the bathroom. Thank you in advance.
My Neurologist’s the one who Dx me with EDS, he had me go get bloodwork done, after I told him about my mom and family having Osteogenesis. I have Classical EDS. It shares the same genetic mutation with O. I.
I have EDS, and my joints sound like they’re made of Rice Krispy Treats. I have subluxate my wrist just from washing my hair in the shower. Thank you for sharing your story with me!
Just got good pain manegment for my muscular pain and today for the first time i can actually feel the partial/dislocations this is super crazy. I always thought my condition wasent that bad from medical trauma and just thought my joints were loose but no its like full dislocations this is so validating
Ive just received my working dx of hEDS, next step is genetics, but i learned (by talking to a friend with hEDS, that the weird feeling i get in my elbows when my arms hang down is actually my joint subluxing, just dropping out if place 😂 i thankfully havent had a full dislocation that I know of but the subluxes happen daily
I'm on the waitlist for the, apparently one and only in my state, Dr that can actually diagnose me, one year in to a 4 year wait. I'm having a time trying to find ways to manage in the meantime. My shoulders sublux and then get stuck, and won't pop back, but when I finally give up and go to the er, it pops back on the way or while I'm waiting, and then I feel dramatic and the hospital staff seem....let's go with skeptical.
Having hEDS and having a dozen of them, big n small. I find I hold colour very well. Artists are shocked when they see the 20 year-old ones because they look fresh. And I heel very quickly, within a week in most places, and I don't scab, well only on yellow n red will I scab otherwise I'm peeled n healed within a week, the skin is a bit tight but the collagen is new and takes a minute to settle down. Colour tattoos remain bright and colourful for a very long time on me. And it does depend where u choose to put them and ur artists. They have to rub at ur skin to remove ink and that was as bad as the needles for me.
I don’t have a diagnosis but I do have POTS and ME so it’s not an unlikely diagnosis. I go through phases of my joints being more like this. Is this a thing in EDS? Eg shoulder, knee, ankle being ‘clunky’ for a while and then not? Or is this more likely inflammation or something secondary to my other health issues? I can hear my joints clicking back into place along with the pain. I’ve only fully dislocated my knee.
i don't know if this will be of any use to anyone, especially since i didn't get any sort of diagnosis, but i saw dr. john ryan in cuh and he seemed to be aware of classical eds. i wasn't up front with him in saying i think i had heds or hsd because i was so scared of being labelled as a hypochondriac, but i told him my symptoms and he did a quick check for stretchy skin and scars, and a not very thorough beighton score. i wish i could give some better information but i was really stressed and inarticulate in my appointment so i don't know if my experience would be the norm. i just thought i'd comment anyways since it seems like he knows at least enough about eds to diagnose the classical type. he sees public and private patients, both based out of cuh and an initial private appointment costs €250. edit: cuh means cork university hospital btw
I totally get the clunky pain in my hips! I've been trying to do leg raises to help my knees which click a lot but it's led to my hip clunking every time I do it. My right knee is the worst, it hurts or there's a pressure inside it and I have to bend it to make it click which makes it feel better for a while. It's just so constant. I have to click it hundreds of times a day, wearing compression sleeves helps a bit but not completely, same with braces. It's just constant discomfort.
Super helpfull video, thank you! Sadly the music was quite disturbing because I also have hearing problems and it was super hard to concentrate on your voice.
Thank you for this! I have had many comments over the years about being hypermobile but am only now trying to get it sorted because I know it can be such a battle. But I realised I had been subluxing. At the moment it's my knee and it kind of pops and then I have immense pain and I have to lie down with my knee supported (as they have the tendency to slightly bend the wrong way on soft surfaces). But this feeling also happens in my hips, thumbs, big toes, wrists, shoulders and my neck. The fact that my neck is doing it is making me wonder whether I have got it wrong about subluxing as that just seems too crazy. But is that possible? When it happens it is so painful that I feel sick and once almost fainted. Then for days I have to lie straight down until it heals. But it kind of functions and doesn't click back in noticeably. My shoulders and hips definitely do that clunky thing! X
Hi do you wear anything on you hands or wrists while sleeping? I tend to sleep with my wrists and fingers at extreme positions and then my arms go to sleep or get tingling. Trying to find out what would help me. Thank you!
i know this is an old post but you can purchase braces meant for carpal tunnel and the nighttime ones will keep your wrist and hand in a neutral position
I have Chiari budd syndrome... And I am 2 month pregnant . Dr told me for liver surgery but the priority is baby and pregnancy .. I am so scared as my dr already told me about future complications. Will you please talk to me and suggest something..
Dear girl can i please offer some advice. There are some of us who have hyper sensory issues. This means if there is any noises while someone is talking or more than one talking, we are unable to make out what is being said. Hearing wires get crossed. And you have such a lovely strong accent, along with the music you added, i cant make out what you are saying at times. Best of luck to you.
Hey, I have EDS also and Fibro. I appreciate your video greatly as I'm trying to get better braces and doing more research. My right leg is about shot (Bone spurs in knee and ankle and half the necessary cartilage) and I have found out from research that if my Ortho would have assigned an unloading knee brace it keeps you from needing surgery longer. Just a thought. I totally agree with brace for pain, but if you have an injury, I suggest bracing for surgery and further injury avoidance. For my shoulder, I've had the best pain management with KT tape. Do you live in a big area?
I'm looking for advice. I have EDs and have a scar on my arm which I'd like to cover up with a tattoo. This is very fragile skin, and you were talking about tearing. My skin never teared, but I do have this typical EDS-scar. What do you all think?
This video was so useful! I've been describing my joints as clunky for a long time, and recently I've been hesitant to suggest my shoulder is subluxing as it never stays out of place. But it makes sense after suffering an injury a few months ago, it's become less stable and is a weekly occurrence. For me it's a nauseating pain that immediately knocks me and I need so much rest afterwards
I have type 1 eds, where my skin tears easily and I was thinking about getting a small heart behind my ear to test how it would be on my skin. I’m weary about my skin tearing and was wondering if you have any advice on this? X
I have no idea about any of this so feel free to fully and completely ignore what im saying Maybe trying a vitamin a moisturiser on the area several times a day since vitamin a is known for boosting collagen but ik collagen being different is a huge issue in eds so idk whatd help Jojoba oil is also the closest to our natural sebum so its a very good emollient. This ofc wont even get close to reversing your eds but maybe giving it extra moisture and drinking more water wont hurt the fragility and maybe help the tiniest bit? I hope you are able to get what you want 💗💗 Deffo recommend googling this tho!
This is a nightmare. Completely unacceptable you should have absolutely denied the epidural..but I realize you were so stressed ..I'm so sorry that the treatment is so archaic ! Something has to be done thank goodness you are a wonderful advocate..hopefully you can sue for the atrocious treatment you and other zebras recieved
I have had bouts of symptoms all my life but finally diagnosed in December last year at age 46. Having decompression surgery in June. Quite scary but it is good to watch videos like yours and others as there are very few people to talk to who can understand. Thanks.
Thank you for a really informative video. I’m in the process of getting a diagnosis and EDS is on the table. I’ve always thought I don’t dislocate or sublux but having given it more thought, I’ve definitely experienced what you describe (sharp pain followed by throbbing or just joints feeling like they’re slipping) and have had multiple experiences of a knee giving way underneath me... definitely not normal! I need to bring this up when I next see my doctor 😬 Thanks again!
This info was super helpful! I know this is old at this point but I thought I’d pop this in the comments. You did get neoprene right a few times! It’s like “Knee-O-preen” as far as I know.
I have had Chiari Malfunction since I was two, I am now 24. I had brain surgery at 7 and it went majorly wrong.... three cardiac arrests, two whole body blood transfusions and 8 days on life support. I have most of the same thing you have too. I have lot of medical issues and problems so I am used to it. Stay strong!!
You are really doing a great disservice to those really harmed by “vaccines” (aka universal sterilization program) along with other pseudoscience fallacies of the mainstream “medicine”. Lol you’re “vegan” no wonder you’re deceived by one of the biggest mainstream lies and myths! You are probably deficiency in all the basics vitamins and nutrients known for over a hundred years especially the fat soluble vitamins A, D, E, & K2! Humans are, by every physiological characteristic and biological classification, omnivores just like canines, felines, etc! We need to eat a variety of meats, dairy, plants for optimal nutrition. We also need to be out in the sun at least for a lot of the day in the summer for vitamin D and vitamin A activation from its ultraviolet radiation! Yes, radiation is essential to biological life! No way around that! But it’s not the only I would say. There are minerals too and phytochemicals for our epigenetics we have no clue about yet and only beginning to grasp the necessity of! That and the microbiome we will never understand completely I think.
