As someone who is officially diagnosed with EDS by a geneticist, I would like to (respectfully) correct some of your misconceptions on it. It sounds like you are describing HSD, hypermobility spectrum disorder. EDS is a genetic condition that is diagnosed based on bloodwork and specific gene mutations (yes, even the hypermobile type has a gene now - newly discovered in June of 2021 by the Norris Lab). EDS is a multisystemic connective tissue disorder, meaning it can affect many areas and systems within the body. Depending on which type of EDS/gene mutation you have, your symptoms will show up in other areas. Certain subtypes of EDS (there are 13 + a couple of extremely rare types) don’t even present with hypermobility. Hypermobility is not that uncommon. When it is present in multiple certain joints of the body, along with multiple other comorbidities, then it is looked into more deeply. The range of issues that come with EDS are extensive. A lot of people (including myself in the past) are bedbound. They can’t move without dislocating joints. There are other issues that include the autonomic nervous system, the digestive system, the brain, and many other areas. The pain and ailments that are experienced each day are not normal compared to those who are just hypermobile. While it is true that hypermobility causes damage to the joints eventually, it’s the presence of subluxing or dislocating joints constantly that increases the joint pain and damage in those with EDS. Another note I wanted to touch on is your comment about seeking a diagnosis and it being just a name for a bunch of symptoms. EDS is genetic and diagnosed based on specific gene mutations. I was not seeking a diagnosis. It was during a visit when my orthopedist referred me to a geneticist because he was familiar with the syndrome. He could not diagnose it himself but had to send me to a geneticist. At the geneticist, I was given echocardiograms and bone density scans and PT. EDS is known to affect the heart, even in subtypes other than the vascular type. EDS can take someone’s life by prolapsing organs and rupturing aortas or other heart defects. It’s important to monitor these in one with EDS. Furthermore, PT (when done by someone who is knowledgeable) can help increase the quality of life in one with such extreme chronic pain. Our muscles are tight when our joints are so loose but we need to learn how to strengthen the correct muscles to also help our joints stay in place. I’m sure there’s more to add because EDS is so complex, but I’ll leave it here. While I’m sure your intentions were honest and purely motivated, they could hurt someone who actually struggles with EDS. For more information, Disjointed is a wonderful book for those who suffer with EDS. Also, Understanding Hypermobile Ehlers-Danlos Syndrome by Claire Smith is a wonderful book for recognizing the multiple ways EDS affects those who suffer from it. I hope this came off as respectful as that is what I intended.
@@Piecesoftheshadow the Norris lab found at least one gene and is continuing to do testing on it/them. Not everyone is using the gene as of yet, but they did find it.
For someone with hypermobile EDS that I've been struggling with for nearly 40 years "just hypermobile" is not normal & can & does cause dislocations & chronic pain that is debilitating (often diagnosed as fibromyalgia) it is not diagnosed with a blood test that other EDS forms are which all have very specific differences. Being "diagnosed" which hypermobile disorder i have has not help me receive better/different treatment options at all. If anything it gives you a label so doctors don't dismiss you like you're neurotic but it isn't helpful. If it was vascular EDS etc it's a different story.
@@beebee1676 About 20% of people have hypermobility with no pain or other symptoms. This is just hypermobility that is benign. Then there's hypermobility that causes pain but doesn't cause systemic issues - just the joint issues. This is HSD aka hypermobile spectrum disorder. Then there's the genetic one - hEDS, which is what I have. In June of 2021, they found at least one gene that may be the cause of hEDS and continued with studies for over 6 months. This gene was found by the Norris lab led by hEDS patient and lab researcher, Cortney Gensemer. I read and kept up with this research for over a year and wrote papers on it. While it's not being used to diagnose at this time, they did identify and confirm the gene for hEDS. I, too, have been living with hEDS for 40+ years but only 2 years ago was diagnosed formally by a geneticist. Treatment varies and PT varies. Since diagnosis, my heart is monitored annually along with bone density and other specialities. My Dr does take notice of this diagnosis and it does make a difference when I go into surgeries and can give them a tangible reason why I hypermetabolize the anesthetics and require more, regardless of my low weight. I've been taken more seriously since having the diagnosis and I'm monitored closer due to it. I don't remember all of what I included in my original comment because it's been awhile and I'm really busy during finals week, but hopefully this covers what I said with back up of where I got my information. Cortney Gensemer also has an IG page where she updates about the research and advocates for and educates about EDS and its comorbidities. She is the one who leads the team who found the hEDS gene. The Norris lab has some articles detailing it back in 2021 and a newer one at the beginning of 2022, but I haven't read any of their latest in about 8 months. I know many more who the diagnosis has helped them. I know it's not the same everywhere but having a diagnosis and having preventative care, especially for the cardiovascular symptoms, can be very valuable.
Your story resonates with my experience quite strongly. Lots of early childhood trauma, hypermobile joints, and overly flexible personality. But now that I'm 68 years old and going through new types of traumatic experiences, my body is locking up. I have a tremendous amount of joint pain, am no longer flexible and can barely move. Asking my body why, the answer is it's afraid.
Barbara - thank you so much for sharing this. Naming fear is a powerful (brave) thing to do. It's so easy to resist fear and pretend we're ok. I'm curious if, in naming the fear, you noticed anything shift?
@@ElishaCeleste after naming fear, my body gave me more information. about its' fears. Fear of moving into new places. Again. By the end of September I'll be moving into temporary housing that hasn't been found yet, and the into a crumby new apartment for a few months, and then... will I need and assisted living arrangement??? Fear of moving forward in life because of aging and other issues. And, I think the stiffness may be my body's effort to "hold it all together" I'm a person who tends to plunge into things impulsively. Now my body has made me unable to move too fast, not only physically but mentally.
I have genetic hypermobility. Stability and strength are key. I work out with a trainer- gently. I do fascia release daily. Egoscue programs for alignment so the muscles, ligaments and tendons don’t have to work so hard. It works well together.
Hypermobiltlity is only one symptom of Ehlers Danlos... there are different types of the condition. And it is a medical condition that many people suffer from. Some suffer severely and others mildly depending on the type of EDS they have and the severity of their condition. Being hypermobile does not mean you have EDS. In my professional experience it is not easy to get a diagnosis of Ehlers Danlos, it usually requires genetic testing along with checking a lot of other boxes. And one of their biggest problems, or risks, to doing anything is that their tissue doesn't respond or heal "normally".
Thanks SO MUCH for speaking about EDS, and also about hypermobility. I absolutely understand and respect the not wanting of diagnoses, labels, and subsequent boxes and limitations. Personally, I have found diagnoses to be life-changingly helpful. Making sense of seemingly disparate symptoms and the ability to then figure out specifics of wtf is going on, when doctors just vaguely shrug on the way to their next patient. Fascia has been calling me, and youtube brought me to you here and I am fixing to dive deep with this. Thank you for doing what you have done and continue to do.
Thank you so much for the video, I find you amazing. My hypermobility has caused alot of pain, physically and mentally. Trying to find someone to help locally is near to impossible. I have been looking into prolotherapy. It is a very holistic approach to tightening up loose ligaments. It is not a magic bullet as it takes time. My fear and anxiety has taken a toll. Thank you for continuing to educate people.
Trying to find help for Eds pain and tightness around my diaphragm and so glad I stumbled upon your vids. It’s 2am and your exercise are actually helping! X
You won me over instantly when you said you don’t believe in diagnoses!! I just found your channel and am loving diving in to all the info! Wish I lived closer to your practice!! I’ve been dealing with chronic pain and imbalances, weakness for years even though I am considered athletic for my age since I play tennis in my 50’s and have had trouble keeping boundaries since I was a child. Sooo many things I’m resonating with! Exactly what I’ve been looking for for years!! Thank you ✨
I really relate to your comments about your body and EDS. I do feel sensitive in lots of ways that I feel is tied to my connective tissue. I have POTS that I think relates to the nervous system implications of my connective tissue. For me, it has been very helpful to have the hEDS diagonsis mostly to learn from other patients about how to manage my conditions, but also I unexpectedly needed 4 surgeries in the last 5 years and the surgeons and anesthesiologists were very interested in my hEDS diagnosis and made adjustments for it during surgery and recovery that I think aided with my skin healing better in particular.
The comment about hyper mobility perhaps having more elastin than collagen was helpful to me. Have mild hyper mobility , had many injuries,difficulty in sustaining /progressing healing , body feels constantly on guard in several areas. Trying to push pass vulnerabilities to gain mobility
Wow, you just described me to a T. Recently diagnosed with hEds, I have lots of muscle mass and have been doing trauma work and fascia release through cupping and bodywork. It has been helping tremendously
I just read that hypermobility may be impacted by MTHFR mutations. I already eat a lot of high folate foods, but am trying a moderate supplement of methylatedfolate while recovering from a neuromuscular injury to one of my rotator cuff muscles. (I’m heterozygous for the mutation). Collagen supplements never made sense to me since it’s a genetic issue with my collagen. (Recently read that they thing it is produced but not transported to the dell surface) My symptoms have been problematic since I was 10 (around the time puberty began increasing my estrogen), before I had any trauma and I was definitely not a flexible personality! I am bad about ignoring my body and I have read studies that people with hEDS have poor proprioception. That definitely explains a lot for me. I’m really interested in fascia health! And I’ve really benefitted from cupping as I recover. And I really enjoy learning as the science evolves, but also can’t hear enough about listening and studying my own body.
Hi Elisha I just found you this morning and wow!!! I am Hypermobile and I agree with what you said about figuring out what the external wants me to be and then creating myself in that way.
Thanks Elisha for your video. I really loved how you described a personality of someone with HEDS which I was finally diagnosed with. I know many people with the same thing and we have similar ways of how we view the world and how we feel in it. Your information has been so helpful for my healing in a few ways and I think you are a wonderful communicator who cares for others.
According to my physical therapist my wrist joint is very hypermobile. In my case it's now the radial capitate joint, since I had the proximal row of bones in my wrists chiseled out back in 2019. I've tried numerous wrist wraps but none help with my pain. It's a horrible mix of throbbing, burning, stabbing, and aching pain on the top of my hands, fingers, wrists, and forearms. And as of the last few months, the outside of the left elbow is in horrible pain. I've tried a number of different things, nothing helps the pain. Do you think facial release could be helpful? Graston scraping does not help, neither does electric stim. There has to be a way I can stabilize and strengthen my wrist joints.
My belief is that all pain has a cause and can be reversed. Our experience of pain is 100% subjective, and indicates that somewhere inside we feel threatened. Sometimes the threat is a legitimate physical threat - like joint or spinal instability. Sometimes it's more emotional/psychological. Maybe we feel threatened financially or socially. We can feel pain in the body either way. I definitely think it's worth trying my method of fascia release. Personally I don't like graston because it's only going to address superficial fascia and if the therapist is too aggressive it can cause bruising, inflammation and scar tissue. I have videos for the forearms, biceps, triceps and brachialis that can help with the type of pain you're describing.
This sounds similar to the pain that I experience from oxalate toxicity. They’re like tiny shards of crystal lodged in the tissue and joints. The work of Sally K Norton has been an immense help.
Okay thanks. I'll do some searching and try and find those videos. It's interesting too that the physiatrist I've been seeing has basically said there is no point in trying to figure out what is causing my pain anymore. Nerve conduction studies have all come back clean, and the Lyrica he prescribed me is not helping in any way. He's basically said now there is nothing else to try except for heavy duty pain meds and retiring from being a mechanic and just managing the pain with drugs. I cannot afford to stop being a mechanic so I've got to keep trying to find ways to reduce the pain that are not quiting my job or going on addictive pain meds.
@@taragoodnews3206 - thanks for sharing! Toxicity of all kinds affect fascia because of its relationship to the lymph system. I've heard of oxalate poisoning but haven't learned a lot about its relationship to connective tissue and pain. Thanks for mentioning Sally K Norton - I love learning 😊 And I'm glad to hear it helped you!
This was a fantastic video, thank you! I've just joined the Norris Lab genetic study where they are in peer review for the first hypermobility EDS marker. We definitely have two main genetic pools in my family. Ectomorphs with high arches and less flexibility. Then the ones like me with who have a bit more muscle mass but very flat feet and loose joints all over. I also had three spinal injuries as a kid, the most significant being when a sail boat mast fell on my head at 6 years old, fracturing and twisting my 3rd cervical vertebra and over compressing all my disks below. I have had 16 surgeries to my scull and spine since 2012, 4 of which have been in the last year. I have been very self aware of the importance of fascial hydration and shear mobility since 2016 but have never been able to connect the dots they way you do. Not sure where you are located but would love to work with you if you have the time. I currently live in Fort Myers, FL and I am undergoing prolotherapy at Caring Medical. My ligaments and joints are tightening but I am struggling with reestablishment of nerve connection and all of the different proprioceptions. Biggest problem is the twist and instability above C3 which irritates the Vagus nerves which of course irritates everything! Love your channel, thank you again!!
Fascial adhesions (not lesions) are knots or balls that form when fascial sheaths lose their water content, become gluey and stick together. Some people call them muscle knots, but it's really the fascia that creates the ball or area of density. Fascia wraps every muscle fiber and fiber, muscle bundle and muscle group and wherever the fascia goes the muscle fibers go too. Hope that helps explain 😊
Do you believe it's possible to heal hypermobility visa trauma release? Thank you for your video, it's given me a new metaphysical perspective to look at this. ❤
Ooo this describes me to a T! Childhood trauma. Lots of fear then and now. My massage therapist worked on my psoas and my hips and now I can walk without pain!!!
Those are not all examples of myofacial release though. It’s when the therapist stretches the skin on top, stretching the fascia underneath. And they often hold it there. What is the name of what you do in order to find someone in my area?
You're correct - myofascial release, or MFR, as developed and taught by John F Barnes, is what you describe. There are other ways of working with fascia, and I do not practice MFR. I use primarily compression and shearing of the deep fascia. Through compression and shearing we are able to target the skin, superficial fascia/lymph for flushing/stretching, while targeting the deep fascia in the musculature, which is where the adhesions live. Adhesions do not form in the liquid superficial fascia layer just under the skin. Compression and shearing aims to compress and adhesion between a tool and the bone underneath it, using movement to create a "shear" effect, where the tool and the bone move in opposite directions from the fascia/tissues, thereby releasing the fascial fibers that are glued together in the adhesion or knot.
I had never heard of EDS. But I am very hyper mobile. Now at 52 I have realised that still doing the splits as my party trick etc isn’t great for me. I have backed off flexibility and started more control and strength. Family history of multiple joint replacements. My mum has alone has had 2 shoulders, one hip and one knee and a titanium spider implanted in Ins foot. My kids are 24 boy and 22 girl. His knees dislocate regularly. She has had stabilisation surgery after dislocating both shoulder both ways. She will have a masters of Physio at the end of this year. Both were in the Australian Judo team competing internationally and have had to give up. I have some reading up to do. Thank you so much.
You're welcome, I'm glad you're connecting some dots for yourself and your family. And for what it's worth, I do believe there's a lot we can do to build strength and stability in the body, both physically and by doing other emotional/energetic work as necessary (which is always personal to each of us).
I find I'm clumsy and I've been getting 'clumsier' as I get older. I'm 50 now and things are changing big time. I was diagnosed with a mild grade 1 bladder/vaginal wall prolapse, and most recent my throat feels like I have pills stuck in there
EDS is a genetic condition that affects collagen. It affects everything that has collagen- organs, skin, fascia, muscles, blood vessels, brain, eyes, teeth, everything. Whether the effect is perceived by an individual with EDS, and to what degree varies based on that individual and the type of EDS. A diagnosis can save the life of someone with it, depending on how severely affected they are, and the type they have, because some types are life threatening. Even the hypermobility type can be dangerous and severely life limiting. I have that type and many of my organs, my eyes, teeth, and skin are affected as well. Getting a diagnosis was important for me, and essential information for surgeries that followed it as EDS affects healing.
Hi Heather - I haven't read her book yet, but I know Kimberly. She lives near me and I met her a few years ago. I love her work. That info about elastin vs collagen types of people/personalities is fascinating! I thought about including that in this video, but there's only so much I can cover at one time. I don't believe hyper mobility can CAUSE trauma, no. I believe it's the other way around for some of us - chronically needing to people please and pretzel ourselves into behaviors that aren't really our authentic self just to survive can cause our bodies to adopt overly flexible connective tissue. Fascia responds to nervous system cues in all kinds of fascinating ways, and literally mirrors what we believe about ourselves and our place in the world. Unraveling those beliefs, noticing our patterns and choosing differently as adults, we can reverse those cues and the body can change. I've seen my body do some REALLY wild things in response to healing various parts of my psyche and letting go of the past. AND, for what it's worth, I do believe we're all born with certain physical and psychological predispositions. Call it karma or whatever you want, we are born with unique traits that impact how we react/respond to life's events.
The captions say "Vietnamese (auto-generated)". Is it possible for you to change them into English in your settings? I'm very anxious to hear about this topic. Thank you so much.
I have no idea why it was on Vietnamese! Thanks for pointing that out. Unfortunately, I can't figure out how to get English CC/subtitles to show up now. I'll let you know if we figure that out. Usually they are auto-generated in English.
I wonder if the truth might be, as often is, in the middle. Perhaps the genetic view and the environmental view aren't mutually exclusive. I definitely have had to fit around my family and "society" (for lack of a better word) and I've been told by more than one physio that I was hypermobile when they gave me exercises and saw me performing them to their extreme without really meaning to. An interesting anecdote on the "Is it genetic or learned?" question: even as a small child I used to cross my left leg over the other and as I told you before that's where my weak GM is. I have learned not to do this at all and even not to sleep with that leg bent but the other day I saw my toddler doing just that! The interesting though that crossed my mind was that my midwife told me that he was laying like a little banana on my left side - where the weak core muscles are - while in my belly. So perhaps even being in a certain way in your mother's womb due to her muscle imbalances might make you assume a certain posture, who knows! That said, I do think I'm getting a lot of benefit from all the exercises and techniques from the course even though I can't do them as often as I'd like at the moment, so I can only imagine where I'd be if I could commit more hours a day! What I take from this experience is that whether my problems are genetic (my mother was also told she's hypermobile and she's definitely not fit around anyone in life) or influenced by the environment and my experiences trying something to better my lot is just the most sensible approach. Trying something new out has definitely served me well but I also don't want to invalidate anyone else's approach.
The truth is always in the middle (I think!) Everything you shared here are things I think a lot about: are things like flat feet genetic, or did children learn to walk by watching their parents who had flat feet? Epigenetics doesn't mean there isn't a genetic component - it's the environment that terns ON or OFF certain genes. So it's always both 😊
As someone who is officially diagnosed with EDS by a geneticist, I would like to (respectfully) correct some of your misconceptions on it. It sounds like you are describing HSD, hypermobility spectrum disorder. EDS is a genetic condition that is diagnosed based on bloodwork and specific gene mutations (yes, even the hypermobile type has a gene now - newly discovered in June of 2021 by the Norris Lab). EDS is a multisystemic connective tissue disorder, meaning it can affect many areas and systems within the body. Depending on which type of EDS/gene mutation you have, your symptoms will show up in other areas. Certain subtypes of EDS (there are 13 + a couple of extremely rare types) don’t even present with hypermobility. Hypermobility is not that uncommon. When it is present in multiple certain joints of the body, along with multiple other comorbidities, then it is looked into more deeply. The range of issues that come with EDS are extensive. A lot of people (including myself in the past) are bedbound. They can’t move without dislocating joints. There are other issues that include the autonomic nervous system, the digestive system, the brain, and many other areas. The pain and ailments that are experienced each day are not normal compared to those who are just hypermobile. While it is true that hypermobility causes damage to the joints eventually, it’s the presence of subluxing or dislocating joints constantly that increases the joint pain and damage in those with EDS.
Another note I wanted to touch on is your comment about seeking a diagnosis and it being just a name for a bunch of symptoms. EDS is genetic and diagnosed based on specific gene mutations. I was not seeking a diagnosis. It was during a visit when my orthopedist referred me to a geneticist because he was familiar with the syndrome. He could not diagnose it himself but had to send me to a geneticist. At the geneticist, I was given echocardiograms and bone density scans and PT. EDS is known to affect the heart, even in subtypes other than the vascular type. EDS can take someone’s life by prolapsing organs and rupturing aortas or other heart defects. It’s important to monitor these in one with EDS. Furthermore, PT (when done by someone who is knowledgeable) can help increase the quality of life in one with such extreme chronic pain. Our muscles are tight when our joints are so loose but we need to learn how to strengthen the correct muscles to also help our joints stay in place.
I’m sure there’s more to add because EDS is so complex, but I’ll leave it here. While I’m sure your intentions were honest and purely motivated, they could hurt someone who actually struggles with EDS.
For more information, Disjointed is a wonderful book for those who suffer with EDS. Also, Understanding Hypermobile Ehlers-Danlos Syndrome by Claire Smith is a wonderful book for recognizing the multiple ways EDS affects those who suffer from it.
I hope this came off as respectful as that is what I intended.
The hypermobility ehlers danlos still does not have a gene on the genetic testing.
@@Piecesoftheshadow the Norris lab found at least one gene and is continuing to do testing on it/them. Not everyone is using the gene as of yet, but they did find it.
Not only the genetic test for hypermobile EDS is not available yet but EDS can be diagnosed by different specialists, not only a geneticist.
For someone with hypermobile EDS that I've been struggling with for nearly 40 years "just hypermobile" is not normal & can & does cause dislocations & chronic pain that is debilitating (often diagnosed as fibromyalgia) it is not diagnosed with a blood test that other EDS forms are which all have very specific differences. Being "diagnosed" which hypermobile disorder i have has not help me receive better/different treatment options at all. If anything it gives you a label so doctors don't dismiss you like you're neurotic but it isn't helpful. If it was vascular EDS etc it's a different story.
@@beebee1676 About 20% of people have hypermobility with no pain or other symptoms. This is just hypermobility that is benign. Then there's hypermobility that causes pain but doesn't cause systemic issues - just the joint issues. This is HSD aka hypermobile spectrum disorder. Then there's the genetic one - hEDS, which is what I have. In June of 2021, they found at least one gene that may be the cause of hEDS and continued with studies for over 6 months. This gene was found by the Norris lab led by hEDS patient and lab researcher, Cortney Gensemer. I read and kept up with this research for over a year and wrote papers on it. While it's not being used to diagnose at this time, they did identify and confirm the gene for hEDS. I, too, have been living with hEDS for 40+ years but only 2 years ago was diagnosed formally by a geneticist. Treatment varies and PT varies. Since diagnosis, my heart is monitored annually along with bone density and other specialities. My Dr does take notice of this diagnosis and it does make a difference when I go into surgeries and can give them a tangible reason why I hypermetabolize the anesthetics and require more, regardless of my low weight. I've been taken more seriously since having the diagnosis and I'm monitored closer due to it. I don't remember all of what I included in my original comment because it's been awhile and I'm really busy during finals week, but hopefully this covers what I said with back up of where I got my information. Cortney Gensemer also has an IG page where she updates about the research and advocates for and educates about EDS and its comorbidities. She is the one who leads the team who found the hEDS gene. The Norris lab has some articles detailing it back in 2021 and a newer one at the beginning of 2022, but I haven't read any of their latest in about 8 months. I know many more who the diagnosis has helped them. I know it's not the same everywhere but having a diagnosis and having preventative care, especially for the cardiovascular symptoms, can be very valuable.
Your story resonates with my experience quite strongly. Lots of early childhood trauma, hypermobile joints, and overly flexible personality. But now that I'm 68 years old and going through new types of traumatic experiences, my body is locking up. I have a tremendous amount of joint pain, am no longer flexible and can barely move. Asking my body why, the answer is it's afraid.
Barbara - thank you so much for sharing this. Naming fear is a powerful (brave) thing to do. It's so easy to resist fear and pretend we're ok. I'm curious if, in naming the fear, you noticed anything shift?
@@ElishaCeleste after naming fear, my body gave me more information. about its' fears. Fear of moving into new places. Again. By the end of September I'll be moving into temporary housing that hasn't been found yet, and the into a crumby new apartment for a few months, and then... will I need and assisted living arrangement??? Fear of moving forward in life because of aging and other issues. And, I think the stiffness may be my body's effort to "hold it all together" I'm a person who tends to plunge into things impulsively. Now my body has made me unable to move too fast, not only physically but mentally.
@@JoyJonashow are you doing now? Are you done holding onto fear?
@@ACollectionOfBookmarks thank you. Releasing fear is an ongoing process.
I have genetic hypermobility. Stability and strength are key. I work out with a trainer- gently. I do fascia release daily. Egoscue programs for alignment so the muscles, ligaments and tendons don’t have to work so hard. It works well together.
Thank you for sharing what works for you 😊
Gosh i feel this so deeply! The body hypermobility and mental bending over backwards to keep everyone else happy
Hypermobiltlity is only one symptom of Ehlers Danlos... there are different types of the condition. And it is a medical condition that many people suffer from. Some suffer severely and others mildly depending on the type of EDS they have and the severity of their condition. Being hypermobile does not mean you have EDS. In my professional experience it is not easy to get a diagnosis of Ehlers Danlos, it usually requires genetic testing along with checking a lot of other boxes. And one of their biggest problems, or risks, to doing anything is that their tissue doesn't respond or heal "normally".
Thanks SO MUCH for speaking about EDS, and also about hypermobility. I absolutely understand and respect the not wanting of diagnoses, labels, and subsequent boxes and limitations.
Personally, I have found diagnoses to be life-changingly helpful. Making sense of seemingly disparate symptoms and the ability to then figure out specifics of wtf is going on, when doctors just vaguely shrug on the way to their next patient.
Fascia has been calling me, and youtube brought me to you here and I am fixing to dive deep with this.
Thank you for doing what you have done and continue to do.
Thank you so much for the video, I find you amazing. My hypermobility has caused alot of pain, physically and mentally. Trying to find someone to help locally is near to impossible. I have been looking into prolotherapy. It is a very holistic approach to tightening up loose ligaments. It is not a magic bullet as it takes time. My fear and anxiety has taken a toll. Thank you for continuing to educate people.
Trying to find help for Eds pain and tightness around my diaphragm and so glad I stumbled upon your vids. It’s 2am and your exercise are actually helping! X
You won me over instantly when you said you don’t believe in diagnoses!!
I just found your channel and am loving diving in to all the info!
Wish I lived closer to your practice!! I’ve been dealing with chronic pain and imbalances, weakness for years even though I am considered athletic for my age since I play tennis in my 50’s and have had trouble keeping boundaries since I was a child. Sooo many things I’m resonating with!
Exactly what I’ve been looking for for years!!
Thank you ✨
I really relate to your comments about your body and EDS. I do feel sensitive in lots of ways that I feel is tied to my connective tissue. I have POTS that I think relates to the nervous system implications of my connective tissue. For me, it has been very helpful to have the hEDS diagonsis mostly to learn from other patients about how to manage my conditions, but also I unexpectedly needed 4 surgeries in the last 5 years and the surgeons and anesthesiologists were very interested in my hEDS diagnosis and made adjustments for it during surgery and recovery that I think aided with my skin healing better in particular.
The comment about hyper mobility perhaps having more elastin than collagen was helpful to me. Have mild hyper mobility , had many injuries,difficulty in sustaining /progressing healing , body feels constantly on guard in several areas. Trying to push pass vulnerabilities to gain mobility
Pairing the body with physical attributes , very interesting 🌸
Wow, you just described me to a T. Recently diagnosed with hEds, I have lots of muscle mass and have been doing trauma work and fascia release through cupping and bodywork. It has been helping tremendously
I just read that hypermobility may be impacted by MTHFR mutations. I already eat a lot of high folate foods, but am trying a moderate supplement of methylatedfolate while recovering from a neuromuscular injury to one of my rotator cuff muscles. (I’m heterozygous for the mutation).
Collagen supplements never made sense to me since it’s a genetic issue with my collagen. (Recently read that they thing it is produced but not transported to the dell surface)
My symptoms have been problematic since I was 10 (around the time puberty began increasing my estrogen), before I had any trauma and I was definitely not a flexible personality! I am bad about ignoring my body and I have read studies that people with hEDS have poor proprioception. That definitely explains a lot for me.
I’m really interested in fascia health! And I’ve really benefitted from cupping as I recover. And I really enjoy learning as the science evolves, but also can’t hear enough about listening and studying my own body.
Hi Elisha I just found you this morning and wow!!! I am Hypermobile and I agree with what you said about figuring out what the external wants me to be and then creating myself in that way.
Thanks Elisha for your video. I really loved how you described a personality of someone with HEDS which I was finally diagnosed with. I know many people with the same thing and we have similar ways of how we view the world and how we feel in it. Your information has been so helpful for my healing in a few ways and I think you are a wonderful communicator who cares for others.
Interesting!!!
According to my physical therapist my wrist joint is very hypermobile. In my case it's now the radial capitate joint, since I had the proximal row of bones in my wrists chiseled out back in 2019. I've tried numerous wrist wraps but none help with my pain. It's a horrible mix of throbbing, burning, stabbing, and aching pain on the top of my hands, fingers, wrists, and forearms. And as of the last few months, the outside of the left elbow is in horrible pain. I've tried a number of different things, nothing helps the pain. Do you think facial release could be helpful? Graston scraping does not help, neither does electric stim. There has to be a way I can stabilize and strengthen my wrist joints.
My belief is that all pain has a cause and can be reversed. Our experience of pain is 100% subjective, and indicates that somewhere inside we feel threatened. Sometimes the threat is a legitimate physical threat - like joint or spinal instability. Sometimes it's more emotional/psychological. Maybe we feel threatened financially or socially. We can feel pain in the body either way. I definitely think it's worth trying my method of fascia release. Personally I don't like graston because it's only going to address superficial fascia and if the therapist is too aggressive it can cause bruising, inflammation and scar tissue. I have videos for the forearms, biceps, triceps and brachialis that can help with the type of pain you're describing.
This sounds similar to the pain that I experience from oxalate toxicity. They’re like tiny shards of crystal lodged in the tissue and joints. The work of Sally K Norton has been an immense help.
Okay thanks. I'll do some searching and try and find those videos. It's interesting too that the physiatrist I've been seeing has basically said there is no point in trying to figure out what is causing my pain anymore. Nerve conduction studies have all come back clean, and the Lyrica he prescribed me is not helping in any way. He's basically said now there is nothing else to try except for heavy duty pain meds and retiring from being a mechanic and just managing the pain with drugs. I cannot afford to stop being a mechanic so I've got to keep trying to find ways to reduce the pain that are not quiting my job or going on addictive pain meds.
@@taragoodnews3206 - thanks for sharing! Toxicity of all kinds affect fascia because of its relationship to the lymph system. I've heard of oxalate poisoning but haven't learned a lot about its relationship to connective tissue and pain. Thanks for mentioning Sally K Norton - I love learning 😊 And I'm glad to hear it helped you!
@@taragoodnews3206 Thanks for sharing that. I'll have to do some research into oxalate toxicity and Sally Norton!
Another great video. Good job 👏
Thank you for watching 😊
This was a fantastic video, thank you! I've just joined the Norris Lab genetic study where they are in peer review for the first hypermobility EDS marker. We definitely have two main genetic pools in my family. Ectomorphs with high arches and less flexibility. Then the ones like me with who have a bit more muscle mass but very flat feet and loose joints all over. I also had three spinal injuries as a kid, the most significant being when a sail boat mast fell on my head at 6 years old, fracturing and twisting my 3rd cervical vertebra and over compressing all my disks below. I have had 16 surgeries to my scull and spine since 2012, 4 of which have been in the last year. I have been very self aware of the importance of fascial hydration and shear mobility since 2016 but have never been able to connect the dots they way you do. Not sure where you are located but would love to work with you if you have the time. I currently live in Fort Myers, FL and I am undergoing prolotherapy at Caring Medical. My ligaments and joints are tightening but I am struggling with reestablishment of nerve connection and all of the different proprioceptions. Biggest problem is the twist and instability above C3 which irritates the Vagus nerves which of course irritates everything! Love your channel, thank you again!!
Awesome explanation, thank you 🙏
Facial lesions in the muscle belly? Please explain, thanks
Fascial adhesions (not lesions) are knots or balls that form when fascial sheaths lose their water content, become gluey and stick together. Some people call them muscle knots, but it's really the fascia that creates the ball or area of density. Fascia wraps every muscle fiber and fiber, muscle bundle and muscle group and wherever the fascia goes the muscle fibers go too. Hope that helps explain 😊
@@ElishaCeleste thanks for explaining.
Do you believe it's possible to heal hypermobility visa trauma release? Thank you for your video, it's given me a new metaphysical perspective to look at this. ❤
Ooo this describes me to a T! Childhood trauma. Lots of fear then and now. My massage therapist worked on my psoas and my hips and now I can walk without pain!!!
Yay, so glad you found someone who is helping you!
EDS is a connective tissue disorder that is caused by defective collagen.
That's my understanding.
Those are not all examples of myofacial release though. It’s when the therapist stretches the skin on top, stretching the fascia underneath. And they often hold it there. What is the name of what you do in order to find someone in my area?
You're correct - myofascial release, or MFR, as developed and taught by John F Barnes, is what you describe. There are other ways of working with fascia, and I do not practice MFR. I use primarily compression and shearing of the deep fascia. Through compression and shearing we are able to target the skin, superficial fascia/lymph for flushing/stretching, while targeting the deep fascia in the musculature, which is where the adhesions live. Adhesions do not form in the liquid superficial fascia layer just under the skin. Compression and shearing aims to compress and adhesion between a tool and the bone underneath it, using movement to create a "shear" effect, where the tool and the bone move in opposite directions from the fascia/tissues, thereby releasing the fascial fibers that are glued together in the adhesion or knot.
@@ElishaCeleste Thank you for this information. Very helpful.
I had never heard of EDS. But I am very hyper mobile. Now at 52 I have realised that still doing the splits as my party trick etc isn’t great for me. I have backed off flexibility and started more control and strength.
Family history of multiple joint replacements. My mum has alone has had 2 shoulders, one hip and one knee and a titanium spider implanted in Ins foot.
My kids are 24 boy and 22 girl. His knees dislocate regularly. She has had stabilisation surgery after dislocating both shoulder both ways. She will have a masters of Physio at the end of this year. Both were in the Australian Judo team competing internationally and have had to give up.
I have some reading up to do. Thank you so much.
You're welcome, I'm glad you're connecting some dots for yourself and your family. And for what it's worth, I do believe there's a lot we can do to build strength and stability in the body, both physically and by doing other emotional/energetic work as necessary (which is always personal to each of us).
I find I'm clumsy and I've been getting 'clumsier' as I get older. I'm 50 now and things are changing big time. I was diagnosed with a mild grade 1 bladder/vaginal wall prolapse, and most recent my throat feels like I have pills stuck in there
EDS is a genetic condition that affects collagen. It affects everything that has collagen- organs, skin, fascia, muscles, blood vessels, brain, eyes, teeth, everything. Whether the effect is perceived by an individual with EDS, and to what degree varies based on that individual and the type of EDS. A diagnosis can save the life of someone with it, depending on how severely affected they are, and the type they have, because some types are life threatening. Even the hypermobility type can be dangerous and severely life limiting. I have that type and many of my organs, my eyes, teeth, and skin are affected as well. Getting a diagnosis was important for me, and essential information for surgeries that followed it as EDS affects healing.
Love your voice and expression, Elisha!
Hi Heather - I haven't read her book yet, but I know Kimberly. She lives near me and I met her a few years ago. I love her work. That info about elastin vs collagen types of people/personalities is fascinating! I thought about including that in this video, but there's only so much I can cover at one time. I don't believe hyper mobility can CAUSE trauma, no. I believe it's the other way around for some of us - chronically needing to people please and pretzel ourselves into behaviors that aren't really our authentic self just to survive can cause our bodies to adopt overly flexible connective tissue.
Fascia responds to nervous system cues in all kinds of fascinating ways, and literally mirrors what we believe about ourselves and our place in the world. Unraveling those beliefs, noticing our patterns and choosing differently as adults, we can reverse those cues and the body can change. I've seen my body do some REALLY wild things in response to healing various parts of my psyche and letting go of the past.
AND, for what it's worth, I do believe we're all born with certain physical and psychological predispositions. Call it karma or whatever you want, we are born with unique traits that impact how we react/respond to life's events.
The captions say "Vietnamese (auto-generated)". Is it possible for you to change them into English in your settings? I'm very anxious to hear about this topic. Thank you so much.
I have no idea why it was on Vietnamese! Thanks for pointing that out. Unfortunately, I can't figure out how to get English CC/subtitles to show up now. I'll let you know if we figure that out. Usually they are auto-generated in English.
Learning a lot from your video and the comments here. Thanks!
I wonder if the truth might be, as often is, in the middle.
Perhaps the genetic view and the environmental view aren't mutually exclusive. I definitely have had to fit around my family and "society" (for lack of a better word) and I've been told by more than one physio that I was hypermobile when they gave me exercises and saw me performing them to their extreme without really meaning to.
An interesting anecdote on the "Is it genetic or learned?" question: even as a small child I used to cross my left leg over the other and as I told you before that's where my weak GM is. I have learned not to do this at all and even not to sleep with that leg bent but the other day I saw my toddler doing just that! The interesting though that crossed my mind was that my midwife told me that he was laying like a little banana on my left side - where the weak core muscles are - while in my belly. So perhaps even being in a certain way in your mother's womb due to her muscle imbalances might make you assume a certain posture, who knows!
That said, I do think I'm getting a lot of benefit from all the exercises and techniques from the course even though I can't do them as often as I'd like at the moment, so I can only imagine where I'd be if I could commit more hours a day! What I take from this experience is that whether my problems are genetic (my mother was also told she's hypermobile and she's definitely not fit around anyone in life) or influenced by the environment and my experiences trying something to better my lot is just the most sensible approach. Trying something new out has definitely served me well but I also don't want to invalidate anyone else's approach.
The truth is always in the middle (I think!) Everything you shared here are things I think a lot about: are things like flat feet genetic, or did children learn to walk by watching their parents who had flat feet? Epigenetics doesn't mean there isn't a genetic component - it's the environment that terns ON or OFF certain genes. So it's always both 😊
Help I hurt all the time😨
Laxity and looseness in the ligaments L🎉
First you need to start your video over. You do not sound helpful at all!! You may confuse people that really deal with HEDS .