Long covid here. Liked the end story about plants. I am a horticulturist, have taught that subject matter at a local 2 year college, was the daughter of an arborist and landscaper, and have run a chain of garden centers here in the Chicagoland area. So when you spoke about the lady growing plants, I was chuckling. I have long seen what plants do to people. I once saw a woman driving down the alleyway to get to the parking area. It was about 4:30 or so when people get off of work but make their little stops before going home. I saw the drab, grey face she wore, and she turned her head to look at the various tables in our yard sparkling with flowers, fruit trees, and vegetables, herbs and fruit plants. Her face changed dramatically, her eyes opened wide and she had a great big smile on her face. She radiated back to the plants, how happy they made her feel. I never forgot that look. And I watch for other looks. Once, I made a table of purely red flowering annuals, to attract the hummingbirds that were starting to make their way back. It was a delight to watch them feed. And it enchanted my customers who promptly bought red flowers. We did the same thing for blue flowers for the pollinators who see in ultraviolet like the bees. It's essential to attract them for better fruiting in your veggies. Better yields. But as I like to say, sometimes the last thing I do is "just make sales". ...I create gardeners, who in turn, cultivate the inner garden. That is how to really create heaven on Earth. Remember, Paradise means the enclosed garden......
I’m so excited about your explanation at 8 minutes in. I think it helps explain the uptick in even the conscious fear I have when POTS is causing my heart rate to spike. It sounds foolish because I’m not normally a super cautious/scared person but, for instance, when in a card store the other day a man walked behind me and I got fearful. It was so strange to me that I mentioned it later to my husband. Of course my POTS was already “going to town” before the completely harmless gentleman walked behind me, down the aisle. I’ve listened to so much about POTS, dysautonomia, etc. but this is the first time I’ve heard this explanation. Often if I just have the reason why something is occurring I can better deal with it. Thank you so much for sharing your knowledge with all of us!!!!!!!!!!!😊❤
I have EDS/POTS too!! This was so cool to hear!! Although I will say, it sounds like this person’s symptoms are pretty low on the EDS spectrum. So for those of us who have more severe symptoms, healing may take longer!
That's a beautiful and encouraging story. I've found out about you Irene yesterday and I'm amazed. In every video there is something important to me. It not only gives me hope that I can heal my trauma, but also motivates me. Few months ago I have this problem with exercising you mentioned - whenever my heartbeat went faster (even doing simple things) I started panicking. I thought I was going crazy - thank you for clarifying that for me.
As I go through the resources and stumble 1 step forward and 1 step back, sometimes I feel somewhat hopeless. It's then, when I'm having a hard time, like I have been today, that I look for videos like this one. They give me hope again. Thank you, Irene. Thank you, Elizabeth.
Ok thats so weird I've been concerned about some of my plants and was looking at yours thinking how being regulated must help a lot with keeping plants alive and well, one way or another. Mine are alive unlike past plants but still not doing the best lol so surprised you brought it up right after I was thinking to myself about it.
Thank you so much for sharing this. I have EDS,POTS,MCAS, Mold toxicity, EBV,and tons of other confections. It causes sooo many issues with my nervous system.My symptoms are more advanced,but know that this can help with time.
I've had many of the same issues, plus Lyme and serious environmental & food allergies. Now I understand that all of my ongoing health issues are a result of trauma and an extremely dysregulated nervous system. I'm on Day 9 of Irene's 21 Day course and starting to feel significantly better. I've been mostly either bed-ridden or house-bound for years...now I have hope again.
Hi Bella Grace, Jen here from Irene's Team. Irene offers an introductory course called the 21 Day Nervous System Tune Up and she also offers a more comprehensive program for learning to work with your nervous system called SmartBody SmartMind. I'll link to both programs here in case you want to learn more. The 21 Day Nervous System Tune Up - 21daytuneup.com SmartBody SmartMind - smartbodysmartmind.com
Grateful you're helping others with EDS/PoTs etc - I am 55 years old now, diagnosed with type 3 EDS (through a geneticist ) and PoTs when I was bedridden in UK at 46... now mobile and married in NM, building a tiny house and creating a food forest ... mainly through energy work... so I'd be interested to see how your plan to see if it will help others... I did have one little niggle though - you said EDS was a 'disease' - I guess the literal translation of that word is correct... but it sort of implies you 'caught it' ;) - whereas EDS is a genetic condition... not something you can 'cure' as it is a genetic marker that creates a more elasticated form of collagen - which in turn has many different outcomes for the body ranging from hypermobility/gastric problems/hernia's/PoTs (the blood vessels themselves can be too slack) and many other symptoms...They have defined 13 types of EDS so far - hypermobility is the only one that doesn't have a genetic test but is diagnosed clinically: I have friends with Vascular EDS type (VEDS), and although she is the most brave/active person I know (she competes in paddleboarding and other things regularly), she is also aware that any day an artery could burst (and regularly do... life expectancy is in your 40's at the most... ) So my question is, would your techniques (that I have yet to look at) benefit someone in that position too? As anything I can share to help, I would be grateful for :) My 'healing' came through meditation, nutrition, mindfulness, and a LOT of 'coincidences' that brought me to where I am now - but I have the inverted comma's around 'healing' as I feel it is more about coping... I still wear a back brace daily, still wear my arthritis gloves to help my hands and the oval 8 rings to support my fingers, regular epsom soaks, good food (followed something called the FODMAP diet in UK with the gastro specialist to work out how to cope with the gastroparesis) and many other techniques I adopted for myself (cushion between legs while sleeping/ taking a deep breath when stressed etc) so I am coping ok atm... but I can't put my finger on what is was that made the switch in my Being... so having something to share to help others would be good. Off out to check the chickens now - and grateful for every breath ;)
Hi Jo, Seth here with Team Lyon. Thanks so much for being here and sharing. Yes, EDS is a genetic condition, thanks for clarifying that! :) It sounds like you have done a LOT of great work to help yourself heal and improve. And, yes, it sounds like you could benefit from trauma physiology fundamentals and nervous system know how as well. For example - taking a deep breath when stressed is actually less effective than taking a quick inhale through the nose and then a looooooong exhale through the mouth. This is because a deep inhale accelerates the heart rate, while a long exhale slows the heart rate. I definitely encourage you to check out Irene's online programs and free resources ! links below. Free Resources - irenelyon.com/free-resources-2/ Drop In Class - irenelyon.com/drop-in-class-1 21 Day Tune Up - 21daytuneup.com/
I don’t know if you’ll ever see this comment but I too have hEDS and as someone who has purchased the 21 day nervous system tuneup and followed her videos I couldn’t believe I had not seen this one on EDS. However, I think Ms. Lyon confused connective tissue diseases with disorders. Connective tissue diseases are systemic inflammation such as RA and I see someone on her team commented about that. What I have, and what you have, is a genetic abnormality and our bodies don’t make enough collagen. However! Nervous system dysregulation can wreak havoc on our bodies, making any chronic issue worse. It can AID our bodies to address these nervous system imbalances and help us to support our bodies as best we can with all they have to deal with living with hEDS. Unfortunately, I wish she would put out a clarifying video educating people on that point. Because it gives false hope about “curing” something that must be managed, supported, and lived with. My father died when I was 19 from a long list of health issues similar to mine and now we understand why. He too had hEDS most likely. It’s so important to redirect the conversation to how to support our hypermobile bodies as that effects the connective tissue both outside and inside. It can’t be cured and I wish she’d clarify that misinformation in another video as people really come to her for advice. Also, it’s in the title of the video. I support you friend. You’ve got this. It’s like being born with one leg much shorter, you can make adjustments to support yourself but you can’t blame it on your nervous system. Support your nervous system, yes, but it won’t fix the collagen issue. That’s nonsense.
@@KALENDROSjust lost my mum to severe ms heds asperger's I have heds ADHD asperger's fybromyalgia did your father have the vascular part anything what helps your pain
Many people, including myself, come to your videos for information. I understand the disclaimer, never let it replace actual medical information from your doctor etc etc. but please put out something clarifying that EDS cannot be cured. I was just recently diagnosed after a lifetime of severe health struggle and nervous system work is so important to support our bodies, but doesn’t offer a cure for lax connective tissue. All the nervous system work in the world cannot fix my loose joints or the fact I have physical abnormalities of my heart due to lax connective tissue. Please, out of respect for the hEDS community, I ask that you make a video on supporting one’s body through nervous system regulation as an AID not a CURE. If you do feel it can be cured, as someone with an MLIS degree, I ask you to please put forth your credible sources of research and study to prove this as it contradicts much of the medical information that I’ve read in PubMed studies.
@@joanneclark8256 I think the nervous system work Irene does is a huge part of supporting our bodies. Ppl with hEDS have a lot of joint problems and pain and supporting the adrenals and helping the body is key. As far as physically I have to do a lot of PT which include strengthening the muscles around the joints. There are a lot of good resources online for hEDS. Hope this helps.
Irene doesn’t claim this is a cure for EDS, this is only one piece of anecdotal evidence that this type of work may help reduce the severity of EDS symptoms like pain.
Hi fran gorycki, Jen here from Team Lyon. The answer to your question can be quite nuanced depending on the person, their history and unique nervous system. To give you a few examples, it might involve growing capacity and working with fear in such a way that the system can metabolize the fear and in doing so, become uncoupled from a rise in heart rate. Sometimes a survival response (such as the flight response) may be to complete which lets the system know that a high in heart rate no long needs to be connected to a threat response. And at times healthy aggression may first need to be expressed and integrated for these things to happen. Hope this helps give you a few ideas.
What about if you have symptoms like as soon as you come out of the womb? I had childhood trauma but my mom noticed symptoms really really early before all that. But I mean if it’s all the nervous system gone awry why was I born with symptoms? I mean I definitely believe the nervous system plays a big part, but it doesn’t seem to be the whole story to me. Is there theories about trauma in the womb or is it due to the mothers dysregulated nervous system somehow and related hormones that are released? I know you can’t say for sure because researches needed, but I’m curious what the ideas are around people with symptoms from birth. I made a lot of progress for awhile with exercise, meditation, diet and etc. but was on IV fluids 5 days a week and that wasn’t sustainable, but I’ve gone downhill since cutting back on them to almost nothing despite getting loads of salt/fluids and being in pt the last 1.5 years straight and lots before that and making other positive changes. Also had chiari and Skull-C2 instability I had to get surgery for. And a bad TBI (skull fracture multiple hematomas) before that. I’m Always trying things so I’ll definitely look into some of the resources. Trying to dig out of my most recent hole. 6 months ago I walked the farthest I had since being sick and now I depend on my wheelchair a ton. But infected central line, hospital stays, sepsis and blood clots weren’t my jam either. Frustrating trying to find a new way to climb out.
Hi Mahala Maire, Jen here from Team Lyon. To your point, there can be different factors that impact our development and health, and from a nervous system perspective early/developmental trauma can start at conception as we are impacted by our mother's biochemistry (stress, substances, etc.). They are also finding that trauma can be passed down in our genetics. So in short, what happens in utero can lead to symptoms starting at or even before birth. Often when early/developmental trauma is in the picture, we have limited access to our physiology. This can involve overusing survival physiology for day-to-day living and underusing what we call the more down regulated physiologies, including those that support social connection. Kathy Kain and Stephen Terrell are two of Irene's teachers and colleagues who specialize in these areas. Irene incorporates aspects of this work into SmartBody SmartMind, her more comprehensive program, and you can also work with a nervous system practitioner who's specially trained in these approaches. I'll link to a few related resources that might be of interest if you'd like to learn more. free Healing Trauma video training - irenelyon.com/healing-trauma Interview with Kathy Kain. - ruclips.net/video/4RLFmlo2vb0/видео.html How to Heal Adrenal Fatigue by working with stress organs - ruclips.net/video/oG3PRNXBD5c/видео.html
Please take care how you discuss a condition like EDS. It is a serious genetic disorder that cannot be cured. You may be able to reduce or manage symptoms, but talking about healing or curing or saying that we "think its about collagen but maybe its not" is extremely disrespectful to those who live with the condition who deal with the constant misinformation effecting how we are treated by both doctors and peers. I am happy this woman was able to reduce and manage her symptoms to such a level, but do not paint a false picture of curing an uncurable illness. My EDS and my trauma are both separate, and interconnected, but healing my trauma or nervous system will not cure my genetic disorder. Just please be careful with your language when discussing topics like this. I have enjoyed your videos up until this point but hearing what you said about EDS has really effected how I feel about your channel
She just shared a story of someone who had EDS and what happened to them. I also deal with these symptoms. Perhaps holding so closely to the idea that it’s incurable is what keeps one from healing from it. I’m also here to say that I’ve been using Irene’s free resources and many issues that I’ve been having with my health is starting to improve noticeably. I think it’s wonderful that this story was shared!
@@LilMsLorelei Improvement and a "cure" is two very, very different things. Understanding the science and reality of my condition does not "hold me back" from improving my symptoms with work. It's simply living in reality. Having chronic GENETIC conditions is a lot of work, and its great when protocols of this or that can make things better, but its constant management and you can't just do it and be better and never worry about it again. Doing things to manage an illness to improve quality of life is not the same as "healing from it" or "curing it". But I'm tired of people confusing improvement, with the fantasy of a cure. I cannot heal my chronic illness like I heal a broken bone. It just doesn't work that way. It minimizes the actual work that needs to be done. Its lifelong, its not always easy, you have to constantly work at it. You have to be prepared for you body to change and for things to not work, and to adapt and keep trying. Healing isn't some magical thing you can pay for. Its hard work that doesn't always work as well as someone tells you its going to so you find what works for you and keep going, keep trying, keep working, keep adapting to what your body needs. So don't tell me I'm holding myself back. I know what it actually takes to manage my health without believing in fantasies. I'm not saying this woman's protocol can't do people some good, I'm just so sick and tired of the language of healing and curing shit that CANNOT BE CURED. Unless there's some gene therapy thing going on no one is mentioning? Be realistic for the love of god. Talk in terms that don't lure people into a fantasy that will just let them down. Stop turning serious things into a mockery of what they are.
@@deannarose2424 it’s so difficult to explain to someone who has normal connective tissue what it’s like living in a body where ligaments and tendons just say ‘nope, can’t do that’. Not because of trauma but because they really can’t do what non EDS ligaments and tendons can do, namely hold joints in place so muscles don’t have to overwork or injuries occur. Unfortunately we can’t magically tighten stretchy ligaments, only try and strengthen muscles around them. However people with normal connective tissue literally can’t imagine what EDS feeds like all day every day because their connective tissue works. I can’t walk because my feet are so bad and connective tissue smashed and joints useless. I can’t meditate my way into making my feet healed, I need bilateral foot and ankle surgery to get me walking. I’ve had my left foot operated on so far so good and my mobility much better already, right foot and ankle scheduled for September. Without surgery I’d be crippled forever. That creates more trauma than my childhood ever did!
@@rachellewis5016 like, working to help your nervous system is completely different than treating a genetic connective tissue disease and I wish she would acknowledge that drastic difference. EDS is what traumatizes the nervous system, its a constant unavoidable source of physical trauma so doing healing work on the nervous system would help the symptoms of its longterm damage, but it would be a constant management not a "do a thing for a few months and healed bam!". Childhood trauma and constant physical trauma from chronic illness is a double whammy of shit on the nervous system but you cannot put EDS in the catagory of things "healed" when working on the nervous system. You can heal some of the damage, and especially help with POTS that would be the most significant help, but i can't meditate and heal my genetic code to start making functional collagen. You have to do a careful constant set of management techniques to deal with symptoms. Physical therapy to recover from and prevent injury. Feldenkrais to work on proprioception and relearning how to move. Canes, walkers, or chairs to prevent falls and provide independence and mobility. Braces and splints or surgery as needed for joints that are the most unstable. A million other little things unique to the person. You have to find a balance of activity and rest. Medications if needed. Treatment for POTS, adrenal fatigue, or any of the hundred comorbidities that tag along with the genetic glitches EDS provides. Working to heal the nervous system would help with a lot of the comorbidities, and with the whiplash of constant injuries, but I just want this condition to be spoken about realistically. It takes a lot of work, and is exhausting, and there is simply no easy solution. Its disrespectful to imply there is. Just present it as another important tool in the toolbox of management. It would be great if you did a video discussing how chronic illness, instead of being caused by childhood trauma, is causing trauma and can cause it from childhood, and can damage the nervous system. Talk about it realistically. Talk about how having a constant practice to care for your nervous system can help with chronic illnesses, NOT CURE THEM, and be honest about it being a constant practice and management as the trauma is ongoing. Talk about where medical/physical trauma and childhood trauma intersect, combine, and are separate, but have the same effect and magnify each other. I'm so tired of chronic illness being talked about like its some silly thing we brought upon ourselves from childhood trauma and through enough meditation and deep breathing we will magically not be chronically ill. There is a way to discuss where these subjects intersect without invalidating the medical realities of genetic, chronic illness. My hip rips out of the socket like a kid pulling the limbs off their barbie doll. I can't meditate that away. My autoimmune disorder destroys the small fibers throughout my body, burning nerves like a fire through my skin, killing the nerves that make my stomach properly digest food and muscles properly function. I have to rely on my medications just as much as I rely on my meditative practice and EMDR in therapy to deal with the trauma its caused. There are often two sides to any healing journey. Please be honest about it.
Hi Erin Wells, Jen here from Team Lyon. Have you seen Irene's free 3-part Healing Trauma video series? If not, that can be a good place to start, by learning more. I'll link to it here in case you want to give it a watch. Healing Trauma - irenelyon.com/healing-trauma
Hi Gabby Smith, Jen here from Team Lyon. As Irene and those of us on Team Lyon are nervous system practitioners and not medical professionals, we can't speak to whether a particular condition or disease is reversible from a medical perspective. What we have seen is that many people have seen a lessening of symptoms - occasionally to the point where they disappear - when they take steps to grow nervous system regulation and capacity. This is by no means a guarantee that this will happen, and in the case of many chronic conditions more is often possible than traditional allopathic medicine suggests. There is also a growing body of research that suggests that trauma can be passed on from our ancestors, so that may be something to consider re things being genetic.
The story only mentions vague relief from pain...eds has wayyy more symptoms. Organ rupture? Stoma bags? 😮😮😮 This is at best, insulting. And all the eds people in the comments being so polite. 😊
Long covid here. Liked the end story about plants. I am a horticulturist, have taught that subject matter at a local 2 year college, was the daughter of an arborist and landscaper, and have run a chain of garden centers here in the Chicagoland area.
So when you spoke about the lady growing plants, I was chuckling. I have long seen what plants do to people.
I once saw a woman driving down the alleyway to get to the parking area. It was about 4:30 or so when people get off of work but make their little stops before going home.
I saw the drab, grey face she wore, and she turned her head to look at the various tables in our yard sparkling with flowers, fruit trees, and vegetables, herbs and fruit plants. Her face changed dramatically, her eyes opened wide and she had a great big smile on her face. She radiated back to the plants, how happy they made her feel.
I never forgot that look. And I watch for other looks.
Once, I made a table of purely red flowering annuals, to attract the hummingbirds that were starting to make their way back. It was a delight to watch them feed. And it enchanted my customers who promptly bought red flowers.
We did the same thing for blue flowers for the pollinators who see in ultraviolet like the bees. It's essential to attract them for better fruiting in your veggies. Better yields.
But as I like to say, sometimes the last thing I do is "just make sales". ...I create gardeners, who in turn, cultivate the inner garden. That is how to really create heaven on Earth. Remember, Paradise means the enclosed garden......
Beautiful
Your explanation at 7:30 explains why fast walking started to make me more exhausted instead of energizing me. Thank you for your work.
Thank you for bringing awareness to EDS!!!
I’m so excited about your explanation at 8 minutes in. I think it helps explain the uptick in even the conscious fear I have when POTS is causing my heart rate to spike. It sounds foolish because I’m not normally a super cautious/scared person but, for instance, when in a card store the other day a man walked behind me and I got fearful. It was so strange to me that I mentioned it later to my husband. Of course my POTS was already “going to town” before the completely harmless gentleman walked behind me, down the aisle. I’ve listened to so much about POTS, dysautonomia, etc. but this is the first time I’ve heard this explanation. Often if I just have the reason why something is occurring I can better deal with it. Thank you so much for sharing your knowledge with all of us!!!!!!!!!!!😊❤
What an incredible story
I have EDS/POTS too!! This was so cool to hear!! Although I will say, it sounds like this person’s symptoms are pretty low on the EDS spectrum. So for those of us who have more severe symptoms, healing may take longer!
Same here
Same here. I'm very hopeful. Walked 7 km today.
@@christibyerly4298 that’s amazing!!!
@@christibyerly4298 hw u got to that point plz explain
Hi! I have EDS and POTS too, recently diagnosed. Have you been managing okay?
That's a beautiful and encouraging story. I've found out about you Irene yesterday and I'm amazed. In every video there is something important to me. It not only gives me hope that I can heal my trauma, but also motivates me. Few months ago I have this problem with exercising you mentioned - whenever my heartbeat went faster (even doing simple things) I started panicking. I thought I was going crazy - thank you for clarifying that for me.
How are you doing now? Did you heal yourself?
It's a long process, but I see results of the work I'm doing.@@tanyawieczorek6603
What a great story! I was teared-up listening to this. Congratulations on such a big healing journey in so little time!
As I go through the resources and stumble 1 step forward and 1 step back, sometimes I feel somewhat hopeless. It's then, when I'm having a hard time, like I have been today, that I look for videos like this one. They give me hope again. Thank you, Irene. Thank you, Elizabeth.
Ok thats so weird I've been concerned about some of my plants and was looking at yours thinking how being regulated must help a lot with keeping plants alive and well, one way or another. Mine are alive unlike past plants but still not doing the best lol so surprised you brought it up right after I was thinking to myself about it.
Thank you so much for sharing this. I have EDS,POTS,MCAS, Mold toxicity, EBV,and tons of other confections. It causes sooo many issues with my nervous system.My symptoms are more advanced,but know that this can help with time.
I have that exact list of health issues and I’m seeing a naturopath. I’m also hopeful that Irenes resources will help me heal fully.
Cant afford a naturopath atm. Glad you are on the right path for healing. That's my intention.
I've had many of the same issues, plus Lyme and serious environmental & food allergies. Now I understand that all of my ongoing health issues are a result of trauma and an extremely dysregulated nervous system. I'm on Day 9 of Irene's 21 Day course and starting to feel significantly better. I've been mostly either bed-ridden or house-bound for years...now I have hope again.
@@mewilcox3653 how are you know? Are you healed?
can one not heal co infections alone or have to have a naturopath? how are you ?
This is me. Ty Irene for your work.
My pain is at a 10. I definitely need this program
Check out the Curable app, it's very good
How are you doing now?
Wow, I’m sooo glad I found your channel & website! This is exactly what I needed for the next step in my healing! 🙏🏻
At minute 8:00 when you talks about why someone with trauma doesn’t exercise it was a real eye opener. Thanks.
Wow! Congrats! That’s exciting! I’d love to know more about your program for the Nervous System !
Hi Bella Grace, Jen here from Irene's Team. Irene offers an introductory course called the 21 Day Nervous System Tune Up and she also offers a more comprehensive program for learning to work with your nervous system called SmartBody SmartMind. I'll link to both programs here in case you want to learn more.
The 21 Day Nervous System Tune Up - 21daytuneup.com
SmartBody SmartMind - smartbodysmartmind.com
Wow, so inspiring! So happy for her healing :D ♡♡
Grateful you're helping others with EDS/PoTs etc - I am 55 years old now, diagnosed with type 3 EDS (through a geneticist ) and PoTs when I was bedridden in UK at 46... now mobile and married in NM, building a tiny house and creating a food forest ... mainly through energy work... so I'd be interested to see how your plan to see if it will help others...
I did have one little niggle though - you said EDS was a 'disease' - I guess the literal translation of that word is correct... but it sort of implies you 'caught it' ;) - whereas EDS is a genetic condition... not something you can 'cure' as it is a genetic marker that creates a more elasticated form of collagen - which in turn has many different outcomes for the body ranging from hypermobility/gastric problems/hernia's/PoTs (the blood vessels themselves can be too slack) and many other symptoms...They have defined 13 types of EDS so far - hypermobility is the only one that doesn't have a genetic test but is diagnosed clinically: I have friends with Vascular EDS type (VEDS), and although she is the most brave/active person I know (she competes in paddleboarding and other things regularly), she is also aware that any day an artery could burst (and regularly do... life expectancy is in your 40's at the most... )
So my question is, would your techniques (that I have yet to look at) benefit someone in that position too? As anything I can share to help, I would be grateful for :)
My 'healing' came through meditation, nutrition, mindfulness, and a LOT of 'coincidences' that brought me to where I am now - but I have the inverted comma's around 'healing' as I feel it is more about coping... I still wear a back brace daily, still wear my arthritis gloves to help my hands and the oval 8 rings to support my fingers, regular epsom soaks, good food (followed something called the FODMAP diet in UK with the gastro specialist to work out how to cope with the gastroparesis) and many other techniques I adopted for myself (cushion between legs while sleeping/ taking a deep breath when stressed etc) so I am coping ok atm... but I can't put my finger on what is was that made the switch in my Being... so having something to share to help others would be good.
Off out to check the chickens now - and grateful for every breath ;)
Hi Jo, Seth here with Team Lyon. Thanks so much for being here and sharing. Yes, EDS is a genetic condition, thanks for clarifying that! :) It sounds like you have done a LOT of great work to help yourself heal and improve. And, yes, it sounds like you could benefit from trauma physiology fundamentals and nervous system know how as well. For example - taking a deep breath when stressed is actually less effective than taking a quick inhale through the nose and then a looooooong exhale through the mouth. This is because a deep inhale accelerates the heart rate, while a long exhale slows the heart rate. I definitely encourage you to check out Irene's online programs and free resources ! links below.
Free Resources - irenelyon.com/free-resources-2/
Drop In Class - irenelyon.com/drop-in-class-1
21 Day Tune Up - 21daytuneup.com/
I don’t know if you’ll ever see this comment but I too have hEDS and as someone who has purchased the 21 day nervous system tuneup and followed her videos I couldn’t believe I had not seen this one on EDS. However, I think Ms. Lyon confused connective tissue diseases with disorders. Connective tissue diseases are systemic inflammation such as RA and I see someone on her team commented about that. What I have, and what you have, is a genetic abnormality and our bodies don’t make enough collagen.
However! Nervous system dysregulation can wreak havoc on our bodies, making any chronic issue worse. It can AID our bodies to address these nervous system imbalances and help us to support our bodies as best we can with all they have to deal with living with hEDS.
Unfortunately, I wish she would put out a clarifying video educating people on that point. Because it gives false hope about “curing” something that must be managed, supported, and lived with.
My father died when I was 19 from a long list of health issues similar to mine and now we understand why. He too had hEDS most likely.
It’s so important to redirect the conversation to how to support our hypermobile bodies as that effects the connective tissue both outside and inside. It can’t be cured and I wish she’d clarify that misinformation in another video as people really come to her for advice. Also, it’s in the title of the video.
I support you friend. You’ve got this. It’s like being born with one leg much shorter, you can make adjustments to support yourself but you can’t blame it on your nervous system. Support your nervous system, yes, but it won’t fix the collagen issue. That’s nonsense.
@@KALENDROSjust lost my mum to severe ms heds asperger's I have heds ADHD asperger's fybromyalgia did your father have the vascular part anything what helps your pain
@@Truerealism747 I'm so very sorry for your loss :( no, hEDS runs in my family. Best to you
Many people, including myself, come to your videos for information. I understand the disclaimer, never let it replace actual medical information from your doctor etc etc. but please put out something clarifying that EDS cannot be cured. I was just recently diagnosed after a lifetime of severe health struggle and nervous system work is so important to support our bodies, but doesn’t offer a cure for lax connective tissue. All the nervous system work in the world cannot fix my loose joints or the fact I have physical abnormalities of my heart due to lax connective tissue.
Please, out of respect for the hEDS community, I ask that you make a video on supporting one’s body through nervous system regulation as an AID not a CURE.
If you do feel it can be cured, as someone with an MLIS degree, I ask you to please put forth your credible sources of research and study to prove this as it contradicts much of the medical information that I’ve read in PubMed studies.
would you share what helps you pls
@@joanneclark8256 I think the nervous system work Irene does is a huge part of supporting our bodies. Ppl with hEDS have a lot of joint problems and pain and supporting the adrenals and helping the body is key. As far as physically I have to do a lot of PT which include strengthening the muscles around the joints. There are a lot of good resources online for hEDS. Hope this helps.
Irene doesn’t claim this is a cure for EDS, this is only one piece of anecdotal evidence that this type of work may help reduce the severity of EDS symptoms like pain.
How does the fear response become uncoupled with the rise in heart rate while working out through this type of work?
Hi fran gorycki, Jen here from Team Lyon. The answer to your question can be quite nuanced depending on the person, their history and unique nervous system.
To give you a few examples, it might involve growing capacity and working with fear in such a way that the system can metabolize the fear and in doing so, become uncoupled from a rise in heart rate. Sometimes a survival response (such as the flight response) may be to complete which lets the system know that a high in heart rate no long needs to be connected to a threat response. And at times healthy aggression may first need to be expressed and integrated for these things to happen. Hope this helps give you a few ideas.
I’d love to walk pain free! TES!
I disassociate when I go to the gym and exert myself
What about if you have symptoms like as soon as you come out of the womb? I had childhood trauma but my mom noticed symptoms really really early before all that. But I mean if it’s all the nervous system gone awry why was I born with symptoms? I mean I definitely believe the nervous system plays a big part, but it doesn’t seem to be the whole story to me. Is there theories about trauma in the womb or is it due to the mothers dysregulated nervous system somehow and related hormones that are released? I know you can’t say for sure because researches needed, but I’m curious what the ideas are around people with symptoms from birth.
I made a lot of progress for awhile with exercise, meditation, diet and etc. but was on IV fluids 5 days a week and that wasn’t sustainable, but I’ve gone downhill since cutting back on them to almost nothing despite getting loads of salt/fluids and being in pt the last 1.5 years straight and lots before that and making other positive changes. Also had chiari and Skull-C2 instability I had to get surgery for. And a bad TBI (skull fracture multiple hematomas) before that. I’m Always trying things so I’ll definitely look into some of the resources. Trying to dig out of my most recent hole. 6 months ago I walked the farthest I had since being sick and now I depend on my wheelchair a ton. But infected central line, hospital stays, sepsis and blood clots weren’t my jam either. Frustrating trying to find a new way to climb out.
Hi Mahala Maire, Jen here from Team Lyon. To your point, there can be different factors that impact our development and health, and from a nervous system perspective early/developmental trauma can start at conception as we are impacted by our mother's biochemistry (stress, substances, etc.). They are also finding that trauma can be passed down in our genetics. So in short, what happens in utero can lead to symptoms starting at or even before birth.
Often when early/developmental trauma is in the picture, we have limited access to our physiology. This can involve overusing survival physiology for day-to-day living and underusing what we call the more down regulated physiologies, including those that support social connection. Kathy Kain and Stephen Terrell are two of Irene's teachers and colleagues who specialize in these areas. Irene incorporates aspects of this work into SmartBody SmartMind, her more comprehensive program, and you can also work with a nervous system practitioner who's specially trained in these approaches. I'll link to a few related resources that might be of interest if you'd like to learn more.
free Healing Trauma video training - irenelyon.com/healing-trauma
Interview with Kathy Kain. - ruclips.net/video/4RLFmlo2vb0/видео.html
How to Heal Adrenal Fatigue by working with stress organs - ruclips.net/video/oG3PRNXBD5c/видео.html
autism?
I 💗 this.
I have EDS. DNRS, mickel therapy and john sarno work and yet im still sick
Ive have had fibromyalgia since i was 22. I am not 38.
Hello,
What are your credentials?
Please take care how you discuss a condition like EDS. It is a serious genetic disorder that cannot be cured. You may be able to reduce or manage symptoms, but talking about healing or curing or saying that we "think its about collagen but maybe its not" is extremely disrespectful to those who live with the condition who deal with the constant misinformation effecting how we are treated by both doctors and peers. I am happy this woman was able to reduce and manage her symptoms to such a level, but do not paint a false picture of curing an uncurable illness. My EDS and my trauma are both separate, and interconnected, but healing my trauma or nervous system will not cure my genetic disorder. Just please be careful with your language when discussing topics like this. I have enjoyed your videos up until this point but hearing what you said about EDS has really effected how I feel about your channel
She just shared a story of someone who had EDS and what happened to them. I also deal with these symptoms. Perhaps holding so closely to the idea that it’s incurable is what keeps one from healing from it. I’m also here to say that I’ve been using Irene’s free resources and many issues that I’ve been having with my health is starting to improve noticeably. I think it’s wonderful that this story was shared!
@@LilMsLorelei Improvement and a "cure" is two very, very different things. Understanding the science and reality of my condition does not "hold me back" from improving my symptoms with work. It's simply living in reality. Having chronic GENETIC conditions is a lot of work, and its great when protocols of this or that can make things better, but its constant management and you can't just do it and be better and never worry about it again. Doing things to manage an illness to improve quality of life is not the same as "healing from it" or "curing it". But I'm tired of people confusing improvement, with the fantasy of a cure. I cannot heal my chronic illness like I heal a broken bone. It just doesn't work that way. It minimizes the actual work that needs to be done. Its lifelong, its not always easy, you have to constantly work at it. You have to be prepared for you body to change and for things to not work, and to adapt and keep trying. Healing isn't some magical thing you can pay for. Its hard work that doesn't always work as well as someone tells you its going to so you find what works for you and keep going, keep trying, keep working, keep adapting to what your body needs. So don't tell me I'm holding myself back. I know what it actually takes to manage my health without believing in fantasies. I'm not saying this woman's protocol can't do people some good, I'm just so sick and tired of the language of healing and curing shit that CANNOT BE CURED. Unless there's some gene therapy thing going on no one is mentioning? Be realistic for the love of god. Talk in terms that don't lure people into a fantasy that will just let them down. Stop turning serious things into a mockery of what they are.
@@deannarose2424 it’s so difficult to explain to someone who has normal connective tissue what it’s like living in a body where ligaments and tendons just say ‘nope, can’t do that’. Not because of trauma but because they really can’t do what non EDS ligaments and tendons can do, namely hold joints in place so muscles don’t have to overwork or injuries occur.
Unfortunately we can’t magically tighten stretchy ligaments, only try and strengthen muscles around them.
However people with normal connective tissue literally can’t imagine what EDS feeds like all day every day because their connective tissue works.
I can’t walk because my feet are so bad and connective tissue smashed and joints useless. I can’t meditate my way into making my feet healed, I need bilateral foot and ankle surgery to get me walking. I’ve had my left foot operated on so far so good and my mobility much better already, right foot and ankle scheduled for September. Without surgery I’d be crippled forever. That creates more trauma than my childhood ever did!
@@rachellewis5016 YES EXACTLY!!!
@@rachellewis5016 like, working to help your nervous system is completely different than treating a genetic connective tissue disease and I wish she would acknowledge that drastic difference. EDS is what traumatizes the nervous system, its a constant unavoidable source of physical trauma so doing healing work on the nervous system would help the symptoms of its longterm damage, but it would be a constant management not a "do a thing for a few months and healed bam!". Childhood trauma and constant physical trauma from chronic illness is a double whammy of shit on the nervous system but you cannot put EDS in the catagory of things "healed" when working on the nervous system. You can heal some of the damage, and especially help with POTS that would be the most significant help, but i can't meditate and heal my genetic code to start making functional collagen. You have to do a careful constant set of management techniques to deal with symptoms. Physical therapy to recover from and prevent injury. Feldenkrais to work on proprioception and relearning how to move. Canes, walkers, or chairs to prevent falls and provide independence and mobility. Braces and splints or surgery as needed for joints that are the most unstable. A million other little things unique to the person. You have to find a balance of activity and rest. Medications if needed. Treatment for POTS, adrenal fatigue, or any of the hundred comorbidities that tag along with the genetic glitches EDS provides. Working to heal the nervous system would help with a lot of the comorbidities, and with the whiplash of constant injuries, but I just want this condition to be spoken about realistically. It takes a lot of work, and is exhausting, and there is simply no easy solution. Its disrespectful to imply there is. Just present it as another important tool in the toolbox of management. It would be great if you did a video discussing how chronic illness, instead of being caused by childhood trauma, is causing trauma and can cause it from childhood, and can damage the nervous system. Talk about it realistically. Talk about how having a constant practice to care for your nervous system can help with chronic illnesses, NOT CURE THEM, and be honest about it being a constant practice and management as the trauma is ongoing. Talk about where medical/physical trauma and childhood trauma intersect, combine, and are separate, but have the same effect and magnify each other. I'm so tired of chronic illness being talked about like its some silly thing we brought upon ourselves from childhood trauma and through enough meditation and deep breathing we will magically not be chronically ill. There is a way to discuss where these subjects intersect without invalidating the medical realities of genetic, chronic illness. My hip rips out of the socket like a kid pulling the limbs off their barbie doll. I can't meditate that away. My autoimmune disorder destroys the small fibers throughout my body, burning nerves like a fire through my skin, killing the nerves that make my stomach properly digest food and muscles properly function. I have to rely on my medications just as much as I rely on my meditative practice and EMDR in therapy to deal with the trauma its caused. There are often two sides to any healing journey. Please be honest about it.
I believe I am in that chaos. Hmm where to begin?
Hi Erin Wells, Jen here from Team Lyon. Have you seen Irene's free 3-part Healing Trauma video series? If not, that can be a good place to start, by learning more. I'll link to it here in case you want to give it a watch.
Healing Trauma - irenelyon.com/healing-trauma
Please pray for me
Can someone from Team Lyon explain Irene’s take on EDS? I thought it was genetic and therefore irreversible?
Hi Gabby Smith, Jen here from Team Lyon. As Irene and those of us on Team Lyon are nervous system practitioners and not medical professionals, we can't speak to whether a particular condition or disease is reversible from a medical perspective.
What we have seen is that many people have seen a lessening of symptoms - occasionally to the point where they disappear - when they take steps to grow nervous system regulation and capacity. This is by no means a guarantee that this will happen, and in the case of many chronic conditions more is often possible than traditional allopathic medicine suggests.
There is also a growing body of research that suggests that trauma can be passed on from our ancestors, so that may be something to consider re things being genetic.
Nice tan Irene 🙂
All these things are realized to Asperger's ADHD that's the reason
The story only mentions vague relief from pain...eds has wayyy more symptoms. Organ rupture? Stoma bags?
😮😮😮
This is at best, insulting. And all the eds people in the comments being so polite. 😊
No one cured pots till today
Heaps of people have
@@TheBushRanger. how?