Connective Tissue Disorders/Ehler Danlos, the ECM and Chronic Issues - MCAS, CIRS, POTS, CFS, IBS, Dystonias, Pain, Proprioceptive Disorders, ETC.!

[Fluffy]

There is testimony of a woman named Elizabeth from Sweden who was diagnosed with Ehler-Danlos, POTS, and fibromyalgia. She was living in incredible debilitating fatigue and pain, but refused to let the diagnosis become her fate, and went looking for answers. She found that one of Irene Lyon's nervous system courses, based on a blend of Somatic Experiencing and Feldenkrais, has helped clear up all of her symptoms. Quite a remarkable story. There are a few other videos where she shares updates. The relief has not been transient, either - she's still feeling great even years later!

This is good to know, I think. In one interview, Irene asks Elizabeth if she thinks her genetics have changed. I liked this question, because the term 'genetic disorder' or 'hereditary syndrome' has the flavour of 'your diagnosis is your fate' to it. I think I subconsciously applied this to myself - I have a genetic issue, and given the severity of my symptoms, it was easy to get stuck in my thinking about it when in so much pain and discomfort. It was disheartening to say the least. Elizabeth's story gave me a good example to follow and opened up the door to healing again - thinking in unlimited terms. Regulating the nervous system probably didn't change her genetic code, just the way in which the code is expressed. A good reminder that DNA isn't a fixed destiny, it is a language that includes a huge range of potentials and possibilities. It all depends what letters and words we choose to use for the story we tell ourselves.

So trying to figure it out - given that 1) the nervous system is the basic platform for our lived experience, based to some extent on our gene code, 2) EDS is also genetic, 3) trauma effects the way our genes express, 4) so then trauma effects expression of EDS and other syndromes, 5) we inherit trauma from our ancestors, from past-lives and from this-life, and 6) nervous system therapies can release ancestral trauma, as well as past-life trauma and this-life trauma, 7) leading to reduced load on the nervous system, and reduced expression of debilitating syndrome effects. Anyways, that's my attempt to make sense of Elizabeth's story of finding her way into a healthy new experience of life.

Very interesting what she says about plants dying. My indoor ones I’ve had for many years are okay, I suppose they’re used to me, though the new ones I purchased this year, seeds and seedlings that I’ve tried to grow have either died, aren’t flourishing, or seem to be sick even in the same garden that plants I’ve had for years are thriving.

I did make the connection about my stress and physical health issues, so now if I’m doing that to plants I can only imagine how I’m affecting my whole environment.

 

[Chu]

There is testimony of a woman named Elizabeth from Sweden who was diagnosed with Ehler-Danlos, POTS, and fibromyalgia. She was living in incredible debilitating fatigue and pain, but refused to let the diagnosis become her fate, and went looking for answers. She found that one of Irene Lyon's nervous system courses, based on a blend of Somatic Experiencing and Feldenkrais, has helped clear up all of her symptoms. Quite a remarkable story. There are a few other videos where she shares updates. The relief has not been transient, either - she's still feeling great even years later!

This is good to know, I think. In one interview, Irene asks Elizabeth if she thinks her genetics have changed. I liked this question, because the term 'genetic disorder' or 'hereditary syndrome' has the flavour of 'your diagnosis is your fate' to it. I think I subconsciously applied this to myself - I have a genetic issue, and given the severity of my symptoms, it was easy to get stuck in my thinking about it when in so much pain and discomfort. It was disheartening to say the least. Elizabeth's story gave me a good example to follow and opened up the door to healing again - thinking in unlimited terms. Regulating the nervous system probably didn't change her genetic code, just the way in which the code is expressed. A good reminder that DNA isn't a fixed destiny, it is a language that includes a huge range of potentials and possibilities. It all depends what letters and words we choose to use for the story we tell ourselves.

So trying to figure it out - given that 1) the nervous system is the basic platform for our lived experience, based to some extent on our gene code, 2) EDS is also genetic, 3) trauma effects the way our genes express, 4) so then trauma effects expression of EDS and other syndromes, 5) we inherit trauma from our ancestors, from past-lives and from this-life, and 6) nervous system therapies can release ancestral trauma, as well as past-life trauma and this-life trauma, 7) leading to reduced load on the nervous system, and reduced expression of debilitating syndrome effects. Anyways, that's my attempt to make sense of Elizabeth's story of finding her way into a healthy new experience of life.

Beautifully expressed as usual, @iamthatis ! I think there is a lot of truth to it. Another way to think about it is that our genes are the "mold" we are born into (just like our zodiac sign, for example). But there is freedom and variability in terms of how they will get expressed. Each gene (and each sign, say) has its positives and negatives, and depending on how we conduct our lives and what we "tune into" via our genes, a lot can happen. It is also linked to the lessons we came here to learn. So, it's about discovery, working with what we each have, and making the best out of it. OSIT.

I watched the video quickly, and didn't catch what she was saying about Feldenkrais. I can't talk about it authoritatively, because I only had two classes on it in my life, but I think it can be extremely beneficial for working on the fascia, posture and pent-up emotions. I have benefited a lot from Holistic Gym, thanks to @France, and she is much better equipped to explain the differences between the two approaches. Anyway, that and Somatic work can be very healing, I think, on top of whatever you need to do to support, manage and even heal some of these usually called "untracktable" diseases. Not just at a physical, but also at am emotional level.

I hope this is not too off-topic!

 

[France]

I have benefited a lot from Holistic Gym, thanks to @France, and she is much better equipped to explain the differences between the two approaches. Anyway, that and Somatic work can be very healing, I think, on top of whatever you need to do to support, manage and even heal some of these usually called "untracktable" diseases. Not just at a physical, but also at am emotional level.

The biggest difference between the two approaches is that Holistic Gymnastics uses equipment to release tension and then work on posture.
These gentle gymnastics approaches are based on the movements babies make as they develop and learn to walk.
In Holistic Gymnastics, we meet with people individually to listen to their needs and check their posture.
Classes are given to a group of people, and we choose specific movements to help the group. It is a process that requires taking time during the movements, as slowness is one of the keys to the healing process.
During a class, there are phases of preparing the body through breathing and relaxation in order to mobilize the joints, followed by stretching and toning. These steps are repeated in each class if you attend as a group.
There are practitioners who work only with individuals. It's different.

I preferred Holistic Gymnastics because I love working with equipment to give the body the chance to release deeply. There are often hidden tensions in the fascia that make a joint less mobile, so the compensation in the posture remains tense.
This approach "Gymnastique Holistique" started by

Elsa Gindler
1885 - 1961​

her student:

Lily Ehrenfried
1896 - 1994 ....​

I also enjoy attending FeldenKrais classes. It gives me a different but interesting sensation.
Feldenkrais's approach :

Moshe Feldenkrais 1904-1984​

I am posting a reference for a colleague who teaches Holistic Gymnastics in France, but if you live in another area, there may be someone near you.

Où pratiquer? | Art Mouvement Santé

L'association propose des ateliers à Lahonce, Bordeaux, Lyon et en ligne via Zoom.

www.artmouvementsante.fr

For my part, I can say that my training in Holistic Gymnastics liberated me from trigeminal neuralgia and many other tensions in my body.
Teaching groups of men and women for 18 years helped me slow down the rhythm of my life. My adrenal glands recovered, as did many other aspects of my posture. I will always be grateful for everything this bodywork has given me and continues to give me every day.
A teacher always learns from their students. This has been the case for me. Through teaching, I have understood that you cannot push the body to get quick results. There is a process, there is cellular memory, and there is a whole history to respect. Suggesting movements and observing the process of change in others means listening to the words (pains) that the body expresses.

Above all, teachers must repeat movements over and over again to really feel what is happening in the body. It is first and foremost a work on oneself before teaching.