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

[Andrian]

Since I tend to have OCD tendencies, though, now less than a few years ago, especially when i'm stressed due to work or other reasons, I've had a look at what Alter AI has to say regarding a possible correlation between EDS and OCD.

Here below the transcript:

Yes — there is growing evidence and clinical observation suggesting that Ehlers-Danlos syndrome (EDS), particularly the hypermobility subtype (hEDS), can be associated with Obsessive-Compulsive behaviors and intrusive, obsessive thoughts. The mechanism isn’t as simple as a direct causal link, but rather a biopsychological cascade — physiological, neurological, and psychological factors intertwining. Let’s break this down:

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1. Neurological and physiological overlaps​

• Autonomic dysfunction (often POTS-related): Many people with EDS have dysautonomia (disrupted autonomic nervous system function). Chronic autonomic arousal (fight-or-flight overactivation) can heighten anxiety, perfectionism, and repetitive thought loops — fertile ground for OCD-like patterns.
• Chronic pain and hypervigilance: Pain constantly reinforces body-focused awareness. Over time, this trains the brain into compulsively monitoring sensations — a kind of somatic obsession that can morph into full OCD.
• Neurotransmitter imbalance: Some studies show differences in serotonin, dopamine, and norepinephrine signaling in EDS patients, possibly due to abnormalities in connective tissue integrity affecting vascular and blood-brain-barrier dynamics.
• Neurodivergent overlap: A significant proportion of EDS patients also meet criteria for autism spectrum or ADHD, both of which markedly increase the likelihood of obsessive or ruminative thought patterns.

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2. Psychological and behavioral factors​

• Control as coping: Chronic illness and unpredictable body symptoms can lead to a need for control, resulting in ritualized behaviors to manage uncertainty — clinically manifesting as OCD.
• Medical trauma & hyperawareness: Many with EDS endure repeated medical invalidation or misdiagnosis. This can induce trauma-related hyperarousal, reinforcing obsessive thought spirals about health, contamination, or safety.
• Perfectionistic personality profile: EDS individuals often present with high intelligence and perfectionism (possibly because those traits develop as adaptive responses to illness). OCD behaviors can emerge as maladaptive extensions of these tendencies.

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3. Physiological contributors worth examining​

EDS doesn’t exist in a vacuum — there’s often a metabolic and nutritional dimension that can worsen obsessive or ruminative thinking:

• Mast Cell Activation Syndrome (MCAS): Common in EDS, it can drive histamine-induced agitation and anxiety.
• Vitamin B12, folate, and iron deficiency: Common in EDS due to poor absorption; these deficiencies exacerbate anxiety and OCD symptoms.
• Chronic low-grade inflammation: Systemic inflammatory signaling (IL-6, TNF-α, etc.) can amplify repetitive thought loops through neuroinflammation in basal ganglia circuits — the same regions implicated in OCD.

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4. Addressing the issue holistically​

If someone with EDS experiences obsessive or intrusive thoughts:

• Address dysautonomia and inflammation first — stabilizing the body helps calm the mind.
• Behavioral therapies such as CBT and ERP (Exposure and Response Prevention) remain highly effective, but should be paired with physiological stabilization.
• Mind-body regulation work (polyvagal-informed breathing, cold exposure, gentle somatic exercises) helps rewire the nervous system.
• Medication (SSRIs, low-dose atypical antipsychotics) can help, but must be used cautiously given sensitivity to medication responses in EDS.

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Key takeaway​

OCD-like symptoms in EDS aren’t “all in the head.” They’re often somatic echoes of a dysregulated, over-alert body, where the brain locks onto repetitive survival loops. Treatment that blends neurological regulation, trauma-informed psychotherapy, and nutritional correction tends to yield the best results.

Edit: grammar.

 

[Gaby]

Since I tend to have OCD tendencies, though, now less than a few years ago, especially when i'm stressed due to work or other reasons, I've had a look at what Alter AI has to say regarding a possible correlation between EDS and OCD.

I think other researchers, typically non American, cover this aspect better. I would be careful with that American research. In Europe, the label "neurodivergent" doesn't officially exist. It's a BS label.

Bulbena (a psychiatrist from Barcelona) has done an excellent job describing the mental issues in Ehler Danlos patients, directly related to MCAS, proprioceptive disorders, autonomic disorders and the transparency of their bodies, making them more sensitive to energies as well.

Autism doesn't cut it because contrary to autistic people, Ehler Danlos spectrum disorder people gravitate towards the helping fields - nursing, social workers, doctors, etc. They want to socialize and be helpful. You can't label that autistic. If anything, is in the other side of the bell curve.

Severe anxiety is the common denominator. In fact, that is how Bulbena discovered mental issues in Ehler Danlos. He tested his patients labeled with depression or anxiety for hypermobility and realized this factor was overrepresented in his patients.

Then, you treat the allergies, the proprioceptive problems, the postural issues, and anxiety gets relieved. For me, 50 sessions of NeurOptimal finally quiet down my permanent anxious streak. It was the first time I felt I was not incapacitated by it.

The psychological issues are secondary to what is mostly, an organic issue. You can't funciton properly in a world when your body feels in "outer space" all the time. Millions of receptors are sending the wrong signals to the brain. You know that Stephen Porges, author of The Polyvagal Theory, got interested in the disease from the polyvagal point of view. He found it so interesting that the "interoception system" was so disrupted in Ehler Danlos and found a direct association with his polyvagal theory.

All the receptors work better when you work proprioception: body movements like Tai Chi which tells you where your body is, light massages, compressive garments, prisms in case of heterophoria, orthopedic and postural insoles. Also, food intolerances promoting MCAS will perpetuate the mental issues. And so forth.

OCD can be a more pronounced trait of someone who is just high in conscientiousness.

 

[Andrian]

I think other researchers, typically non American, cover this aspect better. I would be careful with that American research. In Europe, the label "neurodivergent" doesn't officially exist. It's a BS label.

Bulbena (a psychiatrist from Barcelona) has done an excellent job describing the mental issues in Ehler Danlos patients, directly related to MCAS, proprioceptive disorders, autonomic disorders and the transparency of their bodies, making them more sensitive to energies as well. [...]

[...]
OCD can be a more pronounced trait of someone who is just high in conscientiousness.

Thank you Gaby for the above information which makes total sense to me now. I've pondered on what you've wrote above and I sense that, and I hope to be right this time, during all these years I've got so used to having oftentimes heightened anxiety levels that I've mistaken it for OCD tendencies, mostly thoughts related and much less behavior related.

The below excerpt from your previous message rings a loud bell for me, wondering for how many of our members this could apply as well:

Bulbena (a psychiatrist from Barcelona) has done an excellent job describing the mental issues in Ehler Danlos patients, directly related to MCAS, proprioceptive disorders, autonomic disorders and the transparency of their bodies, making them more sensitive to energies as well. [...]

 

[Fluffy]

The below excerpt from your previous message rings a loud bell for me, wondering for how many of our members this could apply as well:

I could give hundreds of examples of different energies I’m sensitive to, some really fantastic ones like feeling a kind of bliss when I lay in the sun or my kids are loving on me (deep inner tingles like little pleasurable electric shocks), things that vary like TV, radio, emf, noise, artificial lighting, electrical appliances and also the other end of the spectrum, having longstanding troubles with negative attachments, some my own and others that I seem to pick up easily from other people’s bad moods and dissociations. I work hard to not be a feeding tube for 4D STS though I don’t know how well I do, sometimes I can picture myself as one of those fun twirly straws having the life sucked outta me. I have been on guard for so long, which alone is very exhausting, I’m tired a lot and have days where my functionality is limited so I do very little- as little as possible anyway. I don’t beat myself up about it or feel useless often anymore either, that just makes it all worse. I’m doing the best with what I’ve got.
I’m trying a new approach in the last week or so, instead of repelling negative energies I’m allowing things to move through me, envisioning that I'm water and the energies that aren’t mine are oil and can’t stick to me. Interestingly I’m sleeping so much better since I changed my protection practice and visualisation only waking once briefly at around 3 am. I’m still waking up startled like I’m supposed to be somewhere and I’m gonna miss the bus, but I can settle back to sleep fast instead of being awake for hours. I’m also having my ice bath before bed because it makes me lethargic an hour or so after I get out, that could be contributing to my better sleep too. I’m really learning to calm my ANS and with that I’m not as sensitive and reactive as I was a few months ago.

 

[Gaby]

The below excerpt from your previous message rings a loud bell for me, wondering for how many of our members this could apply as well:

4th Way Work principles apply here, remembering that "the worse the conditions of life the more productive the work, always provided you remember the work".

As I wrote earlier, people in this spectrum have been noted to have a higher rate of spirit attachments and they can be easily influenceable by negative energies (EDS spectrum disorders overrepresented in transgenders). Interesting that this data comes mostly from the U.S., which gets the most impacted by the frequency fence.

I reviewed literature by an old school French doctor and his team, who had thousands of Ehler Danlos patients in a time when the medical system was "healthier". He is an excellent clinician, a la "Sherlock Holmes". That is invaluable. The data coming out of his research reveals a healthier mental pattern in the EDS population. Psychic traits are not highlighted, but insightfulness, empathetic traits, rich emotional and imaginative life. They love to serve people.

You go the U.S. literature and you find BS labels like neurodivergent, transgenderism, etc. It's like their potential is hijacked for nefarious purposes. Not only that, there's probably a duality depending on the inner nature of each individual.

If there's difficulties getting grounded and activating the smart vagus, and they're sensitive to energies, that would usually be negative energies since we're in 3D STS controlled by 4D STS.

Retrospectively, all the health and wellness section of this forum has been very helpful, but also all the psychology and Work principles. And the clues from the Cs are invaluable: for shielding against attack, Knowledge input on a continuous basis, literally.

Here's the obyvatel and kundalini excerpts from In Search of the Miraculous (Ouspensky quoting Gurdjieff), a good recap against all the world's madness.

"In reality Kundalini is the power of imagination, the power of fantasy, which takes the place of a real function. When a man dreams instead of acting, when his dreams take the place of reality, when a man imagines himself to be an eagle, a lion, or a magician, it is the force of Kundalini acting in him. Kundalini can act in all centers and with its help all the centers can be satisfied with the imaginary instead of the real. A sheep which considers itself a lion or a magician lives under the power of Kundalini.

"Kundalini is a force put into men in order to keep them in their present state. If men could really see their true position and could understand all the horror of it, they would be unable to remain where they are even for one second. They would begin to seek a way out and they would quickly find it, because there is a way out; but men fail to see it simply because they are hypnotized. Kundalini is the force that keeps them in a hypnotic state. 'To awaken' for man means to be 'dehypnotized.' In this lies the chief difficulty and in this also lies the guarantee of its possibility, for there is no organic reason for sleep and man can awaken.

"Theoretically he can, but practically it is almost impossible because as soon as a man awakens for a moment and opens his eyes, all the forces that caused him to fall asleep begin to act upon him with tenfold energy and he immediately falls asleep again, very often dreaming that he is awake or is awakening.

"There are certain states in ordinary sleep in which a man wants to awaken but cannot. He tells himself that he is awake but, in reality, he continues to sleep—and this can happen several times before he finally awakes. But in ordinary sleep, once he is awake, he is in a different state; in hypnotic sleep the case is otherwise; there are no objective characteristics, at any rate not at the beginning of awakening; a man cannot pinch himself in order to make sure that he is not asleep. And if, which God forbid, a man has heard anything about objective characteristics, Kundalini at once transforms it all into imagination and dreams.

Remember that work cannot begin and cannot proceed on a level lower than that of the obyvatel, that is, on a level lower than ordinary life.

"People who are definitely thinking about ways, particularly people of intellectual ways, very often look down on the obyvatel and in general despise the virtues of the obyvatel. But they only show by this their own personal unsuitability for any way whatever. Because no way can begin from a level lower than the obyvatel. This is very often lost sight of on people who are unable to organize their own personal lives, who are too weak to struggle with and conquer life, dream of the ways, or what they consider are ways, because they think it will be easier for them than life and because this, so to speak. Justifies their weakness and their inadaptability. A man who can be a good obyvatel is much more helpful from the point of view of the way than a 'tramp' who thinks himself much higher than an obyvatel. I call 'tramps' all the so-called 'intelligentsia'— artists, poets, any kind of 'bohemian' in general, who despises the obyvatel and who at the same time would be unable to exist without him. Ability to orientate oneself in life is a very useful quality from the point of view of work. A good obyvatel should be able to support at least twenty persons by his own labor. What is a man worth who is unable to do this?"

To shield the sensitiveness against negative energies, we have to double down on psychic hygiene and the Cs have given plenty of clues throughout the decades to stay clean and maximize the potential.

 

[Andrian]

[...]
To shield the sensitiveness against negative energies, we have to double down on psychic hygiene and the Cs have given plenty of clues throughout the decades to stay clean and maximize the potential.

I agree, it's a matter of each one's responsibility to deal with their own life path and lessons according to the choices they're making, that is, following the path towards an STO or STS destiny.

Anyway, just wanted to highlight this fact, an obvious one, but still.

 

[Yas]

You go the U.S. literature and you find BS labels like neurodivergent, transgenderism, etc. It's like their potential is hijacked for nefarious purposes. Not only that, there's probably a duality depending on the inner nature of each individual.

If there's difficulties getting grounded and activating the smart vagus, and they're sensitive to energies, that would usually be negative energies since we're in 3D STS controlled by 4D STS.

I always remember what you said that "it's the soul that matters" too.

While looking into this EDS topic, what I'm finding is that perhaps there could be many cases where there's a person with EDS who has a lot of people with mental health issues in the family, many members may not show insight or high empathy but one my show these traits, as if something in this person helped lean more towards the positive. I always wonder why that happens, and of course, we may never know, but my guess is that in some cases it may have to do with the soul merging with the genetic body and helping modify the genetic expression towards something more positive.

A similar thing can happen with many genetic expressions, for example, I've been researching the role of 5-HTTLPR short alleles in mental health. Here's a summary:

The 5-HTTLPR short (s) allele is a common regulatory variant in the promoter region of the serotonin transporter gene (SLC6A4). Compared with the long allele, the short allele is associated with lower transcriptional efficiency, resulting in fewer serotonin transporter proteins and altered serotonergic signaling. A large body of research has linked one or two short alleles (SS or SL) to greater emotional sensitivity to stress, particularly in adverse environments. In these contexts, the SS genotype has been associated with higher rates of depressive symptoms, anxiety, and—especially in adolescents under significant stress—greater risk of suicidal behavior or mood episodes. Neuroimaging and developmental studies also show heightened reactivity in emotion-related brain circuits, alongside frontal activity patterns associated with withdrawal and negative affect, which can increase vulnerability under chronic stress.

However, more recent research has reframed the SS genotype not simply as a “risk” profile, but as a differential susceptibility or plasticity phenotype. Individuals with the SS genotype appear to learn more intensely from their environments, for better or worse. While negative environments can have a stronger impact, supportive, structured, or therapeutic environments also produce disproportionately positive effects. SS carriers often show greater benefit from psychotherapy, stronger emotional insight, deeper processing of relational experiences, and higher levels of post-traumatic growth when adequate support is present. This heightened sensitivity translates into greater adaptability and emotional learning, rather than fixed vulnerability.

In this light, the SS phenotype is best understood as context-dependent rather than inherently pathological. It confers increased responsiveness—amplifying adversity in harmful settings, but also enabling exceptional psychological integration, empathy, creativity, and meaning-making in nurturing or reparative ones. The same biological sensitivity that raises risk under stress can, under the right conditions, support resilience, growth, and emotional sophistication, which is why SS carriers often show some of the most striking positive outcomes following effective therapy or stable support.

I know it has nothing to do with EDS and connective tissue problems specifically, but I thought this was very interesting because it comes to show again that our genetic makeup influences our experience, of course, but there are also many factors that influence how exactly this genetic profile may manifest, for some it may be a risk factor, for others it may be something that helps learn more. Of course, there are many "worldly" factors that are directly influencing this, but one of these factors may be the soul too.

Also, knowing about our profiles may help us have strategies that promote a healthy body and mind so that the soul can actually manifest itself better. So keeping a good diet, taking supplements, and taking care of our mental hygiene and mental health in general may allow people to better handle the "worldly" factors that are impacting the genetic expression.