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.