Ehlers-Danlos Syndrome (EDS) – another approach when surgeries and medications aren’t helping

Rising (Le Lever) (1909) by Pierre-Auguste Renoir. Original from Barnes Foundation. Digitally enhanced by rawpixel.

What is EDS? Ehlers-Danlos Syndrome is “a group of inherited disorders that mostly affect the skin, joints, blood vessels and connective tissue. It is seen through symptoms like overly flexible joints that can dislocate, or skin that’s translucent, elastic and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels. Treatment helps manage symptoms and monitor for complications. Traditional options for treatment include drugs, physiotherapy and sometimes surgery.”

What it is for “Laura” (not her real name) is hard-work. She aligns with 4—5 of the 13 diagnosable variants. She was happy for me to share some of her story here, so others may gain understanding and/or seek treatment.

“Laura” was only diagnosed with this in her 40’s by a dermatologist and it’s never been formally tested. She thought something must have happened in her mother’s first trimester, as everything in her body seemed faulty.

She struggles with low blood pressure and severe allergies and literally split herself apart with her two children: She has had her vagina reconstructed of the vagina and her bowel and bladder pinned back into place a hysterectomy, gall bladder removal, a hiatus hernia on top of other repeated hernia’s. She has an angry wound from a mozzie bite which is 8 months old. Sometimes she can wake in the morning, stand up and realise that her bladder is now going to be trapped in an uncomfortable position for the rest of the day. But even with all this, she is hugely positive and manages her condition extremely well and proactively. Her stomach may start compressing her lungs, impacting her breathing while she’s doing yoga but she just pokes and prods parts of herself back into place when they pop out.

Our first session together was amazing. Laura’s body really responded well to the touch and presence of a “neutral listener”. Areas of “stickiness” softened, over-heated areas cooled and we both felt shifts in her body that related to some of the traumatic experiences her body had gone through.

The whole structure of the body seemed to be “seeing” itself in many different parts and ways and areas where Laura perceived long held stuckness and blockages opened to
allow shifting and reorganization. Compressed areas shifted and made space for themselves and tense areas softened while low vitality tides in the body gained potency.

When I began at her feet, Laura’s system felt like it housed untethered floating globules rather than presenting as a longditudinal wrapping of fascia and connective tissue we
normally expect to feel. By the time I got up to the cranial base her system was responding keenly, working to readjust itself for greater comfort and cohesion in very tangible ways.
She reporting feeling things she hadn’t felt since a teenager. ‘I just felt a hunger pang. I haven’t had one of those since I was a teenager.’

I love this work.

COVID-19 has ramped up your nervous system – how craniosacral can help rebalance it

Your social engagement system is your first line of defense before ‘fight or flight’ or ‘rest and digest’ – it needs down-regulating too.

Craniosacral is about listening to the body as a whole. When you cut your finger your body knows to send defenders to clot blood and create a scab; when the body is optimal, the whole body repairs in the same way. But what happens when those signals get subverted? Not only do we have a Western medical model, segmenting, diagnosing and pathologising sufferers, but we are coming off the back of a global pandemic where ALL of us have faced challenges and many of those with a history of mental illness have been thrust back into the depths of their traumatic response. During lockdown in New Zealand, we had a 50 percent increase in texts to Youthline while calls to Lifeline increased 25 percent.

Treating the last month or so from my inner city clinic, has shown that even though we are enjoying Level 1, things are definitely not ‘back to normal.’ A large proportion of my clients are presenting with some form of trauma response. COVID-19 has been the last straw on already overloaded systems with most people presenting with an autonomic nervous system ‘buzz’ or ‘tone.’ What I wasn’t prepared for was this expressing in clients social engagement system (ventral vagus). We have been told we can’t connect, engage with others or communicate in the ways we are used to. Whether you are an introvert or an extrovert; this period has been highly challenging to the way we connect to our loved ones, colleagues and buddies — and on top of this researchers confirming the taxing nature of screen-time that results in our Zoom fatigue.

I knew what I was feeling in bodies but little did I know that, back in April, Stephen Porges, the key researcher of Poly- Vagal theory and our social engagement systems, wrote about this very issue.

Porges states, ‘in the absence of an active social engagement system, the mobilized state provides an efficient neural platform for fight and flight behaviours. For many individuals, this state will reflect chronic anxiety or irritability. When mobilization does not successfully move the individual into a safe context, then there is the possibility that the nervous system will shift into an immobilized state with associated features of death feigning, syncope, dissociation, withdrawal, loss of purpose, social isolation, despair, and depression.’

He acknowledges that ‘the optimally resilient individual has opportunities to co-regulate physiological state with a safe and trusted other. Ideally, this “other” person projects positive cues regarding their autonomic state through prosodic voice, warm welcoming facial expressions, and gestures of accessibility.’ This is what I do in my clinic room.

I create a calm, safe space. You are warm, blanketed, fully clothed and brought back into a safe awareness of your body. With trauma, I gently guide clients to come back into relationship with the parts of themselves that have dissociated for good reason. It’s a smart system that decides that neck pain, or that level of stress is too much right now and takes action. We take time to find the places of health in your body, so your neural pathways can get the message to move your limbic system out of high alert and back into safety.

Some of us have managed to maintain connection during lockdown, others have really struggled. Non-judgmental, anatomically-informed neutral touch, allows the body to come into safety and discharge some of these inherent patterns, that may have lain dormant for decades, now resurfacing.

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Craniowaves – WellHub,
Zephyr House,
Level 1 – 82 Willis Street,
Wellington , 6011
New Zealand