Bodies that bend: dealing with hypermobility and the ehlers-danlos syndromes (EDS) the naturopathic way
When bodies can bend in ways they aren’t meant to, we often laugh, gasp in awe, or turn it into a party trick - hey, that’s so cool, how do you do that?! But often there’s a somewhat darker side to double jointedness that most people significantly underestimate…
Ehlers-Danlos Syndromes and Hypermobility
Ehlers-Danlos Syndromes (which includes 13 distinct subtypes) and Hypermobility Spectrum Disorder are increasingly on the radar of health professionals the world over, and with good reason: this collection of seemingly rare conditions have historically been under-recognised, under-diagnosed, and sufferers have struggled to put the pieces of their bodily puzzles together for decades.
Connecting Dots
In my clinic, I work with many people struggling with hypermobility, who’ve never put the dots together. Often they present initially with gut dysfunction - motility issues, slow digestion, reflux, or allergies and mast-cell issues - or hormone issues, but on questioning, we move into other co-morbids. Attention difficulties, suspicions of ADHD or neurodivergence, chronic sleep disturbances. Racing hearts, dizziness or fainting on standing or being upright too long - POTS, allergies that come and go without rhyme nor reason - MCAS - and a history of chronic dislocation.
They bruise easily, heal slowly, and many prolapse or have history of hernias and varicose veins. Stretch marks without weight gain. Dizziness, anxiety, autonomic nervous system dysfunction. Abnormal scarring. Some will have abnormally stretchy skin, though most won’t realise it, and most will be able to hyperextend a variety of joints. Some have a family history of strokes, heart conditions, bleeding disorders and aneurysms, especially within the vascular subtype.
Teeth are often full of holes despite a reasonable diet, but they’re terrified of the dentist as local anaesthesia doesn’t work for them, so the trauma is very real. They’re usually in chronic pain, they wake up sore from clicking and popping in the night, and as they sit in front of me, they shift and squirm and jiggle in their seat, unable to get comfortable.
How to Help
Each person experiences things differently, and with 13 different subtypes, every person will be very different in both presentation and severity. Some will get through life relatively ok and deal with things as they come up, whereas others have very significant disability caused by these poor collagen bonds and struggle with severe pain and life-threatening illness as a result. Virtually all will have a complicated health history of seemingly unrelated conditions, and a body that “just does weird stuff”, and all are deserving of support, empathy, encouragement, and for people to listen and not dismiss them and their lived experience.
One of the most common and heartbreaking patterns has been a tendency for health providers to suggest things are “all in their head”, as they aren’t necessarily aware of these connective tissue issues and can’t provide any other explanation for the chronic ill health the individual is afflicted with. This inevitably leads to trauma, stress, and further issues for the already struggling person to have to work through.
Naturopathic Support for EDS and HSD
As a naturopath, my job is to connect dots and look to the underlying causes of people’s health conditions. And when it comes to EDS and HSD, these seemingly disconnected complaints are all unified by one thing: connective tissue, the matrix that joins our bodies together and holds things strong, but in a subset of the population just doesn’t form properly.
The causes are genetic - though the gene behind the hypermobility subtype of Ehlers-Danlos Syndrome has yet to be identified - and it runs in families. This often makes it harder to identify as for many patients, they don’t realise their red flags aren’t normal. One of the phrases I hear the most is “doesn’t everyone do that?”.
Having said that, there is usually plenty we can do to support bodies who don’t form collagen properly. In clinic, my strategy generally involves the following (and often even more, depending on the individual):
Lowering inflammation, because people tend to ‘flare’ when inflammation is up. Cooling inflammation and getting things back on track is critical to keeping symptoms to a minimum.
Supporting gut health. I find the G.E.M.M. Protocol fantastic for this as it works on many of the underlying causes, addressing inflammation, oxidative stress, the microbiome, the gut-immune interface and many other aspects of gut health simultaneously.
Supporting nutrition, because you can’t out-supplement a poor diet, and ensuring the right nutrients are going in to help create connective tissue that’s as high quality as possible, even with a genetic predisposition towards it being dysfunctional, is key.
Targeting high-quality supplements and herbs to support connective tissue strength and integrity, and work with the symptoms the individual is struggling with, to achieve the best function possible for that person within their body’s means. And no, this doesn’t mean throwing collagen at them!
Supporting hormones, methylation, other SNPs, and neurological health, and working to reduce pain and stress (which will always exacerbate any chronic health condition!).
Supporting a normal histamine and mast cell response through herbs and nutrients to enable a less reactive and troublesome daily life.
Looking for triggers that may have been overlooked and could be contributing to poor health - think mould, environmental chemicals, heavy metals, and so on - as these can make a big difference to how a body is functioning.
Referring to a network of other professionals who can support a person physically. This may include a GP or rheumatologist for diagnosis (which I cannot do), osteopaths, physiotherapists or chiropractors to support the musculoskeletal system, counsellors or similar for mental health support if required, and more.
I primarily use nutrition, nutrigenomics, lifestyle supports and herbal medicine to support this population. It’s something very close to my heart; as a hypermobile human who bends and pops and has one of these more sensitive bodies myself, I understand it well, both from lived experience as well as a naturopathic clinical perspective.
Whilst we’re unlikely to ever be able to ‘cure’ a genetic disease, and we may not be able to direct a body to create better collagen than it is genetically programmed to do, we can absolutely put supports in place to help our bodies function as well as they possibly can, relieve the pain, reduce the damage, and live a life that’s as good as it can be.
