The first time I ever worked with an Ehlers-Danlos syndrome (EDS) person was in my office. They had come to me as a referral. Nothing was helping this person and their MD wondered if traditional Chinese bodywork therapy might provide some relief. At the time, I wasn’t sure what was going on with this individual. All I knew was that their skin felt velvety and loose, like water, and that when my fingers palpated at the joints, the sinews were fine and papery. When I asked, they allowed that yes, they were extremely flexible. More questions elicited a history of a dislocated joints and other related injury. Concerned, and wishing to provide the best care possible, I later searched for as much information as I could find about hypermobility and EDS. Eventually, I started to attract more people like this to my treatment table in my offices in Austin, Texas, and, in response, I have developed a real sense of care for not just these clients but also for this condition. It’s a serious one, and one that deserves attention well beyond the rare or orphan disease community.
Traditional Chinese medicine, especially bodywork and herbal treatment, can potentially be of great use to EDS people. It is a lineage of medicine that has flourished for over two thousand years, and contemporary research is demonstrating more and more that its principles are sound.
Do you have really loose joints? Do you ever watch Cirque de Soleil performers and not even wonder how they manage to contort to such a degree? Or maybe you see someone in a wheelchair who looks perfectly healthy in every way, like the amazing burlesque dancer with EDS, Caitlin Myers (read her story here) and you can relate. But really, and despite all outward appearance, that person is in a wheelchair for a reason.
It could be that someone you know, someone in your family, someone dear to you has has soft, stretchy skin and the stretchiest shoulders imaginable.
What is this? And what can be done to make life easier for people who fit the descriptions, above? Just because there is no cure does not mean that a person is consigned to a life of discomfort and disability.
Did you know that Chinese medicine, and particularly the manual therapy known as tui na, plus moxa, might help?
The short version that I give when I explain this syndrome is to reference Cirque de Soleil. People understand that professional artist-contortionists are not able to achieve such postures simply because they practice diligently. Just like some bodybuilders are able to put on solid muscle really easily due to genetic gifts, there are athletes on the other end of the scale whose musculature lengthens readily and this can be due in part to genetic disorder of the connective tissue.
If a hyper mobile person is lucky, I explain, they can end up with a great career. (One such story is that of Louise Stewart-Scott, a teenager with EDS who actually does dream of joining Cirque de Soleil, linked here). If they’re not so lucky, they end up with a host of ailments and a lot of pain. Many people with this condition tend towards the latter result and even milder manifestations of it can cause issues. Fortunately, Chinese medicine can help.
That said, it is also true that this is not a simple issue.
The more complicated explanation, then, is that flexibility presents on a spectrum. Not all hyper-flexibility is EDS. There are actually now thirteen major subtypes of this disease. Diagnosis can be challenging and is determined by criteria set forth that comply with a list of symptoms known as the Beighton Scale. Generally, it is a geneticist who will diagnose the condition (as you see here).
Ehlers-Danlos syndrome of the hypermobility type corresponds with what is known as joint hypermobility syndrome (JHS/EDS-HT). Though not routinely diagnosed as such unless there are problems, JHS/EDS-HT is probably the most common heritable connective tissue disorder. Review of medical literature demonstrates that the terms can be used interchangeably, though Ehlers-Danlos syndrome (EDS) tends to be reserved for patterns that are markedly severe and even potentially fatal. At its most extreme, EDS affects a constellation of body functions. Symptoms include but are not limited to: dermal fragility or excess softness, rupture of internal organs or vessels, and/or notable joint hypermobility. The syndrome is also aligned with a greater tendency towards anxiety disorder, migraine, decreased quality of life, and potential early morbidity.
~~~What It’s Like~~~
In its most common manifestation (e.g., EDS-HT or hypermobility type), a patient can present with the aforementioned tissue or vessel rupture, a tendency to bruise easily, weakness, fatigue, and anxiety disorders. Studies are inconclusive regarding anxiety, but it makes sense, doesn’t it? The effects of living within a hyper-flexible body and all that go along with it can be exhausting. Dealing with the challenge of getting a proper diagnosis can be draining. And what of daily obstacles to things that many take for granted? This article about having one’s arm dislocated by a massage therapist, linked, is told in a light and funny manner but I read it and cringed. Several of my hypermobile patients have stories about appointments with an LMT or a physical therapist that resonate with what happened to Angela Clarke.
Some of the studies I have read indicate that the connection between anxiety disorders and EDS are multiple. For instance, Cederlöf, et al, assessed the risk of psychiatric disorder in EDS-HT populations via a national wide population-based matched cohort study in Sweden and found that persons diagnosed with EDS and hypermobility are at an increased risk of psychiatric disorders. The researchers stop short of drawing a cause and effect relation, noting that siblings are also at risk and that “Because siblings without EDS or hypermobility syndrome carried an increased risk of being diagnosed with a psychiatric disorder, we suspect that these associations may be due to genetic and shared environmental factors” (p 7). But being stretchy is stressful and nobody challenges that. Albayrak, et. al., for instance, note that depression, fatigue, and lowered quality of life are characteristic of not only EDS but also the so-called benign joint hypermobility syndrome, or BJHS, which is similar to EDS but without the pronounced rheumatoid symptoms.
Self-care, and not just for your body, is crucial.
~~~What Can You Do?~~~
Medical treatment of EDS is limited. According to the Genetic and Rare Diseases Information Center (GARD), treatment is primarily focused on prevention of major side effects and pain relief. Ultimately, a patient may require surgery to stabilize joints if the disease progresses to an extreme degree.
Chinese medicine, for its part, does not have a specific name for EDS but, instead, will treat the syndrome pattern as it presents in clinic (British Acupuncture Council). Generally, though not always, we will categorize this syndrome as being a case of Liver (which controls the sinews) is overacting on Spleen (which control the muscles). Most practitioners, from AOBTA-CP bodywork therapists (as I am currently) to licensed acupuncturists (as I will be once I finish board exams, which will be soon) (Update: I am done with boards and duly licensed) will expect a team approach and assume that you have an MD and some specialists who regulate and oversee your primary treatment plan, especially if your condition is severe.
For pain or anxiety or the general emotional wellbeing aspect, though, you might choose to rely on your Chinese medical care provider (it also can help to have a psychotherapist in the mix for this). It all really depends.
Manual therapies such as tui na, or Chinese medical massage, calibrated in pressure and intensity for the delicate skin and tissue of an EDS patient, in conjunction with herbal formulas and external pastes, are one potential vector for patient improvement. In my experience thus far, my EDS people aren’t too excited about acupuncture. They really do prefer the bodywork option. However, acupuncture treatments that take into account fragile skin and the requirement for very fine needles and caution with needles depth can help (see here). The young woman in the second story I reference, Louise Stewart-Scott, derived great benefit from acupuncture treatment and your mileage may vary.
My own experience in clinic and in my office is that my EDS people do incredibly well with moxibustion treatment. What I have found to work very well is gentle and very detailed work on affected regions, with herbs to warm and nourish. My clients find it soothing and I can feel the tissue plump up and become stronger beneath my fingertips. That doesn’t mean that the condition is resolved, but it does have the potential to help relieve pain and stress. My longer-term clients have shown some lasting results and I do expect that I will write up case studies as my career progresses. For now, though, I can say with conviction that moxa and tui na do seem to help people feel less pain and anxiety and more calm and ease.
Anything that warms and strengthens the tissue while soothing the nervous system is of great benefit to my clients, I’ve found. In addition, it really makes a difference to figure out ways to strengthen in other areas that can be fortified. If the physical body cannot be toughened up the mind can, just as you saw with the linked stories of Caitlin Myers and Louise Stewart-Scott.
Making lemonade out of lemons doesn’t mean that a person has to become a burlesque performer or a contortionist, obviously, but self-knowledge and self-care go a long way.
For that, health coaching can be ideal. (See this link if you’d like to know more about my brand of health coaching, here).
Knowing your limits and setting good boundaries is important.
None of my clients have had their arms yanked out by a massage therapist but I have seen what an EDS back looked like after too-vigorous cupping by a massage therapist. I was horrified and astonished that the therapist apparently didn’t know better than to vigorously treat such soft tissue, but they weren’t trained in Chinese medicine and might not have had the knowledge or skill to give an apt-for-this-person cupping treatment. A lot of people think that having super dark cupping marks is a sign of having gotten their money’s worth and people who don’t really know what they’re doing with cups will do just that. It’s not a tactic that works well for an EDS client, however.
Ask your practitioner what they know about EDS before treatment. If they don’t know what it is, that tells you something. If they have no plan or strategy for working with a hypermobile client, that tells you something.
Your best bet (in my opinion) is to go to a practitioner who is either trained in Chinese medicine or, at the very least, is someone who knows what EDS is, someone who has experience, and someone, ideally, who actually enjoys working with this population.
Whatever you do, my advice is to at least try Chinese medicine. As you see, it’s not just needles. We have so much we can do for you, and many of us in the field got here because we, too, have odd diseases of our own, ones that only TCM seemed to be able to address. (Yes, I blogged about that too, here). And even if you’ve tried Chinese medicine once or twice and gotten no relief, try again with someone else. Different practitioners have different interests, and–just the way you find a specialist in Western medicine when you want an optimal outcome–you need to be with one who is genuinely interested in this condition for best results.
But how can you find a practitioner?
If you’re in Austin, TX or nearby you are in luck. You can come see me for traditional Chinese bodywork treatment. My online booking system is easy to navigate, here, and I have offices up North and down South so that you don’t have to battle MoPac to get to me. If you are far away, I can also offer you guided meditation and distance health coaching via telephone. If you are interested in tui na treatment and are not nearby, check out the link for the AOBTA, (American Organization for Bodywork Therapies of Asia), to find a practitioner, here. If you can’t find anyone, send me an email or a Facebook message (contact information is linked below) and I will do my utmost to help you to find someone. I am sincere when I say that this is a condition that I really care about, and it’s one that my signature modality treats wonderfully in many cases. If there’s anything I can do to help you to find your right practitioner, I will do my best for you!
Traditional Chinese medicine might just be what’s missing in your health- and self-care plan. Are you ready to try something new and to maybe find some relief and relaxation? When you are ready, we are here, with over two thousand years of wisdom and practice to support us for the benefit of you.
Albayrak, İlknur and Halim Yilmaz, Halil Ekrem Akkurt, Ali Salli, Gülten Karaca. (2015) “Is pain the only symptom in patients with benign joint hypermobility syndrome?” Clinical Rheumatology 34:1613–1619
Cederlöf, Martin, and Henrik Larsson, Paul Lichtenstein, Catarina Almqvist, Eva Serlachius, and Jonas F. Ludvigsson. (2016) “Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings.” BMC Psychiatry 16:207
Two Hearts Wellness is a local holistic health and wellness outfit with a passion for all things nourishing, including but not limited to: joyful living, great food, art, and literature, and–of course–traditional Chinese medicine. If you want to learn more about me, click here and do feel free to follow my blog and/or my Instagram, connect with me on Facebook, or contact me here to set up an appointment for health coaching services. If you are interested in acupuncture, herbs, and/or Asian bodywork therapy, click here to book an appointment online.
Acupuncture is great for you but if you’re nervous about needles there are certainly other options. Have you ever thought to try traditional Chinese bodywork? In addition to acupuncture, I offer tui na (similar to massage) and other ancient Chinese therapies, including cupping, gua sha, moxa, and more. If you are looking for a holistic wellness consultant and coach, my services can entail short or longer term programs. You are your own best investment, and when you take charge of your wellbeing you invest in yourself now and for the benefit of your future.
Note: Material on this web site is not intended to replace your treatment or care provided by an MD. It is for educational/entertainment purposes only. A TCM practitioner in Texas identifies syndrome patterns but does not diagnose illness. Always consult your primary care doctor for health concerns.