Hypermobility & Eating Disorders: An Unexpected Overlap
From Guest Contributor, Libby Hinsley
Therapists who treat people with eating disorders (ED) may not routinely look for signs of joint hypermobility. However, there is growing evidence showing a correlation between hypermobility and eating disorders, as many common symptoms of hypermobility syndromes can mimic or overlap with those of ED.
https://eatingdisordersreview.com/joint-hypermobility/
Greater awareness about hypermobility syndromes may help providers better understand and treat their ED patients.
Hypermobility describes the ability of a joint to move more than is considered normal or typical. People who have 5 or more such joints are considered to have generalized hypermobility. It’s thought to affect around 20% of the population.
The most common quick screens used to identify generalized hypermobility include the Beighton Scale and the 5-part questionnaire. The Beighton Scale assesses 5 maneuvers and gives one point for each joint assessed, for a total of nine possible points. People who score at least a 4 (or 5, depending on who you ask) are considered hypermobile. This screening tool isn’t perfect and certainly does not always identify someone with hypermobility. If you suspect someone may have joint hypermobility, don’t be fooled by a low score on the Beighton Scale.
The 5-part questionnaire (5PQ) can also be useful in helping to identify those with hypermobility. If a patient answers 2 or more affirmatively, that is considered indicative of generalized joint hypermobility. Both assessment tools can be found here: https://www.ehlers-danlos.com/assessing-joint-hypermobility/
While several factors can contribute to joint hypermobility, a genetic difference in the collagen that makes up the connective tissue in the body is typically the underlying issue when hypermobility becomes symptomatic. Collagen is the most common structural protein in the body and is prevalent in tissues. This includes tendons, ligaments, joint capsules, and fascia. It’s also a primary component of blood vessels and the GI tract. Genetic differences in collagen synthesis and/or function lead to increased laxity of connective tissues. Tissues with more laxity don’t provide the support and stability that standard issue connective tissue provides. This laxity allows for more range of motion to occur at joints, among many other ramifications throughout the body.
Hypermobility syndromes
Hypermobility isn’t always symptomatic. However, when it is, it is referred to as a hypermobility syndrome. The most common hypermobility syndromes include Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD). hEDS is the most common of 13 identified types of Ehlers-Danlos Syndrome, which is a group of inherited connective tissue disorders. The other 12 types of EDS are rare or ultra-rare diseases that can be diagnosed via a blood test. hEDS accounts for 90% of all cases of EDS and is not rare. Unfortunately, there is not currently a blood marker identified for hEDS, so it is diagnosed via a set of clinical criteria that can be found here:
https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
HSD is symptomatic hypermobility that does not meet the diagnostic criteria for hEDS or any other connective tissue disorder. Clinically, hEDS and HSD present as the same condition and are treated in the same way. One is not more severe than the other.
The prevalence of these conditions isn’t well understood because they are poorly diagnosed. Most patients wait well over a decade before receiving an accurate diagnosis. However, recent research shows a combined diagnosed prevalence of HSD/hEDS to be 1 in 500.
https://bmjopen.bmj.com/content/9/11/e031365
Given that the diagnosis rate of these conditions is expected to be very low, we can reasonably expect that the actual prevalence of HSD/hEDS is far greater. Despite the genetic nature of these conditions, their prevalence is far higher among AFAB people, and symptoms often arise or worsen during puberty and/or perinatal time. This is thought to be due to hormonal influence on the expression of these conditions.
Common symptoms of hypermobility syndromes
Every person with HSD/hEDS presents with a unique cluster of symptoms, which is part of what makes it difficult to identify these conditions. Symptoms may affect any system of the body. Some of the most common complaints include:
widespread joint and myofascial pain
joint instability
headaches
anxiety
postural orthostatic tachycardia syndrome (POTS)
mast cell activation syndrome (MCAS)
sensory impairments (decreased proprioceptive accuracy and increased interoceptive sensitivity)
neurodivergence
In addition to a w wide array of functional GI disorders, some of which can overlap with or mimic ED.
In particular, it’s not uncommon for adolescent and teenage girls with hypermobility to be diagnosed with restrictive eating disorders due to symptoms that may be caused by an underlying hypermobility syndrome that is unlikely to be diagnosed. Having an awareness of hypermobility syndromes can help clinicians identify those patients showing signs of HSD/hEDS and funnel them toward appropriate diagnosis and treatment.
Research shows that people with HSD/hEDS are at higher risk for a wide variety of functional GI disorders such as dysmotility, dysbiosis, IBS, and functional dyspepsia. The primary underlying issue in the hypermobile body is a hypmotile gut, meaning the gut is slow to move food through the system. Patients with hypomotility describe early fullness or discomfort after eating, and poor appetite. Autonomic dysfunction, specifically poor vagus nerve tone coupled with increased sympathetic arousal (both well documented in this population) is thought to contribute.
https://linkinghub.elsevier.com/retrieve/pii/S0022347614006441
https://www.tandfonline.com/doi/full/10.1080/07448481.2022.2037613
https://link.springer.com/article/10.1007/s40519-021-01146-z
People with hypermobility have been shown to have larger and more reactive amygdala, which contributes to increased sympathetic arousal. Low vagal tone makes it even more difficult to put the brakes on sympathetic arousal, and since gut peristalsis is governed by the vagus nerve, this also has direct impact on digestion.
https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2014.01162/full
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00427-X/fulltext
A variety of other factors can further exacerbate these challenges, including a 4-7 times higher prevalence of neurodivergent diagnoses, many of which include sensitivities that make eating difficult.
https://www.medrxiv.org/content/10.1101/2020.09.14.20194118v1
https://jnnp.bmj.com/content/85/8/e3.40
Furthermore, the common comorbidities of POTS and MCAS each impact feeding and digestion in their own ways. Stomach pain, post-prandial discomfort, and malaise are common symptoms of POTS, while those with MCAS often end up with severely restrictive diets as they attempt to avoid foods that seem to set off their inflammatory response. All of these factors can significantly impact patients’ ability to take in adequate nutrition.
Among other impacts, this means they may not have the necessary fuel to participate in strength training and exercise, which is an important self-care component for people with hypermobility syndromes. Addressing the factors impacting feeding and nutrition in the hypermobile population is often a prerequisite for them making progress with their musculoskeletal concerns.
In terms of ED diagnoses, research has noted a fairly high correlation between hypermobility and anorexia nervosa (AN), with up to 63% of AN patients displaying joint hypermobility. Up to 50% of AN patients have also been shown to have POTS.
https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.803614/full
https://jeatdisord.biomedcentral.com/articles/10.1186/2050-2974-1-S1-O45
While it’s not well understood why these correlations exist, some consider interoceptive sensitivity and the misinterpretation of interoceptive signals may be one of the links, in addition to the restrictive eating behaviors that accompany functional GI disorders.
https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2020.00281/full
Empowering Patients Through Comprehensive Care and Education for Hypermobility-Related Conditions
Advocating for appropriate medical evaluation of hypermobility, GI motility, POTS, and MCAS would be the first reasonable step if you suspect an ED patient may have some underlying hypermobility-related conditions that have not been diagnosed. Simple strategies such as compression garments and increased salt/electrolyte intake can often support those with POTS. For some, an over-the-counter antihistamine regimen or prescription mast-cell stabilizing medications can effectively control MCAS symptoms. There are also pharmaceutical as well as nutraceutical and/or herbal approaches to addressing poor gut motility that can be trialed with the help of a knowledgeable practitioner.
Unfortunately, it can be very difficult to find medical providers who are knowledgeable about these conditions, much less about how they impact feeding and digestion. The EDS Society website maintains a practitioner directory. However, there is a great need for providers to become more knowledgeable so they can better identify, diagnose, and treat these conditions.
Vagus nerve stimulation and other techniques to help with nervous system regulation can help patients learn to routinely tap the breaks on their sympathetic arousal and shift their nervous system state into a place more conducive to digestion. Patient education is also critical in helping patients connect the dots and make sense of their otherwise seemingly disconnected challenges. When patients with hypermobility understand that their bendy body has a unique structure, physiology, and nervous system, (but is still adaptable and resilient!), they often feel more empowered to implement self-care strategies that improve their quality of life.
About the Contributor
Libby Hinsley is a Doctor of Physical Therapy, personal trainer, and Yoga Therapist specializing in the treatment of people with hypermobility syndromes and chronic pain. She has taught yoga since 2005 and has trained yoga teachers for over a decade. Her book — Yoga for Bendy People: Optimizing the benefits of yoga for hypermobility — explores how people with joint hypermobility can avoid injury and instead, use the tools of yoga to support their thriving. As a person living with Hypermobile Ehlers-Danlos Syndrome, she is passionate about raising awareness about hypermobility syndromes.
IG @libbyhinsleypt
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