Ehlers-Danlos Syndrome Hypermobility

Working as Exercise Physiologist’s we come across a variety of different conditions. Funnily enough, exercise as a therapy has been beneficial for all of them, but we’re already getting off topic. Anecdotally speaking, joint hypermobility is more common than you might think. One of these ailments is Ehlers-Danlos Syndrome (EDS). EDS is a condition that affects all joints of the body, resulting in hypermobility and excessive range of motion. Essentially, it is a disorder of the connective tissue resulting in laxity. This isn’t the only symptom however, laxity can be accompanied with pain, fatigue, psychological factors (i.e. depression and anxiety), issues with the autonomic nervous system and motor control.  According to the Marfan Foundation, it is estimated that 1 in 5000 – 20 000 people have the condition, with joints and skin most commonly affected. Joints such as the shoulder, knee and jaw typically present with hypermobility causing frequent dislocations and as such, chronic pain. The cause of EDS is not exactly known; however, it is a genetic condition and if a parent is inflicted with the genetic mutation, there is a 50 percent chance of passing it on with each pregnancy. Treatment of EDS is generally a combination of exercise therapy, movement aids and pain medication.

For those with EDS and hypermobility, exercise can present a variety of challenges. In many cases, overstretching and high-intensity activity can certainly exacerbate symptoms.  So, whilst people may want to exercise, a psychological association between pain and physical activity can occasionally be established, acting as a barrier toward physical activity. The art of exercise rehabilitation for hypermobility is in the subtlety of movement. By focusing on deep tissue and stabilising musculature, a practitioner can reduce the risk of injury and create a healthy basis to progress exercise tolerance and complexity. The Ehlers-Danlos Society suggests that “exercise is the cornerstone of treatment and there are several high-quality research trials in both children and adults which provides evidence for this.” Most of the studies to date have focused on knee strengthening, proprioception, and balance, however there is further evidence to suggest that core stability and endurance exercises can provide pain relief and increased function. Furthermore, the psychosocial aspect of exercise has been effective in increasing self-esteem in children and adolescence, by participating in exercises through their entire range of motion (including the hypermobile range). It is believed that a combination of exercise and cognitive education, i.e how one thinks about pain, is best practice to reduce pain and disability. Though there is little evidence to support, manual therapies such as massage and taping may aid with symptoms. Furthermore, hydrotherapy can be implemented for those with low exercise tolerance. Consequently, exercise, whilst effective, must be graded and applied by tolerance to avoid a flare-up of symptoms and further deconditioning.

As with many chronic conditions, more research is required to determine the most effective approach of treatment. Education for both general practitioners and allied health professionals is vital to effective treatment plans and reducing the exacerbations of flare-ups during the rehabilitation process. Furthermore, an individual with Ehlers-Danlos Syndrome is encouraged to maintain exercise as part of their long-term lifestyle. Consequently, sound and practicable education around physical activity must be conveyed for successful and sustainable outcomes.

Absolute Balance aims to make exercise the answer for all health conditions. So if you are looking for further information, we recommend you speak to your doctor and an Accredited Exercise Physiologist for a tailored programme.

Ed Daccache, B.Ex.SpSc, Grad.Dip.Ex.Sc (AEP, AES) (ESSAM)
Accredited Exercise Physiologist

References:

The Marfan Foundation. Ehlers-Danlos Syndrome Hypermobility Type. Retrieved from

https://www.marfan.org › download › file › fid › EDS Hypermobility Type

 

Russek, L., Simmons, J. (2017).  The Evidence Based Rationale for Physical Therapy Treatments of Children, Adolescence and Adults Diagnosed with Joint Hypermobility Syndrome/ Hypermobile Ehlers-Danlos Syndrome (For Non-Experts). Ehlers-Danlos Society. Retreievd from https://www.ehlers-danlos.com/2017-eds-classification-non-experts/evidence-based-rationale-physical-therapy-treatment/