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8 points about Hypermobility – What’s new and how could Pilates help you or your client with hypermobility spectrum disorder?

Historically symptoms related to joint hypermobility were under recognized leaving people who were experiencing symptoms related to joint hypermobility in a position where little help was available. Due to recent research into this important area there has now been a resulting increased awareness of joint hypermobility within both a public and clinical setting. While this is an important advancement I have personally experienced an increase in patients who have been ‘diagnosed’ with joint hypermobility who often do not fully understand the spectrum of joint hypermobility and what implications this can or in some cases cannot have. In this blog I have written 8 key facts to explore recent updates within the area of hypermobility and investigate how to manage some of the associated conditions often experienced with joint hypermobility.

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  1. Joint hypermobility is the term universally accepted to define the capability that a joint or a group of joints have to move beyond normal limits. Hence, this is a descriptor rather than a diagnosis (Castori et al, 2017). Joint hypermobility is common in the general population and in many people, is of no medical consequence and does not give rise to any symptoms. Therefore, if hypermobility is present in one or more joints this does not automatically mean symptoms will be experienced.
  2. In a small percentage of people joint hypermobility can be associated with, but not limited to, pain, disturbed proprioception and a vulnerability to trauma (Castori et al, 2017). Symptoms can also be extra-articular including psychological distress, postural orthostatic tachycardia syndrome and bowel and bladder dysfunction. When hypermobile joints are associated with symptoms this was previously called Joint Hypermobility Syndrome (JHS)
  3. Following the 2017 International Consortium on Ehlers-Danlos Syndromes it was decided there was often confusion between JHS and the Hypermobile variant of Ehlers-Danlos Syndromes (hEDS) making it difficult to distinguish between the two. (Tinkle et al, 2009). For more information on Ehlers-Danlos syndrome please click here. It was decided that the two conditions are part of the same clinical spectrum ranging from non-symptomatic generalised joint hypermobility to the most disabled individuals fitting the new diagnostic criteria for hEDS (Tinkle et al, 2017). The new full diagnostic criteria can be found here. Those individuals with hypermobility-related problems that do not have hEDS or any other Heritable Disorder of Connective Tissue are now given the diagnosis of Hypermobility Spectrum Disorder (HSD).
  4. The Beighton score is currently the most commonly used tool to identify hypermobility with the 5-part questionnaire also being used to establish a history of hypermobility (Juul-Kristensen et al, 2017). However, these tools only identify joint hypermobility not the symptoms that can be experienced in relation to hypermobility and are not in themselves a diagnosis of HSD.
  5. As with most conditions while diagnosis can be important, especially to rule out other potential causes of joint hypermobility, the most important thing is knowing how to best help symptoms that can be associated with HSD or hEDS. Physiotherapy has been shown to be a successful conservative managment for HSD and hEDS with a focus on exercise and pain management (Castori et al, 2012).
  6. Due to the nature of joint hypermobility exercise choices need to be specific and appropriate for the individual. Therefore, a progressive graded approach to exercise underpinned by motor learning theory is a good method when working with population groups experiencing joint hypermobility (Englebert et al, 2017). Care must be taken to consider pain, fatigue and fear of injury to avoid the patient losing confidence in the treating clinician.
  7. Pilates with its focus on strength, control, endurance and proprioception is a great tool to help people experiencing symptoms associated with joint hypermobility commence a graduated exercise program. The APPI method of Pilates allows for a graded exercise program as all the exercises have been broken down considering pain, pathology and function. Ensuring exercises are appropriate for the client and performed correctly to achieve maximum benefit in a safe environment. An example of APPI exercises that can be used with a Hypermobile population can be found on the new Hypermobility DVD
  8. A study was completed on children with hypermobile knees and the results showed there was an increased effect on self-esteem in the children who performed knee exercises into a hypermobile range of movement (Pacey et al, 2013). This shows the importance of working to improve control and strength all the way through available range of movement and not limiting movement or strengthening to what is considered a ‘normal’ range of movement. Pilates movements can be utliised to work in to available range of movement safely and with control.

In summary hypermobility alone does not equate to symptoms, however in the presence of joint hypermobility and symptoms a suitably qualified healthcare practitioner can diagnose HSD or hEDS. Management of hypermobility should be specific, graduated and consider pain, fatigue and individual’s own needs. Pilates can be a valuable tool in the management of this population group. I will leave you with a quote from the man himself, Joseph Pilates, who was always ahead of his time “A few well defined movements, properly performed in a balanced sequence, are worth hours of doing sloppy calisthenics or forced contortion”. For more information on APPI’s CPD day for hypermobility please click here

Castori M, Morlino S, Celletti C, Celli M, Morrone A, Colombi M, Camerota F and Grammtico P (2012). Management of Pain and Fatigue in The Joint Hypermobility Syndrome (a.k.a. Ehlers–Danlos Syndrome, Hypermobility Type): Principles and Proposal for a Multidisciplinary Approach. Am J Med Genet A 58A(8):2055-70. Castori M, Tinkle B, Levy H, Grahame R, Malfait F and Hakim A (2017) A Framework for the Classification of Joint Hypermobility and Related Conditions. American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 175C:148–157.

Engelbert R H H, Juul-Kristensen B, Pacey V, De Wandele I, Smeenk S, Woianarosky N, Sabo S, Scheper M C, Russek L and Simmonds J V (2017) The Evidence-Based Rationale for Physical Therapy Treatment of Children, Adolescents, And Adults Diagnosed with Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome. American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 175C:158–167

Juul-Kristensen B, Schmedling K, Rombaut L, Lund H, Engelbert RH (2017) Measurement properties of clinical assessment methods for classifying generalized joint hypermobility—A systematic review. American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 175C

Pacey V, Tofts L, Adams RD, Munns CF, Nicholson LL. 2013. Exercise in children with joint hypermobility syndrome and knee pain: A randomised controlled trial comparing exercise into hypermobile versus neutral knee extension. Pediatr Rheumatol Online J11:30.

Tinkle BT, Bird HA, Grahame R, Lavallee M, Levy HP, Sillence D (2009) The lack of clinical distinction between the hypermobility type of Ehlers-Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome). American Journal of Medical Genetics Part A 149A:2368–2370.

Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz H, Levy H. 2017. Hypermobile Ehlers-Danlos syndrome (a.k. a. Ehlers-Danlos syndrome type III and Ehlers- Danlos syndrome hypermobility type): Clinical description, and natural history. American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 175C

http://hypermobility.org/professionals-section/hypermobility-disorders-an-update-for-clinicians/