Hypermobility can mean more than just being ‘bendy’, or ‘flexible’. This is hypermobility as a characteristic and then there’s hypermobility as a symptom for connective tissue disorders (Simmonds, 2022). Hypermobility Sydnromes including Hypermobility Spectum Disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS), are conditions which present with injury, pain and other symptoms which can affect multiple body functions and systems. The term hypermobility basically means being able to move a joint beyond a range of movement (ROM). There is also hypermobility that can exist without any other symptoms other than excessive joint ROM.
You may know someone who’s double jointed and flexible, being able to get into the splits or acrobatic position. For some people, this is totally normal and it doesn’t trouble them. They can deal with their bendiness and function very well. This is known as asymptomatic hypermobility. People can thrive with this, using their ‘talents’ to help them excel in various sports and activities. Some top sports professionals are hypermobile, such as Micheal Phelps. This however differs quite a considerable amount from the symptomatic hypermobility which can affect individuals lives on various degrees. Understanding the person and how the condition affects that individual is paramount in getting them the right onward referrals, treatment and management.
Not a great deal of time is spent teaching about hypermobility and Ehlers-Danlos syndrome in education and training. You might have come across the term hypermobility somewhere. Maybe you’ve heard about the Beighton scoring system? But other than that, it is not well known and there is a lack of awareness. Ehlers-Danlos syndrome is a multi system disorder which can affect skin, gastrointestinal tract, cardiovascular system and joints, with a prevalence of 1 in 5000 people. There is a cross over in symptoms with hypermobility as it can also present with fatigue and joint problems such as dislocations, recurrent injury, pain and joint instability. In hypermobility, the ligaments are lax, meaning they are more easily overstretched and this can result in higher risk of injury. Hypermobility has a higher prevalence of 1 per 600/900 people.
Just like any condition that affects, joints, muscle or tissues, movement is an important factor that needs to be addressed correctly. Being aware of how the condition affects individuals is important for working out the best management and therapy. Physiotherapy is often a key component in helping the patient manage to condition, involving education, manual therapy and exercise prescription. Yet if you were to come across a patient with this condition, would you know how to approach the problem and what to do?
Every patient is different. In hypermobility, this is ever more the case. Patients pain score, symptoms, joint ranges and level of conditioning can vary significantly. A common problems seen among patients is that the physiotherapist is not aware of the condition. They will prescribe exercises or advice which is not helpful or individualised and can actually make their pain worse. This can be by giving exercises that are too hard, giving them too much too soon and inappropriate techniques. If the condition is beyond the physiotherapists training, a referral to a specialist practitioner will be the best option for the patient. Another issue is that the patient comes in with stiffness, pain and ROM issues in multiple joints. Patients are often referred for one joint or area rather than looking at whole person and working on a multi- joint approach (Palmer et al, 2014)
Working on an individualised treatment plan is essential. Being able to understand the person as a whole will help build a partnership. Some people have reported having to wait 10 years to get the correct diagnosis as symptoms are often looked in isolation rather than collectively. They may be quite frustrated and unsure about how to deal with the condition. The prognosis can also be quite uncertain. To understand the condition, symptoms, regions of pain and how it affects their daily activities and functioning need to be taken into account.
How can physiotherapy help hypermobility?
Exercise is essential for joint instability. However overdoing it or incorrect exercises can result in injury. In hypermobility as the joint can exceed ranges of movement beyond normal there is a risk of dislocation or subluxations. Here are some important things that need to be identified when prescribing exercises:
- what joints and muscles are involved
- Joint ranges of movement
- how the person feels during movement, any symptoms and how they are affected (limitations)
Identifying safe ways to move will help patient feel confident and gain strength, helping to reduce injury risk.
Patients often are deconditioned. Either the long referral wait or fear of moving due to pain or injury. Education is a crucial component when working with these patients. There is a cycle of exercise , pain and fatigue. Exercise can actually help improve fatigue and manage pain better. But when an individual is feeling this way, they stop exercising which can actually in turn make the symptoms worse. Reassurance and encouragement that exercise is beneficial and in the long term can help. Exercise can reduce the severity and frequency of flare ups and symptom intensity.
Poor proprioception is also very common problem. This can cause injury and balance issues which can make going out and moving difficult. Either due to injury or stability problems (Engelbert et al, 2017). Patients may also say they are clumsy, tripping or bumping into things. In hypermobility /EDS, the ligaments will stretch before the tight muscle. Because poor proprioception is a key problem in many individuals, (being a lack of awareness of limb orientation and movements) patients will not be able to distinguish how to stretch or move safely and correctly.
Slow gradual movements can help to build that awareness and sensitivity to movement. Working through each movement or exercise in detail with the patient, and breaking it down can help them to be conscious of the movement. Working in front of a mirror, gym balls, bands and wobble boards can all help to increase proprioception. It can be helpful to place a hand on the correct muscle group for the patient to know how it feels when the correct muscle is being activating. This can create awareness of the movement and body position by locating and feeling the muscles during the exercise.
Exercise and management advice
As with any chronic illness, giving the patient strategies to manage their health is really important. As a physiotherapist or healthcare professional, the patients physical and emotional needs to be consider individually. Each patient will come with a different set of symptoms and goals so working together on what is most important for them is really important. Having a good relationship with the patient is crucial. This helps build a successful management plan that the patient responds to and perseveres with.
Part of the education should involve advice on rest and recovery. In hypermobility, muscle strength and endurance can be reduced (Rombaut et al, 2012) so this may present as weakness and easy fatiguability. Ensuring sufficient rest is really important to avoid overuse and injury. Understanding pain, what’s normal and what’s not when exercising is also an important issues to address. Pain after exercise is normal. Pain during exercise, in the joints is not . Communicating this to the patient is necessary.
Modifying the exercise with a gradual progression of ‘slow and low’ is the often best way to go with most hypermobile/EDs patients. This allows for rest and recovery and to avoid injury, as well as allowing the body to get accustomed to the exercise.
There are conditions that can overlap with hypermobility/Eds which as a practitioner you will need to be aware of. Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that can complicate exercise interventions. Some key features of POTS involve orthostatic and exercise intolerance, with symptoms of tachycardia, fatigue, dizziness, syncope (fainting) and shortness of breath (PoTsUK). This can result in patients being deconditioned and may have physical limitations due to these symptoms. Understanding how to condition affects that individual is really important in being able to work on specialised treatment for them. Both EDS and POTS are complex conditions which need careful and strategic management with realistic, functional goals.
When formulating an exercise program with POTS, having knowledge of their physical status is key because many patient will need exercises which are recumbent or sitting and that limit position changes to standing. This is due to the orthostatic intolerance and poor venous return). Cardiovascular aerobic exercises such as rowing or swimming are really beneficial and good to start with and for strength core strengthening is useful. Advice on salt intake, hydration and compression garments should be given to help manage their symptoms.
Sometimes, it’s important to have MDT involvement to understand how it impacts the patient and having adaptations in place. Occupational therapists can help with pacing and joint protection. Psychologists can help with anxiety and pharmacists can help with medication and prescription. Other referrals may also include a pain clinic.
With hypermobility, EDS and POTS the patient may use mobility aids. There is a social stigma that the use of mobility aids is only for those who are either elderly or with an obvious physical impairment. But because these conditions are ‘invisible’ there use is often seen as unwarranted. Taking all the patients needs, impairments, ability and symptoms are really important in building that holistic patient centred approach and relationship. As a therapist, the willingness to learn with the patient is really important. The patient is always learning about their body and looking to build that relationship with themselves too.
About the Author:
I’m Katie and 24 yrs and, a 2nd year undergraduate physiotherapy student at University of Brighton. I am currently doing a diverse placement with Jo Southall. This is my second degree, the first being Sports and Exercise science. Following an ankle fracture and the rehabilitation involved, I become fascinated about what physiotherapist do and the detail involvement. I have always enjoyed exercise and learning about the mechanisms of the body but wanted to take this knowledge further and apply it to helping people. I am thoroughly enjoying my degree and the scope I have to learn and discover new things and ways to helping
Resources /sources of information
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S., Scheper, M.C., Russek, L. and Simmonds, J.V., 2017, March. The evidence‐based rationale for
physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility
syndrome/hypermobile Ehlers Danlos syndrome. In American Journal of Medical Genetics Part C:
Seminars in Medical Genetics (Vol. 175, No. 1, pp. 158-167). (Accessed 15 March 2022)
Simmonds, J.V., Herbland, A., Hakim, A., Ninis, N., Lever, W., Aziz, Q. and Cairns, M., 2019.
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