Exercising when you have a long-term health condition and/or disability can be really challenging. In general, anyone experiencing this situation should be encouraged to exercise and look to include a range of different activities such as strengthening, mobility and aerobic work.
In many cases, exercise and physiotherapy combined will be essential to the successful management of a condition and will also support mental health. Here we focus on EDS and its specific requirements and constraints that need to be considered.
What is Ehlers Danlos?
Ehlers-Danlos is a group of syndromes that affect the connective tissues within the body — primarily the skin, joints and blood vessel walls. Symptoms are variable amongst different people. Some have mild symptoms whilst others can find the condition very disabling.
How does it affect people with the condition?
Typical symptoms experienced are:
joint hypermobility
loose, unstable joints that dislocate easily
joint pain and clicking joints
extreme tiredness (fatigue)
skin that bruises easily
digestive problems, such as heartburn and constipation
dizziness and an increased heart rate after standing up
problems with internal organs, such as mitral valve problems or organ prolapse
problems with bladder control (urinary incontinence)
What special factors need to be considered when exercising?
Talking to a person's physiotherapist is a crucial step to ensuring that the exercise programme devised is suitable for the individual. Every patient is unique and needs to be treated that way. Patients may require special support or braces on certain joints to ensure they are well supported and the risk of injury is reduced.
Jason Parry, Extended Scope Physiotherapist / Clinical Specialist Physiotherapist, University College London Hospital and The Hypermobility Unit, Hospital of St John and St Elizabeth, London gives great advice and support for those with or working with people with EDS in this article: Exercise and movement for adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders, which looks at the key types of exercise to include in a programme which is:
Aerobic exercise
Strength
Flexibility
Proprioception/balance
What types of exercise are best for those with EDS?
Exercise that has a low impact on the joints is great for those with EDS. Swimming and exercise in water suit this requirement really well as the body is supported by the water.
Building a strong core is a way for those with EDS to gain some control over their bodies is essential. Pilates and Tai Chi are excellent examples of activities that can be accessed to build this element of a fitness programme. Yoga can also be effective but care needs to be taken to ensure joints are not over-stretched in certain poses. It can help with muscle stiffness and muscle spasms which may also be experienced — often caused by poor posture or sitting or laying for long periods of time due to fatigue.
Mobilates provides a safe and supportive way for those with EDS to begin exercising safely using the fundamentals of Pilates to help with movement, core strength and stability of joints. They work in partnership with the Ehlers-Danlos Foundation to provide free access to monthly online sessions. These can also be accessed on the YouTube page.
What types of exercise are best to avoid?
Activities such as running can cause additional strain on the joints and put participants at risk of hyperextension and possible sub-luxing and dislocating joints. Weightlifting can also cause extra pressure on the joints. However, they can also be accessed with adaptations and by ensuring you have supportive trainers, orthotics, braces and workouts on suitable surfaces.
What does a typical exercise programme look like for someone with EDS?
An exercise programme may combine a variety of different forms of activity. They include:
Functional movement work —through the use of a cross trainer or exercise bike to help with movement patterns for basic functions.
Core strength work — pilates with or without bands and light weights or the use of a Swiss ball
Strengthening — specific exercises from a physiotherapist to help tighten muscles around vulnerable joints. Usually with the use of resistance bands, light weights or resistance machines.
Aerobic exercise — swimming will give a full body workout but without adding impact to joints.
This programme can be done at home in a gym or in combination and will vary from person to person. The above programme was devised by an EDS patient and their physiotherapist. It provides variety, an all-body workout and a clear structure.
What can coaches and instructors do to support those with EDS?
Talk to participants and discuss with them what they want to achieve by exercising
Ensure joints are stable enough to take on the demands of the exercise the patient is participating in
Establish realistic goals and targets
Be prepared to adjust training sessions according to need
Understand that fatigue and pain can be a large part of EDS and will need to be monitored
Trial and error may be required to establish the best combination of the different types of exercise
Support to help get those with Long-term health conditions to exercise in Essex
The Essex All Together programme run by Active Essex is focused on supporting those with long-term health conditions and disabilities to access sports and exercise opportunities within the Essex area.
This can happen in a variety of ways including:
Inspiration from the team of Essex All Together Disability Sports Ambassadors team
Activity connector volunteers
Access to free online exercise classes run by qualified and approved exercise professionals
Sport confidence delivery programme
Activity finder
Work with the We Are Undefeatables Campaign run by Sport England
Resources and links
Ehlers Danlos - EDS and Exercise: https://ehlersdanlosnews.com/eds-and-exercise/
Mobilates: https://www.mobilates.com/
Active Essex - Essex All Together Programme: https://www.activeessex.org/find-your-active/essex-all-together/
Activity connectors — find your active with me: https://www.activeessex.org/find-your-active/with-me/
Active Essex - Essex All Together Ambassadors: https://www.activeessex.org/find-your-active/essex-all-together/ambassadors/
Active Essex — Find your active: https://www.activeessex.org/find-your-active/
Active Essex - Sport for Confidence: https://www.activeessex.org/find-your-active/workout-channel/sport-for-confidence/
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