Introduction

Ehlers-Danlos syndrome (EDS) is a collection of inherited conditions that mainly impact the connective tissues, specifically the walls of blood vessels, joints, and skin. Connective tissues are made of cells, protein fibres and a ground substance. The main function of these connective tissues, with the help of their delicate components, is to provide support, structure, and elasticity to the body. Exercise is an absolute must to stay healthy, but it requires extra care for those with EDS. With the right training, movement can shift from being a source of discomfort to one of stability and strength.¹ This article examines evidence-based, safe physical activity strategies for individuals with EDS.

Overview

EDS patients typically have stretchy, delicate skin and excessively flexible joints. Because the skin is frequently not strong enough to hold stitches, this could become an issue if you have a wound that needs them. People with EDS often experience joint hypermobility, fragile skin, and recurrent musculoskeletal problems. There are 13 different types of EDS categorised based on the area it affects and the symptoms it causes. Ehlers-Danlos syndrome is thought to affect 1 in 5,000 people, according to experts.²

Although these symptoms may make it difficult to carry out daily tasks, regular, well-planned exercise is crucial for enhancing long-term health. However, exercise recommendations for people with EDS must be customised, planned, and closely monitored by medical professionals due to the high risk of injury, as dislocation and joint pains are quite frequent among such individuals.^1,2

Why exercise matters in EDS

Patients suffering from EDS must consider the importance of exercise beyond its benefits for fitness. For them, it's the most essential part of managing their symptoms. EDS causes different symptoms in different areas of the body; hence, depending upon the area affected, the treatment must be personalised. The primary goal is to strengthen the muscles that support hypermobile joints, thereby reducing pain and increasing stability.^1,2

Regular physical activity also prevents deconditioning, which is linked to fatigue and cardiovascular problems in people with connective tissue disorders. Additionally, proprioception (the body's awareness of joint position) can be improved by exercise, which can help patients prevent unintentional injuries. Crucially, physical therapy improves mobility, independence, and general quality of life for individuals with EDS when done under professional supervision. It is also well known that exercise can help with stress and anxiety while boosting mood and promoting a positive sense of self.^1,3

Exercise benefits

Structured rehabilitation programs greatly enhance the quality of life, pain management, and functional outcomes for people with generalised hypermobility spectrum disorder (G-HSD) or hypermobile EDS (hEDS). Although further investigation is required, the evidence clearly shows that exercise is an essential part of care.³

Physical activities that are safe for patients with EDS

Low-impact exercises reduce stress on unstable joints; they are best suited for individuals with EDS. Gentle exercise can help you feel less tired by improving your circulation and overall health. Next, we will analyse the choices to be considered.^1,2 

Aerobic activities

 Walking, cycling, and swimming are excellent examples of aerobic exercises that enhance cardiovascular fitness without placing undue strain on the joints. It is essential to maintain proper pacing and posture. Swimming and hydrotherapy have a great impact on improving strength, building muscles for flexibility, and improving cardiovascular health.^1,2 

Strength training

Strength training is the most important exercise when it comes to the management of EDS, as it helps build muscle strength, which is most essential for stabilising those hypermobile joints. For targeted stimulation of particular muscle groups, it is recommended to use bodyweight exercises, resistance bands, or light weights. Paying attention to controlled motions and maintaining good form is the key to avoiding any kind of strain. Wall push-ups, glute bridges, and mini squats are some of the most effective and easy strength training exercises.^1,2 

Core stabilisation

Pilates, yoga, or targeted exercises improve posture and spinal stability by targeting core strength, flexibility, and balance. For novice beginners, it is always recommended to enrol in good classes to avoid any kind of injury, as overstretching can have implications in case of hypermobile EDS.^1,2

Exercises to serve balance and coordination 

A few proprioceptive exercises that improve balance, joint stability and awareness are using a balancing board or standing on one leg. These exercises should be introduced gradually and under expert supervision.^1,2 

Flexibility with moderation 

Excessive stretching should be avoided, but mild stretching can help preserve mobility.^1,2

Professional guidance and physiotherapy

It is an important first step for patients suffering from EDS to work with a physiotherapist who is familiar with EDS guidelines. Physical therapists are trained to create customised programs that emphasise gradual strengthening, proprioception training, and joint protection. They also assist patients in overcoming kinesiophobia, which is just the fear of movement, by supporting specific and appropriately customised activities in a nurturing atmosphere. Overall supervision, guidance, support and encouragement from a professional therapist not only nullifies the risk of overexertion but also improves patients' confidence level.^4,5

Occupational therapists can be extremely helpful in helping EDS patients adjust to everyday activities in addition to physiotherapy. To make tasks around the house and at work safer and less exerting on the body, occupational therapists may suggest ergonomic equipment, joint supports, and lifestyle changes. Joint strain during daily tasks can be lessened, for instance, by employing energy-conservation techniques, supportive seating, or adaptive pens.⁶

Additionally, as the patient's condition changes, ongoing monitoring with recurring evaluations guarantees that the exercise regimen will continue to be beneficial. This multidisciplinary approach, which includes occupational therapists, physiotherapists, and occasionally rheumatologists or pain specialists, offers a comprehensive support system that helps patients continue their activities without experiencing any difficulties. The GoodHope Exercise and Rehabilitation (GEAR) program is an example of how structured, multidisciplinary care can give patients with EDS more power.^1,3,6,7 

Practical tips for patients

Patients with EDS can maximise exercise benefits by following these strategies:^1,3,6

• Start slow with low-intensity workouts and progress gradually so the body adapts 
• Prioritise consistency over intensity
• Consider doing some pre- and post-gentle stretches to reduce the soreness of muscles
  Using supportive gear, such as orthotics, braces, compression garments, or kinesiology tape when prescribed, can help provide additional support to combat any risk of injury during exercise
• Avoid high-impact sports, e.g., running, contact sports that stress joints
• Listen to your body and stop doing any activity that causes pain or discomfort
• Drink plenty of water before, during, and after exercise, as dehydration can make joint pain and fatigue worse
• Get training from a professional fitness trainer or physiotherapist who knows about EDS, and helps with appropriate fitness regime plans

Such approaches empower patients to remain active while minimising injury risks.^1,3,6

FAQs

How long can a person with EDS expect to live?

EDS doesn't directly affect your life expectancy. Having said that, EDS can affect your blood vessels (vascular Ehlers-Danlos syndrome), which can increase the risk of stroke or other vascular issues. With a proper combination of treatment and lifestyle changes, even patients with vascular Ehlers-Danlos syndrome can live a healthy and safe life.

What is the cause of EDS?

A genetic mutation brings on EDS. Genetic mutations occur when your cells divide and create duplicates of themselves, altering the sequence of your DNA. You may have symptoms of a genetic condition if a portion of your DNA sequence is damaged, missing, or in the wrong location.

Is it possible to avoid EDS?

No, you cannot prevent EDS, as it's purely the work of genetic mutations. However, if one is concerned about passing on the syndrome to the children, then they can seek genetic counselling from a healthcare provider.

When should I see my healthcare provider?

If you see any changes in your body, such as loose skin, weak joints or unusual bruising and bleeding, then seek medical attention immediately.

Summary

Exercise is both a challenge and an opportunity for people with EDS. When planned well, exercise builds up the muscles that support the body, makes joints more stable, reduces fatigue, and improves overall quality of life. The GoodHope Exercise and Rehabilitation (GEAR) program is an example of how structured, multidisciplinary care can give patients with EDS more power. With more research, doctors and patients can improve activity guidelines and make sure that people can safely and sustainably exercise for their long-term health. After all, exercise is not a cure, but it's the most effective method to live with EDS.