The Role of Strength Training in Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders that can affect the skin, joints and other tissues throughout the body. One of the most common forms, hypermobile Ehlers-Danlos syndrome (hEDS), is associated with generalised joint hypermobility, joint instability, pain and fatigue.

For people with EDS or significant joint hypermobility, exercise can sometimes seem counterintuitive. If your joints already move further than average, should you really be doing more movement and exercise?

In many cases, progressive strength training can be an important part of managing symptoms and improving physical function.

Why can strength be important with EDS?

Ligaments and other connective tissues help provide passive stability around joints. In people with hypermobility, these structures may allow greater movement than normal.

This means the muscles surrounding a joint may have to work harder to provide stability and control.

For example, someone with hypermobility of the knee may rely heavily on the quadriceps, hamstrings and hip muscles to control movement during walking, running, squatting or climbing stairs.

Over time, this increased muscular demand may contribute to:

• Muscle fatigue

• Aching and soreness

• Reduced exercise tolerance

• Feelings of instability

• Difficulty controlling certain movements

• Reduced confidence in using the affected joint

Strength training can help improve the capacity of these muscles to tolerate and control load.

Strength is not just about lifting heavy weights

When people hear "strength training", they may imagine lifting heavy barbells in a gym.

That isn't necessarily what is required.

Strength training can include bodyweight exercises, resistance bands, machines, free weights or carefully selected functional exercises.

The important factor is progressive loading.

Exercises can initially be very simple. For example, someone experiencing knee symptoms might begin with a controlled sit-to-stand exercise before progressing to squats, step-ups and eventually more demanding resistance exercises.

The appropriate starting point depends on the individual's symptoms, strength, joint stability and exercise history.

What about stretching?

People with EDS and hypermobility are often naturally very flexible. However, being flexible doesn't necessarily mean that more flexibility is beneficial.

If a joint already moves through a large range, repeatedly pushing it towards its end range may not be the most useful way to improve function.

For some people, the focus may be better placed on strength, control and confidence through an appropriate range of movement.

This doesn't mean stretching is always inappropriate. Someone with EDS can still have areas of muscular tightness or restricted movement, and mobility exercises may sometimes be useful.

The key is that treatment should be based on the individual's needs rather than assuming that hypermobility automatically requires more stretching.

Can strength training reduce pain?

Pain associated with EDS and hypermobility is complex and can have several contributing factors.

Improving strength doesn't necessarily "fix" the connective tissue disorder, but it may improve the body's ability to tolerate physical loads.

A stronger and better-conditioned musculoskeletal system can make everyday activities and exercise more manageable.

Exercise may also provide benefits beyond muscle strength, including improved physical capacity, confidence with movement and participation in normal activities.

However, exercise programmes need to be introduced appropriately. Doing too much too quickly can result in increased symptoms, particularly in someone who is already deconditioned or experiencing significant fatigue.

Start where you are

There is no single strength-training programme that is appropriate for everyone with EDS.

Someone who exercises regularly may be able to start with conventional resistance training. Someone who has significant pain, fatigue or joint instability may need a much more gradual approach.

A sensible programme might progress through stages such as:

1. Establish movement control

Learn how to perform exercises comfortably and with good control.

2. Build tolerance

Gradually increase the number of repetitions or duration of an exercise.

3. Introduce resistance

Add resistance bands, weights or machines where appropriate.

4. Progress the load

Increase resistance or exercise difficulty gradually as capacity improves.

5. Transfer strength into everyday activities

Progress towards activities that are meaningful to the individual, whether that is running, cycling, lifting, gardening, playing sport or simply being able to manage daily activities with less discomfort.

What about joint instability?

Joint instability can be one of the most frustrating symptoms associated with hypermobility.

Strength training can help develop the muscular control required to support and stabilise joints during movement. Proprioceptive and balance exercises may also be incorporated where appropriate.

The goal isn't necessarily to prevent every movement beyond a particular range. Instead, rehabilitation can focus on helping someone develop better control and confidence across the range of movement they use.

Is exercise safe with EDS?

For most people with hEDS or hypermobility, appropriately prescribed physical activity is an important part of management. However, EDS encompasses several different subtypes, and people can have very different symptoms and medical considerations.

Anyone with a diagnosed connective tissue disorder should have an exercise programme tailored to their individual circumstances.

Particular care may also be required in people with complications affecting areas beyond the musculoskeletal system.

A gradual approach is generally more appropriate than suddenly starting an intensive training programme.

The aim isn't to make you less flexible

One of the most important principles is that rehabilitation isn't necessarily about trying to eliminate hypermobility.

Instead, the goal may be to help you become stronger, more resilient and more confident in using your body.

For someone with EDS, success might mean being able to walk further, return to running, lift weights, play with their children or complete everyday activities without experiencing a significant flare-up afterwards.

Strength training is therefore not about changing the underlying connective tissue disorder. It is about improving what the body can do.

How can an osteopath help?

An osteopath can assess how hypermobility may be contributing to an individual's musculoskeletal symptoms and help identify factors such as strength deficits, movement control, training errors or areas of muscular overload.

Treatment may include advice, exercise rehabilitation and, where appropriate, hands-on techniques to help manage symptoms.

Importantly, the aim should be to help people become more confident and independent in managing their condition rather than relying solely on passive treatment.

For someone with EDS or significant hypermobility, a long-term programme combining education, appropriate exercise, strength training and self-management may be more useful than repeatedly treating individual episodes of pain.