Hypermobility Syndrome

This week Imogen has been diagnosed with hypermobility syndrome.

Joint hypermobility means some or all of a person's joints have an unusually large range of movement.

People with hypermobility are particularly supple and able to move their limbs into positions others find impossible.

Many people with hypermobile joints do not have any problems or need treatment. However, joint hypermobility can sometimes cause unpleasant symptoms, such as:

• joint pain
• back pain
• dislocated joints – when the joint comes out if its correct position 
• soft tissue injuries, such as tenosynovitis(inflammation of the protective sheath around a tendon)

If hypermobility causes these types of symptoms it is often called joint hypermobility syndrome. Read more about thesymptoms of joint hypermobility.

Living with joint hypermobility syndrome

Joint hypermobility syndrome can be very difficult to live with because it can cause fatigue (extreme tiredness) and long-term pain. It may also take time to receive the correct diagnosis due to the wide range of symptoms that joint hypermobility syndrome can cause.

However, once diagnosed, joint hypermobility syndrome can be treated using a combination of exercise andphysiotherapy (where physical methods are used to promote healing). An exercise programme to improve fitness and muscle strength may also be effective at reducing pain. Read more about treating joint hypermobility.

The nature of joint hypermobility syndrome means that you are at increased risk of injuries, such as dislocations and soft tissue injuries. Managing joint hypermobility syndrome may therefore involve treating short-term injuries as they arise, while following a long-term treatment plan to manage daily symptoms. 

Causes of joint hypermobility

Joint hypermobility is often hereditary (runs in families). One of the main causes of joint hypermobility is thought to be genetically-determined changes to a type of protein called collagen.

Collagen is found throughout the body – for example, in skin and ligaments (the tough bands that link two bones together at a joint).

If collagen is weaker than it should be, tissues in the body will be fragile. This can make ligaments and joints particularly loose and stretchy. As a result, the joints can extend further than usual.

Most cases of joint hypermobility are thought to be linked toEhlers-Danlos syndrome hypermobility type, which is a group of inherited conditions that affect collagen proteins in the body.

Occasionally, joint hypermobility may be part of a rare and more serious condition such as:

• osteogenesis imperfecta – a condition that affects the bones
• Marfan syndrome – a condition that affects the blood vessels, eyes and skeleton
• Ehlers-Danlos syndrome vascular type – a condition that can cause the arteries, bowel or womb (in pregnant women) to rupture (split)

Read more about the causes of joint hypermobility.

How common is joint hypermobility?

It is not clear how many people in the UK have joint hypermobility. There are estimates that up to 3 in 10 people may be affected to some degree. It affects women more than men, possibly because female hormones increase flexibility.

Joint hypermobility is common in children. Children with joint hypermobility can bend into unusual positions (often referred to as ‘double-jointed’).

In many children, the joints become stiffer by the time they reach adulthood, although in some people, joint hypermobility and its associated symptoms continue into adult life.

Marfan syndrome affects around 1 in 5,000 people.