Hypermobility: symptoms, causes, assessment and management

The NHS says you or your child may have joint hypermobility syndrome if you:

• often get tired, even after rest;

• keep getting pain and stiffness in your joints or muscles;

• keep getting sprains and strains;

• keep dislocating your joints (they "pop out");

• have poor balance or co-ordination;

• have thin, stretchy skin; or

• have bladder or bowel problems.

The Hypermobility Syndromes Association (HMSA), a UK charity, describes a hypermobile joint as one that can bend beyond the typical range of movement. It says many people are hypermobile (around 1 in 10), that it is more common in women and children, and that it is common in gymnasts, athletes, dancers and musicians. Many hypermobile people have no significant symptoms, which the HMSA calls asymptomatic hypermobility. The NHS says some people with joint hypermobility syndrome do not have symptoms.

The Ehlers-Danlos Society (an international charity) explains that hypermobility without pain or other symptoms does not need to be treated, and that the problem arises when joints are not just hypermobile but also unstable. It describes hypermobility spectrum disorders as symptomatic joint hypermobility that cannot be explained by other conditions.

The NHS says joint hypermobility syndrome usually affects children and young people and often gets better as you get older. The Ehlers-Danlos Society says most babies and children are naturally very flexible and many people become less flexible as they grow, but hypermobility continues into adulthood for some, up to about 20% of people.

The NHS says to see a GP if you think your child has joint hypermobility syndrome. The GP can check flexibility and may arrange blood tests or an X-ray to rule out other conditions. A GP may refer a child to a physiotherapist, occupational therapist or podiatrist.

The NHS says a GP will usually test for joint hypermobility syndrome by checking the flexibility of your joints using a test called the Beighton scoring system. They may also refer you for a blood test or X-ray to help rule out other conditions, like arthritis.

The Ehlers-Danlos Society describes the Beighton score as a 9-point scale: one point is given for each of the following that show hypermobility on examination, being the little fingers, thumbs, elbows and knees on each side, and the lower spine. A positive score is 5 out of 9 or more in adults, 6 out of 9 in children before puberty, and 4 out of 9 in adults over 50. It says the score is a screening tool, and people often have hypermobility in joints it does not measure, so it should not be relied on alone.

The NHS says there is no cure for joint hypermobility syndrome. The main treatment is improving muscle strength and fitness so your joints are better protected. A GP may refer you to a physiotherapist, occupational therapist or podiatrist for specialist advice, and you can also pay for these privately. These therapies can help to reduce pain and the risk of dislocations, improve muscle strength and fitness, and improve posture and balance.

For joint pain, the NHS says paracetamol and anti-inflammatory painkillers such as ibuprofen may help, and a GP may be able to prescribe stronger painkillers or refer you to a pain clinic if you are in severe pain. Warm baths, hot water bottles and heat-rub cream can help ease joint pain and stiffness.

The HMSA says that with the right management many hypermobile people find that their lives improve.

The NHS lists things that help improve joint and muscle strength and reduce strain:

• Do gentle exercise. Start with low-impact exercise such as swimming or cycling if you have not been active before; not exercising can make symptoms worse.

• Maintain a healthy weight.

• Wear supportive shoes, and special insoles (orthotics) if a podiatrist recommends them.

• Do not overextend your joints just because you can.

• Do not do repetitive exercises or activities; take regular breaks (called pacing).

The NHS says joint hypermobility syndrome can run in families and cannot be prevented. Usually the joints are loose and stretchy because the ligaments that should make them stronger and support them are weak, because the collagen that strengthens the ligaments is different from other people's.

The HMSA says symptomatic hypermobility can be due to heritable disorders of connective tissue such as Ehlers-Danlos syndromes and Marfan syndrome, to joint shape, looser ligaments or poor muscle tone without a connective tissue disorder, to other conditions such as Down's syndrome, or to injury or repeated stretching or training. It adds that hypermobility often becomes symptomatic after something changes, such as injury, illness, stress, pregnancy or changes in activity levels.

The NHS says most experts agree that joint hypermobility syndrome is part of a spectrum of hypermobility disorders that includes Ehlers-Danlos syndrome. The HMSA lists conditions that often exist alongside hypermobility, including autism, autonomic dysfunction, mast cell activation disorders, anxiety and depression and fibromyalgia, and says research is ongoing into how they might be linked.

On the NHS you can start with a GP, who may refer you to physiotherapy, occupational therapy, podiatry or a pain clinic. The NHS notes that physiotherapists, occupational therapists and podiatrists can also be seen privately.

If you are told you have a hypermobility spectrum disorder or Ehlers-Danlos syndrome, ask who will coordinate your care, because symptoms can cross several specialties.