If you have joint hypermobility, this booklet will help you, your family and friends. It explains what joint hypermobility is, what causes it, the usual symptoms, and what can be done to treat it. It also explains what you can do to help yourself – for example, you can avoid certain sports which will make your symptoms worse.
Joint hypermobility is not a type of arthritis – it just means that you can move some or all your body joints in a way that most people cannot – and it only affects a small number of people. It can be very mild and not need treatment or it can be more severe, where the joints are easily dislocated. It can also help some people, like dancers and musicians.
Very rarely, joint hypermobility is part of a more serious inherited illness, and we discuss this briefly at the end of this page.
What is joint hypermobility?
If you have joint hypermobility, some or all of your joints have an unusually large range of movement. You may have known that your joints were very ‘supple’ even from a young age. You may have been ‘double-jointed’, or able to twist your limbs into unusual positions. Athletes train to achieve this to some extent – what they call ‘flexibility’. Some doctors call it ‘joint hyperlaxity’.
Women are often more supple than men of the same age. We become less supple as we get older. Certain racial groups are more supple than others. But even these rules may be broken. For example, the music hall contortionist, Norwood the Amazing Flexible Fellow, enjoyed a long career as a circus performer and could twist his body into amazing shapes until he was aged 80.
How is it measured?
Variations between one person and another make it difficult to measure hypermobility. The most popular system is the ‘Carter and Wilkinson’ score, modified by Professor Peter Beighton (see figure below). Give yourself one point for each of the five simple tests you can do. Do the tests on the arm and leg on both sides of your body, so the maximum score is nine. Most people score less than two. Only about one or two in a hundred healthy people score five or more out of nine. If you score highly, you have ‘joint hypermobility’. In general you are likely to have the symptoms and problems we discuss in this booklet if you score five out of nine or more. (This does not mean that you will have the problems associated with the ‘Rarer inherited conditions’ discussed below.)
This simple scoring hides the fact that some people are particularly supple at just one or a few joints. For example, some people are supple in the spine but not elsewhere, and others score eight for arm and leg joints but have a relatively stiff spine. Sometimes the pattern of joints affected provides clues to the reasons for the suppleness of the joints.
What causes joint hypermobility?
Current thinking suggests that there are four factors, which affect different people in different proportions. They are:
- The shape of the ends of the bones (where they move at the joints)
- Weak or stretched ligaments caused by problems with collagen and other proteins (the ligaments are bands which hold your joints in place)
- The tone of your muscles (this affects whether joints are held loosely or more rigidly)
- Your sense of joint movement (this is the sense that tells you exactly where your joint is positioned and whether it is over-stretched).
The shape of the ends of the bones
Some joints normally have a large range of movement, like the shoulder and hip. Both these joints look like a ball in a socket. If you inherit a shallow rather than a deep socket, you will have a relatively large range of movement, but only at these particular joints. If your hip socket is particularly shallow, then your hip may dislocate easily.
Weak or stretched ligaments caused by protein problems
The ligaments that keep your joints in place are made of several types of protein fibre. These proteins include elastin, which gives elasticity, and collagen, which gives strength. The collagen fibres in your ligaments tend to bind together more as you get older, which is one reason why we get stiffer with age. These fibres are built up by biochemical reactions in the body. A small difference in one of these biochemical reactions can alter the protein fibres and cause weak or easily stretched ligaments. If your joint hypermobility is caused by altered collagen fibres, then you will usually score eight on the Carter and Wilkinson system and all the ‘peripheral’ joints will be affected (with the knee and the base of the thumb being particularly supple). The peripheral joints include all the joints in the body except those of the spine and the joints where the sacrum bone at the base of the spine meets the rest of the pelvis (the sacroiliac joints). The non-peripheral joints are known as the axial joints.
These proteins also have other effects. We know that women are almost always more supple than men of the same age. This suggests that the female sex hormones alter the collagen proteins. Women are also generally most supple just before menstruation. This becomes even more so in late pregnancy, because of the effect of a hormone called relaxin. This hormone allows the pelvis to expand so the head of the baby can pass through.
Different races have differences in their joint mobility which may reflect differences in the structure of the collagen proteins. For example, people from the Indian sub-continent often have much more supple hand movements than Europeans.
The tone of your muscles
The tone (or stiffness) of your muscles is controlled by your nervous system, and also influences the range of movement. You can use special techniques to change your muscle tone. For example, you can use yoga to become more relaxed and your joints can then become more supple.
Your sense of joint movement
If you find it difficult to describe the exact position of your joints with your eyes closed, then you may develop hypermobile joints. This happens because you are likely to over-stretch a joint before you notice you have done so.
What are the symptoms of joint hypermobility?
If, for one or more of the above reasons, you have hypermobile joints, then you may have the following symptoms. But not everybody with supple joints has these symptoms.
The most frequent symptom is pain. This usually happens after hard physical work or exercise, where your muscles have to work much harder if the joints are supple than if they are stiff. As a result, what doctors call an ‘over-use’ develops in the muscles around the joint (though it may appear to come from the joint). This is the sort of experience that athletes have after hard training or after an event. Sometimes fluid collects inside the hypermobile joint, making it feel tense and stiff. This is probably because your body is trying to repair the small amounts of damage that are caused if the joint is over-stretched. Your pain will often get worse as the day goes on and improve at night with rest. Sometimes, however, pain also occurs at night.
If your hypermobile joints are caused by altered collagen protein, then collagen may be weakened in other parts of your body. This can lead to hernias or varicose veins. You may also have a flat arch to your foot and this leads to foot ache, particularly after standing for a long period. Backache may affect you if the base of your spine is particularly supple, sometimes as a result of one vertebra slipping on another. This is called a spondylolisthesis.
These problems do not mean that you have a disease – they are just the unfortunate effects of having joints that are more supple than most.
We must emphasise that only some people with hypermobile joints develop these symptoms. For reasons we do not understand, a large proportion of hypermobile people do not have any symptoms or problems.
Why is it easy to injure hypermobile joints?
You do risk injuring hypermobile joints if you over-stretch them. Sometimes the joint can dislocate. This occurs particularly at the shoulder, needing a visit to casualty for a doctor to manipulate it back into place. Some people learn to manipulate their own joints back into place after such injuries.
How can physiotherapy help?
Opinions do vary but recent research funded by the Arthritis Research Campaign (arc) has shown the value of exercise. In most cases, you can reduce your symptoms by gentle exercises to strengthen and condition the muscles around the joints that are particularly supple. These exercises may be against weights or may just be the sort that anybody can do themselves at home – a physiotherapist can advise on these. The important thing is to do these strengthening exercises frequently and regularly and do not over-do them. Use small weights and, if you are worried that you might be in danger of over-doing the exercises, again, ask for advice from a physiotherapist.
Some people with joint hypermobility find it helpful to keep moving – you can wear a splint or a firm elasticated bandage over the supple joint to protect against dislocation. Occupational therapists can advise on these.
Which tablets can relieve the symptoms?
If rest and physiotherapy fail to control symptoms of hypermobile joints, your doctor may prescribe painkillers (analgesics). Paracetamol is probably the best and safest, and you can buy it from high-street chemists. You can use up to eight 500 mg tablets a day. Your doctor may prescribe a stronger, compound painkiller such as coproxamol, cocodamol or codydramol.
If the joint often swells up, an anti-inflammatory drug may be better. The best example is ibuprofen. This can also be purchased from chemists without prescription, and you can take up to eight 200 mg tablets a day. Your doctor may prescribe a higher dose upon request or a different anti-inflammatory drug (there are currently about 20 different ones available in the UK). These different drugs are best restricted to those under the age of 60 who are less susceptible to the side-effects (which include damage to the stomach).
You can also apply either painkillers or anti-inflammatories onto the troublesome joint as a spray or cream. This method reduces the side-effects.
Long-term pain (which doctors call ‘chronic’ pain) can get you down and you may need help to cope with this. Some centres offer pain management programmes – you should discuss this with your doctor.
Will surgery help hypermobile joints?
In general, you should avoid surgery if possible, not least because supple tissue does not always heal well and quickly. Also, some hypermobile people are prone to bruising easily and may require more blood transfusions if major surgery is carried out.
However, if you have the bad luck to rupture a tendon, which is more common if you have supple collagen, this should usually be repaired surgically. Otherwise, in general, you should avoid operations if you can. Operations may be suggested to you, such as removing a kneecap that dislocates frequently, or stabilising a very supple joint with a pin to fuse it. Avoid these if you can as they may eventually cause osteoarthritis.
Is there any link with osteoarthritis?
Many doctors believe that joint hypermobility is linked to the development of premature osteoarthritis. Osteoarthritis is a type of arthritis which affects the cartilage within the joint (see arc booklet ‘Osteoarthritis’ for a detailed description). We believe that there is a link if your hypermobility is due to abnormal shape of the bone surfaces or to abnormal joint position sense. If you have these types of hypermobility then you are more likely to develop osteoarthritis. But most hypermobile people have no more trouble with osteoarthritis than other people.
How can I help myself?
As described above, exercise and some sports may bring on your symptoms and cause pain. Non-contact sports are safer, but choose the right one. For example, you should not play squash, where you often have to twist your joints under stress in confined spaces. This is one of the worst possible pursuits for people who are hypermobile or are prone to hypermobility.
Children do not have to avoid physical education – what is important is to avoid over-stretching the joints. Swimming can help, where the weight of the body is supported by water, and so can cycling. We also recommend simple strengthening exercises, as we mentioned previously.
There is no specific diet to help joint hypermobility, but you should eat a healthy diet and keep your weight under control. Climate change, either changes in temperature or humidity, does not seem to affect the symptoms of hypermobile joints.
Are there any advantages of having hypermobile joints?
There are some advantages to hypermobile joints. They can help you in certain sports like gymnastics and diving. Hurdlers must have a wide range of movement at the hip, and a wide range of movement at the shoulder helps swimmers, particularly those using butterfly stroke. Athletic coaches will in any case aim to promote ‘flexibility’ alongside strength and endurance if the athlete is to enjoy all-round advantages.
Flexible fingers can help musicians, particularly keyboard players and string players, though in the latter case only the hand that stops the strings needs to be supple. For the bowing arm, a flexible shoulder may be more help. Some famous musicians were well known for the exceptional flexibility of their fingers, for example the violinist Paganini and the pianist Rachmaninov.
Dancers provide the most difficult challenge. They need a wide range of movement at most (though not necessarily all) joints. But some dancers will always be unable to perform certain movements, and this must be recognised by teachers and choreographers.
Will hypermobility be passed on to my children?
The range of movement of the joints depends upon so many different factors that this is very hard to predict. If your hypermobility comes from abnormal collagen proteins, there is often strong evidence of heredity (that is, that the condition is passed on from one generation to the next). This means that, at worst, half of all children of a person with this type of hypermobility will be affected though, for reasons we do not understand, the degree to which the child is affected is very variable.
Where joint hypermobility affects one or a small number of joints, the inheritance is even harder to predict. And about a quarter of all examples of hypermobility affect people who have no previous family history of it.
Rarer inherited conditions associated with joint hypermobility
This booklet has concentrated on the vast majority of people with hypermobile joints, only some of whom develop symptoms. Doctors usually say this group of people has ‘benign hypermobility syndrome’. This means that other parts of their bodies are not affected.
Occasionally, joint hypermobility is just one part of a more widespread problem. With these much rarer conditions, other parts of the body are involved. This is because of more serious damage to the tissue proteins. Examples are osteogenesis imperfecta (OI), the Marfan syndrome and the Ehlers–Danlos syndrome (EDS). Osteogenesis imperfecta particularly causes fragile bones. The Marfan syndrome involves the heart, the eyes and the blood vessels. Ehlers–Danlos syndrome is the most difficult to diagnose because there are many different types, the most severe causing weakness of the major blood vessels which may swell (the swelling is called an aneurysm). All these conditions are fully described in separate literature which is available from the patient support groups for each condition. Write to these groups for further information if you or your doctor suspects that you may have one of these rare conditions.
Cartilage – strong material on bone ends that acts as a shock absorber. Its slippery surface allows smooth movement between bones.
Collagen – the main substance in the white, fibrous connective tissue which is found in tendons, ligaments and cartilage. This very important protein is also found in skin and bone.
Ligament – tough, fibrous band which holds two bones together in a joint.