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Condition

Joint hypermobility This booklet provides information and answers to your questions about this condition.

Arthritis Research UK booklets are produced and printed entirely from charitable donations. What is joint hypermobility?

Hypermobility means that you can move some or all your more than most people can. In this booklet we’ll explain what joint hypermobility is, what causes it and some possible symptoms.

At the back of this booklet you’ll find a brief glossary of medical words – we’ve underlined these when they’re first used.

www.arthritisresearchuk.org Joint hypermobility information booklet Arthritis Research UK

What’s inside? 2 Joint hypermobility at a glance 5 What is joint hypermobility? 5 Wha t causes joint hypermobility? 6 Who has hypermobile joints? 8 What are the symptoms of joint hypermobility syndrome? 10 How is joint hypermobility diagnosed? joint hypermobility syndrome? 10 What – Physical treatments therapies are there for – Drugs – 12 Self-help and daily living – Exercise – Diet and nutrition – Complementary medicine – Footwear 14 Is hypermobility linked to other conditions? 16 Glossary 18 Wher e can I find out more?

Page 3 of 24 Joint hypermobility information booklet At a glance Joint hypermobility Joint hypermobility is very common and most people won’t have any symptoms.

What is joint hypermobility? Hypermobility means that you can move some or all of your joints more than most people can. You may think of it as being double-jointed. If a number What causes hypermobility? of joints are affected, doctors may refer to this as generalised joint hypermobility. Some people have a single hypermobile joint. This might be caused by: Having a wide range of movement can have its advantages, for example • injuring the that keep for dancers or athletes. However, the joint within its normal range of some people with hypermobile joints movement experience pain or other symptoms, • unusually shaped , such as and this is known as joint hypermobility shallow hip sockets. syndrome. It may help to think of the Possible causes of generalised difference like this: joint hypermobility include: Generalised joint hypermobility + • inheriting the condition from a parent symptoms = joint hypermobility – about 75% of people affected by syndrome joint hypermobility have a previous Hypermobility may also be a feature of family history of it other conditions. • having extra-elastic – though the reasons for this aren’t yet fully understood.

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What are the symptoms of What else might help? joint hypermobility syndrome? You might find the following useful: When hypermobility does cause • exercise – swimming, cycling and low- symptoms, these may include: resistance strengthening exercises are • muscle strain/pain often recommended • joint • occupational therapy – to help • joint pain you learn how to avoid straining hypermobile joints • partly or fully dislocated joints • special insoles in your shoes (orthoses) • hernias or varicose veins, caused by to support the arch of your foot. weakened fibres. Remember that it’s very common to have hypermobile joints and most What treatments are there for people won’t have any problems. joint hypermobility syndrome? However, some people will find The aim of treatment is to reduce that their symptoms affect their your symptoms, not to make you everyday life. less hypermobile. If you have joint hypermobility syndrome then a combination of rest, exercise and physiotherapy will often help, but drug treatments are also available if needed, including: • painkillers (analgesics), for example paracetamol, codeine • non-steroidal anti-inflammatory drugs (NSAIDs), for example ibuprofen.

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Joint hypermobility information booklet

What is have joint hypermobility syndrome. This may also be referred to as benign joint hypermobility? joint hypermobility syndrome (BJHS) or Hypermobility simply means that you sometimes Ehlers–Danlos syndrome type can move some or all of your joints more III. It may be useful to think of it like this: than most people can. You may have been aware from an early age that your Generalised joint hypermobility + joints were more supple than other symptoms = joint hypermobility people’s – you may think of it as being syndrome double-jointed. If a number of joints are affected your doctor may refer to this as What causes generalised joint hypermobility. joint hypermobility? Hypermobility isn’t a medical condition Four factors may affect whether or not in itself, and many people don’t realise you have hypermobile joints: they are hypermobile if it doesn’t cause them any problems. Hypermobility might Weak or stretched ligaments – even be an advantage in sports, playing Ligaments are made up of several types musical instruments, and dance. of fibre, including (which gives stretchiness) and collagen (which However, some people with hypermobile gives strength). Small variations in joints may have symptoms such as joint or chemical processes in the body can muscle pain and may find that their joints result in weakened collagen fibres and are prone to injury or even dislocation. more in the ligaments that If you do have symptoms then you may help to hold your joints together.

Figure 1 Supple hands can help some musicians, like in the left hand of this guitarist.

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This is likely to cause hypermobility in However, we don’t yet know whether many joints. There’s fairly strong evidence joint pain linked to hypermobility might that hypermobility caused by abnormal be inherited. collagen can be inherited. If one parent Gender – Women are more likely than has this type of hypermobility then half men to have hypermobile joints. of their children are likely to inherit it, though members of the same family may Age – The collagen fibres in your be affected differently. ligaments tend to bind together more as you get older, which is one reason The shape of your bones – If the why many of us become stiffer with socket part of your hip or shoulder joint age. Hypermobile people who are very is particularly shallow, the range of flexible and pain-free when younger movement in that joint will be greater may find that they’re less flexible when than usual and there’ll also be a greater they reach their 30s or 40s and that chance of dislocation. This is likely to movements become more affect a single joint or a small number uncomfortable. of joints. It isn’t a common cause of hypermobility but is likely to be inherited. Ethnic background – People of different ethnic backgrounds have differing Muscle tone – The tone (or stiffness) degrees of mobility in their joints, which of your muscles is controlled by your may reflect differences in the structure nervous system. The more relaxed your of the collagen . For example, muscles are, the more movement you’ll people from the Indian sub-continent have in your joints. often have much more supple hands Sense of joint movement than Europeans. () – Some people find it Training/exercises – Joint hypermobility difficult to sense the position of a joint can sometimes be developed, for without being able to see it. example by gymnasts and athletes, through the training exercises they do. Yoga can also make the joints more Who has hypermobile supple by stretching the muscles. joints? Other conditions – Many people with Some people are more likely than others Down’s syndrome are hypermobile. to have hypermobile joints. The main And hypermobility is also a feature factors that play a part are: of some rarer inherited conditions Genetics – Hypermobility resulting (see section ‘Is hypermobility linked from abnormal collagen or from shallow to other conditions?’). joint sockets is likely to be inherited.

Page 8 of 24 Exercise can help to ease the symptoms of joint hypermobility syndrome by strengthening and conditioning the muscles that support the joints.

Strengthening exercises should be done regularly but start gently to avoid straining your joints.

See Arthritis Research UK booklets Occupational therapy and arthritis; Physiotherapy and arthritis. Joint hypermobility information booklet

What are the symptoms Joint stiffness: Sometimes your joint may feel tense or stiff, which may be caused of joint hypermobility by fluid collecting inside your joint. This syndrome? is probably because your body is trying Although hypermobility itself isn’t a to repair the small amounts of damage medical condition, some people with that are caused if a muscle or joint is hypermobile joints may be more likely overstretched. Your pain will often feel to have aches and pains when doing worse as the day goes on and improve everyday tasks. A few may find they’re at night with rest. affected to the point where everyday Foot and ankle pain: You may easily tasks become difficult to manage. twist and strain at the ankles, and have Symptoms of joint hypermobility a flat arch to your foot that can lead to syndrome may include: foot pain, particularly after standing for a long time. Muscle strain or pain (especially after physical work or exercise): Your muscles Neck pain and backache: This can be have to work harder if your joint is very a problem if your spine is particularly mobile and this can lead to muscle strain supple, and the muscles around your and a general feeling of . spine aren’t working to support it In effect, an ‘overuse’ injury develops in correctly. Very occasionally the bones in the muscles around your joint (though your back (vertebrae) can slip on another the pain may seem to come from the – this is called a . joint itself). Injured or dislocated joints: Hypermobile joints are more likely than normal joints to get injured if they’re overstretched. Sometimes the joint may dislocate – this is most common in the shoulder or the kneecap. Sometimes the soft tissues in and around joints (, If you do have , ligaments) can tear. symptoms associated with hypermobility, these can often be managed with a combination of exercise therapy and painkillers. Page 10 of 24

Joint hypermobility information booklet

How is joint hypermobility What treatments are there diagnosed? for joint hypermobility Your GP will be able to make a diagnosis syndrome? of generalised joint hypermobility Joint hypermobility itself isn’t something or joint hypermobility syndrome by that can be ‘cured’ or changed. It’s just the examining you and asking you a series way your body is built. However, where of questions. it causes symptoms, these can often be The Beighton score is a quick measure controlled by a combination of pacing of your flexibility using a standard set your activity and physiotherapy. However, of movements at the thumb/wrist, fifth drug treatments are also available if you finger, elbows, lower back, and knees. need them. A high Beighton score means that you’re hypermobile but it doesn’t mean you Physical therapies have joint hypermobility syndrome. Research has shown the value of If you have problems with joints other exercise. In most cases you can ease than those included in the Beighton your symptoms by doing gentle score, then you should mention these to exercises to strengthen and condition your doctor. Other joints which may be the muscles around the hypermobile affected include the jaw, neck, shoulders, joints. The important thing is to do mid-spine, hips, ankles and feet. these strengthening exercises often and regularly but not to overdo them. The Brighton criteria take into account Use only small weights, if any. A how many hypermobile joints you physiotherapist will be able to advise have and whether you’ve had pain in you on suitable exercises. For some those joints. If you have four or more people gentle stretching seems to be of hypermobile joints and have had additional benefit. pain in those joints for three months or more then it’s more likely that you You can use splints, taping or firm have joint hypermobility syndrome. elasticated bandages if you need These criteria also take account of other to protect against dislocation. An concerns such as dislocations, injuries to occupational therapist or physiotherapist the tissues around the joints, and lax . can advise on these. If you have any of the symptoms listed Drugs in this booklet, you should speak to your Painkillers (analgesics) are the usual doctor to find out whether you have treatment if you have symptoms. joint hypermobility syndrome or whether Paracetamol is normally the first choice. something else is causing the pain. It’s often better to take a dose before

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activity to keep the pain under control This may not be quite as effective but may rather than waiting until it’s very bad. be an option if the tablets aren’t suitable Your doctor can prescribe a stronger for you. painkiller such as co-codamol or co- dydramol if needed. Note that these NSAIDs and side-effects painkillers sometimes cause side-effects Like all drugs, NSAIDs can sometimes such as constipation or dizziness. have side-effects, but your doctor will take precautions to reduce the risk of If your joint often swells up, especially these – for example, by prescribing the after dislocation, a non-steroidal anti- lowest effective dose for the shortest inflammatory drug (NSAID) such as possible period of time. NSAIDs can cause ibuprofen may be better. You can buy this digestive problems (stomach upsets, from your local chemist or supermarket indigestion or damage to the lining of the without a prescription. See your doctor stomach), so GPs sometimes prescribe if the regular dose isn’t helping, as they them along with a drug called a proton may prescribe a higher dose or a different pump inhibitor (PPI), which will help to NSAID if the standard dose of ibuprofen protect your stomach. isn’t strong enough. You can also get either painkillers or NSAIDs as a spray or a cream, which you can apply directly onto the site of pain.

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NSAIDs also carry an increased risk of Surgery heart attack or stroke. Although the In general, surgery in and or around the increased risk is small, your doctor will joints isn’t recommended for people be cautious about prescribing NSAIDs if with joint hypermobility syndrome there are other factors that may increase unless it’s absolutely necessary. This is your overall risk – for example, smoking, because tissue that’s very supple doesn’t circulation problems, high , usually heal as well as less supple tissue. high cholesterol or diabetes. Also, some hypermobile people can Newer NSAIDs known as COX-2 inhibitors bruise easily and may need more blood (or coxibs) are less likely to cause stomach transfusions if they have major surgery. problems but have been linked with However, if you tear a (which increased risks of heart attack and stroke, is more likely than normal if you have so they aren’t suitable for people who’ve hypermobile joints) then this should had these in the past or for people with usually be repaired with surgery. uncontrolled high blood pressure. Doctors have also been advised to be cautious about prescribing coxibs to Self-help and daily living people who have an increased risk of Exercise heart disease, such as people with high Regular exercise is important as part of blood pressure, high cholesterol levels a healthy lifestyle, and there’s no reason (hyperlipidaemia) or diabetes, or people why people with hypermobile joints who smoke. Some standard NSAIDs have shouldn’t exercise. However, if you find also been shown to be associated with a that certain sports or exercises involve small increased risk of heart attack and movements that cause pain, you should stroke, especially when used in high doses stop these activities until it’s clear why and for long periods. Your doctor should there is pain. With the right strengthening take these risks into account. exercises it may be possible to return to these activities See Arthritis Research UK drug without increasing pain. leaflet Non-steroidal anti- A physiotherapist can inflammatory drugs; Painkillers. advise you about

Page 14 of 24 Joint hypermobility information booklet Arthritis Research UK If any of your joints are prone to dislocation it may help to wear a splint, taping or exercises to improve control of the movements and loads required in your elastic bandage while preferred sport or exercise. exercising. Swimming can help, where the weight of your body is supported by water, although breaststroke can irritate the knee and hip, so it’s best to paddle the legs. Cycling is also recommended. Controlled strengthening and posture exercises such as those undertaken in Complementary medicine Pilates, t’ai chi, or the Alexander technique There’s no evidence to support a may be helpful. Yoga and stretching may particular complementary therapy for help but you should avoid overstretching hypermobility, although acupuncture is your joints. recommended in the National Institute If any of your joints dislocate regularly for Health and Clinical Excellence (NICE) it may help to wear a splint, taping, or guidelines for low . elastic bandage while exercising. You Generally speaking complementary and may need to see a physiotherapist or alternative therapies are relatively safe, orthotist for supports if this becomes although you should always discuss their a significant problem. use with your doctor before starting treatment. It’s important to go to a legally See Arthritis Research UK booklet registered therapist, or one who has a set Keep moving. ethical code and is fully insured. If you decide to try therapies or Diet and nutrition supplements you should be critical of There’s no specific diet to help what they’re doing for you, and base your joint hypermobility, but we’d recommend decision to continue on whether you a balanced diet to keep your weight notice any improvement. under control and for your general health. See Arthritis Research UK booklet See Arthritis Research UK booklet and report Complementary and Diet and arthritis. alternative medicine for arthritis.

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Footwear Although joint hypermobility syndrome There’s a wide variation in the shape of can cause symptoms in various parts of the foot in people who are hypermobile. the body, in most cases it isn’t linked to Most tend to have but a few have other health problems. However, there are a high-arched foot. Special insoles in your some much rarer inherited conditions that shoes (orthoses) may help to support the can be associated with hypermobility. arch of your foot. By re-aligning the foot These include: and the way the body’s weight passes •  – a genetic through the legs it may help balance and condition existing at birth (congenital) reduce pain in the foot, ankle, leg, hip and resulting in fragile bones that fracture lower back. more easily than usual. The whites of the eyes often appear blue in people See Arthritis Research UK booklet affected by this condition. Foot pain •  – a rare inherited disorder that affects the connective tissues of the body (the material that Is hypermobility linked supports and binds other tissue). It’s to other conditions? characterised by unusually long, thin Joint hypermobility isn’t itself a type fingers and toes, heart defects, extreme of arthritis. However, in some cases it tallness, and partial dislocation of the may be associated with – eye lens. for example, when there is an abnormal • some types of Ehlers–Danlos shape to the joint or there has been syndrome (EDS) – which are a tear to the cartilage and this has rare inherited collagen disorders. become worn. Joint hypermobility syndrome is There’s no evidence that the symptoms sometimes referred to as Ehlers–Danlos of osteoarthritis are any worse in people syndrome type III. However, people who are hypermobile than in people with other, rarer types of Ehlers–Danlos who aren’t. If you’re hypermobile we’d recommend keeping to a healthy weight as it’s known that obesity is often an important factor in the development of osteoarthritis.

See Arthritis Research UK booklet Osteoarthritis

Page 16 of 24 Joint hypermobility information booklet Arthritis Research UK

syndrome may have unusually stretchy Sometimes the heart valves may and fragile skin that bruises easily, be floppy. This may not cause any heals slowly and leaves . The joints symptoms and may only be discovered tend to be looser than normal and by chance – for example, during a routine more prone to dislocation. Rarely there medical examination. However, this may also be weakness of the blood may be associated with chest pains and vessels and bowel wall such that these palpitations. Blood pressure may also be may rupture. lower than normal, so some people may Research suggests that people with be more prone to feeling faint. If blood hypermobile joints may have more supple pressure drops when you stand up, or sit collagen in other parts of the body as well, up from a lying position, then your heart which can sometimes cause additional rate may increase noticeably as it pushes symptoms. For example, weakness in the blood back up to your head – this is muscles that squeeze food through the known as postural orthostatic tachycardia digestive system can lead to constipation, syndrome (POTS). bloating and pain (similar to irritable The symptoms of these rarer conditions bowel syndrome, or IBS), or gastric reflux may have a big impact on everyday life. where acid from the stomach flows back If you do have any of these additional into the gullet causing a painful burning symptoms you should speak to your sensation. Weakness in the muscles of the doctor, who will be able to arrange pelvic floor may lead to bladder instability tests if needed and to offer appropriate and urinary incontinence. treatments.

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Glossary Acupuncture – a method of pain relief Non-steroidal anti-inflammatory that originated in China. Very fine needles drugs (NSAIDs) – a large family of drugs are inserted, virtually painlessly, at a prescribed for different kinds of arthritis number of sites on your skin (meridians) that reduce inflammation and control but not necessarily at the painful area. pain, swelling and stiffness. Common This interferes with pain signals to your examples include ibuprofen, naproxen brain and causes the release of natural and diclofenac. painkillers (endorphins). Occupational therapy – a therapy which Analgesics – painkillers. As well as dulling uses a range of strategies and specialist pain they lower raised body temperature, equipment to help people to reach their and most of them reduce inflammation. goals and maintain their independence. Collagen – the main substance in the It’s given by a trained specialist who white, fibrous that’s gives practical advice on equipment, found in tendons, ligaments and cartilage. adaptations or changing the way you This very important protein is also found do things. in skin and . Osteoarthritis – the most common Hernia – a condition where an internal form of arthritis (mainly affecting the part of the body pushes through a weak joints in the fingers, knees, hips), causing point in the muscle or surrounding tissue cartilage thinning and bony overgrowths wall. It often involves the intestine. () and resulting in pain, swelling and stiffness. Irritable bowel syndrome (IBS) – a common condition where the bowel Physiotherapy – a therapy given by doesn’t function as normal, often causing a trained specialist that helps to keep abdominal pain, bloating and episodes of your joints and muscles moving, helps diarrhoea or constipation. ease pain and keeps you mobile. Ligaments – tough, fibrous bands Proton pump inhibitor (PPI) – a drug anchoring the bones on either side of a that acts on an enzyme in the cells of the joint and holding the joint together. In the stomach to reduce the secretion of gastric spine they’re attached to the vertebrae acid. They’re often prescribed along with and restrict spinal movements, therefore non-steroidal anti-inflammatory drugs giving stability to the back. (NSAIDs) to reduce side-effects from the NSAIDs.

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Tendon – a strong, fibrous band or cord that anchors muscle to bone. Urinary stress incontinence – an accidental urine leak caused by pressure in the abdomen (such as a laugh, cough or sneeze) opening the muscular valves to the bladder (sphincter muscles). Varicose vein – swollen and enlarged veins. They’re usually blue or dark purple in colour and may also look lumpy, bulging or twisted. They’re mostly found in the legs.

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Where can I find out more? If you’ve found this information useful You can download all of our booklets you might be interested in these other and leaflets from our website or order titles from our range: them by contacting:

Conditions Arthritis Research UK • Osteoarthritis Copeman House St Mary’s Court Therapies St Mary’s Gate, Chesterfield • Occupational therapy and arthritis Derbyshire S41 7TD • Physiotherapy and arthritis Phone: 0300 790 0400 www.arthritisresearchuk.org Self-help and daily living • Foot pain • Keep moving • Looking after your joints when you have arthritis Drugs • Non-steroidal anti-inflammatory drugs • Painkillers

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Related organisations The following organisations may Hypermobility Syndromes Association be able to provide additional advice Sovereign House and information: 22 Shelley Road Worthing Arthritis Care West Sussex Floor 4, Linen Court BN11 1TU 10 East Road Phone: 033 3011 6388 388 London N1 6AD www.hypermobility.org Phone: 020 7380 6500 Helpline: 0808 800 4050 Marfan Association UK Email: [email protected] Rochester House www.arthritiscare.org.uk 5 Aldershot Road Fleet Brittle Bone Society Hampshire GU51 3NG Grant-Paterson House Phone: 01252 810472 30 Guthrie Street Email: [email protected] Dundee DD1 5BS www.marfan-association.org.uk Phone: 01382 204446 Email: [email protected] Links to sites and resources provided www.brittlebone.org by third parties are provided for your Ehlers-Danlos Support Group general information only. We have no P.O. Box 748 control over the contents of those sites or Borehamwood WD6 9HU resources and we give no warranty about Phone: 020 736 5604 their accuracy or suitability. You should Helpline: 0800 907 8518 always consult with your GP or other www.ehlers-danlos.org medical professional.

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We’re here to help Arthritis Research UK is the charity we’re funding and giving insight into the leading the fight against arthritis. latest treatment and self-help available. We’re working to take the pain away We often feature case studies and for sufferers with all forms of arthritis have regular columns for questions and helping people to remain active. and answers, as well as readers’ hints We’ll do this by funding high-quality and tips for managing arthritis. research, providing information and campaigning. Tell us what you think Everything we do is underpinned Please send your views to: by research. bookletfeedback@ We publish over 60 information booklets arthritisresearchuk.org which help people affected by arthritis or write to us at: to understand more about the condition, Arthritis Research UK, Copeman its treatment, therapies and how House, St Mary’s Court, St Mary’s Gate, to help themselves. Chesterfield, Derbyshire S41 7TD We also produce a range of separate leaflets on many of the drugs used A team of people contributed to this for arthritis and related conditions. booklet. The original text was written We recommend that you read the by Prof. Howard Bird, and updated by relevant leaflet for more detailed Dr Alan Hakim. It was assessed at draft stage information about your medication. by research physiotherapist and clinical specialist Dr Caroline Alexander, and Please also let us know if you’d like consultant senior lecturer and honorary to receive an email alert about our consultant rheumatologist Dr Emma Clark. quarterly online magazine, Arthritis Today, An Arthritis Research UK editor revised which keeps you up to date with the text to make it easy to read, and a current research and education news, non-medical panel, including interested highlighting key projects that societies, checked it for understanding. An Arthritis Research UK medical advisor, Prof. Anisur Rahman, is responsible for the content overall.

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