Joint hypermobility syndromes

The usual cause is in your connective tissue, the collagen-based material that lends ligaments and other supporting structures both strength and stretch; less often, the shape of the joints or the tone of the muscles plays a part. Where that tissue is naturally stretchier, the joints move beyond the usual range. Because the trait is largely inherited, it often runs in families, and for most people it is simply part of the normal range of human variation, not a disease.

Some things make it more likely:

• Children and younger adults have it more often, and joints tend to stiffen gradually with age
• Women, and people from some ethnic backgrounds, have it more often
• Occasionally it comes from a wider disorder of the connective tissue

For most people there is no illness behind it: the joints simply reflect how their tissues are made.

When hypermobility does cause symptoms, they can include:

• Joints that ache, especially after activity
• A feeling that joints are unsteady, and joints that slip partly or fully out of place easily
• Sprains and other soft-tissue injuries that keep happening
• Tiredness, and sometimes, in the wider forms, other symptoms too

The doctor asks how your symptoms started and what your joints do, measures how far they move, and checks whether the hypermobility is on its own or part of a broader pattern. Two names you may come across when symptoms go further are hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS); each is diagnosed clinically, by history and examination. A large part of the point is to separate simple, harmless hypermobility from cases that call for a more structured plan.

If certain joints are sore, ultrasound can look at the soft tissues around them. Point-of-care ultrasound is part of the consultation with Dr Borukhson, and the ultrasound clinic page sets out what the scan involves.

At the centre of the plan is building up the muscles that hold the joints steady, usually with a structured exercise and physiotherapy programme, along with advice on protecting the joints and coping with pain. Therapies like these can help to reduce pain and the risk of dislocations. Painkillers such as paracetamol, or ibuprofen as tablets, a gel or a spray, may help to ease the pain of a bad spell, and a pharmacist can say which suits you. Other specialists are brought in where that helps. You and Dr Borukhson settle the plan together.

Everyday care aims at joints that are strong and stable but not overstrained. Low-impact exercise is a good place to start: swimming and cycling build strength around the joints with little strain on them, and staying lightly active between physio appointments keeps the benefit going.

Some everyday habits help:

• Pacing what you do, with breaks from tasks you repeat
• Not forcing joints to the end of their range, stretching to the limit included
• Working on your posture, which a physiotherapist can help with
• Wearing supportive shoes, with insoles if a podiatrist has recommended them
• Looking after your sleep and your energy, since tiredness often comes with the symptoms
• If you use ibuprofen gel or spray, not smoking and keeping clear of naked flames, because clothing the gel or spray has touched catches fire more easily

The long-term picture is generally encouraging. As strength and confidence build, symptoms tend to settle, and once people find a routine that they can keep up, many cope well for years. If the pain is affecting your mood or your sleep, the ideas in the fibromyalgia guide may help as well.

A routine review suits most symptoms of hypermobility. The exceptions are in the two lists below, the gravest first, each with its route, and in the paragraph after them.

Treat any of these as a 999 or A&E emergency: call 999 and do not drive yourself to A&E.

• Severe illness with suspected sepsis: a high fever with shaking, confusion, rapid breathing, or feeling dramatically worse over hours
• With a fever or feeling unwell, a rash that does not fade when you press it, a stiff neck with eyes that cannot bear bright light, or skin, lips or tongue turning blue, grey, pale or blotchy, since these can be signs of meningitis or sepsis; on black or brown skin the rash and the change of colour may be easier to see on the palms of the hands or the soles of the feet
• A joint you cannot put weight on or move, or that has moved out of place, or, after a fall or injury, very bad pain or any tingling or numbness
• After an injury, a crack heard as it happened, or skin around it that has turned blue, grey or cold, since these can be signs of a broken bone
• Chest pain that is crushing, tight or like a pressure, that spreads to an arm, the jaw, the neck, the stomach or the back, that comes with breathlessness, sweating, feeling sick or feeling light-headed, or that came on suddenly and does not go away
• Breathlessness that is severe, with gasping, choking or no breath to get words out; or coughing up blood
• Palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, since a heart whose muscle or rhythm is affected has to be checked at once
• A faint after which you cannot be woken within a minute, do not fully recover, or have trouble speaking or moving, or a faint with chest pain, a pounding, fluttering or irregular heartbeat, a seizure or a serious injury, or one that happened during exercise or while lying down, since these can mean a problem with the heart or the brain
• Sudden weakness or numbness on one side, a drooping face or difficulty speaking, a sudden severe headache, sudden confusion or a seizure, or sudden loss of vision, any of which can be a stroke, even if it stops after a short time, and an arm or a leg that suddenly goes weak or numb, with no injury or dislocation behind it, is one of these signs
• An eye that suddenly and completely loses its sight
• Lips, mouth, throat or tongue that suddenly swell, a throat that feels tight, very fast breathing or a struggle to breathe or to swallow, skin, tongue or lips turning blue, grey or pale (on black or brown skin this may be easier to see on the palms of the hands or the soles of the feet), becoming suddenly very confused, drowsy or dizzy, or fainting and not being able to be woken, since this can be a severe allergic reaction, anaphylaxis, which can follow a dose of any medicine

Any of these needs an assessment that is urgent, on the same day, from your GP or NHS 111:

• A joint that is hot and swollen, with a fever or feeling unwell, since an infected joint has to be ruled out at once, at A&E or through NHS 111
• A joint that has become hot and very swollen suddenly, or is worsening quickly, even without a fever, since an infected joint does not always announce itself with one
• Joint pain with a fever, or feeling hot, cold or shivery, or generally unwell, since an infection in or around a joint has to be found the same day
• New chest pain, new palpitations, or breathlessness that is new or getting worse, with none of the signs in the first list, since the heart and the lungs need checking that day; palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, belong to the first list; in pregnancy, breathlessness that comes on suddenly, or when you lie down, or with dizziness, is for your midwife or maternity unit straight away
• After an injury, swelling or bruising that is large or still getting worse, or a kneecap that has slipped out of place for the first time and gone back by itself, since a break, a torn ligament or damage around the joint has to be ruled out; NHS 111 can say where to go, and an urgent treatment centre can sometimes X-ray it; a joint or limb left at an odd angle or out of shape after the injury, a knee that swells up very quickly or gave a pop or a snap, or a shoulder that is painful, bruised or swollen after it slipped out of place, is a 999 or A&E emergency

After an injury, a joint or limb left at an odd angle or out of shape, a knee that swells up very quickly or gave a pop or a snap, or a shoulder that is painful, bruised or swollen after it slipped out of place, is a 999 or A&E emergency. With none of the signs in the first list, a single faint is for a GP appointment, so that its cause can be checked, and fainting that keeps happening needs a GP within days, so that the cause can be found; one possible cause, more likely with flexible joints, is the body's handling of the heart rate and blood pressure on standing up. Book a routine review if joints keep slipping partly or fully out of place and going back in the way you have come to know, or feel unstable much of the time, if the pain is steadily getting worse, or if new symptoms appear beyond the joints, such as marked tiredness or digestive trouble. No referral is needed to be seen here; next-working-day appointments can almost always be arranged, and same-day appointments are sometimes possible. If you cannot tell how urgent something is, asking is never a mistake.

Where hypermobility brings symptoms, an assessment followed by a structured plan can reduce the pain and steady the joints, and where it is harmless, the assessment can say so with confidence. Flexible joints that also hurt or feel unstable are worth a specialist's look.

Do hypermobile joints always cause problems?

No. Hypermobility is common, with estimates running from about one person in thirty to one in five, and many people have no trouble from it at all; for some it is even an advantage. Pain or instability develops in just a minority of those with hypermobile joints, and an assessment helps to tell which group you belong to.

How do doctors assess hypermobility?

By history and examination rather than by a scan. The assessment covers how your joints behave, how far they move, often measured with a short set of movements called the Beighton score, and whether the hypermobility is a feature on its own or part of a wider pattern. Point-of-care ultrasound is part of the consultation with Dr Borukhson, so a painful joint can have the soft tissues around it looked at in the same visit.

How is hypermobility treated?

Mainly a structured programme of exercise and physiotherapy that strengthens the muscles which support and steady the joints, with advice on protecting the joints and on handling pain. For hypermobility, exercise can be a main part of the care: it can improve muscle strength and balance and help to stabilise loose joints.

Is hypermobility ever a sign of a wider condition?

Occasionally, yes: hypermobility can be one sign of a wider syndrome that reaches beyond the joints, and checking for that is part of the assessment. For most people that is not so, and a clear assessment is reassuring in its own right. If a wider pattern seems likely, other specialists may be involved.

When do hypermobile joints need a doctor?

A joint that has come out of place and will not go back, a joint you cannot move or put weight on, or, after a fall or injury, very bad pain, any tingling or numbness, a knee that swells up very quickly or gave a pop or a snap, or a shoulder that is painful, bruised or swollen after it slipped out of place, is a 999 or A&E emergency, and so is an arm or a leg that suddenly goes weak or numb with no injury or dislocation behind it, since that can be a stroke. Call 999 and do not drive yourself to A&E. A kneecap that slips out for the first time after an injury and goes back by itself needs NHS 111 the same day. A joint that turns hot and swollen needs the same day: with a fever or feeling unwell, at A&E or through NHS 111, and otherwise from your GP or NHS 111; joint pain with a fever is for your GP or NHS 111 that day too, and the lists under When to seek help give the other signs. Short of those, if your flexible joints hurt or feel unstable, slip partly or fully out of place and go back again and again, or you keep spraining things, a review with a GP or a specialist is worthwhile: it can confirm whether hypermobility is the cause and work out how to make the joints more comfortable and stable.