Joint hypermobility

Joint hypermobility means that some or all of a person's joints can move much further than usual.

People with hypermobility are very supple, so they can bend or stretch their limbs into positions that others find impossible. You may hear it called having loose joints, or being double-jointed.

Many people with hypermobile joints never have any problems. For some, the extra flexibility is even a benefit, as it can be for ballet dancers or gymnasts.

But some people with joint hypermobility do have symptoms, such as:

• pain and stiffness in the joints and muscles
• clicking joints
• joints that dislocate (come out of the correct position) easily
• fatigue (extreme tiredness)
• recurrent injuries, like sprains
• digestive problems, like constipation and irritable bowel syndrome (IBS)
• dizziness and fainting
• thin or stretchy skin

If you have these symptoms along with hypermobility, this could be a sign of:

• hypermobile Ehlers Danlos Syndrome (hEDS)
• Hypermobility Spectrum Disorder (HSD)

A person with hEDS or HSD may also have other symptoms linked to stretchiness in the connective tissues throughout the body. The severity can differ from one person to another.

hEDS or HSD can cause symptoms in your digestive system. The connective tissue there is more stretchy than usual, so the muscles find it harder to squeeze food along, or they squeeze it along too quickly. This can lead to several problems, including:

• gastro-oesophageal reflux disease (GORD)
• gastroparesis, where the stomach has difficulty emptying its contents into the small bowel, which can cause bloating and nausea
• constipation
• irritable bowel syndrome (IBS)

hEDS or HSD can also affect the part of your nervous system that controls the things your body does without you thinking about them, like your heart beating. This is called the autonomic nervous system.

When this part of the nervous system doesn't work as it should, you may have problems after standing up, or after sitting in one position for a while. Your blood pressure can drop too low, and you may feel sick, dizzy and sweaty. You may also faint.

In some people, these problems lead to postural orthostatic tachycardia syndrome (POTS). With POTS, your pulse rate rises rapidly within a few minutes of standing up. You may also have:

• dizziness or fainting
• headaches
• tummy upsets
• sweating
• a sensation of anxiety
• purple puffy fingers and feet
• a pounding or fluttering heart beat (heart palpitations)

People with hEDS or HSD may have other related conditions and further symptoms, including:

• stress incontinence, when urine leaks out because your bladder is under pressure
• hernias, where an internal part of the body, like an organ, pushes through a weakness in the muscle or the surrounding tissue wall
• in women, pelvic organ prolapse, where the organs inside the pelvis slip down from their normal position
• varicose veins, which are swollen and enlarged veins, usually blue or dark purple
• flat feet, where the inner part of your feet (the arch) is not raised off the ground when you stand
• headaches
• drooping eyelids
• a tendency to bruise easily and develop stretch marks
• thin or stretchy skin

If your doctor thinks you may have joint hypermobility, they may use the Beighton score. It's a quick test that checks how far some of your joints can move.

A Beighton score can't confirm a diagnosis on its own, though. Your doctor has to look at all your joints and take your symptoms into account. The score also leaves out some joints, such as the shoulders and hips.

You may also have blood tests and X-rays. These help rule out other conditions linked with joint pains, like rheumatoid arthritis.

The Beighton score is made up of 5 tests, and the results can add up to a total of 9 points. Here is how the points are counted:

• 1 point if you can place your palms on the ground while standing with your legs straight
• 1 point for each elbow that bends backwards
• 1 point for each knee that bends backwards
• 1 point for each thumb that touches the forearm when bent backwards
• 1 point for each little finger that bends backwards beyond 90 degrees

If your Beighton score is 4 or more, you are likely to have joint hypermobility.

A person with hEDS or HSD may also have a number of other symptoms linked to weaknesses in the connective tissues throughout their body.

Joint hypermobility often runs in families, which means it's hereditary. One of the main causes is thought to be a change in a protein called collagen.

Collagen is found all over the body. For example, you'll find it in:

• skin
• ligaments (the tough bands of connective tissue that link 2 bones together at a joint)

If collagen is more stretchy and lax than it should be, the ligaments, tendons and muscles around the joints allow a greater range of movement. The same looseness means they sometimes can't keep the joints stable.

There is no genetic test available at the moment for hEDS or HSD. More than one gene is likely to be involved. There are genetic tests for the rarer forms of EDS.

You can find more information on the website of Ehlers-Danlos Support UK.

If your joint hypermobility doesn't cause any problems, you won't need treatment for it.

But you may need treatment and support if you have hEDS or HSD. These can cause many different symptoms, including joint pain and digestive problems.

If you have symptoms, there are some things you can do yourself that may help. These include:

• eating a healthy diet and keeping to a healthy weight, which can help improve your joint strength and reduce the strain on them
• trying to keep a good sleep routine (sleep hygiene)
• staying as active as you can, but sticking to low-impact exercise like swimming, cycling, pilates or tai chi, to reduce strain on your joints
• wearing comfortable, supportive footwear to support your ankles
• using heat or ice, which can be a helpful pain treatment

If you have a soft tissue injury, to your muscles, tendons, joints or ligaments, the information on soft tissue injury can help your recovery.

If you do exercises that focus on increasing flexibility, such as yoga, be careful not to over stretch hypermobile areas.

If you're struggling with any of your symptoms, you should contact your doctor.

There are also support groups that offer support for people with hEDS or HSD:

• Hypermobility Syndromes Association
• Ehlers-Danlos Support UK

Physiotherapy can help people with joint hypermobility in several ways. It may help to:

• reduce pain
• improve muscle strength and fitness
• improve posture
• improve your sense of your body's position and movement (proprioception)
• correct the movement of individual joints

It helps to see a physiotherapist who knows about hEDS or HSD, because some physiotherapy treatments can make symptoms worse.

Many different physiotherapy techniques can be used. You may be advised to follow an exercise programme that includes:

• strength and balance training
• special stretching techniques
• advice about pacing

Pacing means balancing periods of activity with periods of rest. You don't overdo things or push yourself beyond your limits. If you push yourself too hard, you could slow your long-term progress.

Occupational therapy helps you deal with the difficulties that hEDS or HSD can cause in your everyday life.

This may mean learning other ways of doing a certain task. For example, an occupational therapist can give you advice about:

• reducing the strain on your joints while using a computer
• getting dressed
• ways to adapt your home so moving around is easier, for instance if using stairs is a problem

You may also be able to get equipment that makes some tasks easier. Special grips, for example, can make a pen easier to hold and help improve your handwriting.

Flat feet can be a problem for some people with hEDS or HSD. With flat feet, there's no arch in the inner part of the foot. That can strain the nearby muscles and ligaments (the tissue that connects bones together at a joint).

If you have problems with your feet, a podiatrist (a foot specialist) can recommend footwear for indoors and outdoors. Shoes like these support the arches of the foot and can help with foot, knee, hip and back pain. The podiatrist can also suggest insoles if you need them.

Medicine can be used to manage the pain that comes with hEDS or HSD.

Painkillers you can buy over the counter at a pharmacy, like paracetamol, can sometimes help. Your doctor can also prescribe a medicine that contains both paracetamol and codeine, which is a stronger type of painkiller. For children with hEDS or HSD, liquid paracetamol (like Calpol) may help.

Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen may help in some cases.

You can also get painkillers and NSAIDs as gels or sprays, which go directly onto painful joints.

Always read the patient information leaflet that comes with over-the-counter medicine. That way you can be sure it's suitable for you before you take it.

Some people with hEDS or HSD find that pain medicine doesn't work for them.

Some have also said that local anaesthetic had no effect on them. If you're having a procedure that needs local anaesthetic, you may want to talk this over with your doctor or dentist beforehand.

If you have joint hypermobility and painkillers aren't reducing your pain, you may benefit from being referred to a pain specialist at a pain clinic. The staff there can give you further advice and treatment.

Some people with hEDS or HSD, for example, benefit from cognitive behavioural therapy (CBT). It's a pain management programme, and it may help when painkillers are not working.

Pain specialists may also give you stronger medicine used to treat nerve (neuropathic) pain. These drugs should only be continued if there are clear benefits.

This type of pain is often called chronic pain.