CP and pain
Pain is a very common problem among people with CP. It can have a significant impact on well-being, physical activity, and quality of life, but it can be treated and relieved in several ways.
People with CP may experience daily or recurring pain. It typically arises from muscle tension, overuse, or wear and tear in the joints and back. Pain can change over time and affect everything from sleep and energy levels to participation in school, work, and social life.
Pain is the body’s way of signalling that something is wrong. Pain is not dangerous in itself, but it is a signal that should be taken seriously rather than simply suppressed with medication. Preventing pain is important, as it can affect both well-being and the ability to cope with everyday activities. For that reason, it is important to pay attention to even small signs of pain, such as changes in behaviour, restlessness, or fatigue.
With the right knowledge, treatment, and support, it is possible to relieve pain in both children and adults with CP and improve well-being in everyday life.
How does pain arise?
Pain occurs when specialised nerve endings (nociceptors) detect tissue damage or irritation and send signals through the nerves to the spinal cord and brain. The brain interprets these signals as pain - an important warning system that protects us from further injury.
How does pain present?
Pain is experienced differently from person to person. This can make it difficult to detect and assess the severity of the pain. Children in particular often find it difficult to put pain into words (see “Children and pain” below).
Pain may present as increased fatigue, reduced appetite, or physical and mental exhaustion. For some people, pain can become so dominant that it affects sleep, mood, and the energy needed to take part in activities. It is therefore important to pay attention to physical, behavioural, and emotional changes to help identify the underlying cause.
There are three types of pain:
- Acute pain is short-term and typically occurs as a result of injury or overuse. It has a clear biological function: to prompt us to react and protect the body.
- Chronic pain lasts for weeks or months and is often caused by prolonged strain, muscle tension, or changes in the nervous system, where pain signals become overactive.
- Referred pain is pain that originates in internal organs but is felt in the skin or muscles elsewhere in the body because the nervous system “mixes” the signals. For example, neck tension can cause headaches, or a pinched nerve in the lower back can cause pain radiating down the leg. When a child complains of pain in a specific part of the body, it is important to remember that the pain is not always felt where it originates.
The most common causes of pain in CP
As in the general population, not everyone with CP experiences pain, while others live with pain that may change in nature over time. Pain can arise for many different reasons, and both its location and intensity can vary from person to person. Strain on muscles, joints, or the nervous system can lead to both acute and long-term pain.
Common causes of pain in people with CP include:
- Muscle and joint problems
Overuse, misalignment, contractures (tight and shortened muscles), and hips that are partially or fully dislocated can cause discomfort both at rest and during activity. - Spasticity, dystonia, and muscle spasms
In spastic CP, the muscles are stiff and may contract forcefully in spasms or cramps. Dystonia involves involuntary, sustained, or repetitive muscle contractions. These involuntary movements can be very painful. - Osteoarthritis and joint irritation
Constant muscle tension and abnormal strain can wear down the joints and lead to irritation and pain. - Orthoses (braces), casts, exercise, and surgery
Physiotherapy, injections (e.g. Botox), the use of braces, and previous surgeries can cause both short- and long-term pain. - Gastrointestinal problems
Constipation and other digestive problems are often overlooked but are common causes of pain. - Headaches, back pain, and infections
Like anyone else, people with CP may experience headaches, back problems, and pain caused by infections. - Nerve pain
Nerve pain can occur when a nerve is under pressure or not functioning properly.
What can you do to relieve pain?
It is generally better to prevent pain than to treat it, as pain - even over short periods - can negatively affect well-being and the body’s ability to function.
When treatment is necessary, it should not only focus on relieving symptoms. It is important to identify and address the underlying cause of the pain so that the child or adult does not continue to experience pain. If you are in pain, you should always consult a doctor to determine the cause.
Doctors, physiotherapists, and occupational therapists can help assess the causes of pain and, for example, adjust exercise programmes, braces, and medication. Share your observations with professionals - even small details can make a big difference.
Many types of pain can also be prevented through changes in daily routines. By responding early to changes, it is often possible to reduce both discomfort and the risk of long-term pain.
A holistic approach that considers physical, psychological, and environmental factors offers the best opportunity to reduce pain and improve quality of life.
Advice on preventing and relieving pain:
- Stay active every day
Engage in regular physical activity to reduce stiffness and prevent tight muscles and contractures. - Prevent overuse
Plan breaks and vary daily activities, change position frequently, and use assistive devices that reduce strain on the body. - Ensure good posture and support
Maintain proper positioning in chairs, wheelchairs, and beds. Use cushions or specialised equipment to avoid pressure and strain. - Adjust assistive devices
Check that assistive devices, braces, and shoes fit properly and do not cause pressure or friction. - Prevent constipation and digestive problems
Eat a fibre-rich diet, drink plenty of fluids, and maintain regular bowel movements. Consult a doctor if there are signs of constipation or reflux (in children). - Createa sense of security and structure
Predictability and calm routines can reduce muscle tension and stress, which often worsen pain. - Be mindful when using medication
Some people with CP require medication for spasticity or pain. Follow medical advice and be aware of possible side effects. - Use heat, cold, and massage
Depending on the nature of the pain, an ice pack, heating pad, or gentle massage may provide relief. Ask a professional what is most appropriate for you or your child. - Respond early to changes
Contact a healthcare professional if there are sudden changes in pain, activity levels, or overall condition.
Children and pain
How can you recognise pain in children?
Children may show pain in many different ways. Because children may find it difficult to put pain into words, it can be helpful to observe their behaviour. Pay particular attention to changes such as restlessness, fatigue, or changes in the way they move. This makes it easier to recognise pain and seek help early.
Signs of pain in children:
- Facial expressions: furrowed brow, tightly closed eyes, tense mouth.
- Crying or vocal sounds:
groaning, whimpering, or screaming without a clear cause. - Body tension: stiff arms or legs, drawing legs up towards the stomach, or protecting a specific area of the body.
- Restlessness:
frequently changing position, rocking back and forth. - Behavioural changes: seeming sad, playing less, or interacting less with others.
- Sleep and appetite: sleeping poorly or eating less.
- Physical signs:
fast breathing, sweating, or flushed skin.
What can you do as a parent?
In children with CP, discomfort may appear in different ways. Fatigue, feeling unwell, overstimulation, or exhaustion may be signs of underlying pain that the child struggles to describe. For many children, “It hurts” may be the simplest way for them to express that something feels wrong.
That’s why it’s important for parents to be attentive and try to understand what the child is really communicating. When we see pain as a signal rather than just a symptom, we are better able to help by exploring possible causes and adjusting support, activities, or rest breaks. Listening to and interpreting these signals is a central part of creating a sense of security and calm for the child.
Advice for parents:
- Listen and take the signal seriously - even if you are unsure.
- Ask open, calm questions about the pain: “Are you tired, or does something hurt?”
- Provide rest and quiet time if the child seems overstimulated.
- Use picture cards or a simple pain scale if the child has difficulty explaining.
- Note the timing and context of symptoms: Do they occur during meals, activity, therapy, or rest?
- Seek professional help if pain is frequent or difficult to understand.
Where can you seek help?
If you or your child is experiencing pain, contact your GP or the doctor responsible for your child’s care at the outpatient clinic. The doctor can assess the pain and refer you to other professionals if necessary. Hospitals and specialised pain clinics can offer more targeted assessment and treatment.
If you are under 18, you can also receive support through CPOP (the Cerebral Palsy Follow-Up Programme), where professionals monitor development over time and provide guidance on the prevention and treatment of pain. Many people also benefit from advice from physiotherapists, occupational therapists, or other specialists with expertise in CP and pain.
If you are unsure how to prevent pain, you are welcome to contact the Elsass Foundation to find out whether we offer a service or activity that may help in your situation.