What is the problem?

As many as 75% of adults with Cerebral Palsy suffer from chronic pain, affecting so many aspects of how you live your life, as well as your mental wellbeing. It can also make other challenges, such as fatigue or poor sleep, even worse.

Pain may be related to your CP or because of other persistent conditions (e.g., constipation). It is important to understand what is causing the pain in order that the correct pain management can be thought about.

A more technical explanation of the pain is that it may be caused by unusual stress on muscles, bones, and joints. More generalised pain may be associated with fibromyalgia, or neuropathic pain.

Common causes of Pain in Cerebral Palsy

There are different reasons that we experience pain, resulting in different types of pain

  • Musculoskeletal pain – Pain emerging from muscles, joints and the skeleton can be localised in the back, neck, foot/ankle, shoulder, knee, hip and arm. Individuals increased muscle tone, spasticity or dystonia are common causes of pain. Using mobility aids can also result in repetitive use injuries or pain from sore or imbalanced muscles.
  • Neuropathic pain can cause more generalised pain.
  • Arthritis – Cerebral palsy can impact on the development and function of muscles, bones and joints. This can put unusual pressure and stresses on the joints and on the spine. These changes can lead to early onset osteoarthritis or scoliosis with associated pain.
  • Constipation – Difficulties
  • Gastro-intestinal pain often caused by gastro-esophageal reflux as can problems with gastrostomy (PEGS)
  • Dental pain, caused by difficulties in maintaining good oral hygiene or gastro-esophageal reflux (causing erosions to the dental enamel and secondary caries)
  • Activities of daily living such as getting dressed, being lifted and daily assisted stretching can be painful

How do we manage it?

It is important that you keep a record of your pain, sleep quality, and daily activities. If you notice changes, you should let your doctor know. Your doctor can check and find out the cause of your pain. Your doctor may also be able to refer you to a pain management service

Pain Management for Individuals with Cerebral Palsy

Managing pain is a good thing on its own, and it can also lead to better sleep, improved function, and better mood. Depending on the cause of your pain the treatment will vary.

There are several different classes of oral drugs that can be used to alleviate pain but it is important to understand the type of pain you have so that the correct pain relief can be prescribed. E.g. managing increased muscle tone using oral medications or botulinum toxin.

Non-pharmacological treatments can be helpful, such as a warm bath or cold as an ice pack. Sometimes, massage can help relieve tense muscles.

For musculoskeletal pain regular exercise is the key to strength and will often reduce pain.

Don’t forget that adults living with Cerebral Palsy might, like any other person, have problems with headache, period pain and other commonly encountered causes of pain and can be managed in the usual way with regular analgesia or other non-medical intervention. It is important that pain is managed because underlying pain can exacerbate your symptoms.

Before you have any major surgery or procedures it is important to have a pain-management plan ready to go. This will help make sure you are comfortable after your procedure and able to recover well.

  • Try to keep moving and find what movements that ease your pain.
  • Ensure that you have the correct equipment to support your seating and posture
  • Explore activities to relax your mind and body (e.g. enjoy the outdoors, mindfulness, creative activities)
  • Think about ways to relax your muscles e.g. swimming, stretching, massage
  • Practice good sleep hygiene

Rest and Sleep:

The amount of rest you get, and the quality of your sleep will have a direct Impact on your levels of energy.

  • Directly tackle the reason that you might not be having good sleep e.g pain, positioning.
  • Employ good sleep hygiene.
  • Employ the pacing techniques that help you best manage your day.
  • Think about your energy consumption over a week.
  • Consider what activities you want to take part in and how best to prepare for them. For some, it might be about clearing your diary before the event to make sure that your energy levels are optimum. For others, it will be important to have ample recovery time and for some things you will need both. Learn what works for you.


Chatting with Dr Charlie Fairhurst & Susie Turner on Pain

This covers:

  • Why understanding pain is important
  • What is pain and how it is received by someone with Cerebral Palsy
  • The what and why of pain
  • Cause of pain in Cerebral Palsy
  • Knowledge translation – studies and NICE
  • How to deal with different types of pain

Scarlett Murray is a 22 year-old mother of one, and a talented writer who blogs about her experiences of living with Cerebral Palsy. Her form of CP is left-sided hemiphlegia. She tells us her story.

Read more
Young woman with little girl (Scarlett Murray and daughter)

Clive Gilbert is a leading policy expert on assistive technology for disabled people, drawing in part, on his own experiences living with Cerebral Palsy. He tells us his story.

Read more
Man using assistive technology (Clive Gilbert)