Pain is one of the most common problems for adults with CP, along with fatigue. These two problems impact each other and can worsen other symptoms. Pain can substantially affect your quality of life and managing it is often an ongoing process. 

Studies have found that pain increases as adults with CP get older and this has an effect on how well they can participate in activities. Other symptoms that have an impact include changes in muscle flexibility, arthritis, falls, fractures and the risk of osteoporosis. These can make pain and fatigue worse, and vice versa.

When pain is well managed, you can focus better on other aspects of your life, including study, work, relationships and socialising. It will also have other benefits, such as making physical therapies easier and activities more enjoyable.

Causes of pain for adults with CP can include:

• painful joints or spinal deformity (scoliosis)
• increased muscle tone, spasticity (tight or stiff muscles), or dystonia (involuntary muscle contractions)
• gastrointestinal pain, such as reflux, incontinence or constipation
• routine activities, such as being lifted or daily assisted stretching
• pain caused by medical procedures
• dental pain.

If you are in pain, talk to your healthcare team about getting an assessment to work out what is causing your pain. The team can then develop a plan to manage it, which may include referral to a specialist or allied health professional.

Adults with CP who have difficulty communicating, have an intellectual disability or need help with mobility can have trouble accessing health professionals and may find that communicating about their pain is difficult.

If you are supporting an adult with CP, it is important that you help them to access the right healthcare when they are having trouble. Being able to share what you know of the person’s pain levels, causes of pain and expressions of pain with the healthcare team makes the assessment process much easier.

Often, pain can be managed with physiotherapy and occupational therapy, using exercises that are designed to improve a child or young person’s ability to move. Active range of motion exercises have positive outcomes for pain management. Orthotic devices or adaptive equipment may be used to help stabilise limbs that are painful.

The management of pain can also include:

• different types of medications – pain relief, muscle relaxants or anti-inflammatory medication
• warmth, such as warm baths
• cold, such as ice packs
• massage to help relieve tense muscles and increase mobility
• stretching, which sometimes requires someone to help.

Sometimes a treatment, such as stretching, is uncomfortable, but the end result is positive and leads to feeling more relaxed and comfortable. It is important that your healthcare team checks there is a worthwhile outcome at the end of any therapy session.