Information alert

If you need a large print, audio, braille, easy-read, age-friendly or translated copy of this page, email the patient information team at uclh.patientinformation@nhs.net. We will do our best to meet your needs.

Introduction

Fatigue is a common and invisible symptom that is not always obvious to others such as partners, family members, friends or colleagues. As a result others may not understand the symptom and it may be misinterpreted as laziness or malingering.

Fatigue is different for everyone; even in the same individual it can vary from one day to the next, or even within the same day. This unpredictability can be extremely frustrating.

Fatigue affects physical, cognitive (mental), psychological and social aspects of life.

It is important that significant others in your life are aware that fatigue is a very real and common symptom for neurological condition. Talk to your friends, family and work colleagues and explain what it means for you to be fatigued.

Managing fatigue requires a coordinated approach that engages the involvement of family members and friends. It is important for relatives, friends and employers to understand your fatigue patterns and the principles you are following to manage your fatigue. This understanding will enable them to support you in making adjustments to your lifestyle.

Fatigue management is about learning skills and strategies to manage fatigue symptoms and reduce its impact on quality of life.

What is fatigue?

Fatigue associated with neurological conditions including Cerebral Palsy (CP) is different from ‘normal’ tiredness. Many people describe it as being an overwhelming sense of exhaustion and lack of energy completely out of proportion to the activities they are performing.

People without a neurological condition who experience short-term fatigue generally find that it does not stop them from doing what they need to do. In contrast, most individuals with a neurological condition and fatigue find that at times they cannot meet their family, work or social responsibilities because of fatigue.

The causes of fatigue in neurological conditions are complicated and are still under investigation. Fatigue is likely to result from a combination of several factors that sometimes interact.

Primary fatigue

Primary fatigue is caused directly by the neurological condition. Reasons for this are not fully understood, but it is thought to be due to the nervous system having to work harder to send messages from the brain to the body.

Secondary fatigue

This is fatigue that is not directly caused by a neurological condition itself but by other factors, some of which may be a consequence of living with a neurological condition.

Factors that contribute to fatigue

Sleep difficulties

Problems falling asleep, staying asleep or getting the right kind of sleep can prevent people from feeling refreshed when they wake up. This is often due to factors that can be alleviated or lessened, for example spasms, pain, bladder issues, poor sleep routines, depression or anxiety.

Depression/low mood

Low mood can affect motivation and lead to lethargy. Similarly, feeling fatigued all the time can make a person feel low. However, feeling in a good mood and doing activities you enjoy can sometimes make fatigue more tolerable. If you think you may be depressed, it is very important that you do something about it. Talk to your CP team or GP. Depression can be helped by talking therapies, exercise and medication, alone or in combination.

Anxiety and stress

Stress can make anyone tired, and dealing with a neurological condition can make life more stressful. A vicious cycle can be created, with fatigue causing stress and stress increasing fatigue.

Other medical conditions

Other more common medical conditions, such as infections, anaemia, thyroid problems, heart conditions, lung disease and so on, can also cause fatigue. Talk to your doctor to make sure you don’t have other medical issues contributing to your fatigue.

Pain

Pain related to a neurological condition, such as spasticity, can make an individual less likely to want to take part in physical activity and can contribute to deconditioning. Also pain can make sleep difficult, leaving people with less energy to cope with fatigue. Talk to your CP team if you are finding that pain is interfering with your daily activities and sleep.

Physical deconditioning

Reduced physical activity can lead to the cardiovascular system and the muscles themselves becoming ‘out of shape’ or ‘deconditioned’. Like anyone else who is out of shape, physical activity then becomes more demanding and fatiguing. If a person’s mobility and/or coordination are affected by a neurological condition, the increased effort needed by the body to carry out everyday activities can result in greater fatigue.

Nutrition

Eating a poorly balanced diet can contribute to low levels of energy.

Infections

Infection can exacerbate some of your neurological symptoms.

Medications

Some medications used to treat symptoms of neurological conditions, such as spasticity and pain, or other medical conditions may have side effects that include drowsiness or tiredness. If you notice there is a relationship between a change in your fatigue levels and a change in medication, talk to your CP team.

Your surroundings

The lighting and temperature within a home or work area are important as poor lighting increases visual effort and heat frequently makes fatigue worse. It is also important to consider the distances and number of stairs that are covered within a typical day.

Shared learning

Talking to others with similar issues and shared experience can really help.

Charities

Scope: https://www.scope.org.uk

Adult CP Hub: www.adultcphub.org

CP Sport: http://www.cpsport.org/

The CP team run an online fatigue group called ‘Managing Fatigue in Adults with Cerebral Palsy’. The group is run over three weeks and lasts for approximately one hour each week.

Please let the team know if this is something that you are interested in and we can provide you with further information.

Acknowledgements

FACETS programme: Written by Sarah Thomas, Peter W Thomas, Alison Nock, Vicky Slingsby, Roger Baker and Charles Hillier and funded by the MS Society.

Direct contact number: 0203 448 3439

Email: uclh.cpteam@nhs.net

If you need a large print, audio, braille, easy read, age-friendly or translated copy of this document, please contact us on 0203 4483 510. We will try our best to meet your needs.

AdultCPhub to the ADULT Cerebral Palsy Movement: UPMovement. Home - UP (upmovement.org.uk)


Page last updated: 14 May 2024

Review due: 30 November 2024