Improving Brain Tumour Care surveys share your experiences and help create change

Fatigue and tiredness with brain tumours

3 in 5 people we spoke to reported feeling fatigued as a result of their brain tumour diagnosis. And, 1 in 4 said they were severely affected by fatigue.

Although it’s important to remember that not everyone living with a brain tumour will experience fatigue, it can affect people with all types and grades of tumour.

For those that do, the symptoms and severity can differ from person to person, so you may not have the same problems as someone with a similar diagnosis and treatment plan.

Many carers also experience fatigue. This can be due to extra worry and stress, the added physical activity involved in being a carer and a lack of sleep.

What is fatigue?

Fatigue is a persistent feeling of being tired, weak, worn out, slow or heavy. 

For some, it’s relatively mild but many others have described it as one of the most disruptive side-effects they experience – a continuing, debilitating sense of weariness throughout the whole body.

Although cancer-related fatigue is widely talked about, fatigue in people living with low grade  and non-cancerous brain tumours often goes unacknowledged.

Fatigue can:

  • vary in intensity at different times of the day and from one day to the next
  • disrupt your sleeping patterns.

Fatigue can’t:

  • be seen by others, making it difficult for them to understand how it’s affecting you 
  • be relieved by resting or sleeping, meaning it can have a huge impact on your quality of life.

Unsurprisingly, this often leads to a lot of additional stress, which in turn causes increased levels of fatigue. This vicious cycle can profoundly affect your personal, social and working life, resulting in:

  • anxiety
  • depression
  • relationship troubles

Back to the top

  • social isolation
  • difficulties at work
  • financial problems.

Track your journey with BRIAN

BRIAN’s quality-of-life tracker lets you monitor how you’ve been feeling and better understand your ups and downs. You can then share this with your loved ones and healthcare team to show them how they can best support you.

What are the symptoms of fatigue?

You are unlikely to experience all of these, but common symptoms include:

  • lack of or reduced energy or motivation
  • over-sleeping or difficulty sleeping
  • aching muscles or feeling exhausted after small tasks
  • difficulty concentrating
  • losing interest in things you usually enjoy
  • irritability
  • feeling anxious or depressed
  • negative feelings about yourself and others
  • difficulty making decisions or thinking clearly.

I think I have a brain tumour, what should I do?

Brain tumours are rare, however, if you’re worried and a symptom persists or if you have more than one symptom of a brain tumour then:

  • Talk to your doctor
    GP appointments are usually quite short, so make sure you find out how to best prepare for your appointment.
  • Get an eye test
    If your symptoms are limited to changes in vision and/or headaches, get your eyes tested by an optician before seeing your GP.
  • Go to A&E
    If the symptoms are sudden or severe, you should go to your emergency department or call 999.

Should I speak to a doctor during the coronavirus pandemic?

We understand you may feel worried about seeking help from your GP during the coronavirus pandemic – but please don’t delay speaking to a healthcare professional.

The NHS and your GP are still here for you and have made changes that make it easier to safely speak to a healthcare professional and get medical help if you need it.

It’s more important than ever for you to prepare for your appointments by understanding what might happen during the appointment and what questions you want to ask.

Back to the top

Heather Dearie, who was diagnosed with an acoustic neuroma in 2010 and experiences fatigue

Simple things I took for granted, like brushing my teeth, having a cup of tea, or even texting, left me so tired it felt like I’d run a marathon.

Heather Dearie

What causes fatigue?

The exact cause of fatigue is not known, but there are several things that could contribute to it. 

The tumour itself

The development, growth and progression of a tumour and the body’s response to it, involves the destruction of tumour cells and the repairing of tissue, which requires much energy. Your body is working harder, diverting energy normally used on everyday living to fight the tumour.

Treatment

The side-effects of surgery, radiotherapy, chemotherapy and medications, such as steroids and anti-epileptic drugs can all include fatigue.

This is because your body needs to divert energy to repair changes in body chemistry or damage to healthy tissue that some treatments can cause.

Most people improve over the year following treatment, but rarely, some people can develop fatigue years after their treatment.

Side-effects of treatment

Cognitive difficulties

Cognitive difficulties, such as difficulty in concentrating, remembering things or solving problems, is common in people with brain tumours.

Trying to overcome them can be extremely fatiguing, which then drains you of the energy required for cognitive functions.

In turn, fatigue is well known to cause cognitive impairment, particularly with memory, concentration and planning and organising, as it can deplete the energy required for these. As such, a vicious circle is created.

Seizures

Around 3 in 5 people living with a brain tumour will experience at least one seizure and this is more likely for those living with a low grade tumour.

Feeling tired or exhausted after having a seizure is extremely common and fatigue can be worsened by the emotional impact of experiencing a seizure.

Having seizures and being diagnosed with epilepsy on top of the diagnosis of a brain tumour can also be overwhelming emotionally and add to your fatigue.

Stress, anxiety and depression

Living with any grade of brain tumour can cause a huge amount of stress, anxiety or depression. These emotions use a lot of energy and can affect your quality of sleep, leading to feeling more fatigued.

Dealing with your diagnosis and any uncertainty about the future can also leave you feeling physically and mentally exhausted. This is particularly common in people with low grade tumours that are on watch and wait, otherwise known as active monitoring.

Diet and dehydration

Treatments can affect your taste, appetite or digestion and cause vomiting, making it harder to eat the balanced diet needed to aid your recovery. If you’re taking in fewer calories than you burn, it can leave you feeling very tired or fatigued.

If you’re dehydrated, you’ll also become fatigued which is why it’s so important to drink plenty of fluids, especially if you’re vomiting or not eating a balanced diet.

Pain

Some people living with a brain tumour experience pain on a daily basis, such as headaches. Dealing with it day to day can wear you down, causing fatigue.

Being fatigued, in turn, can make it more difficult to cope with and manage pain.

Cytokines

Cytokines are proteins that are made by the cells involved in the immune system, and are produced in response to injury or infection. There is evidence that the levels of cytokines are higher in some tumour patients, possibly due to the body fighting the tumour.

It’s thought that the higher than normal levels of cytokines could cause fatigue by affecting hormones and chemicals that nerve cells use to communicate.

More research is needed to find out exactly how these increased levels cause fatigue.

Back to the top

Our experienced Benefits and Money Advisor providing advice over the phone to someone affected by a brain tumour

Expert benefits & money advice

Last year our free Benefits and Money Clinic helped 178 members of our community claim over £450,000!

Coping with fatigue

While there is no cure for fatigue, it’s important to know that it can be managed and many people improve within 6 months to a year after treatment.

Your healthcare team may be able to help with some of the treatable elements of fatigue, for example pain or depression. They may refer you to a specialist for treatment, for example a mental health practitioner or complementary therapist.

We’ve gathered many tips about coping with fatigue from people living with a brain tumour and healthcare professionals.

Find out more

Back to the top


Tips from our community

“My partner copes best when they set themself small, manageable goals for the day.”

“I just listen to my body. When it has energy, I try and get things done – even if it’s late at night. And when I don’t have any energy, I rest.”

“I have a low grade tumour and I get frequent spells of fatigue that can happen at anytime. I find trying to fight it is counterproductive and resting is the best thing I can do.”

“There is no quick fix, but a walk in fresh air can help in the hardest times. Even if it’s only for 5 minutes at a time.”

Join one of our our Online Support Communities for more tips about coping with a brain tumour diagnosis, from people who truly understand what you’re going through.

Find out more


Download our fatigue factsheet

Fatigue factsheet – PDF

Find out more about fatigue and brain tumours in the full fact sheet.


If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
Support and Information Services
0808 800 0004 Free from landlines and mobiles
Phone lines open Mon-Fri, 09:00-17:00
Check the signs and symptoms of a brain tumour

Know the Signs and Symptoms

Although brain tumours are rare, if you or a loved one are experiencing two or more of the signs and symptoms it’s important that you speak to your doctor to rule out a brain tumour.

A member of our Support & Information Team provides support over the phone to somebody affected by a brain tumour diagnosis

Get support

If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.

Since I’ve had the tumour, I get really tired, even though they took it all out. I also get quite emotional. I’ll cry at things really easily – even something silly like if I drop my coat.

Alfie (age 9)
Angela holds her adorable puppy as she talks directly to the camera about the importance of asking for help if you're struggling with fatigue caused by a brain tumour diagnosis.

Why it’s important to seek help when you’re suffering from fatigue

Angela explains why it’s worth visiting your GP, even if you think there’s nothing that can be done for your fatigue.

Share your experiences and help create change

By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.