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Fatigue and tiredness with brain tumours

Fatigue is a persistent feeling of being tired, weak, worn out, slow or heavy. It's the most common side-effect of brain tumours and brain cancer.

Three in five people we spoke to reported feeling fatigued as a result of their brain tumour diagnosis. Not everyone living with a brain tumour will experience it and fatigue may affect you in very different ways to others.

For some, it will be relatively mild but any others have described it as one of the most disruptive side-effects they experience. Tumour-related fatigue can have a huge impact on quality and way of life because, unlike everyday tiredness, it isn't relieved by resting or sleep.

Coping with fatigue

While there is no cure for fatigue, many people improve within six months to a year after treatment.

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

You could also lesson the impact of brain tumour-related fatigue using some of our tips for coping with fatigue.

What is tumour-related fatigue?

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

Not everyone with a brain tumour will experience fatigue but it can affect anybody with any grade of tumour. The severity will often differ from person to person has been described as a continuing, debilitating sense of weariness throughout the whole body.

Tumour-related fatigue can:

  • vary from person to person
  • vary in intensity at different times of the day and from one day to the next
  • disrupt your sleeping patterns
  • negatively affect your emotions and causing extra anxiety.

Tumour-related fatigue cannot:

  • be seen by others, making it difficult for them to understand how it's affecting you 
  • be relived by resting or sleeping.

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:

What are the symptoms of fatigue?

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

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

Why am I getting fatigued?

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

The tumour itself

The growth of a tumour (any grade) 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.

Your treatment

The side-effects of surgery, radiotherapy, chemotherapy and medications, such as steroids and anti-epileptic drugs can all include fatigue. Your body needs to divert energy to repair changes in body chemistry or damage to healthy tissue that some treatments can cause.

Cognitive effects of brain tumours

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.

Seizures

Around 60% of people with a brain tumour will experience a seizure at least once 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.

Stress, anxiety and depression

Living with any grade of brain tumour can cause a huge amount of stress, anxiety or depression. These conditions take up a lot of energy and affect your quality of sleep, leading to increased fatigue.

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'.

Diet

Treatments can affect your taste, appetite or digestion, making it difficult to eat the balanced diet needed to aid your recovery. If you are taking in less calories than you burn, it can leave you feeling very tired.

Dehydration

Dehydration (not enough fluids in your body) can be caused by being sick (vomiting) or not drinking or eating enough. Dehydration causes a change in salts and minerals in the body called electrolytes, which are important in controlling fluid balance. This can make you feel tired.

Dehydration, in turn, can make you vomit, causing a further loss of fluids and electrolytes and making you feel more tired.

Pain

Dealing with continual pain, such as headaches, can wear you down, causing fatigue. Being fatigued, in turn, can make it more difficult to cope with and manage pain. Another vicious circle.

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 is 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.

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)

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.

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:

Information and Support line

0808 800 0004 (free from landlines and mobiles)

support@thebraintumourcharity.org

Phone lines open Mon-Fri, 09:00-17:00

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