Living with fatigue
Bella was diagnosed with an astrocytoma in 2007. Watch the video about her experiences with fatigue and how she learned to cope with its effects.
Fatigue and tiredness with brain tumours
Fatigue - a persistent feeling of being tired, weak, worn out, slow or heavy - is the most common side effect of brain tumours and brain cancer.
Learn more about symptoms of fatigue and get tips and advice on how to cope:
What is tumour-related fatigue?
Tumour-related fatigue differs from 'ordinary' fatigue in that it is not relieved by resting or sleep.
'Cancer-related fatigue' is often talked about, but less acknowledged is that people with 'non-cancerous' (low grade) brain tumours also experience fatigue.
Not everyone with a brain tumour will experience fatigue and those that do will experience it differently – from mild, with little impact, to very disruptive to their quality and way of life.
Tumour-related fatigue (from all grades of tumour) has been described as a continuing, debilitating sense of whole body weariness. It:
- Varies from person to person
- Can vary in intensity from day to day or throughout the day
- Can affect your sleeping patterns, making you more fatigued
- Can negatively affect how you feel emotionally, causing stress and consequently more fatigue
- Cannot be seen – making it difficult for others to understand how it feels or how bad it is, causing added stress and therefore added fatigue
Fatigue can profoundly affect your personal, social and working life, leading to difficulties in relationships, social isolation and loss or reduction in employment. This can cause financial difficulties, extra stress and more fatigue.
What are the symptoms of fatigue?
You are unlikely to experience all of these, but common symptoms include:
- Lack of energy (you want to stay in bed all day)
- Over-sleeping or difficulty sleeping
- Aching muscles (e.g. when climbing stairs or walking even short distances)
- Feeling exhausted after small tasks (e.g. taking a shower or making your bed)
- Difficulty concentrating (e.g. on watching television or chatting to a friend)
- 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 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 impairment', 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. Then being fatigued drains the energy required for cognitive functions, and so a vicious circle is created.
Around 60% of people with a brain tumour will experience a seizure at least once. You are more likely to have seizures if you have a low grade tumour. Common symptoms after a seizure include feeling tired or exhausted. You may sleep for minutes or hours.
Having seizures, and being diagnosed with epilepsy and a brain tumour, can be overwhelming. The mixture of emotions you may feel can add to your fatigue.
Read more about epilepsy and seizures.
Living with any grade of brain tumour can cause a huge amount of stress and anxiety, or depression. Dealing with the diagnosis and uncertainty, particularly if you have a low grade tumour and are on ' watch and wait', takes up a lot of energy and can leave you feeling physically and mentally exhausted. It can also affect your quality of sleep, leading to fatigue.
Read more about brain tumours and depression.
Treatments can affect your taste, appetite or digestion, making it difficult to eat the amount or variety of food needed to aid your recovery. If you are taking in less calories than you burn, it can leave you feeling very tired.
Read more about what to eat while recovering from treatment.
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.
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.
Your health team can help with elements that are treatable, such as pain, anxiety, depression, anaemia, or refer you to other specialists that can help such as counsellors, support groups, complementary therapists.
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)
support@thebraintumourcharity.org
Phone lines open Mon-Fri, 09:00-17:00
Research & Clinical Trials Information
clinicaltrials@thebraintumourcharity.org
You can also join our active online community on Facebook - find out more about our groups.