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Fatigue is a persistent feeling of being tired, weak, worn out, slow or heavy. It's one of the the most common side-effects of brain tumours and brain tumour treatments.
Three in five people we spoke to reported feeling fatigued as a result of their brain tumour diagnosis. Of these people, 40% said they were severely affected by fatigue.
Although not everyone living with a brain tumour will experience fatigue, it can affect people with all types and grades of tumour.
You may find that fatigue affects you in very different ways to others. For some, it's relatively mild but many others have described it as one of the most disruptive side-effects they experience.
Fatigue caused by a brain tumour can have a huge impact on your quality of life because, unlike everyday tiredness, it isn't relieved by resting or sleep.
While there is no cure for fatigue, it's important to know that it can be managed and 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.
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, it's been described as a continuing, debilitating sense of weariness throughout the whole body.
Tumour-related fatigue can:
Tumour-related fatigue cannot:
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:
It's important to note that 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.
You are unlikely to experience all of these, but common symptoms include:
The exact cause of fatigue is not known, but there are several things that could contribute to it:
The development, growth and progression 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.
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, attention/concentration and planning and organising, as it can deplete the energy required for these. As such, a vicious circle is created.
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.
Having seizures and being diagnosed with epilepsy on top of the diagnosis of a brain tumour can also be overwhelming. You may feel frightened, worried, anxious, depressed, angry - all of which can add to your fatigue.
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 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", otherwise known as "active monitoring".
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 fewer calories than you burn, it can leave you feeling very tired or fatigued.
Dehydration happens when you don't have enough fluids in your body. This can be caused by being sick and not drinking or eating enough.
As well as losing fluids, 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 can lead to tiredness. It can also lead to feeling or being sick, which means a further loss of fluids and electrolytes - 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.
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.
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