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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.
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.
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:
Living with the effects of a brain tumour and its treatment can be physically and mentally exhausting. Use BRIAN’s quality-of-life tracker to see which of your daily patterns or habits tend to make you fatigued and find a way to prioritise and pace your activities.
BRIAN is our trusted online app where you can track your experience, compare it with others who’ve been there and get the knowledge you need to make informed decisions.
You are unlikely to experience all of these, but common symptoms include:
"My diagnosis didn't have much impact initially on my energy levels, but after two brain surgeries the fatigue hit me full force - I'd never known exhaustion like it!
"I used to force myself to stay awake and keep moving - at my age it didn’t feel like I should have to sleep during the day. But since then, even though things have got better, I've stopped being so stubborn. When it feels like my body is heavy and I'm wading through water, I give in, and now power nap most afternoons and some evenings.
"I’ve found that Vitamin B helps a little, as do coffee and tea in moderation, and bananas for a quick pick-me-up when I hit an afternoon slump but can’t nap.
"If you’re struggling with fatigue, listen to your body. Don’t feel guilty about needing to rest or sleep. It’s not your fault - it’s the unwanted guest in your brain.
"When you have a brain tumour, everything’s more tiring than it used to be. Half the battle is coming to terms with that and accepting you can't do things the way you used to."
Join one of our Online Support Communities for more stories and tips about coping with a brain tumour diagnosis from people who know what you're going through.
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 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.
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.
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.
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.
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.
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.
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 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.
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.
"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.
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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