Fatigue and neurological conditions

A guide to coping with fatigue, for people affected by brain injury, brain haemorrhage, MS and other brain and spine conditions

Many people with a neurological condition experience feelings of fatigue. In this article, we explore what fatigue is like for those affected, and offer some tips on how to cope with it. We hope it will be useful, both to people who have experienced fatigue, and to their friends and family.

What is fatigue?

Fatigue is an overwhelming feeling of tiredness. It can be debilitating enough to stop you from doing everyday things like getting dressed, going to the shops or preparing food, and cannot be put right simply by sitting down and having a cup of tea. Fatigue is a subjective experience, but it has been described as "hitting a brick wall" or "like no other tiredness I've felt before".

What causes fatigue?

Fatigue is very common among people with neurological conditions. Here are some possible reasons for fatigue, although sometimes the specific cause of your fatigue may be unclear.

The healing process

Fatigue when recovering from surgery, or a sudden event like a brain injury or subarachnoid haemorrhage, is to be expected. That's because your body and brain are working hard to compensate for your injury. They are doing all the things you used to do, but also using extra energy in the healing process.

If you were very stressed or overworked before, this will also have an effect on how fatigued you feel during your recovery. As you begin to recover, the fatigue may go away or happen less often, although you may still get tired or fatigued more easily than you used to.

Lifestyle factors

Living with a neurological condition is not easy. You may need to get used to new ways of doing things, such as using public transport instead of driving, or learning to use a wheelchair. Getting used to your new way of life may be very tiring, especially at first.

You may experience sleep problems, perhaps due to pain, discomfort or bladder weakness.

Depression is often a cause of fatigue. You may, understandably, feel stressed, angry or depressed because of the changes to your life.

Some medications, such as anti-epileptic drugs or analgesics, may make you feel very tired and could contribute to an overall feeling of fatigue.

Triggers for fatigue

You may be able to work out what types of behaviour are likely to make you fatigued. For example, Pam, who had a coiling operation to treat an unruptured aneurysm, found that physical activity did not tire her out as much as mental effort: "I could spend hours doing light gardening, but put me in a crowded room for 15 minutes with a lot of conversation and the fatigue would hit me."

A note on Chronic Fatigue Syndrome

Chronic Fatigue Syndrome (CFS), also called ME or Post Viral Fatigue Syndrome, is a condition in its own right, although little is known about its causes.

This article does not cover CFS, but if you would like to find out about CFS, see the NHS Choices page on CFS or the ME Association website.

How long will I feel like this, and will it ever go away?

This is a very difficult question to answer, because everyone is different. It will depend on the nature and severity of your condition and on your lifestyle, but can still be very hard to predict.

Although we can't give a concrete answer for your own individual situation, we can tell you how some other people have felt in the months and years following their injury or first symptoms.

Erin, who had a subarachnoid haemorrhage 1 year ago during brain surgery, says: "My life is now very different. I'm still unable to work at the moment due to the left side weakness and the severe physical and mental fatigue I suffer now."

Kevin also had a subarachnoid haemorrhage 1 year ago. He says: "I returned to work 9 weeks after my coiling operation on reduced hours and was back full time after another 5 weeks. In the last year I have continued doing all the things I used to... Everyone I speak to about the operation is amazed and cannot believe that it happened as I have returned to such a normal life."

Paul, who had a fall 3 years ago and sustained a brain injury, says: "It's early days; God, how I hated it when people would say this to me, but on reflection it is still early days 3 years down the line... I get into so much trouble for doing too much because I get tired and then moody and then sent to bed, but at the time it does not matter because I am doing something useful."

Steve, who first experienced symptoms of transverse myelitis 3 years ago, says: "I now work part time and have regained my driving licence and have a Motability car with some minor adaptations. My recovery has slowed greatly but I still find small improvements and take encouragement from these."

Good days, bad days, and being realistic

There isn't a set timetable or schedule where you should expect to be feeling "back to normal" by a certain date. You might have a really good day where you feel you have lots of energy, followed by a bad day when you feel exhausted - this is absolutely normal and to be expected.

Sometimes fatigue can be caused by trying to do too much, too soon and is your body's way of telling you to slow down. You might be trying to pack too much into your life, or people might be pressuring you to get back to your "old self", even though this might be unrealistic.

It may be that the fatigue will never go away. In some cases it may get worse - for instance, if you have a progressive condition (one whose symptoms worsen over time, such as Parkinson's disease or MS). This can be hard to come to terms with and you may find it helpful to join a support group for your condition. The fatigue management tips in this article, and links at the bottom of the page, may also be helpful.

What is it like to live with fatigue?

"Fatigue is a terribly difficult thing to explain," writes Margo, who has MS, on her blog. "First, and perhaps most obviously to the outsider, it's very subjective. You can't measure fatigue like you can measure blood pressure or heart rate. It's also invisible. When someone has a broken leg, people know that person's not going to be able to do everything a fully able person might. When you look fine, but are deeply, cripplingly fatigued, it can be very hard to explain that you're not just being awkward. You're not being anti-social. You're not 'giving in' to your illness. You'd love to go shopping, to the gig, to the pub. Your body just won't co-operate."

How can I explain what it's like to others?

Because fatigue isn't something people can see, it isn't always understood by others. "People sometimes think I'm lazy or just can't be bothered," says Louise, who had a subarachnoid haemorrhage followed by viral meningitis.

So, what's the best way to explain how fatigue limits your life? One problem is that the word is already loaded with people's own understanding of the term, says Margo.

"When I was able-bodied, I talked about being fatigued. After I got hit with MS, I developed a completely new understanding of what fatigue was. If we called it something else - let's say 'banana' - we wouldn't have everyone's meanings of the word getting mixed up. 'Sorry I'm going to have to cancel on the shopping, my banana is really bad today' - how does that sound?"

Pam has found it helpful to use an analogy to explain her fatigue. "People couldn’t see anything wrong with me so assumed I was OK; they couldn’t see the fatigue and when I got fatigued I could get my words muddled," she says. "Many times people said, 'but you look so well'."

"I got round this by saying, 'If I had had an operation on my leg, you wouldn’t expect me to be running races so soon after surgery; well, my brain has had an operation and it needs to be allowed to work slower.'"

The spoon theory

One aspect of fatigue that others often don't understand is the way it limits what you can do. "As an ADEM sufferer, it's like before I could do 10 things a day, now only 1 or else I come to a standstill," says Rob, who was diagnosed with ADEM 7 years ago, and cannot work because of his fatigue.

In a blog called The Spoon Theory, a young woman explains to her friend what it's like to have a long-term condition - this may help you to illustrate to others what your fatigue is like.

The friends are in a restaurant at the time, and she grabs some spoons and hands them to her friend. The spoons each represent 1 task, or 1 thing that uses up energy. The point is that for people with a disability, there is only a limited number of spoons available to use in one day - and on some days, you will have more spoons than on others.

With just one spoon left at the end of the day, the young woman explained to her friend that "if she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely." She has learnt to plan her day and always keep a spoon in reserve, in case it's needed.

Many people with disabilities identify with the story in this blog - does it sound familiar to you?

Fatigue management tips

Fatigue management is a way of organising your life around fatigue. Even if you can't avoid fatigue altogether, you can take certain steps to minimise the disruption it can cause. Try the following:

Pace yourself. Do you find yourself suddenly exhausted after doing a few tasks, and unable to do any more? You can help to mitigate this by having frequent rests in between manageable tasks.

"I would do two hours solid then collapse for half an hour, which is really no good," says Jen, who is recovering from a subarachnoid haemorrhage and has been seeing an occupational therapist who specialises in fatigue management. "Now I'm supposed to, say, mop the kitchen then go and sit and do NOTHING for a minute (no TV, no reading, no music, just quiet), and then if I'm up to it I can hoover half the downstairs. Then sit for a minute."

Everyone is different, so it may take some experimentation before you find the amount of effort and rest that works best for you. Remember to listen to your body and learn to pick up on signs that you are doing too much.

Plan ahead.
If you have an important event coming up, plan ahead to make sure you can fit in plenty of rest beforehand. That way you are doing everything in your power to be as rested as you can for the big day. It can help to keep a diary or calendar and mark in periods of rest that you have set aside. "I have several calendars – in the kitchen, on my phone, on my laptop – and I use them to plan out my days and weeks," says Rob.

"Before I had ADEM, I would just get on with the day. Now – I can say 'I have one thing I can do today', and then I have to force myself to stop."

Prioritise - and delegate.
If there are only so many things you can achieve in a day, what are the most important? For example, you may decide that reading to your children at bedtime is more important than cooking dinner from scratch. Whatever your usual daily tasks, it can help to make a list of things that need doing, and really consider which are essential and which can be left if necessary.

Although it may be tempting to act as if everything's normal and you're on top of things, don't hesitate to ask for help from friends and family if you need it. Fatigue isn't always obvious to others, and people may not realise how difficult you are finding things unless you let them know. Next time someone says, "If there's anything I can do..." - why not take them up on their offer? You could even make a list of specific things that your loved ones could do to help. Volunteer groups in your local area may also be able to come and help you with certain tasks – see the useful links section at the bottom of this article for more information.

Aim for a healthier lifestyle.
It may sound obvious, but getting enough sleep and rest, having a nutritious diet, drinking enough non-caffeinated fluid and taking exercise will all help you to feel stronger and more healthy - as will avoiding smoking and drinking too much alcohol. If you have a neurological condition there are lots of things about your health that are beyond your control, but there are still lots of things that you can do something about.

"Running has helped me in many ways, fatigue being one of them," says Mike, who survived a ruptured brain aneurysm in 2008 and took up running after his treatment. "I used to be a runner in High School, and after I had recovered from the surgeries I wanted to be healthier than I had been at that time so my wife and I started running again."

It might make you feel tired just thinking about it, but as Mike found, exercise really can help you overcome fatigue, as long as you make sure you have enough rest and don't overdo it. If running like Mike sounds too strenuous for you, you could try yoga, swimming or walking instead.

Further information and useful links

Brain and Spine Helpline

Run by neuroscience nurses, providing support and information on all aspects of neurological conditions for patients, their families and carers, and health professionals.

Tel: 0808 808 1000
Email: helpline@brainandspine.org.uk

You might also want to find out more specific information about your own condition - see our list of booklets and fact sheets.

Living with fatigue

Living with fatigue - free book from the MS Trust
This comprehensive book is designed for people with MS, but some sections may be useful to others experiencing fatigue, too.

Fatigue information from the MS Society
Again, this information is written specifically about MS, but may be helpful to others.

Managing fatigue after brain injury - Headway publication
Includes information on triggers for fatigue, recognising fatigue and a practical guide to managing your fatigue.

Coping with fatigue
This information from Macmillan Cancer Support is for people who have fatigue due to cancer or its treatments.

For children

Tiredness and fatigue after an ABI (218 kb)
This information is taken from our website for children with an acquired brain injury and contains a simple explanation of fatigue, with tips on what can be done to help.

Sleep

The Sleep Council website has information on getting a better night's sleep, and tips on choosing a bed.

Sleeping Well leaflet from the Royal College of Psychiatrists
The RCP also have a leaflet on tiredness.

Getting help with everyday tasks

You may qualify for help from your local authority, or you could explore voluntary groups in your area to see if they can provide help.

A good first step is to contact your local authority to find out what help is available in your area. You can find the contact details of your local authority on the DirectGov website.

These links may also be useful:

Local authority "meals on wheels"
This page on the DirectGov website has information on meals on wheels and how to find out more.

Your local Age UK group may provide "handyperson" or home help services in your community. Otherwise they might be able to give you details of other services you could use. Call 0800 169 6565 or click to find your local Age UK group.

Crossroads Care provide local support from trained care support workers. You can find your local Crossroads Care provider here or call them on 0845 450 0350.

Work and benefits

DirectGov information on employment for disabled people
Information on support in employment and your employment rights

DirectGov information on disability and benefits
Information on the benefits you may be entitled to.

Benefit Enquiry Line (England, Wales and Scotland): Freephone 0800 882 200 or textphone 0800 243 355
Provides advice and information for disabled people and carers on the range of benefits available.