Fatigue is one of the most common symptoms of multiple sclerosis. MS fatigue is very different from the tiredness or exhaustion that people without MS may have and is out of all proportion to any activity you may have been doing.
Managing of fatigue is based around making the most of your available energy by learning pacing and prioritising what you do.
What is MS fatigue?
MS fatigue is very different from the feeling of being tired or exhausted that people without MS may experience following heavy exercise or a busy day at work. It is often involves the sudden loss of energy and not being able to continue an activity. Fatigue can be either physical or mental fatigue or both at the same time. MS fatigue can not be 'worked through', as can sometimes be done by people who don't have MS, and recovery time also tends to be much longer.
As an 'invisible' symptom of MS, fatigue is sometimes not properly understood by family, friends or colleagues, who may assume that you are depressed or just not trying hard enough. Until it is experienced, it is hard to understand the impact of fatigue and how debilitating it can be. Fatigue is a major cause of stopping working or reducing working hours.
You may find that your MS symptoms get worse during an episode of fatigue but reduce again after rest. Fatigue can also affect cognitive symptoms such as problems with short term memory, concentration or word finding. People report that it is harder to 'think straight' when they are fatigued.
What does MS fatigue feel like?
People with MS describe how fatigue affects them.
- It reminds me of falling into quicksand/a swamp - it’s a viscous, heavy, pulling feeling, but if I try to fight it, it hurts like hell and robs me of breath.
- Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks.
- Fatigue feels as if I am an inflatable, and someone has pulled the airstopper out!
- Fatigue leaves me feeling dulled and tired. I find it hard to concentrate and to absorb new ideas, and I’m often confused, searching for the right word, and forgetting things.
- Some days I can almost keep up with my get up and go. Other days I can’t even get up.
- What I find is that no one, but no one, who doesn’t have fatigue from MS has any idea what it’s like.
Quotes taken from the MS Trust book Living with fatigue
What causes fatigue in MS?
The causes of fatigue in MS are not well understood. Fatigue is thought to result from different factors, partly caused by multiple sclerosis itself (known as primary fatigue) and partly by other factors (secondary fatigue) that affect people with MS more than those without the condition.
Primary fatigue is thought to be due to nerve messages from the brain and spinal cord having to cope with areas of damage caused by MS. It takes more energy for your body to operate and this leads to a build-up of fatigue. Fatigue is often associated with weakness in muscles, which again require more energy. Heat can increase fatigue in MS and you may find that your symptoms get worse during spells of hot weather or even after a hot shower or meal.
Secondary fatigue is caused by the effect of living with MS. For instance, MS symptoms such as depression, being in pain or by having sleep disturbed by spasms or needing to go to the toilet more often can all make fatigue worse. Fatigue may also occur as a side effect of various medications or be the result of inactivity, stress, poor diet or an infection. If you have other medical conditions, this can also cause or worsen fatigue.
Fatigue for many people is the result of a combination of several factors. Treatment should involve trying to identify the factors that add to your fatigue and developing an approach to manage these.
How many people get fatigue?
Although fatigue is one of the most common symptoms of MS, it is not clear how many people are affected. Levels reported in research vary greatly, from a little more than half of all people with MS up to almost everyone (96%).
What can I do if I have fatigue?
Although fatigue is unlikely to go away entirely, there are things that you can do to reduce the impact it has on your daily life.
Managing fatigue involves both trying to keep energy levels up and using energy efficiently. Getting the right balance that allows you to make the most of life is a learning process that will take trial and error. At first you may feel that you are losing control of some parts of your life, particularly if you have been used to doing everything. Family and colleagues may also take time to adjust too, particularly if they are called on to help with day to day tasks.
Perhaps more than with any other symptom of MS, the key person in fatigue management is the person with MS. Health professionals, such as doctors, occupational therapists, physiotherapists or nurses, are there to help you find ways to manage your own fatigue.
Poor sleep is common in MS. Studies suggest that about half of people with MS are affected. Ways to treat this involve finding out what might be causing poor sleep and developing good sleep habits. Over time this can help you improve your energy levels and quality of life
You may find that changes in temperature cause your fatigue to become worse. These effects are usually quickly reversed when you cool down or when the temperature falls. Cooling techniques can reduce problems.
It is common for people with MS to feel low in mood. This can drain energy and motivation and have an effect on fatigue. If mood is a matter of concern, a GP or MS nurse can help you find support and treatment.
Breaking the cycle of low mood might include:
- doing more enjoyable things, such as taking regular exercise or a new activity
- talking issues through with others - whether with a professional, a support group or just somebody to whom you feel able to open up
- actively seeking out information and advice about issues that are worrying you
- finding ways to think more positively, whether informally or by following approaches such as mindfulness or CBT. This can be difficult and take time and willpower, particularly when feeling fatigued and down, but once achieved, it can help improve your ability to cope with situations.
Stress is a common and unavoidable part of life and it is not possible to remove all of the sources of stress. There are ways to control stress by recognising its effects, identifying what is causing stress, and taking action to remove or reduce this cause.
Regular relaxation can help you decrease tension in muscles, lower your blood pressure and slow your heart rate. Relaxation promotes better sleep, increases benefit from rest periods during the day and can help to manage stressful situations.
Diet and nutrition
A poor diet or eating habits can leave you lacking the fuel you need to get through the day. A healthy, well balanced diet with plenty of fruit and vegetables and not too much fat, salt or sugar provides the best energy levels. Trying to maintain a healthy weight is also helpful as being overweight or underweight can increase fatigue.
Fitness and exercise
A lack of activity will increase fatigue. Muscles that are not used regularly become weakened and require more energy to do tasks. Some form of exercise as part of your daily routine is an essential element of a healthy lifestyle
Some drugs can make fatigue worse. This can apply to any sort of treatment regardless of whether it is being used to treat MS or not. Of the drugs for MS symptoms, those for spasms, stiffness and pain are often associated with an increase in fatigue. It may be worth asking a doctor or pharmacist to review your medication to identify potential problems and possible solutions.
Using energy in the most effective way
As well as building up the amount of energy you have, the other key part of managing fatigue is to use energy in the most effective way.
- planning - thinking about what you can achieve and not trying to tackle too much. Think about planning ahead and balancing actives which you know are going to take up considerable energy with activities that take less energy. This may be useful to do on a calendar through a day, a week or a month. Ensure that you are not only doing essential everyday activities but including some personal, social and fun activities to keep your mood up.
- prioritising and delegating - separating out what needs to be done and what other people might be able to take on for you.
- energy effectiveness strategies - thinking through tasks to see if there are ways of doing them in a more energy efficient way.
- pacing activity - doing tasks at a rate that is comfortable, with breaks and rests planned in.
You will have to try different things out to find a routine that suits you. Although these techniques may actually mean doing less than before, by saving your energy you can achieve more doing the activities that are important to you.
The MS Trust book Living with fatigue is based on a fatigue management programme.
What treatments are there for fatigue?
In some cases drugs may be used in treating fatigue. However, medication is not a solution to fatigue on its own and should be used in addition to fatigue management approaches. As different factors can add to your fatigue, you will need a full evaluation of the underlying causes. For instance, if sleep problems or lack of fitness are part of your fatigue, any treatment that doesn’t also consider these issues will be partially helpful at best.
Amantadine (Symmetrel, Lysovir) is a drug sometimes used to treat fatigue in MS. Amantadine is licensed to treat flu, shingles and Parkinson’s disease. Research has shown that it reduces fatigue in 20-40% of people with mild to moderate MS.
Modafinil (Provigil) is a drug licensed to treat people with excessive sleepiness due to narcolepsy. It has been used as a treatment for some people with MS fatigue. However, following a safety review, the European Medicines Agency now recommends that modafinil should only be used with narcolepsy.
- Expert Opinion in Pharmacotherapy 2012;13(2):207-216. Summary Management options in multiple sclerosis-associated fatigue.
- Sleep 2010;33(8):1061-1067. Full article Fatigue in multiple sclerosis: mechanisms, evaluation, and treatment.
- Expert Reviews in Neurotherapy 2010;10(9):1437-1447. Summary Multiple sclerosis-associated fatigue.
- Multiple Sclerosis Journal 2013;19(2):217-224. Summary Prevalence and concurrence of anxiety, depression and fatigue over time in multiple sclerosis.
- QJM 2004;97(10):671-676. Summary What drives quality of life in multiple sclerosis?
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