Motor Neurone Disease (MND)

Tiredness, pain and discomfort with MND

Many people living with MND said they tired easily and found trying to do too much in one day could be exhausting. Sometimes the fatigue and the physical effort of keeping going could make people feel quite uncomfortable or achy. Several had had to learn to slow down and reduce the amount of activity they planned for a day, but it could be frustrating for people used to an energetic, busy life. A few said they tried to ignore tiredness and just keep going, but others recommended frequent rests. Trying to work through tiredness may not suit everyone, as it may tire the muscles and lead to feeling worse the next day - it has to be an individual choice.

MND is generally not a painful condition, but muscle stiffness can be uncomfortable at times. Some people experienced twinges, aches and cramps. (See also 'First symptoms of MND'). Getting stiff after sitting still for a long time or trying to get comfortable in bed were common difficulties. On the other hand, some people said they had little or no pain.

Getting plenty of good sleep and rest were important to many people. One young woman found it hard to sleep because of painful spasms in her legs, but her parents discovered that doing regular physiotherapy exercises for her helped. (See Interview 46 - Olivia and Peter's story, and 'Physical therapy and exercise with MND' ). It is important to consult a GP, neurologist or palliative care consultant for advice on symptom control. There is medication which can be tried to relieve muscle spasms and cramps, which are common symptoms in MND. Poor sleep due to discomfort may also be remedied by consulting a physiotherapist who can look at positioning in bed for comfort, or an occupational therapist or nurse who can advise on aids to help with sitting up or moving in bed or different mattresses. A profiling bed (with independently movable sections) may be appropriate, and could also help with any breathing problems at night by helping the person to lie more upright. Some people said they preferred to sleep in a reclining chair for similar reasons. 

Some people reported that starting on non-invasive ventilation had improved their sleep and made them feel much less tired. (See 'Feeding tubes (PEGs, RIGs, PIGs) and ventilation'). This is because shallow breathing can lead to disturbed sleep, so people wake up feeling tired and feel sleepy during the day.

A few people found it hard to keep their eyes open because the muscles around their eyes became weak and tired. (This is an uncommon symptom).

People described other ways in which tiredness affected their daily lives. One woman said she needed a sleep in the afternoon, so she couldn't easily attend support group meetings which usually happened then. Another noticed more excess saliva when she exerted herself, and felt it was nature's way of telling her to rest. 

Some had to give up work or leisure activities because they found it too tiring to concentrate and kept falling asleep. One man said 'just sitting in the car can tire me. If we drive for more than three-quarters of an hour we have to stop and just let me have a little rest.' Another felt the time had come to give up driving. 

Tiredness and concentration are of course closely linked. Concentration can also be affected by changes to thinking and reasoning, known as cognitive change. This can happen for some people with MND. This is explored further in 'Forgetfulness and thinking'.

The MND Association hosts an online forum for all people affected by the disease. This is a useful place to share tips on how to manage fatigue. See their website for a range of information sheets, including 11D: Managing fatigue.

Last reviewed August 2017.
Last updated August 2017.


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