Fatigue and sleep

Fatigue

Fatigue is common when living with Motor Neurone Disease. By recognising the factors that worsen symptoms and by learning how to conserve energy, people with MND can improve their quality of life. Some strategies are:

• plan activities in advance
• take regular rest periods
• rest between activities and before going out
• do not exercise to the point of excessive fatigue, cramps, or muscular weakness
• discuss with a physiotherapist exercises to alleviate stiffness, muscular tension, or pain
• move slowly, with frequent rests, taking a few breaths before recommencing a task
• keep heavier tasks for times of greater energy
• stop if breathlessness occurs
• discuss, with an occupational therapist, aids and equipment that can make tasks easier
• take shortcuts where possible and sit rather than stand
• try to establish a regular sleeping pattern
• make the personal environment safe and easy to move around
• a sleep study may be useful when people with MND wake up regularly during the night and don’t feel refreshed by sleep

Sleep

Sleeping difficulties may be caused by a variety of reasons, for example, discomfort because of immobility, pain due to stiffness of joints or muscles, excessive saliva or dry mouth, or breathing problems.

People with MND may find it useful to have regular respiratory assessments, including sleep studies. These are most useful at a relatively early stage and their timing depends upon the level of abnormality detected. It may also be helpful to consider non-invasive respiratory support to improve sleep and daytime exhaustion or sleepiness (see Breathing and MND).

Different sleep strategies work for different people:

• if possible, try not to remain in the same position in bed for too long
• satin or silk sheets may help moving about in bed
• an electric bed can be adjusted to a variety of positions at the push of a button
• side rails, bedside furniture and extra pillows can give added support
• a segmented overlay mattress and specialised pillows distribute body pressure more evenly
• muscle spasticity or pain from muscle tightness and joint stiffness may be relieved with medication prescribed by the GP
• non-prescription analgesics such as aspirin or paracetamol can relieve mild discomfort
• before retiring, joint pain may be relieved by stretching or range-of-motion exercises – a physiotherapist may be able to find the origin of the problem and recommend a remedy
• breathing may be helped by elevating the head and chest with an extra pillow or two, or raising the head of the bed on blocks; this relieves pressure on the diaphragm and improves lung expansion
• before going to bed, avoid over-exertion, caffeinated drinks, smoking and heavy meals – too much food puts pressure on the diaphragm and can aggravate breathing problems
• retire at the same time each night and reduce daytime napping
• make sure the bedroom is quiet, cool, dark and comfortable – light bedclothes allow easier movement in bed
• impaired swallowing reflexes may cause a build-up of saliva or mucus – sleep with the head elevated to prevent secretions from pooling in the upper airway
• a slow rhythmic back rub or a light massage of aching muscles promotes relaxation
• deep abdominal breathing may reduce stress
• soft music or reassuring conversation can promote sleep

Many people will experience difficulty sleeping because of the emotional distress of receiving a diagnosis of MND or the stress of living with MND. In these circumstances the person with MND should be encouraged to speak with their neurologist or GP about counselling, ongoing support, and medications to relieve anxiety or depression, if present.