Fatigue and multiple sclerosis
Fatigue limits the lives of 85 per cent of people with multiple sclerosis. It is important that fatigue is taken seriously and its management is considered carefully.
What is fatigue?
MS fatigue is different for everyone; for some it causes overwhelming tiredness, whilst in others it worsens symptoms such as visual disturbance, difficulties with concentration, memory, mobility and muscle spasms. Fatigue may make it more difficult to deal with everyday activities.
Primary fatigue
Primary fatigue is experienced as a direct result of damage to the central nervous system. The body responds to this damage by slowing down reactions and thus causing fatigue.
People with MS experience different types of fatigue including:
• Lassitude: an overwhelming tiredness not directly related to participation in activity or exercise.
• ‘Short-circuiting’ fatigue: occurs in specific muscle groups; for example, the hand after writing for a short time.
• Heat sensitivity fatigue: a rise in body temperature can cause fatigue. This kind of fatigue can occur due to the seasonal changes in the weather but may also be triggered by other things; for example, taking a hot bath or eating hot meals.
Secondary fatigue
Fatigue can be experienced as a result of other factors that are not necessarily directly related to your MS. These can include:
• Sleep disturbance: this is often due to symptoms that can be alleviated or lessened; for example, spasms, pain, urinary urgency at night, depression or anxiety.
• Infection: may cause a number of symptoms that could bring on specific MS fatigue; for example, having a cold or flu may raise your body temperature.
• Exertion: the increased effort required by the body, if mobility or coordination is affected, can cause fatigue.
• Medication: there are many medications that may cause tiredness or drowsiness as a side effect. It is important to be aware of this. If you notice that there is a correlation between a change in fatigue levels and a change in medication, tell your general physician.
• Depression: may be due to nerve damage or because of the emotional impact of adjusting to MS.
• Local environment: the lighting and temperature within a work area is crucial, as poor lighting increases visual effort and heat frequently exacerbates fatigue.
Fatigue management
Fatigue requires a coordinated approach that involves active participation and involvement from family and colleagues, as well as health professionals. You may feel that your personal relationships are affected because people do not understand how fatigue affects you. If you would like to talk about the difficulties you are experiencing coping with fatigue, it may be worth talking to a trained counsellor. Your national MS society will be able to advise you on where to find counselling, or may even offer such a service itself.
Drug Treatments
Primary fatigue management will probably involve the use of drugs. It may take several attempts to find the most suitable drug and dose for you. Because MS fatigue is caused by damage to the nerves, standard fatigue medications are not effective.
It is common for someone with MS fatigue to be treated with drugs that are also used in the treatment of Parkinson’s disease, flu or narcolepsy (excessive daytime sleepiness). This is because they have been shown to have an effect on MS fatigue, not because your doctor thinks you have any of these conditions. Drugs for fatigue include:
• Amantadine: Side effects experienced may include dizziness, headache and difficulty sleeping.
• Modafinil: This is a new treatment still
undergoing clinical trials. Small-scale studies have supported its use for MS fatigue. Side effects can include headaches, weakness and nausea.
There is further information in the article on page 17.
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Many factors that cause secondary fatigue can be controlled
Non-drug treatments
Changes to your daily routine can help manage your fatigue. These changes are best achieved with the support of occupational therapists, physiotherapists, your general physician, neurologist and MS nurse.
Occupational therapy and physiotherapy
The occupational therapist’s role is to adapt tasks and incorporate strategies that allow daily activities to be carried out in an efficient, energy-effective way. There is further information in the article on page 9.
Physiotherapists help strengthen, stretch and relax muscles. This increases joint movements and improves circulation. They can structure an aerobic exercise programme for you.
There is more information about physiotherapy in the article on page 12.
Areas to consider when examining your daily routine should include:
Rest and relaxation
If there is regular pattern to your fatigue, it is ideal to take the rest before it is at its worst, as this enables the body to recuperate more quickly.
Relaxation techniques are available on compact discs or audiotape, and are an effective method of complete relaxation. The relaxation method used must not require active contracting and relaxing of muscles, as this can increase muscle spasm.
Prioritisation of daily activities
If you make a list of your regular habits and routines, some activities will be an obvious priority. Others can be shared, altered or even eliminated.
Some changes will require the cooperation of others; it is important that everyone understands why the changes need to be made and the benefits they will have to you.
Planning and adapting daily activities
Daily activities demand varying levels of physical and mental effort. It is important to balance these tasks, rather than rushing to complete everything in one go. Activities are ideally planned around regular rest periods. It is best to complete essential tasks when fatigue is at its minimum, and also break tasks down into manageable stages.
Organisation
You can ensure energy efficiency and effectiveness during a task, for example by keeping frequently used items within easy reach. Gadgets such as food processors, remote controls and headset telephones also limit the effort required in completing activities. Key areas where this can help are the kitchen and work place.
Your national MS society may be able to recommend sources of equipment and adaptations in order to conserve energy.
Good posture and positioning
Sitting rather than standing is desirable in maintaining a good posture and saves energy during lengthy tasks. It is important to consider your technique when handling or lifting objects. This helps prevent injury and uses energy effectively.
Healthy balanced diet
A low fat diet, avoiding heavy, hot meals, is effective in limiting fatigue. Excessive alcohol and smoking can also have a negative impact on the level of fatigue you experience.
Appropriate exercise
Gentle aerobic exercise is a positive approach to managing fatigue. It promotes muscle efficiency and strength, as well as increasing stamina. It is important to consult a health professional before starting any exercise regime.
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