Fatigue and multiple sclerosis
Over the past few decades people with MS have tried various methods of alleviating fatigue, even before it was known that MS fatigue stemmed from a different cause than ‘normal’ fatigue.
As early as the 1960s it was common to advise people with MS to bathe in cold water when they felt fatigued, and for many this treatment did seem to relieve the symptom and provide renewed energy. Today we have cooling garments to achieve the same goal without requiring the person to get wet, dry off and dress again every time he or she feels fatigued (a process which itself requires a great deal of energy). As the fields of medicine, physiotherapy and occupational therapy have advanced, people with MS now have many options available for better identifying and managing fatigue.
MS nurses have an important role in the assessment and management of fatigue. They may begin by asking key questions in order to understand the details relating to the person’s symptom. In some cases nurses may use fatigue impact scales or questionnaires to measure the effect that physical, emotional and psychosocial factors may have on fatigue. Finding out which factors are involved can help in determining the best intervention and can help nurses in referring the individual to the most appropriate type of healthcare professional for further assessment and intervention. If the underlying cause of the fatigue is related to physical factors then physiotherapy and exercise may help to improve the person’s fitness. However, if the fatigue may be related to depression then a referral for counselling might be the most appropriate intervention. If an infection with increased body temperature may be the cause of fatigue, the nurse’s primary goal would be to identify and treat the infection.
As part of the assessment, it is important the MS nurse asks about the person’s sleep patterns. Typically this can be accomplished with a few relevant questions posed by the nurse during regular visits. The nurse should ask whether the person with MS wakes during the night needing to urinate. If yes, how many times? The medical term for frequent urination during the night is ‘nocturia’; it is a problem experienced by many people with MS and is a cause of secondary fatigue. It is also helpful to ask whether the person’s breathing is interrupted during sleep and if loud snoring occurs, perhaps pointing to sleep apnoea (interruption of breathing during sleep due to temporary obstruction of the airway), which causes restless sleep resulting in tiredness the following day.
Another useful tool in assessing fatigue is a diary kept by the person with MS to record the times and situations in which they experience the greatest fatigue, and also, perhaps even more importantly, times and circumstances in which fatigue is at its minimum. The MS nurse can help the person in getting started with a fatigue diary.
What can be done to alleviate fatigue?
An important strategy for learning how to deal with fatigue is talking with other people who experience the same symptom. Comparing self-management strategies is often of more help than suggestions from a healthcare professional.
It is also important for the person with MS to communicate openly about his or her fatigue with family and friends so that they understand the problem and can be more helpful when necessary. Knowing that fatigue is a real symptom of the disease helps people talk with others more openly. The MS nurse can have an important role in educating the individual and family members to understand and deal with fatigue better.
It is common for people with MS to take various medications at the same time. For this reason, the nurse has a role in encouraging the person to keep a list of all medications, including complementary therapies, and to continually update the information. There are many medications taken for other MS symptoms that can cause or worsen fatigue and it is important for the person to assess his or her medication list at every meeting with the nurse and neurologist.
Just because a person has been diagnosed with MS does not exclude him or her from having other illnesses, so the medication list must include all medications, not only those being taken for MS-related problems.
Being realistic is important
Successful fatigue management is never easy. There are many different strategies for dealing with fatigue although not all of them are appropriate for every person with MS. It is important to be patient and flexible in trying out different strategies until the individual discovers what works best for him or her. The MS nurse can help in assessing fatigue, suggesting strategies, educating, making referrals to other healthcare professionals and in setting goals toward optimal
fatigue management.
Medications that can cause fatigue (otherwise known as lassitude, weariness, lethargy and tiredness) *
Analgesics
Anticonvulsants
Antidepressants
Antihistamines
Antihypertensives
Anti-inflammatory
Antipsychotics
Asthma drugs
Carbonic anhydrase inhibitors
Cardiac drugs
Diabetic agents
Gastrointestinal agents
Genitourinary agents
Hormone replacement
Immune modulators
Muscle relaxants
Nicotine agents
Sedative hypnotics
*Adapted from Physician’s Desk Reference, 1998, Medical Economics, Inc. |
Fatigue Diary: Instructions
1. Assign a number from 1 to 10 (1 being very
low and 10 being very high) for:
- Your level of fatigue
- The value or importance of the activity you are
doing (by comparing it to other activities you
would like to do during the course of the day)
- Satisfaction you feel with your performance of
the activity
2. Describe the physical work done in the Activity column (eg stood to shower for 10 minutes, carried two | bags of groceries up 15 stairs, walked 300 metres to the neighbour’s house).
3. List MS symptoms as they appear or worsen
during the day in the Comment column, including
problems concentrating, visual problems,
weakness, dragging foot, pain, numbness, etc.
Include temperature of the environment when
relevant.
4. Record information every hour that you are
awake and write the times you were asleep. |
For example:
| Name: | Date: | Describe last night’s sleep: | | 12:00 | Fatigue 7 | Value 3 | Satisfaction 2 | Preparing lunch
standing 15 minutes | Blurred vision,
very warm in kitchen |
Sample form:| Time | Fatigue | Value | Satisfaction | Activity | Comment | | 06:00 | | | | | | | | 07:00 | | | | | | | | 08:00 | | | | | | | | 09:00 | | | | | | | | 10:00 | | | | | | | | 11:00 | | | | | | | | 12:00 | | | | | | | | 13:00 | | | | | | | | 14:00 | | | | | | | | 15:00 | | | | | | | | 16:00 | | | | | | | | 17:00 | | | | | | | | 18:00 | | | | | | | | 19:00 | | | | | | | | 20:00 | | | | | | | | 21:00 | | | | | | | | 22:00 | | | | | | | | 23:00 | | | | | | |
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Adapted from Activity Diary, Fatigue and Multiple Sclerosis, Multiple Sclerosis Council for Clinical Practice Guidelines, Paralysed Veterans of America, 1998.
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