Living With Lupus
Fatigue in SLE
Long-term survival for patients with SLE has improved dramatically over the last 50 years. However, fatigue remains a disabling symptom and is the primary unmet need for people with SLE.
Fatigue is not necessarily related to disease severity in SLE. People with mild and/or well controlled SLE may still experience substantial fatigue. Factors such as co existing fibromyalgia, depression, pain and sleep disturbances have been shown to increase fatigue in SLE, however many other factors may also be involved.
What can be done to reduce fatigue?
Unfortunately there is no easy answer to this question. But the following tips may help:
- Speak to your doctor about your fatigue as there may be specific factors related to your particular situation that may influence your fatigue levels.
- Understand your disease. Knowledge is power!
- Speak to a healthcare professional
- Call the Lupus Foundation within your state
- Join a peer support group
- Complete a chronic disease self management course. Details of courses available by calling the Arthritis Foundation in your state1800 011 041
- Speak to a psychologist/counsellor. Being diagnosed with a chronic illness may impact many facets of your life, having the opportunity to discuss the impact of SLE on your life may increase your coping mechanisms and enable you to manage the disease more effectively.
- Looking after yourself is important , listen to your body and don’t overdo it – the consequence of overexertion may be elevated fatigue in the following days.
- Commence a graded exercise programme as appropriate, regular exercise under the guidance of a healthcare professional may improve your vitality and reduce tiredness.
- Decreasing stress in your life may enable you to manage fatigue better. Relaxation or “me” time is essential. Choose an activity you enjoy such as meditation, gentle exercise, listening to music etc.
- Ensure that you have a regular bedtime and avoid daytime napping where possible. Of course there are some days where daytime rest will be essential. However, do not make a habit of it. Too much sleep during the day may mean poor sleep during the night.
Monitoring fatigue
There are many questionnaires designed to measure fatigue. The Fatigue Severity Scale (FSS)1 has been used in many studies involving people with SLE. It is a method of evaluating the impact of fatigue on you.
The FSS contains 9 statements that rate the severity of your fatigue symptoms. Read each statement and circle a number from 1 to 7, based on how accurately it reflects your condition during the past week and the extent to which you agree or disagree that the statement applies to you.
A low value (eg 1) indicates strong disagreement with the statement, whereas a high value (eg 7) indicates strong agreement.
Add up all responses and divide by 9 to give a score out of 7. A higher score indicates greater fatigue.
Use this scale to monitor your fatigue. Keeping a diary may help you to identify fatigue triggers.
Fatigue Severity Scale
| During the past week I have found that | Disagree | Agree | |||||
|---|---|---|---|---|---|---|---|
| My motivation is lower when I am fatigued | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| Exercise brings on my fatigugue | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| I am easily fatigued | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| Fatigue interferes with my physical functioning | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| Fatigue causes frequent problems for me | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| My fatigue prevents sustained physical functioning | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| Fatigue interferes with carrying out certain duties and responsibilities | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| Fatigue is among my 3 most disabling symptoms | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| Fatigue interferes with my work, family or social life | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
| Total Score: | |||||||
Reference:
Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD (1989) The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol. 46: 1121-1123.
