From the National Magazine

Fatigue in Lupus

Dr Philip Helliwell, Senior Lecturer in Rheumatology, University of Leeds

What is fatigue?
Everyone knows what fatigue is but how can it be described? Fatigue is a feeling of both physical and mental weariness. Most people feel tired after a long day at work but recover after a night's rest. People with lupus and other forms of inflammatory arthritis can experience fatigue day after day irrespective of what they have been doing. Like pain, fatigue is invisible. Fatigue is one of the commonest symptoms in lupus occurring in over 80% of people. Fatigue is associated with exhaustion and lack of energy. It drains people, disrupts their life and makes everyday tasks seem mountainous. Fatigue can seriously impair quality of life.

What causes fatigue?
There a number of factors all of which can contribute: this is referred to as multifactorial. The disease process itself- inflammation of joints, skin and other tissues - is a good candidate. However, although some surveys have found a relationship between fatigue and disease activity, more recent surveys have not supported this as a major factor. Therefore it remains controversial whether doctors should increase levels of disease-controlling drugs, such as steroids, in an effort to control the symptom.

A number of other factors undoubtedly play their part. Pain, unremitting pain, wears you down and makes you tired. Pain also wakes you up at night causing poor quality disturbed sleep. Certain drugs used in arthritis may also make fatigue worse. Pain killers may cause drowsiness and interfere with concentration. Anti-inflammatory drugs may also interfere with concentration and cause a feeling of lightness in the head.

Lupus may cause anaemia, either directly as a result of disease activity but in many other ways. These include the side effects of anti-inflammatory drugs on the gut, lupus affecting the kidneys, and haemolysis where the red blood cells are prematurely destroyed as a result of the lupus antibodies. An underactive thyroid gland, which is slightly more common in people with lupus, may also contribute to anaemia and may cause fatigue in its own right.

Loss of muscle bulk and muscle tone, both seen in lupus as a result of disease activity and lack of exercise, will also contribute. Muscle wasting is important since more effort will be required to perform certain activities. What seemed easy before the onset of lupus now seems difficult - this is called 'reduced functional ability'.

Any chronic illness will cause distress and uncertainty about the future. This can, and frequently does, lead to depression. Sleep disturbance due to pain and anxiety will contribute. Depression is not only associated with a low mood but also with various physical symptoms, one of which is fatigue. It is also worth noting that there is a higher than average prevalence of fibromyalgia in people who have lupus. Fibromyalgia is a condition associated with widespread pain and fatigue so that people who have both lupus and fibromyalgia are faced with a 'double whammy'.

In summary, the symptom of fatigue in lupus may, as described above, be due to a combination of factors. It may be due to activity of the lupus itself, to pain, to lack of sleep, to depression and it may also be associated with fibromyalgia. As you would expect, treatment of the symptom also follows several approaches and more than one may have to be tried before success can be achieved.

How is fatigue measured?
There is no objective test allowing us to directly compare one person's fatigue with another. There are a number of questionnaires which give people the chance to express the severity of their symptoms in a variety of ways. One of these measures fatigue in terms of severity, timing, distress, and interference with daily activities. It is useful to gauge the extent of fatigue in a particular person, and provides a yardstick with which to measure the effect of treatment.

What treatments are available?
As you would expect, control of disease activity will result in improvement of pain, stiffness and may be helpful in controlling fatigue even if this is a 'spin off' as a result of improved sleep pattern. The hierarchy of drug treatment includes pain killers, anti-inflammatory drugs (NSAIDs) and disease-controlling drugs. Pain killers, such as paracetamol, and NSAIDs will undoubtedly help control the pain and stiffness. Disease-controlling drugs (such as steroids, hydroxychloroquine, azathioprine and methotrexate) have a more profound effect on the disease process and have the potential to reduce many of the chemicals released by inflammation. Specific drugs, targeted against the individual chemicals, are now available. These drugs are called 'biologicals' because they are specific antibodies designed and manufactured to counteract the effects of the inflammatory chemicals. The main 'biological' in current use is a drug which antagonises the chemical 'tumour necrosis factor' (TNF) and is therefore called an 'anti-TNF' drug. Studies in rheumatoid arthritis have shown dramatic reductions in symptoms of pain, stiffness and fatigue but the role of these drugs in lupus has not yet been established. However, it is likely that anti-TNF and other biological drugs will have a role to play in the treatment of lupus in the future.

As depression is an important factor in the development of fatigue in lupus it is sometimes helpful to take an anti-depressant drug for a period of time. If sleep disturbance is prominent it may be best to use one of the more traditional anti-depressant drugs, such as dothiepin or amitriptyline. However, if there is no problem with sleep, and indeed, if there is evidence that the depression is causing the person to slow up generally then treatment with one of the newer anti-depressants may be appropriate - among these I would include fluoxetine and paroxetine but there are many others. Depression may also be associated with feelings of frustration, anger and irritability. These feelings can be very disabling but are often helped by discussing them with someone else. If the thoughts are 'bottled up' it may lead to a feeling of helplessness which can lead to reduced activity and social isolation. Talk to someone in the multidisciplinary team who may be able to help or arrange appropriate counselling for you.

Other (non-drug) treatments for fatigue are available and should be used in addition to and as a complement to drug treatment. Getting enough rest and pacing activities may help people regain some control over their disease. Getting the right balance of rest and exercise is very important. Activities should, wherever possible, be planned and organised. Try to prevent peaks and troughs in your activity level. Try not to push yourself too far and all at once. It may help at first to keep a diary of your weekly activities to look for any of these patterns of peaks and troughs. Try to prioritise your jobs and do the most important ones first.

Recommending exercise to someone who is totally exhausted may seem odd but it is important to remember that we are not talking about running a marathon or digging over your entire allotment at one go. The exercise should be graded and controlled. It is best to build up exercise tolerance and stamina slowly. If necessary seek the help and advice of a physiotherapist. Try and do a range of movement exercise daily. Swimming is often a good exercise because the water can support parts of your body as you go through the exercises. Increasing your strength and stamina can help significantly in decreasing fatigue levels.

Do any complementary therapies help?
Many people consult their local health food shop and some report benefit with preparations containing ginko. However, much of this is unproven therapy and, although people are desperate to help themselves, it is more sensible to follow orthodox treatments as far as possible. Much can be done to help this symptom and it can be approached in many different ways as described above.

Conclusion
Fatigue in lupus is a symptom with many causes. Treatment is available from a wide variety of sources which can be provided by members of the rheumatology multidisciplinary team consisting of nurses, doctors, physiotherapists and occupational therapists. Maintaining a healthy lifestyle, getting a good night's sleep, pacing and taking judicious exercise can all help to control the symptom. Try to keep a positive outlook on your condition. Arthritis Care have for some time been offering a series of courses entitled 'Challenging Arthritis' the aim of which is to help the individual cope with and take control of their disease. They encourage you to manage your disease in a positive constructive way in conjunction with the treatments offered by members of the health professional team. Ask other people who may have been on one of these courses - it may be the first step you take in controlling your fatigue.

Useful addresses:

Arthritis Research Campaign,
Copeman House,
St Mary's Court,
St Mary's Gate,
Chesterfield,
Derbyshire S41 7TD

phone free 0870 850 5000 for patient information leaflets.

Arthritis Care for a list of 'Challenging Arthritis' courses
18 Stephenson Way,
London NW1 2HD

phone free: 080 8800 4050 from 12pm to 4pm Monday to Friday or 020 7380 6555 from 10am to 4pm (standard call charges)

Dr Helliwell, our sincere thanks for this valued article - fatigue is so common in the lupus patient and it is often difficult to achieve any form of relief.

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