Overcoming Chronic Fatigue 2nd Edition: A self-help guide using cognitive behavioural techniques (Overcoming Books)

by Mary Burgess

And that’s the key to this book. Small steps, seemingly infinitesimal steps – literally and metaphorically – are how you will get better.

Equally, small, seemingly infinitesimal changes in your beliefs are how you will shift the underlying foundation of who you are.

Alongside our favourite hiking buddy YET, chunking things down into the smallest possible steps was the ‘magic sauce’ that helped me make progress. Breaking down your targets into teeny tiny steps really works! By making the step as small as possible, not only did it mean I could achieve it, it also helped me to nurture my self-confidence and self-belief that I could do it. And so I did.

The main symptom experienced by people with CFS is persistent mental and physical fatigue that feels overwhelming and unlike normal tiredness. Other symptoms may include painful muscles and/or joints, sore throat, headaches, pins and needles, dizziness and sensitivity to light and noise. CFS has some marked similarities to fibromyalgia, a disorder involving widespread musculoskeletal pain and fatigue; however, the component of muscle pain in fibromyalgia is generally higher.

Problems with sleep are also common: for example, difficulty getting to sleep, sleeping for very long periods, restless sleep with frequent dreams, waking frequently and waking feeling unrefreshed. Many people with CFS also report digestive disturbances such as bloating, nausea or loss of appetite. Food intolerances and increased sensitivity to some foods, alcohol and substances containing caffeine, such as tea and coffee, are often reported.

Although 10–30 per cent of all UK patients going to see their doctor for any reason report substantial fatigue lasting for more than a few weeks (15–27 per cent in the US), studies have indicated that a diagnosis of chronic fatigue syndrome is made in only a small minority of these cases. CFS appears to be more common in women than men. A variety of explanations have been put forward for this, in particular changes in the role of women, with increased demands and expectations. Although fatigue is relatively uncommon during childhood, its incidence rises during adolescence. Chronic fatigue syndrome can occur at any time in adulthood.

People report a variety of different things that happened at the beginning of their illness. Some people can pinpoint the exact date that their CFS started; for others, the onset is more gradual.

Sometimes people report having had a series of infections, which may be a sign that they are run down. However, there is no clear evidence of the virus or bacterium persisting once CFS has become established. Recent research suggests that excessive resting at the height of an infection is likely to lead to worse symptoms several weeks and months later. Although it is advisable to ‘take it easy’ when in the acute phase of an infection, too much rest is unhelpful.

People with CFS often report that they are hardworking and conscientious, and have high expectations of themselves. Individuals with this type of personality tend to strive very hard to achieve in all they do, leaving little time for pleasure or relaxation.

Evidence suggests that the longer you rest when you have a viral illness, the more symptoms you will have six months later. Prolonged rest makes it harder to become active again and actually increases fatigue. Resting for too long will affect the cardiovascular system, nervous system and musculoskeletal system.

A disturbed or erratic sleep pattern is very common in people with CFS and undoubtedly this increases feelings of fatigue and other related symptoms. Factors that may contribute to a disturbed sleep pattern include going to bed and/or getting up at irregular times, resting or sleeping for long periods in the day worrying, or having an active mind at bedtime.

The symptoms commonly experienced by people with CFS are both distressing and debilitating, and it is therefore understandable that from time to time you may worry about them. Unfortunately, symptoms thrive on attention: in other words, the more you focus on them, the worse they are likely to feel.

Over time, reduced or irregular activity and increased periods of rest cause physical changes in the body. These changes can both exacerbate the unpleasant sensations of CFS and cause additional symptoms such as increased muscle pain during exercise. It is important to point out that these changes are reversible with physical rehabilitation and/or exercise.

decrease in the number of active cell mitochondria (tiny parts of the cell that produce energy) and their enzymes has been found in the muscles of CFS patients when compared with healthy active people. This reduction of cell mitochondria has also been found in healthy inactive people.

When muscles are not used regularly, they become unfit or deconditioned. When these muscles contract during activity, uneven stresses are produced. This may result in a feeling of weakness and unsteadiness followed by delayed pain and discomfort.

During periods of prolonged physical or mental exertion, the nervous system is more active than normal and adrenaline production is raised. This leads to symptoms similar to those experienced in a flu-like illness, such as aches and pains, headache, sweating, feeling hot and cold, chest tightness and sore throat. If a person experiences these symptoms after activity, they may reduce or avoid activities, as they may believe that they are coming down with flu or a cold. Limiting activity can perpetuate the symptoms and lead to a further reduction of fitness and muscle strength.

Evidence from some studies indicates that CFS is associated with the biological clock losing control of the body rhythms.

What may happen is an infection, a very stressful life event, or an accumulation of persistent stress causes worry and disturbs sleep at night. This leads to irregular times of getting up and going to bed, and more rests taken during the day. Thus, the usual daily routine and normal sleep–waking cycle, both needed to reset the biological clock, are disrupted. The biological clock then loses control over body rhythms, resulting in the mental and physical symptoms of CFS.

Research shows that some people with CFS also have a lower than normal level of cortisol; it is thought that these low cortisol levels are probably associated with disrupted sleep and irregular activity. Low cortisol may add to the feeling of tiredness, decreased alertness and poor performance seen both in people with CFS and in those who work on night

In a study where the sleep patterns of healthy volunteers were deliberately disrupted to make them similar to those of people with CFS, they developed symptoms similar to those of CFS, including feeling unrefreshed and physically weak, sleepiness, poor concentration and muscle aches. However, when they were allowed to sleep undisturbed, their symptoms subsided. This study indicates that a disturbed sleep pattern can cause some symptoms of CFS, but that these symptoms are reversible.

Inactivity and being deprived of sleep cause an increase in the feelings of effort and fatigue when performing activity or exercise.

Having CFS can at times be very stressful. As well as dealing with your illness, you may also be facing other concerns related to it, such as financial worries and/or an inability to meet deadlines at work, college or home. You may worry about whether you are making your symptoms worse by following advice that you have been given. You also may worry about the causes of your condition and the effects of CFS on your own and others’ lives. If you have been ill for a long time, you may worry about doing things that you haven’t done for a while, such as meeting friends. All of these worries may at times trigger feelings of anxiety, which in turn can lead to a range of unpleasant physical feelings.

Increased nerve activity affects the muscles of the iris (the coloured part of the eye), causing the pupils to dilate and so to let in more light. This may help to explain the sensitivity to bright light experienced by some people with CFS. The shape of the eye lens is altered to help improve side and distance vision. Together, the effects of these changes can be experienced as blurring of vision.

Anxiety may affect mental functioning in a number of ways and contribute to the following: • mood disturbance: for example, irritability, being easily upset; • inability to concentrate, forgetfulness, indecisiveness; • restlessness: for example, being fidgety or unable to sit still; • a tendency to go over things again and again.

Prolonged rest has not been shown to be helpful in the treatment of CFS. There is a lot of indirect evidence to suggest that prolonged rest may delay recovery because of the associated physical deconditioning.

Pacing is an energy-management strategy in which people with chronic fatigue syndrome are encouraged to achieve an appropriate balance between rest and activity. This usually involves living within the physical and mental limitations imposed by the illness and avoiding activities that exacerbate symptoms or interspersing activities with planned rests. The evidence for this is lacking, although pacing is helpful for those who tend to take on too much.

Although approaches including homoeopathy, osteopathy, acupuncture and herbal remedies have helped some people with CFS, there is no research evidence to support their use.

We often refer to factors that maintain fatigue as ‘a vicious cycle’, because one factor often leads to another that then reinforces the effect of the first, and so on.

CBT is based on the principle that you can help manage your problems by changing the way you think (cognitive) and behave (behavioural).

There is growing evidence that ‘self-help’ with minimal therapist contact can help people with a variety of problems. There is a list of recommended books published on the NHS website for people with a variety of problems, many of which are part of the Overcoming series.

You will be asked to plan a programme of scheduled activity and rest, which you will review and change every week or so. The aim will be to try to carry out the same amount of activity and rest each day, in order to avoid ‘bursts of activity’ when feeling less fatigued or long periods of rest when more fatigued. Introducing short periods of relaxation will be important if you generally do too much.

Once you have established more of a routine of activity and rest, you will be in a good position to work towards your targets. This may involve you gradually increasing some activities (e.g. walking, seeing friends or studying) and introducing new activities (e.g. doing a course, voluntary work or introducing a new form of exercise such as swimming).

How we think also affects how we behave or what we do. Initially you will be asked to identify thoughts that may be hampering your progress – e.g., ‘I will feel exhausted if I go out for a walk’ – or that make you feel frustrated, such as ‘I’ll never get better’ or ‘I used to be able to do so much more.’ In time, you may find that you can be more objective about your thoughts i.e. see them as thoughts, not facts. You will learn how to challenge these thoughts by coming up with more helpful alternatives. If you find that you are having a number of thoughts around a similar theme, such as being self-critical, and that they are not going away when you try to challenge them, you will have the opportunity to deal with them by identifying and challenging deeper thoughts that we call ‘core beliefs’.

Your fatigue and other symptoms may temporarily increase when you start your activity programme and/or when you introduce or increase activities; this is quite normal, and the symptoms should subside again after a short while.

At times you may find the steps of the programme outlined in this book to be challenging. This is understandable, as you will have been doing things in your own way to manage your fatigue to the best of your ability. As you will be aiming to do things at regular times, i.e. more consistently, there may be times when you feel frustrated that you cannot do what you feel like doing. For example, sometimes you may feel like resting for longer than your programme says, and at other times you may want to continue with a specific activity when the programme you have written says that you are meant to be resting. This is understandable! However, we would recommend that as far as possible you persevere with your programme. In time, you will appreciate the benefits of gradually changing the way you do things.

Set yourself realistic and achievable targets. Be wary of being too ‘driven’ or ‘ambition-orientated’ when setting your targets. For example, if you have not worked for several years, it would be better to set yourself a target of taking up voluntary or part-time work, rather than a full-time job. Or, if you have not walked much for a long time, it is important to set moderate targets such as walking for fifteen minutes a day. Remember that you will be able to add new targets once your initial ones have been achieved; you shouldn’t bite off more than you can chew at the first attempt.

Make your targets specific, in terms of: 1. what it is you want to do (activity); 2. how often you would like to carry out the activity (frequency); 3. the length of time to be spent on the activity (duration). • Although you may feel that your choice of targets is restricted because of your symptoms, setting targets, however modest, will provide you with a clear direction and focus.

Please see below the targets that Alison planned to work towards in the longer term: • To walk twice daily for twenty minutes. • To cook a meal every night. • To attend an evening/day class once a week. • To go out with friends once a week for up to two hours.

Not only is regular exercise known to be good for physical and mental health and good sleep quality, but results from a recent study indicated that carrying out a small amount of walking a day, and building up gradually, improved fatigue and physical functioning.

Examples of not clearly defined targets • To go back to work. (No frequency or duration specified.) • To go out socially more often. (No frequency or duration specified.) • To be more active. (No activity, frequency or duration specified.) • To get up earlier. (No activity, frequency or duration specified.) These are just vague ideas and not measurable; you would therefore not know when you had met them, and would risk feeling uncertain, frustrated and discouraged about your progress.

As we have already mentioned, targets are things that you want to achieve in the longer term. Therefore, in order to work towards them in such a way that you can monitor your progress, you may find it helpful to break down each one into manageable steps. You can then gradually introduce the consecutive steps into your activity programme.

Think of ways to break down each of your own targets into manageable chunks. • Make each step small, and grade it from easy to difficult.

An irregular sleep pattern can disrupt the body clock and lead to the loss of certain cues, such as feeling tired in the evening and alert in the morning.

Daytime inactivity can increase your feeling of fatigue and desire for sleep in the day.

• Activities in your bed or bedroom such as studying, eating, using your phone or computer may make it more difficult for you to fall asleep, as you may associate your bed or bedroom with daytime activity and have difficulty in ‘switching off’.

Long periods of wakefulness in bed may also lead you to associate your room or bed with being awake, therefore making it more difficult for you to go to sleep. • An overly active mind or worries at bedtime can lead to tension, restlessness and an inability to relax, again making it more difficult to fall asleep.

Go to bed when you are sleepy, rather than at a time you think you should go. For example, if you think that you should go to bed at about 11.00 p.m., but do not feel sleepy, wait until you feel sleepy, as this is likely to speed up the process of falling asleep.

Do not be tempted to go to bed very early (e.g. before 9:30 p.m.), even if you feel very sleepy, as you may wake up in the middle of the night or very early in the morning and have difficulty falling asleep again.

If you are not asleep within about twenty minutes, go to another room and sit and relax or read until you feel sleepy again. It may be helpful to have the room pre-prepared, for example, with a book or magazine, music and a warm cover; this will help you to relax more quickly and will also increase the likelihood that you will get out of bed if unable to sleep. If you do not have another room to go to, then try to sit in a chair or on a bean bag, relaxing as described above until you feel sleepy.

An optimal sleep pattern is one in which you fall asleep within a short time of going to bed, have good-quality sleep and wake seldom and only briefly, if at all, during the night. Your sleep pattern is optimal when it is both efficient and regular. When you are asleep for the greater proportion of the time you spend in bed, the more efficient your sleep is. The more closely one night’s time in bed and time asleep resemble other nights’, the more regular your sleep is. To establish your optimal sleep pattern, you will reduce the amount of time you are in bed in order to increase the amount of time you are asleep.