Understanding Chronic Fatigue Syndrome

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1 Understanding Chronic Fatigue Syndrome What is Chronic Fatigue Syndrome? Chronic fatigue syndrome (CFS) is an illness characterised by: Extreme fatigue St. Helier & Sutton CFS Service Post exertional malaise Sleep disturbance and non-restorative sleep Swollen glands and/or sore throat Muscle and joint aches and pains Impaired concentration and memory Mood changes It is possible to have other illnesses at the same time. Commonly these include fibromyalgia, irritable bowel syndrome, anxiety or depression, but could also include other health problems such as heart disease, gynaecological problems or diabetes. What causes CFS? It is not fully understood why people develop CFS but there are some possible causes. These include: Persistent viral infection Immune disturbance of unknown cause Disturbance of the HPA (hypothalamic pituitary axis) Primary muscle/nerve disease Primary central nervous system disease Autonomic nervous system disease Neural hypersensitivity syndrome Prolonged and persistent stress What are the physical effects of CFS? People with CFS tend to take prolonged rest, which has physical consequences, such as: Changes in body temperature, for example hot flushes and night sweats Changes in muscle functioning resulting in pain and discomfort 1

2 Reduced calcium levels Reduced ability to exercise Deconditioning of heart and blood vessels Impairment of the viral immune system leading to reduced ability to fight off viral infections Changes in body rhythms effecting secretion of hormones leading to problems with sleep, appetite and alertness Changes in the nervous system causing neural hypersensitivity leading to problems such as intolerance to sound and light Changes in mental function such as reduced concentration or impaired short term memory Routine medical investigations are often unhelpful to explain these physical symptoms. some of which are aggravated by inactivity and prolonged rest. Are stress and anxiety involved in CFS? Having CFS may be very stressful: not only may a person be feeling unwell but they may also be dealing with other concerns related to their illness, such as financial worries, or concerns about the effects their illness is having on their family. Anxiety is a normal physical response to a stressful situation. When someone is anxious there is increased activity of the central nervous system causing higher levels of adrenaline in the blood stream. Physical symptoms result which include: Increased heart rate Breathlessness leading to light-headedness, dizziness, faintness, feeling unsteady, blurred vision, pins and needles, muscle spasms, sensitivity to light and noise etc. Alteration in blood flow Muscle tension Visual disturbances Sweating Sleep disturbance Changes in mental functioning such as irritability, forgetfulness, restlessness and rumination 2

3 What is the relationship between fatigue, stress and worry, the immune system and the autonomic nervous system? Stress, depression and persistent anxiety are able to reduce the effectiveness of the immune system which is required to contain or keep in viruses that have previously made you unwell. Those with CFS may enter a cycle of stress and worry leading to an increase in their adrenaline levels, which can impact the nervous system (the brain interprets stimulation at a higher than normal level). This is referred to as neural hypersensitivity. Examples of neural hypersensitivity include: o severe pain and tenderness of the legs following a brief walk o exposure to normal light or white noise may feel as though one has been gazing into the sun or been listening to amplified noise o increased fatigue, headaches or irritability These might be made worse by mild hyperventilation arising from the stress, worry and increased adrenalin levels. The increase in stress and worry may impair the immune system which can lead to reactivation of an old viral infection. This might cause a sore throat, swollen lymph nodes/glands, nausea, vomiting and diarrhoea as well as worsening of fatigue and flu-like symptoms. As a result, fears about a serious illness may cause further stress and impaired immune function This cycle then repeats itself leaving a person feeling both physically unwell and mentally fatigued as symptoms continue to worsen This cycle can be broken... The diagram below represents the relationship between stress, fatigue and the autonomic nervous system. Note that the cycle is capable of being blocked at several points. In particular, measures to reduce stress levels are important as these will reduce adrenaline and hyperventilation as well as helping to restore the immune system. Anti-viral drugs may reduce the symptoms of fever, fatigue and aching and in this way block the cycle, but they are not suitable for everybody. 3

4 STRESS Fatigue and impaired anti-viral immunity St. Helier & Sutton CFS Service Viral infections with fatigue, sore throat, LN etc viraemia+++ Neural hypersensitivity & vascular insufficiency More viral illness or viral symptoms Impaired antiviral immunity Chronic hyperadrenalism & mild hyperventilation Worry and stress that something may be wrong Reminder: in CFS the immune system s ability to fight bacterial infections remains unaffected. It is the viral immune system that is impaired. How can CFS be managed? As there is no cure for CFS, treatment is aimed at breaking the virus, stress, fatigue and autonomic nervous system cycle in combination with combating the effects of deconditioning to improve quality of life. This may mean making changes to your lifestyle. Making change is initially challenging but should help you to improve your quality of life in the longer term. Making changes is a bit like getting a new pair of slippers, they may not be comfortable at first, but over time the more you wear them the more comfortable they become. There are a number of helpful strategies and techniques that can be used to help you. These include: Cognitive behavioural therapy (CBT) Deep relaxation Activity management Graded exercise therapy Medications Complementary therapies These strategies form a biopsychosocial approach to treatment. 4

5 What is the biopsychosocial model? Biopsychosocial is a term used to understand the various factors that affect people with CFS. As you will have experienced, your CFS causes many different symptoms and influences many different parts of your life. For example, when you have CFS: you may be physically unwell and have several biological symptoms e.g. fatigue and pain you may feel less like your normal self and more unhappy psychological symptom you may not feel able to see friends people as much social symptom Whatever is happening to your body physically (e.g. fatigue, pain, dizziness) is also having a knock-on effect psychologically (changes in the way you feel and behave) and socially (changes in activity, working life, seeing friends). It is important to understand how CFS affects these aspects of your life, as well as the physical symptoms, in order to help you improve the quality of your life. What is CBT? CBT is a therapy that helps to explain the interactions between our cognitions or thoughts, our behaviour, our feelings and our physical condition. CBT is used in the management of other conditions such as chronic pain, cardiac rehabilitation, diabetes, cancer, anxiety, depression and phobias as well as CFS. Looking at thoughts and feelings does not mean that CFS is a psychological problem or that it is all in your head. Sometimes it can be difficult to distinguish our thoughts from our feelings. A simple rule of thumb is that you can usually sum up a feeling in one word, whereas a thought usually takes a few words. Some feelings associated with CFS might include: Fear Anxiety Depression Frustration Anger If this is how you are feeling, how does it affect your thinking? Under estimating your control in situations Taking things personally Catastrophising or getting things out of proportion Self-blame or blaming others If you are thinking these things, how do you feel? Does this have any affect on your behaviour - what you do? Do any of these things affect your CFS? 5

6 The diagram below represents the CBT model and CFS THOUGHTS FEELINGS CFS BEHAVIOUR Being able to explore ones thoughts, feelings, behaviour and physical state provides a means for making and maintaining changes for recovery. Why is deep relaxation important? People with CFS often have a state of mental hyperactivity that makes sleeping difficult and also impairs their concentration and short term memory. This means that they are unable to truly relax and so suffer a heavy and draining demand on their mental and physical energy. This persistent neural hyperactivity may explain the phenomenon of brain fog that many patients with CFS suffer in crowded or busy situations. For these reasons it is important for those with CFS to practice some form of deep relaxation therapy daily. This can be done using meditation, yoga, self-hypnosis, guided relaxation or mindfulness. An easy and economical way to get started with deep relaxation is to purchase one of the widely available relaxation CD s that use techniques such as breathing exercises, visualisation and muscular relaxation exercises to help you learn to relax. Why is activity management important? Activity management can help those with CFS break the Activity Cycle. Often people with CFS describe having varying amounts of energy from one day to another or even within the same day. A lack of control of this energy may be experienced with an inability to decide whether or not to attempt an activity. This lack of energy may lead people to attempt to do too much on a good day and much less on a bad day. A period of rest and feelings of frustration and despair often follow this. This is referred to as the boom and bust cycle or activity cycling. This can help to maintain fatigue and interfere with improving energy levels. 6

7 Activity management can help those with CFS to do the same amount of activity each day so breaking the boom and bust cycle. A diagram illustrating the activity cycle Good day Prolonged rest Over activity Increased fatigue What is Graded Exercise Therapy? Some individuals with CFS experience prolonged periods of inactivity and their level of physical activity decreases significantly over time. This can lead to a general loss of strength and stamina, weight gain, joint pain and impaired function known as deconditioning. Graded exercise is a systematic programme of exercise designed to overcome the effects of deconditioning. An individual programme of graded exercise is usually devised by a physiotherapist or occupational therapist and once established can be continued on your own at home. Are medicines useful in CFS? There is no cure for CFS but sometimes medicines may be used to help relieve symptoms or aid recovery. Due to the nature of CFS and the multiple sensitivities some individuals experience many people with CFS are intolerant to any drug therapy. For these people lifestyle management is the best treatment. To date the only research based evidence for the management of CFS is graded exercise therapy and cognitive behavioural therapy, which are included in the principles of lifestyle management. Of those patients who are able to tolerate medication and have shown improvement the effect is not always long lasting. Benefit with medication is usually seen within the first four to eight weeks. If there is no benefit within this period it is unlikely that the therapy is going to work. What medicines are used in CFS? Different medicines are used depending on the symptom being treated. 7

8 Mood may be treated with anti-depressants: Tricyclic antidepressants, e.g. Amitriptyline, may be used where pain and/or sleep are also an issue. SSRI antidepressants, e.g. Prozac are sometimes used. Most trials of SSRI therapy for CFS have not shown any significant benefit. However, in those who have become depressed and demoralized by their condition, gradually introduced SSRI therapy can be very helpful. A starting dose of one twentieth of the normal initial starting dose should be used as many people with CFS appear to be acutely sensitive to this class of drugs. The therapy should be continued for at least twelve months or until significant improvement of the fatigue is seen. After that a gradual withdrawal may be undertaken over a two or three month period. Sleep may be treated with: Sleeping tablets such as Zopiclone Melatonin Herbal remedies Antihistamines e.g. Piriton Fatigue and widespread pain may be treated with: Low dose steroids Tricyclic antidepressants Fevers and sweats may be treated with: Antibiotics such as tetracycline and Minocin Antiviral medicnes such as Acyclovir TNFα Pentoxifylline, this must be closely monitored and is only appropriate in a small proportion of patients Persistent sore throat and swollen glands may be treated with: Antivirals Acyclovir for at least two but preferably three months. Herbal remedies and supplements D-Ribose and L-Carnitine may help increase cellular energy production Vitamin B12 Injections Vit B12 helps maintain healthy nerve cells and red blood cells and is needed to make DNA as well as having anti-oxidant properties Ginseng and Echinacea either alone or in combination may be of help to a small sub-group of patients with CFS 8