Action for M.E. Controlling symptoms Introduction This information sheet outlines three common symptoms that people with M.E. may experience and provides information on how they can be managed: Sleep disturbance page 3 Pain page 7 Mood problems such as anxiety and depression page 12 Recognising, treating and controlling symptoms is a vital part of managing M.E. It helps to stabilise the illness and improve the chance of recovery. Sleep disturbance People with M.E. commonly experience a variety of sleep disorders. Left untreated, sleep problems are likely to delay recovery. Good quality, restful sleep allows the body and the brain to rest and relax fully. The rate of repair of body tissues is greatest during sleep. It is important for maintaining higher brain functions, such as thinking, concentration, planning and memory. What types of sleep difficulties do people with M.E. have? Sleep disorders seem to be part of the underlying disease process in M.E., probably because the brain's control mechanisms for sleep are affected. Problems can also occur as a result of other symptoms or factors in M.E. For example, you might be kept awake at night by muscle pain. This can create a vicious circle where lack of sleep worsens symptoms and reduces your ability to cope with the illness. Sleep difficulties common to people with M.E. include: * insomnia or difficulty getting to sleep * light, dreamy, restless sleep (excessive REM sleep) * waking too early in the morning * unrefreshing sleep * hypersomnia (excessive sleepiness or sleep lasting for very long periods) * sleep reversal (for example, sleeping from 4am till midday) You may also find that your particular sleep problems change over time. What can I do about sleep difficulties? There are several ways that you can work at improving your sleep. It's worth experimenting with different methods to find what works for you. It may be useful to keep a sleep diary to note when you are sleeping, problems that you experience and measures that help. It is important to start with simple measures such as establishing a sleep routine. At the same time if you have identified other problems that are affecting your ability to sleep, such as pain, anxiety or depression, these need to be addressed. Simple measures to try first Preparation and routine - Start to get ready for bed one to two hours before your planned bedtime. Some people find that a warm bath, perhaps with calming aromatherapy oils, can help. A hot milky drink or herbal teas, such as camomile, can be relaxing. Avoid food or drink that contains stimulants, such as tea, coffee, cola and chocolate. Tobacco is a stimulant and alcohol will give you a poor quality night's sleep. Some people find reading helps them to relax, listening to music, or watching TV. Try and go to bed at the same time every night and get up at the same time every morning. Your body and brain like a routine and your brain will get used to switching off at a set time every evening. If you have got into the habit of not going to bed until the early hours of the morning, for example 3am, it is a good idea to bring your bedtime forward gradually - maybe by an hour each week. Adjusting your bedtime too quickly can be counterproductive. Your surroundings - Make sure that the room temperature is right for you. If light stops you from sleeping, try black-out blinds or curtains, or maybe an eye mask. If noise is a problem, consider ear-plugs. Make sure you have a good quality mattress that is comfortable. If possible use your bed and bedroom only for night-time sleeping. Daytime sleeping or naps - Try not to sleep during the day as this is likely to interfere with night-time sleep. If you have an overwhelming need to sleep, short naps of up to 30 minutes can be a good way of recharging your batteries. Relaxation techniques - These can be useful if you are restless and can't relax even when tired, or if you are worried or stressed. Techniques can be learned from classes (e.g. yoga or meditation), from self-help books, or from relaxation or self-hypnosis tapes that can be listened to in bed. If worrying keeps you awake at night it can be helpful to set aside a few minutes each day to write down any worries and problems. You can then write down any possible and realistic steps to resolving them. If you then wake in the night or can't get off to sleep, you can remind yourself that you are dealing with any issues that are bothering you. Address other issues - If pain is an issue or you are feeling anxious or worried, or think that you might be depressed, it's important to discuss it with your doctor. This information sheet has more information on dealing with pain and mood problems. Coping with sleepless nights - It's useful to find ways of getting through the night when you can't sleep. Lying awake can be intensely frustrating, but fretting over being awake, clock-watching, or trying too hard to sleep does not help! One strategy is to stay in bed and rest, using relaxation techniques or other passive ways of occupying your time (e.g. listening to the radio or a talking book). Or, get out of bed and occupy yourself with unstimulating or monotonous activities, which preferably use your hands, such as jigsaws, model-making, knitting or sewing. Take time to find out what works for you. Medication Tricyclic antidepressants, for example amitriptyline, can be helpful in restoring sleep quality and rhythm. It's important to start with the lowest possible dose and monitor effects on sleep and daytime tiredness before making any increase in the dose. Sometimes it may be necessary to try different tricyclic antidepressants to find the one that works best for you with the least side effects. Some antidepressants come in liquid form, which allow very small doses to be taken. These drugs can also help to relieve pain. Over time, tricyclic antidepressants may show a slightly reduced benefit, at which point modest dose increases can be useful to restore positive effects. This tolerance effect is not seen so much with other types of antidepressants. Sedative drugs and 'sleeping pills' can help in the short-term to establish a better sleep pattern, especially if you have difficulty getting off to sleep. They range from herbal remedies that you can buy from a chemist or health food shop, through to drugs that are only available on prescription. Sedatives can be useful for occasional use - such as before an important event or to break a pattern of poor sleep but may simply sedate rather than benefit the underlying quality of sleep. Regular use leads to tolerance (a need for increasing doses to achieve the same effect) and dependence (a reliance on the drug). Even herbal remedies, if used regularly, will require a bigger dose to achieve the same effect. All sedatives can impair concentration and some can lead to excessive sedation the following day. Sedative antihistamines including nytol and phenergan, can be bought from a chemist without a prescription. These may be helpful for occasional use but are likely to cause drowsiness the next day. Benzodiazepines including diazepam (valium), temazepam and nitrazepam, are prescription-only drugs. They are best avoided as they are likely to result in dependency. Other prescription drugs including zopiclone, zaleplon and zolpidem, are thought to cause less dependency problems than the older benzodiazepines. They can be helpful for short-term use. Other approaches Many herbs have sedative properties, such as valerian, skullcap, passion flower, lemon balm, hops and camomile. Herbal treatments seem less prone to cause dependence and tolerance, but like sedative drugs, these remedies may simply sedate rather than benefit the underlying quality of sleep. They may act in the body like drugs so can have side effects. Nutritional approaches may be useful if other symptoms suggest food sensitivity as some evidence links food allergies and intolerance with poor sleep. Sometimes, dips in blood sugar level during the night can cause nightmares, unrefreshing sleep and night-time waking with feelings of hunger, anxiety and sweating. It may help to have a healthy bedtime snack or milky drink if this is a problem for you. Some nutritional supplements are promoted as useful. For example, certain brain chemicals including serotonin are thought to influence sleep, so some nutritionists recommend foods rich in the serotonin precursors L-tryptophan such as milk or bananas or a night-time supplement such as 5-hydroxytryptophan (5-HT). However, the role of serotonin in M.E. is complex, so this strategy could be ineffective or perhaps worsen symptoms in some individuals. Melatonin is the hormone which helps to regulate the sleep-wake cycle and some research (but not all) suggests that certain people with M.E. have disordered secretion of melatonin. For this reason, some researchers suggest taking melatonin at night. Melatonin taken in small doses at specific times can reset the body's internal clock, so is sometimes used by those crossing time zones to help combat jetlag. In larger doses, the supplement also has a sedative effect. It is not clear exactly how melatonin should be taken and which people with M.E. will benefit, although those most likely to respond positively are the elderly and people with clear disruptions of their body clock and sleep-wake times. Anecdotal evidence from Action for M.E. members taking melatonin supplements to aid sleep includes both good and occasionally very bad reactions. Melatonin was previously available in the UK from health food shops. It was later withdrawn by the Medicines Control Agency (MCA) because of concerns about its use as a medicinal product and a lack of evidence on its safety. However the equivalent body in America (the US Food and Drug Administration) has not restricted its sale. It may be available in the UK on restricted prescription in certain circumstances but this would not be straightforward given concerns surrounding its use and the lack of knowledge about long-term effects. Complementary therapies may be helpful although little scientific evidence exists on their usefulness in relation to sleep problems. However, it may be worth careful experimentation if other avenues fail, given that individuals with M.E. have reported a wide variety of different therapies as helpful. Examples include acupuncture, aromatherapy, hypnotherapy, homeopathy, massage, spiritual healing and yoga. Devices that emit electronic impulses and low-level electromagnetic fields have been reported as useful in improving sleep problems by some patients. However, harmful effects have also been reported. The devices can be costly and are not proven to be effective in treating sleep disorder in M.E. If you decide on a course of complementary treatment, evaluate your progress at regular intervals and agree a point at which you will stop if you don't feel any benefit. If possible, let your GP or specialist know of any complementary approaches you are trying. For guidance on what you can reasonably expect from a complementary therapist, Action for M.E. has a free information sheet Guidance on seeing a private practitioner. Pain and M.E. Pain is a common problem for people who have M.E. It can be extremely disabling and may worsen other symptoms, such as fatigue, anxiety, cognitive difficulties like 'brain fog', and sleep disturbance. Chronic pain can also lead to low mood, depression and restriction of activity. If pain is a problem for you it is important to discuss it with your doctor. To help your doctor understand the pain you are experiencing it can be useful to begin by writing down your particular pain problems. Explaining your pain Where is the pain? People with M.E. commonly experience pain in their muscles. Sometimes pain and aching can be experienced in the joints. Headaches and migraines are common and so are cramps and pains in the lower gut. It will help your doctor if you are as specific as possible about where your pain is located. If you think the pain is unrelated to your M.E. make this clear to your doctor. How long have you had the pain? Has it just started? Have you had it for a long time? How often do you get pain and does anything make it worse or better? Is your pain always worse at night or when you get up in the morning? Is it triggered by certain activities such as sitting at a desk or driving? Is it worse when you are feeling worried or stressed? Is it constant? Does it come and go? What type of pain is it? Try and describe the pain you experience in words. Is it a sharp pain, shooting pain or a burning sensation? Is it an aching feeling, dull or cramp-like? Is the pain an odd sensation like 'pins and needles' or would you describe it more like an 'electric shock'? Do you get other symptoms with the pain? For example, visual disturbances or nausea with a headache may indicate migraine. What have you tried so far to relieve the pain? Give your doctor the name and dose of any medication you have tried. Tell them how effective this has been and describe any side effects you have experienced. Think about other techniques you have used in an attempt to relieve the pain. Have you tried massaging or rubbing the area, heat or cold, or complementary therapies? Rate your degree of pain? It can be helpful for you and your doctor to rate the pain on a scale of 0-10 (0 = No pain, 10 = worst pain). You could keep a simple pain diary. This can be a very useful way of measuring the effectiveness of new painkillers. Write down the times you take the medication and then rate your pain at intervals throughout the day. The Pain Society has produced a pain rating scale to assist in the assessment of pain. These are available in many languages and can be downloaded from their website at www.painsociety.org. Ways to manage and control pain Medication Your doctor may suggest that you start new medication or may increase the dose of any medication you are already taking. There are a variety of painkilling drugs that act in different ways to control different types of pain. Painkillers can be very useful drugs, especially if used regularly to prevent pain or to control pain to a tolerable level. However, people with M.E. often have a limited tolerance to drugs, so lower doses than usual may be needed. Some individuals may have difficulty in taking a sufficient dose to ease pain. In this case it may be useful to also try other methods of pain control. Examples of these are discussed later in this booklet. Paracetamol can be helpful for mild pain. It is generally well-tolerated, especially in low doses, but it may have little effect on moderate to severe pain. Paracetamol overdose can be very dangerous - read the instructions carefully and do not exceed the recommended dose. Be careful if you are taking other over-the-counter and prescription painkillers as they may also contain paracetamol (e.g. co-proxamol and codydramol). Some over-the-counter preparations contain caffeine and other substances that may not be well tolerated by people with M.E. Non-steroidal anti-inflammatory drugs (NSAIDs) can be helpful if your pain is due to inflammation, such as inflamed joints and period pain. They include asprin, ibuprofen, diclofenic and naproxen. However, NSAIDs are not usually helpful for the muscle pain seen in M.E. Also, people with M.E. often experience side effects, such as gastrointestinal irritation, or allergic reactions (especially to aspirin). Aspirin should not be given to children under 16 years of age (unless supervised by a consultant). Ibuprofen and aspirin can be bought from chemists, and soluble preparations may be useful as a gargle for sore throats (spit out afterwards to avoid too much getting into the bloodstream). NSAIDs are also available as ointments (worth trying for localised pain relief) or suppositories for use at night to relieve morning stiffness. Some NSAIDs have a sustained release formula to prolong their action. Lower doses should be used to start with, and NSAIDs should never be taken on an empty stomach. Cox-2 inhibitors, such as celecoxib, are a newer class of NSAID that were developed to minimise gastrointestinal side effects. Although they may not give much overall benefit compared with standard NSAIDs, they may be more suitable for individuals with gastro intestinal problems. Opiate based painkillers are usually effective for moderate to severe pain that is deep, or internal in origin. They include codeine and morphine and are derived from opiates found in the opium poppy, which are similar to the body's endorphin painkillers. Side effects may include nausea, dizziness, and drowsiness, particularly with stronger agents. Constipation is very common but this can be beneficial for people with diarrhoea. Regular use leads to tolerance (a need for increasing doses to achieve the same effect) and dependence (a reliance on the drug). However, addiction seems rare when these drugs are genuinely needed for pain control. Individual effects vary widely and depend on the particular drug used. Codeine can be bought over the counter and is often combined with paracetamol and aspirin. It can be helpful to relieve mild to moderate pain. Stronger opioid based painkillers have limited use in relieving chronic M.E. type pain. Tricyclic antidepressants can be effective at suppressing pain. They include amitriptyline and nortryptiline. If taken for pain relief they can be used at a much lower dose than is usual for the management of depression. At a low dose they can also have other benefits such as restoring better quality sleep and controlling some features of Irritable Bowel Syndrome. Different drugs have different effects on symptoms and they also differ in their side effects. If you find that a drug is ineffective or cannot be tolerated, it is worth systematically trying others. Drugs used to treat epilepsy which can be effective for 'nerve type' pain and some types of headache include carbamazepine, sodium valproate, and gabapentin. They have broad effects on nervous system functioning, including altering the pain threshold ('gating out' pain). Muscle relaxants and anti-spasmodic drugs are useful for muscle cramps, spasms, and twitching and include baclofen, methocarbamol, and quinine. Drugs that can help with abdominal cramps include mebeverine, alverine, and buscopan. 5-HT agonists or triptans such as sumatriptan (Imigran) may be useful for severe, infrequent headaches and migraines but frequent use can lead to 'rebound' attacks. For severe, frequent migrainous headaches, cluster headaches and facial pain, drugs such as pizotifen, sodium valproate, and gabapentin can be helpful. Other approaches Supplements and herbs are reported to help pain. It is however important to remember that they may act in the body like drugs, so can cause side effects and may interact with any other medication you are taking. For this reason you should tell your GP or specialist if you are taking any herbal or nutritional supplements. Very little research has been done on the effectiveness of these approaches. However, those that are supported by limited evidence include: Feverfew for prevention and treatment of migraine. However, as with all herbs and nutrients, preparations differ in their contents and not all formulations have been found effective. Essential fatty acids such as cod liver, evening primrose and starflower oils. Some clinical evidence suggest that certain essential fatty acids might be helpful for joint pains, period pains, breast pain (mastalgia) and some other inflammatory conditions, although the research findings are not clear cut. Limited studies on the plant Cat's claw have found that it might be helpful for arthritis-related pain and inflammation. Many non-drug measures exist that may improve pain, alone or in combination with painkillers and other drugs. However, not all these interventions are of proven benefit and some may have side effects. Cognitive Behavioural Therapy (CBT) can help individuals cope better and adjust to living with a chronic health problem such as M.E. Studies have shown positive results in some people well enough to attend an outpatient clinic. The effect of CBT on pain in M.E. is not well researched, although the technique is used widely for many forms of chronic pain, and trials suggest that it can be very effective. CBT should be administered by an appropriately trained therapist who has experience of caring for people with M.E. Electromagnetic devices that emit electrical impulses or low-level electromagnetic fields have been found useful, and their use is supported by some evidence, in certain types of pain. For example, transcutaneous electrical nerve stimulation (TENS) is of proven benefit for lower back pain and might be helpful for other types of localised pain, although little research exists on its use by people with M.E. One theory is that the application of a small current to the nerves interferes with the transmission of pain messages to the brain, and may also stimulate release of the body's endorphin painkillers. TENS and other such methods may become less effective over time and can have adverse effects, so seek professional advice before investing in such a device yourself. TENS may be available from your local physiotherapy department on the NHS. Acupuncture is used widely in Chinese medicine and more recently in western countries for pain relief. Use of needles, electrical stimulation, and other methods to stimulate certain 'acu-points' is suggested to prompt release of endorphins and possibly other chemicals. The benefit of acupuncture in certain clinical situations is supported by some evidence. However, the effect varies depending on the nature of the pain and the types of acupuncture. For example, acupuncture has been investigated for pain felt with fibromyalgia. Although some people benefited, the results indicated that for some the pain got worse initially and then improved, while others had either no response or even worse pain. Acupuncture is available on the NHS in some areas. Self-help techniques such as hot baths, massage, stretching, and hot or cold applications to painful areas may be useful; all of these seem to work by generating nerve impulses that compete with pain signals. Other people have reported benefit from learning self-help approaches such as deep relaxation, sometimes incorporating visualisations and meditation or breathing exercises. The postal library at Action for M.E. has a selection of relaxation tapes available for members to borrow. It can be helpful to experiment with different positions when in bed or sitting. Careful placing of cushions or rolled up towels can help to relieve painful and aching muscles and joints. It can also help to relieve and prevent pressure sores in people who are severely affected by M.E. and are very restricted in their movement. Side lying - Use as many pillows under your head as required. To support the arm which is uppermost, put a doubled pillow underneath. A pillow is then placed along the length of the back and 'tucked in' a little underneath you. This prevents you from rolling backwards. One or two pillows are placed between the knees and this puts the hips and knees into a position of comfort and prevents the pelvis from rolling forwards. Crook Lying - Lie on your back with your knees bent, use as many pillows to support your knees as you feel you need. This puts the lower back in a comfortable and well-supported position. Support your head with one or two pillows. Place each arm on a pillow giving support from behind the shoulder along the length of the arm, wrist and hand. Physiotherapy may be beneficial as it can help to keep your joints and muscles moving and prevent muscle wasting, weakness and joint stiffness. This in turn can help to reduce pain. Physiotherapy may be available on the NHS depending on your specific circumstances. Mood problems and M.E. People with M.E. can suffer from mood problems such as depression, anxiety, or panic attacks. These are symptoms or consequences of M.E., not the cause of the illness. People with M.E. may be worried about their illness being dismissed as 'all in the mind'. However mood problems are common in any long-term illness. Research also suggests that the neurological and immune dysfunction at the root of M.E. may cause the symptoms of depression along with the other typical M.E. symptoms. Difficulties can arise because many of the symptoms of M.E. are also typically symptoms experienced in mood disorders. Sometimes people are wrongly diagnosed as being depressed when they have M.E. It is also the case that people who have developed depression have been wrongly diagnosed as having M.E. Like any other distressing symptom, mood problems need to be tackled. Left untreated, they can reduce your ability to cope with the illness and exacerbate other problems such as sleep difficulties or cognitive problems. How do I know if I have a mood problem? Feeling low, anxious, frustrated, frightened or angry are normal responses to a long-term illness. It can be difficult to decide when these feelings and emotions have taken over to become all-consuming and hard to recognise when you need extra help. You may realise that your motivation and interest levels have declined, although this can be quite subtle. Sometimes, feeling unusually tearful or irritable can be a warning sign; or the people around you, such as family and friends, can be the first to notice that something seems wrong. If you have previously experienced depression or anxiety you are more likely to develop a mood problem as a result of your M.E. than somebody who does not have this history. How do I manage a mood problem? Antidepressants and some forms of therapy such as counselling have helped many people with M.E. who have experienced a mood problem, as well as improving other symptoms of M.E. Medication Antidepressants work by altering the level of different neurotransmitter chemicals in the brain. These chemicals are responsible for passing electrical signals between nerve cells. Many depressive symptoms such as low mood and poor motivation are linked with low levels of these chemicals for example serotonin, dopamine, and noradrenaline, which is why antidepressant drugs that increase the levels of these neurotransmitters are thought to alleviate symptoms. However, these neurotransmitters seem involved in many other processes throughout the nervous system. This explains why antidepressants have benefits other than improving depression, for example regulating sleep. It is also why they can cause side effects such as a dry mouth and constipation. Neurotransmitter changes in people with M.E. have not been well-researched. Detected abnormalities differ between individuals, so for example, serotonin might be either low or raised, which may explain why some people find antidepressants can help some of their other symptoms while other people can feel worse. Because people who have M.E. can be less tolerant of medication, antidepressant drugs should be started at a low dose. It is common to experience side effects when you start new medication but these usually subside as your body gets used to them. It is important that you keep in regular contact with your doctor, particularly early on, so that the dosage can be monitored and changed as necessary. It can take at least two weeks before you start to feel any benefits but many people can notice improvements to symptoms before this. Even if there is no early benefit, an antidepressant should be taken for at least a month before deciding that it has been ineffective at that dose. At some point, you and your doctor may agree to try stopping antidepressants, as a trial or when no longer needed. This should be done gradually with small reductions in the daily dose under regular medical supervision. Even if you get better on antidepressants, do not stop them suddenly as sudden withdrawal could lead to a relapse of symptoms, perhaps accompanied by depression and/ or anxiety. Types of antidepressant drugs Different classes of antidepressants exist, which have somewhat different effects on neurotransmitters and nervous system function. Selective serotonin-reuptake inhibitors (SSRIs) are effective antidepressants, improving mood and motivation, and some are licensed for anxiety problems. They include citalopram (Cipramil), sertraline (Lustral) and fluoxetine (Prozac). They increase the amount of serotonin available at nerve junctions. They SSRIs may help symptoms such as sleep disturbance, cognitive function and motivation and because they act in different ways to other agents, they are sometimes prescribed in conjunction with tricyclic type drugs. They can however be stimulating rather than sedative, particularly fluoxetine. SSRIs should therefore be prescribed carefully in people with M.E., particularly those with sleep disturbance or anxiety. SSRI-related antidepressants are relatively new, fast-acting and effective treatments for depression. They include venlafaxine and reboxetine. Experience is limited in people with M.E. and they may be poorly tolerated as they may make the person feel over stimulated. Mirtazapine is one of the newer antidepressants, with a slightly different mode of action. In some patients this drug is used to treat atypical forms of depression (i.e. which doesn't fit the classic picture, perhaps with additional symptoms or lacking certain key symptoms). In low doses, this drug may be useful in people with M.E., particularly those with symptoms of low mood, poor motivation, and sleep disturbance. Tricyclic antidepressants affect not only mood but also the transmission of other nerve impulses They include amitriptyline, dothiepin, nortriptyline and trazodone and are thought to work by altering the available levels of noradrenaline and serotonin in the brain. For people with M.E., these antidepressants at a low dose can be very useful at controlling symptoms such as pain and sleep disturbance. However, they are less effective at treating depression as most people with M.E. are unable to tolerate the side effects that are common at the normal prescribed dose. Monoamine-oxidase inhibitors (MAOIs) block the destruction of certain neurotransmitters, but are rarely used as a first choice for depression, whether or not the person also has M.E. Other approaches There are various forms of psychological help including cognitive behavioural therapy (CBT), psychotherapy, counselling, and specific relaxation training which are of proven benefit in the treatment of depression, anxiety, panic attacks and phobias. Although research findings differ over the relative benefits of each kind of intervention for different problems, they are all established treatments and can be very helpful for mental health problems and symptom control in people with M.E., especially those who can't tolerate drugs. There is some evidence that certain complementary therapies can help to treat depression and/or anxiety, although the trials are often small, short-term, or of poor quality. Improvement in depressive symptoms has been documented with acupuncture, certain types of meditation, specific yoga exercises and music therapy. Supplements such as the essential amino acid L-tryptophan and the derivative 5-hydroxytrptophan (5-HT) have shown a similar effect to antidepressant drugs in a few small trials but many studies have shown no beneficial effect. There have also been serious safety concerns about their use. The body uses L-tryptophan from the diet to make serotonin and other brain chemicals, although the amount found in most foods is very small. Good sources include bananas, sunflower seeds, milk and turkey. St John's Wort (Hypericum perforatum) is a herbal antidepressant that has been tested in several clinical trials. Most trials have found that various preparations have a similar antidepressant effect to pharmaceutical antidepressants, although the effect is likely to vary depending on the specific extract used. St John's Wort can interact with various prescribed medications, including the contraceptive pill. If you are thinking of trying St John's Wort or are currently taking it with prescribed medication, it is important to discuss this with your GP. Small trials have found that passion flower (Passiflora incarnata) has an anti-anxiety effect. Copyright Action for M.E. October 2003. Registered charity number 1036419. 13