management of CFS
As yet there is no specific treatment for CFS, but there are a number of measures that can be taken to alleviate the symptoms and to help your recovery. Many people have searched endlessly for a "cure" and spent a lot of money in the quest, only to become frustrated and sometimes worse. A common sense approach is all important. Remember too that what has helped one person may not help another in the same way. We are all different and respond differently to both illness and treatment.
A positive attitude is the first step in the right direction together with avoidance of stress as far as possible. Stress will tend to worsen any illness and CFS is no exception. Some people have found it has been necessary to give up work or school or to get away from their home environment for a while. The important message when starting to improve, is not to rush back too quickly and risk relapse. Often a change will give a false sense of well-being, and time is needed for the system to adjust slowly to everyday living again.
Many have found that a combination of rest, gentle exercise and stress management has put them back on their feet. But other factors, such as attention to sleep, diet and medication play an important role in the overall plan towards recovery.
Rest is probably the most important route to recovery. However it is important to get the right balance between rest and activity. Too much rest can result in muscle weakness or a poor sleep pattern. It is a good idea to try to get up out of bed if possible even when you feel unwell, as resting in a different environment will help prevent boredom and depression. After a period of rest you will often feel much better, but remember not to overdo it at this point. It is so easy to slip back
Abnormalities in muscle chemistry means that too much exercise too soon will usually lead to relapse, (post-exertional malaise) while resting all day will innevitably result in muscle weakness. The right balance therefore is vital. A simple exercise plan should be adhered to with a very gradual build up in fitness. A sensible plan should include some movement, however minimal, of each joint and muscle each day. As your health improves a short walk could be included in the day's activities. Initially a few paces could be undertaken, increasing by say 5 paces a day until you are able to walk to the local dairy or beach. Remember you need enough energy in reserve to return home. If symptoms worsen at any time, the exercise programme will need to be adjusted. It is a good idea to chart progress as this is one way of measuring recovery over a period of time, which can be very encouraging.
A variety of exercise is important to avoid boredom and loss of motivation. Swimming, walking, yoga, Tai Chi and exercycling are all suitable activities which can be monitored and increased very slowly.
A useful rule of thumb is to avoid exercise which causes sweating, panting, heart racing or muscle pain. Look on your exercise as maintenance rather than training. And make sure it is fun or you will soon give it up.
Because you feel unwell there is a great temptation to stay inside all day. Being outside in the fresh air and light for an hour each day should be part of the rehabilitation. Unfiltered light on the retina at the back of the eye has the effect of releasing hormones which make you feel and sleep better. Glasses, sunglasses or contact lenses should ideally be removed, and it is wise to stay out of strong sun. Some skin exposure enhances the metabolism of Vitamin D, an essential ingredient for health and immune wellbeing.
Many people with CFS tend to breathe poorly which maybe due to sluggish or tired repiratory muscles, or extreme anxiety. Poor breathing pattern (hyperventilation) leads to muscle pain, light-headedeness, tingling and fatigue. While out in the fresh air it is therefore a good idea to practice regular, even breathing using the abdominal muscles. Tai chi is a very suitable activity which can be easily learned to improve breathing techniques.
A balanced diet is essential for maintenance of good nutrition. Many with CFS have put themselves on extreme elimination diets, and ended up feeling very weak. You could make some basic dietary changes, and experiment with eliminating food families one at a time if there is any possiblity of a food sensitivity aggravating the illness. Food sensitivity will not be the cause of CFS, but you could get a reaction if you eat individual foods to excess.
A good rule of thumb is to stick to as normal diet as possible with plenty of fresh fruit and vegetables and to avoid any unnecessary additives, such as artificial colouring, flavouring or preservative. It is also wise to cut down on caffeine, which is in coffee, tea, cocoa, chocolate products, energy drinks and coca cola. Caffeine is a potentially addictive stimulant which can aggravate sleep. The liver is often affected by a viral infection and can be rested by minimising alcohol, fats and oils.
There is good evidence now that increasing the salt intake is helpful for some with CFS, as it helps to raise the usually low blood pressure which in turn improves brain blood flow. However you should check the advisability of this with your doctor and have regular blood pressure checks. The salt (plain sodium chloride) needs to be supplemented regularly throughout the day. Plentiful fluid intake is wise, but not so much that it washes the good electrolytes and nutrition out of the system.
Rotation diets are sometimes successful for those with sensitivity problems. This means never eating any food too often, by leaving a 3 day gap between each individual food eaten.
Occasionally there may be a problem with irritable bowel. This may result from an earlier bowel infection or can be due to previous treatment with antibiotics, or the altered immune responses. For these people, supplementing the diet with natural yoghourt or acidophillus can help rebalance the intestinal bacteria.
If the diet is adequate and you are absorbing food properly, it is not neccessary to add extra vitamins or minerals. However in CFS sometimes the appetite is very poor or the digestion is affected. Often deficiencies are found in the initial blood tests, and should be corrected. Care must be taken not to overdose with supplements. B vitamins and zinc are sometimes helpful, but these should only be taken according to instructions.
Vitamin B12 has been shown to be useful in some overseas studies and needs to be administered by injection to ensure efficient absorption. Risk of ill effects from high levels seems unlikely. Megadoses of Vitamin C should be avoided, and can lead to symptoms of irritable bowel. Some research into the use of magnesium supplements (250mg at bedtime) shows possible benefit for sleep and cramps, but this should only be used when kidney function is normal. CoEnzyme Q10 (50-200mg) can also help with myalgia. Supplementing with some amino-acids (eg carnitine, serine), sugars (eg D-Ribose) and essential fatty acids (eg Omega 3 fish oil) has shown some promise.
Sleep is nature's way of helping you recover. Deep relaxed sleep has important restorative properties associated with the release of hormones. The effects of CFS may include difficulty in getting to sleep, wakefulness or a need to sleep all the time. Most wake in the morning feeling unrefreshed because they are missing out on REM (or dream) and deep levels of sleep. These sleep disorders are probably due to the effects of the immune system chemicals (cytokines) on the sleep regulatory part of the brain. Often the body clock (circadian rhythm) goes completely out of control.
The use of sleeping pills (hypnotics) will give you the feeling that you have been asleep without the feelings of restoration. Most hypnotics actually decrease the REM periods of sleep and also affect your ability to reach the deepest levels of sleep, thus aggravating the whole sleeping problem. There is also a risk of habituation. If medication is needed it is better to use a mild tricyclic anti-depressant such as doxepin or amitriptyline, which has the effect of re-regulating the sleep cycle, which in turn will lead to the release of the healing hormones so neccessary for control of pain and energy improvement. These drugs are non-addictive and only very tiny doses are required. Because those with CFS are often so sensitive to medication, side effects (such as thick-headedness) may be experienced during the first few days, but, with perseverance, these symptoms usually fade within a week to be replaced by an increasing sense of wellbeing, and an improved sleep rhythm. Tricyclics work best if taken about 5 hours before bedtime.
Melatonin, muscle relaxants and sedating antihistamines are all useful possibilities for alleviating sleep problems in those unable to tolerate tricyclics.
Any illness has effects on the mind as well as the body. Even the common cold is associated with depression. It is not surprising that those with an illness which seems to be endless often become very depressed. There are many symptoms of depression ranging from sleep disorders to loss of energy, sadness and physical effects causing a wide variety of symptoms. The brain cells become sluggish and fail to produce the chemicals which normally promote healing and a sense of wellbeing. Tricyclic antidepressants help to restore normal functioning and improve sleep patterns. They are safe and non habit-forming and those with CFS usually respond to quite small doses. The medication must be taken very regularly (intermittant use is not helpful), and for the first few days you may experience adjustment effects such as dry mouth, drowsiness or blurred vision. These feelings soon pass and improvement is noticed after one to two weeks of treatment.
The use of the newer SSRI and SRNI antidepressants has been shown to be useful in lifting mood in CFS people, but often the sleep disorder is initially aggravated and it may still be necessary to take medication for sleeping. These medications may take several weeks to work.
Symptoms of anxiety, such as palpitations, overbreathing, panic attacks and sleeplessness are all common in CFS. Anxiety may be due to fears about the illness, lack of confidence and loss of control over your health and life. Occasionally medication is required to relieve these symptoms, but attention to stress management, meeting others with the illness and learning proper relaxation techniques, such as meditation or Tai Chi will be far more appropriate., Listening to music is also very powerful.
OTHER PSYCHOLOGICAL ASPECTS
Anyone who is unwell for any length of time will innevitably suffer from some psychological effects. This does not mean that the illness is being labelled psychiatric in origin. Anxiety, loss of confidence, depression, lack of motivation, insomnia and appetite changes can all occur as a result of any longstanding illness, and recovery will be more likely if these issues are addressed.
Counselling, psychotherapy, cognitive behavioural therapy and group therapy can all be helpful. Medication such as antidepressants may be suggested by the doctor and should certainly not be feared and should rather be viewed as part of the overall plan to manage the whole illness correctly. Relaxation, meditation, self-hypnosis and creative visualisation are all techniques which can be easily learnt and safely used to improve positive mental wellbeing, and many with CFS have benefitted from their use. Personalised tuition by a properly qualified practitioner is important.
Psychologists and physiotherapists are well qualified to teach relaxation and good breathing patterns.
Most benefit is likely to be obtained from simple methods of pain control, such as warmth, gentle massage, rest and relaxation. Simple painkillers (analgesics) may not be much help in alleviating the pain associated with CFS. Use of strong and potentially addictive analgesics is to be avoided. Low dose antidepressants taken at night may give excellent relief in chronic pain conditions. Some people have been helped by the use of a TENS machine, which works by passing a gentle electrical current along sensitised nerve fibres. A physiotherapist can advise about obtaining and using one of these devices. Acupuncture is occasionally helpful, but it is important that your practitioner has complete understanding of the illness.
Newer approaches to pain management include the use of anti-convulsant drugs in small doses such as gabapentin and topiramate. These are proving extremely effective.
Many different drugs have been tried in the quest to successfully treat CFS, but as yet there is no specific cure. Any drug treatment should be aimed at symptom relief. e.g. antidepressants to help sleep, pain and depression, antibiotics for bacterial infections, antifungals to treat proven fungal infection, and antiviral agents can be used for those with ongoing viral load such as herpes infections.
Anti-inflammatory drugs have been useful for those with severe joint or muscle pain and stiffness, but these must only be taken with food to avoid stomach irritation. The benzodiazepine group of drugs, (eg clonazepam) maybe useful in relieving muscle spasm and tension, but the addictive potential must be respected.
Drugs which help quieten and adjust the immune system now have a place in research and show future potential. Gene therapy is also in the pipeline
All of the body's functions are controlled by hormonal activity and during any prolonged illness hormone balance may be disturbed. Checks can be made on the activities of some glands such as the thyroid, adrenals, pancreas. If deficiencies or excesses are found these can usually be corrected.
Some women experience problems related to the female sex hormones, oestrogen and progestogen, and treatment with hormone replacement or the pill may help to restore balance. This can relieve some of the cyclical difficulties which may aggravate the CFS symptoms. Older women usually do well on hormone replacement, though risks must be addressed. Oestrogen has been shown to improve brain blood flow, and sleep improves with relief from hot flushes.
Many people with CFS have successfully completed a pregnancy, and a number have felt considerably better during the pregnancy and lactation period. This may be due to the release of certain beneficial hormones at this time. The decision to have a baby should make allowances for the stress and tiredness involved in coping with a child. Close family members and friends should be aware of the need to provide extra help and support, giving the new mother plenty of time for herself for rest and relaxation.
There is some evidence that there maybe genetic links in CFS and but no evidence to suggest that a mother may infect her unborn child. However CFS has sometimes occurred in several related family members, but this is most likely due to a combination of a particular inheritance, environment and/or lifestyle.
Because immunizations do have effects on the immune system, it is wise to avoid any but those deemed essential. Some people feel their illness may have started with and immunization, while others have relapsed as a result. So put these on hold until you are really well if possible. However because of the covid epidemic and risks to your general wellbeing, full discussion of the risks and benefits of the immunisation needs to be undertaken with your GP
SMOKING and ALCOHOL
Nicotine can affect the heart rate and the blood pressure, and symptoms such as palpitations may be increased. Nicotine also has stimulant properties and for CFS people this may give a false sense of wellbeing, which in turn could lead to relapse if you then overdo things.
Alcohol has to be broken down by the liver which may have been affected by the initial infection. It is wise to give the liver every opportunity to rest by limiting alcohol until you are fully recovered. Alcohol can also interfere with natural sleep. People with CFS do seem to have poor tolerance to alcohol and other recreational drugs, and often very small amounts can cause relapse.
As has already been mentioned, stress management is an important part of recovery. One way to help yourself is to learn the art of proper relaxation. Many people will say they relax a lot, but they do not actually spend time physically and mentally letting go. It is possible to obtain CDs teaching relaxation, but it is much better to attend a class or have personal tuition and have a personalised recording made. Music with a slow beat (40-60 beats a minute) also has very powerful effects at inducing relaxation. The heart will slow to match the rhythm. Try to spend an hour a day practising and make sure that you are completely undisturbed. If neccessary, take the phone off the hook and let family members know that this is your special quiet time when you must not be disturbed.
Having an animal can also be very soothing as stroking a pet promotes release of endorphins in both the stroker and the recipient. Also taking care of an animal has positive benefits.
Often when you are unwell the sex urge (libido) is diminished. You may also have a loss of self esteem and confidence. You may find therefore that your sex life has become rather limited. It is perfectly safe to have sexual intercourse while you have CFS. You are certainly not infectious, but your partner needs to understand that you may tire easily, and may also need reassurance that no harm will come to you. Sometimes when you are feeling really low, gentle loveplay, massage, cuddling and warmth can be extremely beneficial to both partners. Remember this illness does not affect fertility adversely, so adequate contraception must be considered.
PHYSIOTHERAPY, OCCUPATIONAL THERAPY
An interested physiotherapist can give you guidance about suitable exercise, and may use techniques such as massage, warmth and ultrasound. Any treatment of this kind needs to be very gentle. Some physios can advise in the use of a TENS machine for pain relief. Many also teach relaxation skills, and may be trained to use acupuncture.
Hyperventilation is a common symptom and the physiotherapist can attend to correction of breathing. Exercises to improve bladder control and to relieve an irritable bowel are helpful too.
An occupational therapist can help you rehabilitate and cope with everyday living again. You can get advice about labour saving in the home, and stimulating ideas about activities in which you may be able to participate in your community. Improvement in social skills, confidence building and consideration of return to the workforce can all become a reality again.
Many people have tried many different alternative therapies such as acupuncture, homeopathy, naturopathy, osteopathy, kinaesthesiology etc. Although some report success, this is not often backed up by reliable research and none of these treatments seem to have outstanding or longlasting effects. If you wish to try an alternative treatment, make sure you choose a reputable and well qualified practitioner who is registered in his/her particular discipline.
Always remember there are many unqualified charlatans around who are quick to take your money with the promise of a miracle cure. If a miracle cure was available we would all know about it. Beware too of overdoing herbal preparations as these can be highly toxic, and just as you can be very sensitive to medication so you can be equally sensitive to natural remedies.
ALLERGIES, TOXINS, CANDIDA
Those with CFS often worry that these conditions may be causing their illness. The cause of the illness is more likely to be a viral or bacterial infection which has upset the normal functioning of the immune system. As a result of this there is sometimes a greater reaction to things which previously caused no problem. There may be a increased tendency to allergy reactions and sensitivities to food and other chemicals. Desensitisation or detoxification programmes seldom give lasting relief. They are usually expensive, time consuming and are not getting at the cause of the illness. Candidal overgrowth in body orifices can occur as result of chronic ill health, hormonal imbalance or previous antibiotic treatments, but is unlikely to be the cause of this illness. It is best treated with local anti fungal preparations. Systemic candidiasis is not likely to be part of CFS.
There is no researched evidence that poisoning from mercury amalgam is implicated in CFS.
Being ill for a length of time innevitably leads to social isolation. The easy fatigueability which is part of this illness can have a very restrictive effect on social and family relationships. Partners, parents and others close to you may need special advice too, to help them understand the illness and learn how best to help you. Getting out to meet others can be very difficult, but true friends can be encouraged to visit for short periods, and no offer of help should be refused.
It is often neccessary to give up work or school for a while to be able to rest properly without pressure to perform as usual. Joining a support group to meet others with the same problems can be helpful as long as the group has a positive outlook. If you find you can no longer take part in your usual activities for a while, you may need to find new interests. This could open the door to a new and absorbing activity which you may never have had time to explore previously.
Because of the fatigue and difficulties with concentration, study is often limited and the pressures of trying to conform and keep up can have a negative effect. Parents should discuss the child's illness with teachers, and make them aware of the importance of avoidance of too much physical effort or stress, and explain that the child may often need to take half days off. It is possible to join the Health division of the Correspondence School, (full or part-time) and application can be made with a medical certificate. Students can then work at their own pace and enjoy a sense of achievement. When ready to return to school they will not feel behind their peers. Competitive sport is best avoided until recovery is complete.
Those wanting to attend University can enrol in the Extra-mural programme offered by Massey University. Alternatively enrolling in just a few papers at a local University may be preferable. Fulltime and very intensive courses should be postponed. The young person may feel extremely frustrated and disappointed that plans have been thwarted temporarily.
WORK, BENEFITS etc
It may be sensible to give up work for a time in order to give yourself the best chance of recovery. This is usually a hard decision bringing feelings of guilt and frustration. Financial constraints make it doubly difficult. Your doctor may be able to arrange for you to receive a sickness benefit, disability allowance or a high user health card, which means lower medical and prescription fees.
It may be possible to get some financial help towards gardening, heating etc. A disability parking permit can also make life easier.
Once the decision is taken to return to work this should be done gradually, never taking on more than you can comfortably manage, and making sure that you still have adequate rest periods, early nights and plenty of relaxation. Sometimes a change of occupation to a less stressful environment is wise. Providing the employer with information about your illness is sensible, so they will be more understanding if you need to take days off.
You may have an insurance policy which covers time off work and you should discuss this with your doctor.
COMMUNICATION WITH FRIENDS,DOCTORS etc
Until recently many people with CFS have found it hard to explain to others just what is wrong with them. Many doctors too have not previously had the benefit of learning about CFS at medical school. However this illness is now widely recognised and has received publicity both here and overseas. Research in many countries is being reported in leading medical journals looking at viruses, the immune system, biochemistry, brain bloodflow etc. This means that doctors and others in the community will have more understanding than ever before.
If you have difficulty telling friends about the illness, it is easiest to say that you have had an infection from which you have not yet fully recovered. Stress that you are no longer infectious and that you need a lot of rest to enhance your recovery. Your own attitude and common sense approach will help others understand how best to support you through this time.
A FINAL WORD
If symptoms change or suddenly worsen it would be wise to visit your doctor for a reassessment. It maybe necessary to repeat some of the laboratory tests to confirm that you have not developed a different illness. Regular routine health checks should not be neglected.
As you gradually recover from this disabling condition and begin to feel normal and healthy again, you will feel like a butterfly emerging from a crysalis - renewed, refreshed and full of energy. You will have learnt a great deal and be ready to face the future with positivity and inner strength.
Who is at risk of getting ME/CFS?
About 2-4 per thousand are affected with this illness worldwide. It strikes all ages and socio-economic and ethnic groups. Read more...
How it is diagnosed?
There is no specific diagnostic test for CFS, but your doctor can arrange for certain tests to be done to confirm that you are not suffering from some other illness, such as anaemia, diabetes, thyroid imbalance, liver disease etc. Read more...