Fibromyalgia is a type of rheumatism which affects the muscles and ligaments but not the joints. It will not cause permanent damage but it will last for months or years. Because there are no outward signs, other people may not appreciate the pain and tiredness you are suffering. People with fibromyalgia often look well and feel awful.
It is a common condition, sometimes so severe that it interferes with personal and family life. In fibromyalgia the fibrous tissues (fibro-) and muscles (-my) are affected by pain (-algia) and tenderness. The pain may often feel as though it affects the whole body.
Tender points are usually present in certain areas of the body. These help the doctor to make the diagnosis. If enough pressure is applied to these places most people will find it uncomfortable but in fibromyalgia there is a change in the threshold at which pressure causes pain and many of these points can be extremely tender. Some typical tender points are shown below. Tenderness at individual sites sometimes occurs and this can give rise to localised conditions such as tennis elbow. In fibromyalgia, however, there is tenderness at a number of points.
In the past fibromyalgia was often diagnosed as muscular rheumatism or fibrositis. Or else it was misdiagnosed as degenerative disease of the joints (signs of wear and tear are very common on spine x-rays as we get older, whether there is pain or not). Research in the past few years has led to a much clearer picture of fibromyalgia, and the diagnosis is being made more often by rheumatologists and general practitioners.
Symptoms of fibromyalgia
Pain, tiredness and sleep disturbance are the main symptoms of fibromyalgia. Most people feel the pain of fibromyalgia as aching, stiffness and tiredness in muscles and in tendons and ligaments around joints. It may feel worse first thing in the morning or as the day goes on, or with activity. It may affect one part of the body or several different areas such as limbs, neck or back.
Fatigue (tiredness) may be the most severe aspect of fibromyalgia. There may be overall tiredness and lack of energy, or muscular fatigue and lack of endurance. Either way, it can be difficult to climb the stairs, do the household chores, or go shopping – let alone go to work. Becoming less fit may make matters worse.
Less frequent but still troublesome symptoms include:
- Tingling, numbness, poor circulation or swelling of the hands and feet.
- Headache, irritability, feeling low or weepy.
- Forgetfulness and poor concentration.
- Needing to pass water or feeling an urgent need to pass water.
- Irritable bowels.
- Waking up feeling unrefreshed.
Of course symptoms like these can have other causes, and your doctor can help decide whether any further tests or advice are needed. The severity of the symptoms in fibromyalgia can vary considerably. There is a range, from severe disruption of life to almost normal, and this spread causes problems in diagnosing the condition and can lead to varying medical opinions.
Fibromyalgia and chronic or post viral fatigue (ME)
The symptoms described in ME (myalgic encephalomyelitis) are often very similar to those in fibromyalgia except that ME sufferers can often recall a viral infection before symptoms appeared, and have less pain. For this reason many doctors prefer the term post-viral or chronic fatigue syndrome rather than ME. More needs to be known about these conditions before we are able to understand whether there may be a relationship between them.
What causes fibromyalgia?
Much recent research into fibromyalgia has been stimulated by the finding of specific tender points and the discovery of sleep disturbance. Brain wave studies (EEG) during sleep have revealed that people with fibromyalgia lose deep sleep. Deep and non-dreaming sleep is repeatedly and excessively disturbed by lighter, dreaming sleep. Healthy people who are woken up in each period of deep sleep suffer the typical symptoms and tender points of fibromyalgia.
Several things could produce the disturbance of deep sleep that can produce fibromyalgia. More than one cause may be affecting any particular individual. Pain or stiffness in the neck may disturb sleep. There may be the pain and stress of an injury or of another disease like arthritis. Emotional pain and the strain of anxiety or depression brought on by events or relationships at home or work may also be a factor.
Once fibromyalgia sets in there is a vicious cycle producing more pain and more sleep disturbance. This can be enough to cause depression even if this was not present initially. When fibromyalgia is obviously associated with another condition like arthritis or depression it is sometimes called ‘secondary’. When it seems to be occurring alone it may be called ‘primary’.
Fibromyalgia can be treated
Fibromyalgia cannot be cured but with the help of your doctor and family it can be helped a great deal. It may settle down by itself, but usually only after months or years. Your doctor can help first by making the diagnosis of fibromyalgia and reassuring you that despite all the pain you don’t have a condition which will cause permanent disability. You are no more likely to develop arthritis later on than anyone else. Your doctor can also prescribe medication, but you will learn for yourself whether this helps enough to be worth continuing. Your family can help with understanding and encouragement.
The medication available to help your pain includes painkillers like paracetamol and non-steroidal anti-inflammatory drugs (of which there are many). These may help a little. Similarly, a steroid injection in the affected area may help if one or two places are particularly painful. But the effect of injections is temporary.
Your doctor can also try to help with the sleep disturbance. Sleeping in a soft collar helps some people sleep better, particularly if the neck is uncomfortable. There is no harm in you trying this for a week or so, providing you do not get into the habit of wearing it during the day. Ordinary sleeping tablets are best avoided because they are often habit-forming and eventually lose their effect.
Many patients may also be helped by an anti-depressant drug even if there is no depression. Some of the older anti-depressants (e.g. amytryptyline) have been found to be effective for chronic (long-term) pain. They may also have a sedative effect and help to restore a sleep pattern. They will also help some people who have depression associated with the fibromyalgia. The benefit may not be immediate, so it is worth trying for at least a couple of months before deciding if they are helpful. Side-effects may occur more quickly than the benefits – usually drowsiness during the day. Your doctor will gradually raise the dose to an effective level.
Your doctor may also refer you to a physiotherapist for further information and advice about fibromyalgia. However, the most effective therapist will be you, yourself.
How you treat your fibromyalgia
It is worth facing up to the fact that fibromyalgia can be severe, and may last for several years. The good news is that many people have learnt to control their condition so that it becomes part of life without ruining life. The advice that follows does work and will help if you persevere.
You can help yourself by finding out what helps you and gradually try to do more each day. You must be prepared for setbacks, and for the fact that treatment may hurt. Remember too that what helps one person with fibromyalgia may not work so well for another.
- Learn more about fibromyalgia from this booklet and find out if there is a local support group in your area. Sharing the frustration of having this condition and knowing that other people out there have similar problems can help enormously.
- Ask your family to read this booklet and encourage them to discuss your condition with you. Their lives have changed too.
- Try the medication your doctor has to offer and then decide if you want to take it.
- Avoid drugs such as nasal decongestants. Don’t drink alcohol, tea or coffee late at night, as these may disturb your sleep. Relaxation and gentle exercise can help you sleep.
- Learn to take time out for yourself. Reduce muscle tension and stress. Learn to relax your mind and your muscles. Playing an audio tape on relaxation can also help.
- Identify the stresses and strains in your life so that you can learn to deal with them.
- Eat healthily and keep your weight down.
- Exercise progressively and strengthen your body. This means increasing the amount of exercise you do by a little bit at a time.
Research has shown that aerobic exercise improves fitness and reduces pain and fatigue in people with fibromyalgia. Aerobic exercise means doing enough to get you breathing heavily and your heart beating faster.
Swimming is one of the best forms of exercise for fibromyalgia. Many people who have not learned to swim find the effort to do so is well worthwhile.
Don’t be overambitious about your progress. Slow and steady is better. If you feel that walking down the road is more than you can manage, start by counting the houses you pass each day and after some time you will find you’re counting the streets. If you go swimming (and warmer water is more soothing), start just by standing and moving your arms and legs against the resistance of the water, then go on to widths, and eventually you could be doing lengths.
You must expect exercise to be painful initially and it may leave you in greater pain and fatigue later that day or the next. So build up your exercise at a rate you can cope with. Start gently and build up to at least three hours of exercise each week. It is often better to do ten minutes and have a break than to do an hour all in one go. If pain and tiredness are increased a lot, then don’t do quite so much the next day.
Gradually, your muscles will become stronger and there will be more muscle fibres to move your limbs smoothly and avoid jarring of tendons and ligaments. Exercise also promotes sleep and improves your sense of well-being.
Other forms of treatment
No particular diet has been shown to help fibromyalgia, but it is sensible to lose excess weight and to avoid drinking too much coffee and tea. Controlling your diet helps you feel in control of your body.
Treatments like massage, acupuncture, physiotherapy and manipulation from a chiropractor or osteopath can all soothe pain and improve morale, but the benefits may not be long-lasting. Only you can decide whether the benefits are worth the time and expense.
Exercise, sound sleep and dealing with physical or mental stress are the keys to releasing the pain and fatigue of fibromyalgia. Until research provides us with better answers you should aim for self reliance.
EEG – Electroencephalography. This is a technique for recording the electrical activity from different parts of the brain.
Ligaments – tough, fibrous bands anchoring the bones on either side of a joint and holding the joint together.
NSAIDs – non-steroidal anti-inflammatory drugs. A large family of drugs, prescribed for different kinds of arthritis which reduce inflammation and control pain, swelling and stiffness.