Fibromyalgia?

What is fibromyalgia?

Fibromyalgia is a name for widespread pain affecting the muscles but not the joints. It will not cause permanent damage to tissues but the symptoms may last for months or years. There are no outward signs of the condition and people with fibromyalgia often look well but feel awful. Because of this, other people may not appreciate the pain and tiredness you are suffering and this can cause additional distress. Fibromyalgia is a common condition and is sometimes so severe that it affects your work and your personal and social life. In fibromyalgia the tendons and ligaments, or fibrous tissues (fibro-), and the muscles (-my-) are affected by pain (-algia) and tenderness. The pain may feel as though it affects the whole body.

There are usually tender points 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. 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 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 clearer picture of what we mean by fibromyalgia, and the diagnosis is being made more often by rheumatologists and general practitioners (GPs).

What are the 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 the muscles around the 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 the limbs, neck and back.

Sometimes tiredness (fatigue) can be the most severe aspect of fibromyalgia. There may be overall tiredness and lack of energy, or muscular fatigue and loss of stamina. Either way, it can be difficult to climb the stairs, do the household chores, go shopping or go to work. Becoming less fit makes matters worse. Waking in the morning feeling unrefreshed is common.

Less frequent but still troublesome symptoms include:

poor circulation – tingling, numbness or swelling
of the hands and feet
headache, irritability or feeling low or weepy
forgetfulness or poor concentration
feeling an urgent need to pass water
irritable bowels (diarrhoea and abdominal pain).

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 and the effects of fibromyalgia can vary considerably, and this range of severity can cause problems in diagnosing the condition and lead to varying medical opinions. A particular feature of fibromyalgia is the need to have the symptoms recognised and to be taken seriously.

Is fibromyalgia similar to chronic or postviral fatigue (ME)?

The symptoms described in myalgic encephalomyelitis (ME) are often very similar to those in fibromyalgia except that ME sufferers can often recall a viral infection before symptoms appeared, and may have less pain. Many doctors use the term 'chronic fatigue syndrome' rather than ME. More needs to be known about these conditions before we are able to say whether they are the same thing.

How can fibromyalgia be treated?

There is no overnight cure for fibromyalgia but with the help of your doctor and family it is possible to find ways of managing your symptoms so that you can continue with your normal activities. Fibromyalgia may settle down by itself, but this can take weeks, months or even years. Your doctor may be able to help you by making the diagnosis of fibromyalgia and reassuring you that despite all the pain you don't have a condition that will cause permanent disability. You are no more likely to develop arthritis later on than anyone else. Your family can also help with understanding and encouragement.

Your doctor can prescribe a variety of medications which may help with the pain. These include painkillers such as paracetamol and non-steroidal anti-inflammatory drugs (NSAIDs) (of which there are many). A steroid injection in the affected area may give temporary relief if one or two places are particularly painful.

Your doctor can also try to help with the sleep disturbance. Sleeping in a soft collar can help 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 people with fibromyalgia can also be helped by an antidepressant drug. Some of the older antidepressants (e.g. amitriptyline) have been found to be effective for long-term (chronic) pain. They may also have a sedative effect and help to restore a sleep pattern. This can be helpful even if you do not have the depression which is often associated with fibromyalgia. The benefit may not be immediate, and you may notice side-effects – usually drowsiness during the day – before the benefits, so it is worth trying for at least a couple of months before deciding if they are helpful. Your doctor will gradually raise the dose to an effective level.

Your doctor may also refer you to a physiotherapist, an occupational therapist or a counsellor for further information and advice about fibromyalgia. However, the most effective therapist will be you, yourself.

How can I treat my own 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 they can continue to live their lives enjoyably. People with fibromyalgia tell us that the following advice does work and will help if you persevere.

Learn more about fibromyalgia (from this booklet and from other sources) 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 some people enormously.
Ask your family to read this booklet and, if you want to, encourage them to discuss your condition with you. Your illness will be affecting their lives as well and they will need to know how and when to help you.
Try the medication your doctor has to offer and then decide if you want to continue taking it.
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. Learn to relax your mind and your muscles. Playing music or an audio tape about relaxation techniques can also help.
Find more effective ways of communicating feelings such as anger. Counselling or cognitive behavioural therapy may help and your GP may be able to refer you.
Try to sort out any unhappiness or difficulties at home or at work.
Eat healthily and keep your weight down.