Fibromyalgia

Produced by Louise Abbott, Bupa Health Information Team, February 2012.

This factsheet is for people who have fibromyalgia, or who would like information about it.

Fibromyalgia is a chronic (long-term) pain condition. The pain is felt in many different places in the body. People with fibromyalgia often don’t sleep well so they feel very tired a lot of the time.

About fibromyalgia

Fibromyalgia is estimated to affect between two and five in 100 people. The true number of people with the condition may be greater because it can be difficult to diagnose. Although fibromyalgia is more common in people aged between 20 and 50, under 18s have also been diagnosed with the condition.

The main symptom of fibromyalgia is pain in many areas of your body – above and below your waist and on your left and right sides. The pain you have can vary from day to day, and the intensity and type of pain you have may differ from other people with fibromyalgia.

People with fibromyalgia will manage their symptoms differently. There are a variety of therapies available that can help you to manage your fibromyalgia symptoms. It’s important to use the available therapies to help you to stay in work, carry on exercising and to maintain contact with family and friends.

Your family, friends and work colleagues can help you in many ways as you learn to live with fibromyalgia. As well as helping you with tasks you find too painful or tiring to do sometimes, they may be able to support you in maintaining a healthy level of exercise. Symptoms of fibromyalgia can make you feel isolated, depressed or anxious so it’s important to take positive steps to overcome this.

Symptoms of fibromyalgia

Fibromyalgia can have a range of symptoms. You will need to have had symptoms for at least three months before your GP can make a diagnosis of fibromyalgia.

The main symptoms are:

• muscular pain felt in many areas of your body
• generally feeling stiff, especially when you wake up
• constant tiredness
• sleeping badly and waking unrefreshed

You may find you have other symptoms and related conditions that can be associated with fibromyalgia. These include:

• irritable bowel syndrome (IBS) – this is a condition that causes symptoms including pain in your abdomen (tummy), bloating, constipation or diarrhoea
• difficulty thinking clearly or remembering things
• anxiety and depression
• numbness, burning and tingling of your skin
• sensitivity to cold
• headaches
• jaw joint dysfunction, which causes pain in and around your jaw joint
• Raynaud’s phenomenon, which is a reduction in the blood supply to your fingers and toes – this usually causes them get very cold
• painful periods
• an irritable bladder, which is your bladder muscles contracting too often and can lead to urinary urgency – a very strong urge to pass urine

Causes of fibromyalgia

It’s not known what causes fibromyalgia. A number of theories and studies are currently being investigated to try to pinpoint the cause so that effective treatments can be developed.

Researchers have found that people with fibromyalgia have high levels of certain pain chemicals in their nervous system and low levels of chemicals that can damp down a pain response. For these reasons it seems possible that, if you have fibromyalgia, you have a heightened sense of pain that lasts longer than would be expected.

Fibromyalgia may run in families. You’re more likely to get fibromyalgia at some time in your life if one of your close relatives, such as your mother, already has it.

Many people who have fibromyalgia have experienced a traumatic event before the condition began, such as a car accident or serious illness. This may suggest that these events trigger the start of fibromyalgia.

Diagnosis of fibromyalgia

If you think you have fibromyalgia, see your GP. He or she will ask about your symptoms and examine you. Your GP may also ask you about your medical and family history.

Your GP may use specific ‘tender points’ to help in your diagnosis. He or she will put pressure on up to 18 different points on your body that have been found to be painful in people with fibromyalgia. If 11 or more of these points are painful, it’s possible you may have fibromyalgia.

There are no blood tests, X-rays or scans that can diagnose or rule out fibromyalgia. However, in many cases you may be offered blood tests to rule out other serious conditions that may have similar symptoms to fibromyalgia.

You may need to visit your GP more than once or be referred to a specialist before your diagnosis can be confirmed. This is because there are a number of other illnesses and conditions that have similar symptoms to fibromyalgia. Also, fibromyalgia and its related conditions usually ‘flare up’ so that you have good days and bad days. This can make it more difficult to get a definite diagnosis quickly.

You may be referred to a rheumatologist, a doctor who specialises in identifying and treating conditions that affect the musculoskeletal system, particularly the joints and surrounding tissues, for diagnosis and treatment.

Treatment of fibromyalgia

There are a number of ways to treat fibromyalgia and help to ease your symptoms. An important aspect of treating fibromyalgia is to continue working and to maintain regular exercise. Both these activities can be challenging if you’re having a particularly bad day with your fibromyalgia, but there are benefits in the long term if you can overcome this. You will probably find out over time what works best for you and that using a range of treatments is most helpful for improving your symptoms.

Self-help

Part of the treatment for fibromyalgia involves looking at how you do things and finding ways to make tasks more manageable. One way to do this is by ‘pacing’. This means working within your limits to do what you can without aggravating the pain or making yourself even more tired. On a good day you may feel you can catch up on many things you didn’t feel able to do on a bad day, but this can lead to cycle of doing too much in one go, followed by being able to do very little. The pacing approach helps to prevent this.

Using heat can help with your pain. Hot baths or showers, soaking your hands or feet in warm water or using heat pads on painful areas may help to reduce the pain and stiffness.

Learning a relaxation technique, using books, CDs or DVDs, may help ease the pain in your muscles and improve your sense of wellbeing.

Physical therapy

Doing some form of exercise every day has been shown to help relieve pain and stiffness, improve mobility and balance, as well as giving an increased sense of wellbeing. Starting to exercise when you’re in pain and feeling exhausted may, at times, seem like an impossible task. However, you can get advice from your GP or be referred to a physiotherapist (a health professional who specialises in maintaining and improving movement and mobility) to find ways that you can exercise safely and effectively. This may mean starting with a few minutes of gentle stretching and gradually building up the time you spend doing this each day.

Walking or water-based exercises are beneficial for people with fibromyalgia. Another exercise option that can have positive effects for some people is t’ai chi. This is a low-impact, meditative form of exercise. Doing 20 to 30 minutes of moderate intensity exercise (where you are not too out of breath and can still hold a conversation) two to three times a week will probably be enough.

Talking therapy

A talking therapy called cognitive behavioural therapy (CBT) may be useful for you. It helps to challenge negative thoughts, feelings and behaviours. You would be involved in setting your aims for how you hope CBT will help you and completing tasks set by your therapist.

Medicines

You may find over-the-counter painkillers, such as paracetamol and ibuprofen, helpful for relieving pain caused by fibromyalgia. However, these aren’t effective for everyone and using these on a regular basis in the long term isn’t recommended. You may need to be referred to a pain clinic for alternative pain medicine, such as weak opioids.

Other types of medicine, such as pregabalin, may help with both pain and tiredness. You will need a prescription from your GP for this.

You may be prescribed some types of antidepressant, for example amitriptyline or nortriptyline, at a low dose as these may be effective against fibromyalgia pain and improve your sleep.

Always ask your GP for advice and read the patient information leaflet that comes with your medicine.

Living with fibromyalgia

Your family and friends can help you in many ways as you learn to live with fibromyalgia. Encourage them to find out more about the condition with you so that they have a greater understanding of what you’re dealing with. As well as helping you with tasks you find too painful or tiring to do sometimes, they may be able to support you in your exercise goals. Symptoms of fibromyalgia can make you feel isolated, depressed or anxious so it’s important to maintain your social circle.

If your symptoms are very severe, you may feel that you have to stop working. However, this can increase your awareness of the pain and tiredness because you have fewer things to focus on. You may be able to take a short period of sick leave so that you can adjust to having fibromyalgia. An occupational health advisor may be a useful person to talk to about any changes that will help you in your workplace.

For answers to frequently asked questions on this topic, see FAQs.

For sources and links to further information, see Resources.