Fibromyalgia

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Introduction

Introduction

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • fatigue (extreme tiredness)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as "fibro-fog") - such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) - a digestive condition that causes stomach pain and bloating

If you think you have fibromyalgia, visit your GP. Treatment is available to ease some of its symptoms, although they're unlikely to disappear completely.

Read more about the symptoms of fibromyalgia.

What causes fibromyalgia?

The exact cause of fibromyalgia is unknown, but it's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

It's also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.

In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:

  • an injury or infection
  • giving birth
  • having an operation
  • the breakdown of a relationship 
  • the death of a loved one

Read more about the causes of fibromyalgia.

Who's affected?

Anyone can develop fibromyalgia, although it affects around seven times as many women as men. The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly.

It's not clear exactly how many people are affected by fibromyalgia, although research has suggested it could be a relatively common condition. Some estimates suggest nearly 1 in 20 people may be affected by fibromyalgia to some degree.

One of the main reasons it's not clear how many people are affected is because fibromyalgia can be a difficult condition to diagnose. There's no specific test for the condition, and the symptoms can be similar to a number of other conditions.

Read more about diagnosing fibromyalgia.

How fibromyalgia is treated

Although there's currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with.

Treatment tends to be a combination of:

Exercise in particular has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.

Read more about: 

Support groups

Many people with fibromyalgia find that support groups provide an important network where they can talk to others living with the condition.

Fibromyalgia Action UK is a charity that offers information and support to people with fibromyalgia. If you have any questions about fibromyalgia, call the charity's helpline on 0300 999 3333.

The charity also has a network of local support groups you may find helpful and a online community, where you can find out about news, events and ongoing research into the condition.

Another support group you may find useful is UK Fibromyalgia.

Symptoms of fibromyalgia

Symptoms of fibromyalgia

Fibromyalgia has many symptoms that tend to vary from person to person. The main symptom is widespread pain.

There may be periods when your symptoms get better or worse, depending on factors such as:

  • your stress levels
  • changes in the weather
  • how physically active you are

If you think you have fibromyalgia, visit your GP. Treatment is available to ease some of the symptoms, although it's unlikely they'll ever disappear completely.

The main symptoms of fibromyalgia are outlined below.

Widespread pain

If you have fibromyalgia, one of the main symptoms is likely to be widespread pain. This may be felt throughout your body, but could be worse in particular areas, such as your back or neck. The pain is likely to be continuous, although it may be better or more severe at different times.

The pain could feel like:

  • an ache
  • a burning sensation
  • a sharp, stabbing pain

Extreme sensitivity

Fibromyalgia can make you extremely sensitive to pain all over your body, and you may find that even the slightest touch is painful. If you hurt yourself - such as stubbing your toe - the pain may continue for much longer than it normally would.

You may hear the condition described in the following medical terms:

  • hyperalgesia - when you're extremely sensitive to pain
  • allodynia - when you feel pain from something that shouldn't be painful at all, such as a very light touch

You may also be sensitive to things such as smoke, certain foods and bright lights. Being exposed to something you're sensitive to can cause your other fibromyalgia symptoms to flare up.

Stiffness

Fibromyalgia can make you feel stiff. The stiffness may be most severe when you've been in the same position for a long period of time - for example, when you first wake up in the morning.

It can also cause your muscles to spasm, which is when they contract (squeeze) tightly and painfully.

Fatigue

Fibromyalgia can cause fatigue (extreme tiredness). This can range from a mild, tired feeling to the exhaustion often experienced during a flu-like illness.

Severe fatigue may come on suddenly and can drain you of all your energy. If this happens, you may feel too tired to do anything at all.

Poor sleep quality

Fibromyalgia can affect your sleep. You may often wake up tired, even when you've had plenty of sleep. This is because the condition can sometimes prevent you from sleeping deeply enough to refresh you properly.

You may hear this described as "non-restorative sleep".

Cognitive problems ('fibro-fog')

Cognitive problems are issues related to mental processes, such as thinking and learning. If you have fibromyalgia, you may have:

  • trouble remembering and learning new things
  • problems with attention and concentration
  • slowed or confused speech

Headaches

If fibromyalgia has caused you to experience pain and stiffness in your neck and shoulders, you may also have frequent headaches.

These can vary from being mild headaches to severe migraines, and could also involve other symptoms, such as nausea (feeling sick).

Irritable bowel syndrome (IBS)

Some people with fibromyalgia also develop irritable bowel syndrome (IBS).

IBS is a common digestive condition that causes pain and bloating in your stomach. It can also lead to constipation or diarrhoea.

Other symptoms

Other symptoms that people with fibromyalgia sometimes experience include:

Depression

In some cases, having the condition can lead to depression. This is because fibromyalgia can be difficult to deal with, and low levels of certain hormones associated with the condition can make you prone to developing depression.

Depression can cause many symptoms, including:

  • constantly feeling low
  • feeling hopeless and helpless
  • losing interest in the things you usually enjoy

If you think you may be depressed, it's important to get help from your GP or your fibromyalgia healthcare professional, if you've been seeing one.

Causes of fibromyalgia

Causes of fibromyalgia

It's not clear why some people develop fibromyalgia. The exact cause is unknown, but it's likely that a number of factors are involved.

Here are some of the main factors thought to contribute to the condition: 

Abnormal pain messages

One of the main theories is that people with fibromyalgia have developed changes in the way the central nervous system processes the pain messages carried around the body. This could be due to changes to chemicals in the nervous system.

The central nervous system (brain, spinal cord and nerves) transmits information all over your body through a network of specialised cells. Changes in the way this system works may explain why fibromyalgia results in constant feelings of, and extreme sensitivity to, pain.

Chemical imbalances

Research has found that people with fibromyalgia have abnormally low levels of the hormones serotonin, noradrenaline and dopamine in their brains.

Low levels of these hormones may be a key factor in the cause of fibromyalgia, as they're important in regulating things such as:

  • mood
  • appetite
  • sleep
  • behaviour
  • your response to stressful situations

These hormones also play a role in processing pain messages sent by the nerves. Increasing the hormone levels with medication can disrupt these signals.

Some researchers have also suggested that changes in the levels of some other hormones, such as cortisol (which is released when the body is under stress), may contribute to fibromyalgia.

Sleep problems

It's possible that disturbed sleep patterns may be a cause of fibromyalgia, rather than just a symptom.

Fibromyalgia can prevent you from sleeping deeply and cause fatigue (extreme tiredness). People with the condition who sleep badly can also have higher levels of pain, suggesting that these sleep problems contribute to the other symptoms of fibromyalgia.

Genetics

Research has suggested that genetics may play a small part in the development of fibromyalgia, with some people perhaps more likely than others to develop the condition because of their genes.

If this is the case, genetics could explain why many people develop fibromyalgia after some sort of trigger.

Possible triggers

Fibromyalgia is often triggered by a stressful event, including physical stress or emotional (psychological) stress. Possible triggers for the condition include:

  • an injury
  • a viral infection
  • giving birth
  • having an operation
  • the breakdown of a relationship
  • being in an abusive relationship
  • the death of a loved one

However, in some cases, fibromyalgia doesn't develop after any obvious trigger.

Associated conditions

There are several other conditions often associated with fibromyalgia. Generally, these are rheumatic conditions (affecting the joints, muscles and bones), such as:

  • osteoarthritis - when damage to the joints causes pain and stiffness
  • lupus - when the immune system mistakenly attacks healthy cells and tissues in various parts of the body
  • rheumatoid arthritis - when the immune system mistakenly attacks healthy cells in the joints, causing pain and swelling
  • ankylosing spondylitis - pain and swelling in parts of the spine
  • temporomandibular disorder (TMD) - a condition that can cause pain in the jaw, cheeks, ears and temples

Conditions such as these are usually tested for when diagnosing fibromyalgia.

Diagnosing fibromyalgia

Diagnosing fibromyalgia

If you think you have fibromyalgia, visit your GP. Diagnosing fibromyalgia can be difficult, as there's no specific test to diagnose the condition.

The symptoms of fibromyalgia can vary and are similar to those of several other conditions. 

During diagnosis, you'll be asked about how your symptoms are affecting your daily life. Your body will also be examined to check for visible signs of other conditions - for example, swollen joints may suggest arthritis, rather than fibromyalgia.

Ruling out other conditions

If your GP thinks you may have fibromyalgia, they'll first have to rule out all other conditions that could be causing your symptoms. These conditions may include:

Tests to check for some of these conditions include urine and blood tests, although you may also have X-rays and other scans. If you're found to have another condition, you could still have fibromyalgia as well.

Criteria for diagnosing fibromyalgia

For fibromyalgia to be diagnosed, certain criteria usually have to be met. The most widely used criteria for diagnosis are:

  • you either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas
  • your symptoms have stayed at a similar level for at least three months
  • no other reason for your symptoms has been found

The extent of the pain used to be assessed by applying gentle pressure to certain "tender points", where any pain is likely to be at its worst. However, this is less common nowadays.

Diagnosing other conditions

It's also possible to have other conditions alongside your fibromyalgia, such as:

If your symptoms suggest that you have another condition as well as fibromyalgia, you may need further tests to diagnose these. Identifying all possible conditions will help to guide your treatment.

Treating fibromyalgia

Treating fibromyalgia

Treatment for fibromyalgia tries to ease some of your symptoms and improve quality of life, but there's currently no cure.

Your GP will play an important role in your treatment and care. They can help you decide what's best for you, depending on what you prefer and the available treatments.

In some cases, several different healthcare professionals may also be involved in your care, such as:

  • a rheumatologist - a specialist in conditions that affect muscles and joints
  • a neurologist - a specialist in conditions of the central nervous system
  • a psychologist - a specialist in mental health and psychological treatments

Fibromyalgia has numerous symptoms, meaning that no single treatment will work for all of them. Treatments that work for some people won't necessarily work for others.

You may need to try a variety of treatments to find a combination that suits you. This will normally be a combination of medication and lifestyle changes.

Information and support

You may find it helpful to research fibromyalgia to improve your understanding of the condition. Many people also find support groups helpful. Just talking to someone who knows what you're going though can make you feel better.

You can visit UK Fibromyalgia's support group section for a list of fibromyalgia support groups across the country.

Fibromyalgia Action UK is a charity that offers information and support to anyone who has fibromyalgia. It has a telephone service (0844 887 2444) you can call with any questions about the condition. It also has a network of local support groups you may find helpful.

There's also an online community where you can find out about news, events and ongoing research.

Medication

You may need to take several different types of medicines for fibromyalgia, including painkillers and antidepressants. These are described below.

Painkillers

Simple painkillers that are available over the counter from a pharmacy, such as paracetamol, can sometimes help relieve the pain associated with fibromyalgia. However, these aren't suitable for everyone, so make sure you read the manufacturer's instructions that come with the medication before using them.

If over-the-counter painkillers aren't effective, your GP (or another healthcare professional treating you) may prescribe a stronger painkiller, such as codeine or tramadol.

However, these painkillers can be addictive and their effect tends to weaken over time. This means that your dose may need to be gradually increased and you could experience withdrawal symptoms if you stop taking them. Other side effects include diarrhoea and fatigue (extreme tiredness).

Antidepressants

Antidepressant medication can also help to relieve pain for some people with fibromyalgia. They boost the levels of certain chemicals that carry messages to and from the brain, known as neurotransmitters.

Low levels of neurotransmitters may be a factor in fibromyalgia, and it's believed that increasing their levels may ease the widespread pain associated with the condition.

There are different types of antidepressants. The choice of medicine largely depends on the severity of your symptoms and any side effects the medicine may cause.

Antidepressants used to treat fibromyalgia include:

A medication called pramipexole, which isn't an antidepressant, but also affects the levels of neurotransmitters, is sometimes used as well.

Antidepressants can cause a number of side effects, including:

  • feeling sick
  • dry mouth
  • drowsiness
  • feeling agitated, shaky or anxious
  • dizziness
  • weight gain
  • constipation

For information on the side effects of your particular medication, check the patient information leaflet that comes with it.

Medication to help you sleep

As fibromyalgia can affect your sleeping patterns, you may want medicine to help you sleep. If you're sleeping better, you may find that other symptoms aren't as severe.

Speak to your GP if you think you could benefit from a medicine like this. They may recommend an over-the-counter remedy, or prescribe a short course of a stronger medication. Some antidepressants may also improve your sleep quality.

Read more about treating insomnia for information on good sleeping techniques and medicines to help you sleep.

Muscle relaxants

If you have muscle stiffness or spasms (when the muscles contract painfully) as a result of fibromyalgia, your GP may prescribe a short course of a muscle relaxant, such as diazepam.

These medicines may also help you sleep better because they can have a sedative (sleep-inducing) effect.

Anticonvulsants

You may also be prescribed an anticonvulsant (anti-seizure) medicine, as these can be effective for those with fibromyalgia.

The most commonly used anticonvulsants for fibromyalgia are pregabalin and gabapentin. These are normally used to treat epilepsy, but research has shown they can improve the pain associated with fibromyalgia in some people.

Some common side effects of pregablin and gabapentin include:

  • dizziness
  • drowsiness
  • swelling of your hands and feet (oedema)
  • weight gain

Antipsychotics

Antipsychotic medicines, also called neuroleptics, are sometimes used to help relieve long-term pain. Studies have shown that these medications may help conditions such as fibromyalgia, but further research is needed to confirm this.

Possible side effects include:

  • drowsiness
  • tremors (shaking)
  • restlessness

Other treatment options

As well as medication, there are other treatment options that can be used to help cope with the pain of fibromyalgia, such as:

  • swimming, sitting or exercising in a heated pool or warm water (known as hydrotherapy or balneotherapy)
  • an individually tailored exercise programme
  • cognitive behavioural therapy (CBT) - a talking therapy that aims to change the way you think about things, so you can tackle problems more positively
  • psychotherapy - a talking therapy that helps you understand and deal with your thoughts and feelings
  • relaxation techniques
  • psychological support - any kind of counselling or support group that helps you deal with issues caused by fibromyalgia 

See self-help for fibromyalgia for more information about exercise and relaxation techniques.

Alternative therapies

Some people with fibromyalgia try complementary or alternative treatments, such as: 

There's little scientific evidence that such treatments help in the long term. However, some people find that certain treatments help them to relax and feel less stressed, allowing them to cope with their condition better.

Research into some complementary medicines, such as plant extracts, has found they're not effective in treating fibromyalgia. If you decide to use any complementary or herbal remedies, check with your GP first. Some remedies can react unpredictably with other medication, or make it less effective.

Treating other conditions

If you've been diagnosed with fibromyalgia and another condition, such as depression or irritable bowel syndrome (IBS), you may need to have separate treatment for these. For example, additional counselling or medication may be recommended. 

Read more about: 

Self-help for fibromyalgia

Self-help for fibromyalgia

If you have fibromyalgia, there are several ways to change your lifestyle to help relieve your symptoms and make your condition easier to live with.

Your GP, or another healthcare professional treating you, can offer advice and support about making these changes part of your everyday life.

There are organisations to support people with fibromyalgia that may also be able to offer advice. Visit UK Fibromyalgia's support group section for a list of support groups across the country. You may also find it helpful to talk to other people with fibromyalgia on this online community.

Below are some tips that may help relieve symptoms of fibromyalgia. You can also read more information about living with pain.

Exercise

As fatigue (extreme tiredness) and pain are two of the main symptoms of fibromyalgia, you may find that you're not able to exercise as much as you'd like. However, an exercise programme specially suited to your condition can help you manage your symptoms and improve your overall health.

Your GP or physiotherapist (healthcare professional trained in using physical techniques to promote healing) can design you a personal exercise programme, which is likely to involve a mixture of aerobic and strengthening exercises.

Aerobic exercise

Aerobic activities are any kind of rhythmic, moderate-intensity exercises that increase your heart rate and make you breathe harder. Examples include:

  • walking
  • cycling
  • swimming

Research suggests that aerobic fitness exercises should be included in your personalised exercise plan, even if you can't complete these at a high level of intensity. For example, if you find jogging too difficult, you could try brisk walking instead.

A review of a number of studies found that aerobic exercises may improve quality of life and relieve pain. As aerobic exercises increase your endurance (how long you can keep going), these may also help you function better on a day-to-day basis. 

Resistance and strengthening exercises

Resistance and strengthening exercises are those that focus on strength training, such as lifting weights. These exercises need to be planned as part of a personalised exercise programme; if they aren't, muscle stiffness and soreness could be made worse.

A review of a number of studies concluded that strengthening exercises may improve:

  • muscle strength
  • physical disability
  • depression
  • quality of life

People with fibromyalgia who completed the strengthening exercises in these studies said they felt less tired, could function better and experienced a boost in mood.

Improving the strength of your major muscle groups can make it easier to do aerobic exercises.

Read more information and advice on health and fitness.    

Pacing yourself

If you have fibromyalgia, it's important to pace yourself. This means balancing periods of activity with periods of rest, and not overdoing it or pushing yourself beyond your limits.

If you don't pace yourself, it could slow down your progress in the long term. Over time, you can gradually increase your periods of activity, while making sure they're balanced with periods of rest.

If you have fibromyalgia, you will probably have some days when your symptoms are better than others. Try to maintain a steady level of activity without overdoing it, but listen to your body and rest whenever you need to.

Avoid any exercise or activity that pushes you too hard, because this can make your symptoms worse. If you pace your activities at a level that's right for you, rather than trying to do as much as possible in a short space of time, you should make steady progress.

For example, it may help to start with gentler forms of exercise - such as tai chiyoga and pilates - before attempting more strenuous aerobic or strengthening exercises.

Relaxation

If you have fibromyalgia, it's important to regularly take time to relax or practice relaxation techniques. Stress can make your symptoms worse or cause them to flare up more often. It could also increase your chances of developing depression.

There are many relaxation aids available, including books, tapes and courses, although deep-breathing techniques or meditation may be just as effective. Try to find time each day to do something that relaxes you. Taking time to relax before bed may also help you sleep better at night.

Talking therapies, such as counselling, can also be helpful in combating stress and learning to deal with it effectively. Your GP may recommend you try this as part of your treatment.

Read more about stress management.

Better sleeping habits

Fibromyalgia can make it difficult to fall asleep or stay asleep (known as insomnia). If you have problems sleeping, it may help to:

  • get up at the same time every morning
  • try to relax before going to bed
  • try to create a bedtime routine, such as taking a bath and drinking a warm, milky drink every night
  • avoid caffeine, nicotine and alcohol before going to bed
  • avoid eating a heavy meal late at night
  • make sure your bedroom is a comfortable temperature, and is quiet and dark
  • avoid checking the time throughout the night

Read more insomnia self-help tips.