• Fibromyalgia

    Fibromyalgia is a long-term (chronic) condition that can cause pain and tenderness over much of the body. It’s quite common – up to 1 person in every 25 may be affected.

    In the past, other terms were used to describe the condition, including muscular rheumatism and fibrositis. The condition may even have been misdiagnosed as degenerative joint disease or an inflammatory condition. More recently, research has provided a much clearer picture of what fibromyalgia is and how it can affect your life. For example, we now know fibromyalgia isn’t linked to inflammatory or degenerative arthritis even though the symptoms may sometimes be very similar.

  • Symptoms of Fibromyalgia

    The symptoms of fibromyalgia can include:

    • Widespread pain, often made worse by sustained activity
    • Tiredness (fatigue) or lack of energy
    • Sleep disorders
    • Headaches
    • Irritability, feeling low or weepy
    • Irritable or uncomfortable bowels
    • Forgetfulness or poor concentration
    • Increased sensitivity (to cold, sound, knocks and bumps)
    • Tender (overly sensitive) joints and muscles
    • Increased stress, worry or low mood
  • How is fibromyalgia diagnosed?

    Fibromyalgia is often difficult to diagnose as the symptoms vary considerably and could have other causes. The symptoms can be similar to those of other conditions, for example an underactive thyroid gland (hypothyroidism) or autoimmune conditions such as rheumatoid arthritis. At present, there aren’t any specific blood tests, x-rays or scans that can confirm a diagnosis of fibromyalgia – in fact, typically, people with fibromyalgia will have normal results in all of these tests. Your doctor may suggest you have blood tests to help rule out other causes of your symptoms and so support a diagnosis of fibromyalgia.

    Until recently, the diagnosis of fibromyalgia was based on the presence of specific tender points in certain areas of the body. However, guidelines released in 2010 recommend that healthcare professionals should now consider the following features when making a diagnosis:

    • Widespread pain lasting three months or more
    • Fatigue and/or waking up feeling un refreshed
    • Problems with thought processes like memory and understanding (cognitive symptoms)
  • Cause of Fibromyalgia

    The exact causes of fibromyalgia aren’t known. No specific physical cause has been found. This doesn’t mean the symptoms are unreal or ‘all in the mind’, but anxiety, physical or mental trauma, and sleep disturbance are thought to play a part.

    People with fibromyalgia experience increased sensitivity to pressure or minor knocks that wouldn’t normally be painful. This may be related to chemical changes in the body’s pain pathways. The pain isn’t caused by inflammation or degenerative processes, and fibromyalgia doesn’t cause any lasting damage to the body. However, trying to keep active can help to avoid secondary problems caused by weakening of the muscles (deconditioning).

  • Outlook of Fibromyalgia

    Fibromyalgia is a long-term (chronic) condition, and recovery varies from person to person. There’s no known cure, but there are treatments, therapies and self-management techniques which can help to improve your symptoms.

  • Treatment Options

    Although there’s no cure for fibromyalgia at present, there are drug treatments and therapies that many people find helpful. In most cases, fibromyalgia can be diagnosed and managed by your GP without the need to refer you to a specialist.

    Self- management plays a very important part in dealing with fibromyalgia and the symptoms it causes, but the healthcare team will be able to offer support with this, which may include:

    • Long-term management strategies
    • Medications, which some people find helpful to ease pain and/or improve sleep
    • Psychological therapies, which can help with relaxation, stress management and coping strategies
    • Physiotherapy to help keep you mobile
    • Occupational therapy, which can help with techniques for managing daily activities
  • Self-help in Fibromyalgia

    Try these self-help tips to help ease your symptoms:

    • Learn about and understand your condition
    • Use psychological and physical techniques to reduce tension in the body and self-directed anger or frustration
    • Pace your daily activities
    • Follow a graded program of physical activity (for example swimming, walking or cycling), starting gently and gradually building up
    • Share your experiences with other people
    • Tackle any stress or unhappiness at home or at work
    • Avoid tea, coffee (and any other forms of caffeine) and alcohol close to bedtime
    • Eat a balanced diet and keep to a healthy weight
    • Stop smoking
  • Symptoms of fibromyalgia

    Usually there are no outward signs of the condition. Widespread pain, fatigue and sleep disturbance are the main symptoms of fibromyalgia, but the effects of these symptoms vary from person to person and from day to day. Many people have flare-ups from time to time when the symptoms become suddenly worse.

    People with fibromyalgia often say that fatigue is the worst part of the condition and that they can’t seem to think clearly or remember things properly (sometimes this is called ‘fibrofog’ or ‘brainfog’). The pain may feel as though it affects your whole body, or it may be particularly bad in just a few areas. Some people find that the pain is worse in extremes of temperature such as very hot, cold or damp weather

    Less frequent symptoms of fibromyalgia include:

    • Poor circulation – tingling, numbness or swelling of the hands and feet
    • Headaches
    • Irritability or feeling miserable
    • Feeling an urgent need to urinate, especially at night
    • Irritable or uncomfortable bowels (diarrhoea or constipation and abdominal pain) sometimes separately diagnosed as irritable bowel syndrome (IBS)
  • Diagnosis of fibromyalgia

    Fibromyalgia is often difficult to diagnose as the symptoms vary considerably and could have other causes. The symptoms can be similar to those of other conditions, for example an underactive thyroid gland (hypothyroidism) or autoimmune conditions such as rheumatoid arthritis. At present, there aren’t any specific blood tests, x-rays or scans that can confirm a diagnosis of fibromyalgia – in fact, typically, people with fibromyalgia will have normal results in all of these tests. Your doctor may suggest you have blood tests to help rule out other causes of your symptoms and so support a diagnosis of fibromyalgia.

    Until recently, the diagnosis of fibromyalgia was based on the presence of specific tender points in certain areas of the body. However, guidelines released in 2010 recommend that healthcare professionals should now consider the following features when making a diagnosis:

    • Widespread pain lasting three months or more
    • Fatigue and/or waking up feeling unrefreshed
    • Problems with thought processes like memory and understanding (cognitive symptoms)
  • Causes of fibromyalgia

    We don’t yet know exactly what causes fibromyalgia, but research suggests that there’s an interaction between physical, neurological and psychological factors. The pain we feel is often affected by our emotions and moods – depression or stress can make the pain feel worse. At the same time, being in pain can lead to stress, worry and low mood.

    Usually people feel pain when an area of their body is damaged (as in arthritis) or suffers a physical injury. The pain people with fibromyalgia feel is different because it’s not caused by damage or injury to the area that’s hurting. Instead, there’s a problem with the way the brain and nervous system process pain from that area. This doesn’t mean that the pain is any less real, but because it’s not due to damage or injury that can be healed, there’s no easy way to stop the pain. This is why fibromyalgia pain is long-lasting (chronic).

    Research has also shown that people with fibromyalgia are more sensitive to physical pressure. This means that what would be a relatively minor knock for most people could be extremely painful for someone with fibromyalgia. While this increased sensitivity isn’t fully understood, it’s thought that it’s also related to changes in the way the nervous system processes pain. In fact, some researchers have shown using special brain scans that these processes are altered in people with fibromyalgia.

    Sleep disturbance may also contribute to this increased sensitivity. Brainwave studies show that people with fibromyalgia often lose deep sleep. A number of things may lead to sleep disturbance, such as:

    • Pain from an injury or another condition such as arthritis
    • Stress at work or strain in personal relationships
    • Depression brought on by illness or unhappy events

    People with fibromyalgia quite often report that their symptoms started after an illness or accident, or following a period of emotional stress and anxiety. However, others can’t recall any particular event leading up to the development of their symptoms.

    Not surprisingly, a combination of pain, sleep disturbance and anxiety or depression can turn into a vicious circle. Poor sleep pattern will contribute to the severe tiredness that often goes with fibromyalgia.

  • What are the associated conditions?

    Some people who have fibromyalgia also report being affected by some of the following conditions:

    • Chronic tiredness (fatigue)
    • Depression and anxiety
    • Headaches
    • Joint pain in various parts of the body
    • Spasms in either or both legs (restless leg syndrome)
    • Dry eyes – sometimes your doctor may recommend tests to check whether this is caused by siogren’s syndrome
    • Irritable bowel syndrome (IBS)
  • Medications can ease symptoms for some people

    However it’s important to keep as active as you can in order to avoid weakening of the muscles (deconditioning), which could lead to secondary problems.

    • Problems with the joint connecting the jawbone to the skull, causing pain in the jaw and areas nearby (temporomandibular joint disorder or TMJD)
    • Underactive thyroid gland (hypothyroidism)
    • The symptoms of fibromyalgia are often very similar to the symptoms of chronic fatigue syndrome (previously known as myalgic encephalomyelitis or ME), though it’s not yet clear whether the two conditions are related. People with chronic fatigue syndrome can often recall a viral infection before their symptoms started. However, they may have less pain than people with fibromyalgia.

  • Treatments for fibromyalgia

    There’s no cure as yet for fibromyalgia, but there are ways of managing your symptoms. Your doctor will be able to suggest treatments and therapies to tackle specific aspects of the condition. These may include drug treatments but physical and other therapies are just as important – if not more so.

    Physical therapies

    Your doctor may refer you to a physiotherapist or occupational therapist for further treatment and advice.

    Physiotherapy

    Physiotherapy can help you to improve your posture, physical function and quality of life, and gradually become more active. Physiotherapists can also advise you about relaxation techniques.

    Occupational therapy

    Occupational therapy can help you to manage your everyday activities without increasing your pain or wearing yourself out. Your occupational therapist may suggest specific pacing approaches, changing the way you work, or using labour-saving gadgets. If you’re struggling at work your therapist can recommend adjustments that will help.

    Pain clinics and pain management programs

    Pain clinics bring together the skills of a wide range of professionals, including specialist pain consultants, physiotherapists, occupational therapists, psychologists, social workers and employment advisers. A pain specialist may suggest specific treatments which can help to reduce pain so that you can begin rehabilitation therapies offered by other members of the team.

    Pain clinics often offer a pain management program, usually on an outpatient basis, over several days or weeks. The program may not take the pain away but it can help to lessen the impact on your life. Group sessions may include people with other long-term pain conditions besides fibromyalgia. The sessions are often led by psychologists who can help you develop ways of coping with the pain and the anxiety that it can cause.

    Psychological therapies

    Pain is never a purely physical experience, especially if it lasts a long time. Pain can affect your mood, making you feel sad, anxious, frustrated, angry or afraid. Your emotional response to pain can affect your behavior. For example, fear that movement will increase your pain may lead you to avoid activity. This, in turn, can affect aspects of your physical health – for example as your muscles become weaker through lack of use.

    Psychological approaches to pain management aim to address the emotional aspects of pain. When thoughts, habits (behavior), physical sensations and emotions are so closely linked it can be overwhelming. Therapies such as cognitive behavioral therapies (CBT) often focus on separating out these different aspects of your experience of pain, breaking the problem down into more manageable chunks.

    Making a small change in one area, for example behaviour, can often improve both your emotional well-being and your physical health so that you can get more out of life. Many people feel doubtful about this approach at first but it has produced some good results.

    Psychological therapies also include techniques for relaxation, coping with stress, accepting that you can’t always do the things you want to, and not being too hard on yourself (self-compassion) even if you do feel frustrated.

    You probably won’t need to see a psychologist as other members of the healthcare team are often trained in these techniques.

    Drug treatments

    Your doctor can prescribe a variety of medications to help with pain, sleep disturbance or depression associated with fibromyalgia. Drug treatments won’t cure fibromyalgia and usually don’t completely get rid of the pain. However, they can be helpful in reducing the symptoms to a level that will enable you to start some gentle physical activity and rehabilitation therapies.

    As with all drugs, some people will have side- effects so it’s important to discuss with your doctor the best balance between pain relief and side-effects. As a general rule, drug treatments should be stopped unless they are giving continued benefit.

    • Paracetamol can ease pain for some people but doesn’t work for everybody. Some people find drugs like co-codamol or co-dydramol useful. These contain paracetamol plus a low dose of a stronger opioid painkiller such as codeine. Drugs containing codeine or dihydrocodeine can cause side-effects including constipation and are recommended for short-term use only (usually no more than three days) because of a risk of dependency
    • Opioid drugs are painkillers used for moderate to severe pain, although there’s little research evidence that they’re helpful overall in fibromyalgia. Opioids should be used sparingly, if at all, in chronic pain because of the risk of long-term side-effects and because they may cause dependence and can be difficult to stop
    • There are a few small studies showing benefit for some people with a drug called tramadol, which works partly like an opioid and partly like an antidepressant. The prescribing of tramadol is regulated and is best used for short-term flare-ups only

    • Capsaicin gel or non-steroidal anti-inflammatory gelsrubbed into the painful areas may help you, but there’s no convincing evidence that they’re effective in most people with fibromyalgia, and they may not be practical as many different areas of your body can be affected at the same time
    • Antidepressant drugs such as low-dose amitriptylinecan reduce pain and help you sleep. They need to be taken in the evening – usually 2–3 hours before bedtime. Your doctor will gradually increase the dose to an effective level. Antidepressants can help with low mood and certain types including duloxetine have also been shown to help pain and other symptoms in some people. They may not work straight away, so you may need to try them for a few months to see whether they help
    • Drugs such as pregabalin and gabapentin are used to treat nerve pain and have been shown to help some people with fibromyalgia. They are usually started at a low dose and then gradually increased depending on how you respond to them. It may take six weeks to assess whether they’re helpful. They can cause side-effects such as dizziness and weight gain
    • Antidepressant drugs such as low-dose amitriptylinecan reduce pain and help you sleep. They need to be taken in the evening – usually 2–3 hours before bedtime. Your doctor will gradually increase the dose to an effective level. Antidepressants can help with low mood and certain types including duloxetine have also been shown to help pain and other symptoms in some people. They may not work straight away, so you may need to try them for a few months to see whether they help
  • Self-help and daily living

    Many people with fibromyalgia have learnt to manage their condition so that they can continue to live their lives enjoyably despite their symptoms. The following sections look at some of the things that might help.

  • Exercise

    If you’re in pain your instinct may be to avoid exercise, but lack of activity can lead to secondary problems as the muscles weaken. Keeping active, with a combination of some aerobic activity and exercises to improve your flexibility, will help to prevent this happening.

    Aerobic simply means increasing the circulation of oxygen through the blood, so any exercise that gets you breathing heavily and your heart beating faster is aerobic. Swimming is particularly recommended for people with fibromyalgia, but walking and cycling are also helpful. Build up your exercise at a rate you can cope with, pace yourself and be patient. You may find that the pain and tiredness become worse at first as you start to exercise muscles that haven’t been used for a while. Try and do the same amount of exercise each day so that you build up your muscle strength and stamina.

    Increasing your exercise little by little will also improve your fitness and flexibility. Yoga and t’ai chi have been shown to help some people with fibromyalgia.

  • Diet and nutrition

    No particular diet has been proven to help fibromyalgia, but we recommend keeping your weight within a healthy range by eating a balanced diet with plenty of fruit and vegetables.

  • Complementary medicines

    Some people with fibromyalgia find that complementary medicines help their symptoms.

    Treatments like massage and accupuncture may temporarily ease the pain and discomfort, although they often don’t result in long-term relief of symptoms. capsaicin and homoeopathy might have some benefit for people with fibromyalgia – although applying capsaicin cream might not be practical if you have widespread pain. Generally speaking complementary and alternative therapies are relatively safe, although there are some risks associated with specific therapies. The medicines and therapies mentioned above are reported to have few potential side-effects.

    It’s important to go to a legally registered therapist, or one who has a set ethical code and is fully insured. If you decide to try therapies or supplements you should be critical of what they’re doing for you, and base your decision to continue on whether you notice any improvement.

  • Sleep

    Poor sleep is a key symptom of fibromyalgia, so getting enough good-quality sleep is an important part of the treatment. Not only will it help with tiredness and fatigue but you may also find it helps with the pain. To make sure you get a better night’s sleep:

    • Make sure your bedroom is dark, quiet and a comfortable temperature
    • Try a warm bath before bedtime to help ease pain and stiffness
    • Develop a sleep routine, settling down and getting up at the same time each day
    • You may like to try listening to some soothing music before going to bed
    • Some gentle exercises may help reduce muscle tension, but it’s probably best to avoid more energetic exercise too close to bedtime
    • Keep a notepad by your bed – if you think of something you need to do the next day, write it down and then put it out of your mind
    • Avoid alcohol, tea or coffee (or any other form of caffeine) late at night
    • Try to avoid eating main meals close to bedtime
    • Try to stop smoking or at least don’t smoke close to bedtime
    • Try not to sleep during the day
    • Avoid watching TV and using computers, tablets or smartphones in your bedroom
    • Try not to keep checking the time during the night
  • What else can I do to ease my fibromyalgia?

    Fibromyalgia varies from person to person. We suggest you try some of the following tips to find out what works for you:

    • Learn about fibromyalgia. Understanding the condition can help to reduce any fear and anxiety about it
    • Find out if there’s a support group in your area, or think about joining an online fibromyalgia forum or expert patient programme. Discussing your experiences with others who have fibromyalgia often helps
    • Encourage your family and friends to find out more and discuss your condition with you – you could show them this information to help you explain your experiences. It’s especially important that they understand you may be in severe pain even if you look well
    • Practise simple changes in behaviour such as pushing through the pain until it stops you or trying to ignore the symptoms. Or listen to your body and be compassionate toward yourself as you would towards someone you care for
    • Find more effective ways of communicating feelings such as anxiety or anger. Counselling or CBT can help to break the vicious circle of anxiety, depression and pain and has helped many people keep their symptoms under control – your GP will be able to refer you
    • Unhappiness at home or work can make fibromyalgia pain feel worse. Addressing the causes of this unhappiness could help. Ask for help from people at your workplace, such as a friend, colleague or manager. You can also seek advice from experts such as occupational therapists, a Jobcentre Plus office and the Citizens Advice Bureau. They can work with you and your employer to find the best solution for everyone
    • Some people have found that meditation helps relieve their paint
    • Try the medications your doctor offers and discuss which ones are helpful
  • Glossary

    Acupuncture – A method of pain relief that originated in China. Very fine needles are inserted, virtually painlessly, at a number of sites on your skin (meridians) but not necessarily at the painful area. This interferes with pain signals to your brain and causes the release of natural painkillers (endorphins).
    Antidepressants – Drugs that are designed to relieve depression. There are many different antidepressant drugs, some of which are also used to relieve pain or to help with sleep disruption.
    Cognitive behavioural therapies (CBT) – A number of therapies based on the assumption that most of a person’s thought patterns and emotional or behavioural reactions are learned and can therefore be changed. The therapies aim to help people resolve difficulties by learning more positive thought processes and reactions.
    Fatigue – A feeling of weariness that’s more extreme than simple tiredness. It can affect you physically, but it can also affect your concentration and motivation, and often comes on for no apparent reason and without warning
    Inflammation - The body’s response to harmful stimuli such as infections, damaged cells or irritants.
    Nervous system – The network of nerves that send signals back and forth from the brain to different parts of the body.
    Occupational therapist – A trained specialist who uses a range of strategies and specialist equipment to help people to reach their goals and take part in the activities that are important to them. An OT may give practical advice on changing the way you do things or suggest equipment to help you.
    Physiotherapy – A therapy given by a trained specialist that helps to keep your joints and muscles moving, helps ease pain and keeps you mobile.
    Rheumatoid arthritis –An inflammatory disease affecting the joints, particularly the lining of the joint. It most commonly starts in the smaller joints in a symmetrical pattern – that is, for example, in both hands or both wrists at once.
    Sjögren’s syndrome - An autoimmune disorder that’s characterised by dry eyes and/or a dry mouth, aching and fatigue. This can occur on its own or may be secondary to another condition.