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Fibromyalgia

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.

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.

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  • Symptoms 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

    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
  • Diagnosis 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 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.

  • Causes 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.

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  • Living with fibromyalgia 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 adviser may be a useful person to talk to about any changes that will help you in your workplace.

  • FAQs FAQs

    Can children get fibromyalgia?

    Answer

    Yes, you can get fibromyalgia at any age. However, in younger people the condition is more likely to get better with time.

    Explanation

    Some GPs won’t make a diagnosis of fibromyalgia in people under 18. One reason for this is that the symptoms of fibromyalgia can be similar to those of many other childhood or ‘growing up’ conditions. Your child’s GP may need to offer your child further tests or refer him or her to a paediatrician (a doctor who specialises in children’s health) before a diagnosis and treatment plan can be decided. Once fibromyalgia has been diagnosed and other conditions ruled out, you and your child can start to do a lot to help manage their symptoms. This may involve pacing your child’s activities so that he or she doesn’t do too much of one thing on any one day because this can lead to muscle strain and tiredness.

    It’s important to talk to your child’s school so that they understand that he or she has a condition that causes symptoms of pain and tiredness. Your child may need to have alternative arrangements made for attending school. Possible solutions to problems of tiredness and poor concentration at school include:

    • a shortened day or smaller timetable
    • planned rest breaks in a quiet area
    • work that can be done at home
    • using a laptop if his or her hands are too painful for much writing
    • having more lessons arranged in classrooms that are near each other so he or she doesn’t have to walk so far

    If I have severe fibromyalgia, can I work? If I can’t work, can I apply for any welfare benefits?

    Answer

    Working can be challenging if you’re often in pain and tired. However, if you have fibromyalgia, working can be beneficial for maintaining your physical abilities, self-esteem, confidence and social relationships. If you feel your only option is to stop working, you can apply for welfare benefits that are based on how much fibromyalgia affects your ability to work and take care of yourself.

    Explanation

    Before you decide that you have to stop working, it’s important to consider all your options and weigh up the pros and cons of not going to work anymore. A lack of routine, social interaction, physical and mental stimulation that can occur if you’re at home more can lead to other stresses that could make your symptoms worse.

    People with fibromyalgia who stop working may be more severely affected by their symptoms than people who continue to persevere in their jobs.

    Continuing to work may mean you need to talk to your employer about adaptations that you need. You may feel uncomfortable approaching your employer in this way, but if they are able to be flexible, you will be able to see the benefits. Staying in work may be difficult, but it could still be the best option.

    However, if fibromyalgia is severely affecting your daily life so that you’re unable to work, you may be eligible for welfare benefits.

    At present, there are a number of different types of benefits. These all have different criteria that you will need to meet. Current benefits you can apply for are:

    • Disability Living Allowance
    • Employment and Support Allowance
    • Attendance Allowance

    If you’re already on Incapacity Benefit, you can continue to claim this, so long as you still satisfy the requirements. However, if you have recently been diagnosed with fibromyalgia, you won’t be able to claim Incapacity Benefit because in January 2011 this benefit was replaced by the Employment and Support Allowance.

    Disability Living Allowance is also due to change to a different system called Personal Independence Payment in 2013.

    For more information about welfare benefits, see the Department for Work and Pensions website, your local job centre or Citizen’s Advice Bureau. They can all help with providing and completing the necessary forms.

    Is it possible to have both depression and fibromyalgia?

    Answer

    Yes, you may find you feel depressed alongside your other symptoms of fibromyalgia because these two conditions may be linked.

    Explanation

    Fibromyalgia has a range of symptoms, which can affect different aspects of your health and wellbeing. If you find it difficult to manage your symptoms, you may feel isolated by the condition, which may lead to depression. It’s also possible that whatever is causing your fibromyalgia also causes depression, such as low levels of certain brain chemicals. Visiting your GP for advice on ways to manage fibromyalgia or getting in touch with a support group may help you to find better ways of coping.

    You may find it difficult to stay positive when you’re in pain and feeling tired. You may find a short course of antidepressants helps to bring back some balance, but you will probably need to make some changes in the way you do things so that you can manage your fibromyalgia better in the long term.

    Won't exercise just make my pain from fibromyalgia worse?

    Answer

    Not usually. It has been shown that certain types of exercise can help to relieve some of the symptoms of pain that fibromyalgia causes. You may need to get advice about this from your GP or a physiotherapist (a health professional who specialises in maintaining and improving movement and mobility).

    Explanation

    Exercise is recommended if you have fibromyalgia. It may take a little while to find the type of exercise that brings you the most benefit. However, you may find that starting with some gentle stretching and building up to some short distance walking or water-based exercises are things you can do without aggravating your pain or making yourself more tired.

    A particular exercise regime that has been studied in people with fibromyalgia is t’ai chi. This low-impact, meditative form of exercise has been shown to improve symptoms in small groups of people who have fibromyalgia. You may need to pace your activities so that your pain or tiredness don’t become overwhelming. If you pace your exercise by doing a little every day, even on the bad days, you’re likely to feel fitter, more mobile and have more energy.

  • Resources Resources

    Further information

    Sources

    • Branco J, Bannwarth B, Failde I, et al. Prevalence of fibromyalgia: a survey in five European countries. Semin Arthritis Rheum 2010; 39(6):448–53. doi:10.1016/j.semarthrit.2008.12.003
    • Arnold L, Clauw D, McCarberg B, et al. Improving the recognition and diagnosis of fibromyalgia. Mayo Clin Proc 2011; 86(5):457–64. doi:10.4065/mcp.2010.0738
    • Kashikar-Zuck S, Lynch A, Slater S, et al. Family factors, emotional functioning, and functional impairment in juvenile fibromyalgia syndrome. Arthritis Rheum 2008; 59(10):1392–8. doi:10.1002/art.24099
    • Young people and fibromyalgia. Fibromyalgia Association UK. www.fmauk.org, accessed 24 October 2011
    • Häuser W, Eich W, Herrmann M, et al. Fibromyalgia syndrome: classification, diagnosis, and treatment. Dtsch Arztebl Int 2009; 106(23):383–91. doi:10.3238/arztebl.2009.0383
    • Patient booklet. Fibromyalgia Association UK. www.fmauk.org, accessed 23 November 2011
    • Fibromyalgia factsheet. Womenshealth.gov. www.womenshealth.gov, published 29 June 2010
    • Saxena A, Solitar B. Fibromyalgia: knowns, unknowns, and current treatment. Bull NYU Hosp Jt Dis 2010; 68(3):157–61. www.nyuhjdbulletin.org
    • Fibromyalgia. eMedicine. www.emedicine.medscape.com, published 14 October 2011
    • Fibromyalgia: guidance for health professionals. Fibromyalgia Association UK. www.fmauk.org, published 2009
    • Busch A, Webber S, Brachaniec M, et al. Exercise therapy for fibromyalgia. Curr Pain Headache Rep 2011; 15(5):358–67. doi:10.1007/s11916-011-0214-2
    • Häuser W, Klose P, Langhorst J, et al. Efficacy of different types of aerobic exercise in fibromyalgia syndrome: a systematic review and meta-analysis of randomised controlled trials. Arthritis Res Ther 2010; 12(3):R79. doi:10.1186/ar3002
    • Wang C, Schmid C, Rones R, et al. A randomized trial of tai chi for fibromyalgia. New Eng J Med 2010; 363(8):743–54. doi:10.1056/NEJMoa0912611
    • Joint Formulary Committee. British National Formulary. 62nd ed. London: British Medical Association and Royal Pharmaceutical Society of Great Britain; 2011
    • Study on sickness certification and return to work for chronic pain patients in general practice; report on findings for participants. www.fmauk.org, published 24 October 2010
    • Coping with the symptoms of fibromyalgia whilst working. Fibromyalgia Association UK. www.fmauk.org, published 27 September 2011
    • Financial support. Directgov. www.direct.gov.uk, accessed 24 November 2011
    • Activity scheduling. Fibromyalgia Association UK. www.fmauk.org, accessed 23 November 2011
    • Maletic V, Raison C. Neurobiology of depression, fibromyalgia and neuropathic pain. Front Biosci 2009; 14:5291–338. doi:10.1017/S0033291706009135
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    Produced by Krysta Munford, Bupa Health Information Team, August 2012.

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