What is fibromyalgia?

Fibromyalgia is a long-term (chronic) condition that can cause widespread 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.

We now know that fibromyalgia isn't linked to inflammatory or degenerative arthritis, even though the symptoms may sometimes be very similar.

Fibromyalgia in itself doesn't cause any lasting damage to the body's tissues. 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.

Symptoms

Usually there are no outward signs of fibromyalgia.

Most common symptoms of fibromyalgia

The main symptoms of fibromyalgia are:

  • widespread pain
  • extreme tiredness (fatigue)
  • sleep disturbance.

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 their 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 (this is sometimes 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 their pain feels worse in very hot, cold or damp weather.

Less common symptoms of fibromyalgia

Less frequent symptoms of fibromyalgia include:

  • poor circulation: tingling, numbness or swelling in 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).

Causes

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 anxiety can make the pain seem worse. At the same time, being in pain can lead to stress, worry or low mood.

Usually, people feel pain when part of the body is damaged (as in arthritis) or suffers a physical injury. The pain people with fibromyalgia feel is different because it's not directly 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 the pain is any less real, but because there’s no physical damage that can be healed there's no easy way to stop the pain. This is why fibromyalgia pain can be long-lasting (chronic).

Research has 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. This increased sensitivity isn't fully understood but it’s thought that it could be related to changes in the way the nervous system processes pain. 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 onset of symptoms.

In an experiment where healthy volunteers were woken during each period of deep sleep, a number of them developed the typical signs and symptoms of fibromyalgia.

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

Read more about pain and arthritis and sleep and arthritis.

Diagnosis

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 autoimmmune 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, and many people with fibromyalgia will have normal results in all these tests. However, your doctor may suggest you have blood tests to rule out other possible causes of your symptoms and so support a diagnosis of fibromyalgia.

Until recently, the diagnosis of fibromyalgia was made based on specific tender points in certain areas of your 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).

Treatment

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 or even more so.

Physical therapies

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

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

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.

Read more about living with arthritis.

Pain clinics and pain management programmes bring together the skills of a wide range of professionals including:

  • specialist pain consultants
  • physiotherapists
  • occupational therapists
  • psychologists
  • social workers
  • employment advisors.

A pain specialist may suggest specific treatments which can help reduce pain so that you can begin rehabilitation therapies offered by other members of the team.

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

Managing your symptoms

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 aerobic activity and exercises to improve your flexibility, will help prevent this happening. Exercise can also help you to get a better night's sleep.

'Aerobic' simply means increasing the circulation of oxygen through the blood, so any exercise that gets you breathing more 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 your pain and tiredness become worse at first as you start to exercise muscles that haven’t been used for a while. Try to 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.

Read more about exercise and arthritis.

Maria's story

Maria was diagnosed with fibromyalgia in 2012 having had symptoms, particularly in her back, neck and feet, for many years. She feels disappointed that it took so long to get a formal diagnosis and to find the best combination of treatments.

Maria admits that she has ups and downs with her condition: 'I've had to accept that my life has changed,' she says. Maria feels this is the key to learning to manage the condition, even if she does still need medications at times to help her through a bad patch.

'I'm very lucky that my family and my husband in particular are really supportive – and my young son too, although he does sometimes find it difficult to understand why we can't always do all the things that we'd like to together. Sometimes it comes down to a choice between going out and relying on my walking sticks or not going out at all. But as he grows up he's starting to understand a little bit more all the time.'

Maria’s fibromyalgia was diagnosed by a pain specialist – the second one she’d seen – who suggested a pain management programme. 'These programmes are fantastic,' she says. 'It’s all too easy to become isolated with this condition especially if you have to cancel social events because of it. Talking to other people who’ve gone through similar experiences, who really understand the problems you face, helps so much.'

Maria is so enthusiastic about pain management programmes that she’s become a voluntary tutor. 'It’s so good to see people on the courses grow and move on with their lives. The courses are also a good place to pick up tips on things like healthy eating and exercise – things you wouldn’t necessarily think about if you’re at home feeling ill.'

Talking about the condition can sometimes bring other benefits too: 'I was very open with my son’s school about the difficulties my fibromyalgia causes – and they’ve been really good about letting me park in the school grounds when I come to pick him up.'

Fatigue is often the worst aspect of fibromyalgia for Maria and this was especially challenging when her son was younger. Maria says she hasn’t slept well for many years and this has undoubtedly contributed to the absolute exhaustion she’s experienced at times. But she says she has found relaxation techniques have really helped her to manage stress and ‘fibrofog’.

Maria would strongly encourage anyone with fibromyalgia to consider a pain management programme: 'I don’t think there’s enough known about the availability of these courses, and it’s such a shame that courses sometimes have to be cancelled through lack of referrals.'

You can read more of our supporter stories on our Your stories page.