Fibromyalgia

What is fibromyalgia?

Fibromyalgia is a long-term condition that causes pain and tenderness all over your body.

Unlike arthritis, this isn’t because you have problems with your joints, bones or muscles. It’s thought to be caused by your nervous system in your brain and spine not being able to control or process pain signals from other parts of your body.

The condition is also linked to:

  • poor sleep
  • feeling you can’t concentrate or remember things
  • extreme and constant tiredness that doesn’t improve with sleep or rest - which is known as fatigue.

There can be many other symptoms that affect different parts of your body.

Who gets fibromyalgia?

It’s estimated that somewhere between 1.8 million and 2.9 million people in the UK have fibromyalgia.

It most commonly develops between the ages of 25 and 55, although children can also get it. It appears that more women are diagnosed with fibromyalgia than men.

Symptoms

The main symptoms of fibromyalgia are:

  • pain – you may feel as though you’ve got pain that spreads throughout your entire body, with certain parts – such as your neck and back – feeling particularly painful.
  • tiredness, fatigue and generally feeling like you have no energy
  • sleeping badly – waking up feeling unrested
  • aching and stiffness, which often feels worse during or after you’ve been active.

It’s common for your condition to flare-up, making your symptoms suddenly worse.

It can also cause:

  • forgetfulness or poor concentration
  • stress, worry or low mood
  • tingling, numbness or swelling of your hands and feet
  • headaches
  • restless legs syndrome – a tingling, uncomfortable feeling in your legs, especially at night
  • irritability, or feeling low or weepy
  • feeling like you urgently need to wee, especially at night
  • painful menstrual periods
  • diarrhoea, constipation and stomach pain – sometimes separately diagnosed as irritable bowel syndrome (IBS)
  • increased sensitivity to things like cold, sound, knocks and bumps
  • tender or overly sensitive joints and muscles.

The pain may feel like it’s affecting your whole body, or it may be particularly bad in just a few areas. Some people say their pain gets worse in extreme temperatures, such as very hot, cold or damp weather.

People often say that, besides the pain, fatigue is the worst part of fibromyalgia. This can make it difficult to think clearly or remember things properly and is sometimes called fibro fog or brain fog.

Causes

We don’t currently know the exact reason why people get fibromyalgia. But there does seem to be a common link with things such as arthritis, a traumatic event, or mental health issues.

Fibromyalgia isn’t caused by damage or an injury to the body. But it does increase the sensitivity of your nerve endings, which means you could feel pain from a small amount of pressure or minor knocks.

One theory is that the condition is caused by problems with a person’s central nervous system – which controls all the sensations and movements the body makes.

Studies have shown that parts of the brain that register pain react differently if you have fibromyalgia. This means you feel pain when other people just feel uncomfortable or stiff.

People with fibromyalgia often don’t get enough deep sleep. Research shows that lack of good quality sleep can make pain worse, and maybe even cause pain.

Pain, unhappiness, depression and stress can all make you sleep badly.

Symptoms often start after an illness, accident, or a time of emotional stress and anxiety.

When you’re low or depressed, your pain can also feel worse. At the same time, your pain can make you feel more stressed.

Unlike conditions, such as arthritis, the pain you feel with fibromyalgia isn’t caused by visible inflammation or damage to your body.

This doesn’t mean the symptoms of fibromyalgia are unreal or ‘all in your mind’. However, anxiety, physical or mental trauma, and sleep disturbance are all thought to play a part in the condition.

Fibromyalgia doesn’t appear to cause lasting damage to your body, but it’s important to stay physically active so your muscles don’t become weak. If your muscles become weak, you could cause lasting damage.

Diagnosis

Fibromyalgia can sometimes be difficult to diagnose, as the symptoms vary from person to person.

There are some common symptoms your doctor will look for to help diagnose fibromyalgia, including:

  • severe pain that has lasted three months or more
  • fatigue
  • regularly waking up feeling unrefreshed
  • problems with your memory and understanding.

It may help your doctor understand the problems you’re having if you make a list of any physical or psychological problems you’ve experienced. They will probably then carry out a physical examination.

There aren’t any specific blood tests, x-rays or scans to confirm a diagnosis of fibromyalgia. But, you might have blood tests to check for other conditions.

Many symptoms of fibromyalgia are similar to those of other conditions, such as rheumatoid arthritis, Sjögren’s syndrome (sher-grenz sin-drome) and an underactive thyroid gland.

Some people may be diagnosed and treated for one of these other conditions. It is also possible to have one of these conditions as well as fibromyalgia.

Your doctor may also suggest a referral to:

  • a rheumatologist – a doctor who specialises in conditions affecting the bones, joints and muscles. They may confirm your diagnosis.
  • a physiotherapist – who can suggest exercises and relaxation techniques
  • a clinical psychologist or counsellor – who may use methods such as cognitive behavioural therapy (CBT) and mindfulness
  • an occupational therapist – who can advise you on the best way to carry out daily activities and work around your condition
  • a community or hospital-based specialist pain clinic, or chronic fatigue service – who can help you manage your symptoms.

For more information about how these specialists could help you, see the treatment section below.

What does the future hold for me?

Because fibromyalgia’s symptoms vary from person to person, it’s difficult to predict how long you will have the condition and the impact it will have on your life.

Although there’s currently no cure, there are treatments, therapies and self-management techniques that can improve your quality of life.

Fibromyalgia doesn’t seem to cause long-term damage to your body. But it’s important to keep your muscles and joints strong through activity.

Gradually increasing how much exercise you do can also improve your symptoms.

Does it run in families?

We don’t know for sure whether fibromyalgia can run in families.

It’s thought that people can inherit genes that make them more likely to get fibromyalgia, and the condition can then be triggered by an injury, physical or psychological trauma, or stress.

Treatments

There are a number of ways your symptoms can be managed.

In many cases, fibromyalgia can be diagnosed and treated by your GP, without the need to see a specialist.

They can advise you on treatments and therapies that tackle specific symptoms. These may include drug treatments. Physical and psychological therapies can often be a more effective way of managing fibromyalgia than medication.

There are also many things you can do for yourself that can change the way your condition impacts upon your life.

How can I help myself?

Exercise

If you’re in pain, your instinct may be to avoid exercise or moving around too much. But keeping active is a really important part of the treatment for fibromyalgia and can prevent other health problems.

Your symptoms and general health can be improved by a combination of aerobic exercise and movements that improve your flexibility and strength.

Exercise has been proven to improve fatigue and our ability to control pain.

At first, you may find that your pain and tiredness become worse, particularly if you’re starting to exercise muscles that haven’t been used for a while. Try to do the same amount of exercise each day, so you build up your muscle strength and your stamina.

Then, after doing your routine of exercises for a couple of weeks, slowly increase the amount you do, this will improve your fitness, stamina and flexibility.

Research shows aerobic exercise improves your fitness and can also reduce the pain and fatigue of fibromyalgia. It should also improve your sleep and general wellbeing.

Aerobic

Aerobic exercise is anything that makes you a little out of breath and your heart beat faster.

Swimming is recommended for people with fibromyalgia. Taking a brisk walk and cycling can also help.

At home, you could step up and down your bottom step several times, or march on the spot to get your heart beating faster.

Strengthening exercises

Strengthening exercises help develop and build the muscles that move and protect your joints. They may be difficult at first but should become easier with practice.

Aim to do at least one session a day, either at home or in a gym. Ask a GP or physiotherapist for examples of strengthening exercises you could do at home.

You can also buy specially designed equipment, such as ankle weights. Begin with lighter weights, then move on to heavier ones, if you feel able to.

Strengthening equipment in a gym allows you to work your muscles by pushing or pulling against a resistance, such as weights or elastic ropes. You can ask an instructor for advice about using the equipment, if you’re not sure.

Stretching exercises

Stretching, or range of movement, exercises can increase your flexibility. You can do these anywhere. There are plenty of examples of exercises online, or you could ask a physiotherapist. Some people with fibromyalgia have found Tai chi and yoga help.

Diet and nutrition

There’s no particular diet that’s been proven to help fibromyalgia. However, it’s recommended that you keep to a healthy weight by eating a balanced diet, with plenty of fruit and vegetables.

Complementary treatments

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

Acupuncture, where special needles are inserted into the skin above pressure points, may help your pain for a short time. Massage can also be helpful for some people with fibromyalgia. However, the effects often don’t last long.

If you decide to try a complementary treatment, you should discuss it with you doctor first, in case it affects any other treatment you’re on.

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 only continue if you notice any improvement in your condition.

Sleep

Poor sleep appears to be a significant cause of fibromyalgia, so getting enough good-quality sleep is an important part of your treatment. Not only will it help with tiredness and fatigue, but it may also improve your pain.

Sleeping tablets are not normally recommended, as tolerance and addiction problems are common. But regular activity, particularly aerobic exercise, and cognitive behavioural therapy (CBT) have proven very effective for people with severely disrupted sleep.

It can also help to change your habits around bedtime. To help you get a better night’s sleep:

  • 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 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 caffeine in the eight hours before you go to bed.
  • Don’t drink alcohol close to bedtime.
  • Avoid eating main meals close to bedtime.
  • If you smoke, 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.
  • Don’t keep checking the time during the night.

What else can I do?

Because 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 your condition can help reduce your fears and anxiety.
  • Find a support group in your area or an online forum for people with fibromyalgia. Talking about your experiences with other people who understand can help.
  • Encourage your family and friends to learn more about your condition and to talk to you about it. You could show them this information. It’s especially important they understand how your pain affects you, even if you look well.
  • Find ways to talk about your feelings, such as anxiety or anger. Counselling or CBT can help – your GP will be able to refer you.
  • For ‘fibro fog’, some people find mental exercises like crosswords or jigsaw puzzles help. Do as much as you can to stimulate your brain.
  • Pick your best time of day to do anything needing concentration. Explain to others if fibromyalgia affects your memory.
  • Learn to pace yourself by breaking tasks into smaller chunks, giving yourself time to rest in between.
  • Stress and unhappiness can make fibromyalgia pain feel worse – addressing what’s making you feel that way could help.
  • Ask for help from people at your workplace, such as a friend, colleague or manager.
  • Working shorter hours, as well as adapting your desk, chair, computer and other working areas for comfort, can all help.
  • Ask an occupational therapist, your local Jobcentre Plus office or Citizens Advice service for advice. They can work with both you and your employer.
  • Applying heat with a hot water bottle, or having a hot bath or shower, can help pain and improve morning stiffness.
  • If you have a dry mouth, try a toothpaste containing sodium bicarbonate.
  • Some people have found meditation helps improve their pain.
  • Try the treatments your doctor offers and discuss which ones are helpful.

Physical therapies

Depending on how your fibromyalgia is affecting you, your doctor may refer you to a physiotherapist or occupational therapist.

Physiotherapy

Physiotherapy can help relieve the pain of fibromyalgia.

Physiotherapists are trained specialists who can help you stay active and independent. They will show you the best exercises to strengthen your muscles, without hurting yourself or putting your body under too much strain.

They can show you how something as simple as improving your posture can help your pain. They may also advise you on relaxation techniques which can be just as important as exercise when you’re dealing with fibromyalgia.

Your doctor can refer you to an NHS physiotherapist. In some areas you can refer yourself, but this may take a while.

It can be quicker to see a physiotherapist privately, but you would pay for the appointment. To find a private physiotherapist, visit the Chartered Society of Physiotherapy website.

Occupational therapy

Occupational therapy can help you manage your everyday activities around your fibromyalgia, without increasing your pain or overwhelming yourself.

Your occupational therapist may suggest new ways you can get things done. They may also teach you some relaxation techniques.

If you still find some activities difficult after you’ve made these changes, they may suggest equipment, known as aids and adaptations, to help you.

Your doctor can refer you to an occupational therapist or you can see one privately, for a fee.

To find a private occupational therapist, visit the Royal College of Occupational Therapists website.

If you’re having problems at work, your employer may have an occupational health team that could help you. Otherwise, you can contact a Jobcentre Plus office to ask for advice.

Pain clinics and pain management programmes

Pain clinics bring together the skills of a wide range of professionals, such as:

They can provide specific treatments or rehabilitation therapies that could reduce the effects of fibromyalgia.

A pain specialist may suggest you join a pain management programme, which brings together people with different long-term pain conditions. Pain management won’t take away your pain, but it can help you manage it better and reduce its impact on your life.

These sessions are often led by psychologists who specialise in helping people find ways to live with their pain. They are usually held in an outpatient clinic and run over several days or weeks.

Psychological therapies

Pain is never just a physical experience, especially if it lasts a long time. Pain can affect your mood and behaviour.

Psychological approaches to pain management try to address the emotional effects of your pain and the things that can make your pain worse. They help you look at how your pain affects your thoughts and habits, and how your emotions can affect your pain.

Therapies such as cognitive behavioural therapy (CBT), which is a talking therapy, try to reduce the overwhelming effect of problems such as stress, unhappiness and pain.

They aim to help you understand how you react to different problems by breaking them down into smaller, more manageable, chunks. This should help you change the way you react to them and the effect they have on you.

Making small changes to the way you react to a situation or problem can often improve both your emotional and physical health.

Psychological therapies can also include relaxation techniques and other ways to reduce your stress.

They encourage you not to be too hard on yourself, even when you feel frustrated, and to accept that sometimes there are limits to what you can do.

A number of healthcare professionals often have training in CBT, so you may not have to see a psychologist.

For more information about psychological therapies and CBT, the British Association for Behavioural & Cognitive Psychotherapies (BABCP) keeps a register of all accredited therapists in the UK.

Drug treatments

Your doctor can prescribe medications to help with the pain, sleep problems or depression you may be experiencing because of your fibromyalgia.

Drugs can’t treat fibromyalgia alone, but they can help reduce your symptoms to a level that will allow you to start some gentle physical activity and rehabilitation therapies.

All drugs have potential side effects. It’s important to talk to your doctor about how to get the best balance between pain relief and any unpleasant effects.

If you feel like a treatment isn’t helping you, talk to your doctor.

Neuromodulatory drugs

These are prescribed treatments, such as antidepressants, or drugs targeting nerve pain, including pregabalin and gabapentin. They were originally used to treat conditions such as depression and epilepsy but have since proved effective for treating fibromyalgia.

They work by changing how the brain and central nervous system process pain.

Antidepressant drugs

Antidepressants, such as low-dose amitriptyline or nortriptyline, can reduce pain and help you sleep. The dose they are prescribed at for pain treatment tends to be too low to treat depression. They can, however, help with low mood.

Some people say certain types, such as duloxetine, help relieve their pain and other symptoms.

Some antidepressants can make you feel sleepy, so avoid taking them before you drive, cycle or use heavy machinery. You usually need to take them about two hours before bedtime.

They may not seem to work straight away, you might need to take them for a few months before you feel their full benefits. Your doctor will gradually increase the dose to a level that works for you.

Pregabalin and gabapentin

Pregabalin and gabapentin are used to treat nerve pain and have been shown to help some people with fibromyalgia.

You are likely to be started on a low dose and, depending on how you respond to them, it will be increased gradually to a level that works for you.

They can cause side effects such as drowsiness, dizziness and weight gain, and it may take six weeks before you see any real differences in your pain.

Pregabalin and gabapentin are classed as controlled substances and will only be prescribed a month at a time.

Painkillers

Paracetamol

Paracetamol can ease pain for some people with fibromyalgia but doesn’t work for everybody.

Some people find drugs like co-codamol or co-dydramol help. These contain paracetamol and a low dose of a stronger opioid painkiller.

Co-codamol contains the opioid codeine and co-dydramol is made from an opioid called dihydrocodeine. Opioid-based painkillers can cause a number of side effects. They are only recommended for short-term use – usually no more than three days. This is because there’s a risk people could become addicted to them.

Opioids tend to mask pain and not resolve the problem causing it. There is evidence that long-term use of opioids may increase your pain because your body can build up a tolerance to them.

Tramadol

There have been a few small studies that show a drug called tramadol helps. Tramadol works partly as an opioid and partly as an antidepressant. However, your doctor may feel other drug treatments are safer and would help your condition more.

Tramadol is a controlled drug only available on prescription for short-term flare-ups. It can be addictive and people who take it are carefully monitored.

Research and new developments

Versus Arthritis is funding a number of research studies into the causes, effects and treatment of pain, and also fibromyalgia.

Within the research we support we are funding a study which aims to identify specific markers that could be used to develop a diagnostic blood test for fibromyalgia.

You can see all the research we fund on the our research pages.

Some examples of the research around fibromyalgia we’re funding include:

The Pain Centre Versus Arthritis

In partnership with the University of Nottingham and local NHS Trusts, Versus Arthritis supports the world’s first national centre for research into pain.

The aims of the centre are to improve our understanding of pain and ways to stop it, through existing and new treatments.

The centre has experts in rheumatology, neuroimaging, psychology, neuropharmacology, neurosciences and orthopaedic surgery.

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.