Fibromyalgia

Fibromyalgia is a long-term condition that causes pain in many parts of the body. People with fibromyalgia often feel very tired, wake without feeling refreshed, and find it harder to concentrate or remember things.

Fibromyalgia affects people differently. You and your healthcare team can work out which symptoms matter most to you and which treatments are worth trying.

What happens in fibromyalgia?

Your nervous system receives signals from around your body and helps you interpret them. In fibromyalgia, this system appears to become more sensitive. Sensations that would usually cause little discomfort may feel painful, and existing pain may feel more intense.

This does not mean the pain is imagined. It means the way pain signals are processed has changed. Researchers do not yet fully understand why this happens. Sleep problems, illness, injury and other stresses may play a part for some people, while others cannot identify a particular starting point.

Fibromyalgia is not an autoimmune disease or a form of inflammatory arthritis. It can, however, occur alongside conditions such as rheumatoid arthritis or osteoarthritis. When that happens, each condition may need its own treatment.

What symptoms can fibromyalgia cause?

The main symptom is widespread pain. It may feel like an ache, burning, tenderness or soreness. The location and intensity can vary from day to day. Some people find that light pressure, clothing or touch feels uncomfortable.

Other common symptoms include:

• Fatigue: Feeling drained or having less energy than expected.
• Unrefreshing sleep: Sleeping for several hours but waking tired.
• Problems with concentration or memory: Sometimes called “fibro fog.”
• Stiffness: Often noticeable after rest or on waking.

Some people also have headaches, jaw discomfort, abdominal pain, constipation or diarrhoea, bladder symptoms, or sensitivity to light, noise or temperature. Anxiety and low mood may occur, particularly when pain and poor sleep have been difficult to manage.

Not everyone has all these symptoms. A new symptom should not automatically be attributed to fibromyalgia; tell your clinician if something has changed or concerns you.

Is fibromyalgia the same as arthritis?

No. Fibromyalgia can cause pain around joints, but it does not itself cause the swollen joints or joint damage seen in inflammatory arthritis. A person can have both fibromyalgia and arthritis, so it is important to assess new joint swelling or other signs of inflammation.

This distinction affects treatment. Medicines that control inflammation in rheumatoid arthritis do not treat fibromyalgia pain. Equally, treating fibromyalgia will not replace treatment for active arthritis.

How is fibromyalgia diagnosed?

There is no single blood test, scan or X-ray that confirms fibromyalgia. Your clinician will ask where you feel pain, how long it has been present, and whether you have fatigue, sleep difficulties or problems with thinking clearly. They will also ask how symptoms affect your daily life and examine you.

Blood tests or other investigations may be useful when your history or examination suggests another condition. For example, your clinician may consider anaemia, thyroid problems, inflammatory arthritis or a sleep disorder. Tests are chosen for your situation; a long list of tests is not necessary for everyone.

Normal tests do not make your symptoms any less real. Fibromyalgia is diagnosed from the overall pattern of symptoms and clinical assessment. It can be diagnosed even if you have another medical condition, provided that condition does not fully explain what you are experiencing.

An examination for specific “tender points” is not required to diagnose fibromyalgia.

Does fibromyalgia cause permanent damage?

Fibromyalgia itself does not usually damage joints, muscles or internal organs. It is not generally a life-threatening condition. Its effects on sleep, work, relationships and daily activities can nevertheless be substantial and deserve proper care.

Symptoms may improve or worsen over time. There is no reliable way to predict exactly how one person will do. The aim of treatment is to make life more manageable and help you do more of what matters to you.

How is fibromyalgia treated?

There is no single treatment that works for everyone. Treatment usually combines several approaches:

• Learning how fibromyalgia affects pain and sleep
• Gradually building an amount of physical activity you can sustain
• Improving sleep and addressing any separate sleep disorder
• Developing ways to manage the effect of pain on daily life
• Considering medication when its likely benefits outweigh its side effects

You do not need to change everything at once. Choosing one or two achievable goals with your healthcare team is often a practical starting point.

Why is physical activity recommended?

Regular activity is one of the most useful treatments for fibromyalgia. Over time, it can improve physical function and may reduce pain, fatigue and sleep difficulties. The starting level matters: doing too much too soon can leave you feeling worse and make it harder to continue.

Walking, cycling, swimming, water-based exercise, gentle strengthening, yoga or tai chi are possible options. Choose something you can do regularly and that fits your health and preferences. If activity is currently difficult, even a small amount is a valid starting point.

A practical approach is to:

• Begin with an amount you can manage comfortably.
• Repeat it regularly rather than doing a large amount only on good days.
• Increase it slowly when your current level feels sustainable.
• Adjust the plan if symptoms flare, then build up again when able.

Some temporary soreness can occur when you begin moving more. Severe or persistent worsening is a reason to review the plan, not a reason to push through regardless. A physiotherapist can help you choose and progress activities, particularly if you have other painful conditions or have been inactive for a long time.

What is pacing?

Pacing means balancing activity and rest so that you can be more consistent. On a good day, it may be tempting to catch up on everything at once. This can sometimes lead to several difficult days afterwards.

Try breaking large tasks into smaller parts, alternating demanding and easier activities, and taking short planned breaks. Pacing does not mean avoiding all activity. It helps you build a routine that you can maintain.

How can I improve my sleep?

Poor sleep and pain can reinforce each other. Helpful habits include keeping a fairly regular sleep and waking time, making your bedroom dark and comfortable, and giving yourself time to wind down before bed. If caffeine affects your sleep, avoid it later in the day.

Tell your clinician if you snore loudly, wake gasping, have an uncomfortable urge to move your legs at night, or remain very sleepy during the day. Problems such as sleep apnoea or restless legs syndrome may need their own assessment and treatment.

Sleep habits are useful, but they are not a test of willpower. If sleep remains poor, ask your healthcare team for help.

Can talking therapies help?

Yes. Therapies such as cognitive behavioural therapy (CBT) or acceptance and commitment therapy (ACT) can teach skills for living with persistent pain. They may help you manage disrupted sleep, stress, activity and the emotional impact of symptoms.

Being offered a talking therapy does not mean that the pain is “all in your head.” Fibromyalgia pain is real. These therapies offer practical ways to reduce how much it disrupts your life. They can be useful whether or not you have anxiety or depression.

If you do have anxiety or depression, treating it is worthwhile in its own right and may also make pain and sleep easier to manage.

Will I need medicine?

Medicine may be considered when symptoms continue to interfere with sleep or daily life. Some medicines used for fibromyalgia act on how the nervous system handles pain signals. Examples that a clinician might discuss include amitriptyline, duloxetine or pregabalin. The choice depends on your symptoms, other medical conditions, medicines you already take and possible side effects.

Some of these medicines are also used for depression or other conditions. Being prescribed one does not mean your clinician thinks your pain is caused by depression. A medicine may help one symptom more than another, and no medicine helps everyone. Your clinician should review whether it is giving you enough benefit to continue.

Because fibromyalgia is not primarily an inflammatory condition, anti-inflammatory pain medicines and steroids generally do not treat its underlying pain pattern. They may still have a role if you have another condition for which they are appropriate. Opioid pain medicines are generally avoided for fibromyalgia because long-term benefit is uncertain and harms can be substantial.

Do not start, stop or change a prescribed medicine without discussing the plan with your clinician.

Do I need a special diet or supplements?

There is no proven single diet or supplement that cures fibromyalgia. Regular meals and a balanced diet can support general health. If you notice that particular foods affect symptoms such as abdominal discomfort, discuss this with a clinician or dietitian before making major restrictions.

Be cautious about treatments advertised as a cure. A product described as “natural” can still cause side effects or interact with your medicines.

Who can help me manage fibromyalgia?

Your care may involve a primary care doctor, rheumatologist, physiotherapist, pain specialist, mental health professional or sleep specialist. You will not necessarily need to see all of them. The right team depends on your symptoms and whether another condition is present.

Tell your healthcare team what you most want to improve. For one person, the priority may be sleeping better; for another, it may be returning to work, walking regularly or managing daily tasks with less exhaustion. Specific goals make it easier to judge whether a treatment is helping.

What can I do when symptoms are worse?

Symptoms can vary, and difficult periods do happen. Consider whether there has been a change in sleep, activity, stress, illness or another health problem. Return temporarily to an activity level you can manage, keep some gentle movement in your day if possible, and use the strategies that have helped you before.

Contact your healthcare team if symptoms are persistently worse, your usual plan is no longer helping, or a symptom is new or different. Do not assume that every episode of pain is fibromyalgia.

When should I seek medical advice?

Arrange a medical review if you develop new swollen joints, persistent fever, unexplained weight loss, new weakness, or another symptom that does not fit your usual pattern. These symptoms may need a separate assessment.

Seek urgent medical care for severe chest pain, severe breathlessness, sudden one-sided weakness, or other symptoms that would normally require emergency attention.

If pain, poor sleep or low mood leaves you feeling unable to cope, tell a healthcare professional. If you feel at risk of harming yourself, seek urgent help immediately.

Questions worth asking at your next appointment

• What findings support my diagnosis?
• Could another condition also be contributing to my symptoms?
• Which symptom should we focus on first?
• What level of activity is a sensible starting point for me?
• Do my sleep problems need a separate assessment?
• Would physiotherapy, CBT or ACT be useful for me?
• If we try a medicine, what benefit should I expect and when will we review it?
• Which new symptoms should prompt me to return for assessment?

This information is general. Discuss your symptoms, diagnosis and treatment plan with your own healthcare team.