Fibromyalgia: Care Staff Guide to Widespread Pain and Fatigue

Fibromyalgia is a long-term condition that causes widespread pain, tiredness and a range of other symptoms. Because there is no test for it and its symptoms overlap with many other conditions, people can wait a long time for an answer and may feel that they are not believed. This guide, based on NHS information, explains what fibromyalgia is, how it can affect people and how care and support staff can offer practical, respectful help. It sits alongside our guides to ME/CFS and NICE guideline NG206 and restless legs syndrome, as the symptoms can overlap.

What is fibromyalgia?

The NHS describes fibromyalgia, also called fibromyalgia syndrome, as a long-term condition that causes pain all over the body. The exact cause is not known. The NHS says it is linked to abnormal levels of certain brain chemicals and changes in how the body processes pain signals, and that it may be triggered by an injury, infection or physical or emotional stress. Possible inherited genetic factors are also mentioned.

The condition affects people of any age but is more common in women, and it usually begins between about 25 and 55. The NHS states that some estimates suggest nearly 1 in 20 people have it to some degree.

Symptoms

The NHS lists the main symptoms as follows:

• Pain: widespread, often continuous, with extra sensitivity to touch
• Fatigue: from mild tiredness to severe exhaustion that can come on suddenly
• "Fibro-fog": trouble remembering or learning, poor concentration, and sometimes slowed or confused speech
• Sleep problems: waking up tired even after enough sleep
• Other symptoms: stiffness, headaches or migraines, irritable bowel symptoms, dizziness, trouble regulating temperature, restless legs, tingling or numbness, painful periods, anxiety and depression

Symptoms can fluctuate and may flare or ease unexpectedly. This unpredictability can make it hard for others to understand, and staff should take care not to doubt a person who seems well one day and unwell the next.

How it is diagnosed

The NHS says there is no specific test for fibromyalgia and that its symptoms overlap with other conditions, which can make it hard to identify. Diagnosis is therefore made by a clinician after considering the whole picture. If you support someone whose symptoms have not been properly assessed, encourage them to see their GP, as the NHS advises, and help them to describe their symptoms clearly.

Treatment and self-management

There is no cure, but the NHS says symptoms can be eased. Approaches it mentions include:

• exercise, which the NHS describes as especially helpful for reducing pain, along with relaxation techniques
• talking therapies such as cognitive behavioural therapy and acceptance and commitment therapy
• medicines, including antidepressants
• support from the charity Fibromyalgia Action UK, whose helpline is 0300 999 3333, and local support groups

The NHS also says that treatment can help but symptoms rarely disappear completely. This is important for staff, because the goal is usually to help the person live as well as possible rather than to "fix" the condition.

Practical support for care staff

• Believe the person. Pain that cannot be seen on a scan is still real. Dismissing it can make people feel isolated.
• Plan around good and bad days. Be flexible with activities and routines, and let the person pace themselves.
• Support gentle, regular activity. Because exercise can help, work with the person and their clinicians to find activity they can manage. Avoid pushing too hard on a bad day.
• Help with sleep. A calm bedtime routine and a comfortable environment may help.
• Allow extra time and repeat information. Fibro-fog can make it harder to remember instructions or follow conversations. Written reminders and patient explanations help.
• Watch mood. Low mood and anxiety are common. The NHS advises seeing a GP if you think you may be depressed. Our guide to depression screening in care homes explains how to spot and escalate low mood.
• Review pain carefully. Record pain levels and the effect on sleep and mobility, and share the records with the GP so that treatment can be reviewed.

When to get help

New or sudden symptoms, such as severe unexplained pain, weakness, loss of function or anything that seems different from the person's usual pattern, should not be assumed to be fibromyalgia. Ask a clinician to assess them. The NHS page on fibromyalgia does not give urgent help advice, so follow your own organisation's procedures, call NHS 111 for urgent advice and 999 in an emergency.

Frequently asked questions

Is fibromyalgia real if it does not show up on tests?

Yes. The NHS recognises it as a long-term condition, even though there is no specific test.

Can people with fibromyalgia exercise?

The NHS describes exercise as especially helpful for reducing pain, but it should be introduced gently and agreed with the person's clinician.

Does fibromyalgia go away?

There is no cure. The NHS says treatment can help, but symptoms rarely disappear completely.

Where can staff build their knowledge?

The health and social care learning available through Learnsignal CPD can help you keep your knowledge of long-term conditions up to date.

This article is general information for care staff, based on NHS information, and does not replace the advice of a person's own clinicians. If you are worried about someone's health right now, contact their GP, NHS 111 or, in an emergency, call 999.