Fibromyalgia

Fibromyalgia: understanding the condition

This one-page summary brings together the symptoms, causes, diagnosis, treatment options and the practical things you can do day to day. Tap the image to open it full size if the print is small on your phone.

Understanding fibromyalgia

Fibromyalgia is a long term condition that causes pain and tenderness all over the body. Unlike arthritis, this is not because of a problem in your joints, bones or muscles. It is thought to happen because the nervous system in the brain and spinal cord is no longer controlling and processing pain signals from the rest of the body properly. Alongside pain, it is closely linked with poor sleep, difficulty concentrating or remembering, and a deep fatigue that does not improve with rest.

Why it happens

We do not yet know the exact cause. Fibromyalgia is not caused by damage or injury to the body, but it does increase the sensitivity of nerve endings, so light pressure or a minor knock can be genuinely painful. Brain imaging studies show that the areas which register pain behave differently in fibromyalgia, so you may feel pain where someone else would feel only stiffness or discomfort. People with fibromyalgia also tend to get less deep sleep, and poor quality sleep is known to make pain worse and may even help cause it. Symptoms often begin after an illness, an accident, or a period of emotional stress and anxiety. None of this means the symptoms are imagined. It simply means the problem sits in how pain is processed rather than in the tissues themselves.

How I reach the diagnosis

Fibromyalgia can be difficult to diagnose because symptoms differ so much from person to person. The pattern I look for is severe pain lasting three months or more, fatigue, regularly waking unrefreshed, and problems with memory or thinking clearly. It really helps if you bring a written list of the physical and emotional problems you have been having. I will then examine you.

There is no blood test, x-ray or scan that confirms fibromyalgia. Tests are used to rule out other conditions with similar symptoms, such as rheumatoid arthritis, Sjögren disease and an underactive thyroid gland. It is also possible to have one of those conditions as well as fibromyalgia, which is why careful assessment matters.

Depending on what you need, I may involve a physiotherapist for exercise and relaxation techniques, a clinical psychologist or counsellor for approaches such as cognitive behavioural therapy and mindfulness, an occupational therapist for daily activities and work, or a pain service for longer term symptom management.

What treatment looks like

There is no cure yet, but there is a great deal we can do to improve how you feel and function. Physical and psychological approaches are often more effective than medication, so I usually build the plan around them.

• Physiotherapy to keep you active safely, strengthen muscles without straining them, improve posture, and teach relaxation techniques.
• Occupational therapy to find easier ways of doing everyday tasks, adapt your workspace, and use aids where they help.
• Acupuncture, which has short term evidence in fibromyalgia and can help you get started with self management.
• Pain management programmes run by a team of pain specialists, physiotherapists, occupational therapists and psychologists. These do not remove pain, but they reduce its grip on your life.
• Psychological therapies such as CBT, which break overwhelming problems into smaller pieces and change how stress, low mood and pain feed each other.
• Medication, usually considered after exercise, psychological therapy or acupuncture have been tried. Low dose antidepressants such as amitriptyline or duloxetine are the recommended first choice for unexplained long term widespread pain. They are given at lower doses than for depression, may take a few months to show full benefit, and are often taken about two hours before bed as they can cause drowsiness.

What you can do yourself

• Keep moving, but pace it. Combine gentle aerobic activity such as swimming, brisk walking or cycling with stretching and strengthening. Pacing means balancing activity and rest so you do not overdo it on good days.
• Protect your sleep. A dark, quiet, comfortable bedroom, a regular bedtime and waking time, a warm bath to ease stiffness, no caffeine for eight hours before bed, no alcohol, heavy meals or screens close to bedtime, and no clock watching during the night.
• Eat well. No specific diet has been proven to treat fibromyalgia, but a balanced diet low in saturated fat, sugar and salt, plenty of fruit and vegetables, six to eight glasses of water a day, and a healthy weight all help.
• Use heat. A hot water bottle, hot bath or shower can ease pain and morning stiffness.
• Work with your fibro fog. Puzzles and crosswords, doing demanding tasks at your best time of day, and breaking work into smaller chunks with rests in between.
• Ask for support. Talk to family, friends and your workplace about how pain affects you even when you look well. Shorter hours or a better set up desk can make a real difference. Counselling can help with anxiety, low mood or anger.
• Be selective with complementary therapies. Massage or meditation help some people, though the effect of massage is often short lived. Tell me before starting anything new, use a properly registered therapist, and only continue if it is genuinely helping.

What the future holds

Because symptoms vary so much, I cannot predict exactly how long you will have fibromyalgia or how much it will affect you. What I can say is that it does not appear to cause lasting damage to the body, and that treatment, therapy and self management can meaningfully improve quality of life. Keeping muscles and joints strong through activity, and building up gradually, tends to improve symptoms over time.