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Patient Booklet

What Is Fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue, recognised by the National Health Service (NHS) and Department for Work and Pensions (DWP).

The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

Fibromyalgia is a common illness. In fact, it is more common than rheumatoid arthritis and can even be more painful. Prevalence of Fibromyalgia: A Survey in Five European Countries (see www.fmauk.org/prevalence for details) put the prevalence of FM at between 2.9 and 4.7%. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.

If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.

Symptoms

Besides pain and fatigue fibromyalgia symptoms often include:

  • unrefreshing sleep – waking up tired and stiff
  • headaches – ranging from ordinary types to migraine
  • irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
  • cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
  • clumsiness and dizziness
  • sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
  • allergies

Diagnosis

Fibromyalgia is not new, but for most of the last century it was difficult to diagnose. Part of the problem has been that the condition could not be identified in the standard laboratory tests or x-rays. Moreover, many of its signs and symptoms are found in other conditions as well – especially in chronic fatigue syndrome (CFS).

Two Canadian doctors developed a way of diagnosing fibromyalgia in the 1970s and in 1990 an international committee published requirements for diagnosis that are now widely accepted. Once other medical conditions have been ruled out through tests and the patient’s history, diagnosis depends on two main symptoms:

  • pain in all four quadrants of the body for at least three months together with
  • pain in at least 11 out of 18 tender point sites when they are pressed. The “tender points”, or spots of extreme tenderness, are rarely noticed by the patient until they are pressed.

Recently this has been updated with the new ACR 2010 criteria to include more emphasis on the patient's history and the need for tender points removed. 

What Causes Fibromyalgia?

Fibromyalgia often develops after some sort of trauma that seems to act as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation or an emotional event. Sometimes the condition begins without any obvious trigger. The actual cause of fibromyalgia has not yet been found. Over the past several years, however, research has produced some insights into this puzzling condition. For instance, it has been known that most people with fibromyalgia are deprived of deep restorative sleep.

Current studies may find out how to improve the quality of sleep and some of the prescribed medicine is specifically aimed at addressing the lack of restorative sleep.

Research has identified a deficiency in Serotonin in the central nervous system coupled with a threefold increase in the neurotransmiter substance P, found in spinal fluid and which transmits pain signals.

The effect is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness. It is hoped that more research will discover the cause and result in more effective treatment.

Current Treatment

At the present time treatment for fibromyalgia aims at reducing pain and improving sleep. In other words, some of the symptoms are being treated, rather than the condition itself. See the current EULAR Recommendations for the Management of Fibromyalgia: www.fmauk.org/eular2016early with the original accessible at http://sh.fmauk.org/eular2016early

Pharmacological management

Over-the-counter medications may help relieve the pain of fibromyalgia but severe pain may require the expertise of a pain clinic. It is best to discuss any form of pain relief with your specialist or GP. It is most important to note that

medications work for some people and not others. Pharmacological management of FM in the UK often involves 'off-label' medications focused on the relief of discrete symptoms rather than treatment of the condition. A number of drug therapies have shown effectiveness in randomised clinical trials, leading to approval by the Food and Drug Administration in America of pregabalin, duloxetine and milnacipran for the treatment of fibromyalgia.

Medications most often prescribed for fibromyalgia are tricyclic drugs also used to treat depression although doses for fibromyalgia are much lower than for depression. In some cases these drugs will help both sleep and pain.

However, many people find available medications either insufficient to control their symptoms or difficult to tolerate due to a high incidence of adverse effects. Thus, all medications should be reviewed at regular intervals to monitor their efficacy. For more information on medications please visit www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx 

 

Managing Fibromyalgia

Learning to manage the condition seems, so far, to be the most successful way of dealing with fibromyalgia.A combination of heat, rest, exercise and reducing stress can enable some people with fibromyalgia to maintain a productive life.

Support from family, friends and other people who have fibromyalgia is extremely valuable to those who have fibromyalgia.

Various talking therapies and Cognitive Behavioural Therapy (CBT) have been found to be beneficial in many long term conditions as pyschological factors can have an impact on physical symptoms.

Relaxation is one technique that works really well for almost everybody with fibromyalgia. It reduces tension in the mind and body right away. The results are calming for all the symptoms, especially for the pain. Relaxation can be learned from books, tapes, videos or special courses. 

Heat is important. A hot water bottle and hot baths or showers will help reduce pain and banish morning stiffness. Soaking hands and feet in hot water for a few minutes can ease their aching. Exercise is the most common prescription for fibromyalgia and Dr Pellegrino’s section on this has invaluable advice about the form this should take.

Although no particular diet has been shown to help fibromyalgia, a healthy, balanced diet is important to provide protein, vitamins and minerals. It is best to avoid or at least cut down on coffee, tea and alcohol. Some sufferers have a tendency to gain weight and this can be distressing in itself. If you follow a healthy diet this should in turn help with your weight control.

People with fibromyalgia can have good days and bad days. On a good day it is important to pace yourself; overdoing it may simply make matters worse. Rest is also important. Listen to your body when it tells you to slow down.

 

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