What is Fibromyalgia?

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1 What is Fibromyalgia? The word fibromyalgia means pain ( algia ) in the muscles ( my ) and fibrous tissues ( fibro ) such as tendons and ligaments. Fibromyalgia is a condition involving persistent pains throughout many areas of the body along with persistent tiredness. These symptoms tend to fluctuate, being worse at some times than others. Pains typically occur in the muscles, tendons and ligaments. These pains can vary from aching and burning to extreme tenderness. Pains may ease in one area only to appear in another. Generally, over time, symptoms may become more widespread. Tiredness (fatigue) also occurs. This can sometimes feel like a flu-like tiredness or may come on suddenly as if someone just pulled the plug on your energy. Various other symptoms have been reported by people with fibromyalgia. There are also a number of other conditions that often occur at the same time as fibromyalgia. As a consequence, quite a number of different symptoms may occur in people with fibromyalgia. The following are perhaps the most common, but it is not an exhaustive list of every possible symptom that may occur: Non-refreshing sleep waking up tired. Headaches. Irritable bowel alternating diarrhoea and constipation, sometimes with pain, bloating or feeling sick. Irritable bladder- needing to go to the toilet more often than usual. Lack of concentration, temporary memory difficulties and mixing up words. Clumsiness and dizziness. Sensitivity to noise, bright lights, crowded situations and changes in the weather. Painful menstrual periods occur in some women with fibromyalgia. Numbness and tingling. Feeling as if your hands or feet are swollen (although they are not actually swollen). Depression or anxiety occur in some people. It is not clear whether these are part of 'fibromyalgia syndrome', or develop as a result of having this condition. A number of people with FMS also have other sleep problems such as sleep apnoea (difficulty breathing with snoring and starting awake) and restless legs syndrome. When a condition involves a collection of symptoms it is known as a syndrome. Therefore Fibromyalgia is sometimes called Fibromyalgia Syndrome or FMS.

2 How Is It Diagnosed? The condition of Fibromyalgia has been known of for many years. However, it can often take some time for people to be diagnosed. Part of the problem is that there is no single test for Fibromyalgia. Also, because the symptoms of Fibromyalgia overlap with symptoms found in other conditions, people need to go through lots of medical investigations to rule these out before a diagnosis of Fibromyalgia is made. Tests that are often done include blood tests to exclude other serious illness. These may include: CRP and plasma viscosity to help rule out conditions like rheumatoid arthritis and other inflammatory conditions. Thyroid function tests - to rule out having low levels of thyroid hormone. Liver Function Tests, Vitamin B12 Until recently, Fibromyalgia was diagnosed according to the number of tender points or spots of extreme tenderness in the body. You may find that this is mentioned in lots of the older information about Fibromyalgia that is around. From May 2010 the way of diagnosing people has changed. Diagnosis is now made according to the number of areas in the body affected and the severity of the symptoms (Widespread Pain Index and Symptom Severity Score). Who Gets Fibromyalgia? About 1 in 50 people develop fibromyalgia at some stage. It is seven times more common in women than men. In most cases it first develops between the ages of 25 and 55. It is less common in younger adults and children.

3 Why Do I Have Fibromyalgia? At the moment it is very difficult to know exactly why someone gets Fibromyalgia. The exact cause of fibromyalgia is not known and there are likely to be a combination of reasons why it develops in someone. The following box summarises the main areas of understanding: Changes in the processing of pain messages : Although the pain is often felt in the muscles, and other soft tissues, there is little evidence that FMS is actually due to any problem in the tissues themselves. One of the main theories regarding FMS is that people with this condition have developed changes in the way that their central nervous system makes sense of nerve messages. This is called 'central sensitisation'. Research has shown that people with FMS have subtle changes in some chemicals in the brain and nervous system. What triggers or causes these changes is not known. Genetics: Some research suggests that some people s genetic make-ups make them more vulnerable to the condition developing. A stressful trigger sets the condition off: We know that most patients with FMS develop this condition after a stressful event. This stress could be a physical one such as an injury or infection. Or, the stress could be a psychological one such as a relationship breakdown or being in an abusive relationship. Decreased sleep quality: People with FMS seem to have less deep sleep than is normal. Deep sleep is important for the body to replenish itself and this may explain why people with FMS often say that they recover slowly from illnesses. The idea that deep sleep is important for FMS is backed up by studies showing that anyone deprived of sleep will start to show some symptoms of FMS over time. However, the exact significance of this lack of deep sleep is not known as it does not only occur in FMS. Altered levels of chemicals in the brain: Two chemicals in particular are shown to be lower in the brains of people with FMS Nor-adrenaline and Dopamine. Using drugs known to increase the levels of these chemicals may be helpful for some people. (this includes tri-cyclic antidepressants and the serotonin and nor-adrenaline reuptake inhibitors (see drugs in FMS). Changes in cortisol levels: Cortisol is a hormone that is released when the body is under stress (both physical and emotional stress). Some researchers have found that levels of cortisol are raised in people with FMS and some have found that levels are lowered. So, the exact significance of cortisol is not yet clear. Changes in immune system chemicals: Research has shown a number of changes in the levels of these. In particular, a chemical called IL-4 has been found to be very low in people with FMS. This chemical is needed for the body to respond to pain killers such as morphine and other opiates. This might explain why opiate medications are not that helpful in relieving pain in FMS.

4 How Can Fibromyalgia Affect People? Everyone s own experience of pain is very personal to them. This can vary from one person to the next. It can also change from day to day. It can be frustrating trying to get others to understand this. Although pain and fatigue can very much affect some people s lives, many people with fibromyalgia can still find ways of leading a fulfilling life. In a few cases symptoms do ease or go away after a few months. However for many cases it is a chronic (persistent) condition. It is not life threatening. Fibromyalgia is not an arthritis (which mainly affects joints). It is not due to cancer. Despite the pain there is no ongoing damage to joints or tissues. It is NOT a condition where you will automatically get worse over time. Receiving appropriate treatment and finding useful ways of managing and coping with the symptoms can help people maintain more normal and active lifestyles. What Is The Treatment For Fibromyalgia? Unfortunately there is no single or simple medical cure for fibromyalgia. Medical treatments aim to reduce symptoms as much as possible. Over the years a range of different treatments have been put forward with variable success. Each person is different, not all treatments help in all cases, and not all treatments may be locally available. Your doctor is likely to discuss the pros and cons of the various options, and help you to decide the best options for you to try. For many people the most helpful approach seems to be a combination of drug treatments and non-drug treatments. Drug Treatments: Medications work better for some people than for others. However, for many people the help from medications is limited. More information about this is available on the factsheet Drugs used to Treat Fibromyalgia.

5 Non-Drug Treatments: Learning to manage the condition seems, so far, to be the most successful way of dealing with fibromyalgia. There are a number of different ways of doing this which often work best when used together: Exercise & Movement improves symptoms in a good number of cases. Gentle low level exercise such as yoga, Tai Chi, Pilates and stretches can be useful ways to get started. Ideally, exercises aimed at increasing your heart rate (aerobic) such as walking, cycling and swimming are thought to be the best form of exercise to improve your health and fitness. It is important to start slowly and to gradually build up what you are doing over time. Psychological approaches can help people to manage their physical health problems. Taking a psychological approach to coping with your symptoms does not mean that the condition is not real or is all in the mind. It simply means that learning to deal with the way your symptoms can make you feel and improve your quality of life. Cognitive behavioural therapy (CBT) is one type of 'talking therapy' which may be of benefit. This looks at how you cope now rather than going into your past. Other approaches may include relaxation & mindfulness meditation. Complementary Medicine: Some people try complementary or alternative treatments such as acupuncture, osteopathy (especially cranial osteopathy), aromatherapy, massage, etc. There is little scientific evidence that such treatments help in the long term. However, some people find that certain treatments help them to relax, feel less stressed, and feel better in themselves which can help them to cope better with their condition. Other handouts on the Reconnect2Life website can tell you more about ways of getting started with some of these approaches to managing your symptoms. Further Information and Support: Fibromyalgia Association UK PO Box 206, Stourbridge, West Midlands, DY9 8YL Tel: Web: