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ABOUT FIBROMYALGIA...... AND OURSELVES
What is Fibromyalgia Syndrome- FMS?
Fibromyalgia is a chronic condition of widespread pain and profound fatigue. 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 the 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'.
How Common is FMS?
Fibromyalgia Syndrome (FMS for short) is a common illness. In fact, it is as common as Rheumatoid Arthritis and can even be more painful. People with mild to moderate cases of FMS are usually able to live a normal life, given the appropriate treatment. If symptoms are severe, however, people may not be able to hold 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; -Algia- meaning pain.
A Collection of Symptoms
Fibromyalgia is known as a syndrome because it is a collection of symptoms rather than a specific disease process that is well understood. Besides pain and fatigue, FMS symptoms often include:-
· Unrefreshing sleep - waking up tired and stiff
· Headaches - ranging from -ordinary- types of headache to migraine
· Irritable Bowel - frequent diarrhoea or constipation, sometimes accompanied by gas in the abdomen, or nausea.
Diagnosis
FMS is not new, but for most of this century it was difficult to diagnose. Part of the problem has been that the condition could not be identified in 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 FMS in the 1970s, and in 1990 an international committee publishes requirements for diagnosis that are now widely accepted. Once other medical conditions have been ruled out through tests and the patients- history has been reviewed, diagnosis depends on two main symptoms:
· Widespread pain for more than three months,
together with
· Pain in at least 11 of 18 specified tenderpoint sites when they are pressed.
-Widespread pain-, means pain above and below the waist, and on both sides of the body. The -tenderpoints- or spots of extreme tenderness are rarely noticed by the patient until they are pressed.
What Causes FMS?
The Fibromyalgia Syndrome often develops after some sort of trauma that seems to act as a trigger, such as a fall or a car accident, viral infection, childbirth, or an operation. Sometimes the condition begins without any obvious trigger. The actual cause of FMS has not yet been found. Over the past several year, however, research has produced some insights into this puzzling condition. For instance, it has been known that most people with FMS are deprived of deep restorative sleep. Current studies may find out how to improve the quality of sleep.
Latest research has identified a deficiency in Seratonin in the Central Nervous System and a resulting imbalance in Substance P. The effect is Disordered Sensory Processing (the brain registers pain when others might experience a slight ache or stiffness). With these advances comes the added hope that a cause may be found and hence a cure or more effective treatment.
Current Treatment
At the present time treatment for Fibromyalgia aims at reducing pain and improving sleep. In other words, the symptoms are being treated rather than the condition itself.
Medications most often prescribed for FMS are tricyclic drugs used to treat depression, although doses used for FMS are much lower than those for depression. In some cases, these drugs will help with both sleep and pain. Over ? the- counter medications may help to relieve the pain of FMS 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 general practitioner. It is most important to note that medications work for some people but not for others.
Support from family, friends and other people who have FMS is extremely valuable to those who have Fibromyalgia. Professional counselling may help some people to cope with this illness and to take an active part in their own treatment.
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 a person with FMS to maintain a productive life.
Managing Fibromyalgia
The best way to cope with Fibromyalgia is to use a number of techniques that ease the symptoms as much as possible.
Relaxation is one technique that works really well for almost everybody with FMS. 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. Using a heated hot water bottle, and hot baths or showers will help reduce pain and help relieve 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. Two kinds of exercise are felt to be of benefit, these are stretching and aerobic. Both should be done gently at first, for a few minutes at a time. As the pain permits, exercise time can gradually be increased.
· Good stretching exercises can be recommended by a Physiotherapist, Osteopath, book, or video, whilst others have found Yoga to be helpful.
· Aerobic exercises should be the low impact type: walking and moving around in warm water are excellent, swimming is good for some people, but must be done in a heated pool. Cold water is likely to make symptoms worse.
Recent research shows that people with FMS have to find their own exercise limits. Their fitness goals cannot be set by someone else.
Although no particular diet has been shown to help FMS, a healthy 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, this can be distressing in itself. If you follow a healthy diet this should, in turn, help with your weight control. Sufferers of FMS 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 vitally important. Listen to your body when it tells you to slow down.
Additional Information is available from Fibromyalgia Support Group (Medway)
This group has the following additional information available that may be of benefit.
· Leaflets
· Posters
· A Library of books, cassettes, CDs, and videos
· A Carers Helpline
HISTORY OF THE MEDWAY SUPPORT GROUP
The group was established by Margaret Robson in September 2002. The need for the group was identified whilst Margaret was talking to Fibromyalgia patients at the Medway Maritime Hospital. Margaret was a member, at that time, of the East Kent Support Group that met in Canterbury. The distance from Medway to Canterbury, and the lack of adequate public transport, meant that many people from the Medway area were unable to attend.
During the time that Margaret was talking on a regular basis to other patients, at the Medway Maritime Hospital with Fibromyalgia, she became aware of the almost total lack of information in the public sphere regarding the condition.
With the support of her husband, Margaret decided to start a Fibromyalgia support group in the Medway Towns. Originally, it was thought that Medway would be the only focus, however, because there is an overlap regarding medical facilities with Sittingbourne and Sheppey, it was decided that the group should include those areas.
Later, when the group grew larger, it was realised that this was the only group between Medway and North London. As a consequence of this, the group accommodates people from a far larger area than was originally envisaged. These people remain on the books until a group starts in their area.
In April 2002 the first meeting took place at a local public house. There was over 20 people there and the main problem was that people could not get round to talk to others. As the list of people began to grow, Margaret and Ron (her husband) decided that a proper group was needed. Margaret felt she could just about cope with that as she only expected to have a membership of around 50 at the most.
She hired a room for a September meeting, in 2002, but a few weeks before the meeting, then realised that the numbers of people interested in coming would not fit into the room. So she had to make a decision. She couldn't get a big enough hall for free so Margaret and Ron decided to pay for the hall themselves. They had already been paying the costs incurred this far. The September meeting was so successful that everyone wanted more. Margaret couldn't cope with a meeting every month so opted for one every other month with a newsletter in between. From the September 2002 until December, Ron and Margaret paid all the running costs themselves. As they are both Christians they looked upon this as part of their giving.
From there it just seemed to fund itself. There were generous personal donations, raffles at meetings, sales of donated books, a sponsored walk and swim, as well as generous donations from local shops and organisations.
Much of the information on this page comes from material provided by the Fibromyalgia Association UK with whom we work closely.
The inclusion of articles and features on this website does not necessarily infer endorsement by the group/Association. Any advice or recommendation of a medical nature, given on this website, should always be discussed with a medical professional. The group/Association cannot be held responsible for omission and /or errors.