ME~FMS

Fibromyalgia Syndrome

What Is Fibromyalgia Syndrome?

FMS {fibromyalgia syndrome} is a potentially chronic and disabling neurological disorder, which causes widespread musculoskeletal pain, fatigue disorder and cognitive problems such as memory loss and concentration for which the cause is still unknown. Other symptoms include sensitivity to light, noise and smell, disturbed sleep patterns and persistent headaches. Fibromyalgia means pain in the fibrous tissues in the body.

The pain comes from the connective tissues, such as the muscles, tendons, and ligaments. FMS does not involve the joints, as does rheumatoid arthritis and osteoarthritis. Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, but it shows up in people of all ages.

Musculoskeletal pain and fatigue experienced by FMS patients is a chronic problem, which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition According to recent research; most patients can expect to have this problem lifelong. However, worthwhile improvement may be obtained with appropriate treatment, as will be discussed later. There is often concern on the part of patients, and sometimes physicians, that FMS is the early phase of some more severe disease, such as multiple sclerosis, systemic lupus erythematosus, etc. Long-term follow up of FMS patients has shown that it is very unusual for them to develop another rheumatic disease or neurological condition. However, it is quite common for patients with "well established" rheumatic diseases, such as rheumatoid arthritis, systemic lupus and Sjogren's syndrome to also have FMS.

It is important for their doctor to realize they have such a combination of problems, as specific therapy for rheumatoid arthritis and lupus, etc. does not have any effect on FMS symptoms. Patients with FMS do not become crippled with the condition, nor is there any evidence it effects the duration of their expected life span. Nevertheless, due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational activities which leads to a reduced quality of life. As with many chronic diseases, the extent to which patients succumb to the various effects of pain and fatigue are dependent upon numerous factors, in particular their psycho-social support, financial status, childhood experiences, sense of humour and determination to push on.

Physicians who aren't familiar with FMS may do extensive testing to determine what is wrong. This creates frustration and seldom yields a diagnosis because, at this time, there are no routine blood tests or X-rays that show abnormalities in FMS.

However, FMS can be diagnosed with some certainty by informed physicians who will look for a history of chronic symptoms of at least three months' duration along with reports of pain in all four quadrants of the body.

Physicians will also perform a simple physical exam of the 18 specific points. The American Rheumatology Society has been instrumental in defining the diagnostic criteria for FMS. They deem it to be present when at least 11 of the 18 points are tender or painful to pressure. While physicians specializing in Rheumatology or Physical Medicine have often diagnosed and treated FMS, many GPs are also knowledgeable about this syndrome. The best physician for you will be one who works with you to find the most helpful treatments.

Patients can find themselves unable to work in their chosen professions and may have difficulty performing everyday tasks. As a consequence of muscle pain, many FMS patients severely limit their activities including exercise routines. This results in their becoming physically unfit - which eventually makes their FMS symptoms worse.

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Symptoms And Associated Syndromes

Pain - The pain of FMS has no boundaries. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively. People with FMS suffer chronic widespread pain, which can be described as burning, throbbing, shooting, or stabbing. Painful areas often include the upper back, shoulders, neck, the lower back, and other areas around the joints.

Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating. Most people with FMS complain of fatigue. It can be profound, interfering with all daily activities.

Sleep disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that FMS patients could fall asleep without much trouble, but their deep level {or stage 4} sleep was constantly interrupted by bursts of awake-like brain activity.}. The sleep pattern for clinically depressed patients is distinctly different from that found in FMS or CFS.

Irritable Bowel Syndrome - Constipation, diarrhoea, frequent abdominal pain, abdominal gas and nausea represents symptoms frequently found in roughly 40% to 70% of FMS patients.

Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 50% of FMS patients and can pose as a major problem in coping for this patient group.

Temporo-mandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJD, causes tremendous face and head pain in one quarter of FMS patients. However, a 1997 report indicates that as many as 90% of FMS patients may have jaw and facial tenderness that could produce, at least intermittently, symptoms of TMJD. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the joint and not necessarily the joint itself.

Multiple Chemical Sensitivity Syndrome - Sensitivities to odours, noise, bright lights, medications and various foods is common in roughly 50% of FMS or CFS patients.

Other common symptoms - Painful menstrual periods {dysmenorrhea}, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.

Aggravating factors - Changes in weather, cold or draughty environments, hormonal fluctuations {premenstrual and menopausal states}, stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.

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Possible Causes

The cause of FMS and chronic fatigue syndrome remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection {viral or bacterial}, an automobile accident or the development of another disorder, such as Rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that's already present in the form of genetic predisposition.

What could this abnormality be? Theories pertaining to alterations in neurotransmitter regulation {particularly serotonin and noradrenalin, and substance P}, immune system function, sleep physiology, and hormonal control are under investigation. Substance P is a pain neurotransmitter that has been found by repeat studies to be elevated threefold in the spinal fluid of FMS patients. Two hormones that have been shown to be abnormal are cortisol and growth hormone.

In addition, modern brain imaging techniques are being used to explore various aspects of brain function--while the structure may be intact, there is likely a dysregulation in the way the brain operates. The body's response to exercise, stress and simple alterations in position {vertical versus horizontal} are also being evaluated to determine if the autonomic nervous system is not working properly. Your body uses many neurotransmitters, such as noradrenalin and adrenalin, to regulate your heart, lungs and other vital organs that you don't have to consciously think about. Ironically, many of the drugs prescribed for FMS/CFS may have a favourable impact on these transmitters as well.

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Common Treatments

Pharmaceutical
Traditional treatments are geared toward improving the quality of sleep, as well as reducing pain. Because deep level {stage 4} sleep is so crucial for many body functions, such as tissue repair, antibody production, and perhaps even the regulation of various neurotransmitters, hormones and immune system chemicals, the sleep disorders that frequently occur in FMS and chronic fatigue patients are thought to be a major contributing factor to the symptoms of this condition. Medicines that boost your body's level of serotonin and noradrenalin--neurotransmitters that modulate sleep, pain and immune system function--are commonly prescribed. Examples of drugs in this category would include Lentizol or Tryptizol {amitriptyline}, Sinequan {doxepin}, Seroxat {paroxetine} and Dutonin {nefazodone}. A low dose of one of these medications may be of help, they can improve the quality of sleep and may reduce pain perception. Routine use of most sleeping pills should be avoided, as they are habit forming. Newer sleeping medications such as Stilnoct {Ambien} might prove useful in some cases.

Nonsteroidal, anti-inflammatory drugs {NSAIDs} like ibuprofen are not particularly helpful. See Phamaceutical

Rehabilitation Treatments
Graded rehabilitation programmes must be individualised for the patient's symptoms, level of disability and personal circumstances. They should also encompass more than physical exercise; as emotional and mental activities also need to be paced.

Adjustment to the illness, and a behavioural response limiting its impact, while maximising the extent and rate of recovery, is crucial. As with other illnesses, cognitive behavioural therapy, tailored to the patient's needs, can substantially reduce secondary distress and optimise rehabilitation. Sadly, many perceive cognitive behavioural therapy as treatment for psychiatric disease, rather than a means to assist adjustment and recovery.

Patients with less severe illness can generally be managed by GPs and physicians, but those with more severe and protracted illness or with adjustment difficulties may benefit from more structured input from a team including, for example, physiotherapists, occupational therapists, clinical psychologists, dieticians and social workers.

Alternative Treatments
Many ME patients turn to complementary practitioners for help with an illness for which allopathic medicine has few answers, and surveys indicate high levels of appreciation.

It is important to consult practitioners who are properly qualified. Patients need to understand that no one therapy is likely to provide a magic cure. Many expend large amounts of money or energy looking for an instant cure only to be disappointed.

Acupuncture may help pain and insomnia. Massage with essential oils {e.g. lavender} seems to reduce pain and muscle spasms. Homeopathy and osteopathy have been found helpful by many patients. Relaxation and meditation techniques can be beneficial for those well enough to learn them. Their practice encourages mental as well as physical rest.

Acupuncture, acupressure, nutrition, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program. Therapeutic massage, heat or hot baths, ice massage, biofeedback and other relaxation techniques, stress reduction, behaviour modifications, body mechanics, posture training, cognitative behaviour threapy and meditation.

Exercise
A program of stretching and gentle exercise is essential for FMS patients. A physical therapist or exercise physiologist can help you put together a program that will be beneficial in maintaining muscle tone and a reasonable level of aerobic fitness. Walking, stationary exercise equipment, pool therapy, and stretching seem to be the most suitable activities for the FMS patient. The key is to start slowly and increase your exercise time and level carefully.

There is increasing evidence that a regular exercise routine is essential for all FMS patients. This is easier said than done because increased pain and fatigue caused by repetitive exertion makes regular exercise quite difficult. However, those patients who do get into an exercise regimen experience worthwhile improvement and are reluctant to give up. In general, FMS patients must avoid impact-loading exertion such as jogging, basketball, aerobics, etc. Regular walking, the use of a stationary exercise cycle and pool therapy utilizing an Aqua Jogger {a flotation device which allows the user to walk or run in the swimming pool while remaining upright} seem to be the most suitable activities for FMS patients to pursue. Supervision by a physical therapist or exercise physiologist is of benefit wherever possible. In general, 20 minutes of physical activity, 3 times a week at 70% of maximum heart rate {220 minus your age} is sufficient to maintain a reasonable level of aerobic fitness.

Diet
Some research has suggested that eating foods with low sugar content can help FM sufferers. The easiest way to do this is to consult a Glycemic index.

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Taking Charge Of Your FMS

The treatment of FMS can be frustrating for both patients and their physicians. It is important for people with FMS to become active participants in their own health care, not just recipients. By learning self-management techniques, they will be able to handle their symptoms more effectively. Education is essential for this process. Local support groups and educational seminars can be very beneficial in gaining greater understanding. Use the Symptom Diary to monitor your condition.

Most FMS patients quickly learn there are certain things they do on a daily basis that seem to make their pain problem worse. These actions usually involve the repetitive use of muscles or prolonged tensing of a muscle, such as the muscles of the upper back while looking at a Computer screen. Careful detective work is required by the patient to note these associations and where possible to modify or eliminate them. Pacing of activities is important; we have recommended patients use a stopwatch that beeps every 20 minutes. Whatever they are doing at that time should be stopped and a minute should be taken to do something else.

For instance, if they are sitting down, they should get up and walk around or vice versa. Patients who are involved in fairly vigorous manual occupations often need to have their work environment modified and may need to be retrained in a completely different job. Certain people are so severely affected, that consideration must be given to some form of monetary disability assistance. This decision requires careful consideration, as disability usually causes adverse financial consequences as well as a loss of self esteem. In general, doctors are reluctant to declare FMS patients disabled and it is worth seeking specialist help.

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ME

Symptoms

FMS

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