What is Fibromyalgia (FM)?
FMS (fibromyalgia (fi-bro-my-Al-juh) syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.
Most patients with fibromyalgia 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 fibromyalgia, but it shows up in people of all ages.
Increased recognition of fibromyalgia (FM) in both primary care and rheumatology clinics has skyrocketed since the publication of the ACR’s (the American College of Rheumatology) FM classification criteria in 1990. Medline references for FM soared and so did National Institute of Health funding as evidenced by the number of projects involving FM. From 1975 to 1990, there were only 17 projects. From 1992 to the present, there have been 500 projects involving FM. Diagnostic criteria also set the stage for epidemiological studies, demonstrating that FM in the general population has a prevalence ranging from 1.3 to 7.3 percent.
FM carries an annual direct cost of care over $20 billion. People with FM account for a large proportion of rheumatology outpatient visits and FM is the second or third most common diagnosis made by British rheumatologists. In a cross-sectional mail survey of Canadian rheumatologists, FM was listed as one of the three most common diagnoses among their patients. In an Israeli internal medicine ward, 15 percent of the inpatients were found to have FM and FM in hospital patients could be more common than reported findings.
Musculoskeletal pain and fatigue experienced by fibromyalgia syndrome 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 fibromyalgia 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 fibromyalgia.
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 fibromyalgia syndrome 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.
Doctors who left medical school before 1990 may not be familiar with fibromyalgia. That is because the disease was only given its name then by the American College of Rheumatology. So a doctor aged under 40 years of age may understand your condition better than an older practitioner. 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 fibromyalgia. 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 fibromyalgia syndrome symptoms worse.
SYMPTOMS AND ASSOCIATED SYNDROMES
Pain - The pain of fibromyalgia 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 low back, and other areas around the joints. Many people will say, "I hurt all over."
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 fibromyalgia 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 fibromyalgia syndrome 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 fibromyalgia patients.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 50% of fibromyalgia 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 fibromyalgia 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.
The cause of fibromyalgia 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 fibromyalgia 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.
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.
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 fibromyalgia 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.
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, cognitive behaviour therapy and meditation.
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 fibromyalgia syndrome 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.
Purchase the Self Help Exercise Guide for Fibromyalgia
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.
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.
We publish the "Fibromyalgia magazine". Join today and begin the path towards taking charge of your Fibromyalgia In this publication, you will read about research findings, new treatment options, and tips on coping with fibromyalgia. Audio and videotapes, previous newsletter issues, and support group listings are also available.
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 fibromyalgia patients disabled and it is worth seeking specialist help. We are in the process of producing a nationwide network of sympathetic doctors. This information will be announced in Fibromyalgia Magazine.
Research into Fibromyalgia Syndrome
Over the past 10 years there has been increasing recognition and interest in fibromyalgia syndrome. We send out a free email newsletter every month that features all the relevant FM research. You can subscribe here to the newsletter.
What's the Difference between FM and Chronic Fatigue (M.E.)?
Some doctors treat fibromyalgia (FMS) and chronic fatigue syndrome (CFS) separately, while others think they are actually the same thing – or at least, variations of the same condition. According to the Arthritis Foundation, research shows that 50 to 70 percent of people with one diagnosis also fit the criteria for the other.
FMS and CFS are known to have a host of symptoms in common. They include:
- Sleep disorders
- Irritable bowel syndrome symptoms
- Chronic headaches
- Association with Temporomandibular Joint Syndrome (TMJ)
- Cognitive or memory impairment
- Impaired coordination
One key difference, when it comes to a diagnosis, is which symptom is worst – pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FMS or the CDC's guidelines for CFS.
However, experts have found some significant differences. CFS tends to begin after flu-like symptoms and may be linked to a virus. CFS patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FMS patients. Also, CFS diagnostic criteria include low-grade fever and sore throat, while FMS criteria do not. Meanwhile, the onset of FMS frequently is traced to a physical or emotional trauma. The pain of FMS gets better with heat and massage, while the pain of CFS does not. Further, people with FMS have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS.
Why it Matters
In the end, does it really matter? Some used to say it didn't. Now, however, the drug Lyrica (pregabalin) is approved for fibromyalgia. The FDA also is considering New Drug Appliations for Cymbalta (duloxetine) and milnacipran as FMS treatments, as well as Ampligen (poly I: poly C12U) for CFS. Lyrica, Cymbalta and milnacipran all boost certain neurotransmitters, which may be normal or even already elevated in people with CFS. Ampligen modifies the immune system. It could be dangerous to take these drugs if you don't have the problems they're intended to correct.
The best course of action is to talk to your doctor about both conditions and make sure you've done all you can to solidify your diagnosis.
New diagnostic criteria set in 2010 for fibromyalgia
In 2010 the ACR proposed new diagnostic criteria for fibromyalgia. The old criteria did not take into account other important symptoms such as fatigue, sleep disturbance and cognitive dysfunction. It also did not accommodate for fluctuations in disease or effectiveness of new treatments. Symptom severity was also not measured. Another shortcoming of the old criteria is that men with fibromyalgia do not have as much tenderness as women. The new criteria include:
Widespread pain index - Determined by counting the number of areas the patients has felt pain in the last week. The checklist includes 19 specified areas.
Symptom Severity Scale - Determined by a rating of 0-3, 3 being the most pervasive, of the severity of three common symptoms: fatigue, waking unrefreshed and cognitive symptoms. An additional 0-3 points can be given to account for the severity of other common symptoms such as nausea, irritable bowel, numbness, dizziness or depression. This gives a final score of 0-12 points.
Fibromyalgia diagnosis would require:
- 7 areas of pain and a severity score of 5 points,
- or pain in 3-6 areas and a score of 9 or more.
The symptoms must still remain for at least 3 months and not be part of another disorder.
Is fibromyalgia included in the International Classification of Diseases?
Fibromyalgia is included in the Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) published by WHO in 1992 as follows:
M79 Other soft tissue disorders, not elsewhere classified
M79.0 Rheumatism, unspecified
My Doctor tells me it is "all in my head"
We hear from a lot of people saying that their Doctor doesn't believe in their condition and say that it's in in their mind or head It's true that some doctors still believe that fibromyalgia is a form of depression or may mistake its symptoms for those of depression. Granted, the symptom profiles are similar, but studies have confirmed that the fibromyalgia diagnostic criteria can differentiate between the two conditions. Additionally, while some people do have both fibromyalgia and depression, not everyone with fibromyalgia fits the diagnostic criteria for depression.
The many symptoms of this illness and the way they can come and go make it difficult for people to accept that they are real. People expect someone who's sick to do one of two things:
1. Be sick for a while and then get better, or
2. Be consistently sick all the time.
When they see you functional one day and incapacitated the next, it's hard for them to understand -- and therefore believe -- that you're legitimately ill.However, fibromyalgia is not the only condition that relapses and remits. No one questions whether multiple sclerosis (MS) is real, and yet people with MS can have extreme symptoms that come and go, often without a warning or an obvious cause.
The idea that fibromyalgia is "all in your head" is outdated. While we don't yet fully understand this condition, it's clear that multiple physiological factors are involved in creating the symptoms. It's confusing and hard to understand, but it's not something you're imagining or inflicting upon yourself, and it's not due to psychological problems.