Fibromyalgia (FM) is a chronic pain illness characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.

Who is affected?

It is estimated that approximately 5-7% of the U.S. population has FM. Although a higher percentage of women of all ages and races are affected, it does strike men and children. Because of its debilitating nature, fibromyalgia has a serious impact on patients' families, friends and employers, as well as society at large.

What are the symptoms?

FM is characterized by the presence of multiple tender points and a constellation of symptoms.

Pain:

The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.

Fatigue:

In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically.  

Sleep Problems:

Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.

Other Symptoms:

Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.  

How is it diagnosed?

Currently there are no laboratory tests available for diagnosing fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination. This exam is based on the standardized ACR criteria. Proper implementation of the exam determines the presence of multiple tender points at characteristic locations.  

It is estimated that it takes an average of five years for a FM patient to get an accurate diagnosis. Many doctors are still not adequately informed or educated about FM. Laboratory tests often prove negative and many FM symptoms overlap with those of other conditions, thus leading to extensive investigative costs and frustration for both the doctor and patient. Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus, does not rule out a FM diagnosis. Fibromyalgia is not a diagnosis of exclusion and must be diagnosed by its own characteristic features.

To receive a diagnosis of FM, the patient must meet the following diagnostic criteria:

• Widespread pain in all four quadrants of the body for a minimum duration of three months
• Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied (see figure above)

What causes FM?

While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.

Recent studies show that genetic factors may predispose individuals to a genetic susceptibility to FM. For some, the onset of FM is slow; however, in a large percentage of patients the onset is triggered by an illness or injury that causes trauma to the body. These events may act to incite an undetected physiological problem already present.

Exciting new research has also begun in the areas of brain imaging and neurosurgery. Ongoing research will test the hypothesis that FM is caused by an interpretative defect in the central nervous system that brings about abnormal pain perception. Medical researchers have just begun to untangle the truths about this life-altering disease.

How is FM treated?

One of the most important factors in improving the symptoms of FM is for the patient to recognize the need for lifestyle adaptation. Most people are resistant to change because it implies adjustment, discomfort and effort. However, in the case of FM, change can bring about recognizable improvement in function and quality of life. Becoming educated about FM gives the patient more potential for improvement.

An empathetic physician who is knowledgeable about the diagnosis and treatment of FM and who will listen to and work with the patient is an important component of treatment. It may be a family practitioner, an internist, or a specialist (rheumatologist or neurologist, for example). Conventional medical intervention may be only part of a potential treatment program. Alternative treatments, nutrition, relaxation techniques and exercise play an important role in FM treatment as well. Each patient should, with the input of a healthcare practitioner, establish a multifaceted and individualized approach that works for them.

Pain Management:

Over-the-counter pain medications, such as acetaminophen or ibuprofen, may be helpful in relieving pain. The physician may decide to prescribe one of the newer non-narcotic pain relievers (e.g. tramadol) or low doses of antidepressants (e.g. tricyclic antidepressants, serotonin reuptake inhibitors) or benzodiazepines. Patients must remember that antidepressants are "serotonin builders" and can be prescribed at low levels to help improve sleep and relieve pain. If the patient is experiencing depression, higher levels of these or other medications may need to be prescribed. Lidocaine injections into the patient's tender points also work well on localized areas of pain.  

An important aspect of pain management is a regular program of gentle exercise and stretching, which helps maintain muscle tone and reduces pain and stiffness.

Sleep Management:

Improved sleep can be obtained by implementing a healthy sleep regimen. This includes going to bed and getting up at the same time every day; making sure that the sleeping environment is conducive to sleep (i.e. quiet, free from distractions, a comfortable room temperature, a supportive bed); avoiding caffeine, sugar and alcohol before bed; doing some type of light exercise during the day; avoiding eating immediately before bedtime and practicing relaxation exercises as you fall to sleep. When necessary, there are new sleep medications that can be prescribed, some of which can be especially helpful if the patient's sleep is disturbed by restless legs or periodic limb movement disorder.

Psychological Support:

Learning to live with a chronic illness often challenges an individual emotionally. The FM patient needs to develop a program that provides emotional support and increases communication with family and friends. Many communities throughout the United States and abroad have organized fibromyalgia support groups. These groups often provide important information and have guest speakers who discuss subjects of particular interest to the FM patient. Counseling sessions with a trained professional may help improve communication and understanding about the illness and help to build healthier relationships within the patient's family.

Other Treatments:

Complementary therapies can be very beneficial. These include: physical therapy, therapeutic massage, myofascial release therapy, water therapy, light aerobics, acupressure, application of heat or cold, acupuncture, yoga, relaxation exercises, breathing techniques, aromatherapy, cognitive therapy, biofeedback, herbs, nutritional supplements, and osteopathic or chiropractic manipulation.

What is the prognosis?

Better than ever before! The efforts of individuals, support groups, organizations and medical professionals to help improve the quality of life for people with FM are starting to pay off. Better ways to diagnose and treat FM are on the horizon. The symptoms of FM can vary in severity and often wax and wane, but most patients do tend to improve over time. By actively seeking new information, talking to others who have FM, re-evaluating daily priorities, making lifestyle changes, and working hard to keep a hopeful attitude, the FM sufferer can become the FM survivor!

Fibromyalgia (fi-bro-my-AL-ja) syndrome (FMS) is a very common condition of widespread muscular pain and fatigue. Seven to ten million Americans suffer from FMS. It affects women much more than men in an approximate ratio of 20:1. It is seen in all age groups from young children through old age, although in most patients the problem begins during their 20s or 30s. Recent studies have shown that fibromyalgia syndrome occurs world wide and has no specific ethnic predisposition.

 The Symptoms of Fibromyalgia Syndrome  

Fibromyalgia syndrome patients have widespread body pain which often seems to arise in the muscles. Some FMS patients feel their pain originates in their joints. Pain that emanates from the joints is called arthritis; extensive studies have shown FMS patients do not have arthritis. Although many fibromyalgia syndrome patients are aware of pain when they are resting, it is most noticeable when they use their muscles, particularly with repetitive activities. Their discomfort can be so severe it may significantly limit their ability to lead a full life. 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.

In addition to widespread pain, other common symptoms include a decreased sense of energy, disturbances of sleep, and varying degrees of anxiety and depression related to patients' changed physical status. Furthermore, certain other medical conditions are commonly associated with fibromyalgia, such as: tension headaches, migraine, irritable bowel syndrome, irritable bladder syndrome, premenstrual tension syndrome, cold intolerance and restless leg syndrome. Patients with estalished rheumatoid arthritis, lupus (SLE) and Sjogren's often develop during the course of their disease. The combination of pain and multiple other symptoms often leads doctors to pursue an extensive course of investigations - which are nearly always normal.

 Diagnosing Fibromyalgia Syndrome

There are no blood tests or x-rays which show abnormalities diagnostic of FMS. This initially led many doctors to consider the problems suffered by FMS patients were all "in their heads" or that fibromyalgia syndrome patients had a form of masked depression or hypochondriasis. Extensive psychological tests have shown these impressions were unfounded. A physician's diagnosis of FMS is based on taking a careful history and the finding of tender areas in specific areas of muscle. These locations are called "tender points" or "trigger points". They are tender to palpation and often feel somewhat hardened if the muscle is stroked. Frequently, pressure over one of these areas will cause pain in a more peripheral distribution, hence the term trigger point.

The Long Term Outcome for Fibromyalgia Syndrome

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 in this brochure. 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 and avocational 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 humor and determination to push on.

 The Treatment of Fibromyalgia Syndrome

The treatment of FMS is frustrating for both patients and their physicians. In general, drugs used to treat musculoskeletal pain, such as aspirin, non-steroidals (e.g. ibuprofen) and cortisone are not particularly helpful in this situation. As in any chronic pain condition, education is an essential component that helps patients understand what can or can't be done as well as teaching them to help themselves.

It is important for a patient's physician to discover whether there is a cause for sleep disturbances. Such sleep problems include sleep apnea, restless leg syndrome and teeth grinding. If the cause for a patient's sleep disturbance cannot be determined, low doses of an anti-depressive group of drugs, called tricyclic anti-depressants or short acting sleeping medications such as zolpidem (Ambien), may be beneficial. Patients need to understand these medications are not addictive when used in low dosages (eg., Amitriptyline 10 mg at night) and have very few side effects. In general, routine use of sleeping pills such as Halcion, Restoril, Valium, etc. should be avoided as they impair the quality of deep sleep. Ambien (zolpidem), is claimed to avoid this problem.

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 exercycle and pool therapy utilizing an Aqua Jogger (a floatation 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.

Drugs such as aspirin and Advil are not particularly effective and seldom do more than take the edge off FMS pain.  Opioid analgesics ( propoxyphene, codeine, morphine,oxycodone, methadone) may provide a worthwhile  relief of pain in a subgroup of severely afflicted patients, but fibromyalgia patients seem especially sensitive to opioid side effects (nausea, constipation, itching and mental blurring) and often decide against the long term use of these drugs. The use of opioid analgesics (narcotics) in the management of non-malignant pain has been a controversial issue for many doctors - the usually cited reasons for concern being addiction, oversight by state medical boards and criminal diversion of drugs.  However recent research has shown that addiction seldom occurs when these medications are use in chronic pain states. It is important to understand the difference between addiction and dependence (which occurs with all these drugs in the majority of patients (see Addiction/Dependence). Two particularly useful weak opioids in the management of FM pain are tramadol (Ultram) and the combination of tramadol with acetaminophen (Ultracet). Neither of these 2 medications is a FDA scheduled drug (i.e. they have minimal addiction potential)

Particularly painful areas often may be helped for a short time (2-3 months) by trigger point injections. This involves injecting a trigger point with a local anesthetic (usually 1% Procaine) and then stretching the involved muscle with a technique called spray and stretch. It should be noted the injection of a tender point is quite painful (indeed, if it is not painful the injection is seldom successful). After the injection, there is typically a 2-4 day lag before any beneficial effects are noted. Other techniques which directly help the tender areas on a transient basis are heat, massage, gentle stretching and acupuncture.

About 20% of FMS patients have a co-existing depression or anxiety state which needs to be appropriately treated with therapeutic doses of anti-depressants or anti-anxiety drugs often in conjunction with the help of a clinical psychologist or psychiatrist. Basically, patients who have a concomitant psychiatric problem have a double burden to bear. They will find it easier to cope with their FMS, if the psychiatric condition is appropriately treated. It is important to understand fibromyalgia syndrome itself is not a psychogenic pain problem and that treatment of any underlying psychological problems does not cure the fibromyalgia.

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 stop watch 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 most FMS applicants are initially turned down by the Social Security Administration at the first review. However, each patient needs to be evaluated on an individual basis before any recommendations for or against disability are made.