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Living with Fibromyalgia

Nearly 4 million Americans-most of them women-suffer from this mysterious ailment.

By Paula Dranov

"Day-to-day living: My doctor recommended changes in my diet-more fiber, fruits and vegetables and less sugar, fat and processed foods-and suggested that I keep a daily journal to track my symptoms. She also told me that I had to exercise. I thought, exercise? I could hardly get out of bed! But I signed up for water exercises at the local Y and agreed to walk for at least 10 minutes a day."

 

 

Health & Fitness

Fibromyalgia

Below is a description of fibromyalgia syndrome (FMS), but because of its substantial symptom overlap with chronic fatigue syndrome (CFS), it can be viewed as applying to chronic fatigue syndrome patients as well.
WHAT IS FIBROMYALGIA SYNDROME?

FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments and tendons--the fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research later proved that inflammation did not exist.

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.

To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state and this is why several experts in the field of FMS and CFS believe that these two syndromes are one and the same.

SYMPTOMS AND ASSOCIATED SYNDROMES

Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, burning, throbbing, shooting and stabbing. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.

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.

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. Patients appeared to spend the night with one foot in sleep and the other one out of it. In most cases, a physician doesn't have to order expensive sleep lab tests to determine if you have disturbed sleep. If you wake up feeling as though you have just been run over by a Mack truck--what doctors refer to as unrefreshed sleep--it is reasonable for your physician to assume that you have a sleep disorder. It should be noted that most patients diagnosed with chronic fatigue syndrome have the same alpha-EEG sleep pattern and some fibromyalgia-diagnosed patients have been found to have other sleep disorders, such as sleep myoclonus or PLMS (nighttime jerking of the arms and legs), restless leg syndrome and bruxism (teeth grinding). The sleep pattern for clinically depressed patients is distinctly different from that found in FMS or CFS.

Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas and nausea represent 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.

Temporomandibular 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 odors, 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 drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.

POSSIBLE CAUSES

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 norepinephrine, 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 norepinephrine and epinephrine, 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 favorable impact on these transmitters as well.

COMMON TREATMENTS

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 norepinephrine--neurotransmitters that modulate sleep, pain and immune system function--are commonly prescribed. Examples of drugs in this category would include Elavil, Flexeril, Sinequan, Paxil, Serzone, Xanax and Klonopin. A low dose of one of these medications may be of help. In addition, nonsteroidal, anti-inflammatory drugs (NSAIDs) like ibuprofen may also be beneficial. Most patients will probably need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, acupuncture, acupressure, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.

WHAT IS THE PROGNOSIS?

Long term follow-up studies on fibromyalgia syndrome have shown that it is chronic, but the symptoms may wax and wane. The impact that FMS can have on daily-living activities, including the ability to work a full-time job, differs among patients. Overall, studies have shown that fibromyalgia can be equally as disabling as rheumatoid arthritis. On the other hand, follow-up of people meeting the chronic fatigue sydnrome criteria indicates that as many as 40% may significantly improve but few are thought to completely recover from this syndrome. Longer term follow-up studies are not available to indicate whether these "improved" CFS patients later relapse with an increase in symptoms. A preliminary follow-up study by the CDC (Centers for Disease Control) reveals that for those individuals with chronic fatigue syndrome who do not recover or significantly improve after five years duration, their most prominent symptom changes from fatigue to muscle pain with concentration problems (sounds a lot like the permanent syndrome of fibromyalgia but the CDC is not checking patients for tender points).

According to a research study by Dedra Buchwald, M.D., people who meet the criteria for both FMS and CFS tend to be at the more severe end of the spectrum of symptoms and are more likely to become work-disabled. Buchwald says her findings underscore the importance of recognizing concurrent fibromyalgia and chronic fatigue syndrome (Rheumatic Disease Clinics of North America 22(2):219-243, 1996).

Source: 


 

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