A Statement for the Advisory Board of the The American Association for Chronic Fatigue Syndrome (AACFS) Chronic Fatigue Syndrome (CFS) is a therapeutic challenge to health care professionals. Currently, there is no medical cure for CFS. Symptomatic relief and life-style changes aimed at improving an affected person's physical and cognitive function are the primary goals of therapy. There have been few controlled clinical trials for the treatment of CFS, consequently there is very little data to guide therapy or predict efficacy in an individual patient. To complicate matters, many CFS patients experience increased sensitivity to the adverse effects of medications. Each patient must have an ongoing medical evaluation focusing on identifying any other medical problems that might masquerade as CFS, since these conditions may have specific and effective therapeutic approaches. Behavioral therapy, counseling and a supportive health care provider are the foundations for all other management. Careful "activity budgeting" and a strict daily schedule will prevent the tendency to overdo and suffer increased symptoms. The patient with CFS must not to resort to complete bedrest to recover from periods of increased symptoms. This strategy will result in progressive muscle deconditioning and increased fatigue. Patients who are moderately affected will benefit from counseling and occupational therapy. Severe clinical depression should be treated aggressively with particular attention to the possibility of suicide. Counseling and support should also be offered to the CFS patient's family and spouse. Symptom management should focus on chronic pain syndromes, sleep disorders, and the patient's mood. There are no controlled studies of any medications used for symptom management in CFS patients. Research trials using low doses of the tricyclic antidepressants (doxepin, amitriptyline, imipramine, and desipramine) have shown benefit for the relief of muscle pain and improvement of sleep quality in persons with fibromyalgia and may produce similar response in some patients with CFS. Klonopin is an effective sleep agent that is generally well tolerated but may be habit forming. Fluoxetine and other serotonin re-uptake antagonists may increase energy and improve mood and cognitive function at the risk of increased anxiety. Muscle spasms and myalgia may respond to quinine, carisoprodol, or cyclobenzaprine, Severe headaches may require the temporary and carefully monitored use of analgesic medications and there are anecdotal reports of benefit with acetazolamide. Many patients feel that certain foods increase their symptoms (particularly alcohol, caffeine, sugar, food additives), however there are no studies supporting the use of any specific diet or dietary supplement for CFS therapy. Specifically, the use of expensive herbal or diet therapy should be avoided until controlled studies prove their benefit. Symptom management should be tailored to the individual patient and issues of safety, benefit and expense must be carefully considered on a case-by-case basis. The cause or causes of CFS are not known. Therefore, it is not surprising that controlled clinical trials focused at altering one or more proposed pathogenic mechanisms have failed to produce significant and predictable clinical improvement. Two placebo-controlled trials of intravenous immunoglobulin came to different conclusions. One study showed no benefit and the second trial using a higher dose showed modest improvement in some patients who were treated with immunoglobulin. Essential fatty acids (primrose oil, fish oil) are interesting because of their antinflammatory effect but the beneficial results in patients with CFS reported in one small study were not observed in a second study. Cobalamin (vitamin B12) used alone or combined with folate is safe and relatively inexpensive. However, cobalamin did not demonstrate significant benefit in one small uncontrolled study in persons with CFS. Intramuscular magnesium improved symptoms of fatigue in a small trial but this benefit could not been reproduced in other studies. Ampligen, an intravenous immune modulator, demonstrated modest improvement in symptoms and daily functional capacity along with a reduction in the use of concomitant medication in a placebo-controlled trial of severely ill CFS patients. This drug has not yet been approved by the FDA and is undergoing further testing. Intravenous acyclovir demonstrated no benefit in CFS patients with elevated EBV antibody tests. Nystatin, ketoconazole and other anti-fungal agents for candidiasis have not been tested in controlled studies in CFS patients and have not proven effective in persons with the "systemic candidiasis" syndrome. Kutapressin (a porcine liver extract) demonstrated benefit for CFS patients in an "open" trial but there are no results from placebo-controlled studies. The results of these studies must be viewed as preliminary and all of these medications are considered "experimental" for use in CFS patients. None are recommended for routine use until further studies confirm that they are safe and effective. ----------------------------------------------------------------- This Web Page was "borrowed" from one formatted by Michael McGoodwin, M.D. Last Update: 18 June 1996 This Page: http://weber.u.washington.edu/~dedra/managmt.html
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Fibromyalgia is a common and disabling disorder affecting up to 15% of the population (according to a study at McMaster University), women more often than men. Despite the condition's frequency, the diagnosis is often missed. Patients with fibromyalgia usually ache all over, sleep poorly, are stiff on waking, and are tired all day. There are no diagnostic lab or x-ray abnormalities, but a physician can confirm the diagnosis by finding multiple tender points in characteristic locations.
There is ... evidence that fibromyalgia is due to an abnormality of deep sleep. Abnormal brain waveforms have been found in deep sleep in many patients with fibromyalgia. Fibromyalgia-like symptoms can be produced in normal volunteers by depriving them of deep sleep for a few days. Excerpts from: Fibromyalgia -- a guide for patients David A. Nye MD, 13Aug95 (updated with Canadian study information from McMaster University)
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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.
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.
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.
NMH is the acronym for neurally mediated hypotension, which is also known by the following names: the fainting reflex, neurocardiogenic syncope, vasodepressor syncope, the vaso-vagal reflex, and autonomic dysfunction. Neurally mediated hypotension occurs when there is an abnormal reflex interaction between the heart and brain, both of which are usually structurally normal.
In individuals with neurally mediated hypotension, there is a "miscommunication" between the heart and the brain. Just when the heart needs to beat faster (for example, to pump blood to the brain preventing fainting), the brain sends out the message that the heart rate should be slowed, and that the blood vessels in the arms and legs should dilate. The latter actions take even more blood away from the central part of the circulation, where it is needed. In response, individuals feel lightheaded or may faint because not enough blood is getting to the brain.
We are all susceptible to activation of the vaso-vagal reflex, which results in a lowered blood pressure. However, each person's susceptibility is affected by his or her genetic make-up, dietary factors, psychological make-up and acute triggers such as infection and allergy. The clinical problem of NMH occurs when there is sufficiently early triggering of this reflex to cause symptoms.