.CHRONIC FATIGUE SYNDROME:
A Primer For Physicians and Allied Health Professionals
© 1992 Massachusetts CFIDS Association
Approaches Not Requiring Medication
Lifestyle Changes
Depending on the severity of the illness, CFIDS will force some dramatic changes in the patient's lifestyle, including a decrease in or possibly the elimination of, some usual daily activities. The effectiveness of coping will depend on the patient's ability to prioritize goals and to set limits. Cheney has discussed this question in detail[54]:
"Patients with this disease must, for many of them for the first time, place limits on their workstyles and lifestyles. Proper limit-setting, which is always individualized, is the key to improvement in this syndrome (emphasis added).... For many patients...setting limits is very difficult because they have never had to do it before; it has not been part of their personality make-up.... For some patients, limit-setting may require short-term and even long-term disability status from their jobs. But, if limit-setting is begun early and intelligently, it may be the only thing that keeps them employed. Other lifestyle adjustments that seem to be quite important include stress reduction and exercise. Stress reduction is important since these patients are very sensitive to stress. This is a stress sensitive disease, although it is not a stress caused disease; complete elimination of stress will not cure patients.... Excessive stress, however, will flare symptoms, often severely...."
Other key suggestions:
1. A support network is essential, one that includes family, friends, etc. and promotes open communication.
2. Maintaining a sense of perspective about the illness is crucial to preventing it taking over the patient's life. A sense of humor is a very big help here.
3. Striking a balance between activity and rest is crucial though that balance may vary from time to time. Periods of rest seem vital to many in order to maintain optimal activity and to prevent relapse. It is important that patients take as much control as possible over their lives and illness rather than the illness controlling them.
4. Tailoring tasks to those that are achievable, with moderation being a key, can prevent some of the dismay often encountered. This includes the workplace, where patients may not be able to perform at their pre-illness level. Setting new, flexible, more realistic goals is vital. Modifying the work place ergonomics (lighting, stairs, work station layout, visual demands, etc.) may reduce the unnecessary, fatiguing aspects of the patients' workload.
5. Redefining a new sense of self and new pacing take time and may involve some grieving for the old self.
6. Patients must be encouraged, whenever possible, to engage in pleasurable and self-fulling activities.Exercise
Returning to Cheney's discussion[54]:
"Exercise is a double-edged sword. Some exercise, in most of these patients, appears to be largely beneficial but there is a limit beyond which, if crossed, patients will relapse, often severely. If patients move toward this limit and pull up in front of it, then they do much better than if they avoid exercise entirely. Just as in the personal case of limit-setting, however, the exercise limit may move around from day-to-day, week to week and month to month. There are times when the most exercise that patients should think about is walking across the room, but at other times, modest exercise such as walking, stationary bicycling or perhaps swimming seems to help patients, especially as they begin to improve. Avoiding exercise entirely for fear of a relapse may also be a problem. If patients lay in bed fearing a relapse of symptoms from physical effort it will over time result in the patient's inability to get out of bed and artificially contract their lifestyle."
The patient should develop an individualized program that calls for a gradual increase in exercise from simple stretching, toning, and active range of motion to a simple non-aerobic program, all as tolerated. "Listening" to the body's signals and adjusting the activity level accordingly will take time to learn. There is some question as to whether aerobic exercise is helpful or harmful. Some patients cannot tolerate even the mildest aerobic program while others, in moderation, can. If patients can tolerate some aerobic exercise without incurring more CFIDS symptoms or pain, let them proceed cautiously.In a study of fibromyalgia patients[55], half of the patients took part in aerobic exercise programs, while the remaining participated in "non-aerobic" programs. It was found that patients in the aerobic exercise program had improvement in their cardiovascular function and their pain threshold as well as global assessment scores. It is probable that this data applies to CFIDS patients.
Many patients have found physical therapy to be beneficial when provided by a physical therapist familiar with the special techniques used in treating fibromyalgia/CFIDS. The guiding principles are: 1) develop an individualized program that can be modified to adjust to variations in symptoms, and 2) avoid too rapidly-graduated or strenuous exercise.
Any form of hydrotherapy seems to be helpful in reducing both pain and discomfort as well as reducing stress. These can include moist heat packs, portable whirlpools, and hot tubs as well as swimming. Massage therapy may initially cause discomfort when applied to certain trigger points, but beneficial results can eventually be produced. Suggested techniques include myofascial massage and pressure point therapy. Use of a TENS unit (mild electrical stimulation) has also been found to be helpful. Acupuncture therapy can also be helpful especially when applied to the pathways that correspond to the fibromyalgia tender (or trigger) points[59].
Group exercise programs designed for patients with CFIDS/ fibromyalgia have recently been tried with good success for those well enough to start such programs. Patients come to know their own tolerance levels, so feedback between patient and therapist is vital.
Nutrition
a) General issues: Proper nutritional management can promote a sense of well-being. In addition to the obvious concern for adequate intake, specific problems with weight control, gastric distress, newly acquired food sensitivities, and the chore of food preparation need to be addressed. Weight loss or gain and changes in metabolism are common problems in CFIDS patients. Except for a possible link with low magnesium levels[57] no specific dietary deficiencies have been documented. In general a basic balanced diet works well. Some patients do better with frequent small meals. Most patients will need assistance with adequate planning and labor saving strategies for meal preparation.
Allergies are common among CFIDS patients, and many have food sensitivities causing them to react to even small amounts of sugars, yeasts, and milk. Often these intolerances present as G.I. disturbances including irritable bowel, gastric distention, and dyspepsia. Other food sensitivities may be linked to stomach aches, headaches, rash, fatigue, or muscle or joint pain. Caffeine, nuts, sweets, alcohol, and diet drinks may become problematic. Elimination diets are useful in pinpointing offending foods and determining the range of the problem.
b) Nutritional supplements: Vitamin and mineral supplements, particularly good quality multi-vitamins, have been found to be helpful by a number of physicians with extensive experience treating CFIDS patients. It has been speculated that vitamin utilization pathways may be blocked by excessive cytokine production[54]. However, excessive vitamin usage can be harmful, resulting in vitamin storage in excess of liver capability resulting in gastrointestinal distress. Caution should be taken with all vitamin therapies that exceed the RDA.
Anecdotally, patients and clinicians have reported benefits in treating CFIDS patients with certain supplements, including coenzyme Q10 (ubiquinone), omega 3 fatty acids (fish oil), omega 6 fatty acids (evening primrose oil), L-lysine, L-carnitine, vitamin B-12 and vitamin B-6. Periodic, moderate doses of vitamin B-12, in particular, have been mentioned as being helpful. The benefits, risks, and expense involved in such treatments need better documentation.
Psychotherapy
Counselling for both the patient and family can facilitate adjustment to CFIDS. If possible, a clinician who is already familiar with the syndrome should be consulted. The psychiatric consultation may assist in distinguishing CFIDS from primary psychiatric disorders or may help to identify and treat depression or anxiety. Medical illnesses and life stresses often precipitate major depression, with significant morbidity and mortality. Depression is, however, a treatable illness. The diagnosis of CFIDS is not invalidated by the concurrent diagnosis of depression, nor does the presence of CFIDS exclude the need for appropriate attention to depressive symptoms. As with any traumatic event, psychotherapy may be indicated to address the impact of this illness on the patient's individual development, functioning, and relationships. Children and adolescents[31], as well as young adults may be more severely affected since this illness may interfere with normal developmental tasks of establishing autonomy and an effective and satisfying social/vocational identity.
CFIDS is a prolonged, poorly understood, threatening and even stigmatized affliction which can severely stress the patient's individual coping mechanisms and social and vocational relationships. Thus the physician must assess the impact of the illness in the context of the patient's life circumstances, as well as being alert to signs of overwhelming distress that may signal the need for a competent psychotherapeutic intervention. Such signs could include aggravated interpersonal difficulties, substance abuse, unnecessary avoidance of people and activities, extreme helplessness and/or difficulty tolerating any dependency, panic, displacement of anger (blaming, lashing out), oppositionality, self-blame and guilt, and hopelessness or despair. In addition, a psychotherapist may be able to provide consultation for a patient whose alliance with physicians has been difficult.
As with any chronic illness, cognitive behavioral programs which include meditation, visual imaging, relaxation response training, and other stress reduction techniques can be potentially beneficial[58]. Cognitive restructuring and memory rehabilitation programs have been used successfully with CFIDS patients as well.