Chronic Fatigue Syndrome Chronic Fatigue Syndrome
Center for Disease Control and Prevention
Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure yet, no prescription drugs have been developed specifically for CFS, and symptoms vary considerably over time. These factors complicate the treatment picture and require you and your health care team to constantly monitor and frequently revise treatment strategies.
It may take some time to find a combination of traditional and alternative therapies that works for you, but it’s important not to delay symptom management. For instance, untreated sleep problems can actually make other symptoms—like pain and memory problems—worse.
One key to managing CFS is working with your doctor and other health care practitioners to create an individualized treatment program for you. This program should be based on a combination of therapies that address coping techniques, symptoms and activity management.
A multidisciplinary team of health care professionals working together to develop this individualized care plan is ideal. This team might include physicians and other primary care professionals, mental health professionals, rehabilitation specialists and physical or exercise therapists. Other professionals, like a sleep therapist or dietician, can be added as needed, and you may only need one or two consultations with such specialists.
If you live in an area where you don’t have access to specialists, or if your insurance professional doesn’t cover such consultations, you can still work with your primary care professionals to develop an effective treatment plan.
Coping with CFS
Living with chronic fatigue syndrome can be difficult. Like other debilitating chronic illnesses, CFS can have a profound impact on daily life, requiring patients to make significant lifestyle changes and adapt to a series of new limitations.
Common difficulties for CFS patients include problems coping with:
the severe, changing and unpredictable symptoms of varying severity
a decrease in stamina that interferes with activities of daily living
memory and concentration problems that seriously impact work or school performance
an uncertain prognosis that makes it hard to plan for the future
loss of independence, livelihood and economic security
alterations in relationships with family and friends
worries raising children
concerns about the potential impact of decreased sexual activity on intimate relationships
skepticism and misconceptions about the illness
Feelings of anger, guilt, anxiety, isolation and abandonment are common in CFS patients. While it’s normal to have such feelings, unresolved emotions and stress can make symptoms worse, interfere with pharmacological therapies and make recovery harder. It’s important for patients to acknowledge the life-altering changes imposed by their illness and to develop effective coping strategies to deal with these changes.
Consulting a trained professional will help most patients build effective coping skills. A supportive counselor can help you cope with the prospects of long-term illness, as well as the anxiety, depression, grief, anger and guilt that often accompany chronic illness. A competent therapist, using problem-solving techniques and standard psychotherapy and counseling methods, can help you work through these issues. In some cases, a therapist may recommend a combination of medication and psychotherapy.
Because chronic illnesses like CFS impact the entire family, not just the patient, you may want to consider family education and counseling. Consulting a behavioral health professional may be helpful to address changes in family dynamics related to living with CFS.
Cognitive Behavioral Therapy (CBT)
Cognitive behavioral therapy, or CBT, is often prescribed to help chronically ill patients cope with illness and develop behaviors and strategies that help alleviate symptoms. It has been successful in helping patients with cardiovascular disease, diabetes and cancer, and recent studies indicate that CBT can be useful in treating some CFS patients.
CBT is frequently prescribed as part of therapeutic process; it help patients learn to manage activity levels, stress and symptoms. Optimally, CBT can help you better adapt to the impact of CFS and improve your level of function and quality of life.
People with CFS present with different patterns of primary symptoms. Symptom severity can also vary considerably. Clinicians should query patients about which symptoms are most disruptive or disabling and tailor the management plan accordingly. Treatment can be directed toward the most problematic symptoms as prioritized by the patient, but only after underlying conditions applicable to those symptoms have been investigated and excluded.
Primary symptoms may include sleep problems, muscle and joint pain, cognitive dysfunction, fatigue, headaches and sore throat. Gastrointestinal complaints, orthostatic instability, depression and allergies are also seen in many patients. Aggressive symptom management for these and other disruptive symptoms is indicated.
Deep breathing and muscle relaxation techniques, massage and healing touch, and movement therapies like stretching, yoga and tai chi can be beneficial for some CFS patients in reducing anxiety and promoting a sense of well-being.
Be sure to discuss all potential alternative therapies with your health care professional since many so-called cures and treatments for CFS that are promoted on the Internet are unproven and could be dangerous.
Many people with CFS find it therapeutic to meet with other people who have this illness. Support groups can provide patients with useful, current information, and they can provide a sense of community with people who understand what you’re going through.
For information on how to select a support group, what kinds of groups to avoid and how to find a group in your area, click here.
Managing Activity and Exercise
For patients with CFS, learning to manage activity levels is key to managing the illness itself. This requires a new way of defining exercise. While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can’t tolerate traditional exercise routines. Exercise programs aimed at optimizing aerobic capacity are not recommended.
The majority of people with CFS are affected by postexertional malaise, which is defined as an exacerbation of symptoms following physical or mental exertion, with symptoms typically worsening 12-48 hours after activity and lasting for days or even weeks. It’s important, however, not to avoid activity and exercise altogether. Such avoidance leads to serious deconditioning and can actually worsen other symptoms. It’s also important not to engage in an endless “push-crash” cycle in which patients do too much, crash, rest, start to feel a little better, do too much again, and so on.
Instead, CFS patients must learn to pace activities and work with their health care professionals to create an individualized exercise program that focuses on interval activity or graded exercise. The goal is to balance rest and activity to avoid both deconditioning from lack of activity and flare-ups of illness due to overexertion. Effective activity management may help improve mood, sleep, pain and other symptoms so patients can function better and engage in activities of daily living.
Developing an Exercise Program
It is imperative that any activity plan be started slowly and increased gradually. When beginning an activity program, some CFS patients may only be able to exercise for as little as a few minutes Patients who are severely deconditioned or who are caught in the “push-crash” cycle should limit themselves to the basic activities of daily living – getting up, personal hygiene, dressing, essential tasks – until they have stabilized.
Several daily sessions of brief, low-impact activity can then be added. Simple stretching and strengthening exercise using only body weight for resistance is a good starting place for most people with CFS. All exercise needs to be followed by a rest period at a 1:3 ratio, exercising for one minute, then resting for three minutes. These sessions can be slowly increased by one to five minutes a week as tolerance develops.
Daily exercise can be divided into two or more sessions to avoid symptom flare-ups. Activity should be intermittent, brief, spread throughout the day and followed by rest. If patients experience a worsening of symptoms, they should return to the most recent manageable level of activity.
Strength and conditioning exercises are an important component of the overall activity program. Standard rehabilitative methods, such as resistance training and flexibility exercises, may help improve stamina and function, increase strength and flexibility, reduce pain and increase range of motion.
Activity should begin slowly with simple stretching and strengthening exercises. Examples of functional exercises include repeated hand stretches, sitting and standing, wall push-ups or picking up and grasping objects. Patients can begin with a set of two to four repetitions, building to a maximum of eight repetitions. Once this stage is mastered, resistance band exercises can be added to build strength and flexibility. Patients should be careful to adhere to the principle of brief intervals of exercise, followed by adequate rest, to avoid postexertional malaise.
Severely Ill Patients
A subset of people with CFS are so severely ill that they’re largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point patients can handle essential activities of daily living-getting up, personal hygiene and dressing-is the next step.
A realistic goal with severely ill patients is focusing on improving flexibility and minimizing the impact of deconditioning so they can increase function enough to manage basic activities.