Managing chronic fatigue syndrome can be as complex as the illness itself. Options for treating and managing CFS may include treating the most disruptive symptoms such as fatigue due to sleep problems, pain, and lightheadedness. CFS symptoms can vary over time and may require periodic re-evaluation. Primary care providers can develop effective treatment plans based on their experience in treating other complex illnesses. Management may require input from a variety of healthcare professionals (e.g. medical doctors, rehabilitation specialists, mental health professionals, and physical or exercise therapists) when available.
A management program should address:
Varying and unpredictable symptoms
A decrease in stamina that interferes with activities of daily life
Memory and concentration problems that adversely affect school performance
Changes in relationships with family members and friends
Doctors, family members, and patients need to communicate with one another about which symptoms are most disruptive or disabling so they can tailor the management plan accordingly. Treatment can be directed toward the most problematic symptoms as agreed upon by the patient, family members and doctors.
When family members and children communicate with doctors about the child’s lifestyle and behaviors, they can make important distinctions. For instance, whether the child’s lack of usual energy is because of fatigue or the result of normal changes in sleep cycles that may begin at puberty. Such distinctions are important because they affect the management plan for the child.
Fatigue Due to Sleep Problems
Many CFS patients, including children and adolescents, experience sleep problems. Common sleep complaints include difficulty falling or staying asleep, daytime sleepiness, frequent awakening, and intense and vivid dreaming. Adult patients report that they feel less refreshed and restored after sleep than they felt before they became ill.
In young children, this problem is detected by a lack of their usual energy. Sleep problems in adolescents with CFS may be challenging to detect, as sleep cycles may begin to change with the onset of puberty, such as staying up later and sleeping in. The demands of school classes, homework, after-school jobs, and social activities also affect sleep patterns.
Doctors can help people with CFS adopt good sleep habits. Patients should be advised to practice standard sleep hygiene techniques:
Establish a regular bedtime routine
Avoid long naps during the day
Control noise and light (limit or remove music or screen exposure-TV, other and all electronic devices) prior to bed for the night as part of an extended wind-down period
Get natural light exposure in the morning, preferably before school
Use the bed only for sleep
Try light exercise and stretching earlier in the day, at least four hours before bedtime
Children and adolescents with CFS do not commonly experience muscle and joint pain, as do adult CFS patients. Yet headaches and abdominal pain may be more common in children and adolescents with CFS, and pain and sleep difficulty often go hand-in-hand. Children may not be able to express pain, or they may describe it poorly. Therefore, observations of lifestyle and behavior are critical to good management of symptoms. Doctors should attempt to identify the origin of the pain and then discuss with patients and family members the use of pain-relieving medications. Doctors should be cautious in prescribing pain-relieving medication because some may cause side effects.
Depression and Anxiety
Adjusting to a chronic illness can sometimes lead to symptoms of depression and anxiety. Anxiety in children and adolescents with CFS is not caused by the illness itself, but can develop because of the adjustments the child must make in order to manage the condition. Counseling may be helpful in reducing stress and symptoms of depression and anxiety, for example, sleep problems and headaches.
Some children might also benefit from antidepressants and anti-anxiety medications. However, doctors must review recommendations and consider the usual concerns about prescribing these medications for children and adolescents. Antidepressant drugs of various classes have other effects that might worsen CFS symptoms and cause side effects. When doctors are concerned about patients’ psychological conditions, they may make a referral to a mental health professional.
Although treating depression and anxiety can reduce psychological distress and impairment in some patients, it is not a cure for CFS.
Orthostatic intolerance (OI) is the development of a set of characteristic symptoms while standing or sitting upright. Compared with adult CFS patients, OI is more common in adolescents with CFS. Adolescents may exhibit symptoms of OI, such as frequent lightheadedness. The symptoms may be triggered or made worse by prolonged sitting or standing upright.
Initially, conservative treatment of OI can involve several things. Doctors may suggest that patients increase daily fluid and salt intake and make postural adjustments (like getting up more slowly and using muscle contractions in the legs to help better tolerate upright posture). When possible, patients can also use compression garments such as support hose, girdles or abdominal binders. If symptoms continue to be severe and are not relieved by these conservative measures, consultation with a cardiologist or neurologist may be beneficial for adolescents.
CFS patients frequently report experiencing post-exertional malaise or post-exertional relapse, which is the exacerbation of symptoms following physical or mental exertion. This relapse typically lasts 12-48 hours after activity and could even last days, weeks, or months. For patients with CFS, managing activity levels is a key part of managing the illness. It is important to find a balance between inactivity and excessive activity, which can aggravate CFS symptoms. This often requires a new way of thinking about daily activities. For example, daily chores and school activities may need to be broken down into shorter time frames. A symptom diary can be very helpful for managing CFS. Keeping daily track of how patients feel and what patients do, may help to find patterns or identify triggers when symptoms start to affect daily activities.
Parents may work with teachers and administrators to redefine expectations of activity and performance for children with CFS. It is true that exercise can benefit children with certain chronic illnesses. While the overall goal is to help CFS patients tolerate exercise again, children with CFS should avoid activity that results in aggravated CFS symptoms. Activity programs aimed at vigorously increasing aerobic capacity are not recommended.