Treating the Most Disruptive Symptoms First and Preventing Worsening of Symptoms

Healthcare providers and patients need to establish which symptoms are most disruptive or disabling and tailor management plans accordingly. Treatment should be directed toward the most problematic symptoms as prioritized by the patient. It is also important to incorporate strategies to prevent worsening of symptoms into initial and subsequent treatment plans.

Post-exertional malaise (PEM)

Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing). The goal is to avoid PEM flare-ups and illness relapses by balancing rest and activity.

Patients need to determine their individual limits for mental and physical activity, and plan activity and rest to stay within these limits. Some patients and healthcare providers refer to staying within these limits as staying within the “energy envelope.” Limitations may be different for each patient. Keeping individual activity and symptom diaries may be helpful to patients in identifying their personal limitations, especially early on in clinical care. Healthcare providers need to keep in mind that when patients with ME/CFS exceed their individual capacities, PEM and serious deterioration of function may result. In general, patients should not push themselves beyond their capacities as this may exacerbate the symptoms and trigger PEM. When patients experience improvement, activities can be cautiously increased with monitoring for any negative effects. Patients need to be advised about “push and crash” cycles: patients sometimes respond to having a “good day” by subsequently doing too much to make up for “lost time,” and then relapsing.

Any activity or exercise plan for people with ME/CFS needs to be carefully designed based on individual presentation with input from each patient. If possible, evaluation by a rehabilitation specialist may be beneficial. For some patients, even daily chores and activities such as cleaning, preparing a meal, or taking a shower can be difficult and may need to be broken down into shorter, less strenuous pieces. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful to patients with ME/CFS.

However, it is important that patients with ME/CFS maintain activities that they can tolerate since deconditioning is also harmful to patients. For some patients, it might be first necessary to treat orthostatic intolerance and improve patients’ capacities to tolerate being upright before any activity can be considered for careful implementation. Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning. Some healthcare providers with expertise in ME/CFS refer their patients to an exercise physiologist who understands ME/CFS and uses an individualized and flexible approach to advancing activity levels. If exercise plans are not designed and executed carefully, patients may experience setbacks and serious deterioration in function and health. Expectations need to be managed, as exercise cannot be expected to be a cure. However, improved function is a long-term goal of managing ME/CFS; tolerance of aerobic exercise and normal levels of activity is also a long-term goal that can be related to improved function but should be pursued cautiously as described above.

For some pediatric patients with ME/CFS, activities of daily living, education, and social engagement can result in PEM, while for other pediatric patients with ME/CFS, such activities with careful planning might sometimes be well-tolerated. Starting an exercise program for a patient who cannot tolerate or barely tolerates routine activities can be counterproductive and even harmful. However, for some patients with less debilitating symptoms, a carefully managed exercise routine can help improve functionality and yield enjoyment. It is important to ensure that exercise is not increased prematurely, as excessive exertion might result in PEM. As for adults with ME/CFS, achieving the optimal balance between activity and rest while preventing PEM symptoms requires “trial and error.”

A particularly important aspect of illness management for the pediatric patient population is to help children continue their education and stay connected with their friends. Healthcare providers can work with young patients and their school administrators to create a study plan that will accommodate the needs of individual patients. Healthcare providers can play critical roles in ensuring that schools provide optimal support for students with ME/CFS. This support needs to begin while children are being evaluated for ME/CFS. Some children with extreme fatigue and cognitive dysfunction might need accommodations such as part-time schooling or home tutoring. The occasional patient might need to withdraw from school until symptoms have improved enough to tolerate part-time classwork. For additional helpful tips on this process, see Pediatric ME/CFS Fact Sheet for Healthcare Professionals.

Orthostatic Intolerance

Many patients with ME/CFS may also experience triggering or worsening of symptoms when moving to and/or maintaining an upright posture. This is known as orthostatic intolerance. Symptoms of orthostatic intolerance can include frequent dizziness and light-headedness, palpitations, and feeling faint. Adolescents are particularly affected by this manifestation. As patients may not recognize that they have orthostatic intolerance, it can be helpful to ask additional questions to elicit this information:

• How do you feel when you have been standing still for more than 1-2 minutes?
• What happens after you get up rapidly from sitting for a long time?
• How long can you stand before feeling ill? For example,
  • Can you do the dishes?
  • Can you stand in a line for a bus or movie?
  • Are you able to grocery shop or be at the mall for more than a few minutes?
  • Can you take a hot shower or hot bath without feeling tired and lightheaded?

Direct measures of OI can be obtained with a relatively simple standing test, such as the NASA lean test. A formal tilt table test may be considered. These tests are not required for diagnosis, but will identify patients with an abnormal response to standing; increased heart rate (also known as POTS or postural orthostatic tachycardia syndrome), and/or low or high blood pressure (known as orthostatic hypo- or hypertension). Patients with symptoms of orthostatic intolerance can benefit from evaluation by a cardiologist and/or neurologist.

Strategies to address orthostatic problems include:

• Avoiding factors that aggravate symptoms (hot environments, prolonged standing, inadequate salt and fluid intake)
• Increasing salt and fluid intake for those patients with ME/CFS who do not have hypertension, renal failure, congestive heart failure, or other contraindications
• Postural counter-maneuvers
• Compression and cooling garments

If symptoms do not improve with these non-pharmacological measures, prescription medications for the management of postural orthostatic tachycardia syndrome (POTS) and neurally mediated hypotension (NMH) as well as prescription-strength support stockings can be helpful.

Sleep Problems

Patients with ME/CFS have non-restorative sleep and wake up less refreshed than they did before becoming ill. Common sleep complaints in patients with ME/CFS include frequent awakening, intense and vivid dreaming, restless legs, and nocturnal myoclonus (night-time muscular spasm), and awakening unrefreshed.  Some also experience difficulty falling asleep and hypersomnia (extreme sleepiness).

When patients follow good sleep hygiene techniques but are still waking unrefreshed, sleep medication might be indicated. Initial medications to consider are over-the-counter sleep products. If this does not improve sleep quality, healthcare providers may prescribe medication for sleep starting at the smallest dose and using for the shortest possible time.

Unrefreshing sleep can be present even though medications may help patients achieve required hours of sleep. If possible, a sleep specialist may evaluate patients whose sleep remains non-restorative following standard interventions. It is very important for healthcare providers to get a careful sleep history and recommend a sleep study if indicated.

People with a primary sleep disorder such as sleep apnea or narcolepsy may benefit from treatment but, if the person also has ME/CFS, not all ME/CFS symptoms will go away with treatment of the sleep disorder.

A subset of patients with ME/CFS are affected so severely that many standard recommendations regarding sleep such as those for sleep hygiene are not sufficiently helpful or might have limited applicability.

Pain

People with ME/CFS often experience deep pain in their muscles and joints. Patients may also complain of headaches (typically pressure-like or migraine-like) and sensitivity of their skin when touched.

Over-the-counter pain relievers, like acetaminophen, aspirin, or ibuprofen, can be considered first. If these do not provide enough pain relief, evaluation by a pain specialist may be indicated. As for any patient with chronic pain regardless of etiology, counseling for pain management techniques is also advisable and can be helpful.

Other non-pharmacological pain management methods can also be beneficial to some patients with ME/CFS, including stretching and movement therapies, manual physical therapy, gentle massage, heat, toning exercises, and hydrotherapy. While methods that involve physical activity such as stretching might be helpful, initiating or resuming stretching and movement therapies require careful consideration to avoid post-exertional malaise. Acupuncture, when done by a licensed practitioner, might help with pain for some patients.

Memory and Concentration Problems

For some patients with ME/CFS, memory problems might be managed to some extent by using memory aids such as organizers or portable notebooks to record information, like to-do lists, appointments, and people’s names. Electronic devices such as smartphones and tablets can offer an additional bonus of setting reminders for medications and appointments.

As with physical activity and exercise, patients should employ careful planning and monitoring of cognitive activities throughout the day to avoid mental overexertion (see also post-exertional malaise). Planning periods of rest after any anticipated mental activity is critical in avoiding exacerbation of symptoms. Some patients may need to avoid highly stimulating activities based on their individual capacities.

Caution is warranted in prescribing stimulants for cognitive problems. Mild stimulants may be helpful for some patients, but stronger stimulants can lead to a relapse as patients may attempt to do too much when they feel better (the so-called “push-crash cycle:” do too much, crash, rest, start to feel a little better, do too much once again, and so on). Patients need to be followed carefully to monitor for insomnia, weight loss, and other adverse effects. Many stimulants can be habit-forming, and tolerance may develop if used daily.

Depression and Anxiety

Patients with chronic illnesses sometimes develop psychiatric illness as a co-morbid condition with their chronic illnesses, and some might have psychiatric illness preceding, but not causative of, their chronic illnesses. As many as half of patients with ME/CFS develop depression at some time during the course of their illness. Brief psychiatric screening tools can be given and scored in the primary care setting. When the results of such a tool or other assessment suggest possible depression or other psychiatric diagnoses, that condition should be managed. Referrals to mental health professionals may be warranted either alone or in combination with medication.

Although treating these comorbid conditions can be helpful, such treatment is for the conditions and does not cure ME/CFS.

Some patients with ME/CFS who are clinically depressed may benefit from antidepressants. However, healthcare providers should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects, particularly sedation and orthostatic hypotension. If prescribed, medication for depression should be started at a low dose with careful monitoring for side effects. As for all patients starting anti-depressants, improvement might not occur for several weeks.

To reduce stress and anxiety without medication and promote a sense of well-being, less severely affected patients with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies (such as stretching, yoga, and tai chi). While methods that involve physical activity might be beneficial for some patients with ME/CFS, initiating or resuming these or other movement therapies requires careful consideration to avoid post-exertional malaise.

Disclaimer: The content of this ME/CFS website is for informational purposes only and does not represent a federal guideline or recommendation for the treatment of ME/CFS. The information provided on this website is not intended to be a substitute for the medical judgment of the healthcare provider and does not indicate an exclusive course of action or treatment.