What causes PEM?

Research suggests that PEM might be the result of many different systems in the body not working as they should. These include:

• Problems with how cells make energy
• Inappropriate immune response to physical or mental activity
• Problems with directing blood and oxygen to places such as the brain and muscles
• How your genes “express” themselves

These problems are not due to deconditioning. They are signs from your body that you need to rest.

How is PEM diagnosed?

There is no single test to diagnose PEM. Diagnosis of PEM often relies on a clinical assessment considering symptoms and response to activity.

Clinical assessment: A doctor will ask about symptoms, including the onset and severity of fatigue, cognitive difficulties, muscle pain, and how the symptoms worsen after physical or mental exertion.

Excluding other conditions: The doctor will perform a physical examination and order blood tests to rule out other medical conditions that could cause similar symptoms.

Two Day CPET: This exercise test is considered the gold standard for objectively assessing PEM. During the test, a patient exercises to exhaustion on the first day, and then repeats the test the next day, where a significant decline in performance indicates PEM.

What is a PEM ‘push and crash’ cycle?

PEM can lead to a cycle of “pushing” to do more, followed by “crashing.” Triggers can be either mental, emotional or physical. During a PEM crash, people may have a variety of symptoms. These can include difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, loss of appetite, pain or severe tiredness. It may take days, weeks, or longer to recover from a crash.

For some people, PEM crashes are an inevitable part of living with PEM. Although crashes can be difficult to predict, there are some things you can do to reduce their frequency, minimise their severity and or duration. You can also make a crash plan with your health care team.

Common symptoms of PEM include?

• Pain
• Sleep problems
• Brain fog (problems with concentrating, processing information and memory)
• Flu-like symptoms (sore throat, muscle pain, increased fatigue) muscle weakness
• Increase in sensitivity to noise, light or touch

Everyone is different and you may need to work out what PEM feels like for you.

How is PEM managed?

Medicines: there are no medicines to help with PEM.

Self-Management:

• Pace yourself: Learn your limits and stay within them
• Start slowly: Start with activities that feel supportive and encouraging
• Monitor your symptoms: Keep a diary to identify what activities trigger PEM
• Be aware of “push and crash” cycles: Pushing yourself too hard can make symptoms worse

Exercise and PEM: The right exercise depends on multiple factors.

• The challenge is to not overdo it and learn to adjust to less activity than before
• Gentle exercise programs that focus on building functional strength, rather than aerobic exercise i.e. low-impact exercises such as walking, swimming, aquatic-based exercises, or cycling may be helpful
• Tailored exercise program by an Exercise Physiologist or Physiotherapist

A Heart Rate Monitor (HRM) is just one tool that can be used in your toolkit to manage PEM. Using a HRM may not be suitable for everyone. One way to track your heart rate is to count the beats, using a heart rate monitor, such as Polar FS, FitBit, Garmin, and iWatch.

Counselling: People find that counselling can help when dealing with the emotional aspects of PEM. A psychologist or social worker may also be an important person in your healthcare team.

Healthy eating and lifestyle: You can also play an active role by not smoking, reducing stress, and eating a healthy diet.

Who can help?

A Physiotherapist can assess, diagnose, and treat conditions that affect movement and pain. Exercise Physiologist can assess, plan, and implement exercise programs to help manage PEM.

Occupational Therapist can help you learn pacing techniques to do everyday activities.

Find a support group to share and learn from others living with PEM.