Pacing for CFS (Chronic Fatigue Syndrome)

The information shown on this page has been crowd-sourced anonymously from members of the Bearable community who live with ME/CFS and who have used Pacing as part of their self-management routine.

2.4

out of 5

Some improvement

in ME / CFS

3.9

out of 5

Moderate improvement

in Well-being

95%

of reviews reported

An improvement

in some aspect of health

Reviews of Pacing for CFS

We asked members of the Bearable community to share their recommendations and reviews of their experience using Pacing for CFS.

Pacing is the only thing that helped with almost all ME/CFS Symptoms. It means frequent/active resting before symptoms appear. I paced with the help of a heart rate monitor, never going above 50-60% of my max heartrate.

Take breaks throughout the day. If you’re doing a larger activity then take rest days before and after. Learn to listen to your body. If you feel able then do things. If you don’t, then stop and rest even if you have to rest for hours or days

For me, pacing is something that needs to happen every day, all the time. It’s about accepting the necessity of listening to what your body needs and understanding that rest is vital and your day may not look like other people’s and that’s ok. It is not just valid, but it is fundamental to your QAL to value your own health and care – even when it makes you feel guilty, or selfish, or lazy.

You must go very slow and careful at first. It might take a long time to get better.

Pacing is the only thing that helps people who suffer from Post Exertional Malaise or Post Exertional Symptom Exacerbation.

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What is Pacing?

Pacing is a self-management strategy used to manage symptoms of Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME/CFS). It involves carefully balancing activity and rest to prevent the exacerbation of symptoms, particularly post-exertional malaise (PEM), which is a hallmark of the condition. PEM is a worsening of symptoms following physical or mental exertion that can last for days, weeks, or even longer.

How Pacing for CFS Works

The core principle of pacing is to stay within your “energy envelope,” which is the range of activities you can perform without triggering PEM. Here’s how pacing can be effectively used to manage CFS symptoms.

1. Understanding Your Energy Limits.
  The first step in pacing is to become aware of your energy limits. This involves monitoring your daily activities and their impact on your symptoms. Keeping a diary or using an app can help track patterns of activity and rest (source).
2. Breaking Down Activities.
  Divide tasks into smaller, manageable parts. For example, instead of cleaning the entire house in one go, you might clean one room at a time with breaks in between (source).
3. Prioritizing and Planning.
  Prioritize essential activities and plan your day around them. Spread out tasks over several days rather than trying to accomplish everything at once (source).
4. Regular Rest Periods.
  Schedule regular rest periods throughout the day, even if you don’t feel tired. Resting before you feel fatigued helps prevent overexertion (source).
5. Avoiding Boom-and-Bust Cycles.
  A common pattern for people with CFS is the “boom-and-bust” cycle, where a person does too much on good days (“boom”) and then crashes afterwards (“bust”). Pacing helps avoid this by maintaining a steady level of activity (source).
6. Using Tools and Assistance.
  Utilize tools, aids, or help from others to reduce the energy expenditure on tasks. For example, using a shower chair or having someone assist with errands can conserve energy (source).
7. Setting Boundaries
  Be mindful of overcommitting to social, work, or personal activities. Setting boundaries helps prevent exceeding your energy limits (source).

Benefits of Pacing for CFS

- Reduces the Frequency and Severity of PEM.
  By staying within your energy envelope, you can reduce the chances of triggering PEM.
- Improves Quality of Life.
  Pacing can help you achieve a more stable and manageable daily routine, leading to better overall well-being.
- Promotes Long-Term Management.
  Pacing isn’t a cure, but it can be an effective tool for managing the unpredictable nature of CFS over time.

Source. National Institute for Healthcare Excellence.

What is CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic illness characterized by extreme fatigue that doesn’t improve with rest and worsens with physical or mental activity.

The condition affects multiple body systems, including the nervous, immune, and endocrine systems. ME/CFS can significantly impair daily functioning, often leading to a substantial reduction in physical and cognitive abilities.

Common CFS Symptoms.

1. Post-Exertional Malaise (PEM).
  A worsening of symptoms following physical or mental exertion, which can last for days, weeks, or even longer.
2. Unrefreshing Sleep.
  Despite sleeping for long periods, individuals with ME/CFS often wake up feeling unrefreshed.
3. Cognitive Impairment.
  Often referred to as “brain fog,” this includes difficulties with memory, concentration, and information processing.
4. Orthostatic Intolerance.
  Symptoms worsen when standing or sitting upright for prolonged periods.
5. Muscle and Joint Pain.
  Widespread pain without swelling or redness is common.

Information sourced from the Mayo Clinic.

Possible Causes of CFS.

While the exact cause of ME/CFS is unknown, it may be triggered by various factors, including:

- Viral infections (e.g., Epstein-Barr virus)
- Immune system problems
- Hormonal imbalances
- Genetic predisposition

CFS Diagnosis and Challenges.

- Diagnosis: ME/CFS is diagnosed based on a combination of symptoms, as there is no definitive test. Doctors typically rule out other conditions before diagnosing ME/CFS.
- Challenges: The illness is poorly understood, and its exact cause is unknown. This has led to difficulties in diagnosis, treatment, and recognition by healthcare systems.

Treatment and Management of CFS.

As there is no cure for ME/CFS, treatment focuses on managing symptoms. This may include:

- Pacing.
  Managing activity levels to avoid triggering PEM.
- Medications.
  For pain, sleep disturbances, and other symptoms (source).
- Cognitive Behavioral Therapy (CBT).
  Sometimes used to help cope with the illness, though it’s controversial and not effective for everyone.
- Graded Exercise Therapy (GET).
  A gradual increase in physical activity, but this approach is also controversial and can worsen symptoms in some patients.

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