Part 2: Living with Chronic Fatigue Syndrome

There is currently no cure for CFS. For the majority of individuals, CFS is lifelong and the likelihood of making a return to the pre-illness level of functioning is estimated to be less than 10%. This, for many, is the most bitter pill to swallow. Nonetheless, this does not mean there is nothing one can do about it.

Some of the common approaches that can help with managing symptoms and improving quality of life include: 

1. Rest and Pacing 

Pacing is a strategy to help you keep within your available energy. Learning to balance activity with rest and pacing daily activities can help those affected by CFS to achieve stability in symptoms and prevent further fatigue.

We have prepared some tips and tricks to help you with this. For starters, divide physical activity into smaller portions with sufficient rest intervals in between. Keep a record of your activities in a diary and track symptoms as you gradually increase or decrease your activity levels to determine what is sustainable. 

Additionally,  alternating between physical and cognitive activities helps distribute the energy required. Pinpoint the activities that drain your energy the most and schedule additional rest time before and after. Refrain from engaging in too many energy-draining activities on the same day.

Pay attention to the signals your body is giving you. The key here is to try your best to prevent severe episodes of fatigue and exhaustion.

2. Exercise safely

Exercising does not repair the root cause of CFS but when it is done safely, it can effectively enhance one’s functional strength and fitness level. The tricky part, however, is that due to the energy-limiting nature of CFS, exercises frequently make those suffering with CFS feel worse rather than better. Hence, all exercises should be carefully thought-out prior. 

The general advice that you should follow is to try different types of physical exercises to determine which one suits you the best. Opt for low-impact gentle exercises such as yoga, stretching, seated tai chi, walking, and light weight lifting. It is worth noting that some people may find exercises performed while lying down less taxing. Individuals with CFS often experience a temporary feeling of well-being immediately after exercising, followed by a crash later on. Therefore, it is important to keep track of how you feel for hours to days after exercising, you can use the same diary as aforementioned too. 

Ultimately, do not allow yourself to be coaxed into pushing past your physical or mental limits as this is not only hazardous to your health but also often results in long-lasting setbacks. 

3. Stepwise symptoms management 

There are four different severity levels of CFS that your doctor might rank your symptoms to. The severity levels correlate to the disability levels such that- 

• mild: 50% reduction in pre-illness activity

• moderate: mostly housebound

• severe: mostly bedridden

• very severe: bedridden and need help with basic activities including nutrition and hydration

Collaborate with a trusted clinician to explore options for managing your symptoms, beginning with the one that is having the most detrimental effect on your quality of life.

It may also help if you have good sleep hygiene. For example, going to bed and waking up at regular times, limiting daytime napping,  and avoiding stimulants such as caffeine, alcohol, and nicotine. If you have issues such as muscle or joint pain, you can visit a doctor to get the suitable painkiller medications. Complementary therapies such as meditation, gentle massage, deep breathing, or relaxation therapy might be helpful too.

Eventually, none of the options listed here is a one-size-fits-all approach. Every individual’s journey with CFS is unique. Thus, the most important of all is to locate yourself a doctor who not only you can work closely with to tailor a care plan for all your specific needs but also one who can empathise with your emotional experiences. 

Long COVID

Long COVID, by the definition of World Health Organizations, refers to the symptoms that emerge within three months of the COVID-19 infection and persist for a minimum of two months. The relevance of Long COVID in the discussion of CFS lies on the key that the lingering symptoms of COVID-19 can manifest in a variety of ways due to the organ damage in lung or heart by the viral infection. 

Hence, it is logical that one could develop a condition similar or even identical to CFS with the characteristic features of exertion intolerance and post-exertional malaise (PEM) due to Long COVID. The management strategies outlined on this page, such as pacing and rest, may prove useful for individuals experiencing CFS-like symptoms due to Long COVID.

All in All 

Chronic Fatigue Syndrome is a challenging condition that can have a significant impact on an individual's quality of life. It is important to recognize that CFS is much more than just feeling tired and dismissive attitudes towards it can be detrimental. By understanding the symptoms, causes, and treatments of CFS, individuals with the condition can take control of their health and improve their overall wellbeing. With the right care and support, it is possible to overcome the challenges of CFS and live a fulfilling and rewarding life. Here are 4 key takeaways from this article: 

1. CFS is a complex multisystem disease characterised by overwhelming fatigue, cognitive dysfunction and sleep problems which can affect activity of daily living.

2. People with CFS can experience a wide range of common symptoms that reduce their ability to function. These symptoms are frequently worsened after minimal physical or mental activity. They are not just tired. 

3. The cause of CFS is not understood and there is currently no evidence-based cure. 

4. Pacing and rest alongside exercising within the energy envelope are two of the most commonly-used and effective self management strategies for CFS.  

This article is written by Ke Feng, Bpharm(Hons) DOC2US, 
reviewed by Dr. Lee Siew Ling, MD (DOC2US)

REFERENCES:

1. Better Health Channel. (2022). Chronic Fatigue Syndrome (CFS). Retrieved from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
2. HealthDirect. (2022). Myalgic Encephalomyelitis (ME) / chronic fatigue syndrome (CFS). Retrieved from https://www.healthdirect.gov.nau/chronic-fatigue-syndrome-cfs-me
3. Centres for Disease Control and Prevention. (2023). Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Retrieved from https://www.cdc.gov/me-cfs/index.html
4. Sapra, A. (2022). Chronic Fatigue Syndrome. StatPearls - NCBI Bookshelf. https://www.ncbi.nlm.nih.gov/books/NBK557676/#!po=98.4043 

Written by

Ke Feng, Bpharm(Hons) DOC2US