Chronic fatigue is a debilitating condition that is so much more than just feeling tired all the time. This is a tiredness that is beyond tired, plus more. It is a complex syndrome with a wide variety of symptoms that can significantly impact daily life and has become more prevalent since COVID-19 came on the scene. Those living with chronic fatigue syndrome (CFS) or Myalgic Encephalomyelitis (ME) often experience extreme exhaustion, difficulty concentrating, sleep disturbances, and more. In this blog post, we will explore the complexities of CFS/ME, from its symptoms and diagnosis to interventions and ways to make life more liveable.
Defining Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex and debilitating condition that affects millions of people worldwide. It is characterized by persistent fatigue that is not alleviated by rest and is often worsened by physical or mental activity. This overwhelming exhaustion can be severe and can significantly interfere with daily functioning. It has become much more prevelant since COVID-19.
Defining CFS is challenging because it is a multifaceted condition that varies greatly from person to person. The exact cause of CFS remains unknown. We do know it’s 4 times more common in women and often shows itself in middle age. Researchers have formulated a few theories regarding the causes of it. For instance, an infection may trigger it or certain factors could heighten the chances of developing the illness.
The impact of CFS on daily life is profound. Many individuals with CFS find it difficult to maintain employment or engage in social activities due to the severe fatigue and other symptoms. Simple tasks can become overwhelming, leading to feelings of frustration, isolation, and depression. Various factors can trigger the fluctuating severity of symptoms in CFS, making it a challenge to predict and manage. You are not crazy, this is a very real “thing”.
Suggested causes or triggers for ME/CFS include:
- viral infections, such as glandular fever
- bacterial infections, such as pneumonia
- problems with the immune system
- a hormone imbalance
- your genes – ME/CFS seems to be more common in some families
Symptoms
Chronic fatigue syndrome (CFS) is characterized by a wide range of symptoms that affect various bodily systems. The hallmark symptom, of course, is chronic fatigue that is not relieved by rest and worsens with physical or mental activity. This fatigue can be severe and debilitating, making it difficult for individuals to carry out their daily activities.
In addition to fatigue, individuals with CFS may experience post-exertional malaise (PEM), which is the worsening of symptoms after exertion. Even simple tasks that most people take for granted, such as taking a shower or engaging in a conversation, can lead to a flare-up of symptoms that can last for days or even weeks. This post-exertional symptom exacerbation sets CFS apart from general fatigue or tiredness experienced by individuals without the condition.
Cognitive impairments are also common in individuals with CFS. They may have difficulty concentrating, processing information, or remembering things. This can make it challenging to perform tasks that require mental focus, such as work or school-related activities. Sleep disturbances are another prevalent symptom of CFS, with individuals experiencing insomnia, unrefreshing sleep, or disturbances in their sleep-wake cycle.
Individuals with CFS often report muscle and joint pain. This pain can be widespread and can vary in intensity from mild to severe. Headaches, often described as migraines, are also common, along with a sore throat and tender lymph nodes. These symptoms can fluctuate in severity and may be present for extended periods, weeks, months or years, contributing to the chronic nature of the condition.
Causes
The exact cause of CFS remains unknown, which makes it challenging to diagnose and treat effectively. Researchers believe that CFS may result from a combination of genetic, environmental, and immune system factors, as well as other underlying medical conditions. Some theories suggest that viral or bacterial infections, hormonal imbalances, or immune system dysfunction may play a role in the development of CFS. However, we need to conduct more research to fully comprehend the underlying causes.
It is important to note that the symptoms of CFS can vary widely from person to person, making diagnosis and management more difficult. Some individuals may experience primarily fatigue and cognitive impairments, while others may have more prominent pain or sleep disturbances. Additionally, symptoms can fluctuate over time and may be triggered by various factors, such as physical or emotional stress. Sound familiar? It should, our nervous systems still matter in relationship to CFS/ME.
Understanding the symptoms and potential causes of CFS is crucial for healthcare professionals to make an accurate diagnosis and develop an individualized treatment plan. It is essential for individuals with CFS to seek medical attention and work with healthcare providers who are knowledgeable about the condition to receive the appropriate support and guidance for managing their symptoms.
Diagnosing
Diagnosing chronic fatigue syndrome (CFS) can be a challenging and complex process. This is because there is no specific test or biomarker that definitively identifies CFS.
The criteria used for diagnosis may vary slightly depending on the healthcare professional and the guidelines they follow. The most widely accepted diagnostic criteria for CFS are the “International Consensus Criteria“. Or the “Canadian Consensus Criteria,” which outline specific symptoms and duration requirements for a CFS diagnosis.
The first step in diagnosing CFS is a thorough evaluation of the patient’s medical history and symptoms. Healthcare professionals will ask about the duration and nature of fatigue. The presence of other symptoms such as post-exertional malaise, cognitive impairments, and sleep disturbances. It is important for patients to provide as much detail as possible to help get a comprehensive understanding of their symptoms.
A physical examination may also be conducted to rule out other possible causes for the fatigue and related symptoms. This can involve checking for signs of other medical conditions, such as infections, autoimmune disorders, or hormonal imbalances. Additionally, certain physical findings, such as tender lymph nodes or muscle tenderness, may be indicative of CFS. When in doubt about what’s happening, ask! You are making a plan with your Health care professionals
Laboratory tests are commonly performed to exclude other potential causes for the symptoms. These tests may include:
- complete blood count (CBC)
- thyroid function tests
- liver function tests
- tests for infectious diseases such as Epstein-Barr virus or Lyme disease.
- While these tests may not provide a definitive diagnosis of CFS, they can help identify any other underlying medical conditions that may be contributing to the symptoms.
Please note that diagnosing CFS requires clinical judgment and excluding other possible causes for the symptoms.
Treatment Options
Medical treatment options for chronic fatigue syndrome (CFS) focus on managing the symptoms and improving quality of life. Healthcare professionals can recommend various strategies and interventions to help individuals cope with the challenges of the condition.One of the primary goals of medical treatment is symptom management. This isn’t a bad thing. The goal is to get you to live your best life possible while bigger answers are researched.
Medications
This can involve the use of medications to address specific symptoms such as pain, sleep disturbances, or cognitive impairments. For example, doctors may prescribe analgesics or nonsteroidal anti-inflammatory drugs (NSAIDs) to help manage muscle and joint pain. Sleep aids or medications that promote better sleep may be recommended to address sleep disturbances. Cognitive enhancers or medications that improve alertness and concentration may be prescribed to manage cognitive impairments. Give it a chance before you just say no. Medication for this has changed my quality of life drastically.
Coping Mechanisms:
In addition to medication, healthcare professionals may suggest various therapies to help individuals manage their symptoms. CBT can help individuals develop coping mechanisms, identify and challenge negative thought patterns, and improve their overall well-being.
Lifestyle changes
In addition to medical treatment options, self-care and lifestyle modifications play a crucial role in managing CFS/ME. This can include pacing activities, maintaining a regular sleep schedule, managing stress, and following a healthy diet. Working closely with healthcare professionals who specialize in CFS/ME is essential to developing an individualized treatment plan that addresses the specific needs and challenges of each individual.
Overall, It’s important to note that finding the right treatment approach for CFS often involves a trial-and-error process. What works for one individual may not work for another. It may take time to find the right combination of medications, therapies, and lifestyle changes that provide an improvement in quality of life. The treatment approach for CFS is multifaceted and may involve a combination of medications, therapies, lifestyle modifications, and support.
Graded Exercise ( a warning)
Let’s be frank, this phrase can be used in a way that is helpful or a way that is harmful. When CFS/ME wipes you out, the only way we ever get back to anything more is through graded exercise/ activity. Small bites. Doing a little more and seeing what happens. That is one way to look at grading. Breaking up tasks, and taking small bites to get to a larger task or more abilities. However, it can also be used in a way that is dangerous for those living with CFD/ME. Graded Exercise Therapy (GET) is often used in Physical Therapy by clinicians unfamiliar with CFS/ME. This is where being up to date on research while in the clinic is of the utmost importance.
From the conclusion of a 2020 review by Mark Vink, “GET not only fails to objectively improve function significantly or to restore the ability to work, but it is also detrimental to the health of≥50% of patients, according to a multitude of patient surveys. Consequently, it should not be recommended.”
NICE guidelines have also been adjusted to reflect the updated research.
Be aware of what your clinician is asking you to do. There is a difference between slowly increasing activity at your pace and in super small increments over sustained periods of time and a strict program of increasing activity. Know the facts and speak up.
Living Beyond Tired
One of the key strategies for managing CFS is pacing activities. This involves finding a balance between rest and activity to prevent overexertion and post-exertional symptom exacerbation. It’s important to listen to your body and avoid pushing yourself beyond your limits. Breaking tasks into smaller, more manageable chunks and taking frequent breaks can help conserve energy and prevent excessive fatigue.
Another important lifestyle change is maintaining a regular sleep schedule. Sleep disturbances are common in individuals with CFS, so establishing a consistent sleep routine can help improve the quality of sleep.
Managing stress is essential for individuals with CFS, as stress can worsen symptoms and exacerbate fatigue. Finding stress management techniques that work for you, such as deep breathing exercises, meditation, yoga, or engaging in hobbies and activities that bring you joy, can help reduce stress levels and improve overall well-being. It’s also important to establish boundaries and prioritize self-care to avoid overexertion and excessive stress.
Nutrition plays a crucial role in managing CFS symptoms. Eating a balanced diet that includes whole, nutrient-dense foods can provide the energy and nutrients needed to support overall health and well-being. Avoiding processed foods, sugary snacks, and caffeine can also help stabilize energy levels and prevent crashes.
Additionally, it can be beneficial to seek support from others who understand and can relate to the challenges of living with CFS. Connecting with support groups, either in-person or online, can provide a sense of community and offer valuable advice and coping strategies. It’s important to surround yourself with a strong support system that includes understanding friends, family, and healthcare professionals who can provide guidance and support.
Remember, coping with CFS is a personal journey, and what works for one person may not work for another. It’s essential to explore different coping strategies, therapies, and support resources to find the ones that work best for you. Be patient with yourself and celebrate the small victories along the way. With the right support and coping strategies in place, individuals with CFS can lead fulfilling and meaningful lives.
