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Living with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis - My Journey and Insights

  • Mar 27
  • 6 min read

Chronic Fatigue Syndrome (CFS) is one of those conditions that many have heard of but few truly understand—myself included, until I experienced it firsthand. Before 2022, I was active, attending multiple Zumba classes a week and effortlessly walking 5km. Then, after contracting COVID-19, everything changed. Simple tasks became exhausting, my muscles ached as if I had run a marathon, and I found myself struggling to even lift a mug. It wasn’t just fatigue; it was a complete shift in how my body functioned. My journey to understanding and managing CFS has been long, frustrating, and eye-opening. If you or a loved one are searching for answers, I hope that sharing my experience helps shed light on this often-misunderstood condition.

I experienced my first major crash shortly after getting COVID-19 in 2022. For nearly two months, I was bedridden, unable to summon the energy for even the simplest tasks, like walking to the kitchen to boil a kettle. The shock of a panic attack, completely unprompted, compounded the physical distress. Fortunately, my professional background and supportive colleagues allowed me to quickly implement strategies to manage the anxiety. My second crash came at the beginning of 2024—though the fatigue was less intense, my muscles felt as if I had just run a marathon. Walking was nearly impossible due to the extreme soreness, and for a month, I could only see two clients per week while spending the rest of my time recovering. For someone who had once thrived on movement and exercise, this was a shocking and deeply unsettling change.


The most recent crash happened just before Christmas last year. Along with muscle cramps and fatigue, I experienced a day where I couldn’t even lift a mug due to the excruciating pain that caused in my arm. Though I had heard of Chronic Fatigue Syndrome (CFS) before and had clients suffering from it, I had never realized the extent of the symptoms involved. Like many others, I assumed that people suffering with CFS were "just" constantly tired. I could not understand why I was having all of these other symptoms. Looking back, I feel abashed by my ignorance. Today, I hope to reach even one person searching for answers or a loved one trying to understand.


Identifying My Symptoms

I am incredibly grateful for my Eductor biofeedback machine, which I purchased in March last year. While not a diagnostic tool, it has provided valuable awareness of what my subconscious needs. When I ran it in December last year, it suggested stress training for Chronic Fatigue Syndrome. This prompted me to research CFS symptoms more extensively, and I was shocked to see how many I recognized in myself. Here are a list of possible symptoms for CFS:


Primary Symptoms:

  • Extreme fatigue lasting at least six months, worsening with exertion (physical, mental, or emotional)

  • Post-exertional malaise (PEM) – worsening of symptoms after activity

  • Unrefreshing sleep – feeling exhausted even after a full night's rest

  • Cognitive difficulties ("brain fog") – trouble with memory, concentration, and processing information


Additional Symptoms:

  • Muscle and joint pain without swelling or redness

  • Frequent headaches of a new type or intensity

  • Sore throat without an infection

  • Swollen or tender lymph nodes (typically in the neck or armpits)

  • Dizziness or lightheadedness (especially when standing up, known as orthostatic intolerance)

  • Heart palpitations or irregular heartbeat

  • Sensitivity to light, noise, and smells

  • Digestive issues (nausea, bloating, irritable bowel syndrome)

  • Chills and night sweats

  • Tingling or numbness in extremities

  • Shortness of breath or difficulty breathing

  • Increased sensitivity to temperature changes


Since symptoms vary from person to person, not everyone experiences all of them. However, fatigue, PEM, unrefreshing sleep, and cognitive dysfunction are the hallmarks of the condition.


The Challenge of Being Understood

CFS symptoms can come on overnight and disappear just as suddenly. On good days, even close friends and family may not realize anything is wrong unless you tell them. On bad days, those who don’t live with you have no way of seeing the struggle. I often heard, “You don’t look like you’ve been sick.”


I eventually learned that simply saying, "I have chronic fatigue" wasn’t enough. People would ask later, "Are you feeling less tired?" – not realizing that "tired" is a good day. If you are experiencing CFS, I encourage you to be open with those close to you. Explain the full range of symptoms you deal with so they can offer the support you need.


Medical Testing & Live Blood Analysis

After the holidays, I made an appointment with my doctor to ensure I wasn’t just self-diagnosing. I researched diagnostic methods and found that diagnosing ME/CFS is a complex process that relies on clinical evaluation and ruling out other conditions through medical tests.


My doctor, who is wonderfully supportive, conducted thorough blood work. Everything came back within range. Seeking further insight, I visited a nutritionist who performed a live blood analysis.


Live blood analysis isn’t recognized as a diagnostic tool for CFS in mainstream medicine, but I found the results fascinating. My red blood cells were stacked on top of each other instead of being evenly spread out. After further research, I found this Guardian article discussing how microclots might contribute to Long COVID and fatigue. Seeing scientific evidence backing my experience made me feel a little saner, and less alone.


My live blood analysis February 2025


Managing and Preventing Crashes

Now, my focus is on managing my condition and preventing future crashes. I always start by exploring the emotional and mental triggers behind illness. Reflecting on my clients with CFS, I noticed a common theme: self-criticism and a constant drive to do better. While striving for improvement is healthy, those with CFS often struggle to believe their efforts are ever enough.


Looking inward, I recognized that I rarely allow myself a true break. Even during holidays, relaxation or meditation, my mind is preoccupied with how to enhance my work or help my clients. My advice to anyone struggling with this is to be mindful when your mind wanders into self-criticism, or extreme planning. Remind yourself that you deserve rest without justification. For mental clarity, I have found breathwork, Reiki, and meditation incredibly helpful.


Another key finding from my live blood analysis was leaky gut syndrome. My nutritionist recommended a low-carb diet, which has significantly improved my health. I did live blood analysis on February 19 and again on March 19, 2025, and the difference was substantial.

I also heard from another person with post-COVID CFS who saw great improvement after working with a naturopath to heal his gut. This reinforces the importance of gut health in managing CFS symptoms.


I continue to use my Eductor biofeedback machine for stress reduction, relaxation training, and muscle re-education.


With these changes, I’m starting to feel better. I even managed some light strength training this week. I’m making changes gradually to track what helps. This month, I will introduce two new supplements that have shown promise for CFS. If they prove beneficial, I’ll share them in an update.


My live blood analysis March 2025


Final Thoughts

I want to stress that I am not a doctor, and this blog is not intended as medical advice. Everything shared here is based on my personal experience. Please consult a healthcare professional before making any changes to your health routine.


To anyone experiencing unexplained fatigue and related symptoms, know that you are not alone. CFS is a complex and often misunderstood condition, but with the right knowledge and support, it is possible to manage and improve your quality of life.


If my story resonates with you or helps in any way, please share it with someone who might need it. Let’s continue learning and growing together.


My Support Team

If you are looking for some support, here are a list of some of the professionals, and some of the websites that helped me:

 
 
 

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