Always tired? It could be Chronic Fatigue Syndrome. Dr Serena In, Clinical Psychologist and Head of the Department at the School of Medicine, IMU University, shares insights into this lesser-known condition and offers guidance on finding help.
Understanding Chronic Fatigue Syndrome: Symptoms, diagnosis, and living with the condition
Thoughts like “Why am I so tired even though I had a full night’s sleep?”, “Everybody thinks I’m lazy, but I’m just exhausted all the time.”, and “No amount of coffee seems to help; how am I supposed to work?” are constant companions for people with Chronic Fatigue Syndrome (CFS), a debilitating condition that defies conventional diagnostic efforts. There are no specific tests or symptoms that definitively identify the condition, leaving CFS shrouded in mystery and those affected often left to figure things out on their own.
International ME/CFS Awareness Day is celebrated annually to raise awareness of this condition, highlighting its impact on day-to-day life and empowering individuals to seek help.
“There is little data on CFS in Malaysia, not because it does not exist here, but because there is low awareness among the general public. Consequently, few people know to seek treatment for it, leading to under-reporting and poor understanding,” said Dr Serena In, Clinical Psychologist and Head of Department at the School of Medicine, IMU University.
If you or someone you know is suffering from prolonged and unexplained fatigue that does not improve with rest, here’s what you need to know.
Medically known as Myalgic Encephalomyelitis (ME), experts are uncertain about what causes CFS. It can sometimes develop after viral infections such as COVID-19, although it is not specifically linked to any particular infection. Other related factors — though not necessarily causal — include inflammatory diseases like arthritis, psychological conditions such as depression, and hormonal changes such as menopause.
Symptoms may come and go and vary greatly from person to person. Most patients report symptoms such as:
- Fatigue that is not relieved with rest or sleep
- Difficulty concentrating
- Muscle weakness
- Hypersensitivity to smells, chemicals, light or noise
- Digestive problems like irritable bowel syndrome
- Joint and muscle pain without exertion, swelling or redness
The long road to diagnosis
CFS can only be diagnosed based on a combination of symptoms, alongside a series of tests to rule out other possible causes.
However, before concluding that CFS is the cause, Dr Serena cautions, “Listen to your body and what it is trying to tell you. Address the basics first — get sufficient rest and eat a balanced diet. If you address these basics correctly, you should feel better in a few weeks. However, if you have tried this without relief, then you may need medical advice.”
A family physician can help identify and rule out other possible health issues, ranging from autoimmune conditions like lupus to burnout, depression, or other health problems. This process may involve blood tests, keeping a journal to track symptoms, and weeks or even months of observation. If necessary, your doctor may also refer you to one or more specialists for further insights.
Living with CFS
“CFS is different for everyone. It is a multifaceted condition, and while its severity can vary from person to person, experiencing constant fatigue, pain, or feeling unwell on a daily basis can be debilitating. Some individuals have also reported not feeling well understood by their physicians, employers, or loved ones when describing their symptoms. This can be particularly challenging for those who are accustomed to being active and social, as they may now need to scale back on responsibilities, physical activities, social gatherings, and more,” said Dr Serena.
There is no specific treatment or cure for CFS, though pain management can play an important role in relieving symptoms, alongside lifestyle adjustments. Additionally, Dr Serena suggests seeing a clinical psychologist or counsellor for support in processing the significant changes to your life.
“For some, adjusting to life with CFS can feel like grieving the loss of the healthier version of yourself that you used to be. Your therapist can also help address your fears for the future, as many patients may experience a sense of hopelessness. It is possible to work through acceptance and still lead a meaningful and fulfilling life after learning to effectively manage these symptoms on a daily basis,” she explained.
However, she emphasised the importance of not giving up hope.
“CFS is challenging to diagnose, and there is no quick fix, but it is crucial to persist in your efforts to find answers. Engaging a supportive team of medical specialists to manage your symptoms, along with a therapist to help navigate the unpredictable challenges, could greatly enhance your quality of life.”
