“Why am I so tired even though I had a full night’s sleep?” “Everybody thinks I’m being lazy, but I’m just exhausted all the time.” “No amount of coffee seems to help – how am I supposed to work?”
Thoughts like these are constant for people with chronic fatigue syndrome (CFS), a debilitating condition that defies conventional diagnostic efforts. With no specific tests or symptoms that definitively identify the condition, CFS remains shrouded in mystery, often leaving those affected to figure things out on their own.
“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,” said Dr Serena In, clinical psychologist and department head of the School of Medicine at IMU University.
“Because of this, few people know to seek treatment for it, leading to it being under-reported and poorly understood.”
Possible signs of CFS
Medically known as myalgic encephalomyelitis, experts are uncertain what causes CFS. It can sometimes develop after viral infections including Covid-19, although it is not associated with any specific infection.
Other related factors – though not necessarily causal in nature – include inflammatory diseases such as 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 the following:
- 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; and
- 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 jumping to CFS as an answer, In cautioned: “Listen to your body and what it is trying to tell you. Address the basic needs first – get sufficient rest and eat a balanced diet. If you get the basics right, you should feel better in a few weeks.
“However, if you have tried this with no relief, then you may need medical advice.”
A family physician can help to identify and rule out other possible health problems, from autoimmune conditions like lupus to burnout or depression. This might involve blood tests, journal-keeping to track symptoms, and weeks or even months of observation.
Where relevant, your doctor may also refer you to one or more specialists for further insights.
Living with CFS
“CFS is different for everyone,” In noted. “It is a multifaceted condition, and while its severity can vary from person to person, being constantly fatigued, in pain or feeling unwell on a daily basis can be debilitating.
“Some have also reported not being well understood by their own physician, employers, or loved ones when describing their symptoms. This can be particularly difficult for those who are used to being active and social, who are now forced to cut back on certain responsibilities, physical activities, or social gatherings.”
While there is no specific treatment or cure for CFS, pain management can play an important role in relieving symptoms, alongside lifestyle adjustments. Additionally, In suggests seeing a clinical psychologist or counsellor for support.
“For some, the process of adjusting to life with CFS can feel like grief, as it may mean losing the healthier version of yourself that you used to be. Your therapist can help address your fears for the future, as many patients may also feel a sense of hopelessness.
“It is possible to work through acceptance and still lead a meaningful and fulfilling life after having learnt to effectively manage these symptoms,” In said.
Stressing on the importance of not giving up, she concluded: “Persist in your efforts to find an answer. Engaging a supportive team of a medical specialist to manage your symptoms, along with a therapist to process the unpredictable challenges, can greatly enhance your quality of life.”