Global Health Asia-Pacific May 2022 May 2022 - Page 52

Fibromyalgia

The plague of long-term fatigue and pain

Better research could untangle the causes of these chronic conditions that can wreak havoc on people ’ s lives , with women suffering disproportionately
Their root causes , however , are unknown , and it ’ s hard to find objective medical measures to identify them in the way elevated blood sugars can point to diabetes or positive tests can confirm COVID-19 infection .

Most people experience tiredness and pain as short-term symptoms of a main disease , say influenza or arthritis , that fade away when they recover . But for a growing number of people , fatigue and pain turn into chronic systemic conditions that often don ’ t seem directly related to specific health problems but have nonetheless a destructive impact on daily life .

People who meet the criteria for myalgic encephalomyelitis / chronic fatigue syndrome ( ME / CFS ), for instance , “ can become so ill that they can barely leave their house or have trouble getting out of bed ,” Dr Lucinda Bateman , an internal medicine specialist who has dedicated her career to the treatment of fatigue and pain , told Global Health Asia- Pacific .
Some cases of fibromyalgia , a similar condition characterised by recurring and long-lasting pain throughout the body , are as debilitating . “ If you have severe pain all the time , you cannot sleep , you cannot work , you cannot function as a parent or spouse ,” said Dr Eva Kosek , a professor of clinical pain research at Karolinska Institutet and Uppsala University in Sweden and a pain specialist . “ Compared to other pain patients , fibromyalgia patients have very little time when they are pain free .”
Despite their disabling potential , ME / CFS and fibromyalgia are poorly understood medical concepts . Doctors still disagree over the best way to define them and mostly make sense of them by simply listing their associated health problems , which often overlap .
“ Both of these conditions are really a description of symptom presentation , and the term ME / CFS does not imply cause , it doesn ’ t tell you what caused it , and it ’ s not mutually exclusive of something like fibromyalgia ,” said Dr Bateman .
The hallmark of ME / CFS are profound fatigue and post-exertional malaise , or worsening of the illness from any type of physical , mental , or emotional effort . These are accompanied by cognitive and sleep difficulties as well as orthostatic intolerance , which causes symptoms like dizziness when standing up from a reclining position . All these must be moderate to severe and present more than 50 percent of the time and for at least six months to make a diagnosis . Pain is another common symptom .
In contrast , fibromyalgia is mostly defined by chronic widespread pain that can affect every part of the body and tends to move around . “ For example , you can have a very severe pain in your shoulder one day and the next week it ’ s your hip or lower back ,” explained Dr Kosek , adding that new diagnostic criteria also included comorbidities like stomach cramps and cognitive dysfunction .
Their root causes , however , are unknown , and it ’ s hard to find objective medical measures to identify them in the way elevated blood sugars can point to diabetes or positive tests can confirm COVID-19 infection .
This elusiveness speaks to why the two conditions have long struggled to gain traction as legitimate medical diagnoses , with many patients being dismissed by doctors as hypochondriacs or misdiagnosed with psychological problems like anxiety and depression , which are also diagnosed based on symptom presentation as there are no medical tests to confirm them .
Dr Bateman and Professor Kosek have witnessed these gaps in ME / CFS and fibromyalgia care , respectively , since at least the 1990s and felt motivated to help these patients because most physicians didn ’ t have any clue of how to deal with them .
“ I became a fatigue specialist so that I could focus on this large number of patients that were not having their needs met very well by the regular medical community ,” said Dr Bateman .
At that time , research into the two conditions was in its infancy , and many doctors didn ’ t believe in their existence . “ Initially , I was interested in patients with fibromyalgia because they were a misunderstood group who had very consistent stories of muscular pain in the whole body , and I got the conviction that this was a real problem worthwhile exploring ,” said Dr Kosek .
Since then , however , ME / CFS and fibromyalgia have been gaining more legitimacy in the medical community despite the uncertainties around their causes and mechanisms of action .
For instance , some evidence suggests many ME / CFS cases could be triggered by an infection . “ We think it ’ s a common infection like the Epstein-Barr virus , but we seldom make an early diagnosis and so our ability to know what triggered the infection is lost in time ,” said Dr Bateman .
The theory is that common infections that create
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