Each morning when I wake with heavy eyes and that familiar
radius of pain, I repeat a phrase that has become like second
nature: There are two kinds of people in this world
– those who wade through the muck and those who wallow in
Each morning when I wake with heavy eyes and that familiar radius of pain, I repeat a phrase that has become like second nature: There are two kinds of people in this world – those who wade through the muck and those who wallow in it.
Some days are better than others, I’ll admit. I may have an exceptionally productive day here or there, rising to the levels of my most capable self.
Then there are the days I feel like I’m sinking, barely able to move off the mattress and hardly capable of functioning. Most of my time is spent in the habit of merely existing.
I blame it on a poor night sleep, but really Chronic Fatigue Syndrome, a mysterious illness whose origin is still unknown, has been eating at my life for the last four years.
The illness, which first gained widespread notice in the 1980s, was jokingly called the “yuppie flu” because CFS was diagnosed most commonly in white middle-class women in their 30s and 40s, according to the National Institute of Allergy and Infectious Diseases. Sufferers weren’t laughing.
The disease causes debilitating fatigue, muscle pain and “mind fog”-type cognitive issues, a set of symptoms that has perplexed doctors since the 1800s it turns out.
More than 140 years ago, Dr. George Beard named the problem “neurasthenia” because he thought the symptoms were associated a nervous disorder, according to NIAID.
In 1904, Dr. Ralph Stockman, an Edinburgh pathologist, described something extremely close to if not identical with CFS when he noted patients with “aching, stiffness, a readiness to feel muscular fatigue, interference with free muscular movement, and very often a want of energy and vigour,” according to Kelley’s Textbook of Rheumatology, seventh edition.
When the symptom set resurfaced as an issue in the 1980s, researchers named it “chronic EBV,” believing it was caused by the Epstein-Barr virus. It wasn’t.
The difficulty in pinpointing CFS’s cause led to widespread dismissal from the scientific community at first, but in recent years it has found a growing acceptance in medical circles.
“There is still a segment of the medical community, legal community, and the employer community who feel it’s not a real condition,” said Gilroy Rheumatologist Dr. Gerlie Papillon, “but not most Rheumatologists.”
Some 500,000 people are conservatively estimated to have been diagnosed with the disease according to NIAID, but since the diagnosis is reductive – made indirectly by eliminating a variety of other options – it is unclear if whether people actually suffer from CFS or whether they’re simply exhibiting symptoms similar to the disease.
Most often it seems to be triggered by stress or a viral infection – I developed symptoms after an extended bout with mononucleosis. United States soldiers have a much higher instance of stress-related CFS during war-time , too, according to the Kelly’s text – but sometimes it comes on for no apparent reason.
And while most who are diagnosed with the disease are still middle-aged white females, according to the U.S. Centers for Disease Control, there is a suspicion that CFS is widely underdiagnosed among minorities and men due to inadequate medical access and the lack of wanting to admit the problem and get help.
Also, instead of seeking out help from specialists, an increasing number of patients are being treated through their primary care providers, said Papillon, making statistics more difficult to compile.
Researchers in the United States and Belgium are working on an experimental drug called Ampligen, produced by Hemispherx Biopharma that could bring new life to sufferers.
According to the Hemispherx researchers, people with CFS may have an anomaly in antiviral material within their immune systems. A compromised RNaseL pathway, the gateway to the body’s antiviral defense system, may be symptomatic of extreme CFS cases, but professionals urge hopeful candidates to take a wait-and-see approach.
“Conventional medicine hasn’t cured the problem,” said Papillon. “Some people truly get over it and some have many of their symptoms go away over time, but most people will have it for good. They get better because they learn to cope better.”
Hence my motto, and my choice, to wade through the muck. If you, too, have been diagnosed with CFS or fibromyalgia, consider attending a support group. Just knowing that there are other people out there like you may help, and others may be able to turn you toward promising treatments.
For those who have not been diagnosed, it may be helpful to schedule an appointment with your doctor if you have experienced persistent headaches, sleep disruptions, swollen glands, abdominal pain, nausea or severe mood changes over the past four to six months.
The Fibromyalgia Support Group in Gilroy meets in the St. Louise Regional Hospital Boardroom on the first Monday of each month, beginning at 7pm. Call Sandy at (408) 847-8563 for more information.