In our busy lives there’s little room for extreme exhaustion; however, for those diagnosed with chronic fatigue syndrome that is their daily reality.
Chronic fatigue syndrome, also referred to as myalgic encephalomyelitis, is a little understood and complicated illness. Its hallmark symptom is extreme and persistent exhaustion. The severity of the symptoms can vary from day-to-day, completely disrupting a person’s personal and work life and putting strain on their relationships and ability to make or keep plans.
“By definition, chronic fatigue syndrome symptoms must be ongoing for at least six months,” says Dr. Srivani Sridhar, a family physician with UW Health Northern in Rockford, Illinois. “It can last several years or a lifetime without treatment. Symptoms can also wax and wane over months and years.”
[READ: Adrenal Fatigue: Is It Real?]
Chronic Fatigue Syndrome Symptoms
The most common symptoms of chronic fatigue syndrome include:
— Challenges with memory, concentration and focus.
— Dizziness created from the movement of lying down to either sitting or standing which improves when the person lies back down.
— Enlarged and possibly tender lymph nodes in the neck or armpits.
— Joint pain without swelling or redness.
— Persistent or extreme fatigue that is not helped by rest or sleep and affects someone’s ability to carry out day-to-day activities.
— Post-exertional malaise which is the worsening of symptoms following either physical or mental effort.
— Unexplained muscle weakness.
According to a report from the National Academy of Medicine, formerly called Institute of Medicine, an estimated 836,000 to 2.5 million Americans suffer from chronic fatigue syndrome, and at least one-quarter of patients are bed- or house-bound at some point in their illness.
“Chronic fatigue syndrome strikes people of all ages, including children, across racial, ethnic and socioeconomic groups. It is diagnosed two to four times more often in women,” says Dr. Avi Nath, clinical director at the National Institutes of Health’s National Institute of Neurological Disorders and Stroke in Bethesda, Maryland.
Where Does Chronic Fatigue Syndrome Come From?
Researchers have yet to definitively determine what causes chronic fatigue syndrome, but potential culprits may include:
— Infections. Some people develop chronic fatigue syndrome after an illness. One in 10 people who have contracted Epstein-Barr virus, Ross River virus or Coxiella burnetii will develop symptoms that meet the criteria for chronic fatigue syndrome, according to the Centers for Disease Control and Prevention.
— Genetics. Researchers have found that in some cases a person has a higher chance of contracting chronic fatigue syndrome if other family members have had it. No gene has yet been definitively proven to play a role, however.
— Hormones. The hypothalamus is a center in the brain that produces hormones that maintain body’s internal balance, called homeostasis. Fluctuations in hormones can be caused by sleep disturbances, infections, toxins, physical or mental stress, poor diet and autoimmune conditions. The body’s way to protect itself is to decrease energy demands on the body, resulting in fatigue.
— Immune system changes. Immune systems of those with chronic fatigue syndrome appear slightly impaired, but it hasn’t been determined if that plays a role in contracting the disease.
— Mitochondria. Present in almost every cell in the body, mitochondria are the “power houses” of the cells that generate energy. When they are working inefficiently or being overused, it can lead to fatigue.
— Physical or emotional stress. Some people report that shortly before their symptoms began, they experienced significant physical or emotional stress.
Diagnosing Chronic Fatigue Syndrome
CDC research showed that less than 20% of American chronic fatigue syndrome patients have been diagnosed. Diagnosing chronic fatigue syndrome remains a challenge because the symptoms overlap with many other diseases and because it’s a diagnosis that comes only after other illnesses are ruled out.
“Most often doctors are trying to exclude other underlying diseases such as diabetes, cancer, autoimmune disorders or other brain diseases. Testing is targeted to the symptoms that they present with. There is no standard battery of tests,” Nath says.
The CDC criteria for diagnosing chronic fatigue syndrome includes severe fatigue that lasts longer than six months, as well as experiencing four out of the following symptoms:
— Headaches with new patterns or severity.
— Joint pain without swelling or redness.
— Muscle pain.
— Post-exertional malaise that lasts longer than 24 hours.
— Significant impairment in short-term memory or concentration.
— Sore throat.
— Tender lymph nodes.
— Unrefreshing sleep.
A diagnosis of chronic fatigue syndrome is one of exclusion and therefore requires a thorough medical workup by your doctor. “Oftentimes, people are referred to specialist doctors to rule out other illnesses,” says Dr. Houman Danesh, director of integrative pain management at the Icahn School of Medicine at Mount Sinai in New York City.
According to Danesh, the most common illnesses that chronic fatigue syndrome is mistaken for are:
— POTS, or postural orthostatic tachycardia syndrome, which goes undiagnosed in a lot in these cases.
— Lyme disease.
— Addison’s disease.
— Polymyalgia rheumatica.
— Sleep apnea.
— Parkinson’s disease.
— Multiple sclerosis.
— Rheumatoid arthritis.
Treatment for Chronic Fatigue Syndrome
Currently there is no cure for chronic fatigue syndrome. Current treatment focuses on symptom relief. “The most troublesome or disabling symptoms are typically addressed first,” Nath says.
Common ways to manage chronic fatigue syndrome is to schedule activities that take into account energy levels that can help relieve some stress that the illness puts on people.
According to the American Academy of Family Physicians, cognitive behavior therapy and exercise that gradually increases over time have been shown to moderately improve fatigue levels, help patients with their day-to-day activities and manage anxiety and post-exertional malaise.
Depending on the person, chronic fatigue syndrome can last anywhere from six months to a few years, making it important to work with a health care team to find effective ways to find symptom relief and develop strategies that improve quality of life.
“Take your health in your own hands and be proactive in finding an integrative or functional medicine provider that can guide you through a multi-pronged approach to support your body while it recovers and heals, eventually eliminating your symptoms,” Sridhar says.
Preparing for Your Doctor Visit
Before seeing a doctor prepare a brief history that summarizes your health. Try to include:
— A list of your symptoms starting with the ones that are most impactful to you.
— When your symptoms started and if they began shortly after an illness or impactful event.
— What makes your symptoms worse.
— How the symptoms affect your day-to-day activities.
— The frequency of symptoms.
“In helping your doctor to make an accurate diagnosis make sure you rule out POTS by taking your pulse and blood pressure laying down, sitting and standing. Wait two minutes after changing positions. Take these recordings to your doctor who may order further tests,” Danesh says. Your doctor also may repeat the tests in office.
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