- Chronic Fatigue Syndrome (CFS) is not well understood and therefore difficult to diagnose.
- About a quarter of people with CFS are unable to leave the house because of severe pain and fatigue.
- The cause of CFS is unclear and there is no cure, but lifestyle changes can help manage symptoms.
Chronic Fatigue Syndrome (CFS) is a serious illness characterized by severe fatigue that does not improve with rest or sleep.
The disease, also known as myalgic encephalomyelitis (ME), is not well understood, but doctors believe it affects both the neurological and immune systems and is often triggered by an apparently unrelated bacterial or viral infection, making diagnosis difficult.
There are currently no FDA-approved treatments for CFS, but there are some protocols that can improve quality of life, says Emily Taylor, vice president of advocacy and engagement at Solve ME/CFS.
Read on to learn more about CFS and find out if you may have the condition.
Many people with CFS are unable to perform everyday activities such as working or cooking due to severe fatigue, and about 25% are housebound. This leads to a low quality of life.
Additionally, people with CFS experience symptoms beyond fatigue, says Medhat Mikhael, MD, pain management specialist and medical director of the nonsurgical program at MemorialCare Orange Coast Medical Center’s Spine Health Center.
The following symptoms may come and go or get worse over time:
Research suggests that as many as 2.5 million Americans could have CFS, but that fewer than 10% of people have been diagnosed with CFS.
This is at least partly because there is no test for CFS and these symptoms can be confused with other autoimmune and nervous system disorders or mental illnesses, including:
Additionally, doctors are often unfamiliar with CFS, making it difficult for patients to receive a diagnosis, says Jacob Teitelbaum, MD, an internist at Vitality101.
“CFS is no more of a mental illness than cancer,” he says. “Unfortunately, over the last century, some doctors have had a habit of telling people, ‘I don’t know what’s wrong with you she are crazy.'”
Teitelbaum adds that this “can delay treatment and cause deep distress”.
Because CFS is underdiagnosed, it is difficult to know who is most affected. Some research shows that the condition is most common between the ages of 40 and 60, while other research shows that it is more common between the ages of 20 and 40.
CFS is most commonly diagnosed in white people and is four times more likely to be diagnosed in women than men. Many people diagnosed with CFS have recently had an infection, and infections are being investigated as a possible cause. Another risk factor is childhood trauma.
While no definitive cause or mechanism of CFS is understood, Teitelbaum says research suggests people with the disease may have “trimmed a circuit breaker” in the hypothalamus, so to speak. The area of the brain that produces hormones that control vital bodily functions, from heart rate and hunger to sex drive and sleep.
dealing with symptoms
There is no cure for CFS, but some people manage their symptoms through lifestyle changes, medications, and research-backed protocols.
Be prepared: Treating CFS often involves trial and error. Doctors typically treat the symptoms that cause the biggest disruption in a person’s life, including:
discomfort after exertion
Post-Exertional Malaise (PEM) occurs when symptoms worsen with even minimal physical or mental exertion.
To combat PEM, doctors recommend pacing, an approach that allows a person to carefully dose their exertion throughout the day to help control symptoms.
You can do this with the help of your doctor, who can help you track patterns between specific stresses and symptoms. While the approach is imperfect in everyday life, it helps many people long-term, Taylor says.
Sleep disturbances are common with CFS. The first step in treating problems falling asleep or staying asleep is to establish good sleep hygiene, e.g. B. Going to bed at the same time every day and avoiding screens before and in bed.
Treatments for insomnia, including cognitive behavioral therapy, short-term sleep aids, and
can also help. Treating other symptoms, such as pain, can help people fall asleep and stay asleep.
People with CFS often experience widespread and generalized pain throughout the body, especially in the joints.
Doctors work with people with CFS to manage aches and pains with mild exercise, such as yoga or stretching, and complementary medicine, such as acupuncture or massage. Over-the-counter pain relievers like aspirin or ibuprofen can also help.
If pain persists, your doctor may recommend working with a pain management specialist who can help develop a pain management plan that includes lifestyle changes, behavioral therapy, and possible prescriptions.
Stress, Anxiety and Mental Health
People with CFS are more likely than the general population to suffer from mood disorders, including anxiety and depression
Researchers are still investigating whether a biological mechanism is at play or whether the daily challenges of living with CFS and the inability to engage in normal activities lead to an increased risk of depression.
Treatment for mental illness associated with CFS includes mindfulness and relaxation therapies, as well as medications to treat depression or anxiety.
People with CFS particularly benefit from a healthy lifestyle, including a balanced diet and psychological support.
Teitelbaum recommends the SHINE protocol he developed to treat people with CFS and fibromyalgia. It is a comprehensive package of lifestyle modifications and medical interventions that address:
- Sleep: Protocol recommends getting 8-9 hours of sleep and using sleep aids if necessary to achieve this.
- hormones: The protocol aims to stabilize hormone levels through drugs that target the thyroid and adrenal glands.
- infections: The protocol identifies, fights and prevents infections ranging from yeast infections to viral diseases.
- nutrition: The protocol calls for a balanced diet plan to address nutritional deficiencies.
- The exercise: After 10 weeks of using the program, patients are asked to increase their physical activity slowly and under medical supervision.
Chronic Fatigue Syndrome is a condition that causes extreme fatigue, mental fog, and general aches and pains throughout the body.
Up to 90% of cases go undiagnosed, and researchers are working to better understand the condition.
If you think you may have CFS or have been recently diagnosed, finding a doctor who is familiar with CFS can improve your outcome, Teitelbaum says.
“It’s a complex disease and requires a doctor who is knowledgeable about this disease,” he says.