Chronic Fatigue Syndrome (CFS) is a complex and often misunderstood condition characterized by extreme fatigue that doesn't improve with rest. While it used to be relatively rare, a recent report from the Centers for Disease Control and Prevention (CDC) shows approximately 1.3% of adults in the United States have chronic fatigue syndrome. For context, that’s about 4.3 million Americans, based on the current U.S. population of 333 million.
But what exactly is CFS, what do the symptoms look like, and what do you do if you think you may be one of the 4.3 million Americans affected?
What is Chronic Fatigue Syndrome?
As we mentioned, CFS is characterized by persistent fatigue that lasts at least six months. It significantly interferes with daily activities and doesn’t improve with rest. The fatigue is often accompanied by other symptoms like pain, impaired memory or concentration, and sleep that doesn’t result in you feeling rested or refreshed.
CFS may get worse after any activity, whether it’s physical or mental. People with CFS may not look ill, however:
- People with CFS are not able to function the same way they did before they became ill.
- CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
- CFS often makes it hard to keep a job, go to school, and take part in family and social life.
- CFS can last for years and sometimes leads to serious disability.
- At least one in four CFS patients is bed- or house-bound for long periods during their illness.
According to the CDC, there are three primary symptoms are required for diagnosis. These are also referred to as the “core” symptoms:
- Greatly lowered ability to do activities that were usual before the illness. People with CFS have fatigue which is very different from just being tired.
- Worsening of CFS symptoms after physical or mental activity that would not have caused a problem before the illness. People with CFS often describe this experience as a “crash,” “relapse,” or “collapse.” During this time, symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. It may take days, weeks, or longer to recover from a crash.
- Sleep problems. People with CFS may not feel better or less tired, even after a full night of sleep. Some people with CFS may have problems falling asleep or staying asleep.
Apart from the core symptoms, to diagnose this condition, you need to have at least one of these two additional symptoms:
- Trouble with thinking and memory: Many folks with this illness find it hard to think quickly, remember things, and focus on details. They often describe it as "brain fog" because they feel like their thoughts are stuck and unclear.
- Symptoms get worse when sitting or standing up: When people with this illness stand or sit up, they might feel dizzy, lightheaded, weak, or even like they might faint. Sometimes, their vision can blur or they see spots.
CFS can affect anyone. Although it's more common in people aged 50 to 69, it can impact kids, teens, and adults of any age. Among adults, women tend to experience it more than men. Also, it's noticed more in white individuals compared to other racial or ethnic groups. However, many people with CFS haven't been diagnosed, especially those from different racial or ethnic backgrounds.
How is CFS Diagnosed?
Due to the nature of CFS, it can be a bit difficult to diagnose. First, your doctor will ask about your medical history and family medical history, do a thorough physical and mental status examination, and order blood, urine or other tests.
Questions your doctor may ask you include:
- What are you able to do now? How does it compare to what you were able to do before?
- How long have you felt this way?
- Do you feel better after sleeping or resting?
- What makes you feel worse? What helps you feel better?
- What happens when you try to push to do activities that are now hard for you?
- Are you able to think as clearly as you did before becoming ill?
- What symptoms keep you from doing what you need or want to do?
You may want to keep an activity journal prior to your appointment to help you remember important details.
Your doctor might also refer you to a specialist, like a neurologist, rheumatologist, or a sleep specialist, to check for other conditions that can cause similar symptoms.
These specialists might find other conditions that could be treated. It’s important to know that you can have other conditions and still have CFS. However, getting treatment for these conditions might help you feel better.
Scientists haven't figured out the exact cause of myalgic chronic fatigue syndrome yet. It could be that CFS comes from various causes, which means different patients might have the illness for different reasons (details below). However, researchers believe there may be a link between COVID-19 infection and CFS since an infection is a common precursor that seems to trigger CFS.
“All the symptoms that are seen in CFS are commonly seen in Long COVID,” says Surendra Barshikar, M.D., an Associate Professor and Vice Chair of Clinical Operations for the Department of Physical Medicine and Rehabilitation (PM&R) at UT Southwestern Medical Center. Barshikar is also the director of the COVID Recover Clinic at UT Southwestern. “That’s why it’s important to have a detailed history and time sequence of events. We can assume that Long COVID is causing the fatigue if other causes are ruled out and history clearly suggests that symptoms started post-COVID.”
Treatment and Living with Chronic Fatigue Syndrome
There is currently no universal cure for CFS, but treatment options are available. Treating symptoms might help some people with CFS feel better, but it might not work the same for everyone. There are other ways to manage activities that could also be useful.
It's important for patients, their families, and doctors to team up and figure out which symptoms are causing the most trouble. These should be the ones tackled first. When discussing treatment options, like medications or other therapies, it's crucial to talk about what might help and what might cause problems.
“There is no specific single treatment,” Barshikar says. “Certain medications like stimulants can be tried but are not typically approved or always beneficial. It is important to manage sleep, nutrition, hydration and physical activity in chronic fatigue. Patients with severe fatigue and PEM [post exertional malaise] are told to plan, prioritize, prevent and pace to minimize symptoms.”
Treatment will vary on the symptom and severity. For example, if you struggle most with sleeping well, creating good sleep habits can go a long way in helping to treat the symptoms of CFS. If trying simple tricks doesn't work, your doctor might suggest sleep medications. Starting with basic ones from the store, they may move to prescribed medicines in small doses for a short time. Even after a full night's sleep with these medicines, you may still feel tired. In such cases, seeing a sleep specialist could help, although not all symptoms might disappear.
If pain, is your top priority, your doctor may recommend basic pain relievers like acetaminophen, aspirin, or ibuprofen. If these don't help, a pain specialist might be needed. Counseling can also assist those dealing with long-term pain. Stretching, gentle massage, heat therapy, exercises, water therapy, and acupuncture (from a licensed practitioner) might also provide relief for some patients.
If mental health symptoms are bothering you the most, such as depression, stress and anxiety, your doctor may prescribe antidepressants or anti-anxiety medications, but these should be used cautiously due to potential side effects. Mental health professionals might be recommended if concerns arise. Techniques like deep breathing, muscle relaxation, massage, and certain movement therapies (like yoga or tai chi) could help reduce stress and promote a sense of well-being.
You should talk with your doctor/s about all potential therapies because many treatments that are promoted as cures for CFS are unproven, often costly, and could be dangerous.
Chronic Fatigue Syndrome (CFS) presents a significant challenge for millions of Americans, characterized by persistent and debilitating fatigue alongside a spectrum of symptoms impacting daily life. While its exact cause remains elusive, recent observations suggest a potential link to past COVID-19 infection.
Despite lacking a universal cure, managing CFS involves a personalized approach focusing on symptom alleviation, encompassing sleep management, pain relief strategies, and mental health support. As research continues, understanding and effectively managing CFS remains crucial for both patients and health care providers in enhancing the quality of life for those affected by this complex condition.