Chronic Fatigue Syndrome CFIDS Overview
What is chronic fatigue syndrome (CFS)?
Chronic fatigue syndrome (CFS), sometimes called myalgic encephalomyelitis (ME), is a condition that makes you feel so tired that you can’t do all of your normal, daily activities. There are other symptoms too, but being very tired is the main one. Some people have severe fatigue and other symptoms for many years.
CFS is not well understood. Most experts now believe that it is a separate illness with its own set of symptoms. But some doctors don’t believe this.
There are no tests for CFS. Because of this, many people have trouble accepting their disease or getting their friends and family to do so. Having people who believe your diagnosis and support you is very important. Having a doctor you can trust is critical.
Your tiredness is real. It’s not “in your head.” It is your body’s reaction to a mix of factors.
What causes CFS?
Doctors don’t know what causes CFS. Sometimes it begins after a viral infection, but there is no proof of any connection. It’s likely that a number of factors or triggers come together to cause CFS.
What are the symptoms?
Extreme tiredness, or fatigue, is the main symptom. If you have CFS:
- You may feel exhausted all or much of the time.
- You may have problems sleeping. Or you may wake up feeling tired or not rested.
- It may be harder for you to think clearly, to concentrate, and to remember things.
- You may also have headaches, muscle and joint pain, a sore throat, and tender glands in your neck or armpits.
- Your symptoms may flare up after a mental or physical activity that used to be no problem for you. You may feel drained or exhausted.
Depression is common with CFS, and it can make your other symptoms worse.
How is CFS diagnosed?
There are no tests for CFS. Doctors can diagnose it by ruling out other possible causes of your fatigue and by using a set of rules. Many other health problems can cause fatigue. Most people with fatigue have something other than chronic fatigue syndrome.
Here is one set of criteria (rules) that doctors use to diagnose chronic fatigue syndrome:
The fatigue and the other symptoms must last, or come and go, for at least 6 months in adults or 3 months in children.
The symptoms cannot be explained by another illness.
All of these symptoms must be present:
- Extreme physical or mental fatigue
- Not feeling well after being active (post-exertional malaise)
- Sleep problems
- Pain
Two or more of these symptoms related to brain function must be present:
- Problems with concentration, short-term memory, or thinking of the right word
- Being very sensitive to light, noise, or emotions
- Confusion, slow thinking, or feeling disoriented
- Muscle weakness or muscle coordination problems
One or more symptoms from two of these groups must be present:
- Recurrent flu-like symptoms, sore throats, tender lymph nodes, or new sensitivities to food, medicines, odors, or chemicals
- Low body temperature, cold hands and feet, sweating, or feeling worse when under stress
- Lightheadedness and dizziness, very fast heartbeat, or shortness of breath when active
How is it treated?
There is no treatment for CFS itself, but many of its symptoms can be treated. A good relationship with your doctor is important. That’s because the two of you will need to work together to find a combination of medicines and behavior changes that will help you get better. Some trial and error may be needed, because no single combination of treatments works for everyone.
Home treatment is very important. You may need to change your daily schedule, learn better sleep habits, and use regular gentle movement or exercise to fight fatigue. Even at times when you have more energy, keep a low-key pace throughout each day. Rest often.
Living with CFS can be as much a mental health challenge as it is a physical one. Take steps to avoid getting caught in a cycle of frustration, anger, and depression. Learning to cope with your symptoms and talking to others who have CFS can help. So can working with a counselor.
Chronic fatigue syndrome (CFS) symptoms usually start suddenly. But for some people, they develop gradually over weeks or months. Symptoms can change in a day, and from day to day. They tend to stop (remission) and then start again (relapse).
There is broad range of CFS symptoms. But there is a core set of symptoms that affect nearly everyone with CFS. These core symptoms are:
Extreme physical fatigue, mental fatigue, or both. It can be constant, or it can come and go. It is not relieved by rest. This fatigue also is so severe that it interferes with your work, your play, and your social activities.
Feeling unwell after being active. This can mean you feel ill or weak or your CFS symptoms are worse. There can be a delay before it starts. It can take more than 24 hours to feel better.
Sleep problems.
Pain, which can be widespread or in one place. CFS pain can be in one area, then move to another. You may have:
- Muscle pain.
- Joint pain.
- Headache.
A person with CFS also has two or more of these symptoms:
- Problems with concentration, short-term memory, or thinking of the right word
- Being very sensitive to light, noise, or emotions
- Confusion, slow thinking, or feeling disoriented
- Muscle weakness or muscle coordination problems
CFS also causes the following symptoms. Different people with CFS have different combinations of:
- Lightheadedness and dizziness, very fast heartbeat, or shortness of breath when active.
- Urinating often, nausea, or irritable bowel syndrome (IBS).
- Low body temperature, cold hands and feet, sweating, or trouble with heat or cold.
- Feeling worse when under stress.
- Weight change or appetite change.
Having depression along with CFS is common and can make CFS symptoms worse.
CFS causes symptoms that are the same as many other diseases, especially early on. For this reason, it can be diagnosed only after a thorough evaluation has ruled out other conditions with similar symptoms.
Doctors don’t know what causes chronic fatigue syndrome (CFS). For many people, CFS symptoms start after a viral illness. In some cases, CFS seems to follow a major physical or emotional trauma or an exposure to toxins. But there is no single known cause of CFS.
Since there is not yet a cure for chronic fatigue syndrome (CFS), the key to living with CFS is treating your symptoms.
Find a primary doctor who understands CFS and how to treat it, and who helps you feel supported.
Track what helps you feel better, as well as the things that make your symptoms worse.
Use a mix of medical care, daily self-care, and support.
For regular support you can count on, work with a professional counselor, a CFS support group, or both.
Get specialist care when you need it. Sign “release of information” forms so that your doctors can work together as a team.
Treat the worst first
Start by listing your worst symptoms-the ones that make it hardest to get through the day. With your doctor, focus first on treating those symptoms. Decide whether a specialist might be helpful for any of them.
The most common CFS symptoms can also be the most treatable.
Sleep
Good sleep habits can help improve the quality of your sleep. If you also try medicine for sleep, it’s best to start on a low dose. Certain antidepressants help with sleep, mood, and chronic pain, so your doctor may suggest trying one.
Insomnia: Improving Your Sleep
Pain
Different kinds of pain can be treated in different ways. If one treatment doesn’t work, you and your doctor can try another until you find what works best for you.
It’s important to control focused pain, such as arthritis or migraine, because this kind of pain can make CFS body pain worse. First try an over-the-counter pain reliever, like acetaminophen (such as Tylenol), ibuprofen (such as Advil or Motrin), or naproxen (such as Aleve). Be safe with medicines. Read and follow all instructions on the label.
There are different types of prescription medicines that help with pain, such as antidepressants for chronic pain and narcotic medicine for severe pain. A narcotic is a short-term treatment because it can become addictive if you use it a lot.
Other treatments that can help with CFS pain include acupuncture, massage, or yoga.
Fatigue
Do all you can to take charge of your fatigue level. Even when you have more energy, keep a low-key pace throughout each day.
Adjust your daily schedule to take advantage of times when you have more energy. Take rest breaks often.
Unless your CFS is severe, try a graded exercise program, starting out with gentle and easy movement. Start with as little as 1 minute, and slowly add more over days or weeks. Studies have shown that a carefully planned graded exercise program can help some people with CFS regain their strength and energy and feel better.
Chronic Fatigue Syndrome:
- Using Graded Exercise to Get More Energy
- Try cognitive-behavioral therapy (CBT). This is a type of counseling that has been shown to help some people who have CFS feel less tired.2It teaches you how to change the way you think and do things. These changes can help you better cope with fatigue and other symptoms. Chronic Fatigue Syndrome: Using Cognitive-Behavioral Therapy
Depression, anxiety, and distress
Living with CFS can be as much a mental health challenge as it is a physical one. It’s easy to get caught in a cycle of frustration, anger, and depression.
Work with your doctor to watch for signs of depression. It can be easy to mistake depression for CFS fatigue.
If your doctor suggests an antidepressant, ask if there is one that may not only improve your mood, but also help control your pain and help you sleep.
For support and help with mood problems, you can also work with a professional counselor who understands CFS.
Get specialist care when you need it
You can expect your symptoms to come and go. For some people, certain things trigger long periods of worse symptoms. Visit your doctor every few months to help track your symptoms and check for any need to change your treatment.
Get specialized care if you need it. For example:
A rehabilitation specialist can help you start a graded exercise plan. He or she can also treat pain.
A pain management specialist can offer a number of pain treatments.
There are some specialists who work with experimental treatments such as antiviral medicines.
What to think about
There are many unproven remedies, such as special diets or mineral supplements, that some people recommend for treating CFS. There is no evidence that any of these are effective.
Your mind and body are connected and affect each other. Physical illnesses can be made worse-or better-by your feelings and attitudes, and vice versa. Learn as much as you can about CFS. Then work with your doctor to learn ways to cope with your symptoms. Get emotional support from your health professionals as well as from your family and friends.
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