See also…
Fibromyalgia
Autoimmune
Disease: Overview
What is Chronic Fatigue Syndrome (CFS)?
Having
chronic fatigue syndrome, or CFS, means more than just getting
tired. With the busy lives American women lead, we all get tired
from time to time. But, the fatigue with CFS is extreme and overwhelming,
and doesn't get better with bed rest. And, it is often made worse
with physical or mental activity.
This
illness seems to happen all of a sudden - one day you may notice
that you are very tired and can't manage your normal activities.
Your energy level is lower and you often get tired for no reason.
You may also feel weak and have muscle pain, difficulty focusing,
or insomnia (not being able to sleep). After you engage in physical
activity or exert yourself, you may feel tired for more than 24
hours. The extreme fatigue may then come and go, giving you times
when your energy level is normal. Sometimes, though, the extreme
tiredness never stops, leaving you feeling exhausted and depleted
all the time. You notice that you can't get done in a day what
you normally would have been able to, before having this condition.
CFS is diagnosed only when other possible causes of the fatigue
are ruled out, and the fatigue has lasted for at least 6 months.
There are treatments to help a person cope with CFS, some of which
include medication. Sometimes CFS goes away on its own or a person
can have long periods of time, even years, without symptoms.
What causes CFS?
No
one knows for sure what causes CFS. For more than 100 years, doctors
have reported seeing illnesses like CFS. Some causes of CFS offered
over the years by health experts include anemia (low iron in the
blood); hypoglycemia (low blood sugar); environmental allergies;
and candidiasis (yeast infection) in the entire body.
Sometimes
CFS develops on its own, for no reason. But, most persons with
CFS say that it started after having a cold, bronchitis, hepatitis,
or an intestinal virus. It can also follow a bout of infectious
mononucleosis (mono), the "kissing disease" that drains
the energy of many teenagers and young adults. Some persons with
CFS say their illness began after a time of extreme stress, such
as the loss of a loved one or undergoing major surgery.
It
can be hard to figure out if a person has CFS. This is because
many illnesses have extreme fatigue as a symptom and many treatments,
such as chemotherapy, can cause extreme fatigue.
What are the signs of CFS?
CFS
symptoms either stay with a person or come and go for more than
6 months. Initial symptoms can feel like you have the flu. Besides
extreme fatigue and weakness, CFS symptoms include:
Headaches
of a new type, pattern, or intensity
Tender
lymph nodes
Sore
throat
Muscle
pain or aches
Pain
or aches in several joints without swelling or redness
Not
being able to concentrate, focus, or remember
Feeling
tired even if sleeping
Feeling
discomfort or "out-of-sorts" after physical exertion
How common is CFS? Who gets it?
The
Centers for Disease Control and Prevention estimates as many as
half a million Americans have a CFS-like condition. In the early
1980s it was first called the "yuppie flu" because mostly
well-educated women with high incomes in their 30s and 40s sought
help for CFS-like symptoms. It is now known that this illness
affects people of all ages, racial/ethnic backgrounds, and economic
situations. And, it isn't just an American illness - people all
over the world are affected by CFS.
More
women than men are diagnosed with CFS. But, it isn't known for
sure that this illness affects women more than men. Women may
be more likely than men to talk to their doctors about symptoms
like exhaustion and pain.
How would my health care provider
know if I have CFS?
There
has been much debate among CFS experts about a standard way to
define CFS. This is because the cause for CFS is not known and
there is no one standard symptom. Your health care provider will
first do a physical exam and order any needed tests. She or he
will rule out the presence of any other diseases or problems that
may have CFS-like symptoms, such as multiple sclerosis and systemic
lupus erythematosus (autoimmune diseases). To be diagnosed with
CFS, you must have severe chronic fatigue for 6 months or longer,
with other medical conditions ruled out by a provider, and 4 or
more of the symptoms bulleted out in the question "What are
the signs of CFS" in this FAQ.
How is CFS treated?
Right
now, there is no treatment that works to cure CFS. The good news
is there are things you can do to feel better, increase the level
at which you can function, and improve your quality of life.
Talking
with your health care provider about treatments for your symptoms,
along with ways to manage your fatigue, is a good place to start.
And, building a good relationship with your provider is key to
managing your illness over time. This will help you to talk more
freely with your provider about your symptoms, which can improve
the treatment of your illness. Keep in mind your provider may
need to learn more about CFS to better help you. If you feel your
provider doesn't know a lot about CFS or has doubts about whether
it is a "real" illness, see another provider for a second
opinion. Try a local university medical school or research center
for help with finding providers with expertise in CFS.
Medications
can work to relieve the symptoms of CFS. Nonsteroidal anti-inflammatory
drugs, or ibuprofin (Advil, Motrin, Alleve), can help with body
aches, headaches, and muscle and joint pain. Non-drowsy antihistamines
can relieve allergy symptoms, such as runny nose and itchy eyes.
While there is no proof these practices help, some people report
symptom relief with massage, acupuncture, and chiropractic care.
Physical activity and exercise can also help with symptom relief,
but be sure to talk with your provider about developing an activity
and exercise program that's best for you. For some people, physical
activity and exercise can worsen symptoms. (See next question
on "What can a person do to cope with CFS?" for more
information on physical activity and exercise.)
Drugs
used to treat depression, or antidepressants, are sometimes used
to treat CFS. This is because studies have found that people with
fibromyalgia, an illness similar to CFS, get relief from taking
these drugs. Some experts believe these drugs improve the quality
of sleep, helping decrease fatigue with CFS. Two types of antidepressants
are most often prescribed by providers - low-dose tricyclic antidepressants
or the newer selective serotonin reuptake inhibitors (SSRIs).
What can a person do to cope with
CFS?
When
you have CFS, learning how to pace yourself and manage or avoid
physical and emotional stress is important. Physical activity
helps you to feel better not just physically, but emotionally
as well. Regular exercise can lessen body aches, joint and muscle
pain, and increase energy. But, be careful not to over do it.
Too much exercise can end up causing more fatigue. As you build
up strength over time, you may be able to increase the intensity
of your exercise program. Physical therapists and rehabilitation
medicine specialists can help you develop an exercise program
and a daily activity plan that won't be too stressful or something
you can't handle.
Cognitive
behavioral therapy is a special treatment that can help you to
change the way you think about your condition. It also helps you
to develop ways to improve both your daily functioning and quality
of life.
Yoga,
stretching, and self-hypnosis are some alternative treatments
that some people report help with CFS. Keep in mind that there
are many alternative treatments, dietary supplements, and herbal
remedies touted to cure illnesses like CFS, which can end up doing
a person more harm than good. Remember to always keep your health
care provider informed of the other health care professionals
and alternative practitioners you are seeing.
Having
an illness for which there is no cure can cause psychological
stress and even depression for some people. It is normal to feel
cranky, sad, angry, and frustrated with an illness that causes
extreme fatigue and pain. Psychotherapy (sometimes called "talk
therapy") can help you learn how to manage your feelings
about this difficult illness. It may also be helpful to join a
support group, where you can talk with other people who are going
through the same thing. See the "For more information…"
section at the end of this FAQ for referrals to consumer organizations
that can help you to cope with CFS.
If
a person becomes so disabled with CFS that they can no longer
work, they can contact the Social Security Administration for
help with disability benefits. There are two social security programs
that have the same medical requirements for disability payments
- the Social Security Disability Insurance Program and the Supplemental
Security Income (SSI) Program. Your prior work history will determine
if you can receive Social Security disability. SSI payments are
made on the basis of financial need. Contact the Social Security
Administration toll-free at (800) 772-1213 or check out their
web site, http://www.ssa.gov for more information.
What is the latest research on
CFS?
Both
the National Institutes of Health and the Centers for Disease
Control and Prevention have research programs to fund CFS studies.
Researchers are focusing on doing more long-term studies with
people with CFS, to look at changes in CFS symptoms over short-
and long-time periods. The neuroendocrine system, which is involved
in how the body reacts to stress, is also being studied. The role
of hormones, cytokines in particular, in the body may also provide
clues about how the body responds to stress, as well as CFS. Studies
are also being done to look for the presence of infectious agents
in people with CFS, and how the body responds to these agents.
Researchers
are looking at how disturbed sleep and pain reactions affect CFS.
Some experts think that disrupted sleep may cause many of the
symptoms of CFS. Others think that women may experience pain differently
than men, as well as have different reactions to drugs. CFS-related
depression caused by disturbed sleep is also being studied. And,
research into fatigue is being done, which may help develop better
approaches to dealing with fatigue.
For more information...
You can find out more about chronic fatigue syndrome by contacting
the National Women's Health Information Center at (800) 994-9662
or the following organizations:
Center for Disease Control 24-Hour Chronic Fatigue
Syndrome Voice Information System
Phone Number(s): (888) 232-3228
Internet Address: http://www.cdc.gov/ncidod/diseases/cfs
Chronic Fatigue and Immune Dysfunction Syndrome
Association of America
Phone Number(s): (800) 442-3437
Internet Address: http://www.cfids.org
National Institute of Allergy and Infectious Diseases
Phone Number(s): (301) 496-5717
Internet Address: http://www.niaid.nih.gov/
National CFIDS Foundation
Phone Number(s): (781) 449-3535
Internet Address: http://www.ncf-net.org
National Chronic Fatigue Syndrome and Fibromyalgia
Association
Phone Number(s): (206) 313-2000
Internet Address: http://www.ncfsfa.org
American Association for Chronic Fatigue Syndrome
Phone Number(s): (206) 781-3544
Internet Address: http://www.aacfs.org
This FAQ was developed from chronic fatigue syndrome
fact sheets of the National Institute of Allergy and Infectious
Diseases and the Centers for Disease Control and Prevention.
All material contained in the FAQs is free of copyright
restrictions, and may be copied, reproduced, or duplicated without
permission of the Office on Women's Health in the Department of
Health and Human Services; citation of the sources is appreciated.
This FAQ has been reviewed by Eleanor Z. Hanna,
Ph.D. of the Office of Research on Women's Health, National Institutes
of Health
September 2002
