FOR THE NEWLY DIAGNOSED
If you were just diagnosed with Fibromyalgia (FM) and/or Chronic
Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), most likely you have been battling
pain and fatigue for awhile. Of the people we've surveyed, it took them an average of
seven years to be diagnosed.
While it can be relieving to finally have a name for your symptoms, learning that you
have a chronic condition that you will most likely have to deal with for life can
be distressing. We have created this section if for you, to help you in learning to
live with your FM and/or CFS/ME.
Choose from the menu below for more information. You can always
Contact Us if you have any questions.
Tips for the Newly Diagnosed
Don't let pain from Fibromyalgia (FM) and Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis (CFS/ME), keep you down. Small changes to your daily routine can keep
you active and enjoying life. Here are some tips to help you improve your quality of
life with FM and/or CFS/ME.
Always Believe in Yourself
And what you are feeling both emotionally and physically. No one can tell you that what
you are experiencing is not real! FM and CFS/ME are chronic medical disorders just
like diabetes, hypertension, and asthma. While there are still gaps understanding
these disorders, and disagreements among researchers as to specific causes, the
symptoms are very real, and your suffering is legitimate.
Never Feel Guilty
FM and CFS/ME aren't something you wished for, and they aren't something you can wish
away. Healthcare providers have had trouble accepting FM and CFS/ME as bona fide medical
conditions because of the lack of readily available blood tests or X-rays that show there
is something wrong with the FM and CFS/ME patient's body. However, research studies
have revealed problems in such areas as the chemical content of the spinal fluid, the
manner in which certain endocrine glands and the autonomic system respond to stress, in
brain function, and in patient performance during tests of cognitive and physical
function. FM and CFS/ME are not psychiatric conditions or character flaws.
FM and CFS/ME Can Wax and Wane
So on the days that are extra challenging, remember that it will get better. FM and
CFS/ME involve much more than just pain. In fact, surveys of patients have
consistently suggested that fatigue may be just as problematic, if not more so. Other
leading symptoms that are associated with these disorders include sleep
disturbances, stiffness, and problems with concentration and certain forms of memory.
While many clinicians associate FM and CFS/ME with depression, it appears
that anxiety-related issues may be more prominent. Appropriate therapies can help keep
flares under control, and good self-management techniques can help stave them off.
You're Never Alone
FM and CFS/ME can sometimes make you feel very alone. Keep in mind that over 10
million Americans have FM and/or CFS/ME and feel just like you do! Our
Support Group Database consists of
681 Support Groups in 16 countries worldwide that offer support
to people with FM and/or CFS/ME. Help is just around the corner.
Get Enough Sleep!
Many of us are plagued by sleep disturbances,
so it is extra important that you do everything you can to make sure that you sleep
as well as possible. Go to bed at the same time each night. Develop a bedtime
routine. That will help your body to know that it is time to relax. If your bed
is uncomfortable, consider getting a new mattress. If a new mattress is not
financially feasible, a mattress pad and new pillows might help. Make sure that
your bedroom isn't too hot or too cold.
During the day when you get tired, it is important to rest. Rest can be lying down in
bed with a book for half an hour or watching TV with your feet propped up. It can
be doing a sitting task at work. Whenever I am tired, I do something to make myself more
comfortable. That invariably leads to me having more energy for the next thing I need or
want to do.
Find A Good Healthcare Provider
Some doctors are more familiar with FM and CFS/ME than others. Ideally, the
relationship between a healthcare provider and a patient should be comfortable and based
on mutual respect. When considering potential providers, patients should do
some "homework." Do they have good reputations among professional colleagues, and do
their patients speak well of them? Do they have a positive attitude toward FM and CFS/ME,
do they keep up with current insights on treatment options? These are all questions you
need answers to when searching for a healthcare provider. Our
consists of 7363 doctors in 80 countries worldwide that specialize
in helping people with FM and/or CFS/ME.
Try Hot Baths
Soaking in a hot bath is an excellent way to relieve stress and relax
your muscles. Thirty minutes in a hot bath (or even better a hot tub) can be a great way
to start the day or a relaxing part of your bedtime routine.
Use Gentle Massage
Ask you partner or a friend to rub an aching back. Aching arm or
leg muscles can even be massaged by yourself. The trick is keeping the massage gentle.
You don't want to trigger a pain reflex, just to signal to your muscles that it is ok
Ask For Help!
This one is perhaps the most difficult but very important. There are
most likely people in your life who would be happy to help out on an occasional or
regular basis. Even asking for help with little things can make a huge difference. Can
your partner bring you a drink so you don't have to stand up? Can your kids make their
own lunches? Is your mom willing to run some errands for you when she is going out to
do her own? Asking others to help you with simple things will give you more energy for
the important things.
Don't Be Afraid of Pain Relievers
Talk to you doctor about what types of pain
relievers might be best for you and then when you need them, take them. I know too
many people who suffer because they are afraid of their medication. If you are worried
about possible side effects, talk to your doctor and pharmacist about it and
change medications if necessary.
Leave Work Stress at Work
Life is hard enough without bringing home stress from
a stressful job. This is especially important when you have FM and CFS/ME. Carefully
consider each of the sources of stress at your place of employment and come up with a
plan to improve things. Can you alternate physical and nonphysical tasks? Share sources
of stress with co-workers. It will not be to your benefit to take all the worst things
on yourself. If your job causes a lot of stress, see if you can cut back on hours or
transfer to a different position or location. It might even be in your best interest
to leave. Usually there are other options for cutting work stress, but if your job is
making you sicker, it might be best to cut expenses for awhile and find less
stressful employment or another way to support yourself.
Keep The Lights On!
Sunlight improves mood and reduces stress. It also helps in the production of vitamin
D. Vitamin D deficiency has been linked to bone pain and muscle weakness. Try to take
a leisurely walk outside each day, or if you aren't up to it, just sit in a sunny spot
and relax. Obviously there are times of the year in some climates where sunshine is a
rare occurrence. During those times, keep your house as bright as possible. Turn on
the lights when you get up in the morning and don't dim them until it is time to start
your bedtime routine. You will find your mood brighter and have fewer FM and CFS/ME
Learn to Listen to Yourself
The thing that has helped me the most is learning to
stop regularly during the day to see how my body and mind are doing and then to do
what is necessary to make myself more comfortable. So many things can make bad flare
days worse. Learn to ask yourself if you are hungry or thirsty or need to move or rest.
Have you been on the computer too long? Do you need company? It is too easy in our busy
lives to just push past our needs, but in the end, learning to listen and respond to
yourself, will lead to a happier, less stressful, and less painful life.
Never Give Up Hope!
Every day we are making advances in the awareness, research and treatment of FM and
CFS/ME. People, organizations, companies, and medical experts are all working to ensure a
better future for people with these medical conditions! There is hope. In the last 15
years, medical science has made tremendous strides in our understanding of the
basic pathology of these disorders, and advances are rapidly being made in the manner
in which they are being treated.
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Explanation of Fibromyalgia (FM)
If you have just been diagnosed with fibromyalgia syndrome, than you are probably
wondering exactly what to expect in your future. What symptoms will you develop? Will the
pain get worse? Will you ever completely recover? Unfortunately, there are a lot of
questions when it comes to fibromyalgia, and not always the best answers.
The Course of Fibromyalgia
The course that fibromyalgia takes depends upon the individiual. Typically, fibromyalgia
begins with some minor aches and pains. Gradually, pain will become more pronounced and
noticeable. You'll begin to lose some muscle strength and movement, which may affect your
mobility. For instance, you may find that you have trouble getting out of bed in the
morning or completing your responsibilities at work. You will also begin to notice other
fibromyalgia symptoms popping up.
Fibromyalgia symptoms tend to turn up in cycles. You may notice that your symptoms are
fine one day and really bad the next. This is known as a fibromyalgia flare. Certain
things can trigger flares, like alcohol, overexertion, and insomnia. Over time, you will
learn to recognize those things that trigger your flares.
Does Fibromyalgia Get Worse?
Luckily, research shows that fibromyalgia symptoms tend to level out over time. This
means that your symptoms shouldn't get any worse. However, fibromyalgia is a chronic
illness, which means recovery is difficult. You may always have to live with some
symptoms. If your health continues to decline or declines quickly, seek appropriate
treatment. Sometimes, fibromyalgia can cause associated conditons that may affect your
What Fibromyalgia Is
Fibromyalgia is a complex condition that's difficult to understand, even for some people
with a medical degree. Because it involves the brain and nervous system, FM can have an
impact on virtually every part of the body.
If you're trying to understand this condition for the first time it can be
incredibly confusing. When a lot of people see a bizarre collection of fluctuating
symptoms that don't show up in medical tests, they decide FM must be a psychological
problem. However, a host of scientific evidence proves that it's a very real
Digging through that scientific research doesn't help most of us, though. Terms
like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways
aren't exactly easy to grasp.
I will try to help you understand and relate to what's going on in the body of someone
with FM, in plain terms and without medical jargon.
Understanding the Pain of Fibromyalgia
Imagine you're planning a party and expecting about 20 guests. Three or four friends
told you they'd come early to help you out. But they don't know show, and instead of 20
guests, you get 100. You're overwhelmed.
That's what's happening with pain signals in someone who has FM. The cells send too many
pain messages (party guests), up to five times as many as in a healthy person. That can
turn mild pressure or even an itch into pain.
When those pain signals reach the brain, they're processed by something called
serotonin. People with FM, however, don't have enough serotonin (the friends who didn't
show up to help), leaving the brain overwhelmed.
This is why people with FM have pain in tissues that show no sign of damage. It's not
imagined pain; it's misinterpreted sensation that the brain turns into very real pain.
Other substances in the patient's brain amplify signals - essentially, "turning up the
volume" of everything. That can include light, noise and odor on top of pain, and it
can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.
Understanding the Ups & Downs of Fibromyalgia
Most people with a chronic illness are always sick. The effects on the body of cancer,
a virus, or a degenerative disease are fairly constant. It's understandably confusing to
see someone with FM be unable to do something on Monday, yet perfectly capable of it
Look at it this way: Everyone's hormones fluctuate, and even things like weight and
blood pressure can rise and fall during the course of a day, week or month. All of the
systems and substances in the body work that way, rising and falling in response to
Research shows conclusively that FM involves abnormal levels of multiple hormones and
other substances. Because those things all go up and down, sometimes one or more are in
the normal zone and other times they're not. The more things that are out of the zone,
the worse they'll feel.
Understanding Stress & Fibromyalgia
Some people think FM patients are emotionally incapable of dealing with stress, because
a stressful situation will generally make symptoms worse.
The important thing to understand is that we respond to stress both emotionally
and physically. A physical response, in everyone, includes a rush of adrenaline and
other hormones that help kick your body into overdrive so you can deal with what's
People with FM don't have enough of those hormones, which makes stress very hard on
their bodies and can trigger symptoms.
Also, when we talk about "stress" we usually mean the emotional kind, which can come from
your job, a busy schedule, or personal conflict. A lot of things actually cause
physical stress, such as illness, lack of sleep, nutritional deficiencies and
injuries. Physical stress can have the same effect as emotional stress.
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up
all night studying for a test. Maybe you were up multiple times to feed a baby or take
care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of
kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep
would take that feeling away.
With FM, though, comes sleep disorders that make a good night's sleep a rarity. A person
with FM can have anywhere from one to all of the following sleep disorders:
- Insomnia (difficulty getting to sleep or staying asleep)
- Inability to reach or stay in a deep sleep
- Sleep apnea
(breathing disturbances that can wake the person repeatedly)
- Restless leg syndrome
(twitching, jerking limbs that make it hard to sleep)
- Periodic limb movement disorder (rhythmic, involuntary muscle contractions that
prevent deep sleep)
Fibromyalgia In a Nutshell
A lot of illnesses involve one part of the body, or one system. FM, however, involves
the entire body and throws all kinds of things out of whack. As bizarre and confusing as
the varied symptoms may be, they're tied to very real physical causes.
FM can take someone who is educated, ambitious, hardworking and tireless, and rob them
of their ability to work, clean house, exercise, think clearly and ever feel awake
- It's NOT psychological "burn out" or depression
- It's NOT laziness
- It's NOT whining or malingering
It IS the result of widespread dysfunction in the body and the brain
that's hard to understand, difficult to treat, and so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support
and understanding of people in their lives can make it a lot easier.
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Explanation of Chronic Fatigue Syndrome/Myalgic
We all get tired. It's part of life, and especially part of modern life. Think for a
moment about the last time you were really tired at work. It's harder to focus, harder
to function, but you can push through it.
Now think back to the last time you were really sick with something like strep or the
flu, too sick to work, and too sick to function. Can you remember how exhausted you
were, how hard it was to get out of bed and even take a shower? When you're sick
like that, it's like your body just shuts down and demands that you rest.
There's a big difference between the two types of tired, right? That second kind of
tired is what people with CFS/ME deal with every day. They're not just sleepy, and
they can't just push through it. They're so wiped out that their bodies demand rest
and sleep constantly.
Most people who are regularly tired can trace it to some aspect of their lives, they
don't get enough sleep, they're too busy, they're under too much pressure, etc. People
with CFS/ME, however, don't have an obvious cause of fatigue. Usually, they were
perfectly healthy people one day and no longer healthy the next.
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) is a complex illness
characterized by severe, prolonged fatigue in addition to numerous other recurrent
clinical symptoms including pharyngitis, persistent low grade fever, lymphadenopathy,
myalgia, arthralgia, headache, sleep disorders, difficulty in concentrating, and short
term memory loss. According to The Center for Disease Control (CDC), CFS/ME affects
more than 4 million people in the United States.
What Does Chronic Fatigue Syndrome Do to Your Body?
In most cases, CFS/ME comes on suddenly. While scientists don't yet know exactly what
causes it, a growing pool of evidence points to a combination of genetic predisposition
and exposure to viruses or toxins. Many cases start after a flu-like illness, but then
some of the symptoms never go away.
What many experts believe is going on in the body of someone with CFS/ME is constant
immune system activation, as if the body is trying to fend off illness. Working that hard
all the time is a big drain on the body, which is part of the reason we all get so tired
when we're sick.
As if that level of fatigue weren't enough to deal with, CFS/ME can bring a host of
other symptoms. Experts recognize about 45 of them, and each person deals with a
different mix of symptoms and levels of severity.
Common CFS/ME Symptoms Include:
- Sleep that isn't refreshing
- Muscle and joint aches
- Sore throat
- Swollen lymph glands
- Cognitive problems
The cognitive problems associated with CFS/ME are sometimes severe. Regardless of
how intelligent the person is, he or she may become forgetful, be unable to recall
common words, frequently lose a train of thought, or sometimes become confused. Simple
tasks such as reading a newspaper, cooking a simple meal, or finding your car in a
parking lot become daunting and overwhelming.
Well-meaning people frequently tell those with CFS/ME that they'd feel better if they'd
get more exercise. Most people do get an energy boost from exertion, but people with
CFS/ME don't. They have a symptoms called post-exertional malaise, which means that
even small amounts of exertion can make all of their symptoms worse for a couple of
days. Since deconditioning can add to the fatigue and weakness that CFS patients face,
a gentle graded routine is one of the treatment recommendations.
Chronic Fatigue Syndrome, Disbelief, and the Need for Support
Imagine suddenly feeling sick and exhausted all the time and having someone tell you
that you're not really sick. People with CFS/ME face that all the time. Some doctors
say they're depressed or that it's all in their heads - they're just whiners
or hypochondriacs. It's also common for them to tell someone, "I have CFS/ME," and
hear something like, "I think I have that, too. It seems like I'm always tired."
Because we don't yet have a good diagnostic test for CFS/ME, sometimes it's hard for
people with the condition to convince the people around them they're really sick. It
can strain marriages, drive friends apart, and make work conditions especially
stressful. People with CFS/ME often end up feeling isolated, which compounds the
depression that frequently goes along with any debilitating illness.
Some people with CFS/ME find medications, supplements and life-style changes that help
them feel better, but it's a long, difficult process of experimentation and not
everyone finds things that make a big difference. So far, no drug is FDA approved
for treating CFS/ME, and no treatment works for everyone.
Chronic fatigue syndrome can take someone who is educated, ambitious, hardworking
and tireless, and rob them of their ability to work, clean house, exercise, think
clearly and ever feel awake or healthy.
- It's NOT psychological "burn out" or depression.
- It's NOT laziness.
- It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain
that's hard to understand, difficult to treat, and, so far, impossible to cure.
CFS/ME is a serious, life-altering, frustrating, often misunderstood illness. What
people with CFS/ME need most of all from those around them is emotional support
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Misinformation can be as harmful as a misdiagnosis. The following are a few of the myths
about Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and the facts.
Myth 1: CFS/ME is a disease defined just by a group of symptoms. There are no
Many published studies4-5-6-7-8-9-10-11
report abnormalities of the central nervous system, autonomic nervous system, and
immune system in patients with CFS/ME, abnormalities not present in comparison groups
who are healthy or have other fatiguing illnesses.
Myth 2: Whenever one research group finds a biological abnormality in patients with
CFS/ME, another research group can't find it.
With research on virtually all illnesses, there are always some reports in the
research literature that conflict. The question with CFS/ME or any illness is: Counting
all of the published reports13-14
the numbers of patients in all of these reports, do the great majority of reports
involving the great majority of patients find objective biological abnormalities? The
answer for CFS/ME, with regard to studies of the nervous system and immune system, is yes.
Myth 3: CFS/ME only affects white and higher income individuals, and is a
relatively rare disorder.
Recent evidence from community prevalence studies
indicates that CFS/ME is not a YUPPIE disease, and in fact,
it occurs more often among Latino and African-American minority groups and those with
lower incomes. CFS/ME affects from 800,000 to one million individuals in the US, and
thus represents one of the more common chronic health conditions.
Myth 4: Cognitive behavior therapy interventions can cure CFS/ME.
Cognitive behavior therapy is widely used to help people cope with chronic illnesses,
both "physical" illnesses and psychological illnesses. While these types of
psychological interventions can help patients with CFS/ME cope better with their symptoms
and deal with the consequences of having a chronic health problem, these types of
intervention do not cure the illness.
Myth 5: Patients with CFS/ME are either lazy or malingering.
There is no truth to this statement, and many patients with this condition would
like nothing better than to have their old lifestyle back. They are very motivated and
often go to many physicians to find a way of getting better.
Myth 6: All cases of CFS are caused by the Epstein-Barr Virus (EBV).
These are common misconceptions among primary care providers. The onset of CFS/ME
is sometimes but not always linked with the recent presence of an infection. CFS/ME has
been reported as following acute mononucleosis (a viral infection like EBV), Lyme disease
(a bacterial infection) and Q fever (an infection with a different type of infectious
Myth 7: Patients with CFS/ME can be cured by exercise.
It's a myth that patients with CFS/ME can be cured by exercise, but it's also a myth that
no one with CFS/ME can ever benefit from some physical activity. For some patients,
a carefully monitored program incorporating paced and non-fatiguing activity can be used
to strengthen and condition muscles. But it is worth noting that Black, O'Connor, and
recently found that with an average 28% increase over baseline levels of
daily physical activity over for a four week period, patients with CFS/ME indicated they
had worsening overall mood, muscle pain intensity and time spent each day with fatigue.
Myth 8: CFS/ME is difficult to diagnose.
Actually it is pretty straightforward to diagnose when familiar with the case definition.
It is, however, important to determine whether the Fukuda et al. (1994)
22 or the
Canadian case definition of CFS/ME is being used (Caruthers et al., 2003).
Myth 9: CFS/ME is a psychological disorder.
While rates of mood disorder are increased many chronic fatigue syndrome (CFS/ME)
patients do not have a mood disorder and mood disorders are not increased in
patients prior to their coming down with their disease.
Myth 10: CFS/ME is simply about fatigue
Not only do patients report that their fatigue is far more severe than anything they'd
ever experienced before they also often experience many other troubling symptoms such
as pain, poor sleep, inability to concentrate, troubles standing, problems with
coordination, and more.24
For more information about CFS/ME symptoms
4. Patarca R, Klimas N, Sandler D, Garcia MV, Fletcher
MA. Interindividual immune status variation patterns in patients with chronic
fatigue syndrome: association with gender and tumor necrosis factor system. J of
CFS 2(1):7-41, 1996.
5. Cannon JG, Angel JB, Abad LW, Vannier E, Mileno MD, Fagioli L,
Wolff SM, Komaroff AL. Interleukin-1 beta, interleukin-1 receptor antagonist, and
soluble interleukin-1 receptor type II secretion in chronic fatigue syndrome. Journal
of Clinical Immunology 17(3):253-61, 1997.
6. De Meirleir, K., Bisbal, C., Campine, I., De Becker, P.,
Salehzada, T., Demettre, E., Lebleu, B. (2000). A 37 kDa 2-5A binding protein as a
potential biochemical marker for chronic fatigue syndrome. The American Journal of
Medicine, 108, 99-105.
7. Natelson, B.H., Weaver, S.A., Tseng, C-L., & Ottenweller, J.E.
(2005). Spinal fluid abnormalities in patients with chronic fatigue syndrome. Clinical
and Diagnostic Laboratory Immunology, 12, 52-55.
8. Lange, G., Steffner, J., Cook, D.B., Bly, B.M., Christodoulou,
C., Liu, W.C., Deluca, J., & Natelson, B.H. (2005). Objective evidence of cognitive
complaints in chronic fatigue syndrome: A BOLD fMRI study of verbal working
memory. Neuroimage, 26(2), 513-524.
9. Hanson, S.J., Gause, W., & Natelson, B. (2001). Detection
of immunologically significant factors for chronic fatigue syndrome using
neural-network classifiers. Clinical and Diagnostic Laboratory Immunology, 8, 658-662.
10. Peckerman, A., LaManca, J.J., Dahl, K.A., Chemitiganti, R,
Qureishi, B. Natelson, B.H. (2003). Abnormal impedance cardiography predicts symptom
severity in chronic fatigue syndrome. The American Journal of the Medical Sciences,
2003, 326(2), 55-60.
11. Jason, L.A., Corradi, K., Torres-Harding, S., Taylor, R.R.,
& King, C. (2005). Chronic fatigue syndrome: The need for subtypes. Neuropsychology
Review, 15, 29-58.
12. Jason, L.A., Fennell, P., Taylor, R.R. (Editors)(2003).
Handbook of chronic fatigue syndrome. New York: John Wiley & Sons, Inc.
13. Komaroff, A.L. (2000). The biology of chronic fatigue
syndrome. American Journal of Medicine, 108, 169-171.
14. Evengard, B., Schacterle, R.S., & Komaroff, A.L. (1999).
Chronic fatigue syndrome: New insights and old ignorance. Journal of Internal Medicine,
15. Reyes, M., Nisenbaum, R., Hoaglin, D.C., Unger, E.R., Emmons,
C., Randall, B., Stewart, G., Abbey, S., Jones, J. F., Gantz, N., Minden, S., & Reeves,
W.C. (2003) Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas.
Archives of Internal Medicine, 163, 1530-1536.
16. Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M.,
Plioplys, A.V., Taylor, R., McCready, W., Huang, C., & Plioplys, S. (1999). A
community-based study of chronic fatigue syndrome. Archives of Internal Medicine.
17. Van Hoof, E. (2004). Cognitive behavioral therapy as cure-all
for CFS. Journal of Chronic Fatigue Syndrome, 11, 43-47.
18. Friedberg, F., & Jason, L.A. (1998). Understanding chronic
fatigue syndrome: An empirical guide to assessment and treatment. Washington, D.C.:
American Psychological Association.
19. Komaroff, A.L. (2000b). The physical basis of CFS. The
CFIDS Research Review, 1(2), 1-3, 11.
20. Black, C.D., O'Connor, P.J., & McCully, K.K. (2005). Increased
daily physical activity and fatigue symptoms in chronic fatigue syndrome. Dynamic
Medicine, 4:3 (doi:10;1186/1476-5918-4-3.
21. Edmonds, M., McGuire, H., & Price, J. (2004). Exercise therapy
for chronic fatigue syndrome. The Cochrane Library, Issue 3, 1-22.
22. Fukuda, K., Straus, S.E., Hickie, I., Sharpe, M.C., Dobbins,
J.G., & Komaroff, A. (1994). The Chronic Fatigue Syndrome: A comprehensive approach to
its definition and study. Annals of Internal Medicine, 121, 953-959.
23. Carruthers, B.M., Jain, A.K., DeMeirleir, K.L., Peterson,
D.L., Klimas, N.G., Lerner, A.M., Bested, A.C., Flor-Henry, P., Joshi, P., Powles,
A.C.P., Sherkey, J.A., & van de Sande, M.I. (2003). Myalgic encephalomyelitis/chronic
fatigue syndrome: Clinical working case definition, diagnostic and treatments
protocols. Journal of Chronic Fatigue Syndrome, 11, 7-115.
24. Chronic Fatigue Syndrome Myths - Chronic Fatigue Syndrome Is
Not:, Phoenix Rising website, http://aboutmecfs.org/Basics/MECFSMyths.aspx.
Misinformation can be as harmful as a misdiagnosis. The following are a few of the myths
about Fibromyalgia (FM) and the facts.
Myth 1: Fibromyalgia is not real.
Fibromyalgia is recognized as a medical condition by well-known, expert groups:
- National Institutes of Health
- American Medical Association
- American College of Rheumatology
- Food and Drug Administration
- Social Security Administration
- And all major insurers
The cause of the condition is not known, and there is no cure, but it can be diagnosed
Myth 2: Fibromyalgia is caused by depression.
Fibromyalgia (FM) is not caused by depression. FM is a very painful and frustrating
illness to have. FM symptoms like chronic headaches, sleep disorders, and muscle aches
and pains can make living with the illness difficult and tiresome. Lack of understanding
from the medical community, as well as friends & family members, can also make many
FM sufferers feel isolated and alone.
As a result, many people with FM experience chronic depression alongside their
illness. Depression can leave you feeling alone, anxious, and extremely sad, and
can make FM even more troublesome to deal with. It is important to recognize the
symptoms of depression so that you can seek appropriate treatment from your health
Myth 3: Fibromyalgia is a new and rare condition.
Fibromyalgia has been recognized by healthcare providers for a long time. Physicians
wrote about "muscular rheumatism," a condition involving fatigue, stiffness, aches, pains
and sleep disturbances back in the 1800's. The current term was coined in 1976.
The American College of Rheumatology set out its diagnostic criteria in 1990.
Fibromyalgia is one of this country's most common types of chronic widespread pain.
Myth 4: Fibromyalgia affects only women and older adults.
Fibromyalgia strikes both sexes and people of all ages.
2 The condition occurs in about one in 30 women. It
strikes one in 200 men. The risk of developing Fibromyalgia increases the older one
Myth 5: Fibromyalgia is Deadly.
Fibromyalgia is not life-threatening. But Fibromyalgia does have an impact on daily life.
With proper treatment, people with Fibromyalgia can see symptoms improve.
Myth 6: It is not possible to have a good quality of life with Fibromyalgia.
People with Fibromyalgia can live full, happy lives. There are tips they can follow to feel better. There are
treatments available to help manage
the symptoms of Fibromyalgia.
The understanding of fibromyalgia among the public, scientists and healthcare providers
is getting better each day. More and more research is being conducted. New treatments are
in development. The future is bright!
Myth 7: Fibromyalgia is just pain.
Fibromyalgia patients often display a variety of other symptoms such as severe
fatigue, sleep and cognitive problems, allergies, chest pain, dry eyes and
mouth, orthostatic intolerance (trouble standing), anxiety and depression. For
more information about additional syptoms click here.
Myth 8: Fibromyalgia is primarily a muscle disease.
The locus of pain in the muscles has lead FM to be wrongly characterized as a muscle
disease. Studies, however, have found few indications of inflammation or injury in the
muscles of FM patients. Most researchers now believe the pain and other problems found
in FM are primarily caused by a central nervous system dysfunction.
Myth 9: Fibromyalgia is a psychological disorder.
The early emphasis put on diagnosing FM patients using tender points singled out a
subset of primarily female patients with high rates of depression. Later studies
indicate mood disorders neither contribute to the risk of getting FM nor play a role
in its severity.
Myth 10: Fibromyalgia is a minor disease.
Disability is an unfortunate but common outcome of FM. One study found that 25% of
FM patients had received disability payments at one time.
1. Inanici F, Yunus MB. History of Fibromyalgia: past to present.
Curr Pain Headache Rep. 2004;8:369-78.
2. American Pain Society. Guideline for the Management of
Fibromyalgia Syndrome Pain in Adults and Children: APS Clinical Practice Guidelines.
2005. Series, No. 4.
3. National Institute of Arthritis and Musculoskeletal and Skin
Diseases. Fibromyalgia: Questions and Answers About Fibromyalgia. Available at:
http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp. Accessed October 26, 2008.
Fibromyalgia Myths: FM is Not, Phoenix Rising website,
http://aboutmecfs.org/Basics/FMMyths.aspx, Accessed September 28, 2010.