Please note that most links
presented, are off site links, save where noted.
Fiction: Fibromyalgia
is a new disease.
Fact: Symptoms
similar to Fibromyalgia were described in the 1700's. It was called fibrosis
in 1904, and renamed Fibromyalgia in the 1980's
Fiction: There
is no cure for Fibromyalgia
Fact: There is
no cure ... yet ! Assuming there is none, makes it a sure bet that no one
will bother trying to find one.
Fiction: FM is
not life threatening
Fact: FM is not
directly life threatening in and of itself, but the cumulative damage done,
effects life expectancy.
Fiction: Fibromyalgia
cannot be diagnosed through blood tests, X-rays or muscle biopsies
Fact: Only partly
true. Not with the typical lab work that is currently used, no, but in
actuality, yes it can. This is done, one, via special testing, but such
is generally done in a research setting that is far beyond your typical
lab setting. Furthermore, there is a blood assay, APA
Assay,
intended for general lab use, which detects an abnormal immune system responses,
which has been available for quite some time (1999 is the date on the original
press release ), however, its availability is not common knowledge, and
most certainly it is not in common use. There has been extensive testing
done on the assay, and it has shown itself to be a reliable indicator of
FM. The reasons for the medical professions failure to apply it or make
use it, are unknown. So saying it cannot be diagnosed with lab work, is
misleading.
Fiction: Fibromyalgia
is caused by deconditoning, and they just need to get some exercise.
Fact: Most FM
suffers were very physically fit, active people, when the disease struck,
and were not in any way deconditioned. Research indicates that anyone who
is "cured" of FM by an exercise regime alone, were often misdiagnosed,
and were found to be suffering from clinical depression and other disorders,
which mimic many of the signs of FM, which has lead to this common fallacy.
"The limbic system
plays an important role in regulating the body's stress response, and under
normal circumstances, one would expect to cause the following (from doing
an exercise bicycle stress test):
increase in temperature
increase in cortisol
production
increase in growth
hormone production
increase in catecholamines
(norepinephrine and epinephrine)
increase in cerebral
blood flow
None of the above
predictions occurred in the CFS/FMS patient population! In fact, both temperature
and cerebral blood flow decreased with exercise -- the opposite of what
one would expect. ... "
"No association
was noted between improvement in aerobic fitness, as measured by VT, and
the improvement of pain, function, or scores ... aerobic exercise is beneficial
to patients with FM overall, but the possible cardiorespiratory fitness
gain is not related to any notable improvement of FM symptoms."
Aerobic
fitness effects in Fibromyalgia. J Rheumatol.
Fiction: People
with Fibromyalgia exaggerate their pain.
Fact: The pain
is twice the severity, and life impact, of rheumatoid arthritis. Journal
of Rheumatology
Fiction: Having
a diagnosis makes the condition worse, as you are now labeled as "sick"
and therefore, "act" sick.
Fact: We were
sick long before we got any diagnosis. A diagnosis is a relief to most
people, for the simple reason, we now know what we are dealing with and
generally improve as a result, rather than decline.
Fiction: FM is
an Adjustment disorder
Fact : An Adjustment
Disorder is an abnormal and excessive reaction to an identifiable life
stressor, beginning within three months of the onset of an identifiable
stressor and lasts no longer that six months after the stressors have ceased.
There is no identifiable stressor in FM and its effect is a duration of
years.
Fiction : Fibromyalgia
is a diagnosis only reached by exclusion, meaning if you rule out everything
else, it must be FM
Fact: In 1990,
The American College of Rheumatology and many others, scientifically established
the diagnostic criteria for FM. The need to rule out other conditions,
is a fact, as FM signs, mimic other aliments, that might otherwise be missed,
if not investigated. However, this is not needed for a diagnosis of FM.
Fiction: People
with FM are just looking for sympathy.
Fact: In order
to garner sympathy or pity, one requires A: an audience and B: persons
who are disposed to give sympathy. Those with FM, feel just as much pain
and difficulty, even when they are alone. ( James and Hawser, Pain in Private,
hidden camera studies, and others ) Persons with chronic pain, tend to
hide their pain, rather than display it. Most people are not sympathetic
to invisible illness. "Our society encourages denial of all things unpleasant,
especially those we fear or cannot readily understand." Katrina
Berne
Fiction: You look
fine, you must be fine.
Fact: Over (133
million) people in American, has a chronic condition, 93% of which, have
disabilities not visible to the naked eye.
Fiction: Fibromyalgia
is not a disabling condition.
Fact: The rate
of disability for fibromyalgia patients may be as high as 44 percent or
more, according to the Arthritis Foundation.
Fiction: People
with Fibromyalgia sought their diagnosis.
Fact: 75% of
people diagnosed with Fibromyalgia, had never heard of the disorder, prior
to the date of their diagnosis.
Fiction: Fibromyalgia
is a psychiatric problem.
Fact: The percentage
of FM patients who suffer with depression
on site link, is no higher than for any other chronic illness. Depression
is a by product of the disorder, not the cause. "The majority of patients
didn't have depression in the years before they became ill." FM
news
"Research studies
have revealed a number of biological abnormalities, including:
Decreased blood
flow to specific areas of the brain, particularly the thalamus region,
which may help explain the pain sensitivity and cognitive functioning problems
experienced by Fibromyalgia patients.
High levels of
“substance P,” a central nervous system neurotransmitter involved in pain
processing.
Low levels of
nerve growth factor.
Low levels of
somatomedin C, a hormone that promotes bone and muscle growth.
Low levels of
several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
Low levels of
phosphocreatine and adenosine, muscle-cell chemicals. " Karen
Lee Richards
None of these
physical changes happen in psychiatric conditions, but consistently occur
in persons with FM.
Fiction: Fibromyalgia
is a fatal condition.
Fact: There have
been no reported deaths directly related to FM itself. It is to be noted
however that those with FM, have a higher than normal suicide rate, which
stands at over nine times the national average, at 26.1 %, The normal figures
for the general population, is 2.9% Research
Fiction: Only
women get Fibromyalgia.
Fact: Recent
research suggests that 1 in 8 Fibromyalgia patients is male. And that figure
is considered low and is under challenge, it is postulated the real numbers
are closer to one out of three. Men's
Stories
Fiction: Fibromyalgia
only affects older adults.
Fact: FM does
effect, teens, young
adults, and children.
Fiction: The best
medicines for FM are anti inflammatory drugs.
Fact: FM is not
an inflammatory condition, so such medications are of little value. If
any pain reduction is noted, it is likely arthritis or another inflammatory
conditions pain, that is being reduced. "Non-steroidal anti-inflammatory
drugs (NSAIDS – pronounced en-seds) and corticosteroids are two types of
medications often used to treat many forms of arthritis. However, neither
has been shown to be useful in treating fibromyalgia." The
Arthritis society
Fiction: Fibromyalgia
is very rare.
Fact: Fibromyalgia
is a very common disorder, affecting more than 8-10 million people in the
United States. Currently over 30% of the persons seen in your average rheumatologists
office, are being seen for FM.
Fiction: Fibromyalgia
is a form of arthritis.
Fact: While many
people with FM have some form of arthritis, it is not FM. Fibromyalgia
is a neurological disorder that is often seen in tandem with arthritis,
lupus and other joint, muscle problems. According to the National
Institutes of Health, fibromyalgia is not truly a form of arthritis
but is considered an arthritis related condition and a rheumatic disease,
with regard to it's classification.
Fiction: FM does
not progress or worsen.
Fact: "No one
goes to bed one night healthy, and just wakes up with FM", so of course
there is a progression. Those with FM are often diagnosed in middle age,
but research shows, that the signs and symptoms were there, but unrecognized,
long before the final diagnoses is finally reached, ergo, it has increased
in severity, until it becomes apparent, what is wrong.
Fiction: You can
exercise Fibromyalgia pain away.
Fact: "Any program
involving sustained aerobic activity that induces cardiovascular debt or
strenuous muscular exertion such as weightlifting, can seriously damage
sufferers of Fibromyalgia and Chronic Fatigue Syndrome... Damage to the
Autonomic Nervous System in patients with Fibromyalgia and CFS mean that
energy production via the Sympathetic Nervous System in response to exercise
is impaired. More importantly, removal of toxins and lactic acid produced
by the muscles in response to exercise via the lymphatic and venous systems
is seriously compromised, and as a result causes toxic overload and rapid
symptomatic decline after exercise. This results in the "post-exertional
malaise" that Fibromyalgia and CFS sufferers who have attempted an exercise
regime WILL have experienced." Mark
J Shaw.
Fiction: You just
have to learn to live with the pain, There's nothing that can be done.
Fact: This is
a statement from a doctor who does not know enough, or care enough to help
you, find another physician.
Fiction: Giving
pain killing medications to someone with chronic pain, is courting addiction.
Fact: "Studies
have shown that the fears of patients becoming addicted are exaggerated,
and do not justify failure to relieve pain. Patients who are in pain, and
are being medically managed, are receiving treatment for a specific reason,
and do not become addicted" Bruce
R. Canaday "
"No evidence supports fear of addiction
as a reason for withholding narcotics when they are indicated for pain
relief. All studies show that regardless of doses or length of time on
narcotics, the incidence of addiction is less than 1%." Devin
Starlanyl
Fiction: Chronic
pain is just a normal part of the aging process.
Fact: "The presence
of pain in older adults is not normal, and should be treated with the same
aggressive approach that is used for younger people." AARP
Fiction: A person
who does not complain of pain, must not have pain.
Fact: People
do not report pain for many reasons. They may not want to be a burden to
their families or care givers. Very often however, according to reports
and surveys, pain sufferers feel they will not be believed, or their complaints
have been met with scorn or derision in the past, so they stop reporting
them. Chronic
health conditions
Fiction: Fibromyalgia
and Myofascial pain on site link, are one in the
same thing.
Fact: While most
with FM do have CMP, and they are commonly seen together, they are not
the same condition, and have to be treated separately. CMP pain differs
from FM in that it is localized, rather than defuse, fatigue is not a factor,
and the trigger points can be resolved, with proper treatment.
Fiction: Trigger
points and Tender points are the same thing
Fact: Trigger
points are CMP( on site link ) points, VS Tender
points, the points used for diagnostics in FM. They are not the same thing.
Fiction: Any pains
or symptoms you feel when you have FM, is your FM.
Fact: Having
FM does not confer immunity from other conditions. Dismissing any new pains
or signs, could cause both the patient and the doctor to ignore major health
warning signs. Any new pain or condition should be investigated thoroughly.
Fiction: Patients who complain of fibromyalgia
pain, despite treatment, are just seeking drugs.
Fact: Less than half of the patients
with fibromyalgia achieve adequate pain relief with medications, and this
includes when given narcotics. "Opioid pain killers work by binding to
opioid receptors in the brain and spinal cord ... Patients with fibromyalgia
were found to have reduced binding ability of a type of receptor in the
brain, that is the target of opioid pain killer drugs such as morphine.
Science
Daily
Furthermore, most persons with FM, who,
in the early stages, have often tried many or even all, of the current
day medications typically given for FM, often stop taking any of
them. They do so, due to the medications failure to improve their symptoms
or pain, and as noted, this often includes narcotics. FM
and pain management on site link
Fiction: People with FM are just faking
it.
Fact: "Double blind studies have found
that rheumatologists could dependendably tell the difference between people
who truly had fibromyalgia, and those who were given an incentive, and
the detailed directions, on how to fake the symptoms."
Fiction: The drug Lyrica, is a new drug,
and was developed for FM.
Fact: Lyrica (pregabalin), is not new,
it was developed and approved in December 2004, for the treatment of neuropathic
pain in Diabetes and Shingles. It is also used to control peti mal
seizures.
It is the first drug that has ever been
approved
for use in Fibromyalgia directly, by the FDA, but it was not developed
for FM. It has proved, thus far, not to be very effective for FM in real
life trials, but the jury is still out on it.
All medications, currently given for
FM, were developed for other purposes, and their use in FM is classed as
"off label" use. There are no medications to date, that have been developed
for Fibromyalgia specifically.
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