Must Have Books
How You Can Help
Community Newsletter #81
|Editors Corner and Contents
|This month, I want to tell you a story
about how the right words falling into the right ears can make a difference in your life
and the lives of others.
Often times we think nobody cares about our condition, or that nobody in the world listens
when we speak. So...we quit telling people how we feel when they say "How are
My story, if told well, will encourage you to continue to speak up for yourself and others
who live with pain.
My insurance coverage had changed and I needed to find a new dentist.
I made an appointment to have a check up and a cleaning. When my appointment was over I
had trouble getting out of the chair.
I struggled out of the chair and tried to hold a conversation when all I wanted to do was
get home and put some heat on my neck. The doctor, asked me what was wrong.
I am afraid I started out a bit hostile, being so used to the medical profession
disbelieving in my condition. I told her I had FM and CMP with underlying TMJ and that
laying in one place for a long time was bad for me. I told her that just getting to the
appointment was a major stressor for me. I had to wake up early, stretch, get warm, take
meds and then drive on bad, icy streets to get there. I told her everything. I am not sure
what made me feel so comfortable with her, I just was.
I left, sure my words had fallen on yet another set of deaf ears. When I returned a week
later for a scheduled appointment, I was given not only a surprise, but a gift.
Shelly not only believed me, she had done research on FM and CMP to find out how to better
take care of her patients. I was put in the chair with a roll pillow behind my neck and
another under my knees. She moved the angle of the chair so my head did not hang so far
backwards. She said all she had to do was adjust the light and she could still work just
fine. When it came time to actually work on the cracked tooth she gave me a sedative and
novacaine so I would just relax as the work was done.
So, speak up! Tell the people in your life what you need. Many of them will not listen,
but if you can reach just one person, you can change life for a lot of people. Shelley is
now taking care of FM/CMP patients in Canada in a caring manner because of her experience
~ Fatigued or just tired? There is a difference
~ Antidepressants may raise bone risk.
~ Fibromyalgia: Blowin' in the wind
~ ABC's of Fibro
~ FM, CFIDS Conference in Chicago, Illinois
~ Doctor-Patient Communication
~ Knowing the right question to ask your doctor
~ Product Recall. Homedics Heating Pad
~ Do you trust your Doctor? Sound off in our Poll.
~ Filing for Disability? You must read this.
~ An Easier Path to the Treatment of Sleep Apnea
Fatigued or just tired? There is a difference
Last Updated: 2007-02-07 8:36:07 -0400 (Reuters Health) By Megan Rauscher
NEW YORK (Reuters Health) - Being tired is not the same as being fatigued or exhausted,
and the difference matters, according to a researcher from Canada who has spent years
investigating fatigue in
"It's important to recognize the difference between tiredness and fatigue, because
fatigue is a marker that the body is not able to keep up," said Dr. Karin Olson, with
the faculty of nursing at the University of Alberta. "The onset of the manifestations
particularly if these are not normal states for you, should be taken seriously."
Olson has studied fatigue in cancer patients, people diagnosed with chronic fatigue
syndrome and depression, as well as shift workers and athletes. "These populations
were chosen because they experienced
fatigue for different reasons -- illness, work, or leisure
activities," Olson told Reuters Health.
Olson has found that the while the reasons for fatigue may vary, the descriptions of
fatigue are the same, although the kinds of adaptations required to conquer fatigue may
Based her observations, Olson created new definitions for tiredness, fatigue and
exhaustion that she believes represent various points on an energy continuum. She
describes her work in the current issue of Oncology Nursing Forum. People who are tired,
Olson explained, still have a fair bit of energy but are apt to feel forgetful and
impatient and experience muscle weakness following work, which is often alleviated by
People who are fatigued, on the other hand, experience difficulty concentrating, anxiety,
a gradual decrease in stamina, difficulty sleeping, and increased sensitivity to light.
They also may skip social engagements once viewed as important to them.
People who suffer from exhaustion, Olson has observed, report frank confusion that
resembles delirium, emotional numbness, sudden loss of energy, difficulty in staying awake
as well as in sleeping and complete social withdrawal.
Failure to recognize the difference between tiredness, fatigue and exhaustion could lead
to inappropriate approaches to combat the problem, which could make matters worse. For
example, Olson has some
evidence that while exercise may relieve tiredness, it may decrease the ability to adapt
in people who are suffering from fatigue or exhaustion.
If it's fatigue or exhaustion, caffeine and other stimulants should be avoided as these
substances fool the body into thinking it has more energy that it actually does.
Olson's advice: "Learn to recognize fatigue in yourself and those you care about --
friends, family, colleagues."
"Try to eliminate some of the life stressors, if you can, and also try to increase
your resistance to stressors." One way to do this, Olson said, is to do something
regularly that brings you joy. "It doesn't need to be big and it doesn't need to
'make sense' to others.
It's something you do for yourself because you like it. Do it every day if you can, or at
least a few times a week." It's a good lesson for today's stressed-out youth as well,
Olson said.SOURCE: Oncology Nursing Forum 2007.
Copyright © 2007 Reuters Limited.
>Antidepressants may raise bone risk
1/22/2007, 9:28 p.m. ET By LINDSEY TANNER
The Associated Press
CHICAGO (AP) The most popular pills for depression might substantially raise the
risk for bone breaks in older people, a drawback that should be considered when the drugs
are prescribed, Canadian researchers say.
People aged 50 and older who took antidepressants, including Zoloft, Prozac and other
top-sellers, faced double the risk of broken bones during five years of follow-up,
compared with those who didn't use the drugs, the study found.
Still, few of 5,008 people studied used the drugs and had fractures. While more rigorous
research is needed to prove the link, the study provides the strongest evidence yet tying
these drugs to fracture risks, said Dr. David Goltzman, an endocrinologist at McGill
University in Montreal and one of the study authors. The study was part of ongoing
osteoporosis research funded partly by the Canadian Institutes of Health Research and
makers of osteoporosis drugs.
Antidepressants have been linked with low blood pressure and dizziness leading to falls,
which can increase risks for broken bones, but the researchers said they found fracture
risks independent of those factors.
Research in animals suggests that the pills might have a direct effect on bone cells,
decreasing bone strength and size, Goltzman and colleagues said.
The results have important public health implications since millions of people worldwide
use the drugs and because osteoporosis, a bone-thinning disease that can lead to broken
bones, can be so debilitating for older adults, Goltzman said.
Still, the researchers said potential fracture risks should be balanced against the drugs'
effectiveness at treating depression, which also can be debilitating.
Depression affects about 10 percent of U.S. adults, or nearly 30 million people, including
about 7 million aged 65 and older. Depression in older adults is often missed and
"If patients need these drugs, they should not be advised against taking them because
of the fracture risk. They should however be warned about the risks," Goltzman said.
The study appears in Monday's Archives of Internal Medicine.
Some previous studies found similar results but did not adequately consider other factors,
the researchers said.
Dr. Gregory Asnis, director of an anxiety and depression clinic at Montefiore Medical
Center in New York, said depression itself has been linked with low bone density, and it's
possible the disease rather than the drugs could explain the findings. He said more
rigorous research is needed.
The drugs in question are called SSRIs or selective serotonin reuptake inhibitors. These
are generally the favored treatment for depression in many patients and their combined
U.S. sales jumped 32 percent from 2000 to 2004, to more than $10.9 billion, the
The study tracked 5,008 Canadians aged 50 and older for five years. They included 137
people who reported using SSRI antidepressants daily. In this smaller group, 18 people or
13.5 percent had bone fractures during the follow-up, compared with 317 people with
fractures or 6.5 percent among the 4,871 who didn't take the pills.
Broken forearms, ankles, feet, hips and ribs were the most common fractures.
Amy Sousa, a spokeswoman for Prozac maker Eli Lilly and Co., said the drug's label lists
osteoporosis as a potential but rare side effect. Still, she said the new study was too
small to establish any proof that SSRIs might cause fractures.
Pfizer Inc., maker of Zoloft, issued a statement responding to the study and calling
depression "a serious problem in the elderly that is under-diagnosed and
"SSRIs are an important option for the treatment of depression in this population. As
the authors note, the risks must be balanced against the benefits gained by the treatment
of depression," Pfizer said. On the Net:
>Fibromyalgia: The Answer Is Blowin' in the Wind
KEVIN P. WHITE, MD, PhD, Rheumatologist and epidemiologist, London, Ontario, Canada.
Address reprint requests to Dr. K. White, 266 Oxford Street East, #301, London, Ontario
N6A 1V1. E-mail: firstname.lastname@example.org
How many times can a man turn his head
and pretend that he just doesn't see? Bob Dylan, "Blowin' in the Wind"
These immortalized words have rung true repeatedly throughout the sordid history of
humankind. Yet it should seem startling that Dylan's words might apply to physicians, who
recite the Hippocratic Oath, and promise to ease pain and suffering and "do no
harm." Nonetheless, these words too often do apply to physicians, perhaps no more
frequently than when many such physicians are asked to deal with fibromyalgia (FM).
For those unfortunate patients who suffer from FM, "Hippocratic" often rings
more like "hypocritical." In desperation, patients turn to those learned in
Medicine and professing to help them, only to hear their malady called nothing at
all: "an illusionary entity"1, "a common non-entity"2, "mass
hysteria"3,"the syndrome of feeling out of sorts"4. Many in the medical
profession have chastised FM, calling for "a return to common sense"5 by
discarding the label, and the concept, altogether.
But why? And why are these comments so often laced with venom? Why are those who oppose
the FM concept so verbal and destructive, many going out of their way to write position
papers about an area in which they have done no research, and seem so oblivious and
impervious to the research of others?
The answer lies far beyond a lack of acceptance of a poorly understood and poorly treated
entity. We have little understanding of disease mechanisms for many well accepted
disorders, such as polymyalgia rheumatica, migraine headache, and trigeminal neuralgia.
And we have very few effective treatments for disorders such as scleroderma and ankylosing
spondylitis. Yet none of these disorders comes under the same intensely zealous scrutiny
as FM. What is it about FM that provokes such ire?
It should not be that FM symptoms all are subjective all symptoms are, by
definition, subjective6,7, irrespective of their setting. Whether caused by FM or cancer,
tendonitis or ischemic heart disease, symptoms such as pain, fatigue, nausea, and
dizziness cannot be measured objectively. We must rely on patient reports, then choose to
believe them, or not.
Some have used objective evidence of tissue pathology, such as gross swelling or
radiographic changes, as an objective proxy for pain; the corollary to this is that they
believe that the absence of objectively measurable tissue pathology is an argument against
the presence of "true pain." However, both halves of this reasoning are flawed.
Medical practice abounds with disorders in which the degree of pain and degree of
objective tissue pathology do not correlate: headache, migraine headache, trigeminal
neuralgia, phantom limb pain, kidney stones, and the Charcot joint. We cannot and should
not fool ourselves into believing that we can estimate another individual's pain. One day,
technology capable of measuring the pain of others will exist, but it does not exist
at least for use in clinical practice at the time of this writing. We all
will have to wait.
No one can reasonably justify the zealous anti-FM movement by arguing that there are no
objective physical findings among FM patients. First of all, there are many well accepted
disorders that lack objective physical findings. The same physicians who have such
difficulty understanding and accepting FM have no problems at all injecting or operating
on patients with de Quervain's tenosynovitis, medial and lateral epicondylitis, rotator
cuff tendonitis, and greater trochanteric bursitis, despite the utter absence of any
"objective" physical findings in any of these conditions. Tenderness, certainly,
cannot be considered "objective." And yet, it is one of the mainstays of
physical examination, be it of the teeth, the abdomen, the muscles, the joints, or
Moreover, should we be any less believing when we identify tenderness on examination, than
we should be when we identify alterations in sensation, cognition, or strength? Again, we
badger our medical students on the importance of examining for all of these. Why? Why,
indeed, if these "non-objective" findings are not fit to be believed anyway?
Many FM patients do have measurable alterations in skin tissue compliance and reactive
hyperemia, findings that are measurable and objective8. FM naysayers pay no attention to
this, perhaps claiming that these are nonspecific findings that, further, many patients
with FM do not have. And yet I have observed the same physicians enthusiastically gather
around them a horde of medical students to demonstrate livedo reticularis as a sign of
systemic lupus erythematosus (SLE).
The acidic reaction towards FM cannot be justified by arguing that there are no
pathophysiologic changes in FM patients. To begin with, for years there has been a large
and rapidly expanding body of scientific evidence demonstrating numerous pathophysiologic
differences between FM patients and healthy controls. As early as the late 1970s,
Moldofsky was reporting alterations in brain wave activity in Stage IV sleep, alterations
found in other chronic pain states but not in dysthymia9. These findings have been
replicated many times over, and most recent research has found that alpha wave intrusion
into Stage IV sleep is predictive of symptom severity10. How possibly could FM research
subjects manipulate these results? The answer is that they could not.
For more than 10 years, we have known of various hormonal and other biochemical changes
such as abnormal diurnal variations in corticosteroid secretion11, low serum
concentrations of somatomedin-C12 and tryptophan13, low cerebrospinal fluid (CSF) levels
of 5-hydroxytryptophan14, and high CSF levels of substance P15. More recent research has
provided a potential explanation for some of these findings, including reduced serum
activity of prolylendopeptidase (a cytosolic endopeptidase responsible for the
inactivation of a variety of algesic peptides, including substance P)16.
Thermographically measured skin temperature appears to be lower in the back17 and higher
in the hands18 in FM patients compared to healthy controls, implying some alteration in
normal dermal sympathetic activity in FM. More recent research has shown further evidence
of altered autonomic nerve function in response to orthostatic stress19. Two small recent
studies suggest an alteration in the pattern of cerebral blood flow20,21, which may help
to explain the debilitating fatigue and cognitive difficulties described by these
patients. The list of scientifically demonstrated physiologic abnormalities in FM patients
goes on and on. Detailing them all is far beyond the scope of this editorial. Nonetheless,
this research exists and no critic should verbalize his or her opinions without performing
an educated and unbiased review of it.
Through all this research, FM has become the prototype chronic, systemic pain disorder,
much the way that SLE is the prototype chronic, systemic autoimmune disorder. Scientists
who accept that we have much to learn about pain have learned much, much of this knowledge
coming from studying FM. Such knowledge has been attained by reaching beyond the
oversimplistic, grossly anatomic view of the world to which so many of us seem confined.
Some argue that these pathophysiologic irregularities are not specific for FM. But this,
also, is not a valid argument against the acceptance of FM. If it were, we would be forced
to question the validity of an almost endless number of otherwise well-accepted disorders
for which all pathophysiologic changes are nonspecific. Foremost among these would be SLE.
The positive predictive value of the detection of antinuclear antibodies (ANA) is no
greater than one percent, which makes the testing for ANA 50 times less predictive than
the flip of a coin. In addition, not one of the many other pathophysiologic abnormalities
of SLE is specific to SLE. Does SLE not exist? How about rheumatoid arthritis (RA)?
Polymyalgia rheumatica (PMR)? The list goes on.
Claiming that FM is psychological is no defense either. When are we going to finally
discard the outdated concept that psychological and physical illnesses are opposites? A
huge body of research tells us that psychological and physical ill health move in tandem.
What chronic illness does not affect us psychologically? Are newly diagnosed cancer
patients not psychologically distraught? What about recent stroke victims? Does this make
cancer and stroke psychological diseases? Of course not. The reality is that chronic
physical illness begets chronic psychological distress, and vice versa. Numerous research
studies have demonstrated alterations in physiologic function including immune response in
those who are depressed22-25. The dramatic increase in mortality in the year following the
death of a spouse26-28 is poignant evidence that psychological distress affects us
physically. This is all part of the biopsychosocial understanding of illness, a concept
that is far better supported by current research than the biomedical model so many of us
were taught in medical school.
Moreover, so-called "psychological disorders" are not without physiologic
changes. Physiologic changes have been identified in and pharmacologic treatments
justified for numerous psychiatric diagnoses including schizophrenia, major depression,
bipolar disorder, obsessive-compulsive disorder, and attention deficit hyperactivity
disorder, to name a few. As such, the distinction between physical and psychological
illness becomes increasingly meaningless. The distinction between a physical symptom and a
psychological one becomes more blurred. What is important is that all such patients are in
distress, and that physicians can help (or hinder) if they so choose.
Our hateful disregard for FM also is not defendable by arguing that the FM label is a
distinctly poor one, although it is true that the FM label may be flawed. The tautologic
(round-about) method by which FM was defined in 199029 (collecting a group of individuals
believed to have FM and then looking for characteristics that distinguish them from those
believed not to have FM) is the same scientific method that has been used to develop
classification criteria for every other disorder (including SLE and RA) for which they
exist. What other method might be employed in the absence of a gold standard confirmatory
test? And what possible justification could there be to develop classification criteria
for a disorder in which a gold standard confirmatory test already exists? The answer to
both of these questions: there is none.
The FM label, like those of SLE, RA, and many other disorders, may be tenuous. But that
may just be the nature of the diagnostic labeling process itself. The myth in medicine
that we have 999 diseases is a myth. The truth is that we have 999 labels. Some of these
labels, such as pneumococcal pneumonia or gout, work very well. FM, SLE, RA, PMR, and many
other disorders that fall under the rheumatic disease umbrella are not well labeled.
Nonetheless these labels do serve many purposes. Certainly, there is very little
discussion about discarding the SLE label, or the RA label, or the PMR label. Why must we
discard the FM label?
Despite arguments to the contrary, there is no evidence that the FM label is any more or
less useful than those of SLE and RA. The most oft-used argument has been that the FM
label is harmful by creating illness behavior and disability, causing individuals to take
on a "sick role" and behave as if they are ill19,28,30,31. But this argument is
flawed at both ends.
First, as has been shown repeatedly in controlled studies of FM patients versus controls,
these people are ill. As stated earlier, the FM cohort differs physiologically from the
normal population, in many instances in a physiologically predictable way. One would
expect individuals reporting high levels of pain to have higher levels of neurotransmitter
pain agonists in CSF, and FM patients do15. One would expect individuals reporting
nonrestorative sleep to have electrophysiologic alterations in deep sleep, and FM patients
do9. In fact, as stated earlier, the number of alpha wave intrusions in Stage IV sleep is
highly correlated with daytime symptoms10. Hence, this cohort of patients with symptoms of
illness and pathophysiologic changes consistent with illness, irrespective of their
specificity, must be considered ill. Can you truly tell an individual complaining of
feeling hot and having a core temperature of 43°C that they are not ill because fever is
not a specific finding?
And second, recently published research in a prospectively followed, representative
community cohort of adults newly diagnosed with FM found that the FM label itself does not
cause worsened future outcome32. These individuals did not act more ill. They actually
reported fewer symptoms over time. They did not use more health services. And the majority
Hence, the FM label is flawed, admittedly. But it does not stand out in this regard.
Numerous other diagnostic labels, such as SLE and RA, are equally flawed. Should they be
discarded as well?
Perhaps the most volatile concept inducing venomous responses against FM is that of
disability. This issue has not only medical, but also strong medicolegal implications.
Some have argued that the only reason that FM exists is that an overly generous
compensation system is in place that is ripe for the picking by individuals who claim to
be too ill to work. (It takes no imagination at all to see how this anti-FM agenda might
be pushed aggressively by those health care providers among us whose incomes come largely
from performing independent medical evaluations for insurance companies.) However,
evidence now exists to rebut even this contention.
The recently published study in which FM was found to be even more prevalent among Amish
than non-Amish populations should serve as an antidote against such venom. Moreover, the
finding of FM in the Amish should not be considered surprising. Previously published
general representative (randomized) population studies have demonstrated FM to be more
common in countries in which compensation availability might be expected to be less (for
example, Pakistan33, Poland34, and South Africa35) than in countries in which compensation
availability might be expected to be greater (Sweden36, Denmark37, Finland38).
Nonetheless, the venomous attacks continue39,40. One author even insinuates that the
motives of the Amish Study investigators were purely political, and hence the results
might somehow have been manipulated41. And yet, the same author seems to take no exception
to the endless armchair philosophizing of so many who have claimed, while making no
attempt to gather any evidence to support their contentions, that FM is a
Why? Why is FM unrelentingly held up to a level of scrutiny to which no other
musculoskeletal disorder is held? Some authors, such as Ehrlich, Hadler, and A.S.
Russell42*, (*Not to be confused with I.J. Russell, who has contributed greatly to our
current understanding of FM through thoughtful, innovative research.)seem to have made a
career out of writing opinion papers chastising FM, while publishing virtually no research
at all to support any of their claims. Why? Why do those who belittle the concept of FM
offer virtually nothing more of an argument than their own feeble versions of "common
sense," while repeatedly ignoring a huge and ever-growing body of evidence supporting
I cannot answer for those who choose to utilize their positions of influence in this way.
Nor can I answer for those who are much less verbal, but who choose to believe the
armchair critics while exercising no effort to explore the research literature for
themselves. But I believe that soon, the evidence supporting FM will become so
insurmountable, so undeniable, that even the most violent FM-beaters will have to relent.
The answer is blowing in the wind and soon it will be felt. Technology ultimately will
catch up with reality and will prove FM doubters wrong. We will be able to see and measure
FM, in the clinical setting, just as relatively recent technological advances now allow us
to measure hypothyroidism without goiter and relapsing-remitting multiple sclerosis, 2
conditions whose pasts are not entirely unlike fibromyalgia's present. Hypothyroidism
without goiter: how possibly could this have been diagnosed or conceptualized before we
could test levels of thyroid function? These women were just middle-aged, overweight, and
lazy or so it was thought. Relapsing-remitting multiple sclerosis: until the advent
of magnetic resonance imaging and other technologies, these women were dismissed as being
psychologically disturbed or malingerers, complaining of odd neurological symptoms like
blindness and dizziness and drunken gait, yet appeared virtually neurologically intact on
Let FM not be another tragic example of letting ill-informed, malicious logic derail
conscientious, methodical attempts to gradually discover the truth.
To quote Bob Dylan again: "How many ears can one man have before he can hear people
>ABC'S of Fibro
ACCEPTANCE - of consequences and boundaries of your new reality.
BALANCE - in all areas of your life.
CHANGE - ancient wisdom holds that the only thing that's certain is change.
DENIAL - the first stage of reaction to any sudden, unexpected, unpleasant
EXERCISE - do what you can...with what you have... and where you are.
FATIGUE - rest your mind as well as your body.
GENTLE - with your movements.
HUMOR - smiles, laughter, and a sense of humor... help in the healing
IMAGERY - great way to escape pain and fatigue for a brief time.
JOURNAL - a written record of symptoms...weather...emotions...helps identify
KNOWLEDGE - learn all you can about Fibromyalgia.
LIFE style changes - ongoing process
MANAGEMENT of medications
PACE - conserve energy...set priorities
QUIET place to relax.
SLEEP -develop good sleeping habits.
TESTS - a fact of FMS living.
USE - the largest muscle for the task.
VOICE - your needs.
WELLNESS - attitude and lifestyle.
XANADU - "an idyllic, beautiful place"....imagine your self in one for
YARE - means "to be ready or prepared"... don't let a flare creep up on you.
ZEAL -"enthusiastic and diligent devotion in pursuit of a cause, ideal, or
>Fibromyalgia, Chronic Fatigue Syndrome Conference in Chicago, Illinois USA
In Observance of Chicago Fibromyaglia Awareness Month, FACES announces the long awaited
return of the Super Bowl of Fibromyalgia Conferences.
This year, the champions of football are quaranted to come from the Midwest. This year,
the champions of Fibromyalgia are coming to the Midwest.
Join the Fibromyalgia Association Created for Education and Self-help [commonly known as
FACES, Inc.] at the 2007 Midwestern Fibromyalgia/Chronic Fatigue Syndrome Conference:
"Crossing the Chronic Pain and Fatigue Bridge to Move from Victim to Victor".
Friday May 18 - Sunday May 20, 2007
Holiday Inn Matteson
500 Holiday Plaza
Your invited to click here to download a two page conference highlight http://www.fibrocop.org/Images/pdf/Conference%20Highlights.pdf.
A full attendee registration booklet can be downloaded by clicking here http://www.fibrocop.org/Images/pdf/Registration%20Brochure.pdf
There will be an exhibitor's hall. Feel free to click here to download an exhibitor's
prospectus and pass on to your favorite health care provider, legal advisor or
Fibromyalgia/CFS friendly businesse or service.
Please pass these links onto family members, employers, healthcare providers, attorneys,
social service providers, funders, and other people with Fibromyalgia, Chronic Fatigue
Syndrome or similar conditions. This conference is open to the general public, you do not
have to be a patient from the midwest to attend.
Conference Planning Committee
P. O. Box 528504
Chicago, Illinois 60652-8504
Voice Mail (773) 936-4183
Fax (773) 581-3209
Stephen Barrett, M.D,
Intelligent consumers should locate and use a primary physician (or medical group) who
provides care that is scientific, considerate, and compassionate. They should take an
active role in dealing with health professionals. They should endeavor to understand the
nature of any health problem they experience and the mechanisms and potential hazards of
treatment. They should not hesitate to ask questions about fees or request consultations
for complicated problems.
When consulting a doctor, try to present a detailed and well-organized account of present
symptoms and relevant past history. Before contacting the doctor, it may help to draw up a
list to guide your presentation. If there is more than one problem, start with the most
important one. If you have a particular concern, bring it up at the beginning of your
visit. If medications are being taken, either write down their names and dosages or bring
the original bottles to the appointment. Since patients typically forget much of what they
are told in a doctor's office, taking notes or utilizing a tape recorder (with the
doctor's permission) might be helpful.
Physicians know much more about medicine than lay people do but are not always good
communicators. They may be authoritarian or even patronizing. Patients should not accept
this behavior. Consumers have the right to be partners in their care and to receive a
clear explanation of the physician's findings and proposed treatment. There is no good
reason why a physician cannot provide this. A friendly comment that you want to be able to
follow the physician's advice properly usually establishes the desired relationship.
It is important that feelings of fear, embarrassment, or even resentment not be permitted
to create a barrier between patient and physician. Put these feelings to good use by
sharing them with the physician. Someone who fears an examination or is shy about body
parts should say so. Discomfort during an examination is something else the physician
wants to know about. If the physician makes a sound or comment that causes concern, ask
what it means. Don't let fear or embarrassment stop you from mentioning a symptom or a
problem that is bothering you. If you wish to discuss something you do not want to appear
in your medical record, ask the doctor not to write it down.
If you have doubts about a diagnosis or treatment plan, voice them. If a particular
treatment is objectionable, the physician may be able to suggest an acceptable
alternative. If necessary, a consultation with another physician should be requested.
Similarly, if the physician suggests consultative action, the patient should appreciate
this concern and be receptive to the proposal.
Some consumer advocates recommend questioning doctors closely about the need for
diagnostic tests and about alternatives to whatever treatment is proposed. However,
challenging everything is likely to antagonize the doctor and could result in dismissal as
a patient. The best approach is to select a doctor who makes sensible and cost-effective
recommendations without prodding. Questions can then be used to enhance your understanding
rather than trying to outthink the doctor.
Be sure to have a clear understanding of fees involved. This matter is usually handled by
Proper telephone use can do a great deal to make the physician's life easier while helping
the patient to receive better service. Before calling the office, take a moment to
organize your thoughts. What is the problem? When did it begin? If there is a pain, does
it come and go or is it steady? Does anything bring it on or relieve it? If there is an
infection or any other reason to suspect a fever, the temperature should be taken. Try to
decide whether the problem is urgent. Before calling, write down a one-sentence
description of your problem, your reason for calling, a symptom list, and no more than
three questions that you may have.
Most physicians receive many more calls than they could possibly handle alone. So when you
call, don't start by asking to speak with the doctor. In a well-run office, the
receptionists and nurses are trained to assemble the information needed for a preliminary
evaluation of the situation. These people usually know which matters to handle alone and
which ones the physician must handle personally. After talking to a receptionist or nurse,
if you still believe it is necessary to speak with the physician, that is the time to ask.
When you telephone, have a pad and pencil handy to write down any instructions. Human
memory is notoriously faulty. Call early in the workday when the physician's assistants
are on duty and hospitals and laboratories are able to give their best services. That way
the problem can be handled most efficiently. Emergency calls and cancellations should be
made as early in the day as possible. Calls about less urgent matters could be delayed
until mid-morning to avoid the period during which the staff is extra-busy preparing for
the day's work.
When calling for a prescription refill, know the phone number of the drugstore. The
request should be made during the physician's office hours and before you are down to the
last pill. That way the physician can review the office record to see whether the
medication is still needed, whether the dosage should be changed, and so on. Such a review
makes medical care safer. If you telephone outside of office hours, many physicians
(especially those covering another's practice) order only enough medication for a few
days. That is the safest way in the absence of medical records, but it does increase the
cost of medication.
Remember, good medical care should be a partnership between patient and physician.
>Knowing the right question to ask your doctor
Fact: A doctor in this country interrupts a patient, on average, in the first 18 seconds
of a visit.
A prominent surgeon waited about a minute and a half before issuing his diagnosis to
Jerome Groopman on his damaged hand. "He was dead wrong," says Groopman, who got
four diagnoses from six surgeons. "And these are big names."
Fact: More than 15 percent - some say more than 20 percent - of medical diagnoses are
wrong. At least half result in serious injury or death.
Groopman tells of a woman who saw close to 30 doctors for a constellation of ailments that
gradually sapped the life out of her. She endured excruciating pain and was down to 85
pounds. Her immune
system was failing and she had developed severe osteoporosis. All of them missed what was
Finally, a fresh doctor asked a fresh set of questions. He listened to her and found that
she suffered from a gluten allergy that prevented her from receiving the nutrients in the
food she ate. After years of agony, she quickly recovered.
Fact: More than a quarter of all radiological tests, including CAT scans and MRIs, are
isread. "Misdiagnoses are not rare at all," says Groopman, the noted oncologist
and chief of experimental medicine at the Beth Israel Deaconess Medical Center, who
While the patient safety movement has led to major improvements in protocols to avoid
systems errors, he points out, nothing has been done to address a more profound issue: how
doctors think. And bad
thinking is what causes countless mistakes. "No one talks about this stuff,"
He is struck by the lack of independent thinking among the residents he leads on hospital
rounds. "These are really smart people, and when asked for a diagnosis they download
cookbook recipes on their computers," he explains. "If it's not that, they look
blankly. How do
I teach them how to think? I realized I didn't know how I think. No one ever taught me how
Groopman addresses this touchy subject in a book, "How Doctors Think," due out
this spring. In it are examples of bad thinking, including plenty of his own, that
produced harrowing results. None of this is news to patients. Most of us know someone who
has endured a
misdiagnosis or have done so ourselves. My friend Barbara went through a year of agony
because of one.
Groopman's first child developed a persistent low-grade fever and stomach pain at nine
months. A doctor said not to worry, it's just a virus. The child's condition deteriorated,
but the doctor remained unmoved. Eventually, Groopman and his wife rushed their son to an
emergency room, where they learned the child had an intestinal obstruction that would have
killed him had it gone untreated.
What went wrong here?
The doctor sized up Groopman and his wife as neurotic first-time parents and built his
diagnosis around that premise. At work, says Groopman, were two suspects common in these
The first is what he calls anchoring - where a doctor interrupts you, seizes on a symptom
or complaint, and declares, "It's this." This snap judgment anchors all ensuing
The second he calls attribution, to which women are particularly vulnerable, where
assumptions about a patient are attributed to bad data.
Groopman tells of a woman with a newborn child and two young children who complained about
constant nausea and diarrhea. "The doctor looked at her and decided it was stress,
that she was neurotic," Groopman said. "So he attributes all of her complaints
the stereotype he has in his mind. I saw her a few months ago. She had been diagnosed with
a tumor in her intestine but had been taking Zoloft for a year and a half."
Time is an insidious agent in all this. "In today's medical environment, the clinic
is a factory," he says. "It's a world of eight-minute visits. The mistakes are
made in the moment. Doctors draw immediate diagnoses rather than listen and pursue leads.
when complaints persist, they all too often cling to their first thought and even discount
"It's impossible to figure out a difficult problem in eight
minutes," he said. "A doctor has one eye on the clock and one eye on a computer
screen as he types notes. The truth is, you can't think well in haste.
"There is no generic best treatment to a serious problem," he says: "We
delude ourselves to think the answer is the systems solution - 'We'll give you an
algorithm: if it's A then B then C.' You're got to
know what A is in the first place. And sometimes you have to go past C."
Many in the medical community will bristle at Groopman's findings. Others will recognize
the truth in what he says and, with luck, a few of the bean counters controlling medicine
today as well. They can't
dismiss the book. It is meticulously researched and written by a physician of stature.
"One solution for misdiagnosis is a patient or family member who knows how doctors
think," Groopman said.
So what should we be asking our doctors, over and over?
What else could it be?"
>HoMedicsand FDA notified consumers and healthcare professionals of a
nationwide recall of 292,108 heating pads produced by HoMedics and shipped within the
United States in 2001 and 2002. Some of the heating pads contain an inadequate connector
crimp, which can lead to a high resistance connection that may generate excessive heat.
This can pose a risk of minor or first degree burn injuries, fire or damage to the heating
pad itself or to materials (like bedding and furniture) that come in contact with the pad.
Consumers who have any of the heating pads should discontinue use of the product and
return it immediately to the retailer of purchase for a full refund. See recall notice for
specific HoMedics Heating Pad Model Numbers.
Read the complete MedWatch 2007 Safety Summary, including links to the
Manufacturer's press release regarding this issue at: http://www.fda.gov/medwatch/safety/2007/safety07.htm#heatpad
Do you trust your Doctor?
Do you believe they are doing all they can for you? Sound off in the FMS Community's
opinion poll. We will share the results in a future newsletter.
Filing for Disability? You must read this.
Helping Fibromyalgia Patients Obtain Social Security Benefits by Joshua W. Potter, Esq.
Mr. Potter walks you through the entrire process from beginning to end. He explains the
system, the forms, timelines and pitfalls. He also guides you to the proper way to fill
out forms and communicate with your team to achieve a successfull application.
Read the entire article at http://fmscommunity.org/potter.htm
An Easier Path to the Treatment of Sleep Apnea
Diagnosis: An Easier Path to the Treatment of Sleep Apnea By ERIC NAGOURNEY
People who have obstructive sleep apnea know how hard it can be to adjust to the breathing
apparatus used to treat it. But just getting a diagnosis poses its own
challenges, generally requiring two nights hooked up to wires in a sleep laboratory.
Now researchers say there is an easier way that allows some patients to stay at home.
Instead of going to a laboratory, patients who are good candidates for an apnea diagnosis
are given treatment right away, with portable equipment being used to assess their
Writing in the current Annals of Internal Medicine, the researchers say the method can
speed up diagnoses and treatment for those with the disorder, which causes people to wake
up repeatedly when they stop breathing. The condition can lead to fatigue, high blood
pressure and other health problems.
Patients thought to have sleep apnea are usually sent to specialized centers to be
evaluated. Only after that are they given machines that send air into the lungs while they
sleep, known as C-PAPs. But the visits are expensive, the waiting lists are long, and many
people do not live near a sleep center.
For the study (see http://www.annals.org/cgi/content/abstract/146/3/157
), the researchers screened patients to come up with a group they considered at least 90
percent likely to have the condition. The patients were then given either a standard
evaluation at a laboratory or an at-home one, with C-PAP use beginning immediately. When
the patients were re-examined, researchers found that those who went to the laboratory did
no better than the other patients, said Dr. C. Frank Ryan of the University of British
Columbia, the senior author of the study. The lead author was Alan T. Mulgrew of the
Vancouver Public Health System in Canada.
FAIR USE NOTICE
This site contains copyrighted material the use of which has not always been specifically
authorized by the copyright owner. We are making such material available in our efforts to
advance understanding of environmental, political, human rights, economic, democracy,
scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of
any such copyrighted material as provided for in section 107 of the US Copyright Law. In
accordance with Title 17 U.S.C. Section 107, the material on this site is distributed
without profit to those who have expressed a prior interest in receiving the included
information for research and educational purposes. For more information go to: http://www4.law.cornell.edu/uscode/17/107.html.
If you wish to use copyrighted material from this site for purposes of your own that go
beyond 'fair use', you must obtain permission from the copyright owner.