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FMS COMMUNITY NEWSLETTER # 51
May 22, 2002
Editors: Mary McKennell and Anne-Marie Vidal
Editor's Corner: I have the privilege of joining Mary McKennell as
co-editor of this newsletter and working with Chip, Nancy, Tigger and
Turnip. My name is Anne-Marie Vidal and some of you may know me from
writing that I have done at various sites over the years. For several
years my CFIDS, FMS, Rheumatoid Arthritis, Epilepsy and Asthma got the
better of me and I was unable to go much further than the lobby of my
apartment building. In the two years I have had 6 back epidurals, 3 neck
epidurals, a spinal fusion and a laminectomy. The spinal fusion and
laminectomy helped me to put away my crutches and walk unassisted,
something I am enjoying immensely. However, I remain in chronic
unrelenting pain (like many of you.)
I have a great husband, so supportive that he took early retirement from
a job he enjoyed and moved from Brooklyn, N. Y. to Albuquerque, N.M.
with me as we sought a dryer climate for my health. It worked! Away
from, the dampness of New York, I am doing better.
If you ever want to know what it is like to move 3 cats, 12 years of
marriage, and a doll collection 2000 miles, I will be glad to try to
make you see the lighter side of relocation. The hard part is leaving
friends and family to start over in a new locale. You will miss them
greatly despite email and wonderful long distance plans. However,
slowly you do start a new life and you do keep going.
Keeping on with your life and your routine is very important for your
own well being, especially with chronic illness. We are in a constant
fight to not let the illness take too much away from us and for that
reason, we must be mindful that FMS and CFIDS Awareness are not a day,
week or month events. But truly a state of mind, one that we should
have all year round while we educate people as to what these invisible
chronic illnesses really are.
One of the articles in this newsletter "Fibromyalgia, to Diagnose or
Not: Is that Still the Question?" contends that the Diagnosis of
Fibromyalgia creates a mindset of illness. Dr. Wolfe who previously
defined the criteria for FMS now feels not only that the
illness is over diagnosed but that it encourages people to become
patients for reasons other than illness. Clearly, a lot of educational
and awareness challenges remain before us.
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Advanced Pain Management Techniques: An Overview of Neurostimulation
Philip Kim, MD
Introduction Neurostimulation is the application of precise targeted
electrical stimulation on nociceptive pathways. Electric stimulation has
a long history in medicine for treating various ailments. Beyond the
application of electrodes on the skin such as in transcutaneous
electrical nerve stimulation (TENS), electrodes have been applied
directly to nociceptive pathways.
The nociceptive pathways are made up of tracts in the central and
peripheral nervous systems. The central nervous system includes
nociceptive pathways in the spinal cord and brain, specifically the
dorsal roots, dorsal ganglion, spinothalamic tracts, and all ascending
neural tracts to the cerebrum. The peripheral nervous system includes
pathways outside the spinal cord, specifically various plexuses and
Components of the System Spinal cord stimulation involves the placement
of an electrical system to block nociception. The system comprises the
surgical placement of epidural electrodes, cables, and radiofrequency
transmitter or battery. Much of this method has evolved from cardiac
pacemaker technology. The minimal invasiveness and trialing has led to
the success of this approach. Neurostimulation can be placed during an
outpatient procedure, with local anesthesia and sedation. The patient
experiences minimal discomfort when the system is placed and during the
Before the system is placed, a simple trial of percutaneous lead
placement can be performed. In this case, the patient goes home with the
lead connected to a screener box. No incision is necessary and the
procedure is performed using only local anesthesia. The purpose of the
trial is to determine the effectiveness of the stimulation for relieving
pain and improving the patient's quality of life. If this temporary
method allows the patient to sleep better, use less pain medication, and
sit and stand longer, then it becomes more convincing to place an
internalized spinal cord stimulation system.
Mechanism of Action The mechanism of action of spinal cord stimulation
is based on the placement of epidural electrodes along the dorsal
columns. Originally, spinal cord stimulation was called dorsal column
stimulation. It is thought that spinal cord stimulation works through
the gate-control theory of Wall and Melzack, which theorizes that
stimulating large nerve fibers (A beta fibers) can inhibit or modulate
smaller nerve fibers (A delta or C fibers), transmitting nociceptive
input possibly at the dorsal root or horn of the spinal cord.
Strategically placed epidural electrodes stimulate the dorsal columns (A
beta fibers) to inhibit or modulate incoming nociceptive input through
the A delta or C fibers. Ongoing research suggests that spinal cord
stimulation may inhibit transmission in the spinothalamic tract,
activation of central inhibitory mechanisms influencing sympathetic
efferent neurons, and release of various inhibitory neurotransmitters.
Pain Conditions Spinal cord stimulation can be applied to treat
neuropathic pain conditions, including arachnoiditis, complex regional
pain syndrome (formerly called reflex sympathetic dystrophy),
neuropathies, brachial and lumbosacral plexopathies, radiculopathies,
deafferentation syndromes, phantom limb pain, and postherpetic
neuralgia. Clinical studies and 30 years of clinical experience have
continued to show efficacy in these conditions. Visceral syndromes such
as interstitial cystitis, chronic abdominal pain, and chronic
pancreatitis have been treated with limited success.
Intractable pain caused by peripheral vascular disease and angina can be
treated with spinal cord stimulation. Indeed, in Europe, the primary
indication for spinal cord stimulation once was peripheral vascular
disease. The success of stimulating the lower extremities may be based
on microvascular blood flow changes via alterations in sympathetic
outflow. It could also be that one is treating a concurrent ischemic
neuropathy in the lower extremities.
Limited success of spinal cord stimulation may depend on the extent of
peripheral vascular disease. Based on one study, spinal cord
stimulation does not reduce the incidence of amputation in the lower
extremities. The same rationale for using spinal cord stimulation for
treating peripheral vascular disease is now being applied in clinical
trials of patients with intractable angina, including those with patent
coronary vessels who continue to have intractable angina and patients
who are not candidates for coronary bypass and stent procedures. It is
theorized that these patients have a neuropathic condition and
microvascular blood flow deficiency.
Some painful conditions cannot be stimulated along the spinal cord and
therefore are not responsive to spinal cord stimulation. Thus,
peripheral nerve and plexus stimulation has evolved as a complementary
neurostimulation approach. The mechanism of peripheral nerve and plexus
stimulation is unclear since the electrodes are not stimulating the
dorsal columns. Some postulate that a variation of the gate-control
theory is involved at the peripheral nervous system level. Moreover,
peripheral nerve stimulation may activate central structures leading to
inhibition of various nociceptive pathways, similar to the way
acupuncture results in somatosensory cortex activation.
Clinical Trials Current clinical trials and experience have involved 3
different patient groups. First, intractable headaches caused by
neuropathies of the trigeminal and occipital nerves may benefit from
neurostimulation. Trigeminal neuralgia is a painful constant condition
for which neurodestructive neurolysis may not work. Neurostimulation of
the actual trigeminal ganglia has been performed. Stimulation of various
branches of the trigeminal ganglia, such as supraorbital and
auriculotemporal nerve, has been performed with limited success. Ongoing
clinical research is under way on occipital nerve stimulation;
electrodes are placed percutaneously and surgically along these nerves
at the subcutaneous occiput level. The peripheral nerve stimulation
system is placed in a manner similar to the spinal cord stimulation
Second, stimulation of the sacral nerves or lumbosacral plexuses can be
beneficial for painful conditions resulting from chronic abdominal,
pelvic, genital, and anal pain syndromes. Specific conditions that have
been treated include interstitial cystitis, coccydynia, pyelonephritis,
pancreatitis, rectal fugax, and vulvodynia. These perplexing syndromes
are difficult to treat in significant part because we lack a complete
understanding of what perpetuates them. Procedures allowing access to
sacral and lumbosacral nerves include a retrograde epidural approach and
a sacral transforaminal approach.
Third, some peripheral neuropathies, neuromas, and plexopathies are
difficult to stimulate along the spinal cord and may not respond to
spinal cord stimulation. Surgically or percutaneously placed electrodes
along nociceptive pathways have been performed with success. The most
common sites are along the ulnar, median, common peroneal, and saphenous
Conclusion Neurostimulation of the central and peripheral nervous
systems is playing a vital role in the treatment of various intractable
pain conditions, including conditions for which we have limited
pathophysiologic understanding, such as complex regional pain syndrome.
Until we develop treatments that truly eliminate pain, neurostimulation
can play a major role in improving the quality of life for pain
patients. These systems do not damage neural pathways and could be
removed when curative therapy becomes available.
As patients and their physicians become aware of the benefits of these
techniques for managing intractable and difficult-to-treat pain
syndromes, more people may be interested in undergoing this kind of
treatment and will achieve improvements in the quality of their lives.
The comedian Jerry Lewis lives with intractable low back pain and has
attributed his spinal cord stimulation system with giving him his life
back. Hopefully, he will continue to talk about his life and persuade
others that they don't have "to live with it [pain]."
Philip Kim, MD, Medical Director, Center for Pain Medicine Pain Center,
St. Francis Pain Center, Wilmington, Delaware
Disclosure: Philip Kim, MD, has disclosed that he has served as a
consultant for Medtronic.
Medscape Neurology & Neurosurgery 6(1), 2004. C 2004 Medscape
Current Opinion in Rheumatology
Multidisciplinary Team Care and Outcomes in Rheumatoid Arthritis
Thea P.M. Vliet Vlieland
Abstract and Introduction Abstract Purpose of review: Comprehensive
rehabilitation, involving a team of health professionals from various
disciplines, is widely used as an adjunct to pharmacological and
surgical treatment in patients with rheumatoid arthritis (RA). Studies
on the effectiveness and costs of such programs, as well as on
developments regarding outcome measures and quality improvement in this
particular field are reviewed. Recent findings: Recent studies confirm
that defined day patient multidisciplinary programs are equally
effective as inpatient team care programs. It appears that similar
effects, at lower costs, may be achieved by clinical nurse specialists
coordinating multidisciplinary care in an outpatient setting. With
respect to outcome measures on effectiveness of multidisciplinary team
care, the use of function-specific and patient-oriented outcome measures
is advocated. Moreover, the use of tools and procedures to enhance the
role of the patient in the team care process and communication among
health professionals may yield important leads for the improvement of
the effectiveness and quality of multidisciplinary team care. Summary:
Comprehensive inpatient and day patient programs prove to be equally
effective in patients with rheumatoid arthritis, while the employment of
alternative forms of comprehensive care, such as care coordinated by a
clinical nurse specialist, is promising. With respect to future
research, challenges are related to the development and selection of
adequate outcome measures, the enhancement of mutual communication, and
a further definition and extension of the role of the patient in the
team care process.
Introduction Comprehensive multidisciplinary team care programs for
people with rheumatoid arthritis (RA) are aimed at improving overall
functioning on the level of body functions and structures, activities,
and participation.[1,2] Although control of disease activity is a major
goal, rehabilitative targets hold a prominent place in multidisciplinary
team care programs. In the rheumatology setting, rheumatologists,
rehabilitation specialists, occupational therapists, physical
therapists, social workers, nurses, podiatrists, dieticians,
psychologists or psychiatrists, vocational counselors, and orthopedic
surgeons are the disciplines that are most often represented in the
team. An important hallmark of multidisciplinary team care is the team
conference, during which individual treatment goals and treatment plans
are defined, evaluated, and attuned.
Despite the widespread use of multidisciplinary team care facilities in
the therapeutic approach of patients with RA, studies on their
effectiveness and costs are scanty. The purpose of this review is to
list the recent literature on the effectiveness and costs of
comprehensive multidisciplinary team care programs in patients with RA.
Only studies on multidisciplinary team care programs that comprised
various nonpharmacological therapeutic interventions were considered for
this review. In addition, new insights into the multidisciplinary team
care process and its evaluation are discussed.
Thea P.M. Vliet Vlieland, Leiden University Medical Center, Department
of Rheumatology, and University of Professional Education, Leiden, The
Curr Opin Rheumatol 16(2):153-156, 2004. C 2004 Lippincott Williams &
Evidence for and against the use of opioid analgesics for chronic
nonmalignant low back pain: a review.
Department of Neurology, Mayo Clinic, Rochester, Minnesota.
Opioid analgesics are very effective for treating
pain, but their chronic use in nonmalignant conditions is controversial.
Low back pain is a common condition, and chronic low back pain (CLBP) is
the most frequent regional pain syndrome in the United States. This
article reviews the evidence for and against the use of chronic opioid
analgesic therapy (COAT) for patients with CLBP unrelated to cancer.
Methods. A literature review was conducted looking for reports of oral
or transdermal opioid analgesic therapy for CLBP.
Results. There are very few randomized controlled trials of COAT for
CLBP. The scant evidence that is available suggests that over the
short-term, COAT is helpful with patients with CLBP.
In the published reports, most of which are brief in duration, COAT is
associated with moderate side effects but a low risk of abuse or drug
addiction. COAT was not associated with adverse long-term sequelae.
Longer-acting opioid analgesics may be preferable to shorter-acting
Patient selection and close follow-up are critical to good outcomes.
Conclusions. There is a place for the use of chronic oral or transdermal
opioid analgesics in the treatment of some patients with CLBP.
PMID: 15099261 [PubMed - in process]
Dr. Bruno's FATIGUE Lecture -- SUNDAY, JUNE 13
UNDERSTANDING & TREATING FATIGUE:
The Polio Connection by Dr. Richard L. Bruno
Understanding the cause and treatment of Chronic Fatigue Syndrome,
Fibromyalgia, fatigue in multiple sclerosis and Parkinson's disease
through the lens of polio and Post-Polio Sequelae.
SUNDAY, JUNE 13
2:00 PM TO 4:00 PM
Pascack Valley Hospital
Old Hook Road
Westwood, New Jersey
Dr. Richard L. Bruno will discuss the cause and treatment of Chronic
Fatigue Syndrome, Fibromyalgia, fatigue in multiple sclerosis and
Parkinson's disease -- plus the new West Nile "polio"-- from the point
of view of his 20 years of study and treatment of polio survivors with
Post-Polio Sequelae (PPS) are the unexpected and often disabling
symptoms -- overwhelming fatigue, muscle weakness, muscle and joint
pain, sleep disorders -- that occur in polio survivors about 35 years
after the poliovirus attack.
This is Dr. Bruno's only planned metropolitan area speaking engagement
Dr. Bruno is Director of Fatigue Management Programs and The Post-Polio
Institute at New Jersey's Englewood Hospital and Medical Center. He is
also author of The Polio Paradox: Uncovering the Hidden History of
Polio to Understand and Treat "Post-Polio Syndrome" and Chronic
Fatigue (Warner Books, 2002). Click on "Post-Polio Letter" at
for Dr. Bruno's papers
describing his research and treatment of PPS and CFS.
SEATING IS LIMITED! PLEASE REGISTER BY JUNE 7 BY CONTACTING:
Nancy Visocki PHONE: 201-439-0704 firstname.lastname@example.org
Revised Pain Management Guidelines Target Inadequate Pain Control: A
Newsmaker Interview With James N. Thompson, MD
Laurie Barclay, MD
April 5, 2004 - Editor's Note: Recognizing that undertreatment of pain
is a public health priority, the Federation of State Medical Boards
(FSMB) of the United States, Inc., is recommending a revision of
guidelines stating that undertreatment of pain, like overtreatment, is a
A panel of medical board representatives, experts in pain management and
addiction medicine, and state and federal government representatives
convened by the FSMB recently reviewed suggested revisions to the Model
Guidelines for the Use of Controlled Substances for the Treatment of
Pain. Inspired by new insights in pain management, especially regarding
the undertreatment of pain, the revised guidelines will be submitted to
the FSMB's House of Delegates in May for consideration as policy. Since
the original guidelines were released in 1998, more than 300,000 copies
have been distributed nationally and adopted in whole or in part by 22
state medical boards.
How should the revised guidelines shape current practice in pain
management? To find out, Medscape's Laurie Barclay interviewed James N.
Thompson, MD, president and chief executive officer of the Federation of
State Medical Boards in Dallas, Texas.
Medscape: What was the rationale for the FSMB recommending a revision of
guidelines regarding pain treatment?
Dr. Thompson: Over the last decade, there has been a great deal of
progress made in our understanding of pain and how to better manage it,
especially regarding the undertreatment of pain. There is a significant
body of evidence suggesting that both acute and chronic pain continue to
be undertreated. Many terminally ill patients suffer needlessly in their
last weeks of life. The revised guidelines encourage state medical
boards to recognize that the treatment of pain is a fundamental part of
Medscape: What do the revised guidelines recommend?
Dr. Thompson: The guidelines address the inadequate management of pain
and barriers that stand in the way of patients getting appropriate
treatment. These barriers include a lack of knowledge among some
physicians on what appropriate pain management entails. Another obstacle
is a fear some physicians have that they'll be investigated by
regulators if they prescribe controlled substances for pain.
The guidelines also encourage state medical boards to consider the
undertreatment of pain as much of a violation of the standard of care as
other kinds of prescribing violations.
They also stress the need for government to develop a system that
prevents abuse and diversion of controlled substances while
simultaneously ensuring they are available for legitimate medical
purposes. And the guidelines also update definitions of addiction,
chronic pain, and physical dependence to reflect current consensus and
expertise in the medical community.
Medscape: Are these guidelines likely to vary from state to state?
Dr. Thompson: More than likely, yes. While the guidelines do provide the
states a blueprint to follow so that there is some consistency from one
jurisdiction to the next, each state adopts policies in accordance with
the needs of its residents. Twenty-two states have adopted all or part
of the current version of the Federation's model guidelines on pain, and
nearly all states have some sort of policy, position statement, or
statute about appropriate pain management. I think the states will move
to address both the issues of abuse and undertreatment. The wording of
how they do this will, of course, vary from state to state, but in
general we believe they will come close to reflecting the intent of the
Medscape: Which states have begun disciplining physicians for
undertreatment of pain, and how is this likely to affect regulatory
conduct in other states?
Dr. Thompson: To date, California and Oregon have disciplined doctors
for the undertreatment of pain. I anticipate that we will see this
number grow in the future as more and more states specifically address
undertreatment in their statutes.
Medscape: How can physicians and regulatory agencies best balance the
need to treat pain associated with terminal illness or other intractable
conditions with the need to prevent addiction, abuse, and diversion of
Dr. Thompson: Our hope is that these guidelines will help state medical
boards and physicians treating pain to achieve that kind of balance. The
physician who follows these guidelines should not have any problems with
their state medical board. The guidelines don't interfere with the
practice of medicine, but assure physicians they aren't at risk of being
scrutinized by state medical boards if they follow good medical
practice. The guidelines set forth good practices to follow when
treating pain, such as documentation of records and communication of
risks and benefits of medication to the patient. But they don't tell a
doctor or patient how their pain is to be treated. If a physician
follows these guidelines they should be free from regulatory scrutiny.
Reported May 17, 2004
Fatigue Problems for Gulf Veterans
(Ivanhoe Newswire) -- A new study from the State University of New York
at Buffalo and University of Medicine and Dentistry of New Jersey in
Newark shows that chronic fatigue syndrome in Gulf War veterans may be
attributed to both genetic and environmental factors.
Researchers found chronic fatigue syndrome is nearly four-times as
common in veterans of the first Persian Gulf War as in non-veterans. It
can last more than six months and can cause a decrease of activity,
rheumatological and neuropsychiatric symptoms, or brain changes
affecting the mind.
During this study, researchers collected blood samples from nearly 130
healthy veterans, nonveterans, and veterans suffering from chronic
According to the research, veterans with fatigue were found to have the
D variant in the angiotensin-converting enzyme (ACE), a genotype that
affects performance and endurance. Veterans with the DD genotype were
also eight-times more likely to develop chronic fatigue syndrome than
the other patients.
The authors conclude, "These results suggest that there may be an
interaction between these genetic variants and some factor unique to
deployment to the Persian Gulf. If they are supported by future research
examining veterans of different wars and war zones, it may be that
variants of the ACE gene could be a biological marker for increased risk
of war-related illness."
This article was reported by Ivanhoe.com, who offers Medical Alerts by
e-mail every day of the week. To subscribe, go to:
SOURCE: Published online at Wiley InterScience
Fibromyalgia: To Diagnose or Not. Is That Still the Question?
05-12-2004 Source: J Rheumatol. 2004 Apr;31(4):633-5.
DON L. GOLDENBERG, MD
Chief of Rheumatology
Suite 304, 2000 Washington Street
Newton, Massachusetts 02462;
Department of Medicine
Tufts University School of Medicine
Boston, Massachusetts, USA.
The August 2003 issue of The Journal presented 3 editorials, each
declaring that the diagnosis of fibromyalgia (FM) should be
abandoned(1-3). Drs Ehrlich, Hadler, and Wolfe have no issues with the
irrefutable fact that a large proportion of the population, up to 30% in
some community surveys, report widespread pain. They would also agree
that the great majority of these individuals have no structural disease
to account for their pain. What disturbs them is the FM diagnosis
itself, the label given to the subset of people with idiopathic
generalized pain who often are referred to rheumatologists. Is the FM
diagnosis disabling or enabling?
Diagnostic labels for syndromes manifesting subjective symptoms have
always been controversial. Fifty to seventy percent of primary care
visits are related to symptoms that cannot be explained by any
disease(4). Most of these symptoms are self-limited, but millions of
people suffer with chronic, unexplained pain, headaches, fatigue, or
bowel complaints. Each medical specialty has its own functional, somatic
disorder diagnosed solely by subjective symptoms, with no definitive
laboratory or structural abnormalities and prominent psychosocial risk
Ehrlich contrasts FM to migraine headache, which is a "well defined
condition with exacting criteria. "Yet the operational criteria for FM
have been as carefully crafted and validated as those for migraine.
Classification criteria for each of these functional syndromes are
designed to distinguish the specific syndrome from another illness with
similar symptoms. The FM diagnostic criteria have been demonstrated to
do just that.
Underlying the disdain for the diagnosis of these syndromes, which
include FM, is the notion that such individuals exaggerate the normal
strains of everyday living because they do not cope well with
psychosocial stressors. Ehrlich imagines that FM does not exist in rural
areas since "chronic complainers are not well tolerated" and "people get
on with their lives"1. There is a gender bias of comments such as "all
manner of associated symptoms or nonsymptoms become prominent when the
individual focuses on herself and discomfort (and it is mostly women who
fall into this category)"(1).
Hadler suggests that the diagnostic label of FM and chronic fatigue
syndrome (CFS) medicalize symptoms, thus promoting symptom magnification
and excess somatic concerns(2). However, the single study designed to
test that hypothesis found that the FM diagnostic label did not have a
negative influence on clinical outcome(5). The health status of patients
with FM was compared before diagnosis (prelabeling) and after the
diagnosis (postlabeling). Newly diagnosed cases reported fewer symptoms
and were more satisfied with their health. No differences in health
service occurred postlabeling.
Hadler believes that "people choose to be patients because they have
lost their wherewithal to cope." He believes that FM is a social
construct that will simply go away if we stop using the diagnosis for
people's misery. Editor Duncan Gordon is not surprised that some
rheumatologists refuse to see patients with FM(6). Similarly,
gastroenterologists may not diagnose or treat people with irritable
bowel syndrome (IBS), or neurologists may not wish to see patients with
Social, cultural, and political factors are important in every chronic
illness. A diagnosis of FM can be exploited for personal or societal
gain. It is not the diagnosis of an illness, but rather how that label
is applied that results in "turning diseases into commodities"1. This is
just as prominent in disease labels such as hypertension as it is in
syndrome labels such as FM. The diagnosis of hypertension resulted in
increased work absenteeism when it was not accompanied by information
and explanation about the meaning of high blood pressure(7).
Ehrlich decries that the diagnosis of FM promotes support and advocacy
groups that aggravate the problem1. Certainly, if zealous, biased
leaders of advocacy groups dominate for their own interests rather than
"support," harm can occur. This is not unique to FM. Both Drs. Ehrlich
and Hadler believe that the FM diagnosis certifies the disability
complaints so rampant in FM and "turned a common symptom into a
remunerative industry." However, even in tertiary referral rheumatology
centers where the most "treatment-resistant" FM patients are seen,
disability claims are present in only 10% of cases(8). This is no
greater than for people with chronic neck or chronic back pain.
It is not the illness label that results in such claims, but rather
inaccurate illness attributions. In contrast to the term "post-traumatic
FM," the FM label, like the label of headaches, irritable bowel, and
chronic fatigue syndrome, is descriptive, not implying causation.
Clinicians have no business using labels such as post-traumatic FM,
tension headaches, postinfectious CFS, or post-dysentery IBS unless
there is evidence to support a causal connection.
Hadler's argument that FM is simply a social construct ignores 25 years
of clinical observations and research. Such a narrow-minded view of
depression was common during the past century. Psychiatry has more
recently applied useful and validated diagnostic classifications based
solely on symptoms. This has resulted in basic research breakthroughs
and important therapies.
The FM diagnostic label has provided a common language for investigators
to explore biologic as well as psychosocial factors and to appreciate
the overlapping features of FM, CFS, migraine and muscular headaches,
IBS, and depression. Forty to eighty percent of patients with FM and 60
to 90% of patients with the CFS meet criteria for IBS(8,9). Similar
central nervous system pain perception and neuroendocrine alterations
have been reported in FM, IBS, chronic headaches, and CFS8,(9).
Techniques such as brain imaging and genetic analyses have provided a
greater understanding of the interplay of physical and emotional pain so
prominent in FM(10).
Ehrlich says, "people labeled to have FM are given 'a hopeless
prognosis'". Hadler believes that this "unhappy fate" of people labeled
to have FM is a result of "the treatment acts, dripping with empty
promises of elucidation and unproved promises of palliation, [which] are
iatrogenic." Despite these ominous remarks, most patients with FM
respond well to a combination of education and treatment(11).
The FM diagnosis has allowed clinicians to evaluate a large variety of
medicinal and nonmedicinal therapies. Numerous randomized clinical
trials and metaanalyses confirm that medicinal and nonmedicinal
therapies are effective in FM(11-13). One report from Australia
involving patients seen in a primary care practice found that the
majority of patients responded well to simple therapeutic approaches,
and one year after the diagnosis one-quarter of the patients no longer
met the criteria for FM(12). In a 3-year longitudinal, prospective
study, 50% of 70 women with FM reported moderate to marked
Dr. Ehrlich comments that diseases such as tuberculosis, cancer, or
rheumatoid arthritis exist, whether they are diagnosed (i.e., labeled)
or not. In contrast, "no one has FM until it is diagnosed." Yet Ehrlich
agrees that the "pain is real." So what do we call it? And how do we
treat it? Ehrlich declares "One cannot really treat non-diseases." He
implies that all we need to do is reassure patients that there is
nothing really wrong with them, pat them on the back, and send them on
their way? That may work for some people, but for most, an illness label
is necessary and useful. Cassell comments, "If you do not make the
diagnosis, you cannot relieve the suffering"(14). The diagnosis simply
implies that a person experiences something wrong. The absence of
disease does not mean that a person is not ill.
A sense of hopelessness follows when people are told they are "worried
well." Helplessness will result from telling someone they have FM but
that there is nothing to do about it. Often people with FM have been
told that they suffer from chronic bursitis, tendonitis, or structural
malalignment and are treated inappropriately. Explaining that FM is not
a structural injury precludes such a scenario. The FM diagnosis should
halt countless referrals and costly, unnecessary medical tests.
Wolfe wants us to stop using the American College of Rheumatology (ACR)
criteria for FM in the clinical setting(3). But the clinical setting is
exactly where classification criteria should be used. As he points out,
the ACR criteria were designed as a working-case definition. As such,
they work well. What concerns Wolfe is the diagnostic utility of tender
points as "the essential criterion." In the clinic and in the some 1500
reports devoted to FM in the past decade, it has been made clear that FM
is not "mostly a physical illness." The ACR FM classification criteria
have not resulted in rheumatologists treating FM as "mostly a physical
illness." The efficacy of medicinal and nonmedicinal therapies in FM has
been demonstrated by improvement in symptoms and function, not by a
change in the number of tender points.
Operational criteria for syndromes like FM provide a foundation for
exploring each person's symptoms. Most people who meet classification
criteria for FM, chronic headaches, or IBS never see a physician. They
probably will never be given a syndrome diagnosis. However, without
classification criteria clinicians will never understand why some of
these people become patients. The diagnostic label allows clinicians to
evaluate risk factors for illness chronicity and severity. For example,
the number of painful regions, severity of fatigue, and psychosocial
factors, in particular mood disturbances, correlate with FM
Once the diagnosis of FM is established, physicians do not need to
constantly be on the lookout for hidden diseases. We can then get to
know the person, explore factors such as illness attributions, work
issues, and psychosocial stressors. In the future, multidisciplinary
therapies designed to address these individual illness risk factors will
be the most successful(17).
If illness labels such as FM are perceived as frameworks to approach
poorly-understood chronic syndromes such as FM, healthcare professionals
can establish a caring and nonconfrontational relationship, unencumbered
by causal or pathologic illness attributions. A syndrome label reassures
the physician and patient that there are many people with similar
symptoms in the absence of disease. Patients uniformly have felt that a
diagnosis and belief in their illness was beneficial. Often, this is in
contrast to their health care professionals who are uncomfortable with
these diagnostic labels.
Ninety percent of patients with CFS reported that getting a diagnosis
was the single most helpful event in the course of their illness(18).
However, 60% of their doctors had been reluctant to diagnose CFS because
of the scientific uncertainties with the disorder. A diagnostic label
signals to the patient and family that the doctor takes their problem
seriously. The complaints are considered real, in contrast to what some
have thought about FM.
The rheumatology community should heed the plea from Wessely, "we have
hopefully moved away from the tedious and repetitive rhetoric that pits
the 'it's real' against the 'oh no it's not' lobbies which produce much
heat and little light"(19).
April 27, New York Times
Drug Makers Hope to Kill The Kick In Pain Relief
By SANDRA BLAKESLEE
Worried that millions of Americans are using prescription opiate
painkillers to get high rather than to ease severe chronic pain, drug
makers are working on ways to prevent abuse.
Cooperating closely with government officials and pain specialists, the
companies are educating doctors, rewriting warning labels and tracking
pills as they move from pharmacy to patient.
They are also reformulating pills with added ingredients. One
combination blocks euphoria. Another produces a nasty burning sensation.
''The problem of prescription painkiller abuse is much bigger than
people realize,'' said Dr. Clifford Woolf, director of the neural
plasticity group and professor of anesthesia research at Massachusetts
General Hospital in Boston and Harvard Medical School.
''No other drug type in the last 20 years had been so abused in such a
short period of time,'' he said. ''It's an epidemic.''
According to the Substance Abuse and Mental Health Services
Administration, more Americans abuse prescription opiates than cocaine
and the abusers far outnumber those who misuse tranquilizers,
stimulants, hallucinogens, heroin, inhalants or sedatives. After
marijuana, pain pills are the drug of choice for America's teenagers and
How modern painkillers came to be abused is a story of good intentions
gone awry. The painkilling action of the opium poppy has been known for
thousands of years. Misuse of painkillers also has a long history. A
century ago, mothers routinely rubbed tincture of opium on the gums of
teething babies to soothe the pain, then took a nip for themselves.
If the medicine was not locked up, other family members often helped
themselves. Indeed, the problem got so bad that makers of paregoric, the
most popular liquid opiate, added camphor to their formulations to set
off a gag reflex.
In recent decades, doctors stopped prescribing opiates because 5 to 10
percent of people who took them became addicted.
Fear of addiction led to the undertreatment of pain and to untold
suffering, said Dr. Russ Portenoy, chairman of the department of pain
medicine and palliative care at Beth Israel Medical Center in New York.
The 50 million Americans with chronic pain needed help. It arrived five
or six years ago when pharmaceutical companies put very large doses of
opiates into slow-release formulations. A person who swallows such a
pill feels no euphoria but is relieved of pain for up to 24 hours.
The new painkillers were heavily marketed to primary care physicians,
Dr. Portenoy said. It was thought that the drugs would not be abused
because addicts would not be tempted by sustained release painkillers.
Unfortunately, addicts quickly found that they could grind the pills,
swallow or snort the powder and get a high dose of opiates delivered
directly into their bloodstreams. They also liked the fact that the
drugs were pure and the exact dosage was known.
To counter abuse, drug makers are developing ways to reformulate
prescription painkillers. Purdue Pharma in Stamford, Conn., which makes
OxyContin, is thinking of adding a second drug, called an opiate
antagonist, that neutralizes the effects of the opiate.
The antagonist would be walled off using polymers or some other
sequestering technique, said Dr. David Haddox, the company's vice
president of health policy.
A patient who swallowed the drug would get full pain relief, as
intended. But if someone tampered with the pills, the antagonist would
Then, Dr. Haddox said, one of two things would happen: ''If you are a
recreational drug user, you feel nothing. The effect is canceled out.
''Why abuse something that has the same effects as a glass of water?''
''But if you are physically dependent,'' he continued, ''you get no
euphoria and it might cause withdrawal. You'd get a double whammy.''
A second approach is to mix in a chemical irritant like capsaicin, the
main ingredient of hot chili peppers, said Dr. Woolf, who has a patent
on the idea.
Because the esophagus and stomach do not have many receptors for hot
peppers, patients could take the pills as prescribed and find relief, he
said. But the lining of the nose and cheeks are loaded with pepper
receptors, and anyone who ground up such a pill would get a burning
feeling in the chest, face, rectum and extremities, as well as
Reformulations are a promising avenue, but there are risks.
''We want to make sure that a patient who has need of an opioid does not
suffer side effects from a second drug for which he or she has no
need,'' Dr. Haddox said.
''We need to make sure the antagonist doesn't leak,'' he added.
Approaching the problem from another direction, drug companies and the
federal authorities are trying to educate doctors and crack down on
doctors who, for whatever reason, dispense painkillers inappropriately.
The Food and Drug Administration, Dr. Portenoy said, is going after
doctors who are ''duped, dishonest, disabled or dated.''
For example, the agency is re-labeling prescription painkillers to warn
primary physicians of the risks involved. Some doctors, he said, are
using the new drugs for broken fingers rather than devastating chronic
New labels are also being introduced to tell doctors how to recognize
patients who may be prone to abuse -- those with a personal or family
history of alcohol or prior drug abuse or mental health problems like
bipolar disease, for example -- and if the doctor is suspicious, how to
monitor those patients with urine tests or other methods.
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