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FMS Community Newsletter #25 Monday, July 22, 2002 Subscription update: 1742
subscribers and 29 new subscribers. Welcome!
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Editor's note: The FMS community newsletter
will now be published on the second and fourth Monday of each month. Thanks for
your patience with the erratic publication schedule of the last two months.
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Members of the FMS community have
generously contributed in order to keep the site and newsletter running, but we
still need your help.
Please help keep the FMS Community alive by making a contribution if you are
able; any amount will help. Please go to http://www.fmscommunity.org/contributions.htm
to see how you can pitch in.
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Featured link: What works for managing
CFIDS and fibromyalgia?
Get some answers in an eight-part series of articles beginning this week. The
series offers some practical ideas from the over 500 people who have taken our
self-help course in recent years, sharing what they have found useful in living
with long-term illness. You'll learn what fellow patients have found helps them
in areas such as pacing, achieving goals, controlling symptoms, reducing and
preventing stress, managing emotions, improving relationships and minimizing
relapses.
Check it out: http://www.cfidsselfhelp.org AOL users: <a href="http://www.cfidsselfhelp.org">Read
it here</a>
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This week's news:
1) Mind-body management of FMS symptoms
2) IBS Resource Center now online
3) New SSDI guide available
4) Nonpharmacologic management strategies in fibromyalgia
5) Does Gender Affect the Opioid Response?
6) Does the label "fibromyalgia" alter health status, function, and health
service utilization?
7) MS Discoveries Edge Closer to Cure
8) An Association of Silicone-gel Breast Implant Rupture and Fibromyalgia
9) UGH! Head Pain Season in Full Bloom
10) Gulf War Syndrome Information
11) How to get your anger under control
12) First step in beating depression is admitting it
13) New Subtype of Cluster Headache Identified
14) Not All Multivitamins Pack the Same Punch
15) WRITE NOW: Maintaining a Creative Spirit While Homebound and Ill
16) Water workouts: A cool way to exercise
17) Nutrition tips for when you lose your appetite
18) Non-dipping in diabetic patients: insights from the siesta
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1)
Mind-body management of FMS symptoms
Although the cause of fibromyalgia (FM) is unknown, many experts believe it may
be rooted in central nervous system or neuroendocrine abnormalities. Russell
Rothenberg, M.D., and Daniel J. Clauw, M.D., discuss symptom management, causes,
triggers and treatments, while Joan E. Broderick, Ph.D., explores mind-body
medicine for the management of FM.
Check it out:
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3724 AOL users: <a
href="http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3724"> Read it
here</a>
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2)
IBS Resource Center now online
Irritable Bowel Syndrome affects as many as one out of five adults, and
treatment continues to pose a challenge to physicians. Medscape has developed
the Irritable Bowel Syndrome Resource Center, a collection of the latest medical
news and clinical information on this disease with an emphasis on approach to
management.
Editor's note: You must register with Medscape to view this article.
Check it out: http://medscape.com/mp/rc/usmd/ibs AOL users: <A href="http://medscape.com/mp/rc/usmd/ibs">Read
it here</a>
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3)
New SSDI guide available
Now available from the National Fibromyalgia Partnership:
A PRACTICAL GUIDE TO PERSEVERING & WINNING YOUR CHRONIC PAIN/FATIGUE DISABILITY
CASE, BY SCOTT DAVIS, ESQ. (Compiled and distributed by the National
Fibromyalgia Partnership)
Scott Davis, Esq., is one of the nation's foremost experts in representing
clients seeking Social Security Disability based on a diagnosis of fibromyalgia
and/or chronic fatigue syndrome and other chronic pain conditions.
This publication is now included in the NFP's Social Security Disability
Information Packet, a public service information packet, made available to the
public for $8.00 (price includes postage).
Payment may be made by check or money order (payable to NFP, Inc.) or by
Visa/Mastercard. U.S. dollars only.
To order, write: NFP Inc., P.O. Box 160, Linden, VA 22642-0160 USA. Fax credit
card orders to: 866/666-2727 (toll-free). Also available in the NFP Online Store
at: www.fmpartnership.org.
AOL users: <a href="http://www.fmpartnership.org">Read it here</a>
Also available: Article by Mr. Davis on whether you need an attorney Check it
out: http://www.immunesupport.com/library/print.cfm?ID=3713 AOL users: <a
href="http://www.immunesupport.com/library/print.cfm?ID=3713">Read it here</a>
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4)
Nonpharmacologic management strategies in fibromyalgia
Rheum Dis Clin North Am 2002 May;28(2):291-304 Burckhardt CS.
School of Nursing, SN-5N, Oregon Health and Science University, 3181 SW Sam
Jackson Park Road, Portland, OR 97201, USA. mailto:burc-@ohsu.edu PMID: 12122918
Clinicians using the results of the extant research base can take an optimistic
view of the role of nonpharmacologic treatment strategies for fibromyalgia.
There were no negative outcomes in any of the reviewed studies, although in a
few studies the experimental treatment did not prove to be more effective than
the attention control.
Rather than viewing this negatively, one could look more closely at the
attention control groups and attempt to better understand what they contained
that worked as an active treatment. A number of trials include a follow-up
component and all but one of them find maintenance of at least one outcome
change.
Maintenance of changes is more likely to occur when the patient continues to
participate in the experimental activity long-term.
Patients especially need strategies that help them continue in exercise
regimens.
Unlike cognitive skills strategies that once learned are likely to become part
of a person's coping repertoire, both exercise and behavioral strategies, like
progressive muscle relaxation, need to be performed on a consistent basis in
order to have their effect.
The goals of increased self-efficacy, symptom reduction, increased functional
status and quality of life along with decreased inappropriate use of health care
resources are realistic when patients persevere in their use of strategy
combinations and receive support from their providers.
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5)
Does Gender Affect the Opioid Response?
Among the controversies over opioid therapy is the issue of whether a person's
response to opiates is influenced by gender. Are men more sensitive to opioids
than women? Roger B. Fillingim, PhD, moderated a symposium entitled "Sex
Differences in Responses to Opioid Analgesics."[1] Presenters reviewed animal
research, human research, and possible mechanisms responsible for sex
differences in opioid responses.
Check it out: http://www.medscape.com/viewarticle/433603 AOL users: <a
href="http://www.medscape.com/viewarticle/433603">Read it here</a>
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6)
Does the label "fibromyalgia" alter health status, function, and health service
utilization?
A prospective, within-group comparison in a community cohort of adults with
chronic widespread pain.
Arthritis Rheum 2002 Jun 15;47(3):260-5 White KP, Nielson WR, Harth M, Ostbye T,
Speechley M.
University of Western Ontario, London, Ontario, Canada.
PMID: 12115155
Objective: To determine if assigning the label of fibromyalgia (FM) to
individuals with chronic widespread pain has a significant effect on long-term
health status, function, and health service utilization.
Methods: In the London Fibromyalgia Epidemiology Study, 100 individuals with FM
were identified by screening 3,395 non-institutionalized adults.
Only 28 of the 100 had been previously diagnosed with FM; for 72, the diagnostic
label was new. All 28 with prediagnosed FM were female compared with 58 of the
72 newly diagnosed cases. In a prospective, within-group comparison, we compared
previously non-labeled FM cases at study entry (prelabeling) and at 18 and 36
months followup (postlabeling) with respect to general health status,
fibromyalgia-related symptoms, and all items from the Fibromyalgia Impact
Questionnaire (FIQ) (including total FIQ score, and several measures of health
service utilization) to see if health status, function, and health services
utilization had changed, using paired t-tests. We also compared percentage
reporting work disability at baseline and 18 months using Pearson's chi(2).
Results: Fifty-six (78%) of the original 72 newly diagnosed FM cases were
available for reassessment at 18 months, and 43 (60%) at 36 months.
Although physical functioning decreased slightly over time, there also was a
statistically significant improvement in satisfaction with health, and newly
diagnosed FM cases reported fewer symptoms and major symptoms over the long
term. No other differences in clinical status or health service use occurred
over time.
Conclusion: The FM label does not have a meaningful adverse affect on clinical
outcome over the long term. Further research is necessary to document the short-
and long-term effect of labeling in the chronic pain patient.
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7)
MS Discoveries Edge Closer to Cure
Chemicals May Stop Tissue Damage By Jennifer Warner
May 31, 2002 -- Although researchers stop short of using the term "cure,"
several new discoveries may provide scientists with valuable clues about what
causes multiple sclerosis and how to stop the nerve damage it causes.
In a study published in the June 2002 issue of Brain, Mayo Clinic researchers
report they have found an enzyme that seems to play a role in spurring the
tissue damage that occurs in MS and other similar diseases. Meanwhile, two new
studies in the June 2002 issue of the journal Nature Medicine show that having
high levels of body chemicals known as cytokines may help protect crucial nerve
cells from damage.
Although the cause of multiple sclerosis (MS) is unknown, it's thought that the
disease occurs when the body's immune system mistakenly attacks the insulation
surrounding nerve cells. This insulation helps nerves conduct electrical
impulses, allowing us to perform functions from movement to speech to vision to
swallowing. The attack triggers a cascade of problems that eventually results in
the loss of this insulation, a process called demyelination.
The condition affects about one out of every 1,000 people, but it's more common
among women than men. MS typically strikes people between the ages of 20 and 40,
with symptoms ranging from numbness and tingling to incontinence and paralysis.
In their study, Mayo Clinic researchers say they have found a dramatic increase
in a newly discovered enzyme called MSP (myelencephalo-specific protease) in
tissue samples damaged by MS.
"If you could control this enzyme, you could possibly decrease the development
of the disease," says study author Isobel Scarisbrick, PhD, a neurologist at the
Mayo Clinic in Rochester, Minn., in a news release.
"We're not reporting this as a cure, but it represents something that could be
targeted for therapy."
Scarisbrick and colleagues are now developing tools to work with the enzyme and
attempt to determine exactly what role it plays in the demyelination process.
In related research, two studies from the University of Wuerzburg in Austria and
University of Melbourne in Australia shed light on the process of nerve cell
damage that occurs in MS. Their research points to two cytokine chemicals in the
body that may play a role in protecting some of the cells involved in this
process.
The Austrian research team found mice that lacked the cytokine CNTF had a more
severe form of MS than others. They suggest that this substance may protect
certain nerve cells from damage.
The Australian team found that another cytokine, called Leukemia Inhibitory
Factor (LIF), can reverse the loss of cells normally found in mice with MS. They
say LIF has already been tested in humans and has been well tolerated in doses
similar to those used in this animal study.
Researchers say these findings may serve as the basis for a new way to treat MS
by targeting the process of cell damage itself.
© 2002 WebMD Inc. All rights reserved.
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8)
An Association of Silicone-gel Breast Implant Rupture and Fibromyalgia
Curr Rheumatol Rep 2002 Aug;4(4):293-8 Brown SL, Duggirala HJ, Pennello G.
US Food and Drug Administration, Epidemiology Branch, Center for Devices and
Radiological Health, HFZ-541, 1350 Piccard Drive, Rockville, MD
20850, USA. mailto:sy-@cdrh.fda.gov
Silicone-gel breast implant rupture is common. Silicone-gel from ruptured
implants may escape the scar capsule that forms around breast implants and
become "extracapsular silicone." Our previously published study found that women
with extracapsular silicone gel were at higher risk of reporting that they were
diagnosed with fibromyalgia. There has been a limited number of studies
addressing this association in the literature. Some studies addressing the issue
of silicone breast implants and connective tissue disease specifically exclude
patients with fibromyalgia from the sample or do not include the syndrome in the
analysis. Case series describing fibromyalgia in patients with implants have
been published, but many of these papers lack information on extracapsular
silicone and are not representative because the patients are typically from
referral populations. In addition, most studies do not have control groups of
women without implants for comparison or do not distinguish between saline and
silicone implants. Additional observational studies of women from nonreferral
populations are necessary to validate an association. These studies should
provide information on how the rupture is diagnosed, state whether the rupture
extended beyond the capsule, and provide an appropriate control group for
comparison. The findings from such studies may be important to physicians as
they describe potential risks associated with implants to their patients. These
findings should also be important for regulatory decision making on silicone-gel
breast implants.
PMID: 12126580
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9)
UGH! Head Pain Season in Full Bloom
An Interview With Dr. Robert E. Ryan, Jr., executive director of the Ryan
Headache Center
Yesterday was a glorious day! Definitely spring, it was sunny, warm, slightly
breezy, replete with the trees leafing out and my favorite azalea in full bloom
in the front yard. Life was good — but not for long. One of spring's instruments
of torture was on the way. Yes, you guessed it. A weather front moved in,
bringing a 30-degree drop in temperature, big barometric pressure changes, rain,
thunder, and lightning that sent the cat scurrying to the laundry room to hide.
If it would have helped my throbbing head, I would have gone with her.
Check it out:
http://headaches.about.com/library/nosearch/n-ryan-inter.htm AOL users: <a
href="http://headaches.about.com/library/nosearch/n-ryan-inter.htm">Read it
here</a>
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10)
Gulf War Syndrome Information
Check it out: http://www.cfs.inform.dk/Gws/gws.html AOL users: <a href="http://www.cfs.inform.dk/Gws/gws.html">Read
it here</a>
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11)
How to get your anger under control
"Chances are good that if you do have a problem with anger, you already know it.
If you find yourself acting in ways that seem out of control and frightening,
you might need help finding better ways to deal with this emotion." -- from
Controlling Anger -- Before It Controls You by the American Psychological
Association. This is an excellent introductory document on anger. You'll find a
definition of anger as well as the three ways of expressing anger. Most
importantly, the document provides six different ways of managing anger,
allowing you to take a proactive approach in handling this powerful emotion.
Check it out: http://panicdisorder.about.com/library/weekly/aa980715.htm AOL
users: <a href="http://panicdisorder.about.com/library/weekly/aa980715.htm">Read
it here</a>
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12)
First step in beating depression is admitting it
ATLANTA, Georgia (CNN) --Tom Johnson, former CEO of CNN, and J.B. Fuqua, one of
Georgia's most prominent businessmen and philanthropists, have been friends for
years and shared a deep secret.
Depression.
Check it out:
http://www.cnn.com/2002/HEALTH/conditions/07/16/cov.depression.ceo/index .html
AOL users: <A href="http://www.cnn.com/2002/HEALTH/conditions/07/16/cov.depression.ceo
/index.html">Read it here</a>
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13)
New Subtype of Cluster Headache Identified
NEW YORK (Reuters Health) Jun 12 - Researchers have identified a new subtype of
cluster headache in which headaches are precipitated by a defined trigger event
and never occur spontaneously.
Dr. Todd D. Rozen and James Ko, from the Thomas Jefferson University in
Philadelphia, describe the clinical features of an 86-year-old man who was
referred to their center for the evaluation of severe headaches. The headaches,
which had been present for 10 years, occurred three to four times each day, and
usually lasted for 4 hours.
The clinical features of the headaches were consistent with a diagnosis of
cluster type headache. However, in contrast to classic clusters, the headaches
never occurred spontaneously. Specifically, the headaches occurred only after
the patient performed a Valsalva maneuver, such as coughing or sneezing. The
headaches were successfully prevented with indomethacin therapy.
"We know of no previously published cases of cluster headache solely occurring
after a particular trigger and never spontaneously," the authors state in the
April issue of Headache. "Event-related cluster may represent an indomethacin-sensitive
subtype of cluster headache," they add.
In the same journal issue, Dr. William Krimsky and Dr. Howard Weiss, from Sinai
Hospital of Baltimore, describe another rare type of headache.
The case involved a 47-year-old man who presented to the emergency department
complaining of a bifrontal headache. The patient described transient visual
blurring, but no other associated symptoms, such as nausea, were reported.
Initial workup, including brain CT, was negative and, after responding to
injectable sumatriptan, the patient was diagnosed with atypical migraine.
Soon after discharge, the patient's symptoms returned. The patient presented to
a different hospital's emergency department and was admitted to the hospital for
further evaluation. During the hospital stay, brain MRI was performed and
revealed a small hemorrhage within a cystic-appearing pituitary gland.
The patient was treated with hydrocortisone, and an MRI performed about
6 weeks later revealed a decrease in size of the gland, consistent with
spontaneous regression of a cystic adenoma.
Two important lessons can be learned from this case, the authors note.
First, MRI is better than CT in diagnosing pituitary tumors or hemorrhage; and
second, a headache diagnosis cannot be based solely on response to sumatriptan.
Headache 2002;42:291-293,301-302.
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14)
Not All Multivitamins Pack the Same Punch
Sun Jul 21, 2:04 PM ET By Colette Bouchez HealthScoutNews Reporter
SUNDAY, July 21 (HealthScoutNews) -- Ever since "I Love Lucy" gave us the
classic "Vitameatavegemin" episode, vitamins have been a household word.
Indeed, studies published recently by the National Center for Environmental
Health found that each year Americans spend up to $1.7 billion on vitamin
supplements, making them the third most popular over-the-counter drugstore buy.
But, how many of us know what we're really getting when we purchase supplements?
Experts say too often we may be buying far more "good health" than we really
need.
Check it out:
http://story.news.yahoo.com/news?tmpl=story2&cid=97&ncid=97&e=1&u=/hsn/2
0020
721/hl_hsn/not_all_multivitamins_pack_the_same_punch AOL users: <a href="http://story.news.yahoo.com/news?tmpl=story2&cid=97&ncid=97&e=1&u=
/hsn/20020
721/hl_hsn/not_all_multivitamins_pack_the_same_punch">Read it here</a>
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15)
WRITE NOW: Maintaining a Creative Spirit While Homebound and Ill
This guide to maintaining the creative spirit through writing while ill and
homebound is available without charge to patient groups, service providers, and
others. The book is made possible through a generous grant from the Puffin
Foundation Ltd. and via support from the Townsend Press. The Puffin Foundation
supports projects that encourage "a dialogue between art and the lives of
ordinary people."
Check it out:
http://chronicfatigue.miningco.com/library/blwritenow.htm?pid=2750&cob=h ome AOL
users: <a href="http://chronicfatigue.miningco.com/library/blwritenow.htm?pid=2750
&cob=home">Read it here</a>
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16)
Water workouts: A cool way to exercise without stressing your joints, bones or
muscles
Done correctly, water workouts can give you the same fitness gains as land
workouts, including better balance. And water is hospitable to just about
everyone, enabling those with arthritis, disabilities or injuries, those
recovering from illness or surgery, and those who are pregnant or overweight to
exercise safely and effectively.
Check it out: http://www.mayoclinic.com/invoke.cfm?id=HQ01619&si=1415 AOL users:
<a href="http://www.mayoclinic.com/invoke.cfm?id=HQ01619&si=1415">Read it
here</a>
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17)
Nutrition tips for when you lose your appetite
Sometimes a particular illness or its treatment can affect your appetite. Since
it's important to maintain good nutrition — which includes getting both adequate
calories and protein — the following tips may help you plan meals and snacks
that will be more appealing to you and give you the nutrition you need.
Check it out: http://www.mayoclinic.com/invoke.cfm?id=HQ01134&si=1401 AOL users:
<a href="http://www.mayoclinic.com/invoke.cfm?id=HQ01134&si=1401">Read it
here</a>
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18)
Non-dipping in diabetic patients: insights from the siesta
Journal of Human Hypertension, June 2002, vol. 16, no. 6, pp.
435-438(4)
Perk G.[1]; Mekler J.[1]; Ben Ishay D.[1]; Bursztyn M.[1]; Correspondence: M
Bursztyn*
[1]Hadassah University Hospital, Mount Scopus, Jerusalem, Israel [*]Department
of Medicine, Hadassah University Hospital, Mount Scopus, PO Box 24035, Jerusalem
91240, Israel. E-mail: bur-@cc.huji.ac.il
Abstract:
Non-dipping, ie failure to lower blood pressure during sleep, has been found to
be more prevalent in diabetic than in non-diabetic subjects.
However, the reasons remain to be clarified. Diabetic patients may wake up more
frequently during the night (for instance, due to nocturia).
This may result in inclusion of awake blood pressure measurements in the
night-time average and thus erroneously raise this average, causing
misclassification of patients as non-dippers. However, non-dipping in diabetes
may be due to blunted effect of sleep itself on blood pressure secondary to
autonomic neuropathy. We undertook this study in order to further clarify this
question. We studied 23 diabetic patients, and 23 matched controls who underwent
24-h ambulatory blood pressure monitoring, and reported taking an afternoon nap.
Afternoon nap, by virtue of its short duration, is devoid of interruptions, and
thus can be used as a model for tiled, non-interrupted sleep. We found that,
both in diabetic patients and controls, blood pressure declined during the
afternoon nap in a similar magnitude to the night-time decline. However, this
decline was significantly blunted in the diabetic patients (13.9 ±
2.2% decline in diastolic blood pressure during naptime in the diabetic
patients, as compared with 24 ± 2.3% decline in diastolic blood pressure during
the siesta in the control group, P < 0.02). The blunted decline of blood
pressure during the nap in diabetic patients demonstrates that non-dipping is
due to the blunted effect of sleep itself. This can be another facet of
autonomic dysfunction seen in diabetes mellitus.
Journal of Human Hypertension (2002) 16, 435–438. DOI:
10.1038/sj/jhh/1001412
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