FMS Community Newsletter #35
Monday, January 6, 2002


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FMS Community Newsletter #35
Monday, January 6, 2003
1957 members and 6 new members. Welcome!
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Featured link: Self-help course registration ends soon

Registration for the next session of the CFIDS/Fibromyalgia Self-Help
Course ends January 13th, and the course begins January 20th. The class
is an 8-week email discussion group that focuses on practical strategies
for managing common problems of fibromyalgia, CFIDS and related
illnesses. In this solution-oriented course, you exchange ideas with
fellow patients to learn how to pace, set realistic short-term goals,
reduce stress, manage emotions, improve relationships, and minimize
relapses.

Read Lisa Lorden's article about our course posted at the National
Fibromyalgia Association website:
http://www.fmaware.org/patient/coping/selfhelpcourse1.htm

AOL users: <a
href="http://www.fmaware.org/patient/coping/selfhelpcourse1.htm">Read it
here</a>
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) San Francisco area support group forming now
2) Woman's Day article explores fibromyalgia discoveries
3) Men and Fibromyalgia
4) FDA Designate to Certify Supplements
5) A study of standard care in fibromyalgia syndrome: a favorable
outcome.
6) Sleep and chronic pain. Challenges to the alpha-EEG sleep pattern as
a pain specific sleep anomaly.
7) Diffuse noxious inhibitory controls (DNIC) attenuate temporal
summation of second pain in normal males but not in normal females or
fibromyalgia patients.
8) CFS organization holds landscape photography contest
9) Regional cerebral blood flow and cytokines in young females with
fibromyalgia.
10) Treating Anemia May Resolve Restless Legs Syndrome
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1) San Francisco area support group forming now

Do you want to help in starting a Fibromyalgia (FM) support group in San
Francisco? Would you just like to be informed once the group is started?

You can help as much or as little as you'd like. Any and all assistance
will be very helpful. Because of the nature of the illness, FM (and
CFIDS) support groups seem to have difficulty sustaining themselves. By
collaborating, hopefully each person will only have to do a little.

If interested in HELPING, email me your phone # and best times to call.
If you don't have email, you can call me at 415-931-5503.

If you want to be NOTIFIED of when the group starts, EMAIL to me your
email address, phone number, and best times to call. If you don't have
email, send me a letter or postcard with your name and phone #. Please
don't call me.

Sharon Park
shar-@hotmail.com
1040 Bush St. #205
San Francisco, CA 94109
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2) Woman's Day article explores fibromyalgia discoveries

Fibromyalgia: The Latest News
How to find relief from the pain that won’t go away

Twenty years ago, Julie Lydon of Norwood, Massachusetts, started to
experience lower back pain. Soon she couldn’t stand up straight, and her
muscles stiffened when she sat for too long. Her body throbbed, and she
was tired all the time. Doctors ran a battery of tests, looking for
cancer, leukemia, anything. Finally, after 15 long years, Julie had a
diagnosis: fibromyalgia.
This chronic disorder, marked by unending pain and fatigue, affects up
to 10 million Americans, the majority of whom are women. But many
patients have a hard time getting diagnosed since the exact causes of
fibromyalgia are unclear, there is no blood test available and symptoms
can vary widely. As scientists continue to study this mysterious
ailment, promising discoveries are being made to help patients with
fibromyalgia better understand and manage their condition.

Check it out:
http://womansday.com/article.asp?print_page=yžion_id=4&article_id=7497&page_number=3

AOL users: <a
rticle.asp?print_page=yžion_id=4&article_id=7497&page_number=3">Read
it here</a>
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3) Men and Fibromyalgia   

Michael J. Fox became a "one of a kind" type of guy because he stepped
forward, and let the world know about his disease. He gained national
attention, and received national compassion and sympathy because of his
plight with disease. I applaud him for his courage to "take a stand" and
bring awareness to a disease, and to get attention for Parkinson's and
much needed research. But, he is a celebrity, and his job was fairly
easy.

What about Jim? Jim has fibromyalgia. He is not famous, and not many
people will know anything about the disease he struggles with on a
day-to-day basis. Jim lives in constant pain, he fears losing his wife
because he is no longer capable of "being a man." He fears his
grandchildren fading away from him, because "Grandpa" can't do "Grandpa"
things any more. His friends don't call anymore because he has been
"sick" one time too many.

Check it out:
http://www.fmaware.org/patient/coping/men_andfibromyalgia.htm
AOL users: <a
ref="http://www.fmaware.org/patient/coping/men_andfibromyalgia.htm">Read
it here</a>
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4) FDA Designate to Certify Supplements

Medscape Medical News 2002. ę 2002 Medscape
By Sid Kirchheimer

Dec. 18, 2002 — Some vitamin and dietary supplements are sporting a new
certification seal from the U.S. Food and Drug Administration (FDA)
designated representative in hopes of assuring consumers that the
product lives up to its ingredient labeling claims.

The United States Pharmacopeia (USP), an independent agency that serves
as the government's official compendium for dietary supplement
standards, has begun to issue the certification on hundreds of products
that it has independently tested as part of its Dietary Supplement
Verification Program (DSVP). This new program is voluntary and open to
all manufacturers of dietary supplements operating in the U.S., a
$17-billion-a-year market that includes vitamins, minerals, herbs,
botanicals, and sports supplements sold over the counter and consumed by
two of every three Americans.

"This is not a rubber stamp co-brand," said USP chief operating officer
John T. Fowler. "There is a great deal of work done. This is not
inexpensive, but the value is worth a lot in the minds of consumers when
they take a product off the shelf and know it has the ingredients that
it should and it doesn't have anything it shouldn't have."

To receive the certification, manufacturers must submit products they
select to a "vigorous" seven-step testing and evaluation process that
the USP says it ensures meets all labeling claims — first in independent
laboratories and then on store shelves. This process includes testing
and auditing of declared ingredients, their amounts or dosages, and
meeting requirements of limits on contaminants.

So far, hundreds of supplements by two leading manufacturers have been
tested and issued the certification. Products that will receive the
certification label include those by Nature Made, which just began to
hit shelves at some 30,000 stores nationwide, and those under the
Kirkland brand, which will be displayed at Costo stores beginning next
week.

Together, Nature Made and Kirkland produce about 30% of all vitamins and
minerals consumed nationally, and about 20% of the total supplement
market, said Richard Wailes, USP's head of sales and marketing. Four
other manufacturers have signed up for the certification program and
their products will carry the "Dietary Supplement Verified"
certification in 2003.

Under the program, manufacturers can submit any products they choose and
pay for all testing by USP, which has been establishing drug and other
product standards since 1820 and has worked hand-in-hand with the FDA
since the federal agency was created in 1938.

Because the FDA regulates dietary supplements as foods and not
"conventional" medicines, manufacturers typically do not have to get FDA
approval before producing or selling dietary supplements. The FDA can
take action only if a product is deemed unsafe and is already on the
market. Advertising claims for dietary supplements are regulated by the
Federal Trade Commission, not the FDA.

The USP certification does not ensure that a product is deemed safe or
lives up to reported health claims — a move that could mislead
consumers, says one consumer advocacy group.

"We applaud USP for trying to help consumers identify high-quality
dietary supplements," said David Schardt of the Center for Science in
the Public Interest. "But we are concerned that some consumers will
assume that the USP mark means the product is safe and beneficial. USP
risks losing its credibility if it is not clear about what is being
certified and what is not."

Mr. Fowler says that monitoring product safety is "not an appropriate
role for USP. Our emphasis is on the quality of ingredients." However,
he adds that USP will provide consumer literature on various supplements
on its Web site and in stores where the certified supplements are sold.

Reviewed by Gary D. Vogin, MD

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5) A study of standard care in fibromyalgia syndrome: a favorable
outcome.

J Rheumatol 2003 Jan;30(1):154-9
Fitzcharles MA, Costa DD, Poyhia R.
Division of Rheumatology, Montreal General Hospital, Montreal, Quebec,
Canada.
PMID: 12508406


OBJECTIVE: A longitudinal prospective study was undertaken to examine
the outcome of fibromyalgia (FM) with standard medical care, as well as
factors that might either predict or influence this outcome.

METHODS: Eighty-two women with clinical FM were evaluated at baseline
and 70 were followed for a mean of 40 months. Patients continued their
usual management for FM as prescribed by their own physicians. The
primary outcome variable was patient's overall status compared to
baseline on a 7 point Likert scale (range 1 = much worse, 7 = much
better). Secondary
outcome measures included measurements for pain, fatigue, and patient
and physician global assessment on a visual analog scale. Additional
functional measures were the disease-specific Fibromyalgia Impact
Questionnaire (FIQ), and the generic Health Assessment Questionnaire
(HAQ).

RESULTS: Of 70 (85%) patients who were followed up at 3 years, 33 (47%)
reported overall moderate to marked improvement, and the remaining 53%
reported either slight improvement, no change, or deterioration. The
improved group (n = 33) compared to those that remained the same or
worsened (n = 37) showed significant differences for change of score
from baseline for tender point count, patient global assessment, sleep
disturbance, fatigue, pain, FIQ and HAQ, and were younger, 46 versus 51
years. No other baseline demographic or disease variables discriminated
between the 2 groups. The only baseline predictors for a favorable
outcome were younger age and less sleep disturbance.

CONCLUSION: The overall outcome in this group was favorable, with almost
half the sample reporting clinically meaningful improvement in overall
FM status. These findings are discussed in terms of their implications
regarding current theory on the pathogenesis of FM.
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6) Sleep and chronic pain. Challenges to the alpha-EEG sleep pattern as
a pain specific sleep anomaly.

Journal: J Psychosom Res 2003 Jan;54(1):77-83
Authors: Rains JC, Penzien DB.
Affiliation: Center for Sleep Evaluation, Elliot Hospital, One Elliot
Way, Manchester, NH, USA
NLM Citation: PMID: 12505558

OBJECTIVE: The alpha-EEG sleep anomaly has been associated with chronic
benign pain syndromes. Although controversial, the anomaly is believed
by some to be an important biologic correlate of certain otherwise
poorly explained painful conditions (e.g., fibromyalgia and chronic
fatigue syndrome). To shed further light on this phenomenon, this study
compared the sleep and psychological characteristics of chronic pain
patients who exhibited the alpha-EEG sleep anomaly with pain-free
psychiatric and medical patients who also were found to exhibit the
alpha-EEG anomaly.

METHODS: The alpha-EEG sleep was identified in the polysomnographic
records of 5% of over 1000 consecutive sleep patients. Objective sleep
parameters, daytime sleepiness and psychological characteristics
(Minnesota Multiphasic Personality Inventory [MMPI] scores) of patients
exhibiting this anomaly were examined.

RESULTS: The alpha-EEG anomaly was identified in only 5% of the total
patient sample. Patients with the alpha-EEG anomaly could be further
classified into three diagnostic subgroups: chronic pain, psychiatric
and other medical/sleep disorders, The subgroups were compared on sleep
parameters and psychological characteristics. Less than 40% of the
patients exhibiting the alpha-EEG anomaly experienced chronic pain.
Chronic pain patients evidenced disturbed sleep patterns and
psychological characteristics that were for the most part similar to
those observed in some pain-free medical and psychiatric patients. Only
the medical subgroup exhibited objective daytime sleepiness. The
alpha-EEG sleep disturbance was not accounted for by psychological
characteristics.

CONCLUSIONS: These findings challenge the notion that alpha-EEG sleep is
of direct etiological significance in producing the pain complaint among
patients with chronic pain since the alpha-EEG sleep was not a
sufficient condition for pain.
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7) Diffuse noxious inhibitory controls (DNIC) attenuate temporal
summation of second pain in normal males but not in normal females or
fibromyalgia patients.

Pain 2003 Jan;101(1-2):167-74
Staud R, Robinson ME, Vierck CJ, Price DD.
Department of Medicine, University of Florida, P.O. Box 100221,
32610-0221, Gainesville, FL, USA
PMID: 12507711
Diffuse noxious inhibitory control (DNIC) is part of a central pain
modulatory system that relies on spinal and supraspinal mechanisms.
Previous studies have shown that fibromyalgia (FMS) patients are lacking
DNIC effects on experimental pain, compared to normal control (NC)
subjects.

Because DNIC has a greater effect on second pain than on first pain, we
hypothesized that wind-up (WU) of second pain should be attenuated by a
strong conditioning stimulus. Thus, we compared DNIC's effect on WU in
three groups of subjects: 11 NC males, 22 NC females, and 11 FMS
females.

To separately assess the contributions of distraction related mechanisms
to inhibition of second pain, we designed the experiment in such a way
that directed the subjects' attention to either the test or conditioning
stimulus. Repeated heat taps to the thenar surface of the right hand
were used as test stimuli to generate WU of second pain. Immersion of
the left hand into a hot water bath was the conditioning stimulus.

As previous experiments have shown, DNIC requires a strong conditioning
stimulus for pain attenuation, which may be at least partly dependent on
a distraction effect. DNIC significantly inhibited thermal WU pain in
normal male subjects, but adding distraction to the DNIC effect did not
increase the extent of this inhibition.

In contrast, neither DNIC nor DNIC plus distraction attenuated thermal
WU pain in female NCs. DNIC plus distraction but not DNIC alone produced
significant inhibition of thermal WU pain in female FMS patients.

Our results indicate that DNIC effects on experimental WU of second pain
are gender specific, with women generally lacking this pain-inhibitory
mechanism.
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8) CFS organization holds landscape photography contest

CF Alliance Newsletter is having a landscape photography contest; entry
deadline is March 28, 2003. The photography contest winner will have
their original photo published in the CF Alliance Newsletter's Summer
2003 issue and receive the book, The Fibromyalgia Nutrition Guide by Dr.
Joe Elrod and Mary Moeller, LPN. Landscape photo entries may range from
outdoor city scenes to mountain ranges. Entries will be judged on
originality, creativeness and technique. Please mail original color or
black/white photo entries no larger than 8"x10" inches (no slides
accepted) with your name and mailing address to CF Alliance, P.O. Box
9204, Bardonia, NY 10954 USA or send the photo as an email (not an
attachment) to: cfpe-@yahoo.com

Photo entries will not be returned.
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9) Regional cerebral blood flow and cytokines in young females with
fibromyalgia.

Clin Exp Rheumatol 2002 Nov-Dec;20(6):753-60
Gur A, Karakoc M, Erdogan S, Nas K, Cevik R, Sarac AJ.
Department of Physical Therapy and Rehabilitation, School of Medicine,
Dicle University, Diyarbakir, Turkey. mailto:al-@dicle.edu.tr

PMID: 12508765

OBJECTIVE: To determine whether there is any difference in regional
cerebral blood flow (rCBF) and serum cytokine levels and association
between clinical parameters and rCBF and serum cytokine levels in young
females with fibromyalgia (FM). The other aim was to search whether the
depression state has any effect on these two parameters.

METHODS: Nineteen women with FM and 20 healthy women had 99mTc-HMPAO
brain single-photon-emission computed tomography (SPECT) to evaluate
rCBF. Serum interleukin (IL) levels (IL 1 beta, IL 2r, IL 6 and IL 8)
were measured. Clinical and psychological evaluation was also carried
out in FM patients and healthy controls.

RESULTS: The patients with FM had significantly higher radioactivity
uptake ratio in right and left caudate nucleus (p = 0.009, p = 0.001,
respectively) than healthy controls. There was statistically significant
decrease in the 99mTc-HMPAO uptake in the right superior parietal (p =
0.041), gyrus rectalis (p = 0.036) and pons (p = 0.023). FM patients had
significantly higher serum IL 2r and IL 8 levels (p = 0.023, p = 0.011,
respectively) than controls. Additionally, FM patients had significantly
higher Fibromyalgia Impact Questionnaire (FIQ), Health Assessment
Questionnaire (HAQ), and Hamilton Depression Rate scale (HDRS) scores (p
= 0.000) than controls. Interestingly, the patients with mild depressive
symptoms or without (i.e. HDRS-score < or = 16) had significantly higher
serum IL 8 levels (p = 0.027) and increased radioactivity uptake ratio
in the pons (P = 0.036) than the patients with more severe depressive
symptoms (i.e. HDRS-score > 16). With regard to regional cerebral blood
flow, significant correlations were detected between RSP and morning
stiffness (r = 0.70, p < 0.01) and sleep disturbance (r = -0.53, p <
0.05), and between
gyrus rectalis and FIQ score. There were significant correlations
between LCN and IL-2 (P = 0.025), between RSP and morning stiffness (P =
0.006), sleep disturbance (P = 0.021) according to multiple regression
analysis test.

CONCLUSION: This study shows a significant increase in rCBF of caudate
nuclei, a reduction in the pons, some cortical regions activity and a
increase in IL 8, IL2r levels of young female patients with FM. These
findings are more prominent in patients with low HDRS scores.
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10) Treating Anemia May Resolve Restless Legs Syndrome

By Paula Moyer

MIAMI (Reuters Health) - Patients with restless legs syndrome may want
to find out if iron deficiency is causing their symptoms, particularly
if medication does not solve the problem, according to Dr. Birgit
Frauscher.

She and colleagues from the University of Innsbruck in Austria followed
the case of a man with long-standing restless legs syndrome. The man was
found to have low levels of iron in his blood. When he was given blood
transfusions after a surgery, his symptoms disappeared.

"Cases of restless legs syndrome which do not respond to medication may
be due to iron insufficiency," Dr. Birgit Hogl told Reuters Health. In
most cases, an iron supplement would be the appropriate treatment, she
said, noting that in this case the patient was very ill and required
blood transfusions before he could undergo surgery for cancer.

Frauscher, a neurology resident, was the principal investigator and
presented the findings here at the Movement Disorders Society's Seventh
International Congress of Parkinson's Disease and Movement Disorders.
Hogl, the chief of the sleep disorders clinic at the University of
Innsbruck, collaborated with her.

Restless legs syndrome, also known as RLS, is a common condition marked
by a discomfort in the legs and an irresistible urge to move them. RLS
is typically worse at night and at rest, and is therefore considered a
sleep disorder. Although no medication is approved in the United States
for treatment of RLS, physicians often prescribe certain drugs that are
used to treat Parkinson's disease, because it is thought that, like
Parkinson's, RLS is caused by an inadequate amount of dopamine in the
brain.

Physicians have known for some time that in certain patients inadequate
iron may be the underlying cause of RLS. This may be particularly true
for patients who develop the condition in association with other serious
medical problems, such as kidney failure, or patients who become anemic
while undergoing chemotherapy.

In this case, a 70-year-old male patient with a 6-year history of RLS
had experienced severe worsening of his symptoms for 2 months. When he
was examined, he was found to have cirrhosis of the liver and stomach
cancer. When he was seen at the sleep disorders clinic, a 3-night study
showed that he had severe insomnia.

Hogl and colleagues also conducted an RLS test known as "SIT" (suggested
immobilization test), in which the patient is told not to move. The SIT
results showed that the man's legs jerked involuntarily when he tried to
remain still, a characteristic RLS symptom. When the patient was given
levodopa, pergolide and ropinirole, medications often used to treat RLS,
he experienced no relief.

The physicians then reviewed the patient's chart and conducted several
laboratory tests. They found a slightly decreased iron blood level and
also found that the patient's iron levels were lowest when the RLS
symptoms were the most severe.

After the patient underwent surgery to receive a liver shunt and to
remove a portion of his stomach, he received blood transfusions. His RLS
disappeared, and he remains symptom free.

Hogl said that, although the patient had other serious health problems,
the RLS was very disruptive. She urged family members to make sure that
individuals with RLS get help. "RLS has a serious effect on the
patient's quality of life," she said. "This particular patient was so
plagued with insomnia due to the RLS that he had developed suicidal
thoughts."

 

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