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Fibromyalgia Community Newsletter #22
Monday, June 17, 2002
Subscription update: 1687 members and 18 new members.
Welcome!
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Editor's note: I would like to thank Mary, Chip, Jane and Nancy for their help
with the newsletter. Their generous assistance with research and caring
companionship make it possible for me to put this newsletter out on a
semi-regular basis without going insane. I couldn't do it without all of their
hard work. Thanks, team. :-)
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Featured link: Traveling with disabilities
With the vacation season already here, you may find that you need help with trip
planning. This site helps those with disabilities or special needs book and plan
trips, and gives lots of tips and hints for easy travel.
Check it out: http://www.rumpleduck.com
AOL users: <a href="http://www.rumpleduck.com">Read it
here</a>
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This week's news:
1) Understanding Your Energy Envelope, Part 2
2) New FMS magazine available
3) FDA Approves Once-Daily Avinza For Chronic, Moderate-To-Severe Pain
4) Botulinum Toxin Type B Promising for Treatment of Refractory Myofascial Pain
5) Depression, A CEO and His Son
6) Ten Tips for Managing Conflict, Tension and Anger
7) Antianxiety Medications: From the U.S. National Institute of Mental Health
8) Treatment of chronic fatigue syndrome by dietary supplementation with omega-3
fatty acids - a good idea?
9) Predictors of success of intervention programs for persons with fibromyalgia
10) An open, pilot study to evaluate the potential benefits of coenzyme Q10
combined with Ginkgo biloba extract
11) Irritable Bowel Syndrome & Fibromyalgia
12) New test for Lyme disease
13) Cognitive Function & Fibromyalgia
14) NCCAM launches redesigned alternative medicine site
15) Celebrex: Is it safe?
16) Coenzyme Q10 May Stave off Migraine
17) Book: Overcoming the dangers of antidepressants
18) Workplace experiences survey for women with disabilities
19) Cutting-edge Fibromyalgia Conference in Los Angeles
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1) Understanding Your Energy Envelope, Part 2
This week's feature at the CFIDS/Fibromyalgia Self-Help website is the second of
two articles on controlling symptoms by honoring the body's limits. This article
describes how to develop a detailed understanding of your energy envelope.
Check it out: http://CFIDSselfhelp.org
AOL users: <a href="http://CFIDSselfhelp.org">Read it
here</a>
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2) New FMS magazine available
Fibromyalgia AWARE is the first consumer magazine to address the needs and
concerns of people affected by Fibromyalgia and overlapping conditions.
Published by the National Fibromyalgia Association three times a year,
Fibromyalgia AWARE is a comprehensive, reliable resource that will help to
improve the quality of life of all those affected by Fibromyalgia and
overlapping conditions. The magazine includes:
* The latest news in research
* Helpful information on general health and well-being
* A balanced approach to treatment options
* Education on matters concerning lifestyle and self-management techniques
* A medical supplement for physicians and other health care professionals
Support the NFA with a tax-deductible donation of $35 or more ($45 Canada; $60
Overseas), and receive one year (three issues) of Fibromyalgia AWARE magazine as
our thank you.
National Fibromyalgia Association
2238 N. Glassell St., Suite D Orange, CA 92865 Phone: +1 (714) 921-0150 Email:
adver-@fmaware.org
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3) FDA Approves Once-Daily Avinza For Chronic, Moderate-To-Severe Pain
DUBLIN, IRELAND -- March 21, 2001 -- The U.S. Food and Drug Administration has
granted marketing approval of Elan Corporation, plc's new drug application for
Avinza (morphine sulfate extended-release) capsules for the once-daily treatment
of chronic, moderate-to-severe pain in patients who require continuous,
around-the-clock therapy for an extended period of time, Elan announced today.
Avinza (formerly MorphelanT) was developed by Elan Corporation, ("Elan"), which
licensed the U.S. and Canadian marketing rights to Ligand Pharmaceuticals Inc. (Nasdaq:
LGND) in 1998. Elan retains marketing rights for the rest of the world and
regulatory filings are pending in major territories. The product will be
manufactured by Elan in the United States and is expected to be launched in the
second quarter of 2002.
"Avinza represents a major technical achievement for Elan and a medical advance
in the management of chronic pain," said Donal J. Geaney, Chairman and Chief
Executive Officer of Elan. "Using our proprietary controlled release technology
(SODAS®), we have engineered a morphine capsule product, which gives patients
protection from moderate to severe pain over a 24-hour period. In safety and
effectiveness trials conducted by Elan, Avinza, given once daily, provided
effective 24-hour pain relief. Avinza will provide an important therapeutic
option for many patients who live with the pain associated with cancer and other
medical conditions."
Avinza's novel dual release formulation contains immediate- and
sustained-release morphine beads. Once steady-state plasma levels of morphine
are achieved, the immediate-release beads enable Avinza to provide rapid
exposure to morphine. The sustained-release beads enable morphine to be absorbed
by the body gradually, thus maintaining plasma morphine levels over a 24-hour
dosing period.
SOURCE: Elan Corporation, plc
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4) Botulinum Toxin Type B Promising for Treatment of Refractory Myofascial Pain
By Jill Stein
BALTIMORE, MD -- March 18, 2002 -- Nearly two-thirds of patients obtain at least
a 50 percent reduction in symptoms of refractory myofascial pain syndrome (MPS)
after treatment with Botulinum toxin type B (BTB), new findings suggest.
The data were presented at the 21st Annual Scientific Meeting of the American
Pain Society (APS) by Dr. Dorene Taqi, from the University of Oklahoma College
of Medicine in Tulsa, Oklahoma, United States.
Her group retrospectively reviewed 32 patients who had received BTB for the
treatment of refractory MPS. These data were added to an additional eight
patients who received BTB in a prospective manner as part of a phase I study
evaluating BTB in lower back myofascial pain.
The forty patients received BTB injections into affected muscles. The injections
were performed as standard trigger point injections by palpation using BTB 500
to 2500 units/site in 0.5-2 ml (0.5% bupivicaine was used to dilute to the
desired concentration).
The response to injection was defined as poor (referring to a 30 percent symptom
reduction), fair (referring to a 30 to 49 percent symptom reduction), good
(referring to a 50 to 69 percent symptom reduction), and excellent (referring to
a 70 percent reduction.
Twelve patients reported good and 11 patients reported excellent pain relief
lasting an average of 3.3 months. An additional eight patients reported fair
responses.
During the response phase, the patients who responded well to BTB were able to
tolerate a more aggressive therapeutic regimen. No significant side effects were
observed.
Dr. Taqi said that the results show that nearly 60 percent of MPS patients who
are treated with BTB have at least a 50 percent decrease in symptoms.
Botulinum toxin type B, she added, may reduce the symptoms of and disability
associated with MPS by breaking the pain/spasm cycle, giving the patient a
"window of opportunity" for conservative measures to have a positive impact.
She also noted that lower doses (2500 to 5000 units) appear to produce a
definite, but shorter-lived response (four to eight weeks). Increasing the dose
appears to produce response rates exceeding three months.
Finally, the major benefit of BTB is that the duration of response is several
months compared with trigger point injections which typically last only days to
weeks.
The prospective portion of this study was supported by a research grant from
Elan Pharmaceuticals.
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5) Depression, A CEO and His Son
When Andrew Solomon, then 31, fell into a deep depression in 1994, his father's
life changed immediately and immeasurably. Howard Solomon, the head of a modest
drug company in New York City called Forest Laboratories Inc.
(FRX ), brought Andrew to live with him the day his son started taking
medication. At first, says Howard, "I didn't understand what Andrew was
suffering, that he was really ill. I told him, `Cheer up, hang in there, it will
pass.' Andrew made me understand."
Check it out:
http://www.businessweek.com/magazine/content/02_21/b3784001.htm
AOL users: <a href="http://www.businessweek.com/magazine/content/02_21/b3784001.htm">Read
it here</a>
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6) Ten Tips for Managing Conflict, Tension and Anger
To be a safe and predictable person for those around you at work and at home, it
is essential that you are able to maintain your composure when you feel like
your 'buttons' are being pushed. This strength will help you to achieve your
goals in business as well as your goals for your personal relationships.
Check it out:
http://mentalhealth.about.com/library/weekly/aa032601a.htm
AOL users: <a href="http://mentalhealth.about.com/library/weekly/aa032601a.htm">Read
it here</a>
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7) Antianxiety Medications: From the U.S. National Institute of Mental Health
NIH Publication No. 95-3929 Printed 1987, Revised 1992, 1995
Everyone experiences anxiety at one time or another "butterflies in the stomach"
before giving a speech or sweaty palms during a job interview are common
symptoms. Other symptoms of anxiety include irritability, uneasiness, jumpiness,
feelings of apprehension, rapid or irregular heartbeat, stomach ache, nausea,
faintness, and breathing problems. Anxiety is often manageable and mild. But
sometimes it can present serious problems. A high level or prolonged state of
anxiety can be very incapacitating, making the activities of daily life
difficult or impossible.
Besides generalized anxiety, other anxiety disorders are panic, phobia,
obsessive-compulsive disorder (OCD), and posttraumatic stress disorder.
Phobias, which are persistent, irrational fears and are characterized by
avoidance of certain objects, places, and things, sometimes accompany anxiety. A
panic attack is a severe form of anxiety that may occur suddenly and is marked
with symptoms of nervousness, breathlessness, pounding heart, and sweating.
Sometimes the fear that one may die is present. Antianxiety medications help to
calm and relax the anxious person and remove the troubling symptoms.
There are a number of antianxiety medications currently available. The preferred
medications for most anxiety disorders are the benzodiazepines. In addition to
the benzodiazepines, a non-benzodiazepine, buspirone (BuSpar), is used for
generalized anxiety disorders. Antidepressants are also effective for panic
attacks and some phobias and are often prescribed for these conditions. They are
also sometimes used for more generalized forms of anxiety, especially when it is
accompanied by depression. The medications approved by the FDA for use in OCD
are all antidepressants clomipramine, fluoxetine, and fluvoxamine. The most
commonly used benzodiazepines are alprazolam (Xanax) and diazepam (Valium),
followed by chlordiazepoxide (Librium, Librax, Libritabs). Benzodiazepines are
relatively fast-acting medications; in contrast, buspirone must be taken daily
for 2 or 3 weeks prior to exerting its antianxiety effect. Most benzodiazepines
will begin to take effect within hours, some in even less time. Benzodiazepines
differ in duration of action in different individuals; they may be taken two or
three times a day, or sometimes only once a day. Dosage is generally started at
a low level and gradually raised until symptoms are diminished or removed. The
dosage will vary a great deal depending on the symptoms and the individual's
body chemistry.
Benzodiazepines have few side effects. Drowsiness and loss of coordination are
most common; fatigue and mental slowing or confusion can also occur.
These effects make it dangerous to drive or operate some machinery when taking
benzodiazepines especially when the patient is just beginning treatment. Other
side effects are rare.
Benzodiazepines combined with other medications can present a problem, notably
when taken together with commonly used substances such as alcohol.
It is wise to abstain from alcohol when taking benzodiazepines, as the
interaction between benzodiazepines and alcohol can lead to serious and possibly
life-threatening complications. Following the doctor's instructions is
important. The doctor should be informed of all other medications the patient is
taking, including over-the-counter preparations. Benzodiazepines increase
central nervous system depression when combined with alcohol, anesthetics,
antihistamines, sedatives, muscle relaxants, and some prescription pain
medications. Particular benzodiazepines may influence the action of some
anticonvulsant and cardiac medications. Benzodiazepines have also been
associated with abnormalities in babies born to mothers who were taking these
medications during pregnancy.
With benzodiazepines, there is a potential for the development of tolerance and
dependence as well as the possibility of abuse and withdrawal reactions.
For these reasons, the medications are generally prescribed for brief periods of
time days or weeks and sometimes intermittently, for stressful situations or
anxiety attacks. For the same reason, ongoing or continuous treatment with
benzodiazepines is not recommended for most people. Some patients may, however,
need long-term treatment. Consult with the doctor before discontinuing a
benzodiazepine.
A withdrawal reaction may occur if the treatment is abruptly stopped.
Symptoms may include anxiety, shakiness, headache, dizziness, sleeplessness,
loss of appetite, and, in more severe cases, fever, seizures, and psychosis.
A withdrawal reaction may be mistaken for a return of the anxiety, since many of
the symptoms are similar. Thus, after benzodiazepines are taken for an extended
period, the dosage is gradually tapered off before being completely stopped.
Although benzodiazepines, buspirone, tricyclic antidepressants, or SSRIs are the
preferred medications for most anxiety disorders, occasionally, for specific
reasons, one of the following medications may be prescribed: antipsychotic
medications; antihistamines (such as Atarax, Vistaril, and others); barbiturates
such as phenobarbital; and beta-blockers such as propranolol (Inderal, Inderide).
Propanediols such as meprobamate (Equanil) were commonly prescribed prior to the
introduction of the benzodiazepines, but today rarely are used.
Check it out: http://www.nimh.nih.gov
AOL users: <a href="http://www.nimh.nih.gov">Read it
here</a>
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8) Treatment of chronic fatigue syndrome by dietary supplementation with omega-3
fatty acids - a good idea?
Journal: Med Hypotheses 2002 Mar;58(3):249-50
Authors: Tamizi far B, Tamizi B.
Affiliation: Department of Research, Isfahan University of Medical Sciences,
Isfahan, Iran
NLM Citation: PMID: 12018979
Minor alterations of immune, neuroendocrine, and autonomic function may be
associated with the chronic fatigue syndrome.
Omega-3 fatty acids decrease the production of putative mediators of
inflammation, including interleukin-1, and tumor necrosis factor.
Since interleukin-1 and tumor necrosis factor are the principal polypeptide
mediators of immunoregulation, reduced production of these cytokines by dietary
supplementation with omega-3, may be a possible mechanism for the treatment of
chronic fatigue syndrome.
Copyright 2002, Elsevier Science Ltd. All rights reserved.
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9) Predictors of success of intervention programs for persons with fibromyalgia.
Journal: J Rheumatol 2002 May;29(5):1034-40
Authors: King SJ, Wessel J, Bhambhani Y, Sholter D, Maksymowych W.
Affiliation: Health Science Council Office, University of Alberta, Edmonton,
Canada.
NLM Citation: PMID: 12022320
OBJECTIVE: To determine which sociodemographic, psychological, and behavioral
characteristics of persons with fibromyalgia (FM) will predict a positive
response to treatment; and to determine if subjects classified according to the
Multidimensional Pain Inventory (MPI) responded differently to the
interventions.
METHODS: One hundred twenty-eight women with FM underwent baseline testing and
were randomized into one of 3 intervention groups or a control group. After the
12 week program, the subjects were reexamined on the same pretest measures.
Stepwise regression analyses were conducted to determine the variables that
could significantly predict the change in the dependent variables. A reliability
of change index was calculated to determine the proportion of responders and
nonresponders.
RESULTS: The stepwise regression revealed significant predictor variables for
change for all dependent variables except the Fibromyalgia Impact Questionnaire;
however, the percentage of the variance in the change scores explained by the
independent variables ranged from 4 to 15%.
Results from the reliability of change index indicated that no MPI subgroup
responded more than another group on any measure.
CONCLUSION: Select sociodemographic and psychosocial variables and type of
intervention were not strong predictors of improvement in a variety of measures
after a treatment program. The low percentage of explained variance may be due
to the heterogeneity of FM. Additionally, the low percentage of responders
suggests that current forms of treatment are not effective for a large portion
of the FM population.
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10) An open, pilot study to evaluate the potential benefits of coenzyme Q10
combined with Ginkgo biloba extract in fibromyalgia syndrome.
J Int Med Res 2002 Mar-Apr;30(2):195-9
Lister RE.
Phylax Ltd, Beaconsfield, UK. bobph-@cs.com
PMID: 12025528
An open, uncontrolled study was undertaken to measure the subjective effects of
coenzyme Q10 combined with a Ginkgo biloba extract in volunteer subjects with
clinically diagnosed fibromyalgia syndrome.
Anecdotal reports from patients with fibromyalgia syndrome have claimed benefits
from the use of these supplements. The aim of this study was to determine if
these reports could be substantiated in a pilot clinical trial.
Patient questioning had determined that poor quality of life was a major factor
in the condition and a quality-of-life questionnaire was used to measure
potential benefit. Subjects were given oral doses of 200 mg coenzyme Q10 and 200
mg Ginkgo biloba extract daily for 84 days. Quality of life was measured, using
the well-validated Dartmouth Primary Care Cooperative Information Project/World
Organization of Family Doctors (COOP/WONCA) questionnaire that measures seven
different subjective responses, at 0-, 4-,
8-, and 12-week intervals. The subjects were asked for an overall self-rating at
the end of the study.
A progressive improvement in the quality-of-life scores was observed over the
study period and at the end, the scores showed a significant difference from
those at the start. This was matched by an improvement in self-rating with 64%
claiming to be better and only 9% claiming to feel worse. Adverse effects were
minor. A controlled study is now planned.
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11) Irritable Bowel Syndrome & Fibromyalgia
Fibromyalgia patients may have a special interest in learning more about this
condition, since research has shown that it frequently coexists with FM.
Check it out:
http://fmaware.org/patient/related/ibs.htm
AOL users: <a href="http://fmaware.org/patient/related/ibs.htm">Read
it here</a>
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12) New test for Lyme disease
One of the thorniest issues in the treatment of Lyme disease has been figuring
out who has it. A new high-tech test may help provide a better answer to anxious
patients and their doctors.
Check it out:
http://www.immunesupport.com/library/showarticle.cfm/id/3602
AOL users: <a href="http://www.immunesupport.com/library/showarticle.cfm/id/3602">Read
it here</a>
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13) Cognitive Function & Fibromyalgia
Many FM patients complain of cognitive (or mental) symptoms such as memory
failures (both long-term and short-term), difficulties with attention, and with
finding the right words. Our research focuses on these cognitive problems in FM
patients.
Check it out:
http://fmaware.org/patient/research/cognitive.htm
AOL users: <a href="http://fmaware.org/patient/research/cognitive.htm">Read
it here</a>
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14) NCCAM launches redesigned alternative medicine site
The National Center for Complementary and Alternative Medicine (NCCAM) recently
announced the launch of its newly redesigned Web site, which houses an array of
information on complementary and alternative medicine(CAM) practices and
research. The site features not only a new architecture for easier navigation
and access to information, but also new content and links.
Check it out: http://nccam.nih.gov
AOL users: <a href="http://nccam.nih.gov/">Read it
here</a>
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15) Celebrex: Is it safe?
Celebrex is an oft prescribed pain killer for those of experiencing FMS or CFIDS
related pain. It is a COX-2 inhibitor, a type of medication that was thought to
be safe for the frequently delicate digestive tracts of CFIDS or FMS patients.
A New York Times story entitled, "Study Finding Celebrex Safer Was Flawed",
charges that there were serious irregularities in the study that claimed the
popular and profitable drug caused fewer ulcers.
"The flawed findings published in the original article appear to be widely
distributed and believed," wrote Dr. Peter Juni, a senior researcher at the
University of Berne in Switzerland, and two other doctors. If Pharmacia (the
makers of Celebrex) is not required to inform doctors that the study's
conclusion was invalid, they said, "the pharmaceutical industry will feel no
need to put the record straight in this or any future instances."
Dr. Steven Geis, Pharmacia's Vice President for clinical research stated that
the company disagreed with Juni's report and stated the Celebrex study used
appropriate clinical judgement.
Check it out:
http://www.nytimes.com/2002/06/01/health/01DRUG.html
AOL users: <a href="http://www.nytimes.com/2002/06/01/health/01DRUG.html">Read
it here</a>
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16) Coenzyme Q10 May Stave off Migraine
NEW YORK (Reuters Health) May 10 - Treatment with coenzyme Q10 appears to be
effective in preventing migraine, according to findings of an open-label study.
The investigators "utilized coenzyme Q10--an essential element of the
mitochondrial electron transport chain--as a migraine preventive because of the
possible role that mitochondrial dysfunction may play in migraine pathogenesis,"
lead researcher Dr. Todd D. Rozen told Reuters Health.
"Coenzyme Q10 is the most extensively studied agent for the treatment of
mitochondrial disorders."
Dr. Rozen, of the Cleveland Clinic Foundation, and colleagues treated 32
patients with episodic migraine with or without aura using a dose of 150 mg of
coenzyme Q10 a day. The findings appeared in the March issue of Cephalalgia. The
4-month study consisted of a 1-month baseline phase, followed by 3 months of
treatment.
The 31 patients, evaluated after 3 months of treatment, showed a significant
reduction in the average number of days with migraine. This fell from 7.34 days
at baseline to 2.95 days by the end of the trial. Overall, 61.3% of patients had
a greater than 50% reduction in the number of days with migraine. The mean
reduction at 1 month of treatment was 13.1%, and at 3 months of treatment it was
55.3%.
There also was a significant reduction in mean migraine frequency. This fell
from 4.85 attacks at baseline to 2.81 at the end of the study. No side effects
were observed.
"There are very few efficacious migraine preventives and fewer without
significant side effects," Dr. Rozen continued. The results "are quite promising
and suggest the need of a future placebo-controlled trial. The fact that the
study patients had no side effects with coenzyme Q10 makes it a very appealing
agent for migraine prevention."
Cephalalgia 2002;22:137-141.
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17) Book: Overcoming the dangers of antidepressants
Dr. Cheney recently came across some information regarding the dangers of
Selective Serotonin Reuptake Inhibitors (SSRIs), such as Prozac, Zoloft and
Paxil, and stimulants like Ritalin and Provigil. During office visits, Dr.
Cheney shows patients the book "Prozac Backlash: Overcoming the Dangers of
Prozac, Zoloft, Paxil and Other Antidepressants" by Joseph Glenmullen, M.D., a
psychiatrist at Harvard Medical School. It includes endorsements from other Ivy
League psychiatrists. Cheney calls the implications of this book "staggering."
Check it out:
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3618
AOL users: <a href="http://www.immunesupport.com/library/bulletinarticle.cfm?ID=3618">Read
it here</a>
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18) Workplace experiences survey for women with disabilities
More than 26 million American women have disabilities and their workplace
experiences have gone largely unexamined. Little is known about the career
development activities of women with disabilities and how mentors and peer
supports might assist women advance. As part of a research project, about
450 working women with disabilities across the country will be asked to complete
a questionnaire specifically addressing their work.
If you are interested or would like more information:
Contact Mairead Moloney at 1-888-244-5323 (toll-free/voice) or Zoe McInerney at
617-355-4673(voice) 617-355-6956 (TTY) zoe-maja.-@tch.harvard.edu (Email)
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19) Cutting-edge Fibromyalgia Conference in Los Angeles
Please join us September 19-22, 2002 for a conference co-sponsored by The
Healthy Foundation, the National Fibromyalgia Association and the American
Association for Chronic Fatigue Syndrome. Two separate conferences will be
held--one for physicians and health care professionals and one for patients with
fibromyalgia, chronic fatigue syndrome, and related illnesses. For more
information or to register, call (800) 863-5085 or visit the conference website.
Check it out: http://www.AdMedCon.com
AOL users: <a href="http://www.AdMedCon.com">Read it
here</a>
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Designed, developed and owned by
The Fibromyalgia Community,
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CSSA Partner, (a 501(c)3
non-profit corporation)
maintained by
Chip Davis and
Jane Kohler
Copyright (C)
1997-2002 The Fibromyalgia Community.
All Rights Reserved.
Page Updated:
July 31, 2004
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