For Your Information
CFIDS/FMS News
Chronic Fatigue and Fibromyalgia Support Group
of South West Florida
Jan/Feb 2005
Meeting Third Saturday of the month, 10:30AM to Noon at the Cape Coral Hospital,
In the ‘New Café’, 636 Del Prado Boulevard, Cape Coral.
January – Round table discussion lead by a licensed counselor
February - Round table discussion lead by a licensed counselor
Handouts on Chronic Fatigue and Fibromyalgia are available at every meeting. A therapist leads round table discussion. Information and support is shared by all. Perfume and scent free due to sensitivities. Programs announced as available. Newsletters are published every other month.
If you received this newsletter in the mail it means we do not have your e-mail address!
It is not the number of breaths you take that make a life,
It is the moments that take your breath away.
From the Editor
I hate to keep begging but I still need help with the newsletter. I work full time and it is difficult to keep up. If someone could please help out I would appreciate it. You can do the whole thing or just part. Even just to take it to be copied and mailed would be a great help. Please contact me if you can spare a little energy for this.
Roxy Barber
Webeinflorida@juno.com
239/693-7252
New Treatment for Fibromyalgia
FROM: http://www.nlm.nih.gov/medlineplus/fibromyalgia.html
“While its cause remains a mystery, fibromyalgia has been linked to abnormalities in the brain’s neurotransmitters, serotonin and norepinephrine—chemicals key to mood and widely recognized for their role in depression. Not all patients with fibromyalgia, however, have depression or respond to antidepressants. Treatment studies of the other types of antidepressant drugs, including selective serotonin uptake inhibitors and tricyclic agents, have had mixed results.” “A new and different antidepressant, duloxetine, works by inhibiting the reuptake of both serotonin and norepinephrine. In a recent clinical trial conducted for the treatment of fibromyalgia—one of the largest ever—duloxetine was shown to reduce pain and improve a range of disease symptoms, significantly and safely.” That was for women, the men in the study reported some improvement but not significant. It is unclear if this is due to the small number of men in the study or actual differences in men’s response to the drug. “As Dr. Arnold notes, further research is needed on larger samples of not only men but also other groups with fibromyalgia to evaluate duloxetine’s effectiveness. Duloxetine (Cymbalta®) is indicated by the FDA for the treatment of major depressive disorder and is not indicated for the treatment of fibromyalgia.”
Fibromyalgia AWARE Magazine
Borders Bookstores nationwide now carry Fibromyalgia AWARE magazine for your convenience.
A New Theory of Disease?
FROM: Co-Cure digest, Sun, 9 Jan 2005 Department of Family Practice, University of Texas Health Science Center at San Antonio “Are we on the threshold of a new theory of disease? 'Toxicant-induced loss of tolerance' (or TILT) describes a two-step disease process in which
(1) certain chemical exposures, e.g., indoor air contaminants, chemical spills, or pesticide applications, cause certain susceptible persons to lose their prior natural tolerance for common chemicals, foods, and drugs (initiation);
(2) subsequently, previously tolerated exposures trigger symptoms. Responses may manifest as addictive or abdictive (avoidant) behaviors. In some affected individuals, overlapping responses to common chemical, food, and drug exposures, as well as habituation to recurrent exposures, may hide (mask) responses to particular triggers. Accumulating evidence suggests that this disease process might underlie a broad array of medical illnesses including chronic fatigue, fibromyalgia, migraine headaches, depression, asthma, the unexplained illnesses of Gulf War veterans, multiple chemical sensitivity, and attention deficit disorder.”
Pain Killers may Damage Intestine
FROM: http://www.nlm.nih.gov/medlineplus/news/fullstory_22178.html
More than 70 percent of patients who took NSAIDS painkillers such as aspirin, ibuprofen or naproxen for more than three months suffered damage to their small intestines. “The study is yet another blow to patients trying to find ways to treat arthritis pain, after reports that the most advanced drugs, called COX-2 inhibitors, can raise the risk of heart death. NSAIDS work very well but damage the stomach and intestine. They are blamed for 16,500 deaths a year in the United States alone. An older drug called misoprostol can help protect the stomach lining. It is the only drug approved to reduce the rate of bleeding," The article mentioned that studies have been done showing acupuncture to work for arthritis pain.
Patients and Doctors Agonize Over Risks of Painkillers
From: http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6176
ImmuneSupport.com 12-29-2004
By Thomas H. Maugh II and Rosie Mestel, Los Angeles Times Staff Writers
Vioxx was taken off the market by its maker because it doubled the risk of heart attack and stroke. The next option in the same family of drugs, Celebrex increases the risk of heart problems even more than Vioxx. Vioxx, Celebrex and Bextra, are known as Cox-2 inhibitors. They were introduced in the late 1990s to provide the pain-relieving effects of NSAIDs without producing bleeding problems, even though some studies showed that they didn't always prevent bleeding in the stomach or intestines.
And if that weren't enough the National Institutes of Health said that it had found a similar, although smaller, risk with Aleve. ( naproxen) Some of the most widely used painkillers are the nonsteroidal anti-inflammatory drugs, or NSAIDs, (a family that includes aspirin, ibuprofen and naproxen, among others,) can induce serious bleeding problems in the stomach and intestines.
Patients are asking questions — and physicians are not sure how to respond. The health risks associated with all of the drugs are relatively small, the benefits more important for many patients. "Certain groups of patients with autoimmune illnesses like rheumatoid arthritis or lupus will always be candidates for these medications, because the alternatives for them are going to have their own inherent risk, It would be a pity if these drugs were taken off the market."
For the moment, most physicians are probably telling their patients something very similar to the advice rendered by USC's Richeimer. "I'm telling patients there may be some risks to [the Cox-2 inhibitors]," Richeimer said. "If they are only getting mild or moderate benefit, they should consider other things. If they are getting great benefit and have no cardiovascular history or risks, I'm willing to prescribe them as long as they understand the risks." But, he added, "That advice may be very different in just a few weeks."
A major study published in the Archives of Internal Medicine this month showed that abruptly halting the use of naproxen and other so-called NSAIDs increased the risk of having a heart attack within the next 30 days by 50%, especially in patients with rheumatoid arthritis or lupus.
This reminds us to reduce our dependance on dangerous drugs and remember there are other therapies out there that can help, some as simple as exercise and diet.
Disability Multi-State Claim Settled
FROM: http://www.cfids.org/cfidslink/long-term-disability.asp
“On Nov. 18, 2004, Unum-Provident Corp., the nation’s largest disability carrier with 25 percent of the market nationwide, settled a multi-state investigation into claim denials. Unum will pay $15 million in fines and will be forced to re-examine 200,000 denied claims as part of the settlement. Attorneys general representing numerous states uncovered a corporate environment at Unum that encouraged looking “for every technical legal way to avoid paying a claim.””
“Persons with CFIDS (PWCs) may represent a sizable group within those improperly denied benefits. The investigation found that Unum relied solely on their in-house physicians and often failed to consider both physical and psychological conditions in determining whether to deny or terminate benefits. Scores of PWCs have reported these problems in their dealings with Unum and other insurers now owned by Unum. We’ve covered some of these stories in the CFIDS Chronicle over the years. Unum insures 25 million people, through individual and group policies written by: Unum Life Insurance Co. of America, the Paul Revere Life Insurance Co., the Provident Life and Casualty Insurance Co., Provident Life and Accident Insurance Co., and the First Unum Life Insurance Co.”
“If you have been denied benefits under a Unum-held policy, contact your disability attorney or visit http://www.unum.com/newsroom/news/corporate/11032004_settlement.aspx for details about the reconsideration process. The National Organization of Social Security Claimants Representatives provides a network of attorneys specializing in disability law. You can reach their referral service at 800-431-2804.”
Web Surfing
Fibromyalgia (FMS) andChronic Myofascial Pain (CMP)with Devin Starlanyl: http://www.sover.net/~devstar/index.htm
National Fibromyalgia Partnership Inc. http://www.fmpartnership.org
The American Fibromyalgia Syndrome Association, Inc. http://www.afsafund.org/
Fibromyalgia Network http://www.fmnetnews.com/
North American Chronic Pain Association of Canada NACPA
http://www.chronicpaincanada.org
Environmental Illness Association of Canada http://www.eisc.ca
CFIDS Support Network. www.cfids.org
CFIDS/FMS Lecture by Dr Nancy Klimas http://www.ncf-net.org/forum/klimas.htm
Clinical trials of new medications and/or treatment protocols: http://clinicaltrials.gov/
Laughter is the BEST Medicine
Doctor Visit
I went to visit my doctor for a medical examination. I sat there for several minutes as the doctor made his way through my very extensive medical history. After a while, he looked up and said, "You look better in person than you do on paper."
Disclaimer
The Chronic Fatigue and Fibromyalgia Support Group of South West Florida is a self-help program to present ideas and exchanges with the members. Nothing is to be construed as medical advise. This newsletter does not dispense medical advise, nor is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and no responsibility will be assumed for any treatment or activity undertaken by the readers.
Contact
Bonnie Dewar 239/543-2812
Terry Connor 239/945-1247
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I wish to donate the enclosed amount to help with the costs of the newsletter and ongoing costs of the Chronic Fatigue and Fibromyalgia Support Group of South West Florida. Any and all donations are appreciated.
$_______________________ mail to: Roxy Barber 223 Utah Ave, Fort Myers, FL 33905