Make your own free website on

Official CF-Alliance Website

Current Newsletter

Contact CF-Alliance
Pen Pal Form
Reading List
Health Book Review
Patient Recommended Doctor Lists
Awareness Postcards



CF-Alliance Newsletter
Autumn 2006

*Newsletter Photo Contest:
*Contest Winner:

*Current Book Review:

*To Receive the complete CFA Newsletter (via mail only):

First Large Population Analysis Puts Incidence of FM in New Light

The first-ever large population-based analysis of U.S. Fibromyalgia
Incidence, just released, indicated an occurrence rate of about 4.2 percent.

This is based on a review of claims records for a national health insurance database including a “large, stable” population averaging 62,000 enrollees over the period 1997 through 2002. The new large-population review, conducted by a research team at the University of Utah Department of Family and Environmental Health, identified 2,595 cases of Fibromyalgia in the overall enrollee population.

Their calculations also provide new, more broadly based statistics on:

Fibromyalgia incidence by gender. Females in the database were 1.64 times more likely than the males to have physician-diagnosed Fibromyalgia. That’s a mix of about 62 percent female and 38 percent male; a “substantially” less-marked difference than many small population-based studies had reported.

Strong associations with other, coexisting conditions. Enrollees diagnosed with Fibromyalgia were also significantly more likely than the 59,400-some other health plan enrollees to have one or more of seven coexisting conditions (“comorbidities”). As a group, based on International Classification of Diseases ( ICD-9-CM) diagnostic coding, the Fibromyalgia patients were anywhere from 2.14 times to 7.05 times more likely to have depression, anxiety, headache, irritable bowel syndrome, Chronic Fatigue Syndrome, systemic lupus erythematosus, and rheumatoid arthritis.

This report, titled “The Incidence of Fibromyalgia and Its Associated
Comorbidities: A Population Based Retrospective Cohort Study Based on International Classification of Diseases, 9th Revision Codes,” by Peter T. Weir, MD, et al., was published in the June 2006 issue of the Journal of Clinical Rheumatology, at



FM Pain & Pregnancy

“Until now there was only anecdotal evidence suggesting that women with FM had a rougher time during pregnancy,” and as a result healthcare providers often misdiagnose and under treat these symptoms as a normal part of pregnancy, says Karen M. Schaefer, DNSc, RN.
A pilot study she led recently at Temple University’s College of Health Professions provides evidence that on average a group of pregnant women with FM had a harder time functioning, felt more stiff and tired, and experienced pain in more body areas than a comparable group of pregnant women without FM.
The study, which recruited participants online, included only women in their third trimester of pregnancy, between the ages of 29 and 31, and with no history of stillbirth or any chronic illnesses other than FM. The study findings were based on detailed questionnaires covering fatigue, depression, pain, and ability to function, and took into consideration factors such as marital status, education, hours slept, and use of medication.
Next steps, says Dr. Schaefer, are to gather more information on FM’s effects during pregnancy, and identify ways to provide comfort and support. And for now, she recommends pregnant women with FM make a point of discussing their pain and fatigue with their doctor. Also, while the drugs they might normally take to ease pain may be ruled out during pregnancy, a support group can be helpful, and it’s advisable to plan for additional help during and after the pregnancy. Dr. Schaefer presented these findings at the recent 2006 Association of Women’s Health, Obstetrics and Neonatal Nurses convention in Baltimore.

CFS & Low Blood Pressure

People with Chronic Fatigue Syndrome (CFS) often show low blood pressure readings, especially after standing from a sitting position. A New York state study found that 15 CFS patients had significantly lower (p<0.0001) systolic (heart pumping) and diastolic (heart filling) blood pressure than 15 health-matched controls. Standing heart rates were significantly increased in the CFS patients (p<0.01).

When 11 of these patients wore Military Anti Shock Trousers (MAST), which increased blood pressure on their legs and moved blood up to the brain, 10 patients (91%) reported improvement of their CFS symptoms.

In addition, red blood cell volume was significantly decreased in plasma and norepinephrine levels were significantly higher in the CFS patients. Low blood pressure, especially in the brain, can cause fatigue and lack of concentration. Another study published in JAMA (1985; 274:961-7) noted that many CFS patients with low pressure reported reduction in symptoms when given a diet high in water and sodium.

Source: Tired - So Tired and the 'Yeast Connection

Intravenous Vitamins for FM
by Patrick B. Massey, M.D. , Chicago Daily Herald

Fibromyalgia is a medical condition, primarily in women, that is characterized by severe musculoskeletal pain, general fatigue and significant sleep disturbances.

It affects about 10 million people in the U.S. alone. Although there is no cure, there are a number of medications and nontraditional therapies that can help with the pain, fatigue, sleep trouble and mental confusion, called "fibro-fog."

Early clinical research indicates that intravenous vitamins might also be added to the list of effective therapies.

Although the exact cause of fibromyalgia is unknown, the current theory suggests that there might be a "sensitization" of the central nervous system to the perception of pain. This sensitization process is activated or made worse by chronic stress, illness and other chronic pain conditions.

Some early research suggested there might be a genetic shortcoming in some important vitamin B1-dependent enzymes in fibromyalgia patients. These enzymes are necessary for energy production and might malfunction even with normal levels of vitamin B1. Once the energy stores are depleted, then the fatigue, muscle pain and "fibro-fog" associated with the disease are revealed.

Intravenous vitamins have been used for a variety of medical conditions, including fibromyalgia. The theory behind intravenous vitamins is simple. Vitamins given through the veins reach higher blood and tissue levels than can be achieved by mouth. Higher vitamin levels might increase energy production through enhanced enzyme activity and metabolism.

The vitamins that are most commonly used are the B vitamins and vitamin C. These vitamins are water-soluble and are not stored in any great quantity by the body.

The earliest medical publication on intravenous vitamins and fibromyalgia was by Alan Gaby, M.D., in 2002. His was a series of case reports on his personal clinical experience and the clinical experience of the deceased John Myer, M.D. (a physician at Johns Hopkins University in the 1960s). Their data demonstrated that intravenous vitamins have a positive impact on a number of pain conditions, including fibromyalgia.

Although mainstream medicine considers any benefits from intravenous vitamins to be, at best, a placebo effect, a large, National Institutes of Health-funded study under way at Yale University is looking at the effect of intravenous vitamins on fibromyalgia.

David S. Bell, M.D., on Medications for CFS & Chronic Pain

According to leading CFS physician David S. Bell, M.D., "Learn to discriminate between the two different types of fatigue (heavy-like-a-log-fatigue, and frazzled fatigue) and use coffee judiciously, like a medication. It is the same with other stimulants, such as amantadine, Ritalin™, Cylert™, and others. If you are in a bad relapse, forget it; stimulants will usually not help at all and may make you feel worse. The sleep disorder usually parallels the type of fatigue. The worse courses have light, disrupted sleep and a frazzled type of fatigue. Avoid stimulants and use benzodiazepines or sedatives (antihistamines, Baclofen™, Flexeril™, and others) sparingly. The heavy-like-a-log-fatigue usually has better sleep and should avoid benzodiazepines and sedatives." 

Seeking Better Treatment Options For Lupus

 Maribel Ramirez, 43, was diagnosed with lupus in 1989 and started a support group in the Houston area in 1995 for Spanish speakers who have the disease. "I see people dying, and it's very difficult," she says. "We are desperate for better treatments." Ramirez has suffered damage to her lungs, kidneys, and heart. In 1994, she had a stroke due to vasculitis, a condition in which blood vessels become inflamed. "I worry about the disease and all the medications that I've been taking for so long," she says.

There are effective drugs that decrease inflammation and suppress the immune system in people with lupus, but these drugs also can lead to damaging side effects. Doctors and patients have to weigh carefully the benefits and risks of treatment. Isenberg likens treating patients with lupus to putting them on a fence between two fields.

"One side represents the effects of the disease, and the other represents the side effects of treatment," he says. For example, people with lupus are at increased risk for developing hardening of the arteries that can cause a heart attack or stroke. The risk is due partly to having lupus and partly to taking corticosteroids, which decrease inflammation caused by the disease.

Another challenge, says Petri, is that there are no treatments for two common complaints of lupus patients -- fatigue and memory loss. Ramirez says she once had to pull off the freeway and call a friend for help because she was lost, even though she was very close to home.

Source: FDA Consumer Magazine


CFS & FM Support Groups

Many CFS and FM patients find support groups to be a beneficial experience. But it is important to find the right kind of support for you. Generally speaking, a successful support group is created when there is a mutual agreement to keep the issues on a positive constructive focus, optimizing participants’ strengths. Holding this as a common goal makes it possible to unlearn obsessive negative thinking. In turn, this allows healing positive experiences to unfold. This doesn’t mean that difficulties cannot be addressed; it just means that the emphasis should be toward seeking the highest and best resolution of problems.