CFS/FMS News March April 2004
of South West Florida WWW.CFS-FMS-FL.ORG
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.
March 20 – Round table discussion lead by a licensed counselor
April 17 - 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.
Visit our very own web site at www.CFS-FMS-FL.org
Roxann Barber
4114 S.E. 18th Ave, Unit A
Cape Coral, Florida 33904
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
As I write I am having as flare up of symptoms due to virus complications. Every year at cold and flu season my coworkers call me the ‘Bubble Girl’, because with my compromised immune system from Fibromyalgia, I am sure to catch them all. This year a series starting at Thanksgiving left my adrenal glands exhausted and I have been battling something akin to chronic fatigue. With Fibro I am always tired and out of energy but I never realized how extensive the fatigue component can get. I know how to live with pain but how do you live with this all consuming fatigue? It makes me realize that no one can know what we really experience on a day to day basis. The words pain and fatigue do not mean anything at all compared to what we really encounter every moment. That is why it is so important to educate the public about our conditions. No one can really know when we just say ‘Fibromyalgia is a pain condition’ or ‘CFIDS causes profound fatigue’. Each of us needs to relate our own stories and experiences, never mind the scientific descriptions. Family, friends and coworkers need to understand that we are not just tired or sore. Our doctors need to hear how our daily lives are compromised. Little by little our ‘syndromes’ gain attention with the medical community. Little by little we must tell them, no one else can. Silence is not golden, understanding is.
Love and hope for all, Roxy Barber
239/541-3429
Who’ll Stop the Pain?
In this article author Michael Castleman peers “Through the looking glass world of fibromyalgia (FM) and chronic fatigue syndrome (CFS)” to find that today there is hope. “Recovery is possible, says naturopathic doctor Christian Dodge, N.D., of the clinical faculty at Bastyr University, the naturopathic medical school near Seattle, However, ‘ there is no single therapeutic program that words for everyone.’ Says Dodge. ‘People have to experiment with a broad range of approaches.’” Effective treatment will include both mainstream and alternative approaches. “What matters is that they help.” Dr. Jacob Teitlebaum, M.D., director of the Annapolis Maryland, Center for Effective FM/CFS therapies and former CFS sufferer, prescribes some pharmaceutical medication, exercise once you’re feeling better, and vitamins, herbs and “whatever works”.
The article goes on to explain the mystery and history behind these disorders. It also states that recent research is beginning to pinpoint some of the biochemistry associated with the conditions. Cedars Sinai researchers have come to believe they result from and alteration of brain chemistry. Teitelbaum suspects a malfunctioning hypothalamus, “the brain’s master gland”. Chinese medicine has a similar view that symptoms “point to a disrupted relationship between the Heart and Kidney organ systems” (energy meridians), “similar to the hypothalamus-pituitary axis in western Medicine.” All theories are still controversial as no single cause has been found. The most important thing is getting well again.
Diagnosis has become easier and faster over the years. The illnesses have received considerable publicity and recent diagnostic tests can show specific physiological abnormalities. FM involves an over production of a protein involved in pain, substance P, and CFS often shows hypothalamic and pituitary abnormalities.
For many with FM or CFS lifestyle changes, hard work and some medications can produce a good life, if not the old life that was destroyed. People do get better. “Just as there are ways to rewire a house to keep the fuses from blowing, there are different ways to renormalize the brain chemistry of people with FM/CFS. A big part of what I do is persuading people that there’s hope. It’s true, there is.” Says Teitelbaum.
The many methods of finding that hope mentioned in the article are listed below. These are not the only methods, just a sampling. Each deserves individual consideration, not one thing will work for all. And no one thing will work for anyone. Recovery involves a multifaceted, integrative approach. The article goes into more depth on some of the modalities recommended. (Be sure to check for contraindications of reactions between natural and pharmaceutical treatments.)
Pain Relief; ginger tea, capsaicin cream, glucosimine, essential fatty acids, acupuncture, biofeedback, massage, foot reflexology, Chiropractic, bodywork, homeopathic, nonsteroidal anti-inflammatory drugs, COX-2 inhibitors, muscle relaxants, topical anesthetics and narcotics.
Sleep Normalization; follow a regular schedule, sleep retraining, stress management, meditation, hypnotherapy, warm baths, melatonin, valerian, chamomile, lemon balm, hops.
Treat any underlying diseases; antibiotics, antidepressants, antifungal medications, hormonal imbalances.
Exercise; try these a little at a time and do only what you can, but do it. Walking, yoga,
Diet modifications; some people feel better when eating or avoiding certain foods. Food intolerance can aggravate symptoms of FM/CFS. Some foods to avoid are wheat, dairy, eggs, nuts, and soy products.
Supplements; Multivitamin with B’s, magnesium, malic acid, coenzyme Q10, L-cartinine, iron all have shown positive results.
Support; Emotional and social support are essential. Support groups, internet chat groups, friends and family, faith based organizations.
Willingness to experiment; It is crucial to be open-minded about treatment options. Try them one at a time to see what the effects are. Give them a fair chance to work.
“Who’ll Stop the Pain”, Michael Castleman: Body & Soul Magazine, March 2004, pg 82-85, 104-106
Time with your Significant Other and your Family
From FM Online Newsletter. National Fibromyalgia Association. Vol. 4, No. 2 – February 25, 2004
“Fibro-friendly” Activities; Time with your significant other and your family. Diane R. Issacs, Ph.D.
This article stresses that Fibromyalgia is a ‘family disease’, being a pain, in more ways that one! Strengthen your relationships with open communications (don’t’ let the family be in denial) and healthy activities you can do together. The following activities can give you inspiration, build your strength and help you share time with your loved ones.
Dance - You don’t have to tango, but join a neighborhood group and learn folk dancing. Dancing gets endorphins moving, provides an opportunity for fun and touch and is a form of communications.
Exercise – Motivate each other and share the sensory stimulation as well as the loosening of muscles and joints. Keep it at your level and timing and enjoy a massage or hot tub together after.
Walk in nature – The beach, park or around the yard. Get other couples involved and steer clear of isolation.
Massage – A stress reliever to be done by each other or professionally. Address tender points, and tight muscles. Sharing sensory touch can quiet your breathing and induce relaxation. Drink water after to eliminate the toxins that get stirred up.
Relaxation – Yoga, mood music, visualization, step outside yourself for a moment.
Nap – Allow yourself a nap, bring along a friend! Keep it to about 20 minutes and you won’t wake groggy.
Healthy eating – Set a goal of eating healthy together. You will all feel better and inspire each other to stick with it!
Learn – It is important in any relationship to understand the other persons needs. Learn and discover together what special needs have been created by Fibromyalgia. Address the needs of all concerned. Learn and discover together.
“Life is a journey, and it is the path that we choose, that lights our way. We have the choices. Fibromyalgia can lead your life, or you can manage and lead Fibromyalgia. Don’t let it take over your life. Live your life.”
Disclaimer
The Chronic Fatigue and Fibromyalgia Syndromes Support Group is a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. This newsletter does not dispense medical advise not is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and will assume no responsibility for any treatment or activity undertaken by readers.
Contact
Bonnie Dewar 239/543-2812
Terry Connor 239/945-1247
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