For Your Information
CFIDS/FMS News
Chronic Fatigue and Fibromyalgia Support Group of South West Florida
July/August 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.
July 16th – Round table discussion lead by a licensed counselor
August 18th - 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!
Roxy Barber
223 Utah Ave.
Fort Myers, FL 33905
Remember:
"Courage doesn't always roar. Sometimes courage is the quiet
voice at the end of the day saying, ‘I will try again tomorrow.’
" Mary Anne Radmacher
Letter from the Editor
Well my new treatment program of facet joint injections did not go so well, the first treatment looked promising, but the results were not long term. I did learn more about my body, and that I do have inflammation. And that steroids make me feel pretty darn good but are not a good long term option. And I must say I am convinced (for today anyway!) that a lot of the pain is neurological, from the spine or brain, but can it be fixed from there? I do no know. I only know that after several painful (and expensive) series of injections I was left with yet another disappointment and no long term gain. But as they say, onward and upward.
Connie Biddle, who has recently moved to Mt Dora, writes: Just wanted to tell you about a product i just learned of in the past week. Its called CORVALENM. Its a diet supplement of D-Ribose. Its being used to give energy to people like us, and heart patients. I found out about
it from my cardiologist, here in the Mt.Dora area. There is a lot of info about it on the net. Go to www.drcass.com or to the products site www.CORvalenM.com
Anyone else want to share a treatment or lifestyle change that has worked, or failed, for them? Call and I would be happy to write it up for the next newsletter.
Love and hope for all
Roxy Barber 693-7252 Webeinflorida@juno.com
Improve the Chances Your Treatment will Work
From: Woodlands Healing Research Center Quakertown, PA www.woodmed.com 01/01/2005
“Preparation for Treatment
· Patients must have realistic expectations about the long-term outlook and their own individual capabilities. It is important to understand that the condition can be managed and patients can live a full life. The following tips may be helpful in embarking on a treatment program for fibromyalgia:
· Patients must begin all treatments with the attitude that they are trial and error. No physician, even an expert, has a clear treatment solution, because little significant research has been conducted on this disorder. For example, there were no major trials on drug therapies for fibromyalgia reported during 2000. Patients and doctors need to work together to make the best choices for individual symptoms and concerns.
· Therapies are prolonged, in some cases life-long, and patients should not be discouraged by relapses.
· Enlisting family, partners, and close friends, particularly with exercise and stretching programs, can be helpful.
· Becoming involved with support groups of fellow-patients has also benefited many patients. Support groups may also benefit family members, particularly parents of children with fibromyalgia. One study noted that the severity of the disorder increased in children whose parents were less able to cope with their children's pain.
· Improvement is subjective, and some patients are pleased with only a 10% reduction in pain and other symptoms.”
Exercise (aarrgghhhh) to Combat Stress
I know, even the thought of exercise can be stressful! But more and more studies are finding that the long term benefits of exercise are very beneficial to CFIDS/FMS persons. The key is to start very slowly and do only as much as you can. But keep doing it!
From: Woodlands Healing Research Center Quakertown, PA www.woodmed.com 01/01/2005 Stress is the flight’fight response and chronic stress is the body not releasing this response. This article encourages us to “engage in activities that intentionally create the proper conditions, which allow the system to relax and recover even though the vague threat/demand still lingers. Exercise, healthy diet, maintaining nurturing relationships and support structures, proper rest, and cultivating a good sense of humor are all important first steps in this process. “
The article goes on to explain in simple terms how this works, and look at the side benefits! “Exercise is one of the best ways to alleviating the harmful effects of the fight-or-flight response and of using up the extra adrenaline circulating in your system. Exercise also releases morphine like compounds in your brain to produce a feeling of well-being, sometimes called a runner's high. These are the same compounds that are released during lovemaking and are called endorphins. In addition to the numerous health benefits of exercise, some authorities recommend it as a major treatment for depression! … The person with chronic fatigue syndrome should consult their health care provider on the appropriate level of exercise given the stage of their condition. “ Just Do It!
The Whitcomb Method
From:
www.newstarget.com/008247.html
and http://www.newstarget.com/008526.html
News Target, www.ImmuneSupport.com
05-04-2005 and Source: www.tahoedailytribune.com
© Copyright 2005 tahoedailytribune.com
Dr. Paul Whitcomb, a chiropractor in South Lake Tahoe, Ca, has developed a chiropractic treatment that has been successful in treating 95 percent of his fibromyalgia patients. There are currently controlled studies underway to corroborate his results. Dr. Whitcomb says, "It turns out that fibromyalgia is an upper cervical spinal stenosis, which is actually a choking off of the spinal cord structures, but not so much the spinal cord as the meninges; the coverings of the spinal cord itself. Dr Whitcomb believes Fibromyalgia is caused by physical trauma, a car accident or a blow to the head, abuse as a child, and even surgery.” Currently his treatment program takes 6- 8 weeks of treatments 2-3 times a day. It appears to work like spinal stenosis surgery without the actual surgery.. It will be interesting to watch the development of this treatment plan.
On the flip side, the experts and researchers are skeptical. More controlled studies will be needed.
"When I hear this red flags go up all over the place," said Lynne Matallana, president of the National Fibromyalgia Association. "You start using the 'c' word and I get very nervous. As far as we know there isn't a cure yet."
Dr. Muhammad Yunus, a rheumatologist and professor of medicine at the University of Illinois, reminds us of the theory that Fibromyalgia “is a neurochemical disease - a chemical imbalance causing hypersensitivity in the nervous system that amplifies pain. Trauma to the neck can trigger fibromyalgia, but so can stress, genetics, poor sleep and infection.
Rae Marie Gleason, executive director of the National Fibromyalgia Research Association says she is glad Dr. Whitcomb is helping people, "But remember these people have gone to so many doctors who told them they are crazy and that if they wanted to get well they could get well. So if they find a doctor who understands their problem and reassures them he can get them better, they believe the doctor." Dr. Whitcomb had Fibromyalgia himself.
One testimonial from a Whitcomb Method patient is backed up by her regular doctor. "She's almost completely pain-free, sleeping through the night and not requiring any pain medication. She tried pain medicine, physical therapy, message, acupuncture, and that did not help. His manipulation I'm not familiar with, so it's hard to judge what's being done. But it works."
Mary Glass, a chiropractor in South Lake Tahoe, said she can provide relief for fibromyalgia patients through adjustments of the spine, but her treatment also requires dietary changes and exercise.
"I see that in all my fibromyalgia patients, some kind of trauma, a fall or head injury," Glass said. "I don't believe that's the only thing. I've seen through my own experience since 1986 that fibromyalgia is an accumulation of different faults. I think if you just do that adjustment and don't address other factors, it's going to return."
The American Chiropractic Association says research shows fibromyalgia can be treated through Chiropractic. "Of the scientific papers published in the last five years definitely some are supportive of the chiropractic treatment of this disease," said Angela Kargus, communications manager for the association. "Studies have shown that treating it is really within the realm of chiropractics."
Your Health Choice Freedom and CODEX
From: www.alliance-natural-health.org/ Alliance for Natural Health
International award-winning filmmaker Kevin P. Miller has released a new documentary about the threat to freedom of choice in health care. 'We Become Silent: The Last Days of Health Freedom' explains attempts by multinational pharmaceutical interests, giant food companies, Codex Alimentarius Commission, the European Union, the WTO, the WHO and others - to limit the public's access to herbs, vitamins and other therapies. "If we don't defend our health freedoms, they will be lost - and nothing would make the drug companies happier than to have free rein over our health."
During the 1990s, Miller's film, 'Let Truth Be The Bias', narrated by James Earl Jones, created massive public support for the Dietary Supplement Health Education Act (DSHEA), which upheld U.S. consumers' rights to health alternatives, and highlighted the government's role in covering up truths about the effectiveness of alternative and complementary medicine.
You can view the 30minute documentary on the website, or order a copy from www.welltv.com/ The website also has guidelines for helping keep our health choices available
Laughter is the Best Medicine
Prayer for the Day
Dear Lord,
So far today I am doing all right.
I have not gossiped, lost my temper or been greedy.
I have not been grumpy, nasty, selfish or self indulgent.
I have not whined, complained , cursed or eaten any chocolate.
But I will be getting out of bed in a minute,
And I think that I will really need your help then.
Websites and Books
Besides our own library of books, videos and other literature which can be checked out at the meetings you may find the following helpful.
(Thanks to Terry Connor who totes this considerable load back and forth every meeting!)
http://www.woodmed.com/CFS%20&%20FMS%20Handout.htm Woodlands Healing Research Center Quakertown, PA www.woodmed.com This page has a very comprehensive description of CFIDS/FMS and the variety of treatments available.
www.AACFS.org/ American Association for Chronic Fatigue Syndrome, c/o Harborview Medical Center, 325 Ninth Avenue, Box 359780, Seattle, WA 98104. Call (206-521-1932) Formed by health professionals to promote dissemination of information on CFS.
www.cfids.org The Chronic Fatigue and Immune Dysfunction Syndrome Association of America, PO Box 220398, Charlotte, NC 28222-0398. Call (800-44-CFIDS or 442-3437)
www.fmnetnews.com/
Fibromyalgia Network, PO Box 31750, Tucson, AZ
85751-1750.
Call (800-853-2929) The FM Network offers
information on support groups, and health care specialists by area.
Their web site has useful advice and information.
www.co-cure.org The name "Co-Cure" stands for "Cooperate and Communicate for a Cure." Our Focus: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) & Fibromyalgia
www.fmaware.com The National Fibromyalgia Association To develop and execute programs dedicated to improving the quality of life for people with Fibromyalgia by increasing the awareness of the public, media, government and medical communities.
From Fatigue to Fantastic, Dr. Tietelbaum, From Fatigued to Fantastic is a comprehensive resource guide for individuals who suffer from CFIDS and fibromyalgia. It explains what these disorders are, what their symptoms are, where they may come from, and how you can eliminate them. Specific guidelines for diagnosis and treatment for both the patient and the physician.
Web Site, www.endfatigue.com
The Physician Within, A Step-by-Step Guide to Living Well with Chronic Illness, by Catherine Feste. Henry Holt & Co. New York.
Deep Healing: The Essence of Mind-Body Medicine, By Emmett E. Miller, M.D., Hay House, 1997
www.drmiller.com/index.html Educational Tools and Techniques for stress management and self care, for deep healing of your body, mind, emotions, and spirit.
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 239/242-6388
Terry Connor 239/945-1247
I wish to donate the enclosed amount to help with the costs of the Cape Coral CFS/FMS group. Any and all donations are appreciated. $________________________________