CFS/FMS News May / June 2003
Chronic Fatigue and Fibromyalgia Support Group
of South West Florida
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 !!!!!!! thanks to Ken Schneider.
Local and Group News
Funding needed. Not only is our checking account dwindling for newsletter publication but we need extra funds to bring in some great programing to you.
What you can do.
Send donations for newsletter and other ongoing expenses.
Create fund raising opportunities. This will require effort on the part of others than the usual few that organise us on a monthly basis. Maybe in your other life you did this, or know someone who can help or have some ideas of your own.
Find a co-sponsor. Corporations, local small businesses and other patrons do exist out there with money to spare for a good cause. A co-sponsor could support a speaker, a newsletter or two, donate money or equipment and supplies. (Copies and stamps, literature and videos)
Write a grant. There is money out there and there are people who can help us get it! Grant writing is done buy a lot of other not for profit groups, maybe someone in another organization you belong to can help us out there.
Send me your e-mail address and save a lot of money on printing and mailing costs!
Congratulations and welcome to Mary Gallager who has volunteered to do PR notices to all the papers including Naples.
Another congratulations to Carol Greenfeild who has volunteered to do small tasks. We’ll be callin’ ya Carol!
Thank you to Kay Ferguson of Women Helping Women who has donated literature and video tapes; CNN series ‘Chronic Fatigue Syndrome, Unravelling the Mystery; and Living Hell, the Real World of Chronic Fatigue Syndrome. This last one is great to share with those who want to know what we go through, or perhaps with those who don’t!
Visit our very own web site at www.CFS-FMS-FL.org !!!!!!! thanks to Ken Schneider.
Love and Hope for All, Roxy Barber
Cape Coral, FL 33904
webeinflorida@juno.com
Reversing Fibromyalgia with Guaifenesin
Our thanks to Dr. William Dakos of the Fort Myers Center of Fibromyalgia, for speaking to us at our March meeting. Attendance was good for this event and Dr. Dakos and his wife made us all feel comfortable asking questions.
The guaifenesin treatment Dr Dakos uses is 85% successful in clearing Fibromyalgia. The usual medications prescribed for Firbro depress the Central Nervous System and cause fatigue and mental confusion and do not attack the cause of the problem. Dr. Dakos explains that there is an error in the transport of phosphorous and it accumulates in the muscle and brain. Phosphorous carries calcium to a form of potent salt, that attracts fluid int the muscle and compresses nerve fibers. Stimulation overworks the system, causes exhastuion and lactic acid accumulates. Guaifenesin pulls phosphates out of tissues to the blood stream and into the kidneys to be eliminated. Salycilates block receptors in the kidneys and prevent guaifenesin from doing it’s job in eliminating phosphorous. That is why the avoidance of salycilates is so important to treatment.
Other syndromes and disorders that interfere with treatment are irritable bowel syndrome, hypoglycemia, hypothyroidism, Epstein Barr virus and general allergy. Dr. Dakos treats all of these before beginning the treatment with guaifenesin. You cannot feel better if these underlying causes are still there. Allergy’s main symptom is fatique, the thyroid is critical in energy production and the bowel is a large volume of the body that affects sleep, pain, and relaxed muscles among other things. Almost 60% of serotonin is made in the gut, serotonin being one of the body’s natural pain relievers. The bowel can be treated in 2-3 weeks.
The 15% of people who are not helped by guaifenesin treatment have either not followed the salycilate avoidance plan or remained on their pain meds, which also interfere with treatment.
On sleep Dr. Dakos states the sleep meds are only meant to be used for 7-10 days to reestablish a sleep pattern. Most are prescribed for long term use, but along with alcohol, barbiturates, benzodiazopines and narcotics, they disrupt the sleep pattern and prevent the brain waves needed for refreshing and healing sleep.
On the theory that CFS and FMS are overlapping conditions Dr. Dakos agrees. He pointed out a few differences that are coming up in research, for example elevated levels of Substance P (a pain amplifier) found in the spinal fluid of FMS sufferers is not found in CFS sufferers. But differences are not diagnostic. In this case other conditions have elevated levels of Substance P also. And not everyone is tested for some of the research criteria, so the criteria we hear about from studies cannot be used for diagnosis.
Dr. Dakos has also had success with treating for virus using influenza virus vaccines. Epstein Barr, abrupt onset CFIDS from virus, herpes cold sores, mono, adult chicken pox, hepatitis B and shingles. If any of these causes underlay your FMS or CFS it would help to clear them up too.
A question and answer period produced the following:
Calcium supplements are ok and do not block guaifenesin
Hypothyroid can be simply tested for and treated within 1 week
Guaifenesin treatment takes about 1 year for the Fibro to clear, or less, but there is a wide variance of response.
Dr. William Dakos of the Fort Myers Center of Fibromyalgia, 2017 Maravilla Lane, Fort Myers. 239/939-7017
Healing Reiki
Reiki is a form of energy medicine developed in Japan in the 1800’s, Reiki (pronounced “ray-key”) means universal life force or vital energy. Reiki is a simple, quiet, non-invasive therapy that can be conveyed by light touch and at a distance. Reiki is thought to be most effective for improving pain and pychological well being, while appearing to have few, if any, adverse side effects. Low risk, low cost and patient empowering Reiki is used in conjunction with Western medicine. Offered in many hospitals, hospices, psycotherapy practices, there is currently a study being done and the University of Washington, Department of Medicine to find out if Reiki is a helpful treatment for FM and it associated symptoms. From a University of Washington web site by Nassim Asserfi, MD
Editors note: Locally Reiki is available from many practitioners in the area as well as massage therapists, chiropractors and some doctors. I was initiated into Reiki about 2 years ago and use it to help calm muscles, reduce pain and fatigue, relaxation and any number of little uses I need it for throughout the day. I can also treat friends, family and pets when needed. I like to think of it as a re-aligning of the energies that are already there in all of us to make our bodies, minds and souls flow smoothly. For more information call me or local Reiki teachers Karen and Neil Kagan at 239/332-3885. Or stop by for a demonstraion at one of our Reiki Healing Nights, free to the public and usually held the second Saturday of the month at the Health and Harmony Center. If nothing else you will get relaxed!
Disability Law
Read this even if you are not disabled!!!!
Review of article in Fibromyalgia Network, July 1999. Tectonic Changes in Disability Law.
The title is tongue-in-cheek reference to the speed with which disability laws are changing since the recognition of both CFS and FMS. (Tectonic plate changes in the earth take millennia to move, but the long term impact is huge.) In 1999 a policy change, SSR-99-2p, made CFS and FMS syndromes ‘medically determinable conditions” “But the application rests on the ability of the individual to demonstrate that other regulations have been satisfied”. SSR-99-2p will need “superior charting and greater attention to detail, especially by physicians as well as patients. Testimony will have to be more concise and narrowly focused.” By charting they mean historical medical records that detail the tracking of failed therapies as well as documentation of symptoms and function. It would also include work history. The constellation of symptoms needs to be featured in the chart. Document now to make your medical and work status meet the requirements. You may need this in the future, even if you are feeling strong enough now to work. Reviewers will look at the past 12 months before application.
Visit your FMS/CFS physician 3 times a year and bring a list to be included in your medical record.
Do the same anytime you visit any health care provider, gynecologist, naturopath, chiropractor, physical therapist, occupational therapist, counselor, etc.
Keep your own journal, diary or notes of symptoms, problems and function levels.
Make sure your diagnosis meets the criteria needed for your condition 6 consecutive months.
Other tests; elevated EBV, abnormal MRI, neurally mediated hypotension, abnormal sleep studies, exercise intolerance.
Educate Your Self
Good Doctor list from Co-Cure.
Disclaimer: the “CFS & FM Good Doctor List” is provided as a convenience to CFS/CFIDS/FM patients. Co-Cure has not verified any of the information submitted for the purpose of inclusion on this list and provided herein as to accuracy nor professional standings. As always, patients should check with local/regional agencies that monitor physicians prior to engaging services/treatment.
Marco Island
Dr. Richard A. Saitta, 1010 Barfield Dr., Marco Island, FL 34145
Tel: (941) 642-8488 (He has been treating CFS and Fibro patients for over 10 years)
Sarasota, FL
Dr. Small, Rheumatologist, 3500 S Tamiami Trl., Sarasota, FL 34239
Tel: (941) 365-0770
Tampa, FL
Dr. Robert Casanas, 3218 Azeele, Tampa, FL
Tel: (813) 876-7523
Michael Cichon, M.D., 9804 N 56th St., Tampa, FL 33617
Tel: (813) 985-5513 (Recommended by the Florida CFIDS Association.)
Laughter is the Best Medicine
AIN'T IT THE TRUTH!!
And We Survived
Looking back, it's hard to believe that we have lived as long as we have.
As children, we would ride in cars with no seat belts or air bags.
Riding in the back of a pickup truck on a warm day was always a special treat.
Our baby cribs were painted with bright colored lead based paint. We often
chewed on the crib, ingesting the paint.
We had no childproof lids on medicine bottles, no locks on doors, or cabinets,
and when we rode our bikes we had no helmets.
We drank water from the garden hose and not from a bottle.
We would spend hours building our go-carts out of scraps and then rode down the
hill, only to find out we forgot the brakes. After running into the bushes a few
times we learned to solve the problem.
We would leave home in the morning and play all day, as long as we were back
when the streetlights came on.
We played dodgeball and sometimes the ball would really hurt.
We ate cupcakes, bread and butter, and drank sugar soda, but we were never over
weight; we were always outside playing.
Little League had tryouts and not everyone made the team. Those who didn't had
to learn to deal with disappointment.
Some students weren't as smart as others so they failed a grade and were held
back to repeat the same grade.
That generation produced some of the greatest risk-takers and problem solvers.
We had the freedom, failure, success and responsibility, and we learned how to
deal with it all.
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
Yes! Please save us some money and send me my newsletter by e-mail.
Send a request to Roxy at ... webeinflorida@juno.com
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Mail to (or bring to next meeting):
Roxy Barber
4114A S.E. 18th Ave.
Cape Coral, FL 33904