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It's Helped Me!
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Therapist Select Professional Percussion Massager
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Barbara reports that the "Therapist Select Professional Percussion Massager"
by HoMEDICS is "the best thing for pain since Morphine." It has two rubber
knobs that pound rapidly on the muscles, which is far more effective than
the usual vibrating motion. Her chiropractor recommended it. Many other
group members have found it very helpful. It's available at WalMart.com.
for $39.95. It's on their "Small Appliances" aisle.
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Community Based Alternatives
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Becca has discovered a tremendous resource that provides help for the homebound
facing financial difficulties. "Community
Based Alternatives" is the name of a state program designed to avoid
the cost of state nursing home care by providing assistance that enables
homebound patients with limited incomes to remain at home. Even those who
have no desire or intention of seeking nursing home care may qualify if
they meet the criteria. Becca, who lives with her parents and is largely
homebound, now has a non-medical caregiver 12 hours a week who cleans and
cooks, monthly visits by a nurse, unlimited prescription coverage, asistance
with hospital bills, up to $7500 of home renovations to accommodate her
disability (ramps, additional hardware in the shower, etc.), and medical
equipment, including a new bed. This is at no cost to her and it's all
paid for by the state. Her benefits amount to $33,0000 a year, and this
does not even include the cost of prescriptions or the renovations to her
parents' home. Similar programs exist in most states. Call social services
in your county for information
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Comfort Keepers
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Joy reports that "Comfort
Keepers" provides transportation to appointments and non-medical in-home
care (cleaning, cooking, laundry, errands, shopping, etc.) Comfort Keepers
provides caregivers for approximately $15.00 an hour, with a two hour minimum.
Call 817 281-6789 to arrange for their services.
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Magnets
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Steven, a member of our group with CFS/FM, reports that he used to have
a lot of FMS pain. A friend introduced him to a Nikken
sleep system (magnetic technology) and in less than two weeks most
of the pain was gone. He can now raise his left arm above his head without
any discomfort and spend hours on the keyboard. Being a skeptic, he got
off of the system for about a week and the pain returned. But it again
went away after getting back on the system. The only discomfort he experienced
was a detoxing effect produced by the magnets (feeling like a cold is coming
on). Steve reports that this particular technology is patented and is different
from other magnetic items in many stores. Nikken makes many different products,
including elbow and knee wraps. For more information contact Steven at
smboyd1213@cs.com.
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ADD and FM
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After years of FM, Patsy S. is now pain free. She and others in her support
group discovered that those who have ADD in addition to FM often respond
remarkably to certain drugs. Her story
or by contacting Carol Sieverling.
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IMUPlus
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Carol, our group leader, is experiencing
significant improvement on IMUPlus, a supplement recommended by Dr. Cheney.
This product works to restore the detox pathway and antiviral/antimicrobial
mechanisms. Available from NEEDS
(1-800-643-1380) it is $82.50 plus shipping and handling for 60 packets.
Although two packets daily are the recommended dose, Carol initially crashed
on this amount. She dropped to half a pack, then very slowly upped the
dose to two packs daily. She believes it has made more difference than
any other treatment.
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Stephen's Protocol
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Stephen reports that before beginning
his protocol, he could only work less than ten hours weekly. Now he can
work an average of 30 hours a week. Over time, his protocol has built to
include a multitude of both drugs and nutritional supplements. Since viewing
the tape of Dr. Cheney's seminar he has begun Immunocal, Ultra Clear Sustain,
and hydroxcyobalamin B-12 injections and seen noticeable improvement.
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Hydrotherapy
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Jane, a former leader of an FM group in Dallas, reports that the Hot Springs
Spa they had installed in their home is a tremendous benefit. With a prescription
from her doctor, they paid no sales tax and wrote it off as a medical expense
on their income tax.
She has also found significant relief from Aqua
Med, a specialized form of hydrotherapy. The patient lies on a vinyl
"bed" while hot water swirls underneath. Different speeds are a feature
of the machine. She compared it to a non-invasive massage, only better!
Twenty minutes two or three times a month is recommended. It costs about
$20 for twenty minutes and is available at clinics in Ft. Worth, Plano,
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SalonPas
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Cindy uses SalonPas
to keep her FM pain under control. It's an over-the-counter pain patch
that works six to eight hours and helps her keep working full-time. If
a pharmacy doesn't have it, they can usually order it. In addition to smaller
patches, they make a large 5" by 7" patch. The active ingredient in the
large patch is capsicum (or capsaicin), a powerful painkiller derived from
chili peppers that blocks substance P, a neurotransmitter involved in pain
perception. (Research shows that most FM patients have two to three times
the normal levels of substance P.) The glossary section of thedefunct website
"Smartbasics" referred to tests using capsicum in which 75% of patients
experienced relief from pain, often dramatic and long lasting. The website
also referred to a capsicum cream called Zostrix that was available only
by prescription but is now over-the-counter. Similar creams may have more
capsicum in them, so it pays to compare. The glossary of Mother
Nature also had info and research abstracts on capsicum.
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Health Formula sGH-Xtra
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Kay Braun has been helped tremendously by a new treatment developed by
her neurologist in Houston. The product is called Health Formula sGH-Xtra.
You can contact her at 817-306-1036 or kaybraun@earthlink.net
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Usana
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After trying all sorts of drugs, vitamins and supplements with little or
no success, Laura Dutton is experiencing amazing results with a product
made by Usana. Usana is a scientific nutritional research company whose
lab is headed by 12 PhDÃs. Laura reports that it's products are
listed in the 1999 PDR (Physician's Desk Reference.) You can contact Laura
at 817-281-7264.
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Muscle Pain
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Suzanna shared a great idea at a recent meeting. If talking on the phone
becomes painful for neck and shoulder muscles, get a headset phone. They
range from $30 to $70. Radio Shack seems to have frequent sales. She has
also found that SPORTSCREME, a topical analgesic, really helps aching muscles.
Soaking in epsom salts before bed helps her sleep, and a heating pad helps
those muscles all day long.
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Computer Use
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Joy has difficulty sitting for any period of time, making it difficult
to use a computer. With WEBTV she can lie in bed or on the couch and access
the internet or e-mail. It uses your TV, so you don't even have to buy
a computer!
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Headaches
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Dave has had great success stopping those CFIDS pressure headaches with
the glaucoma medication Diamox (200mg). One in the morning and one in the
evening, or as needed, can make a real difference. Diamox is affordable
and has few side effects.
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Imitrex
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An FM patient shared on the internet that she has experienced significant
benefit from water aerobics.
She also finds that an injection of Imitrex not only eliminates her
migraines, but also eliminates her fibro pain for days. Since it's a serotonin
uptake inhibitor, there could easily be a causal relationship. |
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Typing
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Do your hands and arms ache too much to do any real typing on the computer?
When we last checked, for $35 to $50 you can get ViaVoice 98. You speak,
it types.
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Klonopin
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CFIDS specialist Charles Lapp surveyed his patients: If you were marooned
on an island and you could only take one drug, what would it be? The almost
unanimous answer was Klonopin.
Lapp prefers it over other benodiazapines because of its rapid onset and
long-acting effect. He recommends 0.5 to 1.5 mg at night. It helps with
sleep disorders, including restless leg syndrome and periodic limb movement.
He uses supplemental magnesium glycinate with the Klonopin. Both help put
the nervous system (i.e. brain) back in balance between GABA receptors
and NMDA receptors. CFIDS brains are shifted toward NMDA, (excitatory,
sleep disruption, pain enhancement, sensitivity to noise and light) and
away from GABA (sleep enhancer, pain inhibitor, etc.) The extreme GABA
state is coma, the extreme NMDA state is seizure. Many people in our group
have found Klonopin and magnesium to be of real benefit.
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Bounce Back Chair
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In the waiting room of Dr.
Cheney's office is the most interesting looking contraption: a tall
bungee cord-like chair. It's fun to use and very, very good for CFIDS patients.
It's a Bounce Back Chair, and it's the best form of exercise for those
with CFIDS. Non-vigorous bouncing for ten to fifteen minutes every other
day is best. Lesser ill patients can add aerobic exercises between five-minute
periods of bouncing per the video tape instructions. Its advantages include
correcting dysautonomia, the dysfunction of the autonomic nervous system
that underlies many of our symptoms. The chair was studied by NASA to treat
astronauts returning from orbit who fainted upon standing. It also improves
immune regulation by pumping lymphatic fluid back into the blood stream.
Lymph acts just like gamma gobulin. This form of exercise was shown by
NASA to be 68% more efficient as an exercise than running. "Efficient"
means maximum gain for minimum effort. Contact Carol
for more information.
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Traditional Exercise
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In general, when it comes to traditional exercise, Cheney recommends that
we find the boundaries of what we can do and then stay within them. Both
trying to do too much and pulling back and doing too little are counterproductive.
Aerobic exercise can dramatically worsen this disorder. (Any sustained
activity that raises your heart rate and increases your oxygen flow is
aerobic running, walking, swimming, etc.) The aerobic system is injured
and free radicals generated in the mitochondria by exercise may not be
detoxified, causing permanent damage to the mitochondria.
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Anaerobic Exercise
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Anaerobic exercise is better tolerated. Weightlifting, isometrics, and
stretching can maintain muscle tone and strength and improve the elimination
of toxins formed by the anerobic pathway itself. Use muscles (weight-lifting
or isometrics) for 10 seconds then rest for 60 seconds. Repeat for each
muscle group. Do lift/rest cycles no more than 20 minutes 3 times a week.
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