*** DOMINIE'S NEWSLETTER (PAGE
2) ***
SEPTEMBER 2003
DISCLAIMER: I am not a medical doctor. I am
a fibromyalgia/chronic fatigue syndrome survivor. The purpose of this newsletter
is not to diagnose or cure any disease or malady, but is presented solely as
food for thought. This information cannot take the place of professional medical
advice. Any attempt to diagnose and treat an illness should come under the
direction of a physician
15. NEED
COMFORT AND UNDERSTANDING?
From a newsletter reader--
"I found this wonderful site http://www.restministries.org
It was just what I needed. I ended up til 5 a.m. reading everything
on it. I wanted to share it with you fibro-friends of mine, so let me know if
you like it. Am hoping you are all having a pain-free day today, if you
aren't, click on this site, and wow, we are not alone, and a LOT better off than
some of these people. It really helped me, and I hope it does you,
too."
16. LIGHT
BEHIND THE KNEES (revisited from August issue)
Two readers responded to my
question--
"yes i remember this article......actually i
saw it on television on the news....it was in regard to sleeping........have you
found the article......i would like to read it again!!!!!"
[NOTE FROM DOMINIE: If anyone has located this on the net, could you
please write me at dom@fms-help.com and I'll get it in the next
newsletter.]
"REGARDING YOUR COMMENT ABOUT THE LIGHT ON
THE BACK OF THE KNEE: I, TOO, REMEMBER THAT EXPERIMENT. IT CONCERNED THE
'SEASONAL AFFECTIVE DISORDER' OR S.A.D. THE LIGHT WAS SUPPOSED TO CLEAR UP
THE DEPRESSION FROM THE DISORDER. ALSO, HERE IS SOMETHING ALONG THOSE
LINES THAT I BELIEVE HAS HELPED ME WITH MY SLEEP AND DEPRESSION: I HAVE
BEEN USING SPECIAL LIGHTBULBS THAT SIMULATE NATURAL DAYLIGHT. (I'VE FORGOTTEN
WHAT THEY ARE CALLED BUT THEY CAN BE ORDERED FROM THE VERMONT COUNTRY CATALOG
AND OTHER MAIL-ORDER CATALOGS.) I'VE NOTICED THAT I DON'T FEEL AS
DEPRESSED AS I DID BEFORE I STARTED USING THEM. ALSO, MY SLEEP IS MUCH, MUCH
BETTER TO WHICH I ATTRIBUTE THREE FACTORS: 1. THE LIGHT BULBS, 2. THE IMMUNE
BALANCING SHAKE, 3. CUDDLE-EWE
UNDERQUILT."
17. ALUMINUM
AND FIBRO (revisited)
A newsletter reader sent this response to a
question a reader asked in the August issue (if aluminum could cause
fibro)--
"I've heard of a rare disease possibly caused
by aluminum ingested in
small amounts over time from beer and pop cans.
Can't remember the name
but it causes lymph nodes to form and grow in odd
places in the body
like the stomach and bowels or other organs. A
friend of mine had a
step-dad who recently died from it. And aluminum
oxide is used for anti-perspirant as well, but not found in
deodorants."
18. NEURONTIN
(revisited)
"I was also prescribed this drug, which is an
Anticonvulsant & I must admit that it did help with:
1. The severe burning pain that I
have with FMS
2. It has also helped me with the
overall general pain, esp. the neck muscle pain
3. Think it also helped with
getting more sleep
4. Also - with the really severe
chronic fatigue
5. Also helped elevate the chronic
diarrhea that I had constantly (about 20-50 times a day). I was
spending more time in my bathroom than
anywhere else.
While I was taking it, I really didn't notice if it was
doing anything for me, but since I have stopped, due to the high cost, now I
know that it did ----- in fact, help a lot. I also stopped taking it, (all
of a sudden, which you are not suppose to do) when my last prescription ran out
& did NOT experience any withdrawal effects from it. I also did not
experience any negative side effects while I was taking this drug
either. Despite that this is an anticonvulsant medication, many
pain management specialists do prescribe it for other CHRONIC
ILLNESSES - ie - Fibromyalgia. So, I just wanted to say that anyone
who is prescribed this medication should give it a chance, because maybe it
just might help them, regardless of some of the negativity from other FMS
patients because maybe their situation is not as severe as someone elses, as
mine is. In fact, my SPECIALIST said that he has never had such a severe
case of FMS as in mine. I also have every complication
that has been written including the 18 tender points + 6-8 more. I have
just recently noticed that FMS is now being put in the category of an auto
immune disease, such as Lupus & MS."
"While reading the Aug. newsletter, #22
(Neurontin) caught my attention. Please advise your readers not to
flush medications or caustic materials down the toilet or sink drain.
Doing so reintroduces caustic chemicals into the water system or into the ground
if rain storms allow sewage water to infiltrate land. Like hormones in
meat, the chemicals are not all filtered out by sewage plants. Thank you
very much. I would not care to have Neurotin in my drinking
water! For that reason, we installed a reverse-osmosis
system."
19. SLEEP
AND THE IMMUNE SYSTEM
Simply getting enough sleep each night can
make the difference between a strong immune system and one that leaves you
vulnerable to illness. Sleep is important for both emotional and physical health
and is essential for immunity. If you miss even a single night's sleep, your
immune system will suffer. In one study conducted at the San Diego Veterans
Affairs Medical Center, it was found that a lack of adequate sleep for even one
night can dramatically reduce NK (Natural Killer) cell activity the following
day. [Editor's note: NK cells are the immune system's frontline of
defense.] Source: Immunotics: Your Personal Immune-Boosting Program, by
Robert Rountree, M.D., and Carol Colman.
[NOTE FROM DOMINIE: Lack of
restorative sleep is one of the main problems for fibromyalgia patients. I
sometimes wonder if this worldwide epidemic of FMS/CFIDS/INSOMNIA is the
result of mycoplasmas infecting the hypothalamas gland which regulates the
systems of our body. Mycoplasmas are mutated viruses and bacteria that are
in our environment due to toxins and also biological warfare testing, which is
being done worldwide, including in the U.S. In the past 7 years,
I have heard from people on every continent who are suffering from
identical symptoms--despite vast differences in culture, climate, diet and
other factors that one might think would be relevant. If anyone reading
this has tried Xyrem, the new drug related to GHB (which is considered
dangerous), please write me at dom@fms-help.com I am interested to know if this helps sleep in
fibromyalgia/insomnia patients. Xyrem (and GHB) stops alpha wave
intrusion into sleep patterns and increases delta wave sleep. Researchers
are now experimenting with Xyrem for fibromyalgia. Since being on the
immune balancing shake for the
past 2+ years, my sleep has greatly improved, although I still take mild sleep
meds at night. I have only been sick once since using the shake (I caught
a virus for a few days after Christmas last year). Prior to this, I had
been sickly all my life with one illness after another. In 1990, my
allergist said I had something he called IDS (Immune Deficiency Syndrome) and I
was probably born with it. I now have the stamina to work and despite
enormous stresses in my life, I have the energy to get through the day
now.]
20.
XYREM (GHB) - revisited
"Feels just like a hangover from
alcohol--headache, nausea, dizzy, disoriented,
can't get
air." [NOTE FROM DOMINIE: This was from the "sleepless
man" that we all tried to help last year. Please keep Jon in your
prayers. He is going to work with the doctor on tweaking the dose.
It sounded promising because it stops the alpha wave intrusion into sleep and
keeps the slower delta waves going. It's being used in fibromyalgia
research now and so far looks promising.]
Got a call from a newsletter reader wanting
to know if I have tried Xyrem yet. I have not asked the doctor about it,
but plan to. Had some trouble getting the sleep meds I needed this
month.....I guess the doctors are afraid people are going to abuse these
things. Might send him some info. about Xyrem to ponder before I actually
ask for a trial prescription. This caller and I said how GREAT it would be
if there was a SURE CURE for insomnia that's related to fibromyalgia!
Sleep is what helps our immune systems function better. Can't imagine how
the non-fibro world would be able to manage their lives on as little sleep as
most fibro patients get! I spent at least 20 years of my life in a
miserable fog of suffering caused by sleep deprivation--and then by the drugs
that were supposed to help this problem! Finally, 2 years ago, I started
drinking an immune balancing shake. At that time, I had been sleeping
just a few hours per night for about 18 months and was having 25 hot flashes
every day, hair falling out, fibro fog, digestive problems, etc. I
am glad I heard about this because I am feeling lots better.
Rebalancing the immune system helps in a lot of different ways.
21. SINUSITIS
LINKED TO CHRONIC FATIGUE
From immunesupport.com's
newsletter--
A new study published in the August 11 issue
of the Archives of Internal Medicine demonstrates a possible link between
unexplained chronic fatigue and sinusitis, two conditions previously not
associated with each other. Also newly noted was a relationship between
sinusitis and unexplained body pain. With further investigation, these findings
might offer new hope to patients lacking a diagnosis and treatment for fatigue
and pain. http://go1.warp9ems.com/go.pl?tu=33990474-15634
22. BIRTH
CONROL PILLS AND FIBRO
A newsletter reader (doctor) has made this
interesting comment--
"Pregnant women report a decrease in pain, I
think if you take birth control pills, it can mimic the same for the body,
thus reducing the symptoms." [NOTE
FROM DOMINIE: See my Tip #91 at http://www.fms-help.com/tips9.htm#91 about the hormone relaxin and its relationship to
pregnancy and fibro. Interestingly, I developed fibro the year I went off
the pill, at age 30.]
23.
ACUPUNCTURE AND FIBRO
From a newsletter reader--
"i have been going to an acupuncturist.
he has helped me so much with the pain and low energy. i thought i could go back
to work at my day care. well 1 week into it i came down with bronchitis and
sinus infection and threw every thing out of whack. so i see i can't do that
even though i am much better going to the acupuncturist. i was scared at first
to try it but it really helped me." [NOTE FROM DOMINIE: I can sure empathize with this
reader! I have been chronically ill nearly all of my life. I am 51
now, so that's a lot of years of crummy health! I had no resistance to viruses,
bacteria, etc. I remember how I would always get sore throats after
touching money (it's very dirty!!)--like at fast food places--if I didn't
wash my hands before eating. I also had to quit my job as a school teacher
due to poor health (kids are verrrry germy!) My CFIDS story is at
www.fms-help.com/fatigue.htm Thankfully, I have been doing lots
better since June of 2001 when I started drinking an immune balancing
shake. I now teach piano lessons to children every day and don't get sick
anymore.]
24. CFS AND
DISORDERED IMMUNE FUNCTION
From immunesupport.com's Tip of the
Day--
An important component of Chronic Fatigue
Syndrome is disordered immune function. Your body may
chronically think it is fighting an infection that is already gone, and this
contributes to the symptoms. Since the immune system is not working
well, people tend to get repeated infections such as sinusitis and
other respiratory infections, bladder infections, bowel infections, and yeast
overgrowth. These must all be treated while at the same time avoiding excessive
antibiotic use [check with your physician about treatments that are right for
your particular symptoms]. (Source: Jacob Teitelbaum, M.D., from his bookm, From
Fatigued to Fantastic: A Manual for Moving Beyond Chronic Fatigue and
Fibromyalgia) [NOTE FROM
DOMINIE: This tip rang a bell with me, since I've had a lifetime of
infections and chronic illness. I
am now a walking-talking example of how balancing your immune function can help
you feel better.]
25. MARY
MOELLER'S FIBRO STORE
Mary Moeller, wrote the following for
inclusion in this month's newsletter--
"Thanks for the work you are doing. We all
have a big job to do in helping people with this health problem. I am
in the process of (almost finished) improving my web site. It will
contain around 200 products (unusual or difficult to get a hold of) helpful for
sufferers of fm/cfs such as a comfortable clothing line, chemical free
furniture, heat/cold therapies, CD's/audiotapes to help with relaxation, sleep
etc, Yoga and exercise video's/DVD's, healthy foods, essential oils and a
multitude of other products helpful with symptoms and in the healing process. It
focuses on "natural" helps for numerous health issues including arthritis,
fibromyalgia/chronic fatigue syndrome, ADD/ADHD, chronic sinus problems,
childrens health, chronic sleep problems and viruses. I have/am in the process
of, writing up many of the things I have done during my healing process and in
the 11 years since being symptom free. One of the great things about
this website is people can log on, sign up for an ID # (free) and refer the web
site to others asking them to use their ID # and make a commission off of
anything that is purchased with their ID#. I am hoping this site will not
only help people with their symptoms, but also help them bring in a little extra
income. It is not completely finished, but it is useable now. We
should have most of the products and most of the information on it by Sept
15. Could you please put this info on your newsletter? If you would
like to check out the site the address is www.naturehealthsolutions.com."
26. READER HAS
PRODUCTS TO SELL
Cyndy at cyndy@whyknotwellnessspa.com has
some coral calcium and also enzymes to sell. Her supply is larger than
needed. If interested, please write Cyndy for details as to the products
she has available and cost.
27. READER WANTS
INPUT ABOUT NEURONTIN AND PAXIL
"I would like to ask some of our Fibro family
if they have tried Neurontin or Paxil? I was just prescribed these
medications because I cannot take most of the other anti-depressants because of
the side effects and because of other medical problems. I would
appreciate any input they could give me. I haven't filled my prescriptions
yet because I hate knowing that it will bother my other problems. I have
asthma and problems with my neck muscles called (torticollis) which causes
tremors. I would appreciate any information." Bobbie adotson@netscope.net
28. SPIRITUAL
UPLIFT CORNER
I had a wonderful experience recently singing
a duet with an 81 year old gentleman. Bro. Curtis still has a
beautiful strong voice....kind of like George Beverly Shea's (on the Billy
Graham team). We sang "Blessed Redeemer" and "He Looked Beyond My Fault
and Saw My Need." It was great to sing with a "seasoned" saint about
our wonderful Savior, the Lord Jesus Christ! My husband, Donnie, and
I are members of Russell Baptist Church in Green Cove Springs, Florida.
I serve the Lord there as church pianist.
For many years, due to severe fibromyalgia
pain and chronic illness, I was not able to play any of my instruments--piano,
guitar, autoharp or organ--as it would cause severe lingering pain for
many weeks. This was one of my FMS "losses" that
lasted for more than a decade! Now that I am feeling great again,
it's wonderful to be able to play my instruments again. I have no pain anymore
in my arms, hands or shoulders.
I wish that every one of my newsletter
readers would be able to experience the wonderful love and support that
comes from being a part of the Body of Christ in a local church, such as Donnie
and I enjoy. Yet I know how hard it is to get
out to church and other enjoyable activities when you are feeling
terrible. Well, you can always turn on the TV to hear great preaching
and music! It will uplift and edify your "inner man." God doesn't want "Lone Ranger" or "Secret Service" Christians!
In this dangerous time we live in, before the return of Christ, we need all the
support and encouragement we can get to keep the devil and sin out of our lives
and to stay on the track together for the Lord.
"Not forsaking the assembling of
ourselves together as the manner of some is, but exhorting one another; and so
much the more as ye see the day approaching." Hebrews
10:25
29. DOMINIE'S
PERSONAL UPDATE
My 20+ years of struggling with
severe FMS/CFIDS has made me very tenderhearted and
compassionate toward those who are still suffering with this. The
memories of my painful years are not that far in the past.......
I continue to do great on the immune shake and
capsules. I feel better now at 51 than I have felt in my
entire life. Some of the benefits I've personally
experienced (beginning the 3rd-4th week) have been:
* more energy and
stamina
* improved
sleep
* 98% of pain went
away
* no more racing
thoughts
* no more gas and
bloating
* hot flashes greatly
decreased
* complexion is
nicer
* had only 1
virus/cold in past 2 years.
Prior to taking finding the shake, I had been
sick frequently for long periods of time ever since childhood. An
allergist I consulted around 1990 told me that I had something he called
IDS (immune deficiency syndrome) and he said it was
similar to AIDS, but I didn't acquire it--I had been born with it. I
remember taking gamma globulin shots as a child due to my
frequent illnesses.
MY FIBROMYALGIA
STORY
MY CHRONIC FATIGUE
STORY
100 TIPS FOR COPING
WITH FIBROMYALGIA AND INSOMNIA
I also use mineral
sachets in my drinking water to keep my pH more alkaline which
helps my overactive bladder problem when I become too
acidic. I was getting tired of getting up 10+ times a night to go to the
bathroom! These sachets also provide ionic calcium.
I have been using a natural
antibiotic as needed for the past 7 years whenever infection tries to
start up. It works better for me for yeast infections than Diflucan
(antibiotic), which I used to get from the doctor frequently. You can put
small amount of this natural antibiotic in a douche bottle with water. I
also use it to spray my teeth at night to reduce bacteria in my mouth which
causes cavities. I have used it to ward off sinus infections, ear
infections, etc. There are MANY ways to use this. If you're
interested, I can send them to you. Write me at dom@fms-help.com
I have used the essential
oils of Lavender and Peace and Calming for sleep and relaxation.
I sometimes add Lemon and Joy as well. I put these (non-oily
feeling) drops on my palms and rub some on my temples and under my
nose. I am amazed at how relaxed I become! Aromatherapy works on the limbic system of the
brain, which is tied to the olfactory system (sense of smell). Our
hypothalamus and other glands in the brain are part of the limbic
system. My THEORY is that the hypothalamus has been
affected by mycoplasmas (mutated viruses and bacteria) which take over when the
immune system is not functioning right. Then the immune system goes into
overdrive searching for the "invaders" but can't find them since mycoplasmas
hide behind normal cells. The body begins attacking itself, which is the
definition of AUTOIMMUNE DISEASE. If you are interested in essential oils,
write me at dom@fms-help.com, and I'll put
you in touch with a friend who knows a lot about them.
Regarding SLEEP MEDS, I
continue to use 1/2 mg. of generic Ativan (.5 mg of lorazepam) and 1 generic
Sominex (diphenhydramine HCL) about 2 hours before bedtime. On occasions
of extreme stress, I also use a tiny bit (1/4 tablet) of Ambien to help with
sleep. I generally don't like to take the regular dose of Ambien because
of rebound insomnia when you try to stop taking it, and I don't like the memory
loss--but in an emergency it works. If you would like to read my
experiences with about a dozen sleep meds, see my sleep page at www.fms-help.com/sleep.htm
I use HEAROS EAR PLUGS from
WalMart, which are the most comfortable and effective ear plugs I've found. I
also wear a BLACK SLEEP MASK if I am still sleeping after the
sun comes up. My husband doesn't like dark shades on the windows, so using a
sleep mask is the best answer for me, despite his comments about the Lone
Ranger....ha!
I sleep on a MAGNETIC MATTRESS
PAD that I like very much. I also have a magnetic pillow.
Be careful in shopping for these kinds of items. They are expensive. Be
sure you get a good and reputable brand.
I find it calming to put a cold pack on
my forehead or behind my neck when retiring for the night. I have a sort
of "cloth-covered" cold pack that I keep in the freezer for
this purpose.
I find it helpful to get some mild
exercise every day (either walking or very light weights -
3 lbs.) I experience some soreness if I eat too many simple carbohydrates
(sugar, white flour, etc.) Humidity and
weather changes affect my FMS more than heat or cold. It's important
to get some sunshine or daylight every day. Don't stay indoors in the dark! If
you need other ideas, please read my 100 Tips for Coping with
Fibromyalgia and Insomnia at http://www.fms-help.com/tips.htm
Thank you for reading my
newsletter!
Dominie
Bush
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