DOM'S
NEWSLETTER
December 3,
2007
A compassionate
informative newsletter for people with Fibromyalgia (FMS),
Chronic Fatigue
Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis
(ME).
Don't
miss:
#9 SUNSHINE DECREASES
INFECTIONS - Vitamin D
deficiency
#14 CELL PHONES & WIRELESS
- bad for us?
#15 PSYCHONEUROIMMUNOLOGY - FMS is a brain
illness
#21 "FIBROTISED" - a new
word
#24 DOM'S
UPDATE - no pain, fatigue or fog
- just a miserable cold
1. READERS
WRITE
"I have CFS and found it very
interesting to read everything on your site www.fms-help.com."
"Your newsletter is
fantastic."
"I was surfing to try to find some help
sleeping and ran across your web site www.fms-help.com/insomnia.htm.
THANK GOD I found someone who has been where I have been."
"I can't begin to thank you enough for the
time that you spend putting this letter together."
"I was diagnosed 1 year ago but have suffered
far longer, no one knew why....in the past year it has progressively gotten
worse and is taking away from me living the life I'm used
to."
"Love your
newsletter."
"With most other people who share what we
share, there is no one else who understands what we go
through... at least with you and your newsletter and the other readers,
there is complete understanding and it helps in a big way."
2. IMMUNE
SPECIALIST
From a
reader--
"Please tell people to go to an immune
specialist. There they will do blood tests to determine what you might not
have, and will determine if you have FMS or CFS. These doctors are covered
under your insurance plans. I have a feeling that these new "centers" that
are popping up around the country are rip offs. There is no cure for FMS
or CFS, so why would these centers help you get cured. Think twice, go to
a your primary care doctor and ask for a referral to am immune
specialist!"
3. FINDING A
FIBRO DOCTOR
From a
reader--
4. THINGS THAT
HELPED
From a reader--
"I have only been
receiving your newsletter for a short while. I have only had fibromyalgia
for about 6 months, but I am currently at about 70% recovered. I just
wanted to let you know what has helped me. I have been seeing a
chiropractor whose advice I have followed, plus some of my own! The
chiropractic adjustments have helped, the diet he put me on has helped (see
thedoctorwithin.com) and the
vitamins and supplements I take have all helped. I take 5-HTP for sleep, B-vitamins, especially B-3 or
Niacin and Inositol, Choline, and Omega 3 fish oil. At www.thedoctorwithin.com he recommends
getting some sunshine every day (for vitamin D) and I believe this helps as
well. Anyway, just wanted to
share my “two cents.”
5. ASPARTAME
(NUTRASWEET)
From a
reader--
"Thanks for the aspartame article www.fms-help.com/112707.htm.
I drink Pepsi MAX, on most days about half a liter (+/- 2 cups). When I'm not at
home I drink more. Now I'll stop with it. I'll finish what I have and not buy
any more. Maybe some of my MS and fibro symptoms will remit. Thank
you so much. You may have saved my life."
See my page about
aspartame and other excitotoxins at www.fms-help.com/excitos.htm. Some people's FMS symptoms go away when
they stop ingesting these.
6.
WEATHER, STRESS & FIBRO
From a
reader--
"I remember feeling/suffering with these
pains as far back as age 7. I'm 56 now. I had always thought that everyone
must be feeling the same pain, so I never complained, just suffered, sometimes
severely, in silence. When I was finally diagnosed with MS in Oct
1998 my neuro suspected fibro as well. He brought an expert in to check me.
After three pokes on the fibro trigger points, he verified that I have it.
So now I have a double set of initials after my name: MS + FMS. There are good
days, occasionally, and less good ones. Then there are the bad ones that come in
clusters. That can go on for weeks. And, like we all know, it's all so
connected to weather and stress. Since I took
disability retirement in 2002 from teaching in high school, my stress level has
gone from 3,000% to 1.5%. The relief started with my dx and only
improved once I knew I was
retiring."
7.
DAMPNESS, PAIN & VIRAL ILLNESS
Reader
1--
"Re: latest newsletter www.fms-help.com/112707.htm, topic
#10, "Dampness Causes Pain." The ingredient that is in Tussin
DM that helps those with fibro is Guaifenesin.
It can be purchased OTC without all the additives that the Tussin contains and
works very well. However, it tastes nasty (ugh)! It seems to help
keep the pleurisy at bay which seems to accompany the taking of
narcotics (i.e., chest congestion). Fewer incidences of
upper respiratory problems also. This was one of the
first meds I found when searching for answers to fibromyalgia."
Reader
2--
"I have ALWAYS, ALWAYS fallen ill
with respiratory illness when I get a
chill, damp chill, or even FEEL COLD
for a few minutes - if I am lightly
dressed and there is a cool
wind. All I have to do is start shivering
for a few minutes
and the next day, I will be ill. I have learnt NEVER
to go out without a
sweater or jacket because I have learnt that if I
get a chill, I get sick -
swollen glands, cough, sore throat, fever.
Whereas others don't, in
the same circumstances...
I have however been taking a combination of
vitamins that they sell in
my country (South Africa) called Vita-Thion,
since April this year when
I could not shake off a lingering cough and sinus
infection - and this
has kept me safe from flu and gives me enough energy to
get through the
day. It contains:
Ascorbic Acid 500mg
Glutathion
0.5mg
Vitamin B1 2.0mg
Sodium Adenosin Triphosphate 0.5mg
Calcium
Inositol Hexaphosphate 100mg
(excipients).
If I do not take it I
have zero energy and can only lie on my bed all
day and mourn my lost
life..."
Wow. That
last sentence says it all! This reader responded to a question I sent out
to fellow "fibromites" asking if dampness can cause viral illness, as I am
suffering (again) with a cold, sore throat, sinus drainage and chest congestion
after being exposed to dampness. We also have TONS of mold in Florida -
the yard and ground is full of it - grass, shrubs, trees, etc. But I
can't live in a plastic bubble. I plan to post the many interesting
responses I received at www.fms-help.com/damp.htm. Give me a week or two...
8. OZONE
THERAPY
"Has anybody done ozone therapy? I am doing
it with a holistic doctor to treat a hidden infection in my jaw
bone, that while not the cause of my illness, is
contributing. But the ozone totally knocks me out hard the way
chelations did a few years ago. Has anyone had any positive
responses to ozone therapy?"
9. HOW
SUNSHINE DECREASES INFECTIONS
Interesting article
about how staying out of the sun is not good for your health! Also
about Vitamin D deficiency (mentioned in previous newsletters - search
using the Google box at www.fms-help.com/newsletters.htm.
Makes you wonder about wearing sunglasses and sunscreen!
10.
PANDORA
http://www.pandoranet.info - We are One
Strong Voice for Many© in our neuroendocrineimmune community.
We are lending our voice to create awareness of the plight of
individuals suffering with neuroendocrineimmune disorders. Our mission is to
address and alleviate many of the issues that affect the quality of life of
persons who are diagnosed with chronic fatigue
syndrome (CFS), (also known as chronic fatigue
immune deficiency syndrome (CFIDS) in the U.S., and abroad also known as M.E. or
ME; fibromyalgia syndrome (FMS), Gulf War
illnesses (GWI), multiple chemical sensitivities (MCS) and related illnesses.
11.
FIBROMYALGIA FRIENDS
Wanna talk about
fibromyalgia? Check out this discussion group at Revolution Health (really
neat site, BTW!)
12.
FEELING COLD
"I have
awful flare-ups. I can't handle cold windy days; I'm usually
freezing when my husband is just right. And last week, I
think I got chilled when we walked the dogs; I felt cold when we got home and I
woke up about 2:00 a.m. just freezing, even tho the heated mattress pad was on
and I was almost having a panic attack from feeling cold.
Have you, or any other fibromites, had an experience like that? -
Terri"
I used to have attacks
where I was shivering and wearing 3 layers of clothing and hiding under 5
blankets. I could not believe the thermometer in my bedroom read 72
degrees! It felt like the dead of winter! I have had more of a
problem in recent years with sweating - all the time! Even when it's cool
or cold and everyone else is comfortable. At first I thought it was my
age, but now I think it's part of this illness. Our hypothalamus
(temperature regulating gland in the brain) is broken www.fms-help.com/hypothalamus.
13.
MELATONIN FOR SLEEP
From a
reader--
"I have been using sublingual melatonin for
two years to get to sleep....it works for me, much better than regular
melatonin. In most cases I notice nice strong drowsiness within 20 minute. You
can get this at GNC and health food stores. It is pretty reasonable too. My
sleep study showed 96 alpha-wave intrusions. I also started take tylenol 3
when my pain is bad, before bed only, I take something called Lyrica, which is
being studied for fibromyalgia."
Melatonin helped
me with sleep for 3 years, then suddenly stopped working when I turned 47.
A list of things I've tried for sleep since 1982 is at
www.fms-help.com/sleep.htm.
14.
CELL PHONES & WIRELESS TECHNOLOGY BAD?
From a reader--
"Likely Mountain
Lookout, one of thousands of RF/microwave "hot spots." A newly-erected cellular
communications tower was 30' away. Garcia said, "We could hear high-pitched
buzzing....three state communications antennas mounted on the lookout, only 6'
from where we walked." Motorola company manuals...confirm...high frequency
radiation from...antennas is nasty stuff. Safety regulations mandate warning
signs, EMF awareness training, protective gear, transmitter deactivation for
personnel working...close to antennas. Garcia and co-worker Mary Jasso were
never warned about the hazards. By...end of fire season, Garcia/Jasso were so
ill...forced to retire...lookout...closed to state personnel. Garcia, 52, is
now severely disabled with fibromyalgia, auto-immune thyroiditis and
acute nerve degeneration. Medical tests confirmed broken DNA strands in
her blood and abnormal tissue death in her brain. The site also warns
against any wireless home phone, cell phone, toys, remote devices, wireless
internet!"
15.
PSYCHONEUROIMMUNOLOGY
From a
reader--
"FMS is an illness in the brain. When
it
"thinks" there is a threat, it acts on it like it would act on a real
virus. That is why they changed CFS to CFIDS. The immune system in
dysfunctional. It attacks things that are not a danger to us, but
doesn't fight infection well. It turns on the immune response, and
sometimes it just won't turn off for days or years. This happens most
when one is worn out or overdoing; and in the winter when the heat
we
use in our homes dries out our mucus membranes and they are less
effective at keeping viruses or bacteria to penetrate. (that is their
job)
In my business, and among friends not ready to accept a diagnosis of a
syndrome with no known cure, I have heard people repeatedly say," I feel
like I'm coming down with something" they feel like that for a few days,
or feel mildly ill for several weeks or even months, but never actually
get the flue or a cold, etc. When I was in graduate school (at a medical
center), I was overworked due to the studying, working for the school,
and my internship. Then I found out my father-in another State-was
dying of lung cancer. Following finals, I came down with "strep throat".
This triggered an immune response that lasted for 2+ years. Same
symptoms as the writer, and 20 years later I still have health problems.
As long as I take care of myself well, don't overdo anything, have a
great wellness program, and keep toxic people out of my life, I do fine.
Get out of balance, and I get those symptoms again. It is NOT the
virus
I got 20 years ago. It is a strange combination of factors that lead
to
the study of Psychoneuroimmunology. That was what I
studied in grad
school, and there is an association of people that have
diseases or
syndromes that fall in this category. Try googling it. If you
can't find
it, email me and I'll point you in the right direction. The
bottom line?
Just because 2 things happen in close temporal proximity does
NOT mean
one caused the other. The best way to unlock these mysteries is to
keep a journal of symptoms,
actions, food intake, emotional state or stress,
for several months and
then show it to a doctor in the field. Then you can
find out what is
really going on and possibly prevent it. I have FMS. I feel
awful when I
am cold or damp. Aways have. The answer to "why"?, lies within.
Not from
a lifelong virus."
In researching
psychoneuroimmunology, I found this very interesting article about whether
going outside with wet hair causes colds. Actually, it has more to do with
a stress reaction, just like this reader was expressing. See
http://www.apa.org/monitor/dec01/anewtake.html. Also, see my page with the article from Australia called
"Drained by the Brain" at www.fms-help.com/yuppie.htm.
16. MAGNESIUM EASES
INSOMNIA & MUSCLE PAIN
From a
reader--
"This article was from the People's Pharmacy - "Magnesium
Eases Insomnia and Muscle Pain - I have had a lot of trouble with constipation.
I tried Metamucil, but it made things even worse. I tried Citrucel but I'm
sensitive to citrus fruits, so I became more bloated. Finally a
nutritionist suggested I take
800 mg of magnesium daily. This
balances my calcium intake. After the second day of the magnesium
supplements I became "like a normal person." It has also helped my fibromyalgia.
I have read that people with fibromyalgia usually require a higher intake of
magnesium. I am no doctor, but I know my own body and the magnesium has made a
world of difference. You can read more home remedies on our website:
http://www.peoplespharmacy.org/archives/home_remedies/index.php."
Magnesium has helped me with stiff
muscles. But if you take too much, it draws water into the colon and has a
laxative effect. However, if you suffer from constipation, this is a
welcome "side effect." For a list of things I currently use, see www.fms-help.com/what.htm.
17. FIBROMYALGIA
"CURES"?
From a
reader--
"Some truly amazing stories and advice and some new stuff even
I had not heard of.
I reviewed this page in detail and
all I can say is "hope springs eternal!" I have tried some of these things
with no results (such as ACV), but you never know what might help someone.
This is such a weird illness. We are all different. I do feel
very uncomfortable when someone says they have found a "cure" for
FMS/CFIDS. Doesn't sound like anyone stays cured very long. The site
this page is on at earthclinic.com also has "cures" for all kinds of
ailments. There is no one single "cure" for FMS/CFIDS, although
sufferers have nearly identical symptoms worldwide. Use these at your
own risk. I believe in whatever works to get you out of misery. BTW,
cold showers was something Marjorie Holmes recommended in her book "God &
Vitamins" which I read 20 years ago. I would try this today if I didn't
have a cold / sore throat and don't want to make it worse. I
know a cold shower was always invigorating! (I wonder too about the
chemicals in our city water - when you take a hot shower, you are actually
breathing in those vapors!) A list of things I currently use to try to
stay comfortable and functional is at www.fms-help.com/what.htm.
18. GERMS &
MONEY
From a
reader--
"Did you know paper money is the number one place to get
Syphilis if put into mouth or hands in mouth or nose after handling it?
I always wipe my table with a Lysol wipe I keep in plastic bags in my
purse if I eat at restaurant now days ..never could figure how a table was
clean when they use the same cloth on the tables and seats over and over again.
I used to wait tables in the 60's and we did that also, but had a sink that had
a bleach mixture that blended with the hot water when you turned it on to wash
out the cloth , now I see them with the cloths going from one table to another!
Maybe that’s it! We are too clean! The Dollar Stores have those Lysol wipes in
flat plastic packs to carry along now."
I get a sore throat if I handle
money (like at a fast food restaurant) and then touch my food before washing my
hands or using an antibacterial wipe.
19. MEDS
HELPED
From a
reader--
"The combination of drugs I was recently put on have changed my
life. Cymbalta, Lyrica, Vicodin plus I use Aleve for my bursitis. I
feel so good that I over do it and I have to cool it."
20. DON'T LOSE
TOUCH WHEN YOU CHANGE YOUR EMAIL ADDRESS
Having had to change my email
address a few times due to spam, I decided to register with this service so I
don't lose touch with people who don't have my new address dombush@bellsouth.net. This
service is free. I learned about it on Dr. Mercola's
site.
21. "FIBROTISED" - A
NEW WORD
From a
reader--
"Since I got fibrotised, I too, lost the
ability to sleep, it's so weird! Haven't slept 8 hours in over 10
years! Traz helps me get about 5 hours on a good night and I am
thankful for that!! But, I just feel, if only I could sleep, I could get
better."
22.
BOILS
"Do you know anything about boils? I have never had one in my
life and I am in my 40's fighting one after another. I was put on
antibiotics the first time I had them and they went away for about a month but
then came back. Does it have something to do with the immune
system? I watch what I eat, good hygiene, plenty of water
and vitamins. I take care to keep myself dry around that area. I don't
know what to do and I just got off a antibiotic for a bladder infection. I would
sure appreciate any ideas. I am at a loss for what to do. I did go online
and find a site where people wrote in on natural home remedies they use for
their boils. I tried the potato and that did not help. I did hear of a black
smelling substance that you can get by just asking the pharmacist, its behind
the counter. It worked! It draws out the stuff in the boil. I also read that
eating more onions and garlics are helpful along with 4 glasses of lemon juice a
day. Don't know about those things, but I am sick with a virus and am on an
antibiotic again. I would be interested in knowing what others think. -
Teresa"
23. BIRTH MONTH
RELATED TO ALLERGIES & ASTHMA?
I was born in November. I
had asthma as a child and severe allergies as an adult.
24. DOM'S
UPDATE
Well, with all the suffering I
have endured with FMS/CFIDS since 1982 www.fms-help.com/fatigue.htm, I
forgot how miserable a simple cold can be! A virus is going
around our community and with my students. My husband had the
bug for 2 weeks (and he is NEVER sick!), and then I caught it 5 days
ago. I still have a sore throat, sinus and chest congestion, burning nasal
passages, coughing, swollen gland under my jaw and low grade fever.....the works......UGH! Can't wait
until this is gone! It must be a powerful bug, because nothing ever gets
my husband down! Lots of people we know have had this, so I feel
"normal" for a change! People actually UNDERSTAND these
complaints!
I'm debating going to the walk-in
clinic tomorrow, but know they will prescribe antibiotics, and I always get a
yeast infection from taking those, even if I take probiotics also. My last
yeast infection lasted 3 months - pure torture! - so I am not too eager to
get back on antibiotics. I also don't have insurance coverage for doctors
visits or meds, so I hesitate.
Today I played the piano for
church for both services, but left after the music was over to go home and
rest. Not sure that it did much good, but I was too miserable to sit
there. All of the OTC (and even some prescription) medications that I
used for past for similar illnesses don't seem to faze this bug. I may
have to just wait it out.
Well, enough whining from me
today! I hope everyone is doing okay this holiday season. If you
haven't ordered my Christmas CD and could use some beautiful Christmas music in your home played by a fibromite,
write dombush@bellsouth.net for
details. I can get it right out to you - I think the germs on the
mailing packet will die off before they get to your
house!
And don't forget that there are
lots of GREAT articles in the yellow box on my homepage at www.fms-help.com which address many issues
related to having FMS/CFIDS/ME. If you are looking for a specific subject,
use the Google search box below. Type in your topic. Then hit
Alt-F to find where the word is on that page.
Love and
prayers,
Dominie
To help support Dom’s FMS/CFIDS newsletters--
100 Tips for Coping with Fibromyalgia & Insomnia
My Fibromyalgia Story
My Chronic Fatigue Story
My Insomnia Story
What I Use
Dominie’s FMS/CFIDS newsletters
II Corinthians 1: 4 - "Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.
| Search Dominie’s FMS/CFIDS Site |
 DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE
DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented 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. No guarantees are made regarding any of the information in this website.
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