DOM'S
NEWSLETTER
Feb. 4,
2008
A compassionate,
informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue
& Immune Dysfunction Syndrome (CFIDS) and Myalgic
Encephalomyelitis.
Scroll down to
read 20 short TOPICS.
1. READERS
WRITE
"I have found your web page www.fms-help.com to have the most
information I have ever come across."
"Thank you for continuing to bring
fibro sufferers together. Your efforts have and will continue to
help so many people."
"Just wanted to let you know how much I have
enjoyed reading everything on your site."
"Thank you for your website, your time, and
commitment to helping others."
"Thank you for putting your extensive
website together."
2. IS IT
FIBROMYALGIA OR CHRONIC FATIGUE SYNDROME?
Link from a
reader--
3. GLUTEN
FREE
From a lady who
originally was diagnosed with FMS/CFIDS and IBS--
"Have you tried going gluten-free? My
CFS and Fibro and IBS disappeared once I went off of gluten and dairy, even in
trace amounts, and I now function normally. Turns out, I have
celiac disease, which is another auto-immune disease that is
vastly underdiagnosed in the US and can cause all of the other auto-immune
diseases."
This is really
interesting, because I had a friend years ago who was first diagnosed with
fibro. But then because her joints were red and swollen, the doc
changed the diagnosis to RA (rheumatoid arthritis). About this
time the internet became available, and her husband did some research.
Turned out she had celiac sprue (gluten intolerance). She went on a gluten
free diet and felt lots better, but became extremely thin.
4.
LYRICA
"I have been taking Lyrica for a year because
the neroutin would not work any longer. I have never had a problem with Lyrica,
matter of fact it helps the pain in my back and hips. Granted I still have some
pain but its not as bad. I believe in this drug very much. I think my doctor
choose well to treat my symptoms, after all there is no cure yet."
5.
SPLENDA
A reader wrote to ask
me about the safety of generic Splenda, an artificial sweetener. I have a
page about the dangers of Splenda on my site at http://www.fms-help.com/splenda.htm.
Unfortunately, I don't know enough to give a truly intelligent answer, but this
is what I wrote back--
"I would think that
generic Splenda would have the same benefits/risks as the brand name. We
all like a sweet taste - pretty much I have gone back to sugar (verrrry
moderately) because I absolutely will NOT use aspartame (Nutrasweet). I
have used Splenda a couple of times. My husband uses plain old saccharin
(Sweet n Lo) in his coffee and he is in excellent health. They say now
that the studies on saccharin (about causing cancer in lab rats) was not really
fair because the rats were given boatloads of saccharin and not comparable to
what a person would use. Anyway, I don't know the total answer.
The other day I put saccharin in something, and it was OK, but I'm not a doctor,
scientist or medical expert......ha. Interestingly, I think a lot has to
do with our genetic make-up. My parents (father died at almost 92 - sharp
as a tack until a stroke felled him, mother now 86 runs circles around me) did
all kinds of things that supposedly are not good for health, such as cooking
with pitted aluminum pots, drinking heavy chlorinated tap water, taking risks
with travel in a foreign country with poor sanitation (got deathly ill but
recovered), sometimes consumed Nutrasweet (aspartame), etc. They lived
their life with joy and faith. Well, then there's me.......watching my
health all the time because of FMS/CFIDS. I can only get about 50 miles
down the road (to see my mother) and that's all I can manage. So we are
all different!!!!!!"
6. MILK
THISTLE FOR SWEATING
Sometimes the
sweating that we fibromites have is from hormones or a rev-ved up nervous
system. It can also be a side effect of many drugs, such as Effexor.
However, a reader just wrote me that milk thistle has
helped her sweating problem! Now that's interesting! Milk thistle
cleanses the liver. When we have such excessive sweating, it could be that
the body is trying to rid itself of accumulated toxins. Also, eliminating
sugar from the diet can help too.
7. COLD
SWEAT - CAN'T GET WARM
From a
reader--
"I was reading the information/comments about
sweating. I get night sweats at times, but what really bothers me is that
sometimes I break out in a cold sweat. Sometimes it happens at work, other times
it happens while I'm doing something more physical. It's the weirdest thing. The
other day I was taking karate class and was sweating in class because of the
workout...no big deal. All of a sudden, near the end of class, I broke
out in a cold sweat. It was awful. After that I couldn't get
warm and felt weird. Usually I feel pretty good at the end of
class...my muscles are warm, no pain, the workout makes me feel good, but not
this time. I was shaking when I walked off the mat and had to put on my coat to
try to get warm. Even then I was still shaking because I just felt so
cold. I came home a few hours later and took a bath to
feel better and completely warm up again."
8. VEGAN
CAN'T LOSE WEIGHT
"One of my biggest problems currently is
weight gain (I am on a vegan diet because protein simply hurts
my stomach since the gallblallder removal) around 1200 calories a day, and I
have gained 20 pound in the last year. I eat extremely healthy and I
exercise religously and I still can't lose weight."
9.
TARGETED GENE THERAPY FOR RELIEF OF PAIN
From a
reader--
Targeted
Gene Therapy Provides
Relief For Chronic Pain
Science Daily Jan. 22,
2008
*************************
Mount Sinai School of
Medicine
researchers successfully treated
chronic pain with targeted
gene
therapy that simulates the
pain-killing effect of opiate
drugs.
They designed a viral vector to
carry the gene into primary
sensory
neurons to selectively activate
opiate receptors. The treated
rats
remained symptom-free for an
extended period of......
http://www.kurzweilai.net/email/newsRedirect.html?newsID=7863&m=26263
10. BORROWING MONEY TO PAY FOR MEDICAL
TREATMENT
From a
reader--
"Note
to people who borrow money on credit for their illness: It was brought to
my attention that some doctors have patients obtain a loan on credit for their
health care. If you feel your doctor is not helping you with your
illness you can stop payment and any unused funding will be reimbursed into your
account. Here is what a friend told me: 'When my husband
first applied for care credit www.carecredit.com at the dentist's
office, the office manager told care credit the amount that was needed for the
treatment plan. Automatically he was approved for that amount and it was given
directly to the dentist office. We ended up not spending the total amount and
had to ask the dentist to give us a check for the remainder or refund it to our
care credit account. I think they refunded it to the account but it am not sure.
All I can remember is that it was resolved
easily.'"
11. DR.
TEITELBAUM
From a
reader--
"I
had the awesome opportunity to meet Dr. Teitelbaum (author of "From Fatigued to
Fantastic" & "Pain Free 1-2-3") and he recommended I try a product
called "Calming Balance", by Health Freedom Nutrition for brain fog and sleep,
he thought was caused by stress and anxiety. He explained that,
in many people, stress and anxiety cause us to not breathe
correctly and this is what can cause panic attacks and brain fog, not getting
the proper ratio of air. It made sense to me because all my major
symptoms of Fibro and CFS started with panic attacks during an extremely
stressful time, 10 yrs. ago. I think the Calming Balance is helping a lot
with the brain fog and if I take the Calming Balance 3 times a day it's helping
with sleep. It takes about 6 weeks for full benefit, so I'm hoping for
even more improvement. I highly recommend anyone with brain fog, anxiety,
stress, or poor sleep to try Calming Balance. And they have another
product called "Happiness 1-2-3" that is helping others with
depression."
This makes
sense. I wonder though about some of the overlapping ingredients, if you
take both of these products at the same time. Personally I have found
great help with some essential oils, a powerful antioxidant that takes
oxygen to my brain, and also an anti-stress formula. I highly
recommend that we fibromties try NATURAL ways of relieving these miserable
symptoms instead of drugs (as much as possible), to avoid side effects and
also toxicity. See www.fms-help.com/what.htm for a list of things that help me
greatly.
12. MOLD -
DANGEROUS!
Here is my
response to a reader who inquired about my page at www.fms-help.com/mold.htm about the devastating effects of being exposed to mold in my
workplace in 2005--
"I was not tested for
mold, but having had previous experience with mold in both a workplace (had to
quit) and 2 residences (had to replace ductwork and have thorough cleaning done
with bleach), I know the awful symptoms of total debilitation that I
experience. I read somewhere that 25% of the population is adversely
affected by mold (it's genetic), which is why not everyone falls ill from
it. Sadly, the place where I worked in 2005 for a year had been water
damaged, which I was not aware of. I tried CSM, as recommended
in MOLD WARRIORS by Dr. Ritchie Shoemaker, but I couldn't keep up with the
dosing (complicated). However, I began using some heavy duty nutritional
supplements, and this helped more than anything. However, for a short
while, I thought CSM was helping, but had a total crash 3 months later.
Wish I could be more help."
13. REVOLUTION
HEALTH
14. CURE FOR
CFIDS?
Any more comments on Ashok Gupta's CFIDS "cure?"
www.guptaprogramme.com - I have not had any response except from one man who was
going to order his program ($199). Write dombush@bellsouth.net if you know more about this or have tried it. Mr. Gupta's
theory is that trauma to the amygdala causes CFIDS. See my Jan. 12
newsletter at www.fms-help.com/011208.htm (Topic 15). I do believe that FMS/CFIDS is a disorder
caused by brain malfunction, perhaps from genetics or a virus. I have had
FMS since 1982 www.fms-help.com/fibro.htm and CFIDS since 1987 www.fms-help.com/fatigue.htm - these conditions have altered my life.
15. RESTAURANT
HEALTH INSPECTIONS
From a
reader--
No more lemons in my
water at restaurants from now on!
16. CHOCOLATE LINKED TO WEAKER
BONES
17. WHAT
CAUSES CHRONIC FATIGUE SYNDROME?
This link from a
reader--
18.
MAGNETIC BRAIN STIMULATION HELPFUL
Article from a
reader--
"Magnetic brain
stimulation has been found to be helpful for Fibromyalgia
pain.
Have
you ever wondered about a Fibromyalgia treatment that
doesn't involve taking
a handful of mediations several times a day? New
research shows that
repetitive transcranial magnetic stimulation (rTMS)
is a safe non-invasive
technique for an overall decrease of pain and
subsequent depression that is
associated with Fibromyalgia. Basically
this means that low frequency
magnetic pulse has been shown to reduce
pain and depression in patients who
suffer from Fibromyalgia. Studies
show that rTMS induced a long-lasting dec
rease in pain and improved
quality of life in patients with FMS, without
affecting mood or anxiety
levels.
Now, I know what you're
thinking...What about the side effects??
The energy emitted is actually less
than your cell phone but the
frequency is different. Therefore, there is no
risk of serious side
effects. These treatment devices are small and easy to
use in the
comfort of your own home just twice daily.
If you are
interested in more information please contact us here at the
Fibromyalgia
Research Lab via email or call 352-265-8901.
Natalia Shelton
Laboratory Technician
Center for Musculoskeletal Pain Research
University of Florida
PO Box 100221, G-056
Gainesville, FL
32610-0221
352-265-8901
19. "TOO
LOUD, TOO BRIGHT, TOO FAST, TOO TIGHT"
What to Do If You Are Sensory
Defensive in an Overstimulating World
By
Sharon Heller, Ph.D.
This book is
soooo interesting! I got it for Christmas and I'm about halfway through
it. This sure describes many of us with FMS! See http://harpercollins.com/books/9780060932923/Too_Loud_Too_Bright_Too_Fast_Too_Tight/index.aspx - "We all know what it feels like to be irritated by loud
music, accosted by lights that are too bright, or overwhelmed by a world that
moves too quickly. But millions of people suffer from Sensory Defensive Disorder
(SD), a common affliction in which people react to harmless stimuli not just as
a distracting hindrance, but a potentially dangerous threat.Sharon Heller, Ph.D.
is not only a trained psychologist, she is sensory defensive herself. Bringing
both personal and professional perspectives, Dr. Heller is the ideal person to
tell the world about this problem that will only increase as technology and
processed environments take over our lives. In addition to heightening public
awareness of this prevalent issue, Dr. Heller provides tools and therapies for
alleviating and, in some cases, even eliminating defensiveness
altogether."
For those of us
on extremely tight budgets, you may be able to find this book in your local
public library - if not, check out a bookstore like Barnes and Noble or other
bookseller that let's you sit down and read books in the store. I would
love to hear comments from people who have read this
book! You can write me at dombush@bellsouth.net.
20.
DOM'S UPDATE
I continue
to do well (for me) these days. Still teaching piano at the school of
music www.fms-help.com/students.htm. The only thing I can't do is plan ahead - can't play for
weddings or special events anymore, because it's too risky with undependable
health - obviously I can't disappoint folks by cancelling at the last
minute!! I am still a church pianist playing for services, choir
practice and band rehearsals. I still can play for funerals because
they generally need me in the next day or two and I can commit to something
short term.
A regimen of
helfpul meds and supplements (see my list at www.fms-help.com/what.htm) continues to work well for me as long as I keep
my stress levels down. This has meant saying NO
to a lot of people and things I wanted to do - but I have found it absolutely
necessary in order to stay functional for things I truly need to do to
survive....like work!
Fortunately, I am
blessed with an understanding husband www.fms-help.com who does most of the housework (!!!) 
and supports my involvement with the FMS
community online.
I don't understand
folks who say they have FMS/CFIDS but are jetting 
to conferences all over the country! On a good day I
can drive 50 miles 
to see my 86 year old
mother. Most of the time, she comes to see me (and can run circles around
me!) Those of us with FMS/CFIDS/ME are more disabled than
many other people with well known problems - for example, I have a friend who
has a teenager who was born with a heart defect and many other serious
physical ailments, yet they keep up a hectic family schedule - concerts,
trips, performances, camps, etc. Goodness!!! I can't do 1% of
what they do!
Of course, my
FMS/CFIDS problem has been made much worse by a year-long exposure to
toxic mold in my workplace in 2005 - see www.fms-help.com/mold.htm. I caught a terrible respiratory
virus 
while working there and have never
completely recovered, although I am greatly improved since last year.
However, I have been left with a respiratory weakness that
immediately flares up when I am under stress or fatigued. So the lesson is
"STAY AWAY FROM MOLD!" I have read that only 25% of
the population is genetically negatively affected by mold, but I am definitely
in that minority, and maybe some of my readers are too!
Well, I've come to
accept my limitations - with faith that there is a reason for
them. One benefit of this limited lifestyle is that I don't
squander energy on things that are a waste of my time, and this
forces me to focus on things that are worthy of my attention. I am
thankful to be alive and functioning reasonably well these days. (My FMS
began in June 1982 - see www.fms-help.com/fibro.htm and my CFIDS began in
1987 - see www.fms-help.com/fatigue.htm.)
All you have to do is
watch the news on TV or read the paper to know that we are still blessed
compared to many people. There is tragedy everywhere these days! (My
only wish is that I had robust health in order to enjoy the blessings in my
life!) Seriously, I thank God for all He has given me. ("Though He
slay me, yet will I trust Him," said Job.)
One more
incredible thing I want to share with my readers!....
Last week a dear
singing friend with whom I made a CD (Curtis, age 86) was put in the
hospital 
facing amputation on Monday of one or both
legs due to poor circulation. Gangrene had set in!!! How awful!!!!!
The doctors cancelled his surgery on Sunday because circulation was coming back
into his feet! There were so many tears of joy and relief from family and
friends, because Curtis is a much-loved person who has lived his life for God
and others.
What was most remarkable to me was that Curtis
was full of faith and peace when facing this dreadful surgery
(especially at his age!) and remained full of faith and peace when the good news
came. He said the Lord is doing it all and he is just resting in Him.
(Curtis can be a "fiery" passionate soul, so this calmness about him is nothing
but GOD!) He will be in a nursing home for an indefinite period of time,
but his toes look pink again. He had LOT of prayer going up from
many sources!
I will go to my grave remembering that during
this awful time in his life, this dear man continued to affirm God's
sovereignty, saying repeatedly that God was still on the throne!
To praise and trust God during a time like this is the greatest miracle
in my opinion. My mother asked me if I would sing Curtis a
song when I went to see him at the hospital, so I did, but I was bawling
like a baby 
because I was sooo relieved for him and because my friend did not
lose "faith's sweet consolation" (verse 3 below) in his
darkest hour. I will never forget his example!
Below are the words of the song my mother asked me to sing (it's
an old hymn that has stood the test of time and
experience)--
"Day By
Day"
Verse 1
Day by day and with each passing moment,
Strength I find to
meet my trials here;
Trusting in my Father's wise
bestowment,
I've no cause for worry or for fear.
He whose heart is kind
beyond all measure,
Give unto each day what He deems best;
Lovingly, its
part of pain and pleasure,
Mingling toil with peace and rest.
Verse 2
Every day the Lord Himself is near me
With a special
mercy for each hour;
All my cares He fain would bear and cheer me,
He whose name is Counselor and Power.
The protection of His child and
treasure,
Is a charge that on Himself He laid;
"As your days, your
strength shall be in measure,"
This the pledge to me He made.
Verse 3
Help me then in every tribulation,
So to
trust Your promises, O Lord;
That I lose not faith's sweet consolation,
Offered me within Your holy Word.
Help me, Lord, when toil
and trouble meeting,
E'er to take, as from a Father's hand,
One by one,
the days, the moments fleeting,
Till I reach the promised
land.
Til next
time,
Dominie
(fibromite since
June 1982)
Return
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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.
