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2.
LOOKING GOOD ON THE OUTSIDE
"From the outside, no one can see my
pain, except for the way I walk. They say I "look
good", am "pretty", and because I don't wear a cast like
you would with a broken leg, they can't see the
pain suffered day and night, and lack of sleep from
the pain. Not enough awareness is out there for them to
also understand that from one person that suffers from FMS/CFS to another,
that yes, some can still work, and some are so disabled like I am that it
is hard to function, we are not all equal. I envy those that do get
results from treatment, I am turning 50 this year, and feel so young still
on the inside but my body doesn't let me live the life I want to
live. I keep quiet mostly to others, but my close family and friends, know
what I go through - I don't want them to treat me different, yet they
don't understand why I don't do so much. Thank you for
being the voice for us all. It means a lot."
[See Terri Been's
classic article, "My Name is Fibromyalgia" at www.fms-help.com/mnif.htm - it's short, simple and easy for people
to understand our experience in non-medical
terms.]
3.
GLYCONUTRIENTS, INSOMNIA & ALCOHOL
Got this from a
website reader who does NOT have fibromyalgia, but may be on to something
important for us--
"I was searching with google for info
on antioxidants and insomnia. Your site
produced a hit.. Then I read parts of your site relating to the
unusual nature of FMS. Well, this info may be of use to you since
FMS is sort of a "diffuse", multi-symptom disease. My thought is
that maybe it's caused by a particular nutritional
deficiency.
My story is kind of
strange: I attempted to resist alcohol consumption for over 30
years, usually losing. I could go for 10 days but always
relapsed. There was a forebrain (it was at that location, I
could feel the discomfort and tension there) imperative, a tension
that was relieved by alcohol and little else.
For quite another reason
I began taking glyconutrients. 100 mg twice per day
of the Eight Essential Sugars. My particular source
is www.swansonvitamins.com.
Within 6 weeks
my alcohol craving had vanished.
Effortlessly. All those years, all that effort, will power,
discomfort, expense caused by a LACK OF SUGAR?! There's not
the slightest doubt in my mind that drug addiction is largely
caused by an imbalance in the polysaccharide system of the body. The
EESs fix that imbalance.
I still occasionally have
insomnia, but since I take lots of antioxidants I wondered if
there was a connection between high antioxidant consumption and
insomnia. I think there is. I do know for a fact that
high consumption of alpha lipoic acid causes insomnia, but do other
antioxidants, too? Anyway,
perhaps the EESs would have a positive effect on FMS, too."
And then I got
this follow up email--
"After the alcohol
cravings disappeared, say 4-6 weeks,
I started sleeping better - much better - in fact I had visited the University of Wisconsin (Madison) Sleep Lab a few years ago because my insomnia was so bad. But the lab didn't help at all. The glycos have done several things that I know of: 1) Produced an indifference to alcohol. Many alcoholics battle alcohol with the fervor of the 12 steps. Me? I just don't care about it any longer - I'm essentially indifferent to it, In fact, there's a bottle of vodka in the cupboard - I look at it - and I really don't care. Some of my friends like it. 2) My insomnia largely went away in ~ 6 weeks also. I'm looking at antioxidant-caused insomnia now because I never leave well enough alone.... After the glycos eliminated the alcohol craving, I decided to take more AOs to improve things even further - red wine extract, blueberry extract, grapeseed extract, green tea extract, pine bark extract, & others. But since I'm only getting 3-4 hrs of sleep lately, they might be the culprits. But I'll figure it out. 3) Thought I was getting crohn's disease last year - my best friend actually has it but its in remission. My digestion wasn't good at all. Now its just fine. The EESs also fixed that - but it took ~ 12 weeks. 4) The texture of my hair has changed. 5) I'm calmer and more deliberate. I don't watch TV much anymore. In some way I've been born again & I'm finding out things about myself, because of that calmness, that are surprising. Did you know that Gunter Blobel, the discoverer of glyconutrients, received the Nobel Prize in Medicine for that discovery in 1999? How many other nutritional discoveries resulted in a Nobel Prize? There's lots more to glycos than we even know about yet. Paradigm shift and all that. BTW, glycos have NONE, NADA, NO drug interactions at all. In a way, they're beyond "drugs" They operate at an entirely different level." [If you have comments about his sleep question "Do antioxidants cause insomnia?" or if you have tried glyconutrients for FMS pain or insomnia, please write me at dombush@bellsouth.net.] 4.
VERY THOROUGH ARTICLE ON FIBROMYALGIA
From a
reader--
5.
CAN'T FINISH COLLEGE DUE TO CFS
From a
reader--
"Can CFS sufferers
successfully finish college and lead productive lives? I read on
your site that CFS suffers have a problem with staying animated right up
to bedtime. I used to study for exams at night and get racing
thoughts the moment I tried to sleep. This is one of the reasons I decided
to withdraw from college. I wish I hadn't. I really want to
complete my studies, but sometimes my health and my brain fog just won't
let me. Any advice?"
[This is a
common problem for FMS/CFIDS sufferers. If anyone wants to respond,
I'll put some of the thoughts in my next newsletter. I hear
from younger readers (or their parents) about FMS/CFIDS interfering
with normal living--such as going to school, social activities,
etc. See my page at www.fms-help.com/teens.htm.]
6.
TIRED, WIRED & SICK
From a
reader--
"My
Levaquin alone cost me $108. for 10 pills that I can barely
tolerate. I called the doc today because my ears feel full, my nose
keeps running, my throat is irritated and I keep coughing. He told
me I'm "draining." He said it like it's the most natural process in
the world. I thought I had a cold on top of my
infection, but he was like, "oh, no ... you're fine, just
draining ... could take 3 weeks, stay on the medications I
prescribed." Oooh, Dom ... it's like there's no hope in sight
sometimes. I cannot wait until the magazine arrives so I can show my
friends the reason why I never feel up to shopping
anymore. LoL. I also noticed I've been more
moody/emotional/sensitive since starting the new round of
medications. I can't seem to think straight and I'm
making poor decisions. I just jump to
conclusions too soon, I can't relax and sleep on
things. I get annoyed/stressed and "freak
out." Is there anything that can help me relax and improve my
thinking?"
[Send comments to
dombush@bellsouth.net for next newsletter.]
7. READER
TRIES CHOLESTYRAMINE (CSM)
From a reader with
MCS--
"My Multiple
Chemical Sensitivity was exacerbated after my condo
mold exposure for 2 years, even though
I had a slight problem before that. I started taking CSM after reading your site www.fms-help.com/mold.htm and "Mold Warriors" www.moldwarriors.com, but had to switch to the
pure CSM that doesn't have any dye or additives
(as recommended by Dr.
Shoemaker www.chronicneurotoxins.com in
his book).
Have only been on CSM for 2 weeks now and am hoping it will help me as it's helped you. Please mention the "pure CSM" as an alternative for people who have food allergies and MCS. Not everyone has the time
to read Dr. Shoe's entire book as I did and to put someone with FMS
and Multiple Chemical Sensitivities on CSM that is orange-flavored and loaded with dyes and additives, might not help them, just hurt them." 8.
TREATING CHRONIC CONDITIONS WITH DIET
From a
reader--
"This author has
been where I/we find ourselves currently - with family members who
have food sensitivities..... his stuff makes good and
fairly easy reading." http://www.eklhad.net/foods/index.html
9. SPINAL CORD COMPRESSION & FMS I wrote about spinal cord compressions and FMS in my Sept. 2005 newsletter at www.fms-help.com/September2005.htm (Topic 30). If anyone has tried spinal cord decompression, newsletter reader Gulnaar gulnaar@rogers.com would like feeback about this approach. Did it help or not?
10. INTRAVENOUS MICRONUTRIENT THERAPY From a
reader--
"I had been in a
car crash 7 years ago and have since been diagnosed with
FM. I have been on every kind of medicine possible for it, tried all
kinds of alternative treatments and in this last year had been on 1.5 mg
Mirapex. This gave me the most relief, however, I
have now developed side effects with it whereby it is
causing a lot of swelling in my body. I had to completely stop it
and start back with 0.08 mg. I feel I am back in my FM hole with
pain and extreme fatigue. I am now looking into alternative
treatments that could be helpful. Have you or any of your readers
tried Intravenous Micronutrient Therapy? Has this helped
anyone? I would love to get some feedback on it."
Gulnaar gulnaar@rogers.com.
[To get info on any topics mentioned on my website or in any past newsletters, please use the Google Search box at the bottom of this page, or on my homepage www.fms-help.com. It will help you find what you're looking for.] 11. ARE FIBROMYALGIA PATIENTS CRAZY?Below are comments by Dr. Rodger Murphree www.fms-help.com/murphree.htm--"Have you’ve been told that you’re
crazy, lazy, or depressed? If so, you are not alone. Friends,
family, and doctors may try to make you think your illness isn’t real.
They’ll probably say, “its all in your head.” Ok, so you forget
appointments, cancel at the first sign of bad weather, get lost on the
way, show up on the wrong day or at the wrong time. You ask the same
questions over and over and often lose your train of thought in
mid-sentence, you have strange reactions to medications and suffer with an
assortment of health problems; yet all of your lab results look normal.
You’ve got numerous complaints including anxiety, depression, fatigue,
chronic pain, insomnia, IBS, MVP, chronic sinusitis, tingling in your
extremities, night sweats, chemical sensitivities, headaches, reflux, and
other symptoms. Are you crazy? You may think you’re a brick short of a
load, but in your defense, I’d feel crazy too if I went days
without sleeping, had diffuse chronic pain, had no energy, had no
life, no hope, and had been bounced from one doctor to another and given
dozens of tests, had taken numerous drugs which didn’t help, and then
proceeded to get worse year after year."
[Read more
about Dr. Murphree's nutritional approach at www.DrRodger.com.]
12. "THE
SECRET" DOESN'T WORK
Jo Davidson,
newsletter reader and talk show host, has written an interesting blog
about the book (and movie) called "The Secret," which talks about why
people get sick and how our thoughts can keep us well. Jo
asked me to share her comments with newsletter readers. See
http://www.myspacecom/jodavidson or http://zentertainment.zaadz.com/blog/2007/3/the_secret.
The bottom line is that this approach doesn't
work. Here's a short snippet from
Jo--
"As long as human
beings have lived, we have been trying to explain
suffering. We strive to give meaning to it, interpret it, get rid
of it by all means, and then when it doesn’t seem to go away, we cast
blame. Who do we blame? Ourselves. Others. Circumstances beyond our
control. Some say that everything is in our control. In a nutshell, this
is the message of the movie THE SECRET. This is the basis of what it calls
spirituality....I began to wrap myself up in a tidy if somewhat judgmental
blanket of 'I create everything that is in my reality.' I was determined
to take the driver’s seat, and I finally had the illusion of being in
control of some situations in my life that had left me feeling out of
control for quite some time. There was however, a blaring red flag. Not
only did Esther claim to be channeling 'Abraham,' but as I absorbed this
book’s message, I sensed myself disowning the 'darker' aspects of myself
and my contradictions, or feelings that might embarrass me. I also
couldn’t help but note that I began to judge others who were
suffering. I began to feel pride, feeling that
somehow I was becoming more enlightened than others. I
was going to come through and conquer all, through the power of my
thinking! Soon after reading the book, an experience with illness
blew a hole right through my pride. If there is one thing I have learned
it is this; In the world of the so called law of attraction,
illness is thought to be a massive failure. Soon
pride was replaced by compassion not only for myself, but
for others. If there is any gift at all in illness, it is humility.
Illness cures arrogance, spiritual or otherwise.
This is where I feel that The SECRET is actually cruel and pompous
in its 'religion.'"
14.
YUPPIE FLU?
Excellent article from Australia about CFS, sent in by
newsletter reader, Hillie--
15. AMINO ACIDS
FOR MITOCHONDRIA
From a
reader--
"I am trying a new program,
amino acids to restart (for want of a
better word) the mitochondria. I have had results all ready, short period of time. I heard Dr. Perricone on PBS a week or so ago and when he said mitochondria, I was all ears...... I do feel the results but I tire easily. All these years of inactivity! Dear God! The Dr. who diagnosed me said no cure but I have never given up fighting the disease. I am so encouraged." 16. DRAIN LYMPH
SYSTEM
From a
reader--
"Thank
you for your informative newsletter. I am from
Australia. It is very generous of you to continue the
newsletter with your health problems but really appreciate the sharing of
knowledge. In your January newsletter
you mentioned Mark Shaw's unique approach to CFS
Fibro. I read his website and decided to buy his E book and
trial his technique. This has been very successful for me, after
suffering with CFS & Fibro for 20 years worsening over the years until
unable to work for the last 8. It is a very simple
approach which makes a lot of sense and since starting have
lost the poisoned feeling and a lot of the pain in muscles and
body has gone. This change happened very
quickly, almost immediately I felt benefits. My level
of fatigue has also improved. It is a
series of exercises specifically to drain lympahatic system
which because of spinal problems causes autonomic nervous system
malfunction, thus lymph builds up poisoning your system. I just wanted you to know and maybe pass on information for
anyone else to try. I have been on it only 6 weeks to date so am
hopefull of maybe improving even more over
time."
[To read back issues of Dom's
Newsletters, go to www.fms-help.com/newsletters.htm.]
17.
(topic removed)
18. NEED WEIGHT
LOSS SUGGESTIONS
I hear from readers who have gained
a lot of weight since having FMS/CFIDS. Some of the reason is from
inactivity caused by having to be more sedentary. But other causes
could be an acid pH, hormone imbalances from this illness, calcium
deficiency, or side effects of antidepressants and other
medications. If you have found a way to lose
weight, please email me at dombush@bellsouth.net.
19. "YOU TUBE"
VIDEOS ABOUT FMS/CFIDS
These are very interesting - we are
NOT ALONE with FMS/CFIDS - we've got lots of company! To watch
videos made by patients talking about their illness and how it affects
them, see the following (you can click on a number of videos from each
link)--
FIBROMYALGIA: http://youtube.com/results?search_query=fibromyalgia
CHRONIC FATIGUE
SYNDROME: http://youtube.com/results?search_query=chronic+fatigue+syndrome |