Dom's
FMS/CFIDS Newsletter
November 1, 2008
A
compassionate, informative newsletter for people with fibromyalgia (FMS),
chronic fatigue & immune dysfunction syndrome (CFIDS) or myalgic
encephalomyelitis (M.E.)
Topics are in PURPLE. Readers comments are in
BLACK. My comments are in TEAL.
Don't miss the
RED topics!
1. READERS WRITE
"Wow! I'm reading your site -
it has a lot of good information."
|
"I have just read
your website. Thanks so much for
helping out people who are suffering from
fibromyalgia!" |
"You have an
amazing site!"
"I appreciate your website and all
that you do for fibromyalgia and chronic fatigue
sufferers. I think the website is great."
"I used to be a bundle
of energy with all kinds of projects going all the time. Now, I
have so much trouble trying to motivate myself to do much of
anything."
"We’re all in the same slow-boat. I
love the way we’re all trying to ease each others
suffering through your Message Board. Thank you from
the bottom of my heart. I don’t know what I’d do without your
site."
2. LOW DOSE NALTREXONE (LDN)
Update from a reader--
"I wanted to give you some input on
the LDN.
As you know after the mold exposure I have had chronic fatigue
symptoms. I do not have the pain like fibro people but I share many of
the symptoms.
I have been on low dose naltrexone (4.5mg) for 4
days. So far its been
tremendous, I almost feel normal. I
seem to be getting back to my old
mindset each day. I sleep
sounder but shorter. I wake up on my own
without that
debilitating fatigue.
The brain fog is erased. Its a WOW
effect.
The bad news for me. My blood pressure raises with
this. Its 175/115
so I have to take Alpha blockers to control.
This
side effect is probably specific to me as I probably have a
pheochromocytoma
(Adrenal secreting tumor) They are very sensitive to
medications and
can spike the blood pressure. Other medications like
wellbutrin
and ritalin do the same thing to me.
If some of fibro is immune system
related I would try LDN.
I won't say its a miracle for a few
months. Too early to tell but so
far its doing the
job."
3. CELL PHONES and
ELECTROPOLLUTION
From a reader--
"I feel very strongly that the
stress that electropollution from cell phones, microwaves, cell towers,
electronics, etc. put on our body and brain is a factor. I don't go
anywhere anymore without my Biopro pendant and cell chip. There's a lot of
research, etc. on my website if you are interested www.mybiopro.com/keepsmiling. I cringe every time I see a young child or pregnant
woman with a cell phone now that I realize the damage that is caused. As a
Quantum Biofeedback Practitioner, I was able to see the damages of
electropollution on my clients and that is how and why I became involved with
Biopro Technologies. You walk into Starbucks and the woman in back
of you is on her cell phone, the man in front of you is on his blackberry and
there are 3 people on laptops taking advantage of WiFi. A similar scenario
happens wherever we go today and our bodies and brains are constantly stressed
by EMFs (electromagnetic field radiation). There was a
congressional hearing going on at the same time as the bailout hearings on the
dangers of cell phones but it was pretty much ignored by the
media."
4. AVOID FLU SHOTS?
5. WHAT IT'S LIKE TO HAVE
FIBROMYALGIA
From a
reader, in response to The Stigma of Fibromyalgia www.fms-help.com/stigma.htm, an article I wrote about
negative
perceptions our
society has about fibromyalgia sufferers and how to create more awareness--
"When people ask me what it’s like, I
quip that it’s like having the flu…all the time. It seems to relate to them
better and they are more sympathetic."
Another good article to share is Terri Been's
classic, "My Name is Fibromyalgia," at www.fms-help.com/mnif.htm.
6. AMERICANS WITH DISABILITIES ACT
Congress recently passed the Americans With
Disabilities Act (ADA) Amendments of 2008, and President Bush has stated that he
will sign it. This is a very exciting development for our community. Congress
overturned two Supreme Court cases that significantly narrowed the scope of the
ADA, noting that bodily functions, such as bowel, bladder, digestion,
immune system, cell growth, brain and circulatory functions, among others, can
be just as disabling as the inability to see, hear, or walk.
Most important for our community: Congress stated:
"An impairment that is episodic or in remission is a disability if it
would substantially limit a major life activity when active." This is the first
explicit recognition of the disabling effects of chronic illness. We have --
finally -- been heard!
We will learn more about the reach
of these broader provisions as they are interpreted by federal agencies and the
courts. But there can be no question that this is a very significant victory for
persons who have chronic illnesses.
7. MONITOR YOUR SLEEP CYCLES
From Dom's message
board--
8. "FREE TO STAY AT HOME"
"Free to
Stay at Home" is a book by Marilee Horton that helped me with the idea
of having to quit work when I was first diagnosed with fibro - at
www.fms-help.com/interview.htm I share my feelings of bewilderment at this
illness and how it devastated my life. I felt like I had lost my
identity and purpose. This book may be available in the used or out
of print books for sale on ebay, amazon.com or bn.com. It really helped me
at the time.
9. MMS
From Dom's message
board--
audio interview:
http://download.podango.com/mediatracker/1/48723/tff_005_jim_humble_mixdown.mp3He's talking about it getting rid of the effects of
vaccinations,
basically expelling heavy metals. He says it cures
peripheral
neuropathy, cancer, aids, diabetes, malaria, possibly alzheimers,
etc
etc. Wow, I'm impressed. It's so CHEAP too. Maybe you actually
have
some kind of virus or fungus or some type of parasite that could
be
causing many of your problems. This apparently kills off
everything
below a 7ph in your body, so I guess it alkalinizes you
somewhat.
They're also talking about autism and possible benefits. They've
had
some good results because autistic children have all kinds of
bacteria
and this kills off ALL bacteria. An 11 year old with autism got a
lot
better within a month. A lot of other things can be healed within
a
week or two, like malaria has been healed within a few days.
Apparently
hundreds or thousands of people in Africa were healed
completely from malaria
very quickly. It's cured really bad melanoma
in a couple of months and
smaller melanomas in a few days."
10. FOR THOSE WHO SUFFER
I
wanted to mention an insightful book for anyone who going through suffering and
terrible times. It's called "Streams in the Desert, Vol. One" written by
"Mrs. Charles Cowman." There are many versions of her great classic that
have been published, but the one I prefer is at
http://www.christianbook.com/Christian/Books/product?item_no=48400&netp_id=127902&event=ESRCN&item_code=WW&view=covers#curr
This book was given to me by an elderly woman when I was
going through horrible fiery trials during a 4 year period. I read it
every day, and it spoke to me! Many times, it was like being encouraged by
God Himself to go forward just another day leaning on Him. But it's
not a book for general consumption. For example, here's an excerpt
from April 26: "When we are called aside and can only suffer; when we are
sick; when we are consumed with pain; when all our activities have been dropped,
we feel that we are no longer of use, that we are not doing anything. But,
if we are patient and submissive, it is almost certain that we are a greater
blessing to the world in our time of suffering and pain than we were in the days
when we thought we were doing the most of our work."
11. TENDERPOINTS
From a reader--
"I wanted to add some thing I
have noticed with my fibro pain that may help with your belief in the arteries
being affected. I have found that mostly in my upper arms when I get the
shooting pains I can feel a pumping of my blood in that area. I believe it
has alot to do with the arteries. This may not be of any importance or
help in your research but I wanted to send in case it could help."
12. NATIONAL
DATABASE FOR RHEUMATIC DISORDERS
From a reader--
"I want to recommend you sign up to help the research of: The
National Data Bank for Rheumatic Diseases. They are doing amazing, up-to-date
research and their research positively affects doctors, hospitals, how pain
patients are treated and all kinds of other things. If you check out the
website, you can learn more. I've been a participant now for almost 3 years I
think. All that it involves is once every quarter per year, so 4 times a year I
think, they email or mail you their most current survey. It's long but it is
thorough for their research. Then every month or so you receive a copy of their
newsletter in your mailbox, to read all about how their research is helping and
mostly how your data is helping their research and in turn helping the medical
community learn how to better treat us. They also looks at many types of
illnesses, like Sjogren's Syndrome and Crohn's disease. So please check it out
and consider signing up as a member to participate and give your information for
their research. It really does make a big difference! Go to:
http://www.arthritis-research.org/ You can read the
official front page and then move your cursor over the words: Join NDB! at the
top left of the page and select which illness pertains to you and you'll be
taken to the signup page."
This includes
fibromyalgia.
13. UPDATE ON
BLACKCURRANT RECIPE
"I forgot to share that not only did it heal my
chronic reflux – but just as importantly it cured (and I mean
CURED) me of chronic constipation problems. These two symptoms,
together, made my life misery. It was so unbearable that I couldn’t see a future
because of the burning, and the pain etc. I remember going to a church
conference for about 9-days, and having no bowel movements, whatsoever. That’s
how bad it was. The mixture banished both symptoms. This was the first time that
I gained the insight that I could actually have some control over some of the
symptoms of CFS. The first time I felt empowered. It gave me relief...and
hope! Until both of these symptoms surfaced again recently...then
relapse. I felt extreme fear. But this time I knew to return to my
blackcurrant mixture, homemade-soups, and a gluten-free diet.
The fear was still there, though. That perhaps this time I wouldn’t be given a
second chance. But it’s working. The burning has stopped. And daily
regularity. Plus becoming human again...feeling better. I’m not glad I had a
relapse. But, it’s proven to me that this is a kind of formula for the symptoms
that are a part of my CFS-makeup. Who knows, one or more of your readers may be
suffering in the same way. I don’t know whether you can
modify/add to information in your previous newsletter to include the info
about the mixture having the potential to heal constipation. It is a well known
fact that flaxseed is recommended to people with constipation problems. I’m just
putting it out there as food for thought (excuse the pun LOL)."
14. DOM'S UPDATE
Thank God, I
am feeling better than I have in years! My doc has been trying to
cure my sleep disorder of 40 years www.fms-help.com/insomnia.htm. I am now taking a whole combo of meds (at miniscule doses), but together
they are working! He believes my other problems will go away if I can
get restorative sleep. Today I
actually felt like a normal human being! I will be updating my What I Use page at www.fms-help.com/what.htm, as soon as I am sure that this is going to be my regimen for
awhile. I continue to take my amazing supplements and follow common sense
lifestyle helps.
Well, we had a great piano
recital last Saturday! 24 of my students performed before an appreciative
and adoring audience of parents, grandparents and close friends.
No tomatoes were thrown! (Seriously, I was soooo proud of my students, especially the 5 adults who played in their very first recital!)
Til next
time,
Dominie
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.
