DOM'S NEWSLETTER
September 17, 2008
A
compassionate, informative newsletter for people with Fibromyalgia (FMS),
Chronic Fatigue & Immune Dysfunction
Syndrome (CFIDS) or Myalgic Encephalomyelitis
(ME).
22 topics in
PURPLE. Readers' comments in
BLACK. My comments in
TEAL.
Don't miss RED
topics!
1. READERS
WRITE
"Thank you from the bottom of my heart
for all the time and effort you put into your website AND your
newsletters -- I've found so much information, encouragement and
hope."
"I just finished reading your 100 tips
www.fms-help.com/tips.htm. Thank you so much for publishing such a wealth
of information!"
"Keep writing.
You are a wonderful writer."
"Thanks a million for sharing all this info www.fms-help.com. I admire your
strength and courage in creating and maintaining the website
and putting together the newsletter."
"It's very kind of you to help other people who are
struggling, but I guess you know how it
feels."
2.
HYPOTHALAMITIS = ME/CFIDS/FMS?
Watch Dr. Mickel's video about his
theory that ME/CFIDS/FMS is casued by an overactive hypothalamus
(hypothalamitis)
3.
LYRICA
Reader 1--
"I know I just said yesterday that I
was back on Lyrica, but 3 days was
pppenough for me! That's 3 times now I've
tried it and then given up on
it over the past year. I just can't stand the
side effects. I'd
rather be in pain. This is a never ending
cycle."
Reader 2--
"I took Lyrica for about 6 months and
it did help some. But...the side
effects were not good for me. I was very
irritable, depressed (even
more so), gained about 30 pounds!!!!!! I slowly
came off of it... and
it was very noticeable at first, but now I'm glad I'm
off of it. It
has helped a couple of people I know, but it wasn't for me. I'm
at
the point now that I deal with the fibro as best I can and take it
one
day at a time. If pain is very intense, then I do have pain meds."
Just have to
comment here......if nutritional supplements had the awful (and dangerous) side
effects of prescription drugs, the media would be on it and the whole
world would know about it. But drug manufacturers are getting away
with murder (literally)! I am all FOR the many helpful drugs out there,
but so far, Lyrica is getting low votes from my readers. I have been a
"guinea pig" with fibro since 1982 www.fms-help.com/fibro.htm. Have been through some awful drug reactions and side
effects. I much prefer using natural things to try to help myself than
taking drugs, if I can avoid it. A list of things I currently use (meds
and supplements) is at www.fms-help.com/what.htm. Each of us is different, but you might find some good
ideas there.
4. HERBAL
TEAS HELP
From a reader--
"I wanted to share something
that radically improved my energy levels
tonite without stimulating
me. I cannot claim it will work long term.
It worked tonite for me,
and I was so relieved since my fatigue levels
have been totally
disabling!
I boiled filtered water and added one organic yerba mate tea
bag and
one organic spearmint tea bag to the water.
I then
added 1/4 cup of the tea to an 8oz empty bottle and filled it
the rest
of the way up with room temperature water and a few ice cubes.
I sipped
it slowly- actually only drinking about 1/2 cup of the entire
bottle.
My energy lifted dramatically, I felt calm, happier, and free
of
the intense fatigue I usually have.
I have tried yerba mate in the past
with good results and then not so
good results. But I think this time
the key might have been diluting
it and drinking just a little bit.
What a huge difference it made!
Even having relief for an evening is a
huge blessing."
Interesting! I have been getting great results with
essential oils (plant essences) taken internally or diffused and
breather or applied topically. Several specific ones work extremely well
for many of my health complaints. Write dombush@bellsouth.net for essential
oil information.
5. AOL
SHILLS FOR BIG PHARMA
"AOL's Dangerous Vitamins" (1) is loaded
with much more than your recommended daily dose of misinformation. "Medical
experts are concerned that you may be at risk for vitamin overload"! "Be wary of
high doses"! "Increased risk of all-cause mortality"!
Yes, AOL surely wants you to stop taking
vitamins. Dangerous, they say. Overdoses, they say.
Baloney. Where are the
bodies? According to 24 years of nation-wide data collected by the
American Association of Poison Control Centers, there is not even one
death per year from vitamin "overdosing." (2) Half of the population
takes them, and the more they take, the healthier they are. (3) Vitamins have
long been proven exceptionally safe, even in high doses. (4)
How come AOL does not know that vitamin
supplements are safe and effective? Or do they? Let's take a closer look. A
small webpage note indicates that the "Dangerous Vitamins" article is "presented
by Journey for Control." Say, guess who "Journey for Control" really is? Click
the link and see for yourself: "Journey for Control is a trademark of Merck
& Co., Inc." Yes, that is indeed the huge drug conglomerate. How about that:
an anti-vitamin article promoted by a drug company." [read entire article at
link above]
6.
CYMBALTA
From a reader--
"I am currently coming off Cymbalta
(antidepressant) after being on it for 3 years. The side effects were
horrible and the withdrawal even more horrific, in fact I am still suffering
withdrawal after 26 days. My experience with this drug has reconfirmed my
belief that doctors/pharmaceuticals really do not have any help for us, in fact
they do MUCH more harm than good."
7. SUPPORT GROUP IN DALLAS, TEXAS
From Shelley--
North Texas Fibromyalgia Support
and Meetup Group - http://fibromyalgia.meetup.com/285 - "The North Texas FREE Fibromyalgia Support Group is made up
exclusively of people with FMS. We ask professional practitioners to come to
speak with us about treatments that have been successful for members. Members
also have related conditions, including chronic fatigue syndrome and arthritis.
We meet weekly for socials and monthly for lectures as well as online to provide
you with a support network so that the quality of your life is enriched. We
don't want to merely survive, we want to thrive!"
8. GRIEVING OUR PAST
LIFE
From a reader--
"I wanted to comment about the comment at the top of the newsletter
www.fms-help.com/082708.htm -
it was about grieving over our past life. When I read that it really hit
home! I don't know why, but it seems just within the past few months it has
really sank in that this is not a nightmare I'm having & I'm going to wake
up & I'll be my old self again. I've really been grieving over the old me
& trying to cope with the fact that my life now is the new me! I was
told in 1995 that I have FMS & at that time I thought, Oh, they'll find
something & fix me right up & I'll be back to my old self! Then after a
while, I thought, Well there's time, they'll figure out something. Then this May
I turned 40. I don't know if that is in the back of my mind or what, but I feel
like there is no longer time to help me & this is going to be life, for the
rest of my life."
This reminds me of a phrase Don Piper uses in his book
"90 Minutes in Heaven" after surviving horrific injuries in a car
accident. He calls his new broken life "the new
normal." (He was a young father of 3 when the wreck
happened.) I have had a long time to come to terms with my limitations
from FMS/CFIDS (26 years exactly). But there is a time of grieving when
you realize you can no longer be the dynamo you used to be - at least not
without severe payback. You can read my personal recollections about
being diagnosed in 1982 and how I felt emotionally back then: www.fms-help.com/interview.htm (Dom's interview with Bella
Online).
10. FIBRO SUPPORT GROUP
COOKBOOK
From Carla Bourg cbourg@comcast.net--
"The Mandarin Fibromites (area
of Jacksonville, FL) have published a cookbook with the proceeds going to
FMS Research and Awareness. There are 197 recipes bound in a hard
spiral cover. The cost of the book is $10 and the book states $2 for
shipping but cost of mailing has gone up considerably so we would like to
request $3 for shipping. - Carla"
11.
FIBROMYALGIA BRAIN FOG
From a reader--
"FOG MAGAZINE" http://www.fogmagazine.com/fibromyalgia-and-brain-fog/#more-387
(Write dombush@bellsouth.net to find out
what I do to relieve brain fog.)
12. THE
HYPOTHALAMUS & AUTONOMIC NERVOUS SYSTEM
http://biology.about.com/gi/dynamic/offsite.htm?site=http://thalamus.wustl.edu/course/hypoANS.html
Many of our FMS/CFIDS
symptoms are coming from the hypothalamus area of the brain. Also, read my
articles at www.fms-help.com/autonomic.htm
and www.fms-help.com/nervous.htm.
13. WHAT'S GOING ON
IN OUR BRAIN?
From Dom's message board--
NEUROTRANSMITTERS IN FIBROMYALGIA &
CHRONIC FATIGUE SYNDROME
http://chronicfatigue.about.com/od/treatingfmscfs/a/neurotranshub.htm - "Fibromyalgia (FMS) and chronic fatigue
syndrome (CFS or ME/CFS) long remained mysteries to medical science, and we're
just now getting a picture of what's going on in the body, and especially the
brains, of people with these conditions. One thing that research has shown, time
and time again, is that when you have FMS or ME/CFS, your neurotransmitters are
out of whack."
Fascinating article!
14. CHRONIC
INFECTIONS MAY BE YEAST-RELATED
From a reader--
15. FIBRO-FRIENDLY
DOCTORS
16. ANTI-VIRALS FOR
FMS/CFIDS
From a reader--
"The New Fibromyalgia Remedy: Stop Your
Pain Now with an Anti-Viral Drug Regimen" - new book by Dr. Daniel C. Dantini available at
amazon.com.
17.
RESTRICTED ACCESS TO NUTRITIONAL SUPPLEMENTS
I have been hearing from Canadian and
Australian readers who are not able to get nutritional supplements that are
commonly available here in the U.S. Here is just one of the comments I
received:
"I wanted to purchase some L-tryptophan, but this too is a
'banned substance' in Canada. I tried to purchase it on ebay...it
was mailed 4 weeks ago and still has not arrived. I know that it was
mailed because I have a tracking number for it. I have a feeling that it
may have been confiscated at the border. At least in Canada we can get the
bloodwork for viruses and get tested for delayed food intolerance."
18. READER SICK FROM
MOLD
Got this email from a reader who is very
sick from mold in his house that was caused by a water leak. He has been
extremely frustrated trying to get medical and legal help. Other members
of his family are now sick also. If you know of a mold attorney, write
dombush@bellsouth.net and I will
get the information to him. (My own devastating encounter with mold is at
www.fms-help.com/mold.htm, so I
have a lot of sympathy for this reader!) I have condensed several of
his emails into this statement--
"Doctors may think 'LAWSUIT' and worry more about that
than helping the patient. If you look at the CDC [Center for Disease
Control] site, I think they say contact your doctor. But the
doctor doesn't know squat, as they have no formal education in this [mold
sickness]. So its a big run around trying to get help."
19. DOM'S SUPPORT GROUP
ON YAHOO
If you want to post any questions or thoughts about fibromyalgia
or chronic fatigue syndrome - or perhaps just "vent" on a bad day, visit my
message board at http://health.groups.yahoo.com/group/dominie.
(Sign up for Daily Digest or Web Only to avoid a lot of email.)
20.
D-RIBOSE
I'm revisiting this topic of D-Ribose from past newsletters
www.fms-help.com/newsletters.htm,
because a friend with a defibrillator has been using D-Ribose lately and said he
noticed the literature stated it could help people with fibro by affecting the
ATP (energy producing) cycle. My friend takes 3 tsp. per day to avoid
heart failure. I tried D-Ribose awhile back, but maybe not long
enough or in enough quantity. I am feeling pretty good these days with all
the other stuff I take
www.fms-help.com/what.htm, but if
you want to share your (positive or negative) experiences with D-Ribose, please
write
dombush@bellsouth.net.
"Inquiring minds want to know...."
21. FIBRO &
FATIGUE CENTER
From a reader--
"I am struggling with Fibromyalgia and CFIDS.
While some of my
symptoms are getting better, thanks to the wonderful doctors
at the
Fibro and Fatigue center, I had to travel [a long way] since none
of
the doctors here believe it can be real and won't even try to listen
to
me. I have several chronic viral infections. I am taking Valtrex
3x's daily
for them: ebv, cmv, herpes1 (cold sores, though I have
never had
one,) Coxsackie B virus. My natural killer cells are a 10
so I have very
little immune function. I do daycare which my doctors
said I need to fnd
another job, these little ones carry so many viruses."
And here is an update from the same
reader--
"The Fibro an Fatigue Center saved my
life. Seriously. People used to
ask me what it felt like, my fibro, and i
told them this is what
someone who is dying must feel like. i felt all my
"life's energy"
slipping away. It scared me to death. No one here would do
anything
and tried to shove anti-depressants in me. I searched online and
found
the center and had them send me a packet. I had to do the
out-of-town
package of course. Insurance paid for my labs, not the office
visits.
The whole visit, including my 4 monthly phone visits which were
an
hour long was $1,400. i know it is expensive and we had to do a lot
of
rearranging [financially]. i felt terrible for this but remembered
the
look on my son's face when asked to do something and i always had
to say no
since just blinking took too much effort. They drew 40 vials
of blood the
first visit!!! Tested for everything under the sun and
gave me a diagnosis. i
cried the whole time because they believed in
me. it was worth any money i
had to pay. i have sent several friends
and one took a loan of equity from
her house to go and is doing much
better. They are my angels, and are very
understanding and patient.
Sorry to make this so long but am willing to do
anything to help
others. P.S. i played football with my son
yesterday!!!!!"
And a final update from the same
reader--
"My pain is almost nothing. i get occasional but slight flu-like
achiness. I tire easily but can at least mow the lawn! i sleep well
and am no longer on any sleep meds, 2 months of Ambien got my patterns regular
again and i no longer wake in the middle of the night with pain. i also
take Melatonin at times because the center likes all natural supplements when
possible. do have some stiffness in the morning but i move slowly and it
eases after a couple of hours or a hot shower. My ears do ring some but I
think that is because of the Lyrica. I am a little sensitive to noise and
bright light. Other than that i have no other symptoms any more."
22. DOM'S
UPDATE
Currently, I'm feeling good much of the time and functional
(working = $$$) thanks to an arsenal of meds, supplements, essential oils,
and other protocols that help pull me out of just
about any "fibro flare." I learned these things along the
way since being diagnosed with fibromyalgia in 1982 www.fms-help.com/fibro.htm.
My personal list of helps is at www.fms-help.com/what.htm.
I would much rather use natural things and avoid
drugs when possible, although I have to take meds for my sleep
disorder. We are all different, but these are some things that just make
sense to try! I'm not a doctor, just a patient whose been battling this
condition for a very long time. I have been a "guinea pig" since I
developed fibro 26 years ago, trying sooo many things over the years.
The latest research now shows that FMS/CFIDS has something to do with our brain, spinal cord and
nervous system, primarily the amydala, hypothalamus and
hippocampus. My husband and I were talking about the
neck, head and spinal cord injuries I've had along the way since childhood -
I'll list a few here (could any of these have anything to do with developing FMS
at age 30??)--
age 10 - hit over head with shovel accidentally by neighbor girl
- "saw stars" and almost passed out
age 12 - stopped a speeding tobaggan with my tailbone! I
was the last person on the back of the toboggan. We went over a bump and I
fell off. The toboggan was loaded with people and my foot was caught in
the leather strap so I couldn't free myself. I was dragged down the hill
until my tailbone was caught by a small sapling and stopped the toboggan.
I remember being curled up in a fetal position in the snow - paralyzed from the
shock and pain for a time.
age 12 - a car plowed into the car I was riding in. There
were no seat belts back then and I was thrown across the car.
age 14 - dove head first (hands behind back) through an inner
tube and didn't turn quick enough - hit my head violently on the bottom of the
pool...became disoriented and couldn't tell which way was up. My brother helped
me get out of the pool. I had a HUGE knot on my forehead from the accident and
had to start my first day at my new high school looking like a monster!
(Thank God I didn't break my neck, become paralyzed...or die!)
age 28 - was street-skating in my neighborhood and thought I
could "walk" my skates over a curved concrete place between the street and the
sidewalk. Instead my skates started rolling - I skated up the curve and
came crashing down on...you guessed it.....my tailbone. Had it x-rayed -
it wasn't broken or even cracked, but was extremely painful. Sat on a
"donut" at work for about a month.
age 28 - hit by a drunk driver one night on a 4 lane highway in
Jacksonville. My car flew over the median and was then struck again by an
oncoming car. My car spun around and landed on a service road on the other
side of the highway. My car was totalled, but I walked away (shaking) -
seemingly "without injuries." My FMS began about 18 months later.
30's and 40's - several "rear end" collisions caused by people
not watching where they were driving and got whiplash.
I know we've all had injuries growing up, etc., but my husband
wondered if these incidences could be partly the cause of my fibro. My
mother says no, that she has had many injuries in life (she is 87 and runs
cirlces around me!)
I was also a sickly child (poor immune function), so maybe these
injuries had nothing do with my fibro www.fms-help.com/fibro.htm starting
in 1982. My CFIDS story is at www.fms-help.com/fatigue.htm.
(Most of us attribute the onset of our fibro to stress - either physical or
emotional.) I polled my readers recently about what jobs they had at the
time of their fibro onset - the interesting results are at www.fms-help.com/occupation.htm.
Well, fast-forwarding now to the much
more pleasant present!.....
I have been very busy and happy teaching piano this fall
with our music school back in full swing www.fms-help.com/students.htm,
and also being a musician at church. I am
very blessed with my students and church family! Another huge
blessing is my husband who understands the daily
challenges I go through. Without his support, I wouldn't be able
to support you! Last week my husband gave me a card that shows a
little dog climbing a steep mountain - hanging on for dear life by his
fingernails! The outside of the card says, "If it's true that adversity builds
character...." and inside it says "...your character's been getting quite a workout lately!
Hang in there!" Then my husband wrote, "When you're hanging off the cliff and you're just about to let
go, God reaches down and pulls you up!" I think all of us can use
that message of encouragement today!
Your fibro
friend,
Dominie
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