*** DOMINIE'S NEWSLETTER ***
MAY 2005
PAGE
2
DISCLAIMER: I am not a
medical doctor. I am a fibromyalgia/chronic fatigue syndrome survivor. The
purpose of this newsletter 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 newsletter.
11.
MYSTERY ILLNESS CASTING CALL
From a reader--
This seems like a place for a Million Letter Campaign
www.fms-help.com/letter.htm to
write to, the show premiered this Monday the 11th and was interesting to
watch.
http://health.discovery.com/centers/pain/castingcall.html
Mystery Diagnosis
Casting Call
Did you
spend years searching for a diagnosis before finding one? Did you see doctor
after doctor, desperately looking for an answer to the question "what is wrong
with me?" If so, your story may be of interest for the new Discovery Health
Channel series Mystery Diagnosis.
You
must:
have spent months or years searching for a correct diagnosis;
seen
multiple doctors and gotten multiple diagnoses; and
have ultimately reached
a diagnosis that both you and your physician are satisfied with.
The
eventual diagnosis doesn't have to be rare or complicated, but the "journey" to
solving the mystery should be tricky.
If this situation sounds familiar
to you, and you are eager to tell your story, contact Timothy Hedden, (212)
627-6053 x443.
A friend with
FMS called the number and this is what she reported--
"I called the
number and FMS has to many things that go along with it and they are looking for
someone who has been sick for years without getting diagnosis (ok..we fit
there), who has finally seen a doctor and been diagnosed (some fit there) and
have been cured and leading a healthy life (then we where we fall through the
cracks)."
12. NO MORE FIBRO AFTER COCCYX
REMOVAL
From a
reader--
"MY
NAME IS 'HOPE', AND I ONCE WAS A 'FIBROMYALGIA' SUFFERER TOO! I
WAS DIAGNOSED BY A RHEUMATOLOGIST, AND THIS WAS WHEN THE CRITERIA WERE ONLY
THESE SIMPLE SIGNS--TRIGGER POINTS, PAIN IN CERTAIN AREAS OF THE
BODY--CHEST, HIPS, AND THE LIKE. THE DIAGNOSIS CAME AFTER HAVING THESE
SYMPTOMS FOR 3 OR MORE MONTHS.
I HAD GOTTEN VARIOUS OTHER DIAGNOSES, FROM
OTHER DOCTORS AS WELL. YET IN 2003, WHEN I UNDERWENT A COMPLETE
'COCCYECTOMY', ALL MY SYMPTOMS DISAPPEARED, AND I NO LONGER NEEDED THE
MEDICATION I HAD BEEN USING FOR THE FIBROMYALGIA.
YOU CAN READ MY
STORY ON THE COCCYX WEBSITE UNDER http://www.coccyx.org/ -- GO INTO
PERSONAL EXPERIENCES, AND CLICK UNDER 'HOPE' 2003; TOPIC, I
FOUND MY FOUNTAIN OF YOUTH WITH COCCYX REMOVAL. [NOTE FROM
DOMINIE: THERE ARE LOTS OF INTERESTING STORIES ON THIS PAGE; HOWEVER,
IF YOU WANT TO GO DIRECTLY TO HOPE'S STORY, CLICK ON http://coccyx.org/personal/2003/hope.htm]
IT
SEEMS TO ME THAT THE COCCYX MAY PLAY A BIGGER ROLE IN OUR HEALTH THAN
IS
RECOGNIZED. I HAVE TRIED TO GET THE 'ARTHRITIS FOUNDATION' TO CHECK
INTO IT. YET ME AS ONLY ONE PERSON COULD NOT GET THEM TO DO IT. I AM
NOW 61 YEARS YOUNG. I STARTED WITH FIBROMYALGIA IN MY 30'S, AND
IT SEEMED TO WORSEN DURING THE MENOPAUSE PHASE. THANK YOU FOR
READING MY EMAIL."
13. CFIDS LINKED TO AIDS
Link
sent by a reader--
America's
Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue
Syndrome Epidemic And Its Link To AIDS
Some of the
fascinating articles in this site are:
A
Mysterious Organism Called A Mycoplasma May Be Peripherally Involved In
CFS
A Natural Immune
System Anti-Viral Pathway Doesn't Work In CFS
CFS Patients Have A
Brain Defect Similar To That Found In AIDS Dementia
[NOTE FROM DOMINIE: In 1990 my allergist in
Tallahassee, Florida, told me that I had something he called "IDS" (immune
deficiency syndrome). He said it was like AIDS, only not "acquired."
He said I was born with it. I had gamma globulin shots as a child because
I was sick much of the time. As an adult, I had extremely severe allergies
and much illness. I finally had a RAST test and also skin
testing. I had many 5's and 4's. My big irritants--the 5's--were:
mold, pollen, cat dander, dust mites, and grass. I learned to give myself
allergy shots--4 a week. The solution had to be diluted down a number of
times by the doctor before I could tolerate it. After several months on
the shots, I felt half alive instead of half dead....which is to say: it helped
only a little. I eventually stopped taking the shots after I moved and couldn't
get the solutions easily. My CFIDS story is at www.fms-help.com/fatigue.htm
I now use a natural immune balancer which has helped me tremendously. I
still can't be around cats, but the other allergens don't seem to bother me
anymore.]
14. LYRICA - NEW DRUG FOR
FMS
From a
reader--
University of Kentucky physician publishes fibromyalgia study in
Arthritis & Rheumatism journal
15. PANIC
ATTACKS
Got this as a spam email, but
interesting...lady finds help for panic attacks that
happened under stress--
16. MILNACIPRAN FOR
FMS
I heard from several readers on this
subject--
"Milnacipran is the first in a new class of oral
therapeutics known as Norepinephrine Serotonin Reuptake Inhibitors (NSRIs) that
decrease the uptake of both norepinephrine and serotonin, two neurotransmitters
known to play an essential role in regulating pain and mood. See http://www.cypressbio.com/."
"Most of you have heard of Milnacipran. It
will be the first drug out to specifically be sold as a treatment for FMS.
It is supposed to be out late this year, pending FDA approval. I've read
journals from many people in the studies and it's seemed to help most of the
people significantly. So far they've done 3 phases of studies and it seems very
promising. FYI - it's available over the counter in Europe - it's been
used there for 7 years. So if anyone doesn't want to wait till the FDA approval
and you want to try it now you can get it online - about $45/month I think. Of
course there are risks involved there as it's an anti-depressant. It mostly
raises norepiniphrine and also serotonin a little. Cymbalata raises seratonin
more than norepinephrine. Many studies show that it's the
norepinephrine that increases energy and decreases
pain."
[NOTE FROM DOMINIE: If you
decide to try Milnacipran and want to share your experience, please write me
dom@fms-help.com]
17. TV SHOWS PORTRAY
FIBROMYALGIA NEGATIVELY
Several readers were incensed about TV shows that
portray FMS/CFIDS sufferers as whiners:
"I did not see the Judging Amy
program--my friend called & told me about it. It was last season, they
reran it again in the summer. Was rather big time put down of cry
baby FM'ers, I gather. Think mother Tyne D. on show made a
comment to Amy, 'You are not going to turn into one of those complaining FM'ers'
(or something on that order). I did hear she got alot of mail on that one. Still
did the rerun."
"Did anyone watch Cold Case tonight? I
am so furious. A lady was giving evidence against her husband and he said,
"Don't pay any attention to her with all the meds she takes
with Fibromyalgia. Her and her made up disease." I
thought I was going to put my foot through the television."
"What they need to know is that we are not couch
potatoes nor are we malingerers. Rather we are
people struck down by an unknown illness and we spend hours
researching our illness, looking for the magic bullet ourselves. We are not
lying in bed watching soaps waiting for the medical community to come to
us! We are pro-active."
"They have been squashing our stories on CFS/FMS
from the 1980's. It is a global epidemic now. It
needs to be addressed. We need to stop the TV shows for making up scripts
saying things like, "Oh yeah...that made up disease fibro.....whatever it
is."
"I was disappointed with the portrayal of FMS on Cold Case,
which aired on either April 16 or 17, 2005. At first when
Fibromyalgia was mentioned I thought it was going to be positive. But
later in the show the "husband" told the wife she had a "made-up" illness.
I felt so betrayed by this and I just wanted to cry because it depicted
what so many of us face with FMS. It does seem that it reinforces the
misconception that we are just making this up to get out of our
responsibilities. I guess I'm just venting, but it does make me
angry!"
A fibromite tells it like it is--
I went to
http://www.cbs.com/primetime/cold_case/index.shtml#,
clicked
on the Feedback link at the bottom, and submitted this
comment--"Fibromyalgia is not 'a bunch of whiners.' What it is: a
bunch of previously productive and vibrant people stricken with a disease
that
we don't know enough about yet. Please don't ad insult to injury
by billing us so negatively like you did. We're having a hard enough time
with this 'invisible illness' as it is. I think an apology is
in
order. At the very l east, if you want me to continue watching your
show, and if you DON'T want me and hundreds of FM awareness activists just like
me to start putting the word out about what you are doing to us with your
uninformed, flippant comments."
18. MONEY DIVERTED FROM
CFIDS RESEARCH
"Have you read OSLER'S WEB by Hilary Johnson?
The story of CFS from about 1985-1995. It's a story of obfuscation &
denial from the start. The CDC was the worst. I strongly recommend for any
activist--guaranteed to make your blood boil. I'm still reading it....it's
700 pages and riveting! Nothing's changed!"
19. DR.
WHITCOMB
[This article has been removed.]
20. LYME DISEASE OR
FMS/CFIDS?
From a reader--
"I have read your website profile http://www.fms-help.com/ with great
interest. I too was diagnosed with CFIDS almost twenty years ago after
being sick at least five years before. There were several rheumatologists
who would say, "Oh no. It's not CFIDS, it's fibromyalgia."
Interesting that down the road I found out I had both of these illnesses
because they are part of Lyme disease. The extreme fatigue and
extreme pain are all part of Lyme. It took me twenty years to get a proper
diagnosis of Lyme disease and the tests that are available are the reason very
few people ever test positive and then are told you don't have Lyme you have
fibromyalgia or CFIDS. How a disease can be a political issue is beyond me
or any other sane person I know, but having been in both CFIDS support groups
and Lyme groups, I can only say the disease is one and the same. The only
difference is that those people who are fortunate enough to catch the Lyme
infection at the beginning never go on to be sick or those who go to Lyme
literate physicians even after years of being sick can get a proper
diagnosis. Getting better is another story."
21. MYALGIC
ENCEPHALOMYELITIS
M.E. is the name used in Europe and other
countries for the illness known in the U.S. as CFIDS. Here is a very
insightful article:
"This illness is to fatigue what a nuclear bomb is to a match.
It’s an absurd mischaracterization." - Laura Hillenbrand, Bestselling author
of Seabiscuit
22. FMS IS
AUTONOMIC NERVOUS SYSTEM DYSFUNCTION
Don't miss this fascinating article by Manuel Martínez-Lavín,
M.D. of the National Cardiology Institute of Mexico. It explains FMS
symptoms! People with FMS have a sympathetic nervous
system that is persistently hyperactive, but hypo-reactive to
stress!
23. BREAST REDUCTION TO
HELP PAIN
A newsletter reader writes--
"I just wanted to share something with you that maybe others have had done
and they can share their experience with me. On May 2, I am having a breast
reduction, with the hopes that it will help the pain in my neck, back, arms,
chest, etc., plus I have been experiencing shortness of breath and it is
supposed to help that as well. I hope that you will remember me in your prayers
that it will help with my pain."
[NOTE FROM DOMINIE: If
you have had breast reduction surgery and wish to share your
experience, please write me at dom@fms-help.com
Also, please remember this newsletter reader in prayer on May 2 and during
recovery.]
24. SPIRITUAL UPLIFT
CORNER
Parable of 4 Wives
(sent by a reader)
Once upon a time there was a rich King who had
four wives. He loved the
4th wife the most and adorned her with rich robes
and treated her to the
finest of delicacies. He gave her nothing but the
best.
He also loved the 3rd wife very much and was always showing her off
to
neighboring kingdoms. However, he feared that one day she would leave
him
for another.
He also loved his 2nd wife. She was his confidant and
was always kind,
considerate and patient with him. Whenever the King faced a
problem, he
could confide in her, and she would help him get through the
difficult
times.
The King's 1st wife was a very loyal partner and had
made great
contributions in maintaining his wealth and kingdom. However, he
did not
love the first wife. Although she loved him deeply, he hardly took
notice
of her!
One day, the King fell ill and he knew his time was
short. He thought of
his luxurious life and wondered, "I now have four wives
with me, but when
I die, I'll be all alone." Thus, he asked the 4th wife, "I
have loved you
the most, endowed you with the finest clothing and showered
great care
over you. Now that I'm dying, will you follow me and keep me
company?"
"No way!", replied the 4th wife, and she walked away without
another word.
Her answer cut like a sharp knife right into his
heart.
The sad King then asked the 3rd wife, "I have loved you
all my life. Now
that I'm dying, will you follow me and keep me
company?"
"No!", replied the 3rd wife. "Life is too good! When you die,
I'm going to
remarry!" His heart sank and turned cold.
He then
asked the 2nd wife, "I have always turned to you for help and
you've always
been there for me. When I die, will you follow me and keep
me
company?"
"I'm sorry, I can't help you out this time!", replied the
2nd wife. "At
the very most, I can only send you to your grave."
Her answer came like a bolt of lightning, and the King was
devastated.
Then a voice called out: "I'll leave with you and follow you
no matter
where you go." The King looked up, and there was his first wife.
She was
so skinny as she suffered from malnutrition and neglect. Greatly
grieved,
the King said "I should have taken much better care of you when I
had the
chance!"
In truth, we all have 4 wives in our
lives:
Our 4th wife is our body. No matter how much time and effort we
lavish in
making it look good, it will leave us when we die.
Our 3rd
wife is our possessions, status and wealth. When we die, it will
all go to
others.
Our 2nd wife is our family and friends. No matter how much they
have been
there for us, the furthest they can stay by us is up to the
grave.
And our 1st wife is our Soul. Often neglected in pursuit of
wealth, power
and pleasures of the world.
However, our Soul is the only thing that will follow us
wherever we go.
So cultivate, strengthen and cherish it now, for it is the
only part of us
who will follow us to the throne of God and continue with us
throughout
Eternity.
"For what will it profit a man if he gains the whole
world, and loses his own soul?" (Mark 8:36)
"And I
will say to my soul, 'Soul, you have many
goods laid up for many years; take your ease; eat, drink, and be merry.'
But God said to him, 'Fool! This night your soul will be
required of you; then whose will those things be which you have provided?'"
(Luke 12:19,20)
"And do not fear those who kill the body but cannot kill
the soul. But rather fear Him who is able to destroy both
soul and body in hell." (Matthew 10:28)]
25. DOMINIE'S PERSONAL
UPDATE
Thanks to everyone who wrote and contributed to this month's
newsletter. Together we can learn so much about FMS/CFIDS and what
helps. The internet is an awesome tool for keeping in touch and for
learning about illnesses and things we struggle with.
I greatly appreciate all who wrote me with
condolences in the death of my father
www.fms-help.com/eulogy.htm
I have shared many of your wonderful letters with my mother and they have been a
comfort to her. It has been 3 months since Dad has left us, and we miss
him so deeply, but we know he is with our Lord now and does not have
any more pain or sorrow.
I had been under a great deal of stress during Dad's illness,
death, the funeral and then concerns for my 83 year old mother. My heart
started racing and my blood pressure went up. I was crying every day
and grieving so intensely. Frankly, my nerves were shot! A
friend from church recommended her doctor, and he was wonderful! He
prescribed just a tiny amount of two medications--Atenolol for blood pressure to
slow my heart down, and Lexapro for depression/anxiety. He said I had
too much adrenaline in my body. I feel much better and believe I have
recovered from the mental and nervous exhaustion from the final
grueling months of Dad's life.
As far as my general health goes, I am doing well.
Many days I have no pain or fatigue
at all. However, 2 months ago I suddenly developed an annoying problem
with hip-knee-arch-toe pain. Where I work involves many stairs and many
trips up and down every afternoon. Last week, one of my young students
actually drew me a get well card showing a cane in my hand! I was seeing
my chiropractor (one hour away), wearing expensive orthotics, wearing a
TENS unit throughout the day, etc. (The TENS unit helped my hip, but
I couldn't wear it on my knee/toe area.) Then Sunday, an elderly friend
from church showed me an exercise that helped him when he had a similar
problem. It worked like a miracle!!! I have been pain free for
the past 5 days from this annoying affliction! What a relief!! (I
will be 54 this year, but don't like to think of myself as "over the hill"
yet! HA!)
Here are just a few links on my site that you may find
interesting--
I have a lot of helpful links on my FMS/CFIDS homepage
http://www.fms-help.com/ Look in the
bright yellow box on the left of that page. You will
find "getting disability" tips, marriage advice for Christian wives, articles
about FMS and mycoplasma infection, why "trying harder" doesn't work for this
illness, a page for those who feel suicidal, etc. If you want information
on specific topics related to FMS/CFIDS, use the SEARCH feature on my
homepage.
Faithfully yours,
Dominie Soo
Bush
"When the
world pushes you to your knees......you're in the perfect position
to pray!"