DOM'S FMS/CFIDS
NEWSLETTER
February 26, 2009
A
Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue
& Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.)
and their families.
28
topics below in blue. Readers comments in
black. My comments in teal.
Don't miss red topics!
1. READERS
WRITE
"Your website has been a wealth of information for me and I am beginning
many of the things on your 100’s list
www.fms-help.com/tips.htm to see if any help
me."
"Thank you for your commitment to keep us all
informed! Your info is
amazing."
"I appreciate your site
www.fms-help.com so much. I have
tried to work for the last 6 years with chronic fatigue and am
just getting worse and worse."
"I have been suffering with
fibromyalgia. I have tried just about every medication on the market. I
prayed this morning for guidance as I began searching again and came upon your
website. What a blessing. I am feeling worthless and guilty for
letting my family down."
"I found your Emergency
Marriage Manual www.fms-help.com/marriage.htm. I’m
so happy with it, not only for myself but because I can use it also in my work
as a medical doctor when counseling married women. It was a real surprise to
read it!"
"I stumbled upon your website while doing a bit of research on
my fibro and insomnia. It has been a very debilitating thing
for me. I have ridden the horrible roller coaster that we all seem to
ride. I've dealt with unbelieving family and friends, battled with
unknowlegable doctors, and finally just resigned myself to live with
it I am inspired by your story www.fms-help.com/fibro.htm."
"I am reading your web site
www.fms-help.com. Thank you soooooooo much for all this
information. I'm hoping my running
into your site was from guidance above because I've sure been
asking."
"I am 21. I was diagnosed
with fibromyalgia 2 years ago after several years of not knowing what was
causing my pain. After graduating at the end of last year, I soon realized after
2 months of full-time work that I would not be able to continue and have since
gone to part-time. I have only just discovered your website and
have found it very comforting and helpful."
"I have had CFS/FMS and all its
nightmares following CMV viral pneumonia which I acquired
looking after Homeless people in our voluntary Christian drop in centre 10 years
ago now. As you say, nobody thinks there is anything wrong as
we look OK!!! The pain and frustration along with IBS and all the rest is
horrendous. Only my faith in God keeps me going. Thank you for all your
encouragements."
2. TOO
MANY MEDS?
From a reader--
"I want to comment on taking too many
meds www.fms-help.com/021009.htm.
I now take 19 prescription drugs. It gets so I don't want to go to the
doctor with a complaint, for fear that I'll end up with a new prescription
medication. I now often refuse to take antibiotics or Prednisone, even
when I'm sick. I just don't think it's good for me anymore. The
story I really want to tell you, though, is about my friend's mother, who has
Alzheimer's and is in a nursing home. More than a year ago my friend
received a call from the home saying that her mother's health was failing
and that she might not live another 24 hours. The doctor asked my friend's
permission to stop administering her mother's medications--18 prescription
meds--and my friend agreed. By the time my friend traveled from NC
to her Mom's PA nursing home, her Mom was doing slightly better.
Twenty-four hours came and went and her Mom improved even more. Several
days went by and she got even better. Now, more than a year later, her Mom
is fine, except for the Alzheimer's. Apparently the 18
prescription meds were literally killing her. Stories like this
scare me. And yet, it's easier said than done to simply stop taking
prescription medications. Finally, at the age of 61, I am learning to
take more responsibility for my own health and to participate
more during my doctor visits. I ask why I need a medication, I ask
what it might do to me, I ask what will happen to me if I don't take it.
Then I try to research it all myself too, just to be sure. Just yesterday
I told my doctor that I need to stop taking so many meds and she actually
agreed. I'm hoping that we can now work together to acheive this,
and like my friend's mother, that it might even improve my
health."
From Dom: Take
charge of your medical fate. Ask questions. Get
answers. I know of 3 women who went to psychiatric lock-up to be
detoxed from an average of 28 prescription meds. Later their docs put
them on the 4-5 they actually needed.
3.
MINACIPRAN
Reader 1--
"I tried Milniciprin last year and it
gave me the worst headaches I have ever had in my life! It seemed like it helped
the other pain in my body a little, but I just couldn't stand the horrible
headaches all the time!!"
Reader 2 (male)--
"In regards #5 at www.fms-help.com/021009.htm, I
tried Milnacipran last year , bought it from a oversees pharmacy under the name
Exil, It was 25mg and I didn't try it long enough and at high enough
dosage to relate any experiences. Everything in the package was in
different language. Now I see some recommend much higher dosage. I
may try anew."
4. DARK
CHOCOLATE
From a friend--
"Flavonoid-rich dark chocolate intake
significantly improved coronary circulation in healthy adults, independent of
changes in oxidative stress parameters, blood pressure and lipid profile,
whereas non-flavonoid white chocolate had no such effects."
5.
QUESTION ABOUT TRIGGER POINT INJECTIONS
"I have read in a Fibromyalgia and Myofasical
Pain book that trigger point injections might not work if you have
lack of oxygen. My question is: I have 3 valves that
reguritate. One is my pulmonary that makes your body get oxygen, and my EF
(ejection factor) is at 59%. Would that be a perpetuating
factor for me getting my trigger point injections? - Heidi heidilhlokey@yahoo.com"
6.
ALTERNARIA
From a reader--
"I had a lump come up on my face and
when they biopsied it they found Alternarosis. I haven't been to a
tropical place recently; I am not HIV positive; I do not test positive for
lupus, etc. Supposed to be in immuno-compromised people. Drs. can't
figure out where it came from. I have had fibro for years (looking back,
probably since childhood--I had "mumps" once or twice a year, very swollen
glands with big lumps--missed about 1 week of school each time--also sent
home for low grade fevers and fatigue other times) I did have untreated Lyme
disease about 20 years ago--had the classic bullseye, fever etc. but was told by
Dr's "no such thing in our State" Finally a local Dr. got a case confirmed
and I was then put on antibiotics for months. ANYWAY--the medicine for the
Alternaria is very expensive, and I have been on it for about a month and am
feeling better than I have in a long time!! From what I've been able to
find about Alternaria is that it is starting to be diagnosed more often. The
medicine I am taking is VFEND. I just thought there might be a tie-in for
some of the other folks out there. You never know. Hope it might
help someone."
7.
DEMEANING NEWSPAPER STORY ABOUT FIBROMYALGIA
From a reader--this is what she wrote
to our local newspaper in response to the article they printed:
"I am writing you on behalf of all the
fibromyalgia suffers worldwide. Today's article on page A-3 was an article
that demeans all of us with Fibromyalgia. The more horrible part was the
"Mind of Matter?" stating that "Patients diagnosed with fibromyalgia are
more likely to have a history of mental illness, be overweight and economically
disadvantaged. Some doctors say their suffering may stem from difficult
circumstances rather than disease."
I run a Support Group for People with Fibromyalgia
and I can tell you that the above is not the case. We are all type
"A" personalities that have been forced to change our lives due to this horrible
disease/syndrome. There is not one of us that would not give up
our "great" disability checks for the more profitable lives we were living
before the chronic pain and fatigue. We may be overweight now due to not
being able to exercise but this was not the case before the chronic pain and
fatigue started not after the diagnosis. We all had the symptoms years
before we actually got a diagnosis. No, we are not hypochondriacs.
Fibromyalgia is an invisible disease
just like many other invisible diseases that are out there. Thank goodness
we don't look as bad as we feel.
Dr. Frederick Wolfe, Director of the National
Databank for Rheumatic Diseases, Matthew Perrone (Associated World Press) and
Kelly Glasscock (Associated Press) should walk in our shoes just one day and
then say if they think we have a mental disorder.
I think that The Florida Times Union should print
another story showing the side of the Fibromyalgia suffers. If you have
the courage to do that I have a list of people that you could speak
with."
From Dom: This
article is grossly inaccurate. Read the list of occupations my readers had
at the time they developed FMS/CFIDS www.fms-help.com/occupations.htm. I don't see any slackers here.
8. SPLENDA
DANGERS
http://articles.mercola.com/sites/articles/archive/2009/02/10/New-Study-of-Splenda-Reveals-Shocking-Information-About-Potential-Harmful-Effects.aspx
From Dom: It's
hard to know what is more dangerous: obesity or an artificial
sweetener.
9. CHRONIC
FATIGUE SYNDROME LINKED TO A STOMACH VIRUS
From a reader--
10. NEW
TEST FOR PEOPLE WITH CFS
From a reader--
"I thought you might be interested in this it
is about a new test for people with CFS. I read a short article about it
in this month's "Our Toxic Times." The article is complete with charts and
pictures: Chronic Fatigue Syndrome and
Mitochondrial Dysfunction http://www.ijcem.com/files/IJCEM812001.pdf."
11.
DRUGMAKERS' "PUSH" BOOSTS MURKY AILMENT
From a reader--
Vote if fibromyalgia is real or not:
12.
GARDASIL TRAGEDY
From a reader--
Gardasil vaccine ruins life of teen
girl. Article and video from Rocky Mountain News -
pass this on to friends or family with
daughters--
13. USE OF
LITHIUM IN FIBROMYALGIA
From a reader--
"Use of Lithium in
Fibromyalgia was written by an anesthesiologist,
who herself has Fibro and read how 300 mg of Lithium reduces her pain by
70-80%."
14.
READER HAS SEVERE HUNGER
"The fatigue has become so bad for me
I can't hardly function, and my anxiety is horrible, and the insomnia has become
worse. Have you ever talked to anybody who had severe hunger that
accompanied the chronic fatigue? I have had this gnawing hunger
for years and about 5 weeks ago the fatigue became so bad I could
hardly get out of bed, at the same time the hunger became tremendously worse and
now I am in a constant state of starvation and it doesn't matter how
much I eat, what I eat, I am always hungry to the point that it prevents me from
sleeping? My weight goes up and down. Lately I have been
gaining weight because the hunger is so severe, but I have been overeating
because I am depressed and tired. 2.5 yrs ago I gained 45 lbs then I
lost it all on a very very strict organic diet. I am not sure about
parasites. I am not taking ambien. My psychologist does think that
something could be wrong with the hypothalamus and the pituitary. I am
23." - Christiana pianobassgirl@gmail.com
15.
PARATHYROID GLAND
From a male reader--
"So many
women who are debiliated [see www.fms-help.com/021009, Topics 3]
should have a test called "Parathyroid Hormone test." If you go to this
website by a famous doctor in Tampa, it is amazing how Parathyroid Hormone
malfunction have many of the symptoms she has. The testimonials from some
very influential people who had their malfunctioning Parathyroid Glands taken
care of (a 20 minute outpatient operation) and the change it has made in their
lives is nothing short of amazing . Prior to this I had never heard of
this. I think the lady in #3 should read this website http://parathyroid.com. It
is very informative and rich website and has a video of the actual 15 minute
operation it takes, with no blood loss at all."
16. ARE CFIDS & AIDS
RELATED?
www.fms-help.com/aids.htm -
50 intriguing topics from Neenah Ostrom. Responses
below--
Reader 1--
"Yes. Both were deliberately created
under government contract by Litton Bionetics. They needed two biological
warfare agents 'refractory' to the human immune system, one lethal, one less
lethal, AIDS and CFIDS. I know that at first blush that sounds like some kind of
insane communist propaganda, but I have done the research. You may find a
brief synopsis here. Radio Liberty Newsletter July - August, 2003 http://www.radioliberty.com/nljulyaug03.html."
Reader 2--
"Lets get facts and not scare CFIDS
survivors ,that CFIDS might be related to AIDS. Over and over again, it is
known that there is no connection between them."
17. "50
THINGS YOU SHOULD KNOW ABOUT THE CFS EPIDEMIC"
18.
LYME
From a reader--
"I tested positive for Lyme about five
years ago, along with several other viruses. I was terribly sick at that
time, with what I believed to be fibro. I have actually gone
through two full years of feeling like I am healed! Now, all of a sudden,
upon enduring a bit of stress, I am having symptoms again, such as more frequent
herpes outbreaks, fatigue/brain fog, both swelling (painful swelling) of two of
my fingers and knots on my knuckles, and some joint pain (the muscle and joint
pain was by far the worse in my past - there were days I couldn't move, and I
couldn't get around my kids for fear of flinching)."
From Dom: Google
fibromyalgia lyme fatigue. I had a Lyme test 2 years ago that came back
negative, but for many people their FMS/CFIDS is actually Lyme.
19.
TRAUMATIC CHILDBIRTH
From a reader--
"I have had F.M. Since 1999 after
my first daughter was born.
I had an awful & traumatic birth
&
was very ill afterwards which is what im convinced set it off.
It started with pains in my hands,
then my knees & then
started to spread everywhere to the point
where I couldn't walk more
than a few steps & ended up bedridden
for 2 months hardly able to
move. I remember being so scared not
knowing what was going on & a lot
of people close to me thinking I
was making it up for attention. I
finally got diagnosed 3 years later
& although finally knowing what it
was helped, the sadness I felt
at being told there was no cure was
awful & for a long time I felt
so depressed. If it wasn't for my
daughter to keep me going I think I
would have given up! Since then I
have researched the Internet over
& over & found lots of useful info,
more so over the last few
years.
I just wanted to share the main things that have helped me with
your
readers. These are: diet; no wheat, low fat, low sugar,
good GI, no alcohol, no
nightshade vegetables. Walking; as much
or as little as you can manage.
Co enzyme q10; 60-120mg a day. Rehydration
drinks: dioralyte sachets.
Hot bath before bedtime & some sort of
meditation technique.
Try to get rid of any stresses in your life you can,
mine was my ex
& his family. I've since met a beautiful man &
we now have 4
children who are what keep me going no matter how ill i
feel.
Find a purpose, you need a reason to get you out of bed.
Learn to
say NO! I hope some of this helps at last one person out
there!"
20. DR.
LAM
"I was wondering if in your next
newsletter you could inquire with your readers regarding Dr. Michael Lam.
He is a naturopathic physician specializing in anti-aging. His web site is
www.drlam.com.
I happened across his web site when looking for answers to my extreme
fatigue. I emailed him and he actually called me (he said my email
explaining all my health issues and my young age really spurred him on to want
to help me) and started talking to me about how he could help me and what I
could do to reverse what I have felt to be a downhill spiral of my health in the
last ten years. What he said made so much sense and I’ve followed his
treatment now for about 3 weeks. I can’t expect any miraculous or
short-term changes, but I believe I am on the road to better health. I was
just wondering if any of your readers had ever heard of him or followed any of
his treatment protocols?" - Beverly BluePtMom@Comcast.net
21.
FORGIVENESS
From a reader--
"I understand the reader's response
whose father was took advantage of the kind attitude of her mother www.fms-help.com/021009.htm.
I experienced that in my marriage. However, I now realize that I was
guilty of "trying" to be nice and was still harboring unforgiveness in my
heart. I stuffed my feelings in order to behave like a Christian.
Consequently, instead of exploding, I imploded--pouring toxins into my
system. I have since learned to forgive and understand that it is
in forgiveness that I am released from the torture of my soul (Read Matthew
18:32-35) and eventually my body. Just because you forgive someone,
doesn't mean that what they did was OK. It just means that they are not
controlling your life (or health) anymore! Forgiveness sets YOU
free."
22. WHERE
IS GOD?
http://www.WhereIsGodMinistries.org -
Sherri's life changed dramatically at age 27 when she was diagnosed with MS and
Lyme disease. She and her husband, Wayne,
quickly discovered that others living with debilitating conditions were asking,
“Where is God?” in their suffering. Therefore, Wayne founded, Where Is God Ministries (WIGM) for
others who suffer chronic illness and often endure misunderstanding from the
healthy world.
http://www.WhereIsGodMinistries.org/booklets.htm - WIGM
offers 2 books to help friends and family better
understand:
"But You Look Good" booklet
– explains to healthy
people what it's like to have a chronic illness and
how to be supportive.
“Not by Sight” booklet – helps Christians learn
how to minister to their loved one.
23. DISABILITY
TIPS
From a reader who was just approved
for disability on the first try--
"KEEP A JOURNAL- this has come in very
helpful
Get a letter from a co-worker who has noticed your
decline
Keep great medical records!!!!!!!
Follow the instructions for SSD to the
letter!
It is good if you have medical records from various
physicians, I had from Rheumotologist (3), Internist, Infectious Disease
physician (yes, they treat Chronic Fatigue and Fibro)
GET ON YOUR KNEES AND PRAY TO GOD!!
Visit the website of Scott Davis, Attorney for
other valuable information."
24. CHRONIC ILLNESS
& CHRISTIAN FAITH
From
Dom: A dear friend has been battling painful, life-threatening health
issues. He recommended this site to me, as he knows the author,
Doug, whose wife is extremely ill. Doug is a Christian philosopher,
writer, preacher and teacher. He has many interesting thoughts to share in
his blogs about how to "be there" for people who are
suffering.
25. MEN
WITH FIBROMYALGIA
Reader 1--
"Thanks for the heads-up!
Grabbing my sword and shield...LOL."
Reader 2--
"Wow! This is very powerful! I
have been having really bad flare ups lately and am so tired. Trying to explain
this to people and trying to have someone who understands is so so difficult.
Thanks for what you do. It is helpful to know that there are others
of us out there and we do not have to suffer in silence."
Reader 3--
"My tears confirm that this story is
very real for so many of us."
Reader 4--
"Thank you so much for this. I am
sending it out to all of my family and friends, and several of them work in the
medical field. I pray that they will forward it to their
higher-ups."
Reader 5--
"WOW! Something exactly like I
have been experiencing! I get spasms in my rib cage and HAVE to lie down
and put on my CPAP machine! This stuff is a mess! Thank you for
sharing."
Reader 6--
"Oh my gosh, that was a good
read. So so true unfortunately."
Reader 7--
"Thank you for sharing this, I didn’t notice your sentence before
reading this. And the whole time I was thinking it was a woman who wrote
it. WOW, is all I can say. And he puts it and explains it in such
PERFECT terms."
26. "CURE
UNKNOWN"
"Please read Cure
Unknown by Pam Weintraub to get the idea of why the FMS and CFS
diagnosis really scares me!!!!
I personally feel patients are
mislead by using CFS and FMS. It should be called
"neuroendocrine" - so lyme and coinfections are
included. The only drawback of
the Cure Unknown book is that she does not discuss alternative treatments."
27. ELECTROMAGNETIC
FIELDS
A reader asks this intriguing
question:
"I have had little dental work and
have next to no metals in my body. What about the effect of
electromagnetic impulses from so many electronic
devices all around us. Any theories about
that? I have an
extremely robust magnetic field and have been known to destroy watches,
clocks, and yes, I electrocuted a computer monitor twice! My trucker's
handle was Powder! (like the movie character). I wonder if that is part of the
problem? Has anyone ever checked to see if there
is a trait for electromagnetic hypersensitivity or
hyperactivity in FMS patients? The reason I'm asking this is because I
had a series of MRI's done a couple years back (on my head, checking for tumors)
and after that was done, I was pain free for weeks! "
From Dom: Wow. This is sure
interesting! I have a friend who can't wear a watch because they
stop. She was a "normal" (non-fibro) person. I do
believe all the electronic interference around us is affecting people's
health in general. I have never heard of as much sickness as there is now
- and with all the money we spend on healthh, doctors, prescriptions and
operations! This is actually Tip #64 in my
100 Tips for Coping with Fibromyalgia
and Insomnia www.fms-help.com/tips.htm (written many years ago) about
electromagnetic fields. When I think of all the cell
phone towers, WIFI, radio, TV waves, etc. with frequencies going through our
bodies, maybe this is why there is so much poor health these
days? Has anyone noticed
that you feel better when you are out in the country (or in a
wilderness area) away from electronic pollution? I have
had insomnia since age 16. I am now 57 (adequately medicated for sleep as
of a few years ago). However, when I was in my 30's, I took a
camping trip for a week in a remote area, and I actually slept on my
own. Maybe all these frequencies are affecting our brain waves!
Opinions, theories, experiences?? Write dombush@bellsouth.net.
28. DOM'S
UPDATE
What a strange 2 weeks! I
came down with a case of shingles, although I never had chicken
pox. It was surprisingly painful, almost like post-operative
pain. I discovered there had been many cases of shingles all around
me this past year with my music families (I am a piano
teacher). The doc says you can't "catch" shingles, but if you have
it, you can pass the chicken pox virus to babies, people going through chemo, or
those who have not been inoculated against
it.
I'm back to work now, although
with lingering nerve pain (post herpetic neuralgia). The doc says that PHN
can last for weeks, months or even years. Pain pills (Lortabs,
Ultram) help a little. Other ideas are tricyclic antidepressants or nerve
block shots, but I will see if I can ride this thing out.
I feel sorry for the
many elderly people who become afflicted with shingles. I was also
surprised to discover that a number of people I know got shingles for the first
time in their late teen years and some suffer recurring episodes in their
adulthood. Ugh!
Interestingly,
I didn't have to explain
shingles to anyone or apologize for it, unlike FMS/CFIDS! Almost everyone
I talked to either has already had it, or a member of their family did, or
a close friend, so they were instantly sympathetic and understanding. Now
that was a real change of pace for this fibromite! Well, there seems to be no end to
maladies that can affect the human frame, but we can look forward to our new
bodies in heaven!
Dominie
II Corinthians 1: 4 - "Who comforteth us in all our
tribulation, that we may be able to comfort them which are in any trouble, by
the comfort wherewith we ourselves are comforted of God."
Dominie's FMS/CFIDS Homepage www.fms-help.com is a Christian-based
website offering help and hope for Fibromyalgia and Chronic Fatigue Syndrome
sufferers and their families.
Return
to Dominie's FMS/CFIDS Home Page
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.
