A
compassionate, informative newsletter for people with Fibromyalgia (FMS),
Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), and Myalgic
Encephalomyelitis (ME).
TOPICS ARE IN PURPLE. READERS COMMENTS ARE IN BLACK. MY COMMENTS ARE IN TEAL.
Don't miss: #4,
6, 12 & 14
1. READERS
WRITE
"Your site www.fms-help.com has been a source of
wonderful information as well as a source of comfort that none of us are
alone in this battle."
"Love your informative
newsletter!"
"Thank you for all your hard
work and determination to get 'The Word Out' about
Fibromyalgia. It is an insidious disorder and knowledge is foremost the
first weapon in battling this horrid disease."
"I really appreciate your
site www.fms-help.com and
newsletters."
"Your website is
brilliant."
"I appreciate all the effort you put into
your great newsletter...keeping people informed!"
"I loved your
website!"
"Thank you for your
wonderful newsletter."
"I wanted to say thanks for the hard
work you put into your site."
"I was reading through your site tonight
- what a wealth of informatiion!"
"I just read a
letter from one of your readers [ www.fms-help.com/060108.htm, Topic
16] about Social Security Disability benefits payments changing and as she
mentioned becoming lower when she turns 65. I realized immediately that whoever
gave her that information made a mistake…so here is the information from the
Social Security web site under SSD. Here is the link http://www.ssa.gov/pubs/10153.html#2 . Below is the text reference.
When you reach full retirement
age--
If you are receiving Social Security
disability benefits, your disability benefits automatically convert to
retirement benefits, but the amount remains the same.
If you also receive a
reduced widow(er)’s benefit, be sure to contact Social Security when you reach
full retirement age so that we can make any necessary adjustment in your
benefits.
NOTE: For more
information about full retirement age, ask for Retirement Benefits (Publication
No. 05-10035).
3.
"CHRONIC FATIGUE SYNDROME" IS A BAD NAME FOR THIS ILLNESS
From Marly Silverman of
Pandora--
"Great article,
short and to the point. I am extremely pleased and grateful to Lenny for sharing his personal story with the readers
of the New York Times.com. It take great courage to say that one has
CFS/ME in such an open format."
Lenny, the author of
this article, developed CFS in 1990 after having mono.
4.
MISLEADING FIBROMYALGIA VIDEO
Reader
1--
"RE: Topic #25 at www.fms-help.com/060108.htm -
"THIS FIBROMYALGIA VIDEO IRRITATES ME!" It sounds like they are referring
to "primary fibromyalgia" with no co-conditions, which isn't very
common. Back when I was first diagnosed I remember it was possible for me
to do like this lady with FM is saying she does and I DID feel better. As
the years went on and the diagnoses multiplied it got harder and harder.
They should have specified. I'm going to try to find out where to write to
complain about the lack of the "whole picture" view on this piece."
Reader
2--
"I don't care to much
for those new FMS ads on tv. I think once again it
trivializes our illness. Did you catch the show
about it on the Discovery Channel? Again really not telling the
whole story about what most of us go through. Here is a link if you haven't seen it..you can watch the whole show
online at http://discoveryhealthcme.discovery.com/fibromyalgia/fibromyalgia.html -
I've yet really to see anything on tv or in the news that
justifys this illness competely. If lyrica is the
magic medicine, why doesn't my doctor offer it to me or to everyone who has
it. When in fact they don't, it has to many side
effects. Just like the big zanaflex news,
which turned out to be a flop also. How do we get
everyone to take this very seriously as it should be?"
5. POLIO
VACCINE SUGAR CUBES & FMS/CFIDS?
From an essential oils
newsletter--
BABY
BOOMERS GOT MORE THAN SUGAR
IN THOSE CAFETERIA
“CUBES!
By the
time the deadly truth was discovered in 1960, more than 98
million Americans had already been infected with Live Cancer
Virusesalong with their routine polio
vaccines. SV40 was the 40th virus found in rhesus monkey kidney
cells when these cells were used to make the polio vaccine. This virus
contaminated both the Inactivate Polio Vaccine (IPV) created by Dr.
Jonas Salk and the “Live” Polio Vaccine (OPV)
created by Dr. Albert Sabin.School children around the country
were given the vaccine via sugar cubes and hypodermic injections.
Because SV40 was not detected until five years into the program, no one was
aware that polio vaccine made in the 1950s could be contaminated. In 1961, the
virus was found to cause tumors in rodents (Eddy et al., 1961). That same year, the
federal government required that new stocks of polio vaccine be made free of
SV40. However, existing
polio vaccine stocks were not recalled and were used until
1963.
Interest in SV40 has increased in the last several years because this
virus was found in certain forms of cancer in humans such as mesotheliomas (rare
tumors located in the lungs), brain, and bone tumors. More recently, SV40
has also been found to be associated with some types of non-Hodgkin's
lymphoma. The dramatic increase in the Cancer Rate may be linked to Baby
Boomers’ grade school polio vaccinations.
(Carbone et al., 1994; Jasani et al., 2001). Shivapurkar et al., 2002;
Vilchez et al., 2002 Brown F, Lewis AM (eds): Simian virus 40 (SV40): A possible
human polyomavirus. Developments in
Biological StandardizationBasel, Karger,
1998;94.)
Sugar Cube Vaccine
May Be Hidden Culprit Behind Fibromyalgia
and CFIDS
According to Dr. William Wong,
member of the Sports Medicine Hall of Fame, many doctors now believe that
Chronic Fatigue Syndrome (CFIDS) and Fibromyalgia are linked to the contagious
Polio outbreaks of the 1950’s and ‘60’s OR to the Live Virus Sabin
vaccine received by tens of millions of children in the form of Sugar Cube and
injection therapies.
Viruses don’t really die, but are
always mutating and morphing into something different than their original
form. This genetic change in the cellular structure makes it almost
impossible to create a vaccine that will truly have long-term
protection. Instead, the Live virus, over time, changes into something
different as in the case of Polio morphing into Fibromyalgia and
CFIDs."
6. FIBRO
IS VITAMIN D DEFICIENCY?
From a
reader--
"VITAMIN D EPIDEMIC. ONE DOCTOR'S
REPORT BELIEVES VITAMIN D DEFICIENCY HAS BEEN MIS-DIAGNOISED AS
FIBROMYALGIA. WOULDN'T THAT BE SOMETHING AS MUCH AS WE'VE ALL BEEN
THROUGH. LET'S PRAY IT'S SOMETHING AS SIMPLE AS THAT."
It would be a miracle
if we could be cured that easily! Been discussing Vitamin D in recent
newsletters. Very interesting subject! You can do a search for
the topic at www.fms-help.com/newsletters.htm. Maybe with all the sunglasses,
sunscreen and staying indoors under artificial light, we have ruined
ourselves! Who knows? I had a dear friend many years ago who
developed fibro from not getting enough sun and from being under stress.
Here's what happened. She was in her 20's and divorced, working as a
secretary. She wanted to get a better paying job, so she took night
classes to study computer programming. Years later, she got her first
programming job. What she didn't know is that she would have to work 12 hour
days! She left her home when it was dark and returned when it was
dark. Within one year, she had disabling fibromyalgia, and to my
knowledge, she has not been able to hold a job since. I don't know if
it was the years of stress working as a secretary, being divorced, and
going to school at night, or if it was the programming job that finally did
her in. Also, maybe sitting in front of a computer screen too many hours a
day....(pineal gland and all that).....but then you think of people who live in
areas of the world where they have the "midnight sun" - 6 months of sun and 6
months of darkness. They don't all have fibro. Wonder about their
Vit. D levels too?!
And then today this was
posted on my message board!--
"They use a blood test [to determine Vit. D
levels]. I was involved in a clinical Trial for Chronic Pain/Fibromyalgia
and the Vitamin D deficiency connection. I am very much in chronic pain and my
Vitamin D levels are high! There was no evidence that Vitamin D was
prevalent among those with chronic pain and not. Over 50% of us had
normal to high levels and the other had normal to very low levels. So who
knows in regard to vitamin deficiencies??"
7. FIBRO
& FATIGUE CENTERS
From a
reader--
"My husband and I went to one of the
Fibro & Fatigue Center seminars. We were both impressed with their
program. With my background as an RN, it all makes a lot of sense to
me. My husband and I have both been suffering with increasing all over
pain and profound fatigue for about 8 years. We both have Lyme
Disease, and I have been diagnosed with Fibro. We both have appts on
Tues, and I am really excited, because I have spent a LOT of money
(all not covered by insurance) on doctors that didn't help me to feel
any better.
I will let you know how things turn out. At
the first visit, they draw 25 vials of blood, and I will have to wait
for the results of those tests. Hopefully, they will have some answers
when the results come back.
Yes, the Fibro and Fatigue Centers ARE
expensive. They don't accept any insurance, but they fill out the
proper insurance papers and the patient has to pay up front, and
submit the forms to the insurance company I believe the reason
most doctors don't accept insurance, is because the insurance
companies are telling doctors how to treat their patients, and
determining costs. Doctors can go broke accepting assignment from most
insurance companies, these days. If the patient sends in the forms, the
insurance companies will usually pay for labs, prescriptions (if that
is included in the coverage), IV infusions (if the med is covered by
insurance), and maybe injections. The office visit is not covered at
all, as far as I know."
Read more
comments from readers who have gone to the F&F Centers - search my
newsletter archives at www.fms-help.com/newsletters.htm.
8.
TAGAMET
From a
reader--
"I used to have paralyzing MCS -- couldn't go
into a mall to save my life. Way back in the early 90's, someone told me
to try Tagamet 3X per day, and it cleared up most of that mental
exhaustion / overstimulation / nearly crazy feeling I used to
get. It worked really fast for me- about one month. Anyway, tagamet
is usually used as an anti ulcer drug, and it can be bought over the counter now
as tagamet or cimetidine. I'm sure you get tired of all the "cures" you
hear of out there, and I would never presume to have one, but it did help me and
there were no side effects for me, so if you thought to try it, maybe it might
help."
I have heard of
this before, but does anyone have a theory why Tagamet would help?
Write dombush@bellsouth.net.
I
got this
reply from Anne--
"Sure on Tagamet - it's an
acid suppressant. The person must be an Overly Acidic Fibro like I
am. The drug reduces acid, letting the serous fluid thin down to more
normal. The brain and body get fed. Can also reduce discomfort of
acidity at night, so the person may be getting more deep, restorative
sleep. They can read all of www.FibroFix.com and learn how to beat
all the symptoms.
Yang's study is more than a year
old. Chinese name, but is in U.S. Was a co-author on this study
if I remember correctly. All the big phamas came out screaming
because those are honey-money products for them
.
But I also wondered if the
study was looking at effects rather than cause, Dominie.
If someone has very high serous fluid
acid levels - like we do with Overly Acidic Fibro - but you give them
proton pump inhibitors - stomach acid is reduced,
so digestion may not be complete > poor nutrition.
But if the problem is body-wide
over-acidity and you don't treat that, but treat stomach acid
instead - you could likely have degeneration of bone > more apt to
break.
Also, if they have FMS, fluid in ear
canal would also be too thick > poor balance > more apt to fall >
more apt to break.
Old people may get hip fractures
because old people fall over more than they fall down. Also
because the hip bone is already large and thin. And because falling
over puts a real hit from the side, and the hip
bone is the first thing hit.
When we had trouble with me taking TUMS
in high amounts for 5 years (got kidney stones), Dr Harris thought a
proton pump inhibitor might work as well. I was hopeful, too.
In my case it takes 10,000 of TUMS to keep my ph ok. That's a giant
bottle of the largest tablets, every week.
The first two or three days, it seemed
to work. Then it felt like my body was eating my bones.
Horrible feeling, body wide.
That's when we knew for sure that
stomach acid was not part of the problem, it was just the "saliva acid"
(Serous Fluid) was too acid. That's when I started
to tell other Fibros to be sure to
monitor saliva and drinking water pH. Feedback from them is how we
know that about 90% of Fibros are the Overly Acidic version.
My body can only maintain saliva pH at
4.5 on its own. You cannot sustain life at that level of acidity for
long. For a while I was in real trouble with nothing
that
worked well.
So, instead of TUMS, I use the alkali
liquid in drinking water. Enough to bring it up to 7.4 Works
and no problems. I had used the alkali liquid before, but it
was not as convenient as the TUMS. I was in
outside sales and that stuff is too caustic to carry around in a
vehicle. Now I mix it in water first and carry the water around with
me.
When I got an ulcerated esophagus, the
gastro doc wanted me to take Protonix, which I did, temporarily, until my
throat healed. But the burn through my throat
was from taking Aleve - not from stomach acid. So I switched to
topical Naproxen, discontinued the Protonix, and all is well.
My bone density test
is fine. Just shooting from
the hip; hope it
helps."
This is the article
about hip fractures being higher in people on antacid
meds--
"It doesn’t make
sense. Tagamet is an acid blocker or histamine -2 blocker (we
produce three types of histamine, most common H1 – sneezing, etc, H2 – histamine
in the stomach and gut, reducing the acid which is histamine2). I have an
illness that causes me to take H2 blockers and H1 blockers, and for the people
with my rare illness, this has never effected their or my ‘brain fog
issues’. If she got better after one month and was able to come off of it,
sounds like she had an ulcer that was showing up in different ways thru her
body. 4-6 weeks used to be the dose to clear up an ulcer. What it
could have done was heal the ulcer so that the person wasn’t so focused on
hurting ulcer (nauseated, stomach pain thru to the back, etc), eating better and
then when they calmed down they automatically reduced their stress level.
IMHO."
9. READER
DOING BETTER
This reader has battled
FMS/CFIDS in the past. Here is her update about what's helping her
now--
"Absolutely number one
is a relationship with God. I was just reading Job and how he never cursed
God during all of his tribulations. Job lost more than any of us. I
have made a conscious decision to learn what it is God is trying to
teach me through all this. There is a strong correlation between
our mind and body. Having a sense of peace and purpose in our
suffering is important and not leaning on our own understanding but
leaning on God. Second, I have to say that being on thyroid
medication is essential. If you have hypothyroidism symptoms you
have to have it treated and finding an open minded dr is
essential. My stomach has been a huge problem. I am now
on a yeast free diet for my candidiasis. My body
cannot heal itself if my digestion is impaired."
Scroll 1/3 down
the page to the section about recovery stories from
CFS.
11.
DISABILITY - DON'T WAIT TO APPLY FOR SSD IF YOU NEED
IT!
From a reader--
"I am a registered nurse.
I was a late bloomer and going back to school with some life experience and
becoming a RN was a dream fulfilled. Nursing was my passion, I was in my
element. Taking care of patients was a privilege I learned so much from
them. I was truly an advocate for them and still carry so many of them in
my heart. It was ripped from under me when I could no longer work.
I waited for three years before applying for SS benefits thinking I would get
better and go back to work. It never happened and because I waited I lost
out in the amount of benefits I would have received. I was at the
height of my career and still mourn my loss. [About filing for SSD], I was
stubborn had always worked for what I earned. The person who saw how drastically
my salary had dropped because I had to keep cutting down on my hours asked what
happened why such a drop in salary? And so the process began. As she looked at
the dates and decline in salary she was able to adjust so I would receive closer
to what I should..but still no where near what I should be getting. Because I
waited. I was awarded the first time and did not use a
lawyer."
12. GERD,
MENOPAUSE AND FMS
From a
reader--
"I have had fms now for 10 years and i am now
50 years old. It is so hard to be able to follow some
of the tips when you have severe acid reflux disease.
Actually mine is more of a motility problem, but still there is much
burning . It use to be really bad until Protonix came into the
picture, I have to be very careful what I put into my mouth. From food to
medications. Nothing is worth getting the digestive system all screwed up, even
if it makes the Fms pain better. I'd rather have pain then to burn from gastritis and
heartburn.
I started menopause during this past year i
am now at a point of missing periods and hot flashes. I
knew I would always dread this time in my life, because i am limited to what I
can do to relieve menopause symptoms. My dr. put me on clonodine, for hot
flashes and i have just developed high blood pressure. Just what we need another
pill. I have always had the determination to fight my
fibro no matter how hard it was, Pain wise , sometimes i wish Dr. Kevorkian
would have been around. But I had alot more stamina back in my early to
mid forties.
Now that I'm 50 and now with the menopause
and the instant weight gain of 15 pounds or so, I feel so
detached from life. I don't have the same hope i had earlier in all
this. I feel like the old me has gone somewhere and
I'm stuck in this body that has no desire to do anything, Most of the time
I just want to lay down, close my eyes. But I hate this as I feel i am
wasting my life away. But i can't find the energy to
do this anymore. Nothing i can think of to do gets me excited and this is what
worries me. Is this just all part of menopause , or getting older, or is
Fibro wearing me down?
I feel
pressured to have onmy happy face and do
things when I really don't want to, I have finally learned to say No and
not feel to badly about it. My husband and I can do groceries together and errands, but everything else he likes to do is
to much for a person with fms. I know alot of people
with fms have GERd or other digestive problems. Actually that is what
started first.GERD then a year later the fibro. I believe i got my
fibro from a cruise i went on in 1997. I
got a very bad virus on that trip, that lasted for weeks. It
was also a very stressful year [bereavement in family], so I think all combined
pushed me over the edge. I was never well again really after the
virus.
It's so tough having this illness
when so many people are so wiling to give there advice on what you should
do to feel better.(family and friends). I don't look sick, it's hard to believe I am
sick, I guess thats the biggest problem we all face. Although i
can look pretty bad when the pain is off the charts.
How do I cope with menopause and fms
together? I surely don't want to do 5 to 10 years of hot
flashes and other menopause symptoms."
I'm sure many fibromites can relate
to this reader's struggles. I know I can! If you have
suggestions or comments, write dombush@bellsouth.net.
13. DOM'S
SUPPORT GROUP
Need to talk
about fibro or CFS, or vent or ask a question? Visit my online support
group at http://health.groups.yahoo.com/group/dominie
- there are 300+ members so far.&nbssp; To avoid getting tons of emails
every day, sign up for WEB ONLY and then visit the group
when you have time.
14. DOM'S
UPDATE
Hope everyone is
doing fine! I am managing life these days trying to take better care of
myself and not push too hard (easy to say, hard to do....) Right
now, I am having a bit of a problem. I have long suspected that I have some
osteoarthritis in my right hand. Typing and playing the piano are the two
main things I do, so losing the function of my right hand is not an
option. I have begun in earnest to take various supplements that could
help. I have two knuckles that are stiff and swollen, and it sure
hurts to bend them. Using my computer mouse and playing the piano make it
much worse - almost like the Repetitive Stress Disorder that contributed to
my fibro in 1982 when I was a legal secretary www.fms-help.com/fibro.htm.
I feel like there's something stuck in one of the finger joints - maybe a bone
spur?...... not a good scenario for a piano teacher and church
musician.
I guess I can
expect some "slowing down" and "malfunctioning body parts" as I get older (now
56). I don't have medical insurance except for hospitalization, so don't
have coverage for doctor's visits, x-rays or blood tests. I am trying to
decide if it's worth about $500 out of pocket to invest in answering this
question as to what is wrong with my fingers. A fellow pianist told
me last week that she got a shot (quite painful) directly into one of her
arthritic finger joints and it helped. I think I will try managing it
myself for awhile and see what happens. Naproxen, ibuprofen, asprin, etc.
don't touch the pain, so I quit taking them. (I don't need anything else
for my liver to process, as I am already taking a bunch of meds and supplements
www.fms-help.com/what.htm.)
I have
ordered some essential oils for arthritis pain. Maybe that plus my
joint supplements will help. I think this could be from an injury
rather than osteoarthritis, because I have bumped those knuckles numerous times
over the years and could have chipped something.
Well, I will stop
whining and sign off for now, but if you have any suggestions, I'm all
ears! (hey....at least my ears don't hurt....they just
ring!!!) When I think all of the disasters that have occurred in the world recently - even the earthquake right near my family in China, I realize that I don't have any problems really....so I try to keep things in perspective.
P.S. If you can, please keep
correspondence as brief as possible. I stay inundated with email
and feel bad that I can't answer everyone....I have hundreds of emails
awaiting replies. THANKS SO MUCH FOR YOUR UNDERSTANDING! I do
read everything readers write to me, but can't always
respond.
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.
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE