*** DOMINIE'S
NEWSLETTER ***
MAY 2005
PAGE 1
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.
I AM POSTING THIS NEWSLETTER EARLY (END OF APRIL) HOPING
THAT EVERYONE WILL KNOW ABOUT AND PARTICIPATE IN THE MILLION LETTER CAMPAIGN FOR FIBROMYALGIA AWARENESS ON MAY
1, 2005 - www.fms-help.com/letter.htm YOUR LETTER IS IMPORTANT! WE WILL SPEAK AS ONE VOICE!!
SEE TOPIC #2 BELOW....
Scroll down to read
Topics 1-10:
1. LETTERS
FROM READERS
2. COMMENTS ON THE MILLION LETTER CAMPAIGN - MAY 1,
2005
3. CYMBALTA
(revisited)
4. COLD
SORES (revisited)
5. MAGNETS
HELP PAIN
6. PROVIGIL FOR FATIGUE
7. SLEEP
APNEA
8. FLORIDA
LAWYER WINNING DISABILITY CASES
9. FLU
SHOTS & FMS/CFIDS (revisited)
10. FREE
HEALTH BOOKS
11. MYSTERY
ILLNESS CASTING CALL
12. NO MORE
FIBRO AFTER COCCYX REMOVAL
13. CFIDS
LINKED TO AIDS
14. LYRICA - NEW DRUG FOR FMS
15. PANIC
ATTACKS
16.
MILNACIPRAN FOR FMS
17. TV
SHOWS PORTRAYING FIBROMYALGIA NEGATIVELY
18. MONEY
DIVERTED FROM CFIDS RESEARCH
19. DR.
WHITCOMB
20. LYME
DISEASE OR FMS/CFIDS?
21. MYALGIC
ENCEPHALOMYELITIS
22.
FMS IS AUTONOMIC NERVOUS SYSTEM DYSFUNCTION
23. BREAST
REDUCTION TO HELP PAIN
24.
SPIRITUAL UPLIFT CORNER
25.
DOMINIE'S PERSONAL UPDATE
1. LETTERS
FROM READERS
"I am glad to have access to your site
www.fms-help.com Thank you
for all the work you put into it; I
personally don't know how on earth you do
it! What a commitment!"
"I love your 100 tips www.fms-help.com/tips.htm - I often
refer people to them. This is such a 'designer' disease with a 'designer'
treatment plan for us all - one of the problems I suppose."
"I am in a lot of pain, I know the
reason for my flare up and I need to go apply for social security, I
am still working, but can work from home, but the stress is getting to me, it is
unreal, in the last 2 months things have gotten much worse and I can barely
get out of bed in time to crawl to my computer and turn it on, I have to go
lay down, now that the sun is out, I am going to start going out on my deck
and sitting in the sun, about 10 minutes each hour, maybe this will help.
Thanks so much for your website www.fms-help.com and all your info. I
really needed this, have been suffering for about 9 yrs---when I eat
potatoes or bread, I nearly go under, I have leaky gut syndrome,
tomatoes don't really bother me, but I have leaky gut from taking so many
antibiotics and birth control pills and other meds--chronic pill taking has
eaten a hole in the lining of the gut."
"My Physician Assistant told me she goes to
your site often www.fms-help.com and
thinks it is great. You're doing a beautiful job, and I thank you so much
for all your great devotion, effort, and caring!"
"I was dx'd 11 yrs ago and until last June
took all the narcotics and muscle relaxers, antidepressants etc. until I finally
had a toxic reaction to the combination of benzodiazapams and was found
unconscious by my husband in our garage after several hours of being there. I
had an enormous hematoma on my forehead and raccoon eyes from the hairline skull
fracture. I then decided to detox and try something new. Anything
had to be better than 10 yrs of being a zombie. It took about 2-3 weeks to
detox and I began reading more and began natural supplements. Currently I take
malic acid, MSM, hyaluronic acid (which I found to be fabulous but expensive). I
drink herbal tea to sleep at night that seems to help at times and the only rx
is Ultracet. For now I think I have most of it under control if you can
call it that. I still have unbelieveable fatigue and headaches, but not as
frequently as when I was taking the Vicodin." [NOTE FROM
DOMINIE: See my 100 Tips for Coping with Fibromyalgia and Insomnia at
www.fms-help.com/tips.htm]
2. REPORT ON
THE MILLION LETTER CAMPAIGN - MAY 1, 2005
On May 1, 2005, thousands of FMS/CFIDS
sufferers and their family members will mail their letters describing their
battle with this illness to 5 addresses listed at www.fms-help.com/letter.htm
This is an effort to increase FMS/CFIDS awareness in our society. Below
are some comments about the campaign--
This was a beautiful email
to Pattie, founder of the Million Letter
Campaign:
"That's a big task you're undertaking--one
day years from now when fibro has a cure, people will read about a woman named
Pattie who refused to settle with half a
life. You are a true
pioneer for progress in these painful illnesses."
From an MLC
volunteer:
"The media are the ones who are making a joke
out of our pain so I think it will make a difference. I have really
connected with some people who understand and together we WILL make a
difference. I will be sending my letters. They are stamped and ready to
go."
From another MLC
volunteer--
"A lot of things are slow at the start
but when people realize we are not going away then they will start to
listen. We have to remember: The squeaky wheel
is the one that gets the oil. Come on
guys....SQUEAK!"
Response from another
volunteer--
"Squeak....squeak.....all diseases had to
start the same way when the people were trying to get recognition and
research. We don't have to try and make huge steps, just do as Mother
Teresa said when she commented: "You
can not do great things on this earth. Only small things with great
love." None of us are in the position to do as stars have
done and drop a million or so dollars into research and say "Here do more
research on this!" as they have done for ALS, Parkinson's Disease and
AIDS. But...we can do small things with great love to raise awareness for
a disease that has tried to take over our lives. Inch by inch, breath by
breath, prayer by prayer, letter by letter, we can make our voices heard
together and those squeaks can be become a mighty roar...TOGETHER. I'm so
glad we have each other."
Another volunteer found this
online (how about using this for FMS/CFIDS
awareness!)--
Have Your Say in
May
What presses your buttons? If you have a
debatable Hot Topic -- whether it's today's news, an everyday
occurrence
or something you've been thinking about for a long time and
feel really
passionate about -- let us know. Please describe it and
send it along with
your contact info and photo of yourself to:
Have Your Say in May
The
View
320 West 66th Street
New York, NY 10023"
Here is the
link:
http://abc.go.com/daytime/theview/solicitations.html
3.
CYMBALTA (revisited)
"I have been taking 60 mg of Cymbalta each morning for a week
now. No adverse reactions, no side-effects. Next
week I will start taking 60 mg twice per day. We will see how that
goes."
"I would like to respond to the message about Cymbalta. I have
had CFIDS/fibro most
of my life (age 60) and have tried almost every
antidepressant. Three weeks ago my doctor
suggested I get off Paxil because I
have taken it for so long and I am not seeing the
results that we would like
to see. I came off the Paxil slowly and started the Cymbalta (30mg)
and I am
very pleased with my results. The Paxil was only addressing one Serotonin
Reuptake
System whereas the Cymbalta addresses 2 and thus helps with
pain. There have been studies in
Cifids/Fibro patients to show this. Me
included. I have more energy, am eating fine ,have less pain and an improvement
in my migraines, but my sleep cycle is off and I need to recycle myself from day
to night again--this happens often with me and my son who has Fibro. Your person
who wrote about Cymbalta didn't say if she had stopped another antidepressant
nor did she state the amount of Cymbalta she was taking.
We all react differently to
meds. I have seen a good change with the Cymbalta
and it is all my doctor told me it would be. We must remember that with
antidepressants some people take 6-8 weeks to adjust. I was fortunate and felt
relief in a couple weeks."
"I took Cymbalta from October until January. I never did
well on it. I didn't sleep, and had more anxiety, then began
having headaches. My blood pressure went up from its normal
110/70 to 136/92. That was when I called my doctor and got off of
it. I don't think it's the wonder drug they're trying to say it is."
"My doctor switched me to Cymbalta about 4 months ago because
I was not getting the relief from muscle aches that I had been while taking
Effexor. I was sleeping ok and not having too much in the way of Fibrofog, but
the aches and pains were making me crazy. Within 2 weeks of being on the
Cymbalta almost all of those disappeared and have not come back since.
I've only had one fibrofog day and I've found for the most part I've been
sleeping much better - barring cat, dog and pig interruptions
during the night."
"I was diagnosed with fibro in 2000....have had great success
with Cymbalta since beginning treatment 3 months ago. The initial dose was
too high; I could not sleep, and was horribly nauseated!
We reduced the dosage to 30 mg / day taken after breakfast with one
Prevacid.....Since that time, although I occasionally don't sleep some nights
(which occurs due to fibro, and prior to the Cymbalta, anyway) I have much less
pain, particularly the deep achy pain in hips and knees; I also have much more
energy. Prior to Cymbalta, I had been requiring 3-4 hour naps every day at
the very least; or 4-5 out of 7 days in bed! Now I can stop to rest
every 1/2 hour or so while doing laundry, cooking, etc., on most days, and
require more lengthy periods of rest only when muscle relaxers are necessitated
due to muscle spasms or knots - probably from doing more activity than I used to
be able to do. I have even been able to start slowly with Pilates
exercises again (5 minutes - more results in horrible achy pain late
at night). I am still not up to being able to work (although SSA
thinks I should be able to) but I have part of my life back! It's
been a great help to me."
"I had horrible nightmares with Cymbalta and
they didn't start until they upped my dosage from the minimum. There was
no relief from the pain while on Cymbalta. The only plus was that I didn't
gain more weight while taking Cymbalta."
"I read the article where the person had so many terrible
things happen to her while taking Cymbalta. I have been taking Cymbalta for 2
years now. I was on a research study for over a year before it was
approved by the FDA. I will say that the first week or two I did not feel
like eating much, but that changed after taking it for a while. The best
thing Cymbalta did for me was to ease my depression. I
was very depressed and it has helped me greatly with getting through each
day. No side effects as I know of."
"My doctor put me on Cymbalta for CFS. In general it has helped my
energy levels with few side effects beyond slightly increased tremors
(shakes) and some hallucinogenic dreams. It is not a drug
I would like to be on, but nothing else was helping at all."
"I have been on 60 mg Cymbalta for my fibro symptoms for 5 months, after an
initial rocky start and some dosage adjustments I now seem to be doing
quite well on it, (knock on wood). :-) I have had bad reactions to other
antidepressants in the past so know how badly that can make you feel. For the
first time in 7 years I've been able to go back to work part-time, I'm sleeping
better and pain is minimal. I pray every day that it continues."
"I've been taking 60 mgs. of Cymbalta daily and it has done
wonders both for my depression and some of my pain! I've had no
side effects whatsoever. I think it's a good thing, at least it's helping
me."
"I have been taking Cymbalta for four months now. Along
with FMS/CFS I have Peripheral Neuropathy. My feet and hands would burn
like electrical wires were hooked up to them. I had been using Actiq for
when it was the worst, but this was too expensive. My Doctor decided to
switch my antidepressant from Effexor to Cymbalta. The first couple of
weeks it did make me more tired than usual. I needed a nap in the daytime
until I became used to it. I lost weight the first month, but that didn't
last long. :o( The amazing thing for me is that I have not had ANY
problems with Peripheral Neuropathy since going on it. In the beginning
there was a drastic change in my depression too. That seems to have
leveled off. So far I feel that Cymbalta has been a very
positive experience for me."
"Another news station did a report of FMS headlining Cymbalta
as a mircle treatment. You can see the report at
www.wjxt.com and use the Health link."
"I took only one Cymbalta pill and was
nauseous for days. I stopped after one pill."
"I started going to a new doctor for my Fibromyalgia and Depression on
January 6, 2005 because my previous doctor was being a real jerk and I would
leave his office every visit feeling worse and in tears. Anyway, I really like
my new Doc, she is very supportive and caring. She put me on Cymbalta on my
first visit to her at 30mg. Then a few visits laters (which was a matter of
weeks) she upped my dose to 60 mg. After taking Cymbalta for about 3
weeks, I noticed my right eye becoming more blurry than usual (I wear contacts).
Then all of a sudden about a week later, I had a very blurry gray area accross
half of my eye and I began seeing flashes of light like lightening strikes
accross my eye. Well, I already new that this was a sign of Retinal Detachment.
So I made an appointment with my eye doctor and by the end of the day
(after seeing a retinal specialist) I was told I did indeed have Retinal
Detachment. I went into emergency surgery on February 23, 2005. I also had
to have a laser repair on my left eye because it was also weakening. I had just
had a full eye exam and new contacts prescribed for me in August of 2004 and no
problems were seen at that time. I started doing some research and found
that Retinal Detachment is indeed a side effect of Cymbalta, I
actually found 5 pages of side effects and I also came accross a message board
where a woman had taken Cymbalta for 3 weeks and developed a Retinal Detachment
with no prior eye history problems. Dominie, this side effect was not
listed on the printout my pharmasist gave me. Only blurred vision. Over a month
later, I am still recovering from the surgery, it is a slow process because of
the gas that is placed in the eye for repair. This is something that I did not
need on top of my Fibro problems. I am weaning myself off the Cymbalta right now
because I could not get in to see my doctor until April 18, 2005. I am not
feeling well because of it, but I cannot have this happen to me again, vision is
more important to me than a little 'comfort'."
"I also took Cymbalta and had lots of adverse
reactions. I also was tired ALL the time, had horrible headaches,
my heart felt like it was being shocked and my whole body was tingly and numb..
from the bottoms of my feet to the tip of my head. I was extremely dizzy
and found it impossible to do any of my daily activities. I had severe
stomach pain to the point the doctor thought I had gallstones and had me go
through numerous tests to prove otherwise. It was horrible! I have
now been changed to Lexapro and LOVE it! No side effects,
no sleepiness and it works!"
[NOTE FROM DOMINIE: I began taking
1/4 tablet of Lexapro last month to help with unrelenting depression caused
by the emotional distress and physical depletion I experienced during my
father's illness and death www.fms-help.com/eulogy.htm. My
nerves were shot, and I was grieving so intensely that it was affecting my
health. I can say that Lexapro has helped me, because I am not crying
every day anymore. However, even at this low dose, I have some
unpleasant dreams on Lexapro, so plan to discontinue it at some point.
Each of us responds differently to medications....what works for one may not
work for another. That's what is so tricky about treating FMS/CFIDS.
No wonder doctors are confused by us! When trying a new med, I always take
just a tiny dose to see what might happen, since I have had many bad experiences
with meds, particularly those prescribed for sleep--so I am always
cautious. Remember that your doctor is your CONSULTANT about your
health. It's up to YOU to make decisions because you know your body better
than anyone else does! If I had listened to doctors since 1982 and taken
the dosages of what they had prescribed for me, I would be in a mental
hospital (or cemetary) by now. For instance, see my sleep page at www.fms-help.com/sleep.htm I
have been writing a newsletter since 1996 so we can share our experiences. You
can find current and back issues on my site at www.fms-help.com The
best way to utilize this huge volume of information is
to use the SEARCH link on my NEWSLETTER PAGE at www.fms-help.com/newsletters.htm
I am putting more back issues online so everyone can access this valuable
store of information.]
4. COLD
SORES
From a reader--
"For
cold sores, someone recently gave me advice that has worked like
a
miracle!! First, I get one every time I visit the dentist, which is
often
anymore. There are two ways of doing it: both ways involve
L-Lysine
tablets (amino acid) At the first TINGLE, take 1000 mg. Of L-Lysine
and take it again the next
two days, twice the first day, once the second and
third day. I never get
one anymore....my friend hasn't had one in 12
years since doing this!
If you don't get any tingle or warnings, at the first
sign of that bugger,
start taking the L-Lysine! The cold
sore seems to go away before your
eyes (well, almost...)"
[NOTE FROM
DOMINIE: I've been using hand sanitizing gel on the places where I usually
get cold sores on my face. I used to get huge cold sores every 3
months. I've only had 1 tiny one in the past 9 months since I began doing
this. I use Germ-X from Walmart.]
5. MAGNETS HELP PAIN
From a reader--
"The magnetic topper is great and I got mine from a company
that uses NASA
data....uo-oh - the name drops right out of my head - and I
was rady to give
you the answer. I'll have to take a look at the
tag. I also get their
magnets to place all over the body "like
bandaids) - the reason they are so
great is that these magnets are designed
in a circle - the magnetic healing
never stops - like the "poles" do - the
magnetic energy has to break at the
end of the poles and then start on the
next pole...with these, the energy is
continuous....they are
wonderful...."
[NOTE FROM DOMINIE: See my 100 Tips for
Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm
- I discuss magnetics there. I love my magnetic mattress topper. I
also used patch magnets many years ago on my shoulders when my FMS was at its
worst and they helped the pain.]
6. PROVIGIL FOR
FATIGUE
Comments from a reader--
"PROVIGIL is what I am asking my doc for this week. It
has made a huge
difference in the CFS for several people I am in touch
with. The USAF is
using it on their soldiers for combat
fatigue....without a bunch of side
effects. It is used for narcolepsy, which
I have now."
From another reader--
"I was on it. My pain dr placed me on it and my Rheumatoid dr.
took me off it because of EBV and MONO."
[NOTE FROM DOMINIE: If anyone has tried
Provigil and wants to share their experience, please email me at
dombush@bellsouth.net
]
7. SLEEP
APNEA
From a reader--
"New information shows that the reduction in oxygen from sleep
apnea leads to excess uric acid generation which triggers an immune system
response. Repetition of this sequence of events over a long period of time leads
to autoimmune disease. If you have an autoimmune disease, make sure that you
don't have sleep apnea. If you have sleep apnea, get rid of it! Besides
autoimmune disease, it's other long term effects can be life threatening!"
8. FLORIDA LAWYER
WINNING DISABILITY CASES
From a reader--
"I just got off the phone with a lawyer from FL. They win
FMS/CFS cases all the time. And anyone that was injured in an accident and
developed FMS, they also have been winning those cases. It is important that you
refer anyone that lives in FL to this lawyer. This is the contact information in
case you want to check him out for yourself:
Luis R. Gracia, Esquire
LRG/tme
Rue and
Ziffra, P.A
632 Dunlawton Ave.
Port
Orange,FL32117
(800)526-4711
He told me there is clinical proof (scientific evidence) that
FMS can be caused by trauma but your doctor needs to proof it. I also asked him
about the Frey laws and he also cleared some of that up for me. It is based on
Supreme Court only! Also there is a difference between SSI and SSD. SSI is
more like being on Welfare. SSD is not!"
9. FLU SHOTS
(revisited)
From a reader--
"I read the letter from the
gentleman who had a swine flu shot in 1977. I also had
the shot in 1977. Within the next 5 years, I started to develop the
symptoms of FMS/CFS and also became allergic to sulfa drugs. My FMS/CFS
was in full swing by 1992-3. Since that time, I also developed an allergy
to penicillin and codeine/opiate derivatives. Just a note about this to
add to your database. Since that swine flu shot, I have never had another
flu shot because I've always worried that it did more harm than
good."
10. FREE HEALTH
BOOKS
The CF-Alliance asked me to share this
information--
"Knowledge is power." The CF-Alliance believes
in
empowering the chronically ill patient with knowledge
and
information in order to make the most beneficial
personal health
decisions. On Monday, June 6, 2005,
the CF-Alliance website will be
having another
'Members-Only Free Book Giveaway'.
There will
be over 400 books given away worldwide!
All books are new and
health-related.
On June 6, 2005, the free health books will be
listed
on our website
(
http://groups.yahoo.com/group/CFAlliance).
You
MUST be a CF-Alliance website member to
participate.
Books are given
on a first come, first serve basis.
Only one book may be received per
person/address.
Books will be mailed free of charge
worldwide.
For more info:
http://cf-alliance.tripod.com/id5.htmlEmail:
cf_alliance@yahoo.comPlease mail
book donations to: CFA, PO Box 9204,
Bardonia NY 10954 USA