"Bear ye one another's
burdens and so fulfill the law of Christ." Galatians
October 19, 2007
informative newsletter for people with fibromyalgia (FMS), chronic fatigue
immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (M.E.) and other
TOPICS ARE IN PURPLE. MY COMMENTS ARE IN
LOUD, TOO BRIGHT, TOO FAST, TOO TIGHT - new book
by Sharon Heller
UPDATE - no fatigue or fog since June
"I cried reading your story www.fms-help.com/fibro.htm. I could
have written it. You wrote my story. I'm 35 yrs old
and have been plagued with so many problems for years and everyone thought it
was in my head."
"Thanks for all the
great work that you do."
"I appreciate your sharing such valuable
"If you did not suffer from fibro, you would
not have brought us hope. God has poured love into your
heart, and through this your light has shown in the darkness for many. And
if you can overcome this darkness, then so can I."
"Thank you so much for your hard work on the
"My problems are Fibro, Myofacial Pain
Syndrome, stenosis of the lower back, bulging discs and severe
arthritis, plus a lot of nerve pain. I have been suffering for
years. I am on heavey duty pain meds, but believe it or not, it helps with
the muscle and bone pain, but not at all with the nerve pain. My doctor
wanted me to try Lyrica. I was very leary about that because I have read
all about the side effects and other things that can happen with this
stuff. However, I promised my doctor that I would try it and she gave me a
weeks supply. The first day I took it I was very tired, didn't want to
move, and I felt very detached, if you know what I mean. That continued for two
days, and then all of the sudden, I noticed the nerve pain was almost
all gone!!!! So hopefully this is my answer to getting back to a
somewhat "normal" life for me. You know how chronic severe pain can make one so
depressed. I just wanted to tell everyone about my experience with the
Lyrica so far. Been taking it for two weeks now and feel pretty good
compared to how I was. I am still on my pain meds, but only have to take half of
the dose I was on."
"My Dr put me on Lyrica
about two weeks ago for Fibro. Seems to be helping Fibro pain quite a lot,
however over the weekend I suffered some awful symptoms in my throat. Went
to the Dr. yesterday, I guess I was having very severe heartburn. Dr.
prescribed Lyrica right before bed, his thought is that the Lyrica relaxed the
little flap in the stomach that keeps the stomach acid from coming up into the
esophagus and that is what caused the heartburn. I could barely
swallow! He has suggested that I take the Lyrica earlier in the day and
gave me some anti-acid meds for a few weeks! This is a vicious cycle that
I am getting so tired of!! Do you know of any of your readers that have
had similar symptoms with the heartburn after taking
3. "TOO LOUD, TOO BRIGHT, TOO FAST, TOO
recommendation from a reader--
"Too Loud, Too
Bright, Too Fast, Too Tight: What to Do if You are Sensory
Defensive in an Overstimulating World" by Sharon Heller. Her
hypothesis, which makes a lot of sense to me, is that the nervous system
of people with FMS/CFS is at the wrong "set point", whether they
were born that way or it developed after some sort of major stressor or
whatever. The more I learn about neuro stuff, I could see how both could
be possible. And how are bodies respond could be due to our genetic
background. I've heard that before, but the whole half of the book is
dedicated to re-setting it. This book was helpful for me because my
main symptom is pain and exercise does help me, but I know that isn't applicable
to my mom who is so fatigued that she can't exercise. Dr. Muhammud Yunus
has suggested that all these "syndromes" are actually the same thing on a long
contiuum of sensory disorders. Anyway the whole book
basically describes my whole life!!!! And I like that she gives
solutions on how to re-set the nervous
system. (I'm absolutely amazed when doctors say "Yep, sounds like
fibromyalgia" like that's an answer in and of itself!)"
"Please let me know if anyone has tried the
Exerciser 2000 Elite, it is advertised in the Arthritis today magazine,
Sept. 2007 issue - two pages from the back of the magazine. If it
works like it says, I'll buy it. - Sally"
LEAD-FREE LIPSTICK SAMPLES
"After sending out the email this morning
with the news of lead in lipsticks, I had to do some investigating. First
off, since my husband's main research for 30 years was in lead, I vetted the
research results past him. He verified that the levels of lead the
consumer's group has detected in the lipsticks are indeed a substantive amount
and capable of being quite harmful...especially since heavy metals build up in
bones and are released at later dates. So the article is dead on
tragic. However, that still leaves the question of replacing the lipstick
you own. To that end, I found the site for All Natural Cosmetics.
What's really great is that you can order sample lipsticks and glosses for about
$1 and try out the shades and product before committing. And these are
lead (and most other harmful ingredients) free. Thought I'd pass this
There seem to be so many signs and symptoms of B12 deficiency that are
similar to many of the symptoms ME/CFS/FMS patients like us suffer
from. In 1849 (157 yrs ago) an association
between Neuro-Psychiatric Disorders and Vitamin B12 Deficiency was first
described! 'Cobalamin deficiency must be suspected in all patients with
unexplained neuro-psychiatric symptoms or unexplained anaemia. Special attention
should be paid to patients at risk of developing cobalamin deficiency such as
elderly people, vegetarians, HIV-infected patients, patients with
gastrointestinal disease and patients with auto-immunity or a family history of
7. ST. JOHNS WORT FOR
From a reader--
"Just wanted to say that I started using St Johns Wort for depression and
it's been like a miracle for me...I noticed relief within first 48 hrs of
use...I'm also taking FLAX SEED OIL which has the omegas in it (incl. omega
3)...so that may be also helping... I use melatonin & 5htp for
sleep..doing better...not great but improved...I wont take the sleeping drugs
anymore.... (horrible side effects). This is a vicious and cruel
illness...very draining and difficult when other conditions are added
with it.... I live in Florida and am in early menopause so the hot flashes are
horrendous!!! cant take hormones due to history of blood clots and havent
found relief in an herb yet....thanks again! God bless! I'm so broke from
trying things..its crazy!!!"
Another reader with a cashectomy! I can
so relate to everything she said. For a list of things I tried for sleep, see
www.fms-help.com/sleep.htm. I am still trying to find something to get rid of the hot
flashes. The extreme heat and humidity here in Florida make this even more
of a problem. Have tried hormones, phytoestrogens and a number of natural
formulations, all to no avail. I am 55. Some have helped a
little, but not as much as I would like. Melatonin for sleep stopped
working for me when I turned 48. 5-HTP has never helped me. We are
all different. I am using a good Omega 3 product and that helps with
FIBROMYALGIA FRIENDS SUPPORT GROUP
9. SLEEP AND "BED DREAD" HELPED BY
"I too had bed dread - anxiety
about going to sleep because I knew I would be tossing and turning due to
Restless Leg and pain from Fibro. My homeopathic Doctor gave me
Aurum Metallicum 30 for the anxiety and it was amazing.
And Coffea Cruda 30 to help me sleep. I have slept like a
baby ever since. No side effects, no drowsiness the next day. I wake
up refreshed. For the RLS I still take Cuprum Metallicum 30 and it works
wonders with no side effects. I spent 10 years without restful, refreshing
sleep. I was a zombie. I've got my life back. A good night's
sleep is healing."
10. CHLORINE-FREE SWIMMING
"My rheumatologist Dr. has been
trying to get me into the same program for the last 5 years! Every time I visit
her the same conversations occur. I already know that I am allergic to the
chlorine from having taken my kids years ago for their indoor swim lessons at
the YMCA. The fumes alone bothered me. I can take short times in a hotel
pool. I don't know where you live but I did discover that the swimming
pools in Cali (per the hotel I stayed at) are no longer using
chlorine. They are using a different product that has no odor and is like
swimming in salt water. I had no reaction when I was on vacation and was able to
do short increments of exercise for the 10 days I was out there. Was told that
Arizona also is chlorine free. I'm in Chicago and when I got back home I called
everywhere about this and noone had heard of a chlorine free swimming
pool. I have finally after many years found I can tolerate stretching
exercises for about 20-30 minutes 3x week. Not consistently, I really have to
listen to my body. I have recently added 8 oz weights. Yes, 8oz tomato sauce
cans. Tried 16oz and it was too much. Only doing 10 reps of simple arm lifts. I
am seeing a physiatrist, physical medicine doc who told me to only do
8oz. I also, have not had any success with weight loss but on my
meds I used to take."
invested in a hot tub upon the advice of another friend with fibro. What a
disaster! Was allergic to the chemicals and I could never get the
water right chemically due to having well water where we were living. I
got infections after using the hot tub no matter how well-maintained I kept
it. Finally sold it and was grateful that it wasn't another
11. CORTEF HELPS CFIDS PATIENT
From a male
"I am doing well. I canít complain. The
best treatments for me are the low dose cortisol (Cortef 15 Ė 20 mg. /
day), and glyconutrients. I started taking the cortisol about a year and a half ago and it has
really helped with overall stamina. My lab tests showed my
adrenal function was only half of the low end of the normal
range, and I found a progressive doctor who would prescribe the
cortisol. No side effects at all."
EXCITOTOXINS CAUSE PAIN
"For me if I take
anything with Excitotoxins such as
capsules or the 40 plus aliases I'm in
fibro pain. Meds
can be notorious for hidden ingredients.
Go to the interview area
and listen to Dr. Blaylock
I also get his monthly
newsletter and the October issue
I have to read every
label on meds (full disclosure)
food. Eating out is out of the question.
I can't even find a
bread in the Health food store that I can
eat. My diet has
to be squeaky clean from known
just a smidgen puts me in terrible pain.
I only eat what I
prepare. It isn't easy but worth it.
The nutrionist that I
work with has become a good friend.
my medical problem she is helping other fibro suffers
eliminating free glutamate (excitotoxins)
with much success.
I also have to watch
anything that I use on my skin. Many
products have hydrolyzed
substances in them plus other
ingredients that I react
to in the form of pain.
So many people are
I hope that what I have
shared will help others."
"It would be nice if
the building and the way they do business reflect our
disease... for instance: 1) Lower all the lights..in the
entire building. The administrative staff will just have to get
used to it. Most fibros I know of (including myself) are very
sensitive to light. I recently invested in full spectrum light bulbs and
they help, 2) Have sound-absorbing walls due to extreme sensitivity to
sound, 3) Have like 30 masseuse (sp?) on hand to give massages
whenever needed , 4) Don't act like they know everything about FMS if
they don't, 5) Don't tell us to simply relax, 6) Teach the administrative
people to be sensitive and kind to our condition. Make them understand
that we are all in pain or severely fatigued and basically just don't feel
good ever. If we are crabby when we come in, tell them not take offense,
that we just don't feel good. Tell them not to ask (even though
it's the polite thing nowadays) "So how are you today??" with a chipper
smile on their faces. If we are there because of FMS or CFS, we are
NOT feeling good. Question already answered. 7)
Schedule enough time to fully evaluate. 10 minutes, like a regular doctor
appointment is nowadays, is not nearly enough time
to describe all our numerous, seemingly random symptoms, 8) Most
of us are fatigued, so have plenty of seating, 9) Play soft, calming music,
not a blaring radio (the sensitivity to sound thing), 10) It would be nice if
maybe they had lots of heating pads available in the waiting
MARITAL FIGHTING AND HEALTH
Who needs more
stress in marriage?! For ladies only, see my article "Marital Harmony" at
www.fms-help.com/marriage.htm. It was originally a booklet, now free
AND FREE RADICALS
"If you eat a lot of junk food and sugar,
donít sleep enough, are stressed, and are exposed to a lot of environmental
pollution, your body could easily become overwhelmed by free radicals, and be
unable to neutralize them on its own."
The part about
not sleeping enough, being stressed and exposed to environmental pollution
struck a chord with me. No wonder I feel better since June 5 when I began
using an unusually potent antioxidant. For info, write email@example.com.
ANOTHER FIBRO SUPPORT GROUP
17. NEW CANCER DRUGS
COULD HELP AUTOIMMUNE PROBLEMS
"Received a newsletter from Revolution Health that included
this article about a possible treatment for overactive immune systems, as most
of us that have FMS also suffer from other autoimmune disorders as
well. I thought it was interesting."
"I thought I would pass on this information to you about
clinical trials starting for a new device aimed at easing the pain
associated with FMS
. I am from Ottawa and that is where they are
starting the trial. The plans are to extend the trial over the next year
with the hope of getting FDA approval. You can read more about the trial
and company here. http://www.fralex.com
19. WHY DON'T
PAINKILLERS WORK FOR PEOPLE WITH FIBROMYALGIA
However, I still
have the sleep disorder (since age 16, so it's been almost 40 years now) that I
manage with meds www.fms-help.com/sleep.htm.
has ruined me occupationally. I am not dependable because my sleep is
undependable. I'm glad I can teach music in the afternoons and
evenings at the School of Music, because I don't do mornings. In the
mornings, if I'm not sleeping, I write the newsletter and webmaster my
FMS/CFIDS site at www.fms-help.com. With a sleep disorder, it's hard to
plan anything for the next day, not knowing if you are going to sleep or
not. I try to never schedule a morning
today was my day off, so I decided to treat myself to something different!
(I'm a workaholic!) So I went to the Southern Women's Show at the
convention center about 40 miles from our home. There were hundreds of
booths with demonstrations of everything from cooking, to health care, to
pianos. (Of course the piano exhibits were my favorites!) I walked
around for several hours - saw several people I knew - then drove home in
heavy rain and traffic. For those of you who have been following my
updates for the past several years www.fms-help.com/newsletters.htm,
you know what an incredible feat this was for me compared to how I have
been. I thank God for the new things I'm taking that make this level of
functioning possible for me now. If you want info, please write me firstname.lastname@example.org.
Maybe they will help you too. I wish all of my readers felt as good as I
do now! I have spent sooo many years in misery and suffering.
It feels good to feel good again!
continue writing this newsletter as I have for the past 11 years, because God
has given me this work to do, at least for now. I can never forget the
people who suffer from this debilitating illness who need not only information,
but also inspiration and comfort from
someone who understands! I was diagnosed in 1982 www.fms-help.com/fibro.htm,
so I am "celebrating" 25 years of experience with this disorder.
(Ugh!) But God must have had a reason for letting me endure this.
Actually, there are many worse things a person can go through!
Here's a short article from www.fms-help.com/marriage.htm --
and I can say this certainly is true in my case.
TOLD BY A PREACHER'S WIFE
There was a woman who complained to the Lord that her
burden was heavier than anyone elses and that she simply could not bear it any
longer. So the Lord told her to go into the room where He had all the burdens
being carried by other members of her congregation. He said she could spend the
afternoon trying on other peopleís burdens and trade hers in for one she could
handle more easily.
The woman was overjoyed and quickly discarded her
burden. She decided to try on the smallest one there. She picked it up, but was
surprised at how heavy it was for its size! She knew she couldnít carry it
around for very long, so she looked for another burden that might be lighter.
She spotted one in the corner that might work out, but much to her amazement, it
itched and prickled very badly! She had to take that one off too.
All afternoon the woman tried on various burdens
unsuccessfully. Finally, she found one she felt she could live with! The woman
said happily, "Lord, Iím ready to go now. I found a burden I think I can
manage." "Good," said the Lord, "Thatís the same one you came in
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.