DOM'S
NEWSLETTER
November 19,
2007
A compassionate,
informative newsletter for people with fibromyalgia (FMS), chronic fatigue
immune dysfunction syndrome (CFIDS) and myalgic encephalomyelitis
(M.E.)
Don't
miss:
#2 STRESS - a fibromite's #1 enemy
#6 FIBRO ON OPRAH - Dr. Jacob Teitelbaum talks with Dr.
Oz
#10 BLOWN FUSE CAUSES FMS/CFIDS - malfunctioning hypothalamus gland is the
culprit
#19 FIBRO PEN PALS - good idea
#20 DOM'S UPDATE - feeling well & Christmas
CD
1. READERS
WRITE
"Your website www.fms-help.com is very helpful and
provides relevant info and real life
stories of other fibromites!!!"
"I have been reading your newsletter now for
about going on 5-6 years and it does keep me sane - most of the
times - to know others are in the same boat as me."
"Thank you for spending so much time
and energy for us fibromites."
2. STRESS
CAUSED READER'S FIBRO CRASH
Reader
1--
"I wrote to you a week or so ago after we
returned from our overseas trip which I coped with remarkedly well, however
since being back I have crashed. I knew I had pushed myself for a month
while travelling but it was all an exciting adventure and I appeared to be
okay at the time. However, all the old symptoms are back including
temperature fluctuations, one moment I am burning hot and the next
freezing cold.. This week I have just had a suspicious mole removed from my arm
(could be a melanoma) which has put me under more stress. I truly believe
like yourself that stress and lack of sleep are the KEY instigators of
relapse for me. I feel so guilty taking sleep medication every night
and even then it sometimes doesn't work, prob because I don't take enough
for fear of dependence - interested to hear that you take a combination of
a few things, maybe I should try that. Anyway hope you have turned the corner
and continue to have some more good days."
Reader
2--
"Thank you for your Special Update www.fms-help.com/111407.htm.
You couldn't be more right. STRESS is ours and everyone
else's worst enemy, whatever form it takes."
3. VITAMIN
D DEFICIENCY & FIBRO
Reader
1--
"I am 61, had FMS symptoms since 1975, am now
getting some good results from treating severe Vit D Deficiency, probably
coming on for years. I moved to a Rain Forest in Alaska 24 yrs ago
where you get little sun. It was because of your website that I read
"Is it Fibromyalgia or Vitamin D Deficiency?" I can't
thank you enough."
Reader
2--
"I have found out that being severely
deficient in Vitamin D will cause excessive pain. I was wondering why my
pain was not quite as severe as it used to be. This past weekend I
didn't have mine because of giving them to my mother. From Friday
until yesterday my pain not significantly worse. I got my new vitamin D on
Monday and have been feeling better since yesterday. I was having
headaches (haven't had any for a long, long time) body aches, etc. Wanted to run
it by you since you may or may not know this. My dr. told me this at least
a year ago or more. How true that is so I am thanking God for it.
You may want to run this by your readers. When my mother was in the
hospital a couple of weeks ago they tested her for vitamin D deficiency.
Her dr. said it was so low it would not even register so there really is
something to this. She and I are on 5,000 i.u. daily, along with our
calcium and vitamin D."
4.
ANTIDEPRESSANTS & WEIGHT GAIN
"I was reading an article from a reader in
response to Lunesta and swelling. I don't take Lunesta but am on
Amitriptyline since September. I have noticed my feet hurt
and swell since then. I thought there was a connection but wasn't
sure. I have read that antidepressants cause weight gain
as well. Can you find out if any of the other fibromites have
the similar response to these medications. I have been on Gabapentin
for over a year and it has greatly helped my restless leg syndrome. I also
take 2 temazepam with the amittiptyline and Gabapentin. I want so
desperately to come off these drugs but instead it seems like at least once
or twice a year I have to increase them instead of decrease them because
of the terrible insomnia. - Shirley"
I have heard of
antidepressants causing weight gain. Actually, I have gained 8 lbs. in the
past 4 years. It happened suddenly - one week I gained 4 lbs. and nothing
I did could remove the weight. A few years later, I suddenly gained 4 more
lbs. and they are stuck to me like glue too! I always attributed it to my
age, hormones or eating too much, but it could be a side effect of meds
too. My "set-point" evidently changed in my brain and my body likes being
this weight, although I personally would like to lose 15 lbs. My husband
recently read an article that said researchers are finding it is okay to even be
25 lbs. "overweight" according to the height and weight charts.
Interestingly, we had just been talking about several overweight friends
who run circles around skinny folks - they have plenty of energy and a great
attitude towards life, while the miserable skinny people are always eating
celergy sticks and jogging. Who really knows?! I think a happy
attitude is probably the most important thing for health. There is so much
sorrow and sadness in our world that is unavoidable, and that pulls us down
too.
5. ACID
PROBLEM
Please respond
directly to Sue at sue.cato@verizon.net--
"I'd love to hear from Fibro Folks that deal with lots of
internal acid. I have it bodywide and it is grueling. It's
particularly frightening right now as it is dominating my right side face, head,
neck and jaw area. I feel like my brains are pickling. Does
anyone else deal with these enormous amount of acid? - Sue"
I wrote Sue with two suggestions - one is a
powder and the other is a sachet that you put in drinking water to reduce
acidity. Acid causes disease and pain. Unfortunately, most of what
we eat makes our pH acidic, except for vegetables. If you have ideas that
could help Sue, please write her directly.
6.
FIBROMYALGIA ON OPRAH
From a
reader--
Dr. Jacob Teitelbaum talks to Dr. Oz -
Here is a summary of Dr. Teitelbaum's protocol:
The SHIN
Treatment:
Sleep: It is
critical that you get eight hours of solid sleep a night, Dr. Teitelbaum says.
There are more than 25 natural and prescription therapies that
he says he uses on patients if they're having trouble falling asleep. Also,
taking a hot bath before bed and keeping your bedroom cool are tips Dr.
Teitelbaum recommends to his patients.
Hormones: Dr.
Teitelbaum says it's important to treat any hormonal deficiencies you may have.
"Pretty much everybody with this disease needs to try a bioidentical
thyroid hormone," he says. It may also be necessary to get treated with
thyroid hormones, adrenal and reproductive hormones, Dr. Teitelbaum says.
Infections and
immunity: Fibromyalgia can compromise the immune system, Dr. Teitelbaum
says. It's important to treat infections, especially conditions in which
yeast or fungal overgrowth is affecting your sinuses or colon,
he says.
Nutrition: Avoiding
sugar—except for dark chocolate—increasing your water intake,
eating a high protein and low carb diet and increasing
your salt intake are part of a nutritional plan that Dr. Teitelbaum
recommends to his patients. Also, restoring energy through walking, swimming and
yoga are ways to help in recovery. Dr. Teitelbaum says any physical activity
that releases muscles helps the pain associated with fibromyalgia go away.
7. CHRONIC RENAL
FAILURE & FMS
From a
reader--
"I have Chronic Renal Failure and my pain was
constantly seen by doctors as a renal problem. My FMS was diagnosed last spring
and made me realize my pain was not just hypochondria. I had a bout of severe
nerve
pain
one day last week and I truly believed it was an attack of FMS. I hurt so bad
that I knew I could not sit for 4 hours on dialysis. Even after taking my pain
meds, a dose of prednisone and a warm-hot shower the pain did not subside. So my
husband drove me to the ER. After my blood test results came back I found my
potassium was up to 7.3. The window for good potassium is 3.5 to 5.5.
Too high of a potassium level can cause a heart to fibulate or go into
an arrhythmia attack. Too low of potassium can also cause the same
problems which I found out in the later part of 2005. I wanted to let
you know this in case you have other readers with FMS and chronic renal failure who are on very strict
diets such as myself. Phosphorus, calcium and potassium fluctuate quite a bit
when you have renal problems. So when you have 2 or 3 conditions with the same
disorders be sure to check out all of them to find the true source of the
pain."
8. FINDING
AN FMS DOCTOR
9. NEED A
DOCTOR IN OREGON
"I really need to find a sympathetic
Rheumatologist in my area, to help win my case with Social Security
Disability. I don't have any health insurance, so it's very expensive
to try and find a dr by trial and error. I went to a so called "specialist" in
fm in Portand, and almost $1000 later found him to be unsympathetic,
uninformed, and just wanting to sell me very expensive supplements which of
course, did nothing!. I live between Salem and Eugene, OR, and even Portland OR
wouldn't be too far to go for a decent doctor. - Laurie"
10. BLOWN
FUSE CAUSES FMS/CFIDS
"CFS and FM are caused by hypothalamic
dysfunction. The hypothalamus is the body’s master gland, which is likened to
the main circuit in your home’s breaker box. The hypothalamus is
weakened by long term exposure to physical or emotional stress, or a “drop dead
flu”, which will cause it to “blow”. When the main fuse blows, all of the
systems regulated by the hypothalamus malfunction. These systems
include the glands (affecting the thyroid, adrenals, and sex hormones), the
autonomic system (which regulates body temperature, blood pressure, and the anti
diuretic hormone), and the sleep center."
11. SINUS
RINSE TO AVOID INFECTIONS
A reader told me about
NeilMed Sinus Rinse. You can find it at Wal-Mart or any drugstore. I've
been using this sinus rinse occasionally to avoid sinus infections, which used
to plague me 2-3 times a year. The system costs about $12, which is a
bargain if it keeps me out of the doctor's office, which isn't covered by my
insurance. Getting rid of bacteria and fungus gives our immune systems
less to deal with.
12. SOY
CAUSES PAIN
Beware of soy milk and
products. Many with fibro are allergic to soy. I have some soy issues
too. See my 100 tips for coping at www.fms-help.com/tips.htm.
13. CRUMMY
SLEEP
Crummy sleep will give
us a REALLY bad day. See www.fms-help.com/sleep.htm for all the things I've tried for sleep since
1982. My latest experiment is with some new sleep CD's from Immarama
called Insight. Will report more on them in a future newsletter.
Others I have used are Sounder Sleep and The Sleep
Solution.
14. FIBRO
& FATIGUE CENTERS
If anyone has been to
the new F&F centers springing up all over and would like to report on
your results, please write dombush@bellsouth.net.
15. DIET
SODAS
From a
reader--
"Aspartame is really bad for my
fibro."
16.
ROZEREM FOR SLEEP
From a
reader--
"I have trouble sleeping as well and my primary doctor put me on Rozerem
8mg. I have taken it for several weeks and now i only take it when
needed. Perhaps that might help this person [with lack of
sleep]."
See www.fms-help.com/sleep.htm for a list
of all the things I've tried for sleep since 1982 and how they worked for
me. We are all different, of course.
17. TOO LOUD, TOO BRIGHT, TOO
FAST, TOO TIGHT
18. THE HIGHLY SENSITIVE
PERSON
19. FIBRO PEN
PALS
"I have been thinking about something and it is just
like you knew it in the November special newsletter www.fms-help.com/11140.htm that you
sent out..."
One thing I do know is that we
fibromites need to stick together! People who don't have this
illness can't understand it - even doctors! I am
amazingly blessed because my husband - although healthy - totally
understands my FMS/CFIDS condition. Not all fibromites have this luxury,
so I hope my newsletter will help to affirm and validate FMS/CFIDS sufferers and
the strange things they go through." I
have had an unnecessarily tough week at work and as supportive as my husband and
family usually are, they don't "get" why this is so distressing to me, but I
guarantee that you and other people will understand how this is such a big
deal. I have been wishing that I had a penpal to talk to about
"stuff." I have a couple of friends who have mentioned that they
have FMS, but they seem uncomfortable in talking about it.
Besides, I need someone who I can email in the middle of the night and rant to
once in a while or can cry to. I also need someone to celebrate the big
things (that seem like little things to non-fibromites) with. I can't handle a
lot of penpals, but I could handle having one or two friends who I get to know
well, who will understand if they don't always hear back from me right away, and
who would love to have a friend to share the same things I mentioned with as
well. I wonder if there are others who have this same need out there. -
Sylvia"
20.
DOM'S UPDATE
I have had 3
wonderful periods of relief of major fibro/CFS symptoms since I was first
diagnosed in 1982. After 14 years of suffering, my first period of
"remission" was from 1996-2001 from using the same things I use now. Then
at age 47 my hormones shifted and this caused a major crash, return of pain,
fatigue, etc. Then a young man told me about an immune balancer, and
that worked like a miracle from 2001-2004. Then I was unfortunately
exposed to toxic mold for a year at my workplace, and this led to a state
of miserable debilitation for 2-1/2 years until June of 2007, when
my husband suggested that I go back back on the things I used in 1996,
as well as use the immune balancer. I felt wonderful for 4 months - like a
"normal" person - but then some emotional and mental stresses ganged up on
me from a number of sources at once. This caused a 3-week
crash. I was able to function, but with great misery. These stresses
finally resolved (more or less), and my sleep improved. I have been
feeling normal and very well again for the past 3-4 days, so I'm hoping to stay
this way for awhile! STRESS IS MY WORST ENEMY! I do not
handle pressure well anymore. I have had to curtailed as much
stress and overcommitment from my life as possible. I have to do this for
ME!
Fibro is such a
mystery. My latest theory - I agree with Dr. Jacob
Teitelbaum's conclusion - is that it is caused by a malfunctioning
hypothalamus (gland in the brain). I think the malfunction may be the work
of viruses which target that area when the immune system is unable to deal
with them. It's like a fuse blows in your brain from prolonged
stress. Mine blew at age 16, when the sleep disorder began. I was a
straight A student, 2 years ahead of my classmates in high school. I
graduated from UCLA a month after I turned 20. Then I went on to have
a terrible 18 year marriage with severe daily stress, compounded by working
at a law firm for a difficult boss and impossible deadlines. This led
to full blown, debilitating fibro at age 30. That was
in 1982.
Once
the hypothalamus becomes unregulated, everything goes downhill that is
controlled by that gland. It's strange, though, that
with people all over the world under severe stress (such as in war
conditions) not everyone automatically gets fibro, so there must be more to
it - like maybe a genetic predisposition. I have had my FMS/CFIDS
site at www.fms-help.com
since 1996. I have heard from people on every continent who have
fibro. They come from all ethnic backgrounds, lifestyles and dietary
habits (such as vegan). FMS/CFIDS affects not only women, but men www.fms-help.com/men.htm and even
teens and children www.fms-help.com/teens.htm.
A current list of my
meds and supplements is at www.fms-help.com/what.htm. I'm
grateful to be feeling well (normal) again and I plan to avoid
stress like the plague!
Well, that's all for
now. If you would like to order my Christmas CD
(with 20 beautiful Christmas carols I recorded using the amazing Roland KR107
digital piano), please write me at dombush@bellsouth.net for info.
Christmas is just around the corner, so order now because it will take 2-4 weeks
to get the CD.
May God bless you this
Thankgsiving as we give thanks to Him, the source of all of our blessings.
Whenever things are bad, I always remember that things could be
worse!
Faithfully
yours,
Dominie
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE
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.
