DOM'S
NEWSLETTER
July 8,
2008
A compassionate and informative newsletter for people
with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome
(CFIDS), and Myalgic Encephalomyelitis (ME).
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."
TOPICS IN PURPLE. READERS COMMENTS IN BLACK.
MY COMMENTS IN
TEAL.
Don't miss: #2,
7, 10, 15, 22, 24, 28 & 31 (or maybe I should just say--check out ALL
the fascinating topics below!)
1. READERS
WRITE
"It was so heartwarming to
find your information on the website www.fms-help.com."
"WOW...WOW.....WOW. I just took
alot of time to read through your website. It sounds as if you are
telling my current life
story!!!"
"Your site was a beacon of
light just as I was giving up hope of ever living a normal life
again."
"Thank you so much for your site and
trying so hard to help all of us out here."
"I love your website and all
the information is very helpful!"
"I really enjoy your site and find the
information in it to be extremely valuable."
"Everything you talk about makes
sense to me and I am so grateful that you have put your information on
the website."
"I am an avid reader of your newsletters and
website."
"Thanks for being a gateway to keep us all apprised of what is going on in
fibro-world. It has been a constant source of
encouragement and help to me over the last 10 years."
"You're an intelligent Type
A. It's what forced you to persevere when you
could have given up."
"Re: An Emergency Marriage Manual
www.fms-help.com/marriage.htm - I've never browsed (for
pleasure) a website that actually was able to feed me advice about exactly
what I was looking for. Learning how to deal specifically with the
ups and downs of relationships is hard, and just wanted to
say thank you for expressing yourself and your wisdom on the
net."
"I have been reading your website
and loving it. Thanks for the helpful
information! You make me feel
normal!"
"I believe your site www.fms-help.com has more worth than most physicians could even hope to offer."
"Thank you so much for your website. It has helped
out greatly."
2. AN
OVERWORKED AMYGDALA?
From a
reader--
"Ashok Gupta and Dr. Michael Johnson
[reported on in previous newsletters at www.fms-help.com/newsletters.htm ] are
saying the same thing - an overworked amygdala. This may
be the root of my problem. I think I have been
scared or nervous most of my life since the age of six.
Won't go into the details of why, but a super
sensitive nature would be part of it. Johnson says that it
is the upper brain stem. That is the mid brain where the
amygdala is. I don't know if Gupta's program works or is just a
hoax; I'm going to investigate it more. But this explains why we
have similar and different symptoms. Each one of us is made up differently
with our individual strengths and weaknesses in body systems. So what
remedies may work for one may not work for another. And maybe it
hits most of us in our forties and fifties because the body can't take any more
overstimulation. My problems have been slowly but steadily
getting worse for 7 years. I'm gradually getting sorer and weaker as I
lose muscle because I can't move. Maybe this is what happens when your
amygdala is permanently overstimulated. And there are
thousands of us. I just wonder why people in third world countries don't
seem to have much of this."
3. MENOPAUSE,
GERD and FMS
From a
reader--
I took hormones when I started
menopause and I don't think they did too much for hot flashes. My blood
pressure went up too. At that point I stopped the doctor's prescription
and started an herb called dong quai. I felt human again! Got rid of
the extreme anger and brought my blood pressure back to normal. My doctor
was amazed. I put on weight as well. And
have not been able to lose any until the last six or eight months. Now I
am on a gluten free diet and I seem to lose, slowly. The doctor thinks
it's because my insulin is not being stimulated with the carbs from bread,
etc. I still eat potatoes and sugar, but do not get hypoglycemia much any
more. I also have GERD and take Prevacid on
days that it is bad. I have more energy because
I take 2000 mg B12 in the morning and another 1000 in the afternoon. If I
take any more I can't sleep. But I'm careful not to take an antacid
when I take the B12 or it won't be digested. For some reason olive leaf extract gives me energy, so I take two
in the morning and two in the afternoon. As for
lack of motivation, boy, can I relate to that. Absolutely nothing thrills
me anymore. I have to push myself to do anything. It
reminds me more of burnout. I have to push myself all the time. What
used to give me enjoyment no longer does. This is characteristic of
burnout. I need to work on meditation and doing nothing until I am
rested.
My FMS did not really kick in until
menopause (eight years ago). I don't think
pushing yourself to do stuff will help. I am going to check out that
program with Ashok Gupta as it really makes sense to me."
4. CLAW
HAND
From a reader--
"I have CFIDS and Fibro. A few years
ago my left hand, after a stressful week, literally turned into a
"claw" shape, and I couldn't fully open it! It was very
scary. I went to my rheumatologist (who is very CFIDS and Fibro- aware),
who told me I had what was probably a permanent edema (swelling) on the palm of
my left hand, and that I also had Reflex Sympathetic Dystrophy (RSD). He
sent me to a physical therapist who works specifically with hands. She
worked gently with my hand in various ways for several months, and also taught
me exercises to do at home with my hand. Thankfully, the "claw"
disappeared, and I can open my hand fully, and use it normally. (The edema is
still there, but the doc said it would be permanent). Although I no longer go to
the physical therapy, I do the exercises regularly, especially when I'm going
through a stressful time, and my hand feels a little stiff."
In 1982 when I developed fibro at age 30
www.fms-help.com/fibro.htm, I too had something the doctor called "claw hand deformity."
It was from excessive typing as a legal secretary on an "old, work your fingers
to death" IBM typewriter.
5. VITAMIN D DEFICIENCY
- NOT?
From a reader--
"I had a comment about
#6 in your last newsletter www.fms-help.com/060908.htm about
fibromyalgia being a vitamin D deficiency. I was hopeful when I
first heard about this too. In fact, my rheumatologist knew about it, and
had started putting all his patients on high-dose vitamin D, 50,000IU per week
by prescription. I took this weekly for 2 years. In addition, I
continued to get outdoors a lot in the sunshine, as I have always done. My
doctor monitored my blood levels regularly. Well, they never were really
low to begin with, and they went even higher after 2 years on the
supplements. I noticed absolutely no improvement in my FM/CFS. In
fact, I think I started to have a toxicity reaction to the supplements, and had
to stop them. Too bad it can’t be as simple as supplementing with one
isolated vitamin or mineral. I no longer take the supplements, but I do
get natural sunshine, as it lifts my mood, although still does nothing for my
other symptoms."
And
from another reader--
"I read #6 in this
last newsletter about Vitamin D and Fibromyalgia --Dr.James E.
Dowd (Rhuematology) who I use to go to, has co-authored a book "The
Vitamin D Cure." He moved here(Mich) from Texas and within a yr
started having "Fibro-like" symptoms. Finding his Vit D level down he
started doing research and testing all his patients with pain symptoms finding
most all of them low. ( Normal is in the mid 40's, mine was 13 ) He has
been on TV several times discussing his book and Vitamin D
levels."
6. DOM'S
INTERVIEW
From
a reader--
"I read your interview at Bellaonline and was
disapointed......that it
was so short!!!
In that interview you explain things very clearly, I
would
say not only clearly but intelligently, and I
must admit reading that
interview reminded me of my
own situation and how I feel about it,
that
may seem weird but... reading the interview made
me emotional and my eyes
swelled up with tears..."
From a
reader--
"A very interesting article. I was 19 when I
first got sick and in the last 42 years I have not seen enough change in
the medical community nor in my family's idea of FM. It is so
frustrating but thank goodness there are people like you who understand and
believe."
7. BREAST
CANCER and FMS/CFIDS
"I was diagnosed
with invasive breast cancer and wondered if you others who have CFIDS/FM and
breast cancer. The CFIDS Association had zero information and I need to
talk with someone who has all three. - Sandy"
If you have had
experience with cancer treatments and FMS/CFIDS, please contact Sandy
directly. This is very important. Thank you!
8. IMMUNE
BALANCING POWDER
From a reader--
"I am sleeping
like crazy which for an A-type person like me is such a gift even if it seems
new. Thank goodness I discovered the immune powder. I didn't
take it right away this morning and felt really awful, headachy and
depressed. I just took some about an hour ago and now I feel much better
-- still achy but not depressed, not
awful."
I've had good results with this powder since
2001 for swollen glands, racing thoughts, gas and bloating, and
complexion. Prior to using it, my sleep was so bad that even sleep
meds did not help. This powder works in the "gut" to re-educate and
direct the immune system. Write dombush@bellsouth.net for details.
9. CELL
PHONE RADIATION LEVELS
I found out that
my cell phone is on the list of the 10 cell phones with highest radiation
levels.
10. WHO
GETS FIBRO?
Reader
1--
Reader
2--
"Yes, Fibromyalgia does strike anyone and everyone.
Such a shameful waste of human energy! Never planned on
my years of retirement being spent in such an inactive manner...never."
Reader 3--
"Wow. We are an amazing bunch
of people."
Thanks to all
who participated in my occupational survey!
11. LYRICA
SIDE EFFECTS and WARNINGS
From a
reader--
12.
LOWERING PAIN LEVELS
From a
reader--
"I
volunteered for a hospice organization here in Phoenix, AZ
for 12 years until FMS entered my life a year ago. This hospice was awarded a
grant to study the effects of several comforting modalities applied to the
patient. Three of the modalities I have personally used and have witnessed
remarkable improvement in the pain levels. At times the pain level in a terminal
patient is a ten. On a scale of 1-10, 10 being intolerable. All of these would hopefully
lower the pain level in fibromites--
1) Touch
therapy: after soothing touch (arm/shoulder/hands etc) preferably
with lotion, relaxation was remarkable and anxiety noticeably reduced. Cozy
blankets appear to comfort also.
2) Essential
oils: we tried lavender oil to reduce pain and anxiety and lemon oil to
increase lethargy and unresponsiveness. Both worked. Of couse these wouldn’t be
used with someone who was allergic or sensitive to
fragrances.
3) Music
therapy: classical calmed (unless the patient had hated classical all
of their lives). Familiar tunes (hymns, patriotic,ballads) of their day lit up
the brain waves for hours after they listened. Don’t play opera for a country
western listener or belly dancing music to a violist…it has been shown to
produce anxiety! Keep the sound at a comfortable or soothing
level.
13. ALLERGIC TO
WIRELESS INTERNET?
14. ARE MERCURY
AMALGAM DENTAL FILLINGS HARMFUL?
15. MERCURY DANGERS
OF THE NEW CFL LIGHT BULBS!
16. ACID OR ALKALINE
FOOD CHART
From a
reader--
17. BREATHE OXYGEN IN
A CAN
Has anyone tried this for fibro
fog or CFS fatigue? Write dombush@bellsouth.net. My doc says
my blood oxygen level is 99% and that you have to be 93% or below for him to
prescribe oxygen. Still, I am thinking of getting oxygen somewhere for
help with fatigue and brain fog at times. Makes sense to
me.
18.
VEGETARIAN DIETS
I occasionally hear
from vegetarians who have fibro. One is led to believe that being a
vegetarian cures all illnesses, but not so. I just got this tip from a
person I greatly respect in the medical/supplement field:
"No vegetarian diets if you’re over
35! Hormones suffer on vegetarian diets."
19. DR.
TEITELBAUM'S PROTOCOLS FOR FMS/CFIDS
In the past 26
years, I've tried many of these meds and supplements, which I discovered by
trial and error. For a list of meds and supplements I use now, see
www.fms-help.com/what.htm. Without them, I have no functionality. (Gotta keep
working....)
20. HHV-6
and CFS/ME
From a reader about
herpes virus HHV-6--
21.
SAMENTO FOR CFIDS/ME
From a
reader--
"I personally have tried a couple of hundred herbal,
nutritional
and mineral supplements over the course of the last seven
years of my own battle with CFIDS/ME and Samento has
been the most
helpful to me. It is my hope that you will find
it helpful as well. I have
found about a dozen or so other
helpful herbs and nutrients, but this one is
number one."
Here are some links about
Samento:
22. SIMPLE
EXPLANATION OF FIBROMYALGIA
Check out this
fantastic article posted on Dom's message board:
Excerpt: "Fibromyalgia is a complex
condition that's difficult to understand, especially if you don't have a medical
degree. Because it involves the brain and nervous system, fibromyalgia
can have an impact on virtually every part of the body...A lot of
illnesses involve one part of the body, or one system. Fibromyalgia, however,
involves the entire body and throws all kinds of things out of
whack. As bizarre and confusing as the varied symptoms may be, they're
tied to very real physical causes. Fibromyalgia can take someone who is
educated, ambitious, hardworking and tireless, and rob them of their ability to
work, clean house, exercise, think clearly and ever feel awake or
healthy."
Read the complete
article - it's good for sharing with people who don't know what fibromyalgia
is! Here's a comment that I got from a reader about this
article:
"Thank you so much for the link - simple,
literate, understandable article. I sent it to my
non-understanding SIL - maybe she'll see the 'it's not laziness'
part. Now to work on my totally resistant husband."
23.
ENTEROVIRUSES and CFS
From a
reader--
24. BRAIN MOLD and
DEPRESSION
From a
reader--
http://www.cnn.com/HEALTH/blogs/paging.dr.gupta/2007/08/are-you-suffering-from-brain-mold.html - Another Paging Dr. Gupta article. Mold goes to the
brain and causes depression. Interesting posts at the end of this
article from people who are sick from mold. I wonder about the mold
problem not only in our homes, but also in schools and public buildings, and how
so many people, even children, have to take anti-depressants now! (The
Bible talks about the dangers of mold too!)
25.
RSDS
Reflex Sympathetic Dystrophy
Syndrome (RSDS) is sometimes concurrent with
FMS/CFIDS.
26. RATE
YOUR MEDS
See what others
patients say, and also offer input--
27. LYME
DISEASE ON ABC NEWS
http://abcnews.go.com/GMA/story?id=5300584&page=1 - Lyme disease is arried by
ticks. Sufferers are often diagnosed as CFS or FMS.
The article
states: "Just because medical science doesn't have the answer
that doesn't mean you don't have a problem or it's all in your
head."
28. THE
GUT IMMUNE SYSTEM
"80% of your immune system is located
in your digestive system."
This is about the
importance of probiotics! I use an immune balancing powder that works in the
gut. I also take an
all-in-one powder (vitamins, minerals, probiotics and fiber) daily, and
additional probiotics when needed. Read more about
the fascinating "gut brain" in previous newsletters www.fms-help.com/newsletters.htm. If you want info on either of the powders, write dombush@bellsouth.net.
29.
COCONUT OIL
"Coconut oil, despite being 95 percent
saturated, is an excellent oil to use with fibromyalgia and other immune
deficiency conditions because it contains high levels of a medium-chain fatty
acid called laurate, or lauric acid. This fatty acid is readily absorbed by the
body and used for energy. Lauric acid is also known to be antiviral,
antibacterial and antifungal, making it an excellent supplement for intestinal
disorders, which are common in fibromyalgia. Lauric acid is also found in much
smaller amounts in butter."
A reader
commented:
"Re coconut
oil - I tried and didn't notice much. It's good for you though so couldn't hurt
- supposed to support thyroid health too.""
30.
FOOT MASSAGE
"Ask someone to give you a foot massage (aka
foot reflexology) - when cortisol levels are up, you can be
certain that too much energy has gone up into your head. A foot massage is a
great way to calm down that excessive nervous energy in your
head."
Ahhhhhhh!!!!!!!!
31. CHLAMYDIA PNEUMONIAE & HHV6
VIRUS
From a
reader--
"I learned some
great info this week from a new virology specialist I've been
seeing. All about mycoplasmas - amazing stuff. Specificially
a mycoplasma called "chlamydia pneumoniae" - here is a great
link: http://www.cpnhelp.org. Most with CFS have this. I was FINALLY checked for a long
list of viruses, bacterial infections, funguses (they recommend on Dr.
Tietelbaum's website) and found I have 4 mycoplasma infections. I want to send
you links about this - treatment, how to find docs, etc. It's the latest info
from Stanford's virology researchers. For example, did you know
this chlamydia pneumoniae mycplasma is called the "heart attack
germ" - and many with CFS die of heart attacks, which is what is
written on the death reports rather than CFS? I have a HHv6
virus, in the non-STD herpes category, that is similar to AIDS - and
will send links for that. All these years you have been so
right on about the mycplasma/viral things being the cause. Honestly I
never thought I had viruses, considered that CFS, and that I JUST had Fibro, so
didn't have any infections. Boy, was I wrong. The good news is there are ways to
treat this stuff and many are getting great results. I am taking nitroglycerin
and amazingly it also nearly wipes out my pain! Also want to talk to you
about liver damage common w/ CFS/FMS and how to treat
that."
32. DOM'S UPDATE
Hi Everyone!
I'm still on a
sabbatical - mainly trying not to answer email in an effort to spare my hand
from typing. I have some osteoarthritis ("wear and tear") from a
lifetime of piano playing and
typing.
In
recent fibro news, my doc wanted to me to try Lyrica, but my experiment
lasted only 3 days. My reasons for stopping: I don't have fibro
pain anymore (only during the first 14 years, 1982-1996), the side
effects reported are scary to me, and thirdly, I found out it's
expensive, so even though my doc gave me free samples for 6 weeks, I couldn't
afford to take this med on top of everything else I need to function.
My current regimen is at http://www.fms-help.com/what.htm. I think I
will stick with what works for now. Having been on so many
prescription meds, I have great appreciation for natural
supplements that have given me so much of my life back - and without side
effects!
There seem to be "ups and downs" to this illness that are
inexplicable at times. Most of the "crashes" I've had have been from too
much "stress." I continue to have to learn to live
with (and try to accept) my limitations, much as I wish things were
different. Despite
having to "work around" this illness on a daily basis, there are happy times in
my life too! My main joys are:
the Word of
God (reading the Bible, hearing Bible-based messages, going to sleep
listening to scripture tapes...the truths of God's Word give me security
and stability!) I love our church, Madeira Baptist www.fms-help.com/MBC.jpg. I
enjoy practicing piano and learning new songs for choir and church
services. I enjoy teaching my piano students (age 5 to retired
www.fms-help.com/students.htm).
And I love our two little dogs: Buster, a chihuahua / rat terrier
(black, white and tan) and Cheeto, a sweet-natured long-haired
chihuahua (white and tan) - who make our house a home. They
bring affection and laughs to our otherwise "empty nest" household.
Thank God for pets who love
us unconditionally on good days and
bad!
If you
have questions or comments about FMS, CFIDS or M.E.,
my MESSAGE BOARD is open
to all newsletter subscribers. The support group is located at
http://health.groups.yahoo.com/group/dominie. Presently 335+ readers are discussing topics of interest to
fibromites. (If you found this newsletter online and are not yet on
my mailing list, please subscribe at my site www.fms-help.com.)
'Til next time,
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.