DOM'S
NEWSLETTER
April
20, 2008
"Telephone -
Telegraph - Tell Dominie"
A compassionate
informative newsletter for people with FMS, CFIDS &
M.E.
Topics are in
PURPLE. Readers' comments are in
black. My comments are in
TEAL.
1. READERS
WRITE
"I just came across your web page www.fms-help.com and was
intrigued, and much interested in what you have learned in the
many years that you have endured this malady."
"Still love your newsletters."
"Thanks for
the newsletter www.fms-help.com/041508.htm!
Amen & Amen. DO NOT PUSH! PACE YOURSELF! BUDGET YOUR STRENGTH!
LEARN TO SAY I'M SORRY, BUT
NO."
"If we
don't help ourselves, we're doomed because the medical profession is just as
baffled by this as ever."
"I have recently been diagnosed with Chronic
Fatigue Syndrome after years of suffering, so was very happy to find your
website recently. It explains a lot of things that I was
previously unaware of, and has given me some hope in finding
something that can ease my symptoms."
"I so appreciate your
newsletter."
2.
EXERCISE
From a
reader--
"I am so glad you put the article in about
exercise www.fms-help.com/041508.htm. I had debilitatating pain,
migraines and total exhaustion after 20 minutes of exercise. This really
encouraged me."
3. DENTAL
COMMENTS
Reader
1--
"Dental suggestions?
Find a
mercury free - painless dental surgeon. In the meanwhile my own teeth are
a mess."
Reader 2--
"People are dental phobic because of the mercury vapor in the
dentist's offices. Mercury causes neurological problems and intolerance to
pain."
Reader 3--
"I think we
had the same dentist! [No novacaine for fillings
during childhood.] I panic at even the idea of going - my
husband has to make the appointments and not let me know until the day before,
when they prescribe valium for me to try to make it through the night
and through the drive to the dentist. It also helps that I have a very
understanding dentist (never thought the two words would go hand-in-hand) who
makes our appointments together (mine and my husband's) and at the very end of
the day so I don't hear anyone else, no one hears my panic, and they can focus
on making it as comfortable as possible for me. I also wear headphones to drown
out as much as possible, and I get laughing gas even for cleanings. Good
luck - know that there's someone out there feeling the same
thing!"
Reader 4--
"I recently
came in contact with your websites. I am the New Mexico State Coordinator
for an international nonprofit that educates about the dangers of mercury dental
fillings. DAMS, or Dental Amalgam Mercury Solutions, Inc. is one of
several such organizations battling to make mercury fillings illegal.
Denmark, Sweden and Norway recently outlawed the toxic implants because there
are many safer alternatives.
Fibromyalgia, CFIDS, MS, lupus, and many other autoimmune
diseases are caused by mercury exposure. When
having mercury fillings extracted, make sure you visit a mercury-free dentist
who knows how to do this difficult procedure safely. If you are sick, or
do not wish to become sick, do not walk into a dental office where mercury
fillings are placed. You can look up DAMS on the web and find a state
coordinator with a list of qualified dentists where you live."
Reader 5--
"I have the same problem with dentists for the same
reason, and he used to jab that sharp instrument into a cavity and
say…”does that hurt?” !!??!! nutcase. Then my orthodontist used a wooden mallet
and metal chisel thing to pound braces on---no novacaine, and he “accidentally”
pounded them into my molar gums several times. He also made an “appliance”
to correct my underbite---incorrectly, which caused my gums to recede. I
don’t know why they don’t write something in your record to indicate you can
only hold your mouth open so long. And that you have fibro, cause you have
probably told them every time you saw them, and when you called in in the
first place you asked them if they had experience—they all say yes, but
it’s all bla,bla,bla."
Reader 6--
"I am another who has to avoid excess stress. I
discovered that yesterday when I had to get a temporary crown and couldn't keep
my mouth open long enough for them to work in it. They actually gave me a
child's size bite which kept my mouth open so I didn't need to stress my
muscles. I was surprised to find that the bite helped with my back pain
immediately. Which makes me wonder whether TMJ isn't a part of what I have
too. This is a such hydra-disease."
Reader 7--
"I wanted to take a moment to respond to
your reader who had the question about FMS and going to the dentist. Here is a
link to 3 great books written by a FMS dentist. Having FMS causes our
teeth/mouths/gums to be much different than "normals". One thing is we often
have highly acidic saliva. That means more cavities or broken/chipped teeth,
more gingivitis, plaque, and gum pain. Also we feel the pain more because of the
acidity in our mouths. Dr. Flora Stay is the lady who wrote these books
and she tells all about how to get more comfortable in the chair, what to tell
your dentist re/ FMS, and how to spread out your treatments so you have more
rest time in between. She talks about special dental products that are helpful.
Also it's interesting that many of us have allergic reactions to Novocain, or
else the Novocain does not numb us at all. So some w/ FMS need to go w/ the
"laughing gas" to control the pain. Anyway I think this link will be helpful to
your readers - I read the book and found it very interesting and helpful.
http://www.amazon.com/exec/obidos/search-handle-url?%5Fencoding=UTF8&search-type=ss&index=books&field-author=Flora%20Parsa%20Stay"
4.
SLEEP
From a
reader--
"For those who do not necessarily have racing
thoughts at bedtime: When menopause hit, I couldn't
sleep. Two months later, a massage therapist suggested a liquid Cal/Mag
supplement thirty minutes before bedtime. It works and I can sleep DEEPLY
from 6 to 10 hours uninterrupted. I use Country Life calcium-magnesium
with vitamin d. I have tons more energy now. Also, try Samento. Look it up. It gets rid of the aching,
depression and moodiness."
5.
TRAMADOL
From a
reader--
"I must
disagree with your reader quoted in Tramadol for Sleep (#7 in your
newsletter www.fms-help.com/041508.htm).
I have been taking this drug for years (generic for Ultram) and to my knowledge
and according to the research I've done, it does not contain Tylenol.
Also, Tramadol often is a stimulant and keeps me awake all night! I
can't take it after 3:00 pm. Others I know that take it have the same
reaction."
6. ADRENALS
From a reader--
"Are you taking an adrenal supplement? I believe taking
DSF has really helped my adrenals get stronger. I am also taking 15 mgs of
Cortef to help in this. I was just thinking
since you seem to relapse after stress, your adrenals are still working below
par. It's something you might want to stay on to help your adrenals work better
and to deal with stress better."
Hmmm. Good
idea. I took adrenal cortex for a year after I experienced severe
emotional and physical stress that almost destroyed me, and I believe it helped
get me back on track. I do okay until severe stress hits, so maybe I
should resume this. Someone told me if you take adrenal supplements too
long that your own adrenals get lazy. Anyone have a
comment?
7.
NEUROTOXINS & FIBROMYALGIA
From a
reader--
"I am very interested in exploring the
part that neurotoxins may have in cause of FMS. Have you heard of Dr. Ritchie
Shoemaker in Maryland? I think he's on to something with this! I hope to see him
this summer. Check out his websites & let me know what you think.
Yes. In fact, a kind newsletter reader sent me his
book "MOLD WARRIORS" when I was adversely affected from working in toxic mold in
2005 for a year. See www.fms-help.com/mold.htm.
8.
TRAVELING
From a
reader--
"I understand about staying
in your own community! I am the same way , certain places I can go and feel
comfortable , places out of that ring I just can't do at all. I shop at a small
private owned market that is low in price compared to the chain super markets
and do ok going there. My hair cutting salon I got used to, now they moved
and I have not been there yet , but sure I will be fine as I know everyone
there (that helps greatly) I visit family and some friends, again depends where
I have to go ! Same with eating out and that is not often, there are only a few
places I feel well in. I guess that’s part of
being a Firbromite!"
9. BACH
FLOWER REMEDIES
Reader
1--
"I know normal people that get help from it.
Nothing for me."
Reader
2--
"The history of Bach flowers. I have used some of their
products. Rescue Remedy works very well. Explore these
sites.
Reader
3--
"Flower remedies are basically homeopathic. They are
essences of flowers at a very low concentration. The best one is called "Rescue
Remedy". It's available in a skin application or a tincture now. I have used it
and found it relaxed me quite a bit. When I first tried it I would fall right to
sleep immediately, but after a week or so the effect wore off. I still use them
on occasion - if I don't fall asleep I will relax a little at least. They are
quite expensive and honestly when I can get my prescription sleeping pills at a
cheaper price I had to go w/ that instead. Right now I find a little
Klonipin works best for me for sleep."
Reader 4--
"I have not tried the sleep remedy, but the rescue
remedy is incredible. You can use it for babies, dogs - on their tongue,
and it is even absorbed through the skin.. I had to drive into town - 65
km about 30 miles for you in USA - to put my lovely dog to sleep. I would
not have made it if I did not have drops of rescue remedy to calm me. does
not have any naster after affects, just gets you through those few hours when
you need to stay in control. I see to it that I always have it in the
cars, incase of an accident, trauma etc. Would love to know if the sleep
one works as well."
Reader 5--
"The Bach remedies (and other manufacturers of similar
"flower essences") are based on the theory that all living things have energy.
Supposedly the energy of the flower is captured in a distillation process. I
know it sounds voodoo-ish, but my daughter swears by Rescue Remedy in situations
in which she is upset and needs a quick support. She also uses a few other Bach
remedies which seem to help her with irritability, etc. and says that she wishes
she had known of one in particular when she first got sick. She thinks if she
had had it then she would not have suffered as much. She uses the Rescue Remedy
spray and carries it with her when she is out and around. She sprays it in the
mouth and has often given a spray to friends who are upset by some event.
They all seem to think it helps them calm down quickly. she uses it as
"emergency first aid."She also puts drops in her cat's water because he has had
a bad kittenhood and is afraid. She says when she stops doing it, thinking he is
better, he starts hiding until she starts up the drops again. If her
symptoms get too bad, though, the stuff doesn't work so it has to be taken early
in the cycle.
The Rescue Remedy Sleep didn't help her with her sleep at all. I think it
is for those who have a lesser problem. The thing is, though, that if you take
these things and don't use the right remedy or it doesn't work for you, it also
doesn't harm you. Some internet sites have lower prices on the drops than you
might find in health food stores, so I order from those sites for her.
In a way, it is similar to using oils for support. Sometimes it helps,and
sometimes it doesn't and sometimes you just have to try a few to happen upon the
one or combo that works. Her oils don't always work for her, either, depending
on the situation, but often they do, so she keeps them in her arsenal.
By the way, her doctor, who is an M.D. and worked at the Fibro and Fatigue
Center for awhile, uses Bach essences in homeopathic mixtures he works up for
his fibro and CFS patients to go along with drugs and herbs as he individualizes
the protocols. He left the F & F Center in part because they wouldn't let
him use his alternative stuff with the patients. He said he didn't want to deny
patients things that might help them just because the Center wanted to
"standardize" what was offered in all of their centers. He is pretty determined
to try all kinds of things that might help when a patient is not getting better.
He consults with Dr. Cheney to keep up with current research but doesn't
feel that a product has to be proved successful statistically before he tries it
with his own patients. I hope this helps you. I know your sleep situation is a
continuing problem."
10.
VITAMINS FOR DEPRESSION
From a
reader--
"(VITAMINS FOR DEPRESSION)
1/ (B COMPLEX)= FOR MENTAL
AND EMOTIONAL WELL BEING
2/ (ST JOHNS WORT) =
IMPROVES MOOD FOR MILD AND MODERATE DEPRESSION
3/ (VITAMIN C) BOOSTS
ENERGY LEVELS
4/ (MAGNESIUM) = IS
CRUCIAL FOR NERVE FUNCTION
5/ (CALCIUM)= HELPS YOU
RELAX
6/ (ZINC)= BOOSTS BRAIN
FUNCTION
7/ (AMINO ACIDS
TRYPTOPHAN)= STIMULATES THE PRODUCTION OF SEROTONIN
8/ (FOLIC ACID)= REDUCES
HOMOCYSTEINE LEVELS, WHICH CAN INCREASE DEPRESSION
9/ (CHROMIUM)= STABLIZES
BLOOD SUGAR LEVELS WHICH CAUSE DEPRESSION
10/ OMEGA 3"
11. WHAT KIND OF
DOCTOR TO SEE?
From a
reader--
"I have seen both a Rheumatologist and a Neurologist. The
rheumatologist diagnosed me with mild Lupus even though not all of the tests
were positive. She really does not truly believe in FM. The neurologist only
looked at my balance issues and ignored the FM. So what I have is a case of FM,
still in pain and unable to leave the house without a cane or walker. Neither
helped me so I do not believe that neurologists will be of much help or welcome
us with open arms. Dr. Devin Starlanyl ( I am not sure about the spelling
of her last name) has FM and has now called it a neuromuscular disease. I
believe her. She has a website which is very informative. Too bad she does not
have a practice so I could see her."
12. NEUROLOGISTS FOR FIBRO
PATIENTS
"FYI.... I have seen Dr. Dennis
Dewey in Orange Park and he believes in Fibro. He ran all types of
neurological test to ensure that what was going on was Fibro and it was. I
highly recommend him if anyone wants to see a neurologist.
A shift in thinking is underway.
With all the research showing fibromyalgia isn't rheumatologic but is actually a neurologic disorder, some
doctors say we should no longer see rheumatologists.
It makes some sense -
rheumatologists specialize in joints, bones and muscles. They're not experts on
how the brain perceives and processes pain. Neurologists are.
But will neurology
welcome us with open arms? Are neurologists thinking how nice it would
be to take on the challenge of fibromyalgia? Will their waiting lists
accommodate a huge influx of people?
Many of us have had bad luck
with GPs or internists. Do you suppose they're busily educating themselves so
they can diagnose and treat us effectively?
Call me a cynic, but I'd say,
not likely. Are we going to get stuck with primary care providers who don't even
believe we're sick? Are we going to end up without a "home" as the medical
community takes us out of the rheumatologic category without providing a viable
alternative? What's your opinion?
I'd love to hear from those
of you who already see a neurologist. How has your experience been? Do you think
you're treated more effectively? - Carla cbourg@comcast.net"
13.
WATER CURE
From a
reader--
"Trying the water cure, and it seems to
be working. Have had 2 weeks of more water and sea salt. So far have had 4
good pain free days."
http://www.watercure.com/index.html -
"You're not sick; you're thirsty. Don't treat thirst with medication."
http://www.watercuretribute.com - This website is a
tribute to the late Dr Fereydoon Batmanghelidj, M.D. who discovered the
incredible healing power of water while being detained as a political prisoner
in an Iranian jail. Dr Batmanghelidj is the author of several books including
the famous book entitled: "Your Body's Many Cries For
Water."
14.
MIGRAINES
From a
reader--
"One of my symptoms that i have lived with for
20 years were the most excruciating migraines (these started before the CFS).
But about 1 and a half years ago i accidentally stumbled on almost instant
relief from these headaches and am now able to prevent it ever developing into a
full blown migraine attack. As soon as i feel the symptoms coming on i drink up
to 4 cups of green tea (it has to be quite pure, i use one that
is 99% pure). the symptoms then either completely disappear, or i am left
with a very mild headache. i don't drink caffeinated drinks or tea with
tannins at any other time which i think may make a difference, as i believe
the tannin in green tea helps the blood vessels to expand and allow more oxygen
to get to the brain. with regular caffeine use i believe the effect is
minimised. i have never seen any reference to this on the internet
and am keen to find out if this cure would work for others. If it does, i
am keen to spread the word to other sufferers as i know how horrible migraines
can be. it does not contain caffeine, but does contain tannin. Tannin
is very similar chemically to caffeine so has a similar effect on the body as
caffeine. this is what i have been lead to believe anyway, but im not a chemist.
i did wonder if ordinary tea and coffee would have the same effect on my
migraines, but they don't. it seems to be specific to green tea - and only good
quality tea, not the supermarket brands."
15.
WORK FROM HOME
From the message
board--
16.
MOLD
From a
reader--
"I remember your column about the mold
www.fms-help.com/mold.htm. I
am glad you are doing better. It is a miracle it didn't kill you. We
had a puppy who was exposed by his owner to toxic mold and he just never
recovered."
17.
STRESS CAUSED FIBRO
From a
reader--
"I was diagnosed with this 2 yrs. ago
after enduring mega stress at my job (new owner 'very bad')
and a very bad fall, also at my job. When I was first
diagonised, I would not believe the Dr. I put my shoes back on grabbed my
purse and just walked out. I was sure that Fibromyalgia was all in
people's heads, boy I could not have been more wrong. Since then I have
learned much more."
18.
NICKLE ALLERGY
From a
reader--
"I belong to the fibromyalgia network and
ordered a 25 page booklet on diet and exercise in which they talk about
supplements to take and then a small paragraph about NICKLE ALLERGY.
It states: Another dietary factor that FMS patients should consider is nickle.
Allergy to this trace mineral is found in 52% of patients. Nickle allergy
can cause diffuse chronic muscle pain, fatigue so people should make an effort
to avoid ingestion of the substance. Cigarette smoking and ear piercing
both increase the chances of developing an allergy to nickle. In
addition various foods contain significant amounts of nickle such as chocolate,
licorice, oatmeal, shellfish, broccoli, legumes, nuts, lettuce, soybeans,
spinach, baking and cocoa powder, soft drinking water, and acid beverages that
may dissolve nickle during manfacturing from pipes or metal containers.
Roland Staud is one of the Dr's who also believes in this. He wrote
'Fibromyalgia for Dummies.'"
19.
ECZEMA
"Is eczema is common for those of us who have
FMS? I just discovered the reason I have been itching for years is due to
that. So at least now I have a cream from the doctor that I am trying out
to see if it works. - Shelley"
20.
KEFIR
From a
reader--
"Very important regarding gluten free
www.fms-help.com/041508.htm.
I am a dietitian and everyone tells me this about being more sensitive after
they start to avoid. I will say however, that I did not start getting
better, in spite of all my alternative stuff, until I started taking Kefir every
day (Helios brand plain mixed with honey and two tablespoons high lignan flax
oil). Apparently this healed my gut because I no longer have these extreme
gluten reactions. I also, for the first time in years, have started gaining real
weight. Folks, I have a lot of food sensitivities and I ate a lot of
chocolate candy to add calories (I couldn't tolerate a lot of food).
I am now up to 130 and am maintaining without the chocolate candy. This is
miraculous! The other thing I started taking a month before then was Inositol
IP6 from Enzymatic therapy (just in case that may be involved, but I truly
believe it is the Kefir- another of my patients yesterday reported miraculous
results with her GI problems from starting to take Kefir). It is expensive for
her, she is on disability so she just takes it every other day. I do
have fibro, but I did at one time have Rocky Mountain Spotted Fever similar to
Lyme Disease. A doctor I went to gave me antibiotics because she had just went
to a conference about it. Otherwise would have missed it. I would
recommend probiotics because I don't even take antibiotics any more. I just take
some natural antibiotic and probiotics. I also take homeopathic stuff
too."
21.
DOM'S SUPPORT GROUP
22. VITAMIN D &
MAGNESIUM
From a
reader--
"
I had my fibro doctor, Dr.
Mark Pellegrino, check my vitamin D and magensium levels when I had my bloodwork
done for my bioidentical hormones and found out that mine was very low.
The lowest level they like you to have is 50 and mine was 28. I had
started taking about 2000 IUs of vitamin D about 8 months ago and would hate to
see what my levels were then! It had helped my pain levels
immensely. Now I am to increase my vitamin D to at least 5000 IUs or more
then have my levels checked again in 3 to 6 months. Since vitamin D has
been linked to decreasing pain, fibro fog and cancer I am glad I got it
checked. It makes me wonder if my low vitamin D had something to do with
me developing melanoma back in the summer.
My magensium levels were normal but he advised me to take
extra magnesium anyway as it is linked to decreasing muscle pain. I asked
him what the best form was and he said magnesium glycinate and recommended I try
the fibro care he sells in his office. It is from a company called To Your
Health which is owned and run by a man who has had fibro and chronic fatigue for
many years and it is a very reputable company. Dr. Pellegrino is one of
the doctors on their board. All of their supplements are independently
tested for purity and quality and I have used their products before. By
buying it at my doctor's office I save the postage and handling.
When I was on the 2000 IUs of vitamin D I was able to get
off all oral pain meds and have gotten to the point where I am doing 6 miles a
day of walking or aerobic walking (all low impact of course) which is pretty
amazing considering it once took medications to just keep going through each
day. I do still use the lidoderm patches and compounded pain cream when
needed, but that is mainly for pain from my spinal fusion done in 1998 which
resulted in adhesions along the sciatic nerve."
23. DOM'S
UPDATE
I've
been feeling good, despite a lot of stress descending on me lately. I
think it's because I have been putting my health first, and TRYING to take
better care of myself. My current regimen is at www.fms-help.com/what.htm. It helps me stay
functional.
Although I am not
able to answer all of my email, if you have something to share, please write
dombush@bellsouth.net. I know you understand....there are only so many hours in a
day, and I teach piano 5 days a week and have also begun attending a new church
that needs help with piano. I will do my best to keep getting the
newsletter out. I have learned so much from my readers over the years
(since 1996), and I'm always glad to share that info. If you need some
immediate advice from a fellow fibromite, or just some sympathy, visit my
message board at http://health.groups.yahoo.com/group/dominie
May God bless each of
you!
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.