DOM'S
NEWSLETTER
MARCH 2,
2007
For people with
FMS/CFIDS and other neuroendocrineimmune disorders.
Check out 19 topics
below in PURPLE.
My comments are in TEAL. - Dominie
1. READERS
WRITE
"Thank you so much for your work on our
behalf and wonderful newsletter. I look forward to reading
each one."
"I just got a computer and was looking around
and found your website www.fms-help.com - what a most wonderful
service you are so generously providing to others with FMS."
"Your website is really
informative."
"This week the newsletter hits like an
automatic machine gun! This newsletter is the only one I can read
without getting overwhelmed. I don't read everything, but I am able
to scroll through without getting depressed!"
"Keep up the great work. I feel you have been
such a blessing to so many."
"There are days where I just cry and today I
am there
but your email has helped me make it through another painful
flare."
2.
BIPOLAR
Reader
1--
"I am concerned with someone suggesting that
persons suffering from BiPolar disorder not use anti-depressants. ....as
suggested by a Dr. Phelps (name)......Bipolar is a chemical disorder. It is not
the same as someone depressed; Medications create a balance of this chemical
disorder. I had a dear friend who lost her daughter, by suicide, after her MD
said she didn't need her medication, (ordered by her counselor) that she needed
to deal with the mood swings................etc. I have lost family
members from suicide when they stop taking their meds. I also have family
members who take their meds and live a full productive life. I would tread
carefully and get other opinions before taking advice from such a doctor
.................Bipolar is a very misunderstood illness."
Reader
2--
"Was just going down through the list of
topics for the newsletter. I wanted to mention to you that bipolar
disorder is often misdiagnosed in women over 40. In most cases, if a woman
over 40 is newly diagnosed with bipoloar, she should be sent to an
endocrinologist and have Graves Disease ruled out. A
friend of mine looked for all the world like she was going bipolar last
year. Thankfully her NP sent her to an endocrinologist. Meanwhile, I
was researching the literature and about the same time I found articles to
support it, the Dr diagnosed her with Graves. It's an autoimmune
thyroid disease and can be deadly if not caught and
treated. Lithium and antidepressants obviously don't
work. In the years preceding the diagnosis, she had many
symptoms very similar to cfs and fibro - immense difficulty sleeping at night,
constant pain and stiffness, etc. What I find most
alarming is that psychotherapists, whether MSW's or PhD's, don't seem to realize
there can be a physical disorder and don't routinely send their clients to the
Dr for a check up to rule out physical illness before suggesting
medication for mental health disorders that may actually not be
present."
3.
KNOTS IN MUSCLES
Reader
1--
"Wonder if your reader with muscle problems
doesn't suffer myofascial pain syndrome?? That's how mine acted.
While magnesium helps stiff muscles, it didn't cut the
myofascial garbage."
Reader
2--
"It sounds to me as though
this person has chronic myfoascial trigger points in addition to her FMS.
I have both and am blessed to have a wonderful massotherapist who specializes in
trigger point release which helps immensely. For several years I have also
been doing nightly self trigger point release and I can tell you it really
helps! I have gotten rid of sinus and migraines headaches, neck pain, hip
pain, back pain, bursitis, etc. with self trigger point release. I use the book
The Trigger Point Therapy Workbook: Second Edition
by Clair Davies and next to my Bible it is the most read book
in my home! I just look up where it hurts and work on all the trigger
points that can refer pain to that area. There were some very interesting
articles in the Januray edition of "The Fibromyalgian Network Newsletter" on
myofascial trigger points and how releasing them can help fibro pain as
well."
Reader
3--
"This is commonly seen in chronic myofascial
pain syndrome. Not all FMS patients have it but many do. Magnesium
in combo with malic acid works really well when taken routinely and without
fail! I've used a product called FibroResponse daily for
many years and the difference in how my muscles feel is dramatic! I would
highly recommend it! It's cheaper it bought in quantity from this site:
Reader 4--
"First, about the medication.
My pain doctor send me to another "pain management" specialist, who
put me on Cymbalta and Baclofen. (By the way I also had been taking 75mg of
Trazoadone at the time). She told me to stop Trazadone and take the
Baclofen and Cymbalta. I am pretty strong man in general, but that
combination just about destroyed me. I could not sleep, I thought I
was dying. During the day I was totally useless. just sit on the
couch. I went back to the first pain doctor showed her what the so-called
"pain management" doc had prescribed . She asked me to get off them immediately.
It was much too much. Has this person tried Cyclobenzaprin or
Lyrica? As for
other things. I found the instead of Atlas Orthogonists,
Nucca specialists can do more They also specialize in Atlas .
Check their web side www.nucca.com There are some good videos to
watch on there. My Nucca Chiropractor balanced my body in five visits so
my neck and leg lengths hold. I went through a nightmare
with another so called C1 specialist.
Two other items definitely will produce
results is a very balanced liquid mineral formula.
The spasm of the muscles of this patients are most probably from C1 (Atlas) or
general mineral shortage. We make the mistake of taking a lot of Magnesium,
which is ok. But a balanced mineral formula, preferably in liquid form would do
marvels, specially if taken at bedtime. I know names of some.
Another item that has done marvels for my
muscles is a battery operated machine called the
"ReBuilder" www.rebuildermedical.com .Be sure to read the
entire site. The inventor a doctor himself explains in details how nerves,
minerals, and pain work. This machine trains, the nerves, the muscles,
increases endorphins. It is wonderful addition. It is somewhat on
the principle of TENS . You may say that if my muscles are already
knotted, why would I need a TENS like machine that send short bursts
of signals through the muscles and nerves to reprogram them work better by
contraction?. That is the whole point. Muscles knot because of the
nerves signals (if it is not mineral shortage or C1 problem). The nerve
signals are being working wrongly. This machine sets things straight. It works
on one 9 volt battery and it is amazing what it can do. The company will also
send you a video to watch. I do not think massage is
the answer, nor are muscle relaxants like Baclofen."
4. BLURRED
VISION
Reader
1--
"Number 20 "blurred vision" sounds familiar.
It sounds like an Occular Migraine. My Opthomologist says they
are common, they do not hurt and are nothing to worry about. They do not know
alot about them, but my Dr. said not to worry. Mine last for 20 minutes, I
haven't had them in a while, but sometimes you get them maybe twice in a 6 month
period, and maybe you won't get them for a year or so. They are not like a
regular migraine, there is no pain, but it can be scary. I went in to check to
see if I had a stroke and the Dr. said no and then told me what they were. But,
They started at an extremely stressful time for me, so that may be a clue. I
hope that answer might help, I hope you can relay this to this person so they
won't worry."
Reader
2--
"Please pass on to that
reader who had had a couple of weird eye episodes to get to the
doctor immediately. A friend of mine (who does NOT have
fibromyalgia) had a couple of weird, blurry eye episodes that came and
went. When a third one hit and would not go away, she finally went to the
doctor. It was a type of STROKE, and she has permanently
lost the vision in that eye. Not all of our problems are related to
fibromyalgia, although it is tempting to think so!"
5. BRA FOR FIBRO
Reader
1--
"A good quality sports
bra seems to work the best. No underwires unless you are a
glutton for punishment or unless you can find one the seems comfortable.
To heck with fashion, go for comfort!"
Reader
2--
"To the
gal looking for a comfy bra, Barely
There works for me."
6. CLONAZEPAM - KLONOPIN
From a reader--
"All
benzodiazepines are dangerous medications because ALL have a high potential for
dependence/addiction/withdrawal. As an RN, I know this all too well, and
as a user of Xanax at bedtime, I use this judiciously and never
ever overdo it!"
7. RATE YOUR
DOCTOR
Got this from Brett Hodges, formerly of
RemedyFind--
It's free and takes less than a minute
Just
sign-in
to Revolution Health using your RemedyFind email address and password, then
complete registration.
After you sign-in and register, we will: Move your RemedyFind
photo or icon to your new Revolution Health profile, and
Associate your RemedyFind treatment ratings and reviews with
your new Revolution Health account.
Check us out
By registering, here are just a few of the things you can
do:
Rate your doctor and see what
others have to say about theirs.
Ask a health question and get
answers from people like you.
Set a goal and use
tools to track your progress.
Sign-up for the Revolution
Health Membership Preview.
Brett Hodges
Founder, RemedyFind
[I rated two doctors - one is
outstanding and the other was extremely dangerous and ill-informed. The
Revolution Health site has so much to offer -- I hope my readers will check it
out and take advantage of all the free
features.]
8.
SINUSITIS
"I want to respond to reader #2 about
the sinusitis, I have been to doctor after doctor and been given this and that,
nothing works, just money thrown away. I have had this
sinus thing for ten years. My house has a lot of dampness in it, our
house sits under lots of pine trees and I believe that is part of it. But to
tell you how I suffer, right over my left eye it gets so sore, right where the
eyebrow is and I mean when it hurts it hurts and then it comes down
along side my nose and it feels like a tooth absess, I know it isn't because I
wear dentures, I am so tired of suffering with this, everyday of my
life I am constantly searching for something that will make it go away
forever. I cannot use any of the over the counter sinus remedies, I have tried
salt water, sinus cleaners, I don't know what to do and if there
is anyone out there who ever experiences this, please help me, I don't know
where to turn! - Anne poet4jc@alltel.net"
9. SLEEPING LIKE A BABY NOW
From a
reader--
"I have fibro and on top of
that I contracted meningitis. I do feel all survivors should have MRI of
the brain to see about those little strokes I feel i have had. I'm dizzy.
I have had it for 20 years and hormones are a big part of it . i couldn't sleep
and found out i had sleep apnea. people should check into that. I sleep like a
baby 10 hours straight......My doctor noticed that i was always yawning and
huffing and puffing, i am over weight. my snoring got so bad
that my husband was in another room, and honest the neighbors even heard me.
finally he sent me to a sleep clinic. I had stopped breathing 20 times an
hour and i wasnt getting enough air in my lungs and my heart was working
overtime. my brain was lazy, probably from all the drugs i have tried. anyway. i
had a severe case of sleep apnea. I got a breathing machine the
first night i got 9 hrs of pure natural no interruption sleep. I have had it for
a month now. and i have been a different person. no naps
needed, i feel it may even generate new brain cells. i have memory
loss. share this with everybody. its a miracle."
10. MAMMOGRAM DANGERS
From an article sent in by a
reader--
"During a mammogram, breasts are squeezed tightly between two
flat surfaces. This reduces density so that tumors can be revealed. But besides
being a painful procedure, it's also dangerous. The compression
required for mammograms can actually break down cancer tissue and rupture small
blood vessels that support the cancer, causing it to spread.
This is known as the 'compression contradiction,' and here's what William
Campbell Douglass II, M.D., had to say about it in the January 2002 issue of his
Real Health Breakthroughs Newsletter: 'I find it maddeningly
contradictory that medical students are taught to examine breasts gently to keep
any possible cancer from spreading, yet radiologists are allowed to manhandle
them for a mammogram.'
Here are
three reasons why I believe that Dr. Gotzsche is doing the medical community a
service by questioning the safety and efficacy mammograms:
1) If a tumor is large enough to be detected by a mammogram, it's
already in an advanced stage, so very few cancers are caught in the earliest and
most treatable stages.
2) Compression isn't the only mammogram danger.
A
mammogram delivers about 1,000 times more radiation than a chest x-ray, which
may increase the risk of cardiovascular damage.
3)
Studies have shown that women who have mammograms suffer about the same rates of
death due to breast cancer as women who do not have mammograms.
In
previous e-Alerts I've told you about breast exam techniques that don't require
discomfort, compression, or radiation. In Computed Tomography Laser
Mammography, for instance, a combination of laser light and thermal
heat (but no radiation) produce a cross-section view of each breast. And in the
Breast Cancer Detection System, very low electrical currents are transmitted
into the breast without causing any pain. (Electricity passes through cancerous
tissue differently than it passes through normal tissue).
These and
other techniques are not yet used far and wide, and some of them are still in
the experimental phase. Still, the next time your doctor says you're due for a
mammogram, tell him you're interested in an alternative
technique. If every women does this every time the word "mammogram"
comes up, sooner or later the medical community will get the message: The day of
the mammogram is almost done.
11. MOLD & YOUR
HEALTH
[Mold is a more common and
dangerous problem than people think. Toxic mold exposure can
cause similar symptoms to FMS/CFIDS. Read my mold story at
www.fms-help.com/mold.htm. I am doing much better since December 2006, thanks
to cholestyramine. A reader sent me a book by Dr. Ritchie
Shoemaker called MOLD WARRIORS and I learned so much from it! See
www.chronicneurotoxins.com. CSM absorbs mold, cholesterol and toxins. It
was relatively cheap - just $10 at WalMart using my prescription
card. After throwing thousands at this illness, I am finally getting
better with CSM.]
12. PAYING FOR
MEDS
"Can you advise me, on how to get help paying for a medicine
that is not covered by my insurance? Cymbalta has been working for
me,
since it has helped my back pain tremendously, but today I found out that my
insurance plan does not cover this medicine, which means I have to pay
$130.00 a month." - Reply to
Dora.Hernandez@capitalonebank.com
13. REVOLUTION HEALTH FIBRO
PAGE
14. CFS
SURVEY
From Rebecca
Artman--
The Research Subcommittee of the Chronic Fatigue Syndrome
Advisory Committee is examining Pharmaceutical Research for CFS.
At this time we are requesting information from both patients and researchers.
From U.S. patients the committee would like to know
the following:
What medications are you taking or have you taken for CFS
symptoms (please include any medications not from the U.S.)?
What symptoms are your medications treating (i.e. sleep, pain,
nausea, etc.)?
What if any medications have completely alleviated a
symptom?
What if any of the medications has helped with a symptom but not
offered total relief?
What if any of the medications has been ineffective?
Are there prescription medications that you have taken in the
past that you are no longer taking because your insurance does not cover the
medication?
Have you participated in a drug trial for a CFS medication? If
so which medication?
Is there anything that you, as a patient would like to share
with the CFSAC Research Subcommittee that may help the committee make
recommendations to the secretary?
From medical researchers the committee would like
to know the following:
Have you conducted a clinical trial on a medication? If yes
which drug or drugs?
Have you had success working with pharmaceuticals for drug
trials?
*When you respond please let us know which case definition of
CFS you are using.
Please send your information to Rebecca Artman at CFSQuestions@aol.com - please note this account is
being used only to gather data related to CFSAC subcommittees. All information
gathered will be used only for the CFSAC.
Thank you for your assistance in this project. Your feedback
will help the committee make relevant and informed decisions pertaining to
pharmaceutical research.
Rebecca Artman
Research Subcommittee CFSAC
The official CFSAC website is http://www.hhs.gov/advcomcfs/index.html
15. TROUBLE
SLEEPING?
Here are some insightful comments
from Brett Hodges about sleep and fibro at Revolution
Health:
16. THINKING ABOUT THE
"WHY'S"
From a
reader--
"My husband told me one day that he really feels that the
reason I suffer with fibro is because it has made me the most
patient, understanding and sympathetic person he knows. I feel
the same way about my migraines. I've been able to minister to so many
women because of our connection due to pain and/or migraine. It has also
made my children so attune to the feelings of others. My daughter's
kindergarten teacher has told me that she has the sweetest heart and can sense
whenever anyone is having an off day, the teachers included."
[For myself, I think I may have
been a very unsympathetic, judgmental person if things had only gone my way in
life. Various trials, including chronic, unwanted illness, has kept me
humble and tender-hearted. If that's what it does for me, then it has been
to the glory of God.]
17. IBS QUESTION FROM
READER
"I would like to know symptoms that
others suffer with IBS. I have had it for a ong time but nothing like I am
experiencing now, my stomach is so bloated, what are some
things that others do to help with this miserable problem. Does anyone else get
light headed, nauseated and unable to eat, since Saturday I have eaten very
little, it blows up if I eat and also when I don’t. I have no idea what
triggered it but when I find out I won’t ever do it
again. You have my permission to use my
email."
[See my IBS page at www.fms-help.com/IBS.htm for a possible suggestion. My
other thoughts are that this reader may need digestive enzymes or probiotics or
both. Perhaps colloidal silver would help get rid of any bacteria, if it's
an infection. There's also an essential oil for digestive
difficulties at http://dom.younglivingworld.com. It's helped me when I think I've eaten
something bad. You put a couple drops on the navel area and a drop or two
in water and drink it.]
18. MAXALT TABS FOR
MIGRAINES & COGNITIVE DIFFICULTIES
From a reader (sounds good,
but see warning in red
also)--
"I've been having an extreme
relapse. Here are a few thoughts i have had after reading some of your
website info. The one that mentions that the changes in blood flow
to the brain seems to match something one of my specialists said,
I went to him for severe migraines that had become so bad they
were there when i tried to sleep and when i opened my eyes they never went away
every day for weeks these headaches dominated my every day, i couldn't talk,
think, let alone listen to how my children had done at school that day (the one
thing that i can still do as a mother is to listen but now this was taking that
away too) the emotions that came with this i probably dont have to explain to
you or the other sufferers, but i couldn't take anymore and finally gave in and
went t o my g.p who instantly refered me to a specialist. Although
fibromyalgia was not mentioned he said about the blood flow to the brain
being constricted in migraine sufferers, he gave me these wafer
melt tablets called 'maxalt melt' each wafer contains 14.53 rizatriptan
benzoate also includes mannitol and aspartame (e951) you put these on your
tongue and let it melt. After taking the first one (as soon as the pharmasist
had given me the prescription) my pain had gone within 20mins,
i took these one a day for a few days and the headaches that had at that point
lasted 4 wks stopped. As soon as i felt the first symptoms return at any
time i popped one onto my tongue and within 10 mins the signs had gone, the
heavy dragging feeling and the feeling that your head
is going to explode and the cognitive disabilities
returned; it was really weird how i explained it to my husband was my mind felt
like the clearest glass of crystal clear water, i hadn't felt
that for years! So i experimented and on the days when i didnt have
migraine symptoms but was having trouble with the cognitive difficulties, like
thinking listening talking reading communicating a thought that just would not
come off the tongue, it worked it stopped all that and i could have
normal thought process again. I have now been taking these for a
year and use them on all my cognitive difficult days especially when i have an
important meeting with a doctor, or the school teachers.the maxalt tabs work by
opening up the blood vessels that have constricted to allow the blood to flow
properly again. These maxalt
wafers should not be taken with ssri's, antidepressants without your doctors
knowledge as taking two medicines that increase serotonin can cause 'hyper
serotonin syndrome' which left untreated can be
fatal. And guess
what? The symptoms are almost exactly the same as fibromyalgia, muscle
stiffness cognitive problems memory short term involuntary muscle movements and
sleep problems, and parkinsons symptoms (hmm). I have been taking
fluoxetine for 5/6 yrs now an ssrl, (i found these on
google) and it occurred to me that i have been taking the two
together for two yrs now, and that looking back i have developed
these symptoms around the same time of taking fluoxetine, (i wondered how many
of your readers actually took anti deppressants and how soon there symptoms
related to taking this was it before the meds started or after did it
increase the muscle and mind and cognitive disabilities, im wondering
because it seems that im quite sure that i only had the arthritic
symptoms until my doc put me on those anti depressants, from what i
have read and learned about all this over the past few days i think im going to
see my doctor tommorow and see what she thinks about discontinuing the
fluoxetine as i know that i would prefer to take the maxalt as i get a
much greater relief and im 90% sure i did not suffer with depression before
this."
19. BACK TROUBLE +
FIBRO = A CATCH-22?
"I have had severe lower back pain for years. (neck, too) I have been
diagnosed with degenerative arthritis in both areas, and told it would continue
to move up (and down) until my entire spine is affected. My last MRI
showed some kind of disc (fibro fog - can't remember what he called it)
disease. Lately the lower back pain has been almost unbearable, and it has
spread down into my legs above the knees.
I told the doctor about it today, and he had me go for more x-rays - it had
been 3 years since the last ones were taken. And, he wants me to have
physical therapy for my lower back. It didn't dawn on me until late this
afternoon that I can't do "any kind of exercise" or I am in bed for days.
Even the massages I get cause me lots of pain for several days -- then they make
me feel better in the long run. I guess my question for you and others
would be,
do you know if physical therapy that they would do for the
lower back would cause me to have fibro flare-ups? I don't know
anyone else to ask - and my doctor wants me to start the therapy soon. I
can't take pain meds or steroids. (I have Multiple Chemical Sensitivity,
also) So, I feel like I am up against a wall. If the physical
therapy would help the back pain, would it be worth having the fibro
flare-ups? I am 66 years old, and I can't even walk for exercise
anymore. It causes me such pain in my lower back, my ankles, and just
generally all over from the fibro. But, the lower back pain is so severe I
can't walk, stand or lay for very long at a time. You surely may use my
email address for people to respond. Just please ask they to
"specify in
the subject line" what they are writing about, or I may delete
them thinking it is junk mail.
I sure don't want to do the
physical therapy if it causes the fibro to be worse. I know there would
be days when I could hardly move anyway just from the fibro......so how could I
even go to the sessions enough to see if they would help? At least
right now I do have "some" days or
hours when I feel up to doing a few
things." - Alice
aliceervin@msn.com
Well, that's all for now! Thanks for all the interesting info
submitted by readers for this issue. Those of us with FMS/CFIDS can
truly understand what others with this condition are going through.
Sorry that I can't answer email personally, but I do read what you send!
dombush@bellsouth.net
Dominie Soo
Bush
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