DOM'S
NEWSLETTER
May 5,
2007
A compassionate,
informative newsletter for people with FMS/CFIDS/M.E.
Below are 22 topics in PURPLE. My comments are in TEAL. I hope someone
will be able to help the reader in Topic #22 who has a question about
fibromyalgia and insomnia during pregnancy. Thanks to everyone who
contributed to this newsletter! You are my FIBRO TEAM! We
are all on this journey together, and I appreciate you! - Dominie
1. READERS
WRITE
"I really enjoy and
look forward to your newsletters."
"Thank God for you and for everyone
who pitches in with your newsletter."
"You are a pillar for me to see out here in
the cyber-wilderness."
"Love all the info you send
in your newsletters. Thanks so much for taking the time and effort to help so
many people."
2. NEW SYMPTOMS
CAUSED BY MEDICATIONS
From a
reader--
"Can you ask yur readers if their doctors
have ever looked at 'new' symptoms as possible side effects of medication? for
example after I started taking the morphine, i developed IBS. I sometimes wonder
if my fibro fog is due to the combination of anti-depressants, pain and sleep
medicines." [Good question, and one I have been asking myself lately.
I've been trying to cut back on meds and supplements to only take what I truly
need and has shown benefit. Otherwise, I think I'm confusing my immune
system.]
3.
MUSICIAN WITH FMS/CFIDS
Being a church
musician, I could really relate to this email from a
reader--
"Your story on “How Many
Strings Do You Have Left?” www.fms-help.com/042807.htm really
touched me. The other day my mother was talking to a friend about how much
harder it is to get up in the mornings since she has got older (she’s in her
60’s). They laughed about how their brain is ready to run races, but their
bodies won’t let them. I didn’t say anything, but I have felt that way so
many times. My mom doesn’t understand my fatigue at all because like your
letter mentioned – I look fine. We aren’t “sick” in the normal
sense of the word, so people don’t understand. I play the organ
for church and am often so dizzy that I can’t hardly play. But, I
keep on playing, trying not to think about the dizziness, the fatigue, and the
nervousness of having to perform under those conditions. Sometimes, I
leave the organ and go to the foyer or restroom and have a good cry because I’m
so frustrated. I have had to learn that although I may not be the
person I once was, I must accept myself for who I am today."
4. NUMBNESS
& CRAWLING ON FACE
"I am the lady from N.Z. who
had that crawling, numbness on my face. I emailed you saying
that I thought it was hairspray and I took antihistamines and it seemed to be
going. Well it hasn't gone and each morning I reach my hand up to my face to
feel if it is still there. Its been nearly 6 weeks now. They have tested me for
mini stroke and I have had blood tests and a chest xray to make sure there is no
blood clot. The doctor is shaking her head and has no idea what it is, so that
would tell me it probably is another bizzarre symtom of Fibro.
It goes up into my head sometimes and down my arm. It sometimes affects both
side of my face. One lady emailed me and suggested it is lack of oxygen which
would make sense that the blood isn't flowing properly. Anyone else had these symptoms and how long did they last.
P.S. We don't have tics in NZ so it isn't
Lyme disease."
[I too have been having numbness
and tingling in my upper lip. I don't have the money to see a doctor about
it, and I only go if I think they can figure out what it is. Seems like
someone suggested Neurontin for this annoying problem.]
5. DIFFUSING THE FRENZY OF
THE FDA INITIATIVE
From a
reader--
New FDA Initiative Circulating the
Net
Does NOT Warrant Alarm or Action –
Dr. Joseph Mercola
April 27, 2007
“I have received dozens of requests to promote a response to
the FDA Guidance for Complementary and Alternative Medicine Products issued by
the FDA in February 2007. There have also been many people posting about this on
Vital Votes. It has never been my intention to cry wolf and encourage
response to any government initiative unless I was convinced it warranted
it. So, I invested in a legal consultation and paid one of the top FDA
Washington DC lawyers $500 an hour to review the initiative and provide his
impression of the proposal. My take is that this proposal does not warrant a
response. The primary reason for this? The Guidance does not create any new
regulations; rather it’s an explanation of how the FDA applies the existing
regulations. The Guidance explains the differences between foods, food
additives, dietary supplements and drugs, and it explains how the same item may
be considered a food, a dietary supplement, or a drug depending on the labeling
and claims made. Meanwhile, the Guidance does NOT prevent access to
CAM providers, nor does it prevent the use of supplements/herbs by medical
professionals in their practice. It also will not directly impact
consumers/patients or prevent doctors from recommending the use of healthy foods
to patients. This is not meant to minimize any of the underhanded dealings
going on at the FDA (like the fact that the majority of funding for the FDA
comes from the very companies that it is seeking to monitor and evaluate), just
put our efforts where they’re most needed.”
6. INFLAMMATION, ACIDITY
& FIBRO TREATMENTS
From a
reader--
"I flipped over the last newsletter
www.fms-help.com/041807.htm - the
brain cell death info. I have always counted on my spirit to keep me
upright with the pain, and after getting my brain scanned and finding nothing
wrong I was confident the dysfunction was not permanent..
Reading
the
drugs
may be the cause cell death was a blessing...I've always been more afraid
of the drugs than of the fibro.
I live with frustration
of those who would like to help me with a simple solution, pills... now
I can tell all those helpful souls I have a good reason for resisting
meds.
I no longer have health insurance so experimenting with
treatments isn't an option. But I watch a friend with fibro go to a pain
specialist and tries everything from electrodes, shots, prescriptions,
herbs, diets, etc.
and while she good moments, the fibro finds its way
around every treatment in a few day so I dont feel bad that I cant go to the
doc....
But then inflammation IS a known cause of brain cell
death and that is still something to think about...
Some people take asprin
to protect the brain from inflammation
(althought some fibro diets refuse
asprin.. Dr Amand.)
In that view of consideration, there is a book called
The Anti-Inflammatory Diet.. an other one called
Eat Papayas Naked..
both geared to reducing acidity that
causes inflammation and enviroments that cancer thrive in.. candida and a host
of other problems.
Speaking of acidity.. sugar becomes
acid.
I stopped sugar and caffiene few
months ago (after years of resisting this suggestion) and found my overall
inflammation reduced so much that some days I wonder if I really have anything
but a dietary problem .. (however I still hurt in spots , get hurt
easily.. and nerve pain gets me whenever I do much of anything)
The idea
of stopping sugar seemed overwhelming, actually impossible - but after a
few days it was easy to choose the multi grain roll instead of the pastry ...I
am pretty proud of this change in my diet. I like saying, does it have
sugar... ah, no thanks.
Caffiene turned out tougher to give up
altogether.. I still have a cup at least once a week for the treat of the
energy..
Giving up caffiene used to make a HUGE difference in pain spots but
now it takes away a general feeling of rust in my muscles when I first move out
of any position but the general pain remains the same. After 20 years, I
never had a regular MD doctor tell me to quit either coffee or
sugar...Never......hmmm."
[This reader
makes a lot of good points. I too am a self-pay patient, except for
hospitalization--and thank God I've been able to stay out of there for twenty
years now, so my financial situation greatly limits what I can try for
tests, treatments, etc. However, even when I had insurance years ago, I
exhausted just about all options for FMS/CFIDS that doctors could give me,
except for finding a few meds here and there that helped some (such as sleep
meds). I think the "Fibro Virus" (is there
such a thing?) finds its way around just about every treatment, diet or
lifestyle change. I hear from people who think they are getting better,
but write back a few days/months/weeks/years to say they are bad again or worse
than ever. FMS/CFIDS seems unconquerable, but at least there are some
things we can do to help ourselves, which has been the subject of this
newsletter for the past 11 years. The only people who understand this
illness are those of us who have it! Also see my 100 Tips
for Coping with Fibromyalgia and Insomnia at www.fms-help.comm/tips.htm.]
7. ACUPUNCTURE, SLEEP &
LUNESTA
From a
reader--
"I've had intermittent insomnia since Jr HS. When the
CFS was bad, I needed sleep medication all the time. I've gradually been
able to shift to using it only when I need it with the help of my
acupuncturist. In fact, that was the first change I noticed when I
started acupuncture years ago...when I was able to fall asleep, I knew I'd been
deeply asleep. That gradually changed to being able to sleep
deeply for longer periods of time. I just use the Lunesta now if I have a
couple of nights' run of no sleep or I have a lot on my mind that won't let me
fall asleep."
8. SILVER COULD BE
DANGEROUS
I have used colloidal silver for
years (as needed) for various infections and problems, and it's worked
pretty well for me. However, here is a site warning about the use of
silver - http://www.cqs.com/silver.htm. So let's all beware and use things in moderation.
The Chinese use food as their medicine. Maybe we should try to do the
same, or as much as possible.
9. HAIR COLORING &
CHEMICAL SENSITIVITIES
From a
reader--
"I have multiple
chemical sensitivities (terribly!) and have just recently switched to all
natural cleaning products for my home, in addition to having used fragrance
& dye-free personal care products for 5 years. I color my hair at
home, then go to the salon and have highlights put in. I
bring my own
perfume & dye-free shampoo and conditioner to the salon--they don't
mind. The least potent over-the-counter brand I have found, that I can
actually tolerate (and I can't tolerate MUCH!) is "Garnier 100%
Color". (Available at Target, drugstores and Ulta). It does
not cover the grey as effectively as the "Garnier Nutrrisse", which I formerly
used, but I could not stand the smell of the Nutrisse and would get sick for
days from it. I can use the Garnier 100% color, without having a reaction to
fragrance or chemicals. It also doesn't make my scalp itch for days
afterwards. I hope I can continue usining it without problems...Just DON"T
use the little packet of conditioner inside the box. MAJOR TOXIC PERFUME
SMELL."
10.
E.V.O.O.
From my sister-in-law (who has a
Ph.D. in virology)--
"Yes, olive oil and
other monounsaturates are the oil of choice among dieticians etc. because of
their antioxidant content. Aside from cancer reduction, they reduce LDL and
raise HDL levels. This means they are helpful in treating and above all
preventing cardiovascular disease. Avoid trans fats, the fats used in
processed food. These are inflammatory, which is especially important for people
with immune problems. Avoid processed food. You should be eating whole,
ideally organic foods, most importantly whole grains and vegetables; your oils
should be oils, no fat (solid at room temp.), particularly
monounsaturates."
My sister-in-law also included
this Info from the net--
"Extra-virgin olive
oil is another interesting cancer fighter. It is what we call a monounsaturated
oil, meaning it will not go rancid. You can cook with it, but I would use
coconut oil instead. If you do use it, you need to add turmeric to the oil to
keep it from being damaged by the heat. A number of studies have shown that
extra-virgin olive oil prevents cancer in both laboratory animals and
people. People living on the island of Crete consume great quantities
of the stuff, and shockingly, despite being one of the heaviest-smoking
populations in Europe, they have one of the lowest lung cancer rates. The oil
contains a number of cancer-inhibiting flavonoids, as well as oleic oils. A
recent study found that extra-virgin olive oil not only prevented new cancers
but could also be used to fight those that had already developed it. Researchers
found that the principle fat in olive oil, oleic acid, inhibited a gene
(Her-2/neu) known to make some breast cancers extremely aggressive. Oncologists
use a drug called Herceptin to do the same thing, but it produces a
significant number of complications. They also found that the oleic acid, when
combined with even a small dose of Herceptin, could dramatically suppress this
aggressive gene. Extra-virgin olive oil contains more of this oil than almost
any other substance."
11.
I.Q.
From a reader who responds to a
comment in a recent newsletter that stated: "Once being Mensa qualified to now
feeling l can't learn my own phone number"--
"I
took an online I.Q. test a few years ago and scored fairly high. I even
took the test twice and came very close to the same score. I recently
repeated this same test (about two months ago), and my score decreased about 7
points. I blamed my medication (ativan), but now I'm starting to wonder if
CF/fibro could be the culprit?"
12. NOT
EVERYTHING IS RELATED TO FIBRO
Response from a friend of a newsletter
reader--
"I see people talking about things that
don't help, or may not help everyone or may even be bad for some people, but
maybe you could reply next time regarding the fact that not everything is
related to fibromyalgia. For example, I think I told you about this
gene from my mother's side that affects how we metabolize B vitamins, and that
when she was paralyzed from the flu when I was very young (about 7, I think),
her treating doctor (not from the U.S.) prescribed B-12 injections (with
something else, which you had reminded me of), which she has been on since then,
most of her life, until one doctor discontinued them, and she became very, very
ill. They did some sort of test, and found that she has a
gene (inherited from the maternal side) which adversely affects the way her
body/central nervous system metabolizes B vitamins, especially B-12. So even on
high doses, she always test very low normal or lower than normal for this in her
blood. I didn't think anything about it until I
started on the shots...I felt a great improvement. And it turns out that the
level of B-12 in my blood is below normal or just at the lowest of normal
without the shots, and even with the injections has never gotten to even
mid-normal. On the other hand, I don't do them as often as I should. But
there are genetic things that have nothing to do with fibromyalgia, and
I think sometimes people forget about that. I think I
read somewhere something like, 'Just because you have fibromyalgia does not
mean you can't also have other health problems.'"
13.
PROZAC
From a reader--
"Regarding Prozac, I am living a much happier life
while taking it. I used to get angry and depressed over every
little thing. Also, it has been a life saver for my daughter,
literally. People need to realize that those persons who killed others or
themselves after starting on antidepressants were depressed to begin with.
In some of those cases, they weren't on medication long enough to get relief
from their symptoms yet. It can take 4 to 6 weeks to feel the full
effect. They should also keep in contact with their doctor or
counselor. Please don't let people tell you that antidepressants kill,
until you've heard how many lives were saved because of them."
[Having been on Lexapro for a year
after my dad's death www.fms-help.com/eulogy.htm, I know that antidepressants can be a blessing. I was not
able to function and was completely exhausted physically, mentally and
spiritually from all that had happened in the last months of his life. A
kind friend finally took me to her doctor who prescribed Lexapro. My
husband called these my "numbing pills." I was able to talk about my dad
without crying all the time. Eventually, with enough time, I was able to
get off Lexapro. Now I use Omega Blue (capsules) and a few essential oils
that help me emotionally and with relaxation.]
14. SLEEP AT THE FLIP OF A
SWITCH
From a
reader--
"Researchers at the University
of
Wisconsin-Madison have found a way
to stimulate the slow waves
typical
of deep sleep by the use of
transcranial magnetic
stimulation
(TMS) to send a harmless magnetic
signal through the skulls
of
sleeping..."
http://physorg.com/news97172057.html
15. NATIONALITY & FMS
A few years ago, I was in a group of
three women interviewed for a TV segment on fibromyalgia. Interestingly,
we were Caucasian, Asian (me), and African-American. One thing I mentioned
to the interviewer was that we all had the same symptoms despite our differing
ethnic backgrounds. This remark did not make it to the broadcast, but I
thought it was insightful. During the past 11 years of having an FMS/CFIDS website at www.fms-help.com, I have heard from people on
every continent except the North and South Poles! These FMS/CFIDS
sufferers have differing cultures, lifestyles, diets and genetics--yet they all
have identical symptoms. Most who write to me are women, there are many
men as well - see my men's page at www.fms-help.com/men.htm. FMS/CFIDS is indeed an "equal opportunity"
illness!
16.
DISABILITY
From a
reader--
"I
finally have to admit I have a disability. It is so frustrating
though because I only see I am tired. I don't see I have no focus.
So I think I am ok but I am not. I have tried diet, I have tried vitamin
pills, I have tried and tried and tried web-specials and other medications to
sharpen focus and nothing works. My annual review suffered because of the
lack of focus and while everyone says I have a tremendously great work attitude
they cannot work with me because they are afraid they will need to redo whatever
I have done. Did that ever happen to you and if so how does one deal (a)
with a loss of self-esteem from comments like this, (b) with the grieving of
things I used to do easily, (c) with finding the inner strength to take this all
with a grain of salt and keep on keeping on? It is just soooooo
hard. Any thoughts?"
[Your situation sounds soooooo
familiar! Been there, done that. It hurts, it's awful. If you
want to read an interview about my early days with FMS, see www.fms-help.com/interview.htm. Did a lot of grieving then.
I have a lot
of consoling and supportive pages on my site - look in the yellow box on the
left at www.fms-help.com. There are sooo many of us with this same situation.
It is
shocking to us when our minds are not as sharp as they used to be - I remember
trying to study for a course and having to read the same information over and
over. It just wouldn't sink in, yet I was an honors graduate from UCLA.
Check out this site too http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html.]
17. FLOUR
From a reader--
"I am now trying to wean (hah) myself off flour. Wish me luck.
It is my main comfort food and there seems to be evidence tying it to fibro
fogginess and intestinal issues. My first thought was to just have
tortillas or matzoh I can because I figure those are yeast free but sadly
they still have flour and I need to give this a decent trial."
[Years ago I had a dear friend who was
diagnosed with FMS. Then the docs changed her diagnosis to RA, since she
had red, swollen joints. But it turned out to be gluten intolerance
(celiac disease), which her husband discovered on the net. She went on a
gluten-free diet and became painfully thin, but I think she felt better.
She used a gluten-free cookbook.]
18. CURES FOR
FMS/CFIDS
Recently two thoughtful newsletter readers sent
me lengthy e-books with success stories of people cured from fibromyalgia and
chronic fatigue syndrome. If I learn anything from these books that isn't
already in my newsletters (visit the archives at www.fms-help.com/newsletters.htm to
search by topic), I'll let you know. Having had FMS/CFIDS since 1982, I
think I've heard of everything. A list of things I currently use is at www.fms-help.com/what.htm.
19.
RASH
"I am having a bad flare - I have not hurt this bad in about 2 years.
I have had pain in my lower back for the past 3 days and in my elbows. I
woke up yesterday morning with the worst headache (sinus) and could not get rid
of it till late last night. Also, I have this weird rash
(red blotches) on my left leg. It is only in certain areas below the
knee: behind my knee, on my calf and ankle, and now today I
noticed I have some on my right leg, behind my knee. It really itches
- I have tried everything to get rid of this rash, and nothing has
worked. Does anyone have any suggestions? I do not want to go to the
doctor, because I can't take off from work. I would appreciate the
advice."
20. FREE PAIN RELIEF
SAMPLE
Dear
friends and family members who have any kind of pain,
Great news. The
company who manufactures the new pain relief cream ALCiS has sent me
over 100 samples of their product to help support my cause to
help others find efffective pain relief for their ailments. Here is some info on the
product:
ALCiS is a
patented liposome delivery system that is advanced, innovative technology. ALCiS
Daily Relief contains patented microscopic "envelopes", known as liposomes,
which deliver our key nutrients and active ingrediants for pain relief. These
liposomes penetrate your skin layers quickly and deeply, providing long lasting
relief without skin irritation. ALCiS Daily Relief delivers noticeable relief
from aches and pains in as little as 5 minutes. It is engineered therapy for
muscles and joints. Natural scent, no strong smell with irritation like other
competitors.
Available only at: 866-ALCiS-iS or www.ALCiS.com - More info on
website!
I've been using this product for almost 2 months now and
it is AMAZING!! The relief for me is not within 5 minutes because my
pain is so bad BUT definetly after 20 minutes, I can feel a noticed difference
in my pain levels. It's easy to appy, non-greasy and smoothes your skin -
doesn't stay sticky or greasy like other creams do and there's barely an odor.
Just massage a small amount into affected area and wait at least 20 minutes.
This is also a product that works better over time. So after a week of using it,
it was working better and faster. I use it on specific trigger points, muscle
knots and areas of great pain like my neck, knees, shoulders and anything else
that is hurting excruciatingly! I believe in this therapy and I highly recommend
anyone who is in pain to at least give it a chance.
I have
plenty of samples to help everyone + your friends and family to try to product
and make up your own mind. ALCiS offers different product sizes and
tubes for sale. I have discount coupons that I will include with your request,
as well as a brochure explaining and detailing everything you want to know about
the product. They have a money back garentee and they are willing to give me a
group discount, if in the near future, a bunch of us would like to order from
the company (which I plan to), it'll be cheaper to do that through me.
The samples are small enough to fit in your pocket, purse, drug bag,
toiletry kit, etc. The are 5 ml each and I can cover all of my painful places
with one packet, sometimes less than a packet. There is no real limitation for
use, they recommend up to 3-4 times per day as needed.
So if you'd like
to try it, please let me know how many sample packs you want and send me a SASE
medium or large manilla envelope to my address below with your order amount. OR
you can pick up your samples at my house in Alameda - I would request a day that
you're available to swing by and I would leave a bag or envelope on my gate with
your name on it. I'm not asking for donations at this time for the product but
I'm instead going to just send you the samples if you pay for the postage.
One packet contains 3 samples + the brochure and discount form. So one
.41 cent stamp (first class postage changes from .39 cents in May) per sample
should be sufficient. I've already weighed an example and it only required one
stamp. You can also just send a business sized envelope to me and I could
probably fit everything into it just fine. If you want two samples, then put a
.41 cent stamp and a postcard stamp on it, or use two .41 cent stamps -
whichever is easiest for you. Please send request and SASE to the address below.
And if, after you try the product, you'd like to continue using it, just
ask me for more samples and send another SASE! Thank you for listening and
I really hope that everyone who wants to, can try this product out because it is
making the world a better place for me at this time! I'm very thankful to the
company for helping us all out and donating their product to my cause.
My mailing address is:
Whitney K Walker
433 Cola
Ballena
Alameda, CA 94501
infinite242@gmail.com
21. FOOD
INTOLERANCES
22. INSOMNIA DURING
PREGNANCY
"Just found out that I'm about 5 1/2 weeks pregnant!!!! Have
any of your past newsletters had any tips on dealing with insomnia
during pregnancy? The OB said it's okay if I stay on
Ambien, 5 mg, because I absolutely cannot sleep without some
sort of sleeping pill and if I don't sleep well, my FMS flares up really, really
badly. But over the past few months the Ambien isn't really working
anymore (I think my body is getting tolerant to it)...it only puts me to sleep
for about 5 hours, then I'm awake the rest of the night.....so I was taking Soma
with it...which was great, that let me sleep great.....but my OB says
it's really not good to take Soma when you're pregnant. I
haven't slept much in the past 2 nights and my FMS is already starting to get
bad. My muscles are starting to ache more, my memory is starting to go,
and I can't come up with words very easily when I speak. I told the OB,
but she said basically I just have to deal with it, at least until the first
trimester is over. UGH!! Any of your readers have any
tips?"
Well, that's all for this
newsletter. I hope you have found some topics of interest.
Be sure to visit my homepage at www.fms-help.com for many
fascinating articles on FMS/CFIDS - look in the yellow box on the
left.
Dominie Soo Bush
Return 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.