DOM'S
NEWSLETTER
April 11,
2007
A compassionate newsletter
for people with fibromyalgia and chronic fatigue syndrome.
There are 16 topics below in PURPLE. My comments are in TEAL. Scroll down to see if any
topics interest you. I enjoy sharing information which may be helpful to
others with FMS/CFIDS. - Dominie
1. HOW TO FIND INFO ON MY
SITE
I get lots of email from
readers looking for information they read in a past newsletter or on my
site. Some readers are
adept at finding info online, while others need the steps listed for
them. Here's how to locate topics on my site (for example,
Lunesta)--
1. Go to my homepage at
www.fms-help.com and USE THE GOOGLE SEARCH BOX near the top of the
page. (I also have search boxes throughout the site, so you can use any of
those if you see one handy.)
2. Type in your topic and hit
SEARCH. It will bring up a list of pages where the topic is
mentioned.
3. Click on one of the pages listed
and hit ALT-F to bring up the FIND box for that page.
4. Type your topic in the FIND
box. It will LOCATE AND HIGHLIGHT that word on the page. Keep
clicking NEXT until you get to the section you want to read.
2. SKIN CRAWLING
SENSATION
From a
reader--
"PLEASE CAN ANYONE GIVE ME SOME ENCOURAGEMENT. I HAVE HAD SOME
WEIRD SYMPTOMS OVER THE 20 YEARS I HAVE BEEN AFFLICTED WITH FIBRO BUT THIS ONE
IS A CONCERN. MY FACE FEELS LIKE THINGS ARE CRAWLING UNDER THE
SKIN AND PARTS OF MY FACE FEEL NUMB. ITS BEEN LIKE THAT FOR NEARLY A
WEEK NOW. ANYONE ELSE HAD THIS AND WHAT HELPED YOU. IT WOULD APPEAR TO BE ALL
THE NERVE ENDINGS WHICH ARE GIVING THIS SENSATION. I HAVE HAD ENOUGH .....THE
AMOUNT OF BIZARRE SYMPTOMS I HAVE HAD OVER THE LAST 7 MONTHS
ARE ENOUGH TO SEND A PERSON OVER THE EDGE."
3. ACUPUNCTURE
HELPED FIBRO PAIN
From a reader--
"When I received your newsletter this morning it reminded me
that I wanted to write to you about my latest SUCCESSFUL venture. I hate
needles and would not have pursued acupuncture on my own...however, through us
not being able to coordinate free air miles, vacation club, etc., and "settling"
for a last-minute cheapest fare cruise out of our home port, God was bringing me
a gift. An acupuncturist/chiropractor from Brazil was
employed by the Cruise Lines to do acupuncture in the spa. My husband and
I attended a short "info seminar". I immediately felt comfortable with
Fernanda. I signed up for an initial treatment. Apprehension about
the pain of needles soon gave way to interest as she demonstrated the
process...a plastic sheath is pressed against the point of insertion, then a
tiny needle is "tapped" into place. Mostly what I felt was the
plastic. After just the FIRST TREATMENT, at 4 pm, I was energetic,
surprisingly free of much pain, and ready to go to dinner and the show (after I
had already warned my husband that I would be too tired for the onboard
show). I had another treatment on day two, at 5 pm, and another on
day three, at 6 pm. Both nights I was energetic and ready to go til 9 -
10, about 4-5 hours after my usual "time to be horizontal and take pain meds"
time. REMARKABLY, I soon realized that the 'weird' feeling I had was LACK
OF PAIN - the overall, throughout your entire being, 'God, I don't want to get
up and face this another day' pain. IT IS GONE. I do still have
muscle spasms from exertion, I do still get tired (not as much, not having to
use energy to deal with as much pain), but the entire, permeating your whole
self pain is still gone! I don't know how long this will last
and when I will need to find a local acupuncturist, but God gave me a
comfortable situation, an expert practitioner, and a whole new lease on
life."
4. SCIENTISTS PINPOINT GENE
BEHIND AUTOIMMUNE ILLNESSES
From a
reader--
5. ALPHA LIPOIC ACID &
SLEEP
From a
reader--
"I want you to know about something I have recently been using
(both my husband and myself). It is called
Alpha Lipoic
Acid. It was recommended to my husband by the healthfood
specialist for neuropothy from the diabetes he's had for 54 years. It's
been known to be very helpful for restoring sensation from nerve damage. I
went online and read several articles concerning this supplement and was
impressed with what I read. My husband and I both began taking 2 100mg.
capsules daily. After finishing the first bottle, we increased the dosages
up to 300mg. tablets daily and
there has been a dramatic change for me
in the ability to sleep at nights. I can only attribute it to
that as otherwise I have done nothing differently. Last night is the first
night I actually
slept the entire night through and remember
dreaming. I'm hoping that it will help with the pain of Lupus and
Firbromyalgia. I will keep you informed about this if there continues to
be an improvement. Here is a short quote from an article that
originally appeared in the July 1996 issue of The Nutrition Reporter™
newsletter: Alpha-Lipoic acid: Quite Possibly the 'Universal'
Antioxidant - by Jack Challem: 'Alpha-lipoic acid may very well join
the ranks of vitamins C and E as part of your first-line of defense against free
radicals.
Discovered in 1951, it serves as a coenzyme in the Krebs cycle
and in the production of cellular energy. In the late 1980s, researchers
realized that alpha-lipoic acid had been overlooked as a powerful
antioxidant.' Also see
http://www.berkeley.edu/news/media/releases/96legacy/releases.96/14316.html and
http://www.amazon.com/Alpha-Lipoic-Acid-Breakthrough-Antioxidant/dp/0761514570."
6. GLYCONUTRIENTS
& ALOE VERA JUICE
Reader #1--
"I am getting reflexology done by a woman I met two years ago
who almost died, and scratched and clawed her way back to health - which
is
still ongoing. Anyway she told me to start drinking aloe vera juice and
basically that is what all this glyco products are made from, except the aloe
vera juice is much cheaper. I will write more on this for you later (gotta hit
the bed) but suffice to say I think it is making a big difference."
[I tried aloe vera juice years ago
without any noticeable results, but one thing I've learned in all my years as a
fibro guinea pig is that different things help different people - and at
different times. We are a complex bunch! The bottom line
is that each of us has to find the meds and supplements that help us
individually. And how I wish there were ONE "magic bullet" that cured
FMS/CFIDS!]
Reader #2--
7. ANOTHER WORK FROM HOME
IDEA
Alpine Access is now taking applications from
the Cleveland area. They pay $10 per hour.
8. LUNESTA
From a
reader--
"I have tried Lunesta and LOVED the way it worked so
well. NO hangover. BUT for nearly 30 hours, even my precious
water tasted horrible! I can tolerate the food tasting bad because I don't
care too much for food....but water is the only thing I have that I can enjoy
and receive some help from; and to have it become so revolting for me to
drink....it wasn't worth it for me. But I loved the way it worked!
It was wonderful. An entire night of sleep - wake up at the 7th or 8th
hour...feeling refreshed with no sunken eyes and my skin looking like it had
also slept. But everything - even my saliva tastes and FEELS like
metal. UGH!"
9. DR.
TEITELBAUM
You’re invited to
a FREE online seminar:
"Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia --
Exciting New Research"
Presented by: Jacob Teitelbaum, M.D.
DATE: Thursday,
April 26 , 2007
TIME: 8 p.m.
Central Daylight Time (6 p.m. Pacific Daylight Time / 9 p.m Eastern
Daylight Time )
Space is limited, so REGISTER today!
Event Description
Finally! There is effective treatment for chronic
fatigue, pain, and fibromyalgia. Dr. Teitelbaum discusses these
conditions in detail
and how those suffering from them can now reclaim their
vitality and be pain free! Dr. Teitelbaum will also summarize his latest
study
on the effects of a natural 5-carbon sugar called
D-ribose. In this study, he found that 2/3 of CFS patients
showed improvement after
only 12 days of therapy. IMPORTANT NOTE: This seminar is
a
web-based audio broadcast. You need internet access and
working speakers and sound cards in order to view and listen to the
presentation on your computer. This event is sponsored by
Bioenergy Life Science, Inc. Please contact Penny Portner
at
onlineevents@bioenergy.com
or 763.746.3936 if you have any questions about this event or the
registration process. Visit
www.bioenergy.com for more information on
ribose.
For more events and information
see
www.endfatigue.com.
10. CFS SYMPTOM
CHECKLIST
From a
reader--
11. DISABILITY
TIP
From a
reader--
Scott E. Davis,
Disability Attorney: "SSA Regulations
permit your own doctor/ psychiatrist/psychologist to
perform the examination? The advantage in a CFS case is obvious. Hopefully,
your doctor is a specialist and knows how disabling CFS can be. Hopefully, s/he
knows you better than any other doctor and supports your claim for disability.
Thus, your claim is much stronger when your doctor performs the examination,
confirms the diagnosis and then concludes your symptoms and limitations are so
severe they are disabling. Your doctor's opinion is persuasive because your
symptoms and limitations are well documented. Moreover, you have avoided the
admission of contrary evidence (SSA's doctor) that could be used to deny your
claim. Using this strategy is usually only effective (and permitted) if you have
followed Steps 1, 2 & 3 of this article. Of course, knowing how and when to
utilize this strategy is critical."
12. CHRONIC NEUROIMMUNE DISEASES
SITE
From a reader--
[Also many interesting links from this page
about FMS/CFIDS symptoms, etc.]
13. DR. CHENEY
From a reader--
"Dr. Cheney charges $8,000 for a two day visit and $10 per minute extra when he personally sees you. As well, what he prescribes for treatment and drugs and such are very expensive. Also, he has a years waiting list to see him. (This does not include accommodations, food, air fare etc..) I do not have any money and can't afford his services nor the expensive drugs. He expressly said he 'will not share any of his knowledge or treatments with any other doctor.' You would think he'd want to help others."
14. "I COULDN'T SLEEP"
My article about having devastating insomnia that resulted in fibromyalgia and chronic fatigue syndrome has been published in "Challenger," an inspirational magazine similar to Guideposts. I am very happy that this information is being circulated widely (wow....and just in time for Fibromyalgia Awareness Day on May 12!) So many people with FMS/CFIDS feel very alone and misunderstood in their circumstances. It is not too late to request a copy of the magazine. I don't know how much longer the supply will last, but if you want a copy of this issue, please email me at dombush@bellsouth.net with your NAME and COMPLETE MAILING ADDRESS. Be sure everything is spelled correctly (you know how fibro fog can be....) Chinese Christian Mission will mail the magazine in 2-4 weeks. Look for a white, 7"x10" envelope. It can be sent anywhere in the world FREE OF CHARGE.
15.
EFFEXOR
From a
reader--
"I tried to come off of Effexor XR....oh my gosh, that was
awful!!! I tapered down slowly taking out the beads and all, but still,
even though I came down super slow, when I got down to half the 37.5 tablet, my
FMS totally flared up...LOTS of overall, diffuse pain.... they tried me on
Wellbutrin and Zoloft, but Wellbutrin made sleep even less than normal and
Zoloft gave me a massive headache... so I'm back on Effexor XR. It's taken
a week to feel somewhat back to normal...I guess it's taken that long to build
back up my serotonin and norepinephrine levels."
16. PERSONAL COMMENTS FROM
DOM
If you use any meds or supplements that
are actually helping your FMS/CFIDS sleep disorder, fatigue, pain, depression,
IBS, or other symptoms, please write me at dombush@bellsouth.net. I am always interested in what's helping
others. A list of things I currently use is at www.fms-help.com/what.htm.
For those who need a
laugh today, I got this from a reader:
"I have silly
'brain fog' story. I recently found a banana I put in my glove compartment
a few months ago. I was going to eat it for breakfast when I got to
work. I discovered it the other day when I updated my insurance
information. It looked like it had been sitting in a coal mine for years.
I couldn't stop laughing at myself! I can't remember anything
anymore."
Well, it's
better to laugh than to cry! The other day I ate a whole
meal and did not remember. My husband said it was from taking
ambien. I take 5 mg at night to sleep. This is not much, but it does
cause some amnesia. Let's all be careful with our meds! Look what
happened to Anna Nicole! Here's a place you can check your meds for drug interactions: www.fms-help.com/meds.htm.
Love and
prayers,
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.