August 8, 2006
Dear Fibro Friends
- Below are 10 interesting topics that caught my attention recently. Would
you please read my comments after #10 below? I have a question for my
readers and would appreciate any feedback on this subject. Sorry
that I am not able to answer emails personally, but I do read what you send
me! Thanks so much! - Dominie dombush@bellsouth.net
1. NATURAL CURES AT EARTHCLINIC.COM
From a
reader--
"Check out
http://www.earthclinic.com/index.html - it has a lot
of interesting info for us fibro sufferers. I'd like to try some... Plus, it has
a survey of fibromyalgia sufferers to eventually get loads of data to
crossreference towards finding reasons & potential
cures."
2. PAIN
"ON/OFF" SWITCH DISCOVERED
Scientists Spot Chronic Pain 'On/Off' Switch
FRIDAY, July 28 (HealthDay News) -- "U.S. researchers say they've identified
a protein in nerve cells that acts as a kind of gatekeeper for chronic
pain. This enzyme, called protein kinase G (PKG), is turned on and
activated in response to injury or inflammation. Once activated, PKG triggers
other processes that generate pain messages that are sent to the brain. As long
as PKG is switched on, pain persists. Turning PKG off relieves pain.
"We're very optimistic that this discovery and our continued research will
ultimately lead to a novel approach to pain relief for the millions suffering
from chronic pain," researcher Richard Ambron, professor of cell biology at
Columbia University Medical Center in New York City, said in a prepared
statement. The study was published online in the journal Neuroscience and
was expected to be in the August print issue. Ambron and his colleague
Ying-Ju Sung, an assistant professor of cell biology, have applied for a patent
for the pathway that turns on PKG, as well as several molecules that inhibit it.
They hope to develop a new class of drugs that target PKG in order to treat
chronic pain."
[FROM DOMINIE: See my pain page at
www.fms-help.com/pain.htm and misery scale at www.fms-help.com/misery.htm.]
3.
MYSTERY ILLNESS - ALL IN THE MIND?
This was sent to me by a fibro
friend with the comment: "Back to the Dark
Ages!"--
"The following article (link) ran in my local
Minneapolis, MN newspaper
today. I feel as if the rug has been pulled
out from under me! I am
finally educating my friends and family to my
fibromyalgia and what it means
for me to be so disabled. I was
receiving some glitter of understanding
from them. Then THIS!"
http://www.startribune.com/789/story/569958.html
4. RENAME
CFS!
Article by Rich Carson - from
ProHealth.com and the immunesupport.com newsletter--
Sometimes I hear people refer to Chronic Fatigue Syndrome as "chronic
fatigue," and that always bothers me. Why? Because calling a serious, complex,
debilitating disease "chronic fatigue" is inaccurate and simply wrong. It
patronizes patients and indicates a lack of knowledge, a lack of awareness about
the disease, and a lack of sensitivity to the patients who suffer from it.
According to the CDC, 10 percent to 25 percent of all patients who visit
general practitioners in the United States complain of prolonged fatigue. Do
they have Chronic Fatigue Syndrome? Of course not! Many diseases cause fatigue.
Lots of things cause chronic fatigue. Fatigue is a normal part of life for many.
But Chronic Fatigue Syndrome is special. It is a serious disease - real
and complex - and it deserves its own special name.
Nobody is justified in calling CFS by the name of one of its symptoms. We
don't call cancer, AIDS, Addison's, Parkinson's, MS, or hepatitis (etc.) chronic
fatigue. And why not? Those diseases frequently cause chronic fatigue. I'll tell
you why: The government has not adopted a suitable name for the disease, and
patients tolerate it. We missed the boat years ago by succumbing to the medical
establishment's inability to come up with a decent name.
Does your doctor call CFS "chronic fatigue"? If so, you are dealing with a
physician who probably does not know enough about the disease to be treating
you. You deserve better - you deserve a doctor who specializes in treating
Chronic Fatigue Syndrome, not chronic fatigue. Reminds me of the "old
days" when some patients and physicians called CFS "Epstein Barr." CFS is not,
and has never been, "Epstein Barr." Not, at least, to anyone who knows about the
disease. Sometimes CFS involves an active Epstein Barr infection, but this is
usually not the case. I used to tell patients that if their doctor calls CFS
"Epstein Barr" then they needed to find a new doctor. The same is true for
"chronic fatigue."
The best name I have seen so far is Myalgic
encephalomyelitis, the name most commonly used in Europe. It is not perfect, but
it is better than Chronic Fatigue Syndrome - and at least it sounds like a real
disease. The next best name is "Chronic Fatigue Immune Dysfunction Syndrome"
(CFIDS) - a name that at least addresses the immune system part of the syndrome
(but not the digestive, nervous, endocrine, muscle, and skeletal systems).
The name Chronic Fatigue Syndrome needs to be changed, and that change has to
start with us. Are you the kind of person who likes to get involved in issues
like this - to give our disease a legitimate name? If so, write to us and let's
talk. Patients need to work together to get the respect we deserve.
I wish you a cool, happy, and healthy summer.
Your fellow Chronic Fatigue Syndrome patient,
Rich Carson
Founder and CFS and Fibromyalgia fundraiser
[FROM
DOMINIE: The illness called Chronic Fatigue Syndrome needs to be renamed
because it's not about "tired people!" Everyone gets tired. My
CFS story is at www.fms-help.com/fatigue.htm. Below is
an article about why the name of this illness needs to be
changed--and I agree!]
5. READER'S
QUESTION
"I am having
spasms in groin, mainly the right
groin and that leaves me with terrible soreness for a couple days. Seems
to be a cycle I could live without. Any one have this problem? Any
solution?" - reply to Marilyn
bobmar3@sympatico.ca
[FROM DOMINIE: Please reply to
Marilyn directly. Thanks!]
6. NEW BOOK:
ENCOUNTERS WITH THE INVISIBLE
|
From Marly Silverman of PANDORA-- |
|
Back on April as part of our awareness events I sent out
a letter to our community highlighting the wonderful book that Dorothy
Wall wroteabout her CFS journey. The book is titled Encounters with the
Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome.
Dorothy Wall is coauthor of Finding Your Writer's Voice: A Guide to
Creative Fiction (St. Martin's Press), and has taught creative writing at
San Francisco State University, U.C. Berkeley Extension and Napa Valley
College. Her poems and essays have appeared in such venues as the Bellevue
Literary Review, Sonora Review, Under the Sun, Witness and Cimarron
Review. She works as a writing consultant in Berkeley, California.
Recently, I received an e-mail from Dorothy telling me that since we
released the awareness literary campaign her publisher communicated that
they had a considerable spike for the period of 5-8 weeks on sales
totaling more than 1,000 books. I am proud to say that we made a
significant impact by endorsing this amazing book! Over 3, 500 books have
been sold so far!
Walls' book is a must reading for a CFS patient and caregivers! You can
now purchase this great book on on our web site through Amazon.Com. Let's
make this book a bestseller! |
|
|
7. MILITARY EXPERIENCE
"I will write as a
short narrative of my personal history with CFS and Fibro and how the
vaccines affected my health and how the military continues to deny veterans the
benefits they deserve as a result of their receipt of
vaccines."
[FROM DOMINIE: Bob has been suffering since 1984 and asked any
veterans with these problems to contact him. His story will be on my site
shortly. As
long as I'm on this subject, I was in contact for many years with a dear man in
his 80's whose sleep disorder began when he entered the military--perhaps due to
vaccinations. He said, "If you think boot camp and 4 years in the military
is hard, try it without sleep!!!" This dear man has had nothing but health
problems ever since. Very late in his life, he was helped with his
insomnia by the immune powder, but his general health was bad. He told me
all choked up about how there had been a bad thunderstorm the previous night
and friends from his retirement condo were talking about it, but he
had not heard the storm at all. He realized then that HE HAD SLEPT THAT
NIGHT!!!!!!! Only those of us with chronic, debilitating insomnia can
understand the amazing miracle and JOY of precious sleep!!!! My
insomnia story is at www.fms-help.com/insomnia.htm.]
8. FAR INFRARED CLOTHING HELPS FMS
PAIN
From a fibro friend who says this helps
her--
9. INVASIVE
TILT TABLE TEST CAN DETECT DYSAUTONOMIA
From a reader--
"I know that there is a relationship between
the Autonomic Nervous System and Fibromyalgia because I have been diagnosed with
Dysautonomia for 19 years and Fibromyalgia for 5 years, CSF for about 9 years,
IBS for about 18 years, Anxiety Attacks for 18 years, and depression for 7 or 8,
yet all of the symptoms to each of these are interrelated and all began after a
severe infection of mononucleosis. It is much
easier for me to tell people that I have Dysautonomia and explain what that is
than to try to convince them that Fibromyalgia is real and that it is not a
psychiatric disorder. The good thing with Dysautonomia is that there is a
test for that, the Invasive tilt table test, where they put the arterial lines
and IV's in to accurately measure actual arterial blood pressure and heart rate,
not the regular tilt test that requires manual blood pressure and pulse readings
because the rapid shifts in theses levels can be missed, but not with the
constant arterial measurement. I had the in office tilt
test positive when I was 16, but not until I was 30 and had the Invasive and
actually had the documentation that this really was occurring in my body, did I
find physicians really willing to listen to me and take me seriously. What
I already know by researching myself, is that there is a strong correlation
between the endocrine system and the autonomic Nervous system........I keep
searching for some relationship that I can actually show proof to my doctors
that these systems are all involved and the level
that it is being controlled and regulated is above the areas that they are
testing, which actually is possibly Limbic System, hypothalmus and other areas
of the brain, rather than the thyroid gland, bladder, bowel, GI system,
etc."
10. CDC
TEACHING PEOPLE ABOUT CFS IN A TRAVELING EXHIBIT
From a reader--
"http://wcco.com/topstories/local_story_218211856.html - Many of you know that I, like
millions of other Americans, have CFIDS (Chronic Fatigue Immune Dysfunction
Syndrome) and Fibro (Fibromyalgia), two incredibly
misunderstood, debilitating and disabling illnesses. It is very
exciting that the CDC is mounting a traveling exhibit about CFIDS and Fibro,
starting at the Mall of America! I urge you to watch the (very short)
video, read the article, and pass this on!"
[FROM DOMINIE: I have
come to the same conclusion -- that CFIDS is caused by a virus. I have
info about this on my site in many places. For instance, see
www.fms-help.com/animal.htm, www.fms-help.com/stealth.htm, and www.fms-help.com/mycoplasma.htm to learn more. Hopefully one day there will be a
cure! Meanwhile, our own immune systems have to fight this. For a
list of things I use, see www.fms-help.com/what.htm. I
am not cured. But I am coping with the help of specific supplements
and meds. I work 3/4 days as a piano teacher, and I'm also a church
pianist. This is all I can manage besides household chores. The main
thing I can't do is travel - not even for 1 hour - without debilitating
fatigue. There's something about riding in a vehicle that overloads my
sensory input and after a very short time I have to recline the seat or have to
turn back for home. This prevents me from going anywhere. My life is
rich and full with manywonderful blessings - a great husband, terrific music
students, a loving church family, a new puppy to love and train at home - but I
am very limited geographically. Does anyone else have this
problem? I am curious. I have had to scale back my life waaaay back
from the many things I would like to do. Going to see my dear brother and
his family in Colorado is tops on my wish list. They always have to come
to Florida to see me, and it just doesn't seem fair. I've wondered about
FMS/CFIDS patients who are able to crisscross the country going to medical
conferences....how do they do that???!!]
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.
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