Importantly, each
year of FM was equivalent to 9.5 times the loss in
normal aging. This
loss of gray matter occurred
in several brain
regions related to memory, mood, and pain,
including the cingulate,
insular and medial frontal cortices. These
neuroanatomical changes in
FM patients provide
evidence of CNS involvement in this illness. In
particular,
FM appears to be
associated with an acceleration of age-
related volume loss in the
brain.
If you would like to receive
more information, please don't hesitate to
Sabrina G. Khan
Laboratory
Technician
University of Florida, Dept. of
Medicine
Div. of Rheumatology
Center for Musculoskeletal Pain
Research
1600 S.W. Archer Road, Room
G-056
Gainesville, FL
32610
(352) 265 - 8901
Wow. I sure hope this isn't
true because I need all the gray matter that I have!
Reader
1--
"Sorry Dom, it's
true... Punctuate lesions = holes in your
brain
ShortList of Tests from the Canadian
Consensus Document for M.E./CFS
Overviews of the Canadian Consensus Documents
for ME/CFS and FMS
Thanks! The stuff from your friend Jan in
the newsletter is awesome. I am building a
media links library that
includes her info along with stuff from Prof Nicholson.
I keep adding content from
additional medical experts nearly every day right now.
Reader 2--
"I HATE THIS...seems to be true for
me. I used to have perfect recall.... and a startling IQ.. I could do
anything. Now I have to apologize for not knowing what I am doing
or keeping things lined up in my mind....it's dreadful on the
self esteem to feel 'stupid when I am not...or am I now?"
Reader 3--
"I read your email. Right away I pulled
my MRI report, I had in 2005. The notation on Gray/White Matter
comments: rare vague punctate white matter lesions, especially
central midbrain. I did email the research dept. at
University of FL. I would love to know there is a reason, for the daily
pain associated with fibro. Maybe it is all in our
heads."
This is Dom
again. I just got this response from the UF study
people--
Dear Dominie,
Thank you
for your interest in the research study. We are very excited about the findings
and are looking forward to answer some questions. The study is currently ongoing
and involves three visits to our research lab at the University of Florida. We are investigating how you
process a pain sensation and the changes
and differences of brain structures and functions. I you
like more information or have any questions about our studies, please feel free
to contact us any time.
Susann Nagel
SR. Lab Tech
Musculoskeletal Pain Research
Lab
University of Florida
[Gainesville]
352-265-8901
Unfortunately, I can't travel more
than 25-30 miles without collapsing, so won't be able to participate. My
travel problem is really a brain problem that developed after I worked in
toxic mold in 2005 www.fms-help.com/mold.htm. I have been on a "short leash" ever
since.
8.
SLEEPYDUST.NET
From a
reader--
"This website has a
10-minute video for 'normals' about the CFS/FMS sufferers’
life. It’s a bit dramatic but makes excellent points about
the unpredictable, often debilitating aspects of ME/CFS/FMS and the possible
post-viral syndrome aspects of these conditions:
www.sleepydust.net."
9. COCONUT OIL
From a
reader--
"I have a friend who
works for St Petersburg Times newspaper here in FL. He told me about a man who
took an oil supplement to bring him back from brain "fog" it
was kind of like a lightning bolt that it occurred to me MAYBE it could help our
symptoms: the article is at
http://www.tampabay.com/news/aging/article879333.ece."
10.
CYMBALTA REJECTED IN EUROPE AS A FIBRO MED
European Agency Rejects Lilly Drug
for Fibromyalgia
"The European Medicines Agency has
recommended against approval of Eli Lilly and Co's Cymbalta
for treating the pain and fatigue condition
Fibromyalgia.
Recommendations by the agency's Committee for
Medicinal Products for Human Use are generally
adopted by the European Commission within a
couple of months.
Fibromyalgia is a mysterious ailment
characterized by chronic widespread pain that afflicts mostly
women. No medication has been approved in
Europe for the treatment of Fibromyalgia, according to
Lilly.
Cymbalta, which is approved in Europe for
treating depression, anxiety and other conditions, was
cleared by U.S. regulators in June for
Fibromyalgia. Pfizer Inc's Lyrica is also approved for
fibromyalgia in the United
States.
Cymbalta, which is known generically as
duloxetine, is one of Lilly's most important products. The
Indianapolis-based drug maker reported on
Thursday that Cymbalta sales jumped 40 percent in the
11.
DISTRACTION - THE BEST PAIN RELIEVER!
From www.Reaching-Out.info
newsletter--
The Most Powerful Pain Reliever Revealed
By Christina Lasich, MD
"What is the most powerful pain reliever?
Morphine? Oxycontin? Fentanyl? Oxymorphone? Methadone? Hydrocodone? Cymbalta?
Lyrica? Lidocaine? The answer is none of the above. None of these chemicals have
enough power to top this weapon against pain. The most powerful pain reliever is
not a chemical, a machine, or a potion. I will give you a hint. It starts with a
"D" and ends with an "N". Give up? Distraction. Yes, that's right; distraction
is the most powerful pain reliever in the world according the David Butler,
author of Explain Pain and world renowned expert. At the time, he was speaking
to a group of manual therapists and doctors. No one in this audience could guess
the answer. But, when he said, "Distraction is the most powerful pain reliever",
everyone else said, "Of course, brilliant!" Now, before you react to this
eye-opening information, imagine this: Your house is on fire, flames shooting
from most windows. All you can think about is poor, precious Mr. Kitty in the
house. So, you heroically run into the inferno to save your best friend in the
world, Mr. Kitty. Thankfully, you found him under the bed. Tucked under your
arm, Mr. Kitty is saved. As you run to safety, you fail to notice that you are
covered in 2nd degree burns until a firefighter comes to your aid. You do not
even notice the pain because all that matters at that moment is that Mr. Kitty
was saved from certain death. You are too distracted to notice the pain. Maybe
you have heard about other amazing pain stories that reveal the power of
distraction. Did you hear about the man who was alone and pinned by a boulder in
Utah a few years back? This man cut off his own arm with a Leatherman tool to
save his own life. Wow, that is some serious pain control. Shark bite survivors
also tell about their failure to notice any pain when they were trying to get
away. Distraction is the most powerful pain reliever because you have an
incredible drug cabinet in your brain. This drug cabinet is 60 times more
powerful than anything manmade (much to the dismay of the pharmaceutical
companies). You have a powerful built-in pain relieving system. That is
something to be proud of! Now, the question is: How can you use this knowledge
to deconstruct your pain? You do not have to be in a life-threatening situation
to unleash the power of distraction. Some relieve pain by participating in
hobbies. Others help those in need or volunteer to distract themselves. Some
people love new challenges and love to learn new things. With enough
distraction, you too may find the road to recovery, or at least pain relief. Be
brave because distraction truly can be the most powerful pain
reliever."
12.
AYURVEDIC APPROACH TO FMS/CFS
From a
reader--
"Like you, i am a
sufferer of chronic fatigue and fibromyalgia. I am a 41 year old single
mother of two young girls, ages 4 and 6 and i have been under the grips of
this illness since right before my pregnancy with the little one.
(sometimes i wonder if the pregnancy just allowed the CFS/fibro to fully take
hold!)
since my diagnosis, i have tried every
magic potion, doctor and "non"-doctor i could find locally in the d.c/maryland
area, then finally venturing out to michigan and massachusetts! my last
protocol was the most successful. in august, i performed something
called "panchakarma" a detoxification process used in ayurvedic medicine that
has been in practice for 5,000 years in india. i went for 9 days to a
place called the lancaster health center (also called maharishi vedic
center) in lancaster, mass. and by day 4, i honestly felt just like the
very forgotten old me! also, i was able to go off of every one of my
medications (including topamax, wellbutrin, lyrica, cymbalta, aciphex), which
for most, i was on the highest dosage possible! it truly was a
miracle!
Well, i came home from the center and
despite the fact that you are to wean yourself back into your life, i was
immediately confronted with my mother succumbing to her 12 year battle w/
breast cancer. after several weeks of decline then a few more weeks in
hospice, she passed in september. the strength that i had acquired
through the health center held me through her dying and subsequent death and
for several weeks afterwards. however, my immune system was weakened
from the stress and eventually i caught an awful virus that my girls brought
home from their little "petri-dish" schools, where i had a fever of 102-105
degrees lasting for a week (and they of course were fine after 48 hrs!!)
after that, i have rapidly declined, having to take round-the-clock pain
medication for daily migraines and severe body aches and pains.
my sleep is suffering terribly and my doc put me on ambien for the
time-being. my main "western" doctor tells me i am in a "flare-up" and
encourages me to stay off all of the meds i had stopped taking and to try and
just eke through w/ the pain meds and sleep medication for the time
being. he also encourages me to continue w/ the ayurvedic diet and
"lifestyle" ( ie: eating largest meal in the middle of the day, going to
bed by 10 p.m., not drinking anything cold, etc.) and meditation.
i must say that what i like about ayurveda
is that it is a 5,000 year old "science of life" that makes a lot of common
sense. their approach to chronic fatigue and fibromyalgia (and to any
"disease") is that it is simply an imbalance in the body which can be reversed
w/ proper diet, detoxification, specific daily routine and meditation.(it is
not a religious practice but rather a spiritual practice for people of all
religions!) unlike most docs i've seen, they believe that you can
free yourself of this illness (they see chronic fatigue as just another
symptom of fibro, not another illness altogether)...which is wonderful as it
gives us HOPE!!!!!! ayurvedic doctors believe that cfs/fibro
begins as a dysfunction in the digestive system, which causes larger than
normal molecules into the bloodstream (i'm sure you've heard of "leaky gut
syndrome"), that in turn poison your body, creating inflammation in the joints
and tissues. the toxins also start a multi-system failure, as the
imbalance greatens. the depression, increased sensitivity, headaches,
fatigue, insomnia, etc. are all functions of the toxins accumulating in the
body and preventing other body systems from functioning in the ways that they
should!
i was writing because i get your newsletter
and read it thoroughly w/ each issue. however, in all the various
protocols you and your readers discuss, i have never seen any discussion of
ayurveda and others' experiences w/ that. i really want to talk
specifically with other cfs/fibro people who have had experiences,
good or bad w/ ayurveda, as i am considering going back to the
health center to do another panchakarma, which is quite costly, but i am
desperate to get myself back onto a better path!"
13. GULF
WAR ILLNESS IS REAL
From a
reader--
From a Gulf War
vet--
"I can say from my own very personal
experience that I was sick for about 5 years following my tour in the
Gulf. The symptoms I experienced were as follows:
1. Chronic fatigue.
2. Lowered immune system.
3.
Elevated rates of some critter called Epstein-Barr virus.
In
my tour of the Gulf I only touched foot out of my boat in Oman.
I went
to Washington DC to talk with Senator Regal (remember him?) who stated
that
they felt that the advanced
immunizations (for Anthrax and others) by the military were to
blame.
He showed me studies and test results of veterans with
elevated levels of Epstein-Barr. The Senator stated that Epstein-Barr
indicates that some critter was in your blood, when the critter leaves it
creates an oppurtinity for Epstein-Barr. Therefore Epstein-Barr is a
good indicator of damage done to your immune system. Again this was the
Senator talking, I never really looked beyond that.
I tried to get the
exact information on these shots but they are not in my medical record from
the Marine Corps.
Officially the Marine Corps (the Navy actually ) says
they were "lost".
I have often wondered if they were
classified instead - or if my paranoia was getting the best
of me.
I thought it was strange when the directive came out for the
presumption of this illness from the VA. (hush money)
Dr. Cunningham
(allergy, asthma and Immunologist) stated that without these records he could
not help.
After about 10 years my
symptoms completely disappeared. The asthma went into complete
remission, and no - thank God - I no longer am suseptable to every illness
that is going around.
It could
be quite possible that I contracted a form of Chronic Fatigue that I got
immediately when I got out of the military and not related to my
service. I suspect otherwise.
On a different note,
those of you who are friends of Vets coming back - reach out to them
and keep an eye on them. My Friend Tom came back from
Afghanistan and started having a anxiety attacks and paranoia. I was
able to take him to the VA hospital where he was able to get some treatment
and the anxiety and paranoia went away.
These guys are real heroes,
they took care of us - now we should make it a point to take care of
them."
14. DO FLU SHOTS WORK? ASK A VACCINE
MANUFACTURER
Also see Topic 22
below.
15. PIGEON DROPPINGS
From a reader--
"I can’t help wondering why doctors, and
researchers etc., are only looking at the symptoms we CFS, Fibro, Gulf War
Syndrome etc., people suffer from. Why aren’t they looking for a
common factor amongst those of us presenting with these symptoms. All
of us...including GWS veterans. Call me naive but I personally believe that
we’re all suffering from the same disease – that’s been triggered by one
common foe. And it’s like looking for a needle in a haystack. But,
that needle exists. And it's not going to be found by only staring at the
symptoms.
I’m sure that most people with these
diseases (if asked for a response) would have their own idea of what they
think might have caused it. One might say mosquitoes (I met someone once who
was convinced of this) another might mention their cat had feline flu.
Perhaps someone else out there (like me) might think it’s caused by bird
diseases. Rats, mice, and the list goes on. Shouldn’t the researchers be
polling sufferers? I mean you can’t get to the gold without
digging deeper!
16.
MARRIAGE and CHRONIC ILLNESS
From a lady with severe FMS--
"My hubby is in pain 24/7 and we just
help each other out. Some days he does more, some days I do, but we took
our marriage vows seriously. Just wanted others to know if they have a
spouse in pain and have this chronic illness, it can work out."
This is soooo
sweet! Chronic illness can put a strain on the best of
marriages! My husband has had to make many sacrifices to live with me
www.fms-help.com. He picks up the heavy end of
the load at home so I can get the rest I need in order to keep working.
Not every spouse is understanding of an ill mate, unfortunately. See
www.fms-help.com/relationships.htm. If you are a woman, see www.fms-help.com/marriage.htm (my marital harmony site). It takes Godly
grace to live with anyone, because troubles come to all eventually as part of
our maturing process.
17.
FEELING DEAD
A reader has an intriguing
question....respond directly to Patti At710@aol.com--
"I go to sleep and after sleeping for about
an hour - I wake up and I can't feel my arms or my legs at all,
and I'm FREEZING to the point of my teeth chattering.
It feels as if my blood has pooled to my torso, and
as I wake up - my heart begins to race, which then gets the blood
flowing back to my limbs. Its that initial few moments that are
absolutely frightening - because it feels as if I have just almost
died, like had I not woke up, I may have "crossed on over to the
other side". Once I'm awake for just a few moments, I am ok -
perhaps still a little cold, but all other symptoms
subside. I also have some neuropathy when I'm up and awake
during the day, but that is usually either in my arms and hands OR my legs and
feet - and generally not both at the same time. - Patti At710@aol.com"
I know from personal
experience that FMS/CFIDS has something to do with the hypothalamus gland that
regulates the temperature mechanism in our body. I have had the
"teeth-chattering cold" experience under 5 blankets when it was 72 degrees in
the house. FMS/CFIDS also has to do with blood volume and oxygenation of
tissue and brain cells. (See various fascinating articles in the
yellow box on my homepage at www.fms-help.com.) I was intrigued by this reader's question, because I
have at times been so totally "drained" www.fms-help.com/yuppie.htm by CFIDS that I have felt almost dead too -
like a dead battery (my brain being the battery). I couldn't imagine
being a dying cancer patient and feeling much worse. It is a horrible
feeling! We do know that the body is electrical, so perhaps the "dead
battery" analogy is not far from the truth. There's a video about a
young woman with CFIDS whose doctors didn't take her seriously and she
died! Watch "Doctors'
disbelief kills one woman with ME/CFS" at http://www.youtube.com/watch?v=0Y_T5ylWUv4
18. VULVODYNIA and POST POLIO SYNDROME
(PPS)
From a
reader--
"I got sick [many years ago] with a
flu and just went downhill from there......doctors said it was
“all in my head” (and we are finding out that was correct –
except for not mental – but physical in my head) and wound up
with a shrink on medications….I went back to work full time and was always
“hurting” but nothing visible so everyone thought I was just complaining about
all these pains in my body as well as the vulvodynia….which
also did not show any signs to GYN at the early stages….but as it
progressed….I was lasered for this and all vulvar tissues
grew back red and inflamed just like before…. they do not recommend
this anymore – it proved to be no help…I pretty much have stayed
“holistic” and natural and trying to help myself…..do not want to take
drugs….had bad experiences trying them in early stages…..when no one knew what
was happening to us….at least now it is out there and we know we are not
crazy….something did happen to our bodies….whether post-polio
syndrome (I had the summer swine in 1948) and did not get the
paralyzed polio but wonder about the non-paralyzed-polio and
the vaccinations for polio in the 1950’s ….the live vaccine
and the dead vaccine….I got both in grade school…..makes you
wonder."
I too have
wondered about the polio vaccine I took on sugar cubes at my
elementary school in 1960. However, other family members took it
also and did not develop FMS/CFIDS like I eventually did. You can read
more about vulvodynia and post polio syndrome in my newsletter archives at
www.fms-help.com/newsletters.htm. I believe CFIDS is viral. So many of us never
"recovered" from a flu or virus that we had www.fms-help.com/fatigue.htm.
Also see many interesting articles about the viral theory on my homepage at
www.fms-help.com (look in the
yellow box on the left).
19.
DRANK
From Dom's message
board--
20. MEN
WITH FIBRO
From a
reader--
"I have suffered with FMS [for many years]
but my diagnosis was not accepted by disability because I was a man.
That was it. I did not have FMS because I was a
man. It did not change my symptoms or my suffering
though. I had to stop doing physical labor but that was a blessing in
disguise. I just learned to live with the pain and I still have not been
able to sleep more than 3 hours at a time. Recently I had a major
flare-up with my feet and ankles and I could barely walk until
mid-morning. As a result I was rediagnosed with FMS."
21.
VITAMIN D DEFICIENCY
From a
reader--
"Signs of
deficiency
The quick-test,
described below, is one way to self-check for low levels of Vitamin D. It
works because calcium is delivered to an area of the bones that is like a
gelatin matrix. Then, this gelatin matrix hardens into sturdy bone. But
calcium can only be absorbed into this matrix when it is joined by enough
Vitamin D. If you have a Vitamin D deficiency, this matrix will revert back to
gelatin near the surface of the bone. This causes tenderness and bone
pain.
Are You “D”
Deficient? Take the Quick test: Find out in 10 seconds
With your thumb, press on your sternum (breastbone). Is it tender or
painful? Now, press on the tibia (shin bone) of both your legs. Are they sore
or tender? If you answer “yes” to both of these tests then there’s a 93
percent chance you’re Vitamin D deficient.
Signs of
deficiency
The quick-test provides
an easy way of checking for low levels of Vitamin D.
This kind of
bone pain can not only be seen in cases of osteomalacia (softening of the
bones), but also in fibromyalgia, chronic fatigue
syndrome
I got this from this
page...........http://lpvitamins.com/articles/?page_id=19"
22.
VACCINE COMPONENT LINKED TO CFS
From a
reader--
|
Vaccine Adjuvant Linked to
Chronic Fatigue Syndrome |
|
A team of scientists has investigated
a case of vaccine-associated chronic fatigue syndrome in an individual
demonstrating aluminum overload. This is the first report linking
aluminum overload with either of the two conditions.
The team found a possible mechanism
whereby vaccination involving aluminum-containing adjuvants could
trigger the cascade of immunological events that are associated with
autoimmune conditions, including chronic fatigue syndrome and
macrophagic
myofasciitis.
The CFS occurred in a 43-year-old man
with no history of previous illness. It followed a course of five
vaccinations, each of which included an aluminum-based adjuvant. It is
also possible that for a significant number of individuals,
aluminum-based adjuvants may represent a significant health risk --
including the aluminum based adjuvants currently being used in
the mass vaccination of young women
against the human
papillomavirus (HPV).
|
23.
OSHU
From a reader--
"I like the idea of a survey of causes of
FMS. I spoke with the fibro experts researchers at OSHU... and they were so
interested in what I had to say. They said.. 'Wow! We should talk
to people with fibro more often.' Good idea Doc!"
24. FLU
SHOTS and IMMUNE SYSTEM
From a reader--
"Came across your website this a.m. and was
surprised to finally see some info from a male reader regarding chronic fatigue
syndrome as it relates to a flu and pneumonia shot he received at the same
time. Two years ago, I had the flu and pneumonia shot at the same
time in the same arm. It totally wacked out my immune system and I ended
up with cfs; was bed ridden for two months, no appetite; had to learn to walk
all over again. It was the worst time in my life. Did some
reading on the National Institute of Health website and found that they had done
a study and acupuncture helped some individuals 45% of the time, so I tried it
and it got my back on my feet. I still go once a month to keep my immune
system boosted. Thank you for the information on your site, I always felt
that the combination of those two shots affected my immune system but I was not
able to find anyone else who had experienced this until I saw your
website."
25. DOM'S
UPDATE
I've been feeling
well these days and soooo busy,
busy!!!! I got a slight sinus infection/bronchitis
this week from overdoing it with Thanksgiving preparations, Christmas music
preparations, big weather changes here in Florida (20's and 30's at
night). Hope everyone has a
great Thanksgiving! Our
holidays have not been the same since my dad passed away in 2005 www.fms-help.com/eulogy.htm, but
we as a family continue to serve Christ and help those around us until we meet
again in God's wonderful heaven. I miss my dad greatly! His
gentle, joyful, loving, Christ-like presence graced our family gatherings until
the Lord called him home at age 91. I just got a picture today from
our family in China who live in Szechuan province, where the earthquakes
were. My dad's brother just turned 93! My uncle and his wife look
very well for their age! People often remark that I look young for
57! I attribute that solely to genetics. However, since I am also
half Ukrainian, I don't know how much longer I can maintain my youthful "Asian
advantage"- ha!!
I continue to
rely on many things to help me have a functional life despite FMS/CFIDS - I use
meds, supplements, and lifestyle helps. A current list
of things that help me is at www.fms-help.com/what.htm. I
also have 100 Tips for Coping at www.fms-help.com/tips.htm. There
are lots of intriguing research articles about FMS/CFIDS at www.fms-help.com and ways to explain this illness to family and friends - look
in the yellow box on the left. And I have a page about "Christmas Blues" at www.fms-help.com/Christmas.htm,
for anyone dealing with holiday depression.
Well, let's all
try to take it easy heading into the Christmas season. The real "Reason for the Season" is that Jesus, God's Son, loved us
and came to earth to be the atonement for our sins so we could be reconciled to
a holy God. My story of being "born again" is at www.fms-help.com/salvation.htm. This was the most eternally significant event of my life - at
age 36!
Your fibro
friend,
Dominie