Dominie's FMS/CFIDS Newsletter
October 24, 2006
Below are 10 topics of
interest to people with Fibromyalgia (FMS), Chronic Fatigue Immune Dysfunction
Syndrome (CFIDS) or Myalgic Encephalomyelitis (M.E.) --
1. FIBRO &
FATIGUE CENTERS
From a reader--
"I went to the open house for the Fibro &
Fatigue Center in Connecticut last night. Their presentation was quite good.
They seem to have an individualized approach & use scientifically proven
drugs & supplements to help people. It is pretty expensive, though. They
estimate that the tests can run in the $1000s. You do get a bit of a break if
you don't have insurance (go figure...). It may be worth it for me. I've been
fighting this for a while & I feel like it's been getting worse. I'm still
fairly young - I'm hoping I'll be able to, at least, prevent it from getting
worse as the years go by. At least, they have a focus on products that are
really tested & proven to help. There are so many products out there. It's
hard to do all the research to find the ones that actually are proven to reverse
the symptoms. They actually answered all of my most "difficult" questions &
seemed to really understand the illness (unlike most doctors). My mother had
cancer when I was a kid & she went to Sloane-Kettering hospital in NYC. The
attitude of the Fibro & Fatigue Center was much like that of
Sloane-Kettering towards treating cancer only on a smaller scale. I haven't
heard much about their long term success from their protocol, though. I'm
looking in the various chat rooms for info. Short term they seem to have a
pretty favorable response."
2.
FMS/CFIDS VIDEO CONTEST
From Marly Silverman of
P.A.N.D.O.R.A.--
The Advocacy Video Contest is drawing good response and I hope it
will inspire individuals with neuroendocrineimmune disorders to send in creative
videos. We already have a few responses from England and California and some have already joined the
P.A.N.D.O.R.A. “group” on YouTube.Com. The main purpose is to create awareness
of the plight of individuals who have CFS, FM, GWS, MCS and other related
illnesses. We will be sending the contest details to film schools
throughout the country. If all possible, I ask your readers to forward the
details of the video contest to their friends, family, post on their blogs, web
sites and share it with their local CFS/FM, GWS, MCS advocacy groups and or
organizations. The individuals and organizations below are already helping
us to spread the word. Support the video contest has been amazing! We are grateful to Dr. Kenneth Friedman, current CFS
Advisory Committee Member and a distinguished professor at the University of Medicine and Dentistry of New Jersey for disseminating our video contest to the medical students
at the University. Dr. Friedman also contacted the New
Jersey CFS Association and they have
posted our announcement on their web site too. OFFER, a non-profit organization
founded by Dr. Lucinda Bateman, will also disseminate the contest on their web
site and on their next newsletter. The more we disseminate about this
great outreach advocacy event, the more interest will generate. We appreciate
the support of such amazing individuals and organizations!
[FROM
DOMINIE: Interestingly, a reader just sent me this link to a video about a
CFS /M.E. patient http://www.youtube.com/watch?v=LGsHr3x9pVE
as I was preparing this newsletter. WARNING!!
It is extreme and depressing, but documents the
suffering some people experience with this illness. There are links
to other videos about CFS / M.E. patients from this site. I wrote
Marly back to tell her about this video and this is her
reply...]
From Marly: The video link you sent me is
from Greg Cowhurst – He sent me an e-mail telling that our
contest inspired him to do the video diary. It was a good feeling to hear
that from him! And the videos to me are bittersweet, partially because we
inspired them which is good, an partially it is so sad to see Linda’s and Greg’s
plight. It hits home doesn’t? And yet I am so pleased that we were able to
create such awareness. A picture is worth a thousand words! I have one of his
videos already uploaded to P.A.N.D.O.R.A.’s group link on Youtube.com so more
folks can see the videos and inspire him (and Linda) to do more. I think
everyone who has seen the videos have responded kindly to their plight.
Please submit your videos to http://www.youtube.com/group/pandoravideocontest where they can be uploaded for viewing. Contest will run from Oct
11, 2006 to November 30, 2006, 9:00 pm Eastern Time.
3.
MIRAPEX
From a reader--
I recently went on Mirapex
to increase the dopamine levels and it has definitely helped my
anxiety and some of my pain. I had found
several articles on Mirapex which is traditionally used for Parkinson's. I
showed the articles to my pain neurologist and he thought it was good for me to
try. l take Cymbalta for seratonin and noripenepherine. I also have
been on Zanaflex for a few months to reduce the substance P level in the
brain. I take most of it at night and little bits during the day so I
don't get too tired.
4. ULTRAM (revisited)
From a
reader--
I read
with interest in your past newsletters about ultram and I feel that I have to
put in my two cents worth. I have been taking ultram off and on for over 6
years. I have taken it for weeks at a time, stopped and taken something else
with no bad effects at all. Some times it has been the only medication that has
helped me-even more than narcotics. With fibromyalgia it seems that I have to
switch up my meds but I must say that ultram has done the most good for me over
the longest period without any side effects. I have talked with many people who
did not get benefit from ultram but it worked wonders for me. I also never had
any trouble when I stopped taking it.
5. ONLINE
FIBRO SUPPORT GROUPS
Need to talk about your life and problems
with fibro? Need feedback from others? Online fibro forums are
available 24/7 - even when you can't sleep!
If you know of other online fibro message
boards, write me at dombush@bellsouth.net. We are blessed to
live in the era of the internet - how awesome this is for the homebound or
chronically ill - to be able to communicate with others who understand their
situation because they live it every day.
6.
ANXIETY, PANIC ATTACKS & CELEXA
From a reader--
"I have been getting panic attacks and am on
medication. It is the most terrifying experience of my life and it is worse than
depression. The medication CELEXA helps greatly reduce both panic attacks and
depression."
7.
NETHRONE?
Now I've seen everything! Got this
from a reader....at first I couldn't figure out what it was--exercise equipment,
dental chair? Interesting concept...
"Here's something interesting for fibromites
who spend time working on the net: http://nethrone.com."
8. CHRONIC
MYOFASCIAL PAIN
From a reader--
"Chronic myofascial pain (CMP) is a
musculoskeletal chronic pain syndrome that is nonprogressive, nondegenerative,
and noninflammatory. It is characterized by pain and stiffness that is
restricted to certain locations on the body. Like fibromyalgia, chronic
myofascial pain is not a psychological disturbance, and neither condition is a
mental illness, although chronic pain can cause anxiety and lead to
depression. The American Medical Association, the World Health
Organization, and the National Institutes of Health are among those who have
accepted these as legitimate physical illnesses and major causes of
disability"
9. OXYCONTIN
WITHDRAWAL
From a reader--
"Concerning Oxycontin… I went on it after a hysterectomy a
month ago. I found it wonderful for controlling not only my post-surgical pain,
but FMS as well. Unfortunately I was addicted in three days, and two weeks later
when the prescription ran out, I went through a full physical withdrawal
including DT and panic attacks, and a migraine. My doctor found that
amusing, I did not. Oxycontin is an opiate, a narcotic, and is very highly
addictive and kills a lot of people since it is a commonly abused street
drug. Please advise your readers to be very careful when recommending such
stuff for FMS. It interferes with living and can kill."
10. PERSONAL FROM
DOMINIE
Need info on
essential oils? They
enable me to function every day. Order a
free report at
my site
http://dom.younglivingworld.com - it will be sent to
you automatically. You will be
fascinated by this info.
(Also, if you want to be on my new
oils newsletter list,
email me at
dombush@bellsouth.net.)
My husband is reading an incredible book to me this past
week. It's called "90 Minutes in Heaven" by Don Piper, a
pastor who was killed in a car accident 15 years ago and went to heaven, only to
come back to earth 90 minutes later. He then suffered horribly for
years while recovering from immense injuries and begged God to take him back to
heaven. Despite the incredible suffering this man went through, it is
comforting to me to learn of his experience, because I can
picture my dad in heaven now www.fms-help.com.eulogy.htm. My father believed
John 14:1-6, and even quoted it to us at the hospital before his heart
surgery 10 years ago. (BTW, I use an online Bible
at http://www.biblegateway.com/keyword, when trying
to find something specific....one of the blessings of today's
technology!)
The recital for our new School of Music last
Saturday was awesome!!! I was soooo proud of my students! We
had 30 in the recital (piano, voice and guitar). It went great, but
I'm sure glad it's over so my stress levels can go down again....at least
until our next recital in the spring. I become a Type A maniac
before recitals, trying to take care of everything that has to be
done. My music students range in age from 6 to their 60's. Most
are beginners, and it is a joy to work with them!
Well, for someone who didn't want to write an FMS/CFIDS newsletter anymore
(yep, that was me about a year ago), I sure am sending you a lot of newsletters
lately--but new and intriguing info keeps coming my way, and I just
have to share it with you!!!!!! My motto: "No fibromite
left behind!"
Til next time,
Dominie Soo
Bush
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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.