January 12,
2008
A compassionate,
informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue &
Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis
(ME)
Don't
miss--
#3 "BEYOND THE DARK CLOUD" - road to recovery from CFIDS after 25
years
#12 PREGNANCY, FIBROMYALGIA & INTERSTITIAL
CYSTITIS - can you help
Sandi?
#15 IS CFS CAUSED BY THE AMYGDALA? - Ashok Gupta's theory
#18 DOM'S UPDATE - MY RESCUE REMEDIES - these help pull me out of "crash"
mode
1. READERS
WRITE
"I found www.fms-help.com about a year ago and I just
wanted to shout 'Eureka!'"
"Great website. Very
helpful."
"Reading up on the internet is
helpful but scary 'cause you do not know what to believe. I find
your site honest and true…thanks for taking the
time."
"I
love your website, it's great."
"What you
have provided for myself and countless other readers, those who either
suffer with CFIDS/Fibro or, like myself, care for someone whose immune
system no longer functions like that of a healthy
individual, cannot be measured in anything
tangible."
"Thank goodness for your site."
"Great info and positive,
clear, and hopeful
style."
"I was
reading your website for information on fibromyalgia. It was great
support."
"I really
appreciate your website."
"I am
very ill with fibromyalgia. We don't have support groups and not a
single doctor that helps with this illness from hell.
Your website is very informative."
"Thank
you so much for putting this web page together."
2.
ANTIBIOTICS & SINUS INFECTIONS
Are they helpful or
not?
3. "BEYOND
THE DARK CLOUD"
Author and newsletter reader, Thea Schlosser, sent me a copy
of her excellent book, "Beyond the Dark Cloud" about her journey to
recovery from CFIDS. Like me, Thea has left no stone unturned
in her long search for a "cure" for CFIDS! Her story is
traumatic!! Thea even endured numerous electric shock treatments to
her brain, since doctors thought she was suffering from "depression!" This
book discusses many avenues of dealing with CFIDS, most of which I also
researched in the past 25 years, so I felt like Thea and I have walked down the
same path. She was told that her illness was "all in her
head." (Sound familiar?) Thea was born in Austria and emigrated to
the U.S. She tells her unique CFIDS story very personally and from her heart and
also gives excellent medical info about CFIDS from many
angles. I think Thea has a beautiful and positive soul despite the
many hardships life has sent her! The book is available at Amazon.com -
see http://www.amazon.com/Beyond-Dark-Cloud-Recovery-Dysfunction/dp/0965321509/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1200068267&sr=8-1 (Price $14, ISBN # 965321509.)
4. PAIN
RELIEF
A lot of readers mention suffering
with fibro pain. I did too for the first 14 years of my illness.
Around 1996, I started to find some things that helped me. I have a few
suggestions at www.fms-help.com/what.htm - scroll about 2/3 down on that page - look for the red
writing. I have been curious if Lyrica was helpful, but it's turning out
to be about 50/50 for newsletter readers who are trying this new drug
specifically for fibro pain. More specifically, I made a list of pain
suggestions at www.fms-help.com/painrelief.htm.
5. DR.
TEITELBAUM
From a
reader--
"Dr. Tietelbaum treated me when I was first
diagnosed. Doesn't take insurance anymore, Sure wish he did.
He is the greatest."
I understand that Dr. T. is now
the head of the Fibromyalgia & Fatigue Centers.
6. EMOTIONAL FREEDOM
TECHNIQUE
From a
reader--
"
I feel that the persons
who wrote #2 and # 8 in your newsletter at www.fms-help.com/122807.htm can
benefit very much from EFT, also called TFT. EFT by
Gary Craig has done amazing things for
people. They should look up EFT (Emotional Freedom Technique)
trained people in their area www.emofree.com."
7. PATIENTS RATE DRUGS
From a reader--
This is a GREAT SITE!!! You can look up your meds and see
how other patients are doing with them. So far I looked up Lyrica, Ambien
and Lunesta. As usual, people report widely varying results from these
drugs - everything from it was the greatest thing and solved my problem to I
felt possessed and needed an exorcism! We are all so
different!
8. FMS/CFIDS & SOCIAL
MISUNDERSTANDINGS
From a
reader--
"I cannot make them seem to
understand if they see me shopping on a Friday or Saturday, that I will be
well enough to go to church on a Sunday."
Oh,
wow, can I ever relate to this kind of situation! So often our family and
friends see us functioning very well on a certain day, but we can't keep it
up. Of course they wonder! I had to stop playing the piano for
weddings, because I can no longer commit in advance, because I never know if I
will be able to fulfill my commitment. I hate this! The only
people who understand what it's like to have fibro are those of us who have
it. I hope everyone is enjoying the new message board at http://health.groups.yahoo.com/group/dominie.
We already have over 200 readers sharing information and encouragement.
9. EIGHT CAUSES OF NIGHT SWEATS
From the message board--
This is a VERY INTERESTING article!! The sweating we
experience could be from meds like anti-depressants, autonomic nervous system
disorder, hormones, hypoglycemia, etc. Personally, I have a big
problem with sweating a LOT! I used to think it was hot flashes, but it's
been going on so many years and was not relieved by hormones, which makes me
think something else is going on. Of course, living in humid Florida
doesn't help - the weather here is miserable at least 6 months out of the
year. I wonder too if it is viral? Every time I exert myself
physically in any way, I sweat a LOT! Also, after a shower. Any
comments? Write dombush@bellsouth.net. I run
around the house with a chill pack on my neck a lot, but when I'm teaching at
the music school, I just have to suffer. I am accused of running the A/C
so cold in my classroom that it feels like a meat locker! I also have to
have a fan on me most of the time. I'm 56. Had a total
hysterectomy and went through surgical menopause 20 years ago, so I don't think
it's hormones. BTW, my mother had hot flashes into her 70's! Maybe
it's just our genetics.
10. SENSITIVITY & FIBRO
I
just ordered these books (they have been mentioned by readers in previous
newsletters and I was very curious to read them)--
Too
Loud, Too Bright, Too Fast, Too Tight - by Sharon
Heller
The
Highly Sensitive Person - by Elaine Aron
11. FIBROMYALGIA DIET
From the message board--
This list may be helpful for some (and many of these suggestion
are in my 100 Tips for Coping with Fibromyalgia at www.fms-help.com/tips.htm, but I
have mixed feelings about a dietary list, mainly because I have heard from
fibromites for years now who have been very strict with their diets - even
vegetarians - and they still have fibro. Frustrating, isn't it!
I am not sure that fibro is a diet-related illness, although some fibromites
have food allergies, but then so does the general population. My feeling
after 25 years of having FMS/CFIDS/ME is that it is something viral
attacking areas of the brain, but sufferers also have a genetic
predisposition. Usually people report heavy stress before the onset of
their fibro (like me - www.fms-help.com/fibro.htm).
However, fibro is not just caused by stress, because that would mean that
everyone under exteme stress (military, living in war zones, etc.) would have or
develop fibro. Have you noticed that "healthy" people can eat anything
they like?.....usually. They also withstand the onslaughts of the same
"bugs" that go through our communities, and remain unscathed. My husband
and I were even talking yesterday about people like George Burns who can smoke
cigars and live to be 100. (Some people just have the genes for long
life.) Then there are people who develop lung cancer who never smoked,
such as Christopher Reeves' wife, Dana. Life just isn't fair
sometimes. It seems that once our immune system starts malfunctioning (due
to stress, mono, EBV or whatever cause), the body can't seem to find
homeostasis again. I have had to take an immune balancing powder since
2001. It is not the complete answer, but has helped me for things like
sleep, which - even though I take a sleep med - becomes more erratic without the
immune powder. This whole illness is such a mystery! I keep this
newsletter going (12 years now) so we can share info. Hopefully one day
researchers will find a cure for this that helps EVERYONE! Seems we all
have found small things that help alleviate certain aspects of our symptoms, but
there is no ONE CURE that helps all fibromites, despite what the drug companies
may claim.
12. PREGNANCY, FIBROMYALGIA, CFS & INTERSTITIAL
CYSTITIS
"I am a 23 year veteran of
ME/CFIDS. I also have Interstitial Cystitis and Fibromyalgia.
On New Year's Day I had my second
miscarriage. My goal is to write a book for pregnant
women who have these painful and long term diseases. During my
pregnancies, I could get no real health information, and felt like I was flying
blind when it came to what to expect during pregnancy. For right
now I would like to have an article published, but I could use the help of some
of the well known researchers and supporters. Please feel free to forward
this email to women with experience with pregnancy and ME/CFS, Fibro, and
Interstitial Cystitis. If you have a warm relationship with any of the doctors
treating these illnesses, please forward this email. The concrete
information out there is basically nonexistant, and I would like to
fill in that gap with solid medical information. I am most interested in
interviewing Dr. Elaine Defreitas, Dr. Paul Cheney, Dr. Leonard Jason, Dr. Dan
Peterson. I also plan to interview women regarding their childbearing
choices and any tips they may have, with a goal of introducing a statistical
sample that may someday be used for healthcare professionals when it comes time
to working with pregnant women with these conditions. Any help would be so
very welcome. Thank you so much. - Sandra A. Taylor sagefox@aol.com"
I really admire people who turn
their pain into something positive for other people, like Sandi is trying to
do here. Pregnancy as it affects women with fibromyalgia,
chronic fatigue syndrome, and/or interstitial cystitis is such an
important subject! From the email I have received from readers in the past
12 years, it seems that most (not all) fibromites feel better when
pregnant, but worse after delivery. I think this has to do
both with the hormone changes (such as Relaxin - see my 100 Tips for
Coping at www.fms-help.com/tips.htm) and also
the physical stresses of having a baby. I suggested that Sandi
also interview Dr. Jacob Teitelbaum, if possible.
13. MINERAL THAT
HANDLES DISEASE & INFECTION
From a
reader--
"There is a new
amazing book that I think you should know about. The answer to most diseases has
been found and proven out in Africa. It's not a drug, but rather a mineral
supplement and in handles most diseases caused by bacteria or
viruses, including even AIDS. You download it free of charge. Anyone
can test this supplement for themselves to see if it works. Anyone can make the
supplement themselves. Just visit http://miraclemineral.org to download the free book called, The Miracle Mineral
Supplement of the 21st Century."
Only Part I of this book is
free.
14. COMMENT ABOUT
HUSBAND
From a
reader--
"Thank you so much for all your hard work and I would also
like to tell your husband thank you for being so very
understanding."
Yes, without Don's understanding
(most of the time), I wouldn't be able to do my FMS/CFIDS/ME work. My
husband is in good health, but for some (wonderful.....) reason he can
understand my limitations. Does he get discouraged with me at times?
YES!!!! Particularly that we can't travel or go places together, but he's
a very independent guy, so this isn't as much of a burden for him as it would be
for another type of person. Fortunately, we are through raising children,
so that stress is gone in our home and we are peaceful empty-nesters
now. We enjoy the antics of our two little dogs (a rat terrier and a
chihuahua), and we work together at church - fortunately just 1 mile from
where we live. I play the piano and Don operates the sound booth. We
both like music so we sometimes sing together at home or at church. These
provide happy times for us. My husband is handy and helpful around
the house, which I sure do appreciate!!!!! Does he have a down
side......oh yes.....but then so do I.......but we won't talk about
that.....haha. I just appreciate that Don is understanding of my
illness. I am soooo blessed that way, as I have not always had this
luxury. Check out the letter from a man whose wife has fibro at http://www.fms-help.com/072006.htm and
the response from a reader at http://www.fms-help.com/relationships.htm -
you can see all the problems that fibro can cause in
relationships!
15. IS CFS CAUSED BY
THE AMYGDALA?
Ashok Gupta says he has found the
cure for CFIDS for 80% of patients. See www.guptaprogramme.com. I am very intrigued by his theory of what causes CFS, which
is he says is caused by trauma in the amygdala (area of
the "primitive" brain). In recent years, I have come to believe that our
problems are caused by a brain malfunction (see the article
from Australia on my site called "Drained by the Brain" at
www.fms-help.com/yuppie.htm).
I read Ashok's research paper last
night at www.guptaprogramme.com/html/explainCFS.asp explaining his CFS theory. Basically he says that sometime in our life the
amygdala perceived a fearful or stressful situation while we were sick with a
virus. From then on, our cells associate stress with a virus and it's a
downward spiral or vicious circle. Hmmm. I wonder about that.
If this theory is correct, then the whole world would have CFS!
But I know he is right that the
amygdala, hypothalamus and limbic portion of the brain control hormones,
emotions, temperature regulation, immune system,
etc. There are a lot of "may" and
"might's" in his research paper. He also said that people with this
amygdala problem focus on their symptoms and that creates fear which triggers
the virus, and it becomes a vicious circle. Hmmmm again...
My childhood was stressful in many
ways and I was also frequently sick with viral illnesses, but that also
describes a lot of other people's childhoods who do not have CFIDS.
He also mentions a genetic
predisposition for CFIDS/ME. I think that is the answer right there!
One day researchers may find the genetic marker for this illness like they have
for so many other maladies of mankind.
Ashok has had a lot of
successes with CFIDS patients using his method of resetting the amygdala, so I
am all for whatever works! His theory is very intriguing and I do know that fear,
panic, anxiety and stress have been too much a part of my life for the
past 56 years. I will be looking into his program more as soon as I
have time. I encourage everyone to check out Ashok's site for themselves, because I have not done a very good job of explaining his most interesting concept. Oh, and I might add the Ashok says he had CFIDS/ME also and has been 100% recovered for the past 10 years. If any readers have ordered his program and would like to comment, please write dombush@bellsouth.net .
16.
VULVODYNIA
Just got this question from a
newsletter reader (she is not the first one to ask me about
vulvodynia!)--
"I just read your article on Vulvodynia http://www.fms-help.com/June2005.htm
(topic 11) and went to the Vulvar Foundation website. I have done much
research on Vulvodynia, I have just recently been diagnosed with it. I haven't
gotten the Calcium Citrate yet but am using Estrace cream along with Calendula
cream, can't tell a difference yet. What are some of the things you do for it
and does it help, everywhere I turn it seems as thought someone else has it, I
have been dealing with it about five months now and been to doctor after doctor
but have finally settled with this wonderful lady gynecologist, I take my
research to her and then she is helpful to me. I guess at this point we are just
trying things and both learning. I have learned that IBS is also tied in with
it, I had a feeling that it was. I have learned so much from surfing the web for
vulvodynia, what would we do without it?"
17. SUPPORT GROUP GOING
WELL
My newsletter readers' support group
at http://health.groups.yahoo.com/group/dominie is
going well. 220 readers have joined so far and are participating in
discussion, support and information sharing about FMS/CFIDS/ME. (You
can sign up for the DAILY DIGEST option to avoid a lot of
emails arriving in your inbox! ) Christina, a caring newsletter
reader, is doing a great job as our moderator!
18. DOM'S UPDATE - my
rescue remedies
I'm doing well - just gotta
keep taking my meds and supplements or I wilt like a dandelion! A list of
things I have to take is at www.fms-help.com/what.htm. Fortunately, I am pain free
now www.fms-help.com/painrelief.htm -
"only" had pain during the first 14 years of my fibro www.fms-help.com/fibro.htm.
However, I still have to monitor
stress levels carefully to avoid bouts of debilitating fatigue. The good
news is that I have found several things that perk me up almost
instantly!
For instance,
last night, I was spiraling downward
again - got home from teaching and felt like "poop!" (You know what I
mean!!) I reached for my "rescue remedies" and
within minutes felt normal again. What a
puzzling illness! My theory is that these things send oxygen to
my brain, or maybe correct some kind of deficiency I have in my system....who
knows!? Anyway, I'm glad to have things that revive me when I've
"crashed!" (Everyone is different, but if you want info, write me at dombush@bellsouth.net.)
My other rescue item is an essential oil blend
that I found about 8 years ago. Interestingly, the olfactory system (our sense of
smell) is tied to the limbic portion of the brain, where it appears our
FMS/CFIDS/ME troubles originate. Different essential oils have
different electrical frequencies. Each of us is unique, but I have
found my "rescue remedy" as far as the oils go. It has repeatedly
brought me back to life when I felt like my brain has "died" and I've
"flat-lined." (Only CFS/ME sufferers know this dreadful
feeling that can go on for days, weeks, months or even years!)
Without these things that I discovered through
trial and error, I would have no option but to suffer! At least
now I have a way to rescue myself from those awful energy
and brain crashes. Everyone is different, so a lot of experimentation is needed to
find what works for us......too bad we can't find that magic item on the first
try and save money! (They don't call this "Millionaire's Disease" for
nothing!)
I also want to mention that if I had not been
exposed to toxic mold in 2005 at my former workplace www.fms-help.com/mold.htm, I
would be doing much better today. That exposure really set me
back! I still have chest tightness and cough, especially when
fatigued. 25% of the population is negatively affected by mold. I
must be in that select group of people...
I am trying to follow my mother's and
husband's advice about getting to bed earlier. The only trouble is
that I work afternoons and evenings, getting home anywhere between 7 and 9:30
p.m. It is hard to calm my mind down and go to bed early. Also, if I
get up in the morning too early, by the time I have to leave for work later in
the day (I teach piano at a school of music www.fms-help.com/students.htm) I am already starting to feel fatigued. I find it's better
for me to go to bed later and get up later because of this. I also don't
fall asleep quickly - it takes 1-2 hours after taking my sleep med (ambien) so I
hate to just lie there "wasting time." But last night I did that (decided
to rest, meditate and read) and it did calm my nervous system down.
My mother often asked me when I was growing up:
"What have you accomplished today?" (Good question....particularly for
"lazy" teenagers.....ha!) My parents were both very hard-working (had to
be!) and I am the same way. This is a good motto if only I
were a healthy, normal person, but with the limitations of my health, it
sometimes makes me feel like a failure (which my husband reassures me that I am
not....bless him for understanding how this illness often affects
me!!!)
Emotionally and mentally, I have been trying
lately to ACCEPT my limitations rather than fight
them. (See www.fms-help.com/trying.htm for
why "trying harder" doesn't work with this illness!) It's humbling to realize that I can't keep up with the
pack. The misunderstanding this illness causes is just something we
have to deal with. Be strong and calm! Your experience is valid!
Don't let others push you into their mold of what they think you should be able
to do. As my mother says, "You know your body better than anyone else
does."
'Til next time,
Dominie
Return
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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.
