DOMS' NEWSLETTER
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. Teielbaum 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 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.