DOM'S
NEWSLETTER
March 20,
2007
A compassionate
newsletter for people with fibromyalgia and chronic fatigue
syndrome.
In this issue: 14
topics in PURPLE. My comments
in TEAL.
(See #14 for Dom's personal update and some exciting
news!)
1. READERS
WRITE
"I came across your website
www.fms-help.com while I was checking out
ways to cope with Fibromyalgia. I can't tell you how happy I am
that I found your site. I've printed up materials from your website to
place in my Fibromyalgia Notebook. (This way whenever I get a spare minute, I
can read up on your fantastic suggestions.) I'm sure that I'll be able to
use much of your informative material.....Thank You, Thank You, Thank
You!!!!!"
"I think your site is just
GREAT. I just now discovered it whilst web-walking."
"I'm still really new to this, but you have
been so helpful. I really thought I was losing my
mind. I've never been so sick in all my life and none of
my doctors were believing my story. The information you provided
explains everything. I'm so glad I found you."
"You have a wonderful site--the
best of the best."
"Thanks again for all your work....we
are all indebted to you for your unceasing passion to
rid people of their pain and suffering."
2. FIBROMYALGIA
TISSUE BANK
From a reader--
http://www.azcentral.com/arizonarepublic/local/articles/0228wvfibro0228.html
- "A new tissue bank and new research at the Sun Health Research Institute could
offer hope to millions of people in this country suffering from fibromyalgia, a
chronic syndrome whose many symptoms include fatigue and muscle, joint and bone
pain. The National Institutes of Health has awarded a $1.4 million grant
to Dr. Dianne Lorton, head of the institute's Robert J. Hoover Center for
Arthritis Research, to set up the world's first fibromyalgia tissue
bank."
3. TRIGGER POINT
BOOK
From a reader--
"I am absorbing the information [from this
book] and it is really DENSE but USEFUL. I am sending the information I
found on the web when I ordered it. It is worth the price too!!!
http://www.triggerpointbook.com
4. PAIN &
SLEEP
From a
reader--
"Dr. Forest
Tennant MD, Dr. PH writes this: 'When one has severe, constant pain, the
pain is a severe biologic stress that stimulates the
hypothalamus-pituitary-adrenal system to put extra hormones including adrenalin,
cortisol, and pregnenolone into the blood, since the body naturally wants to
protect itself from the stress...and causes the pulse rate to elevate above the
normal level of about 84 per minute.' He goes on to refer that for some
reason, the action of laying down does not trigger the body to begin
resting so it continues the output of adrenalin which prevents
sleep. For me, I can't lay prone as it applies pressure to my
joints = pain. I sleep in a recliner NOT totally reclined. Often I
can "fake" myself out mentally that I am "laying down" by sitting sideways and
leaning somewhat into one of those body pillows. A useful herb is
VALERIAN, but, it is still a medicine...Valium is made from it (very
concentrated), so, please go cautiously and minimally at the
beginning."
5. GLUTEN INTOLERANCE (CELIAC
DISEASE)
From a
reader--
"If any of your readers
have gluten intolerance, tell them to get a note from their doctor saying they
do. Then anything they have to purchase (for example, Ezekiel Bread) to
avoid the wheat, they can save their receipts and write it off their taxes. They
need to ask their Dr. and their accountant. I do not know the forms they
need but my health food store lady told me this."
6.
FIBROMYALGIA CHAT GROUP
From a reader--
"I love your newsletter and comments some have
about our FMS and all that goes with it. But, I wish we could have
a posting board like Rhuematic.org or Roadback.org. does for the
AP treatment for RA and other associated diseases. I have been through the
AP for RA but still have issues with FMS, but through some of my own "trial and
error" and reading what others have done (education is the best solution!), I am
doing VERY well. One of my biggest issues is immune system--I catch
every cold germ there is. It has been a rough winter for me here in
MI. I think if some of us could chat back and forth we could help each
other so much. I think that most of your readers have the same mind
set--are searching, few drugs and would prefer the homeopathic/supplement
way."
[I have been asked
by several readers about starting a posting board for www.fms-help.com, but I don't have time to monitor it. If you are in a
fibromyalgia chat group online, could you send me the web address? I'm
trying to compile a list of groups for an upcoming
newsletter.]
7. KARL'S
FORMULA
Got this link from
a reader--this product is supposed to keep you from getting colds - apply drops
in ears - has anyone tried it? Kind of weird story behind it too.
www.karlsformula.com
8. DID FLORENCE
NIGHTINGALE HAVE FMS/CFIDS?
From Rich Carlson--
"Have you noticed that May 12 is International
Awareness Day for both ME/CFS and FMS? The reason for the shared date
lies in a bit of history. In 1992 ME/CFS patient and advocate Tom Hennessy
proposed that May 12 be designated as "International Awareness Day for
Chronic Immunological and Neurological Diseases (CIND)" - a day to
speak out and demand that governments respond to these devastating illnesses. It
was an idea that galvanized the patient and advocate communities and has gained
momentum ever since.
CIND is an umbrella term that includes Gulf War Syndrome and
Multiple Chemical Sensitivity Syndrome as well as ME/CFS and FMS. These,
Hennessy reasoned, are all "characterized by cognitive problems, chronic muscle
and joint pain, extremely poor stamina," and more; are potentially very
debilitating; "afflict people around the world in alarming numbers"; and above
all are often "dismissed by the medical profession as...psychosomatic
illness."
And why this date - May 12? It marks the birthday of
Florence Nightingale - a British healthcare reformer (1820-1910) who
broke the trail for modern hygienic, compassionate medical care and public
health, served the wounded gallantly during the Crimean war, and became known as
the founder of modern nursing. But in addition to being one of the greatest
change-makers in all of medical history, Florence Nightingale suffered
the latter half of her life often bedridden with an unidentified CINDs-like
syndrome. Various groups diagnose her illness in hindsight as either
FMS or ME/CFS. But for all, she is a worthy hero.
Hoping you'll find a way to lend your voice to this
Awareness Day,
Rich Carson,
CFS Patient and ProHealth
Founder"
[In 2005, Pattie Caprio founded
the Million Letter Campaign for FMS/CFIDS/M.E. awareness
www.fms-help.com/letter.htm. Also, I wrote a letter to Congress in 2006 www.fms-help.com/congress.htm.
Even though May 12 is considered "Fibromyalgia Awareness Day," for those of us
with FMS/CFIDS, it seems like EVERY day is a day we are explaining ourselves and
trying to increase awareness. Just a few days ago, I had to write a
detailed email to someone who is very important in my life, explaining my
health situation. I may look fine on the outside, but I
actually have many health limitations. It was my desire to stop any
misunderstandings before they got started--and we've all been there
before! The social ramifications alone from this illness can be
devastating. Seems one day we can function, but the next day we
can't. We are unpredictable - even to ourselves! If you need a quick
explanation of fibro for a friend or family member, see Terri Been's classic
article on my site--"My Name is Fibromyalgia" www.fms-help.com/mnif.htm.]
9. MIRACLE
II LIQUID SOAP
This is what I use for
showering or soaking in the tub. I like it. Got it from the health
food store. Nearly all soaps leave a film on my skin and here in humid
Florida at age 55, I feel sticky and sweaty. Miracle II does not make me
feel this way. For many years I used Shaklee Basic H for
bathing, but it's easier for me to go to the health food store and buy Miracle
II. Anyone else ever use this stuff? They don't really tell you
what's in it.
10. PAIN MEDS
(revisited)
From a reader--
"I really felt for
the reader from Kansas unable to get pain meds.
That was my story for 3 out of 10 yrs. following a move to another state.
I would break into tears in front of doctors & beg God to give me cancer
& a way out of this! I also spent 3 days in intensive care after a
serious suicide attempt. I am in good hands now & truly grateful,
but know that could change in a heartbeat if my Dr. moved & never take this
for granted. This is one of the reasons why I joined the American Pain
Foundation. Even if I can't be active, I always print out their
newsletters & try to stay abreast of legislature dealing with prescription
drugs, FMS & chronic pain. I have stacks of their information &
worldwide articles to make my case in the event I need to find a new
doctor. We have to appear strong & well informed when dealing with
the medical profession to be taken seriously. I think it really helped me
to do that when dealing with my doctor. I may feel like hell, but even if
my brains addled at appointment time I can hand them a file of
information!!! They're either interested or you go on looking! A lot
of that printed information has come from your wonderful site www.fms-help.com."
11.
NAESSENS' DISCOVERY
From a reader--
http://sonic.net:80/sentinel/gvcon4.html - "Has a major medical discovery been ignored? The
69-year-old Naessens is a French microbiologist who has created
what he calls the immune-system therapy 714X......The cycle of the somatid maps
how degenerative diseases occur, diseases such as cancer, AIDS, rheumatoid
arthritis, lupus, multiple sclerosis and any viral or degenerative disease such
as chronic fatigue. Diseases that have stumped medical research for
generations."
12. FOOD
CHEMICAL INTOLERANCES
From a reader--
1. About fifty additives
including colors (tartrazine, sunset yellow), flavors, preservatives and
antioxidants (sulfites, nitrates,
benzoates, sorbates, parabens).
2. Salicylates (aspirin
compounds) in a wide range of fruits and vegetables.
3. Neurotransmitters: free
glutamates (MSG) and amines (histamine, serotonin, dopamine, phenylethylamine,
and tyramine) in aged proteins or fermented foods like cheese, game and hung
meat.
4. Strong smells like chemicals
and perfumes, use of commercial cosmetics, mint products, aspirin and
NSAIDs."
13. QUESTION FROM
ROBERTA
"I have been dealing with CFS for 39
years. Although the episodes are getting farther apart (I haven't had one
in 5 years, I'm not sure why but am very thankful for the break), I woke one
morning to a fogginess that was all too familiar. I had been experiencing
different symptoms for about 5-6 months before I got the brain
fog. I hate that fog more than anything because as you
well know it is very difficult to be alert or wide awake and /or
cope when you have that. For me it lasts about 3 whole months.
I wake one morning and then it's gone until the next time it decides to come
back. In between those times I deal with symptoms of confusion,
extreme tiredness, memory problems, etc, etc, etc. You've mentioned them
all on your website. I have a very supportive husband who is constantly
encouraging me and understands what I am going through. God has truly
blessed me. The reason for me writing is I just had carpal tunnel
surgery a week ago while in this present episode of CFS and I'm
wondering if the general anesthesia that was administered
for the surgery will make all the symptoms of CFS worse and more
pronounced. Believe it or not at 55 years of age this is the first
surgery I've ever had. I'm also dealing with
menopause and wonder if both of these together just make
matters worse. I could really use some insight here on this. I have
learned to cope with CFS over the years so that I can actually live my life but
I am struggling right now. It just seems to be worse than
ever. As for medication from the surgery, the only thing I've had
was the anesthesia and some Motrin. As for what I take for the CFS, I take
Celexa 20 mg. and many vitamin, mineral and herbal supplements, not to mention a
good, healthy diet and regular exercise (except for very recently because
of the surgery). I do take other medications for other things; Lisinipril
for high blood pressure, Allegra and Maxifed for allergy and sinus problem, plus
I get allergy shots 1x a month, and Prevacid for acid reflux and a hiatel
hernia. I could really use some feedback on this.
Please if anybody has any insight on this I would so appreciate it. My
e-mail address is ramorrell@twcny.rr.com. Please put CFS
in the subject line of the e-mail. Thank you so much." -
Roberta
14. DOM'S
UPDATE
Okay, so here's what's going on with me lately. As
most of you know, I had a really unfortunate experience with being exposed to
toxic mold where I was teaching www.fms-help.com/mold.htm. After
mucho money (out of pocket) for doctors' visits, tests, prescriptions for over a
year, I was no better (extreme fatigue, breathing difficulty, chest pain).
Then a caring newsletter reader sent me the book MOLD WARRIORS by Dr. Ritchie
Shoemaker of www.chronicneurotoxins.com. Below
is my update....
I started taking 1 scoop of cholestyramine (CSM) every
morning beginning after Christmas last year. It absorbs mold and
cholesterol. The fatigue is definitely getting better - I am able to run
errands now with Donnie on Saturdays for hours without collapsing as
before. The visual overstimulation is getting better too - I sometimes
ride in the car without my dark sunglasses. But I am still extremely
sensitive to noise....loud noises (hammering, lawnmowers, loud music groups)
makes my energy just drain away - it feels like someone is punching me
down. I have to stay away from all loud noises.
Another drain on my energy is excessive physical activity
(such cleaning the oven last Friday - aaargh - you have to be a contortionist!),
or emotional stress from problematic relatives, co-workers, etc (which sums up
most of life...ha!)
Last week I bought a new mattress. Unfortunately, it
had a weird chemical smell to it and was also too hard. I took the store
up on their "comfort guarantee" and exchanged it after 5 miserable nights
and feeling wretched the next day. The new mattress is softer and I'm
sleeping so much better now---ahhh!, but the 5 bad nights of sleep took it's
toll, and I am still on "low batteries" today with my energy, but confident that
I will be able to get recharged eventually.
Is it any wonder Donnie calls me "HM" (which stands for
"high maintenance")....ha. I'm not
complaining - overall I am much better - particularly because the breathing/lung
problem has abated thanks to the CSM. My chest only gets a little
tight now when I am overly fatigued. I can control this with more careful
lifestyle management. To read a list of things I use (or do) for my
FMS/CFIDS, see www.fms-help.com/what.htm - might be interesting to compare notes. Also, see my
100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm. The
first one is to REDUCE STRESS........oh, how hard this is to do,
though!!!!
I teach music 4 days a week and play the piano for church
at two services on Sunday. We're planning a recital in April, and also I'm
singing in a 3-church Easter cantata. That's about all I can manage, and
I'm grateful to be able to do this at all!
An exciting thing happened this week - a magazine called
"Challenger" published my article "I Couldn't Sleep" in its
current issue (Vol. 46, No. 2). Challenger is a Christian magazine
that prints articles about real life problems, inspirational pieces, etc. -
kind of like Guideposts. In this article, I tell about how my sleep
disorder began, how I got FMS/CFIDS, etc. I was so happy they printed it,
because it will increase awareness of FMS/CFIDS.
I used to be clueless too! Many years ago, I
remember reading a story about a businessman who was suddenly cut down with his
health almost overnight - fatigue, pain, etc. He worried that he would be
unable to support his family because he just couldn't keep up with his
responsibilities. His illness did not have a name. I felt sorry for
him, but thought his condition was kind of strange. But now, after 25 years of dealing with FMS/CFIDS, I am a much more
compassionate, aware person, and I have thought about this man many times and
wondered if his mysterious illness was FMS/CFIDS and I wonder how he is doing
today??
Anyway, I am very excited about my article! This
particular issue of Challenger also has several great stories that were actually
more inspirational than mine. The publisher (Chinese Christian Mission)
can send Challenger to anyone who requests it, so if you want to read my
article, email me at dombush@bellsouth.net with your regular mailing address, and I will
send it to Challenger. The magazine arrives in a white
7"x10" envelope, so check your mail in about 2-4 weeks after requesting
it.
Well, that's about all for now. Although I am still
suffering from the "vicious" mattress and the oven-cleaning project, I hope my
chiropractor can straighten me out tomorrow. Well....it's time to go to
work. Today's schedule includes my usual piano
students, a recording project with a young lady trying out for the
County Fair, and a music rehearsal with three teenage boys working on
a song for church. As you can see, I have a fun life! I really enjoy
my work on days that I don't feel simply awful. Other days, it's like
slogging through mud up to the knees and trying to keep smiling....
Til next time,
Dominie
DISCLAIMER: I am not a medical doctor. I am a person
suffering from health challenges. The purpose of this newsletter 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 presented in
this newsletter. It is not meant to substitute for medical care nor to prescribe
treatment for any specific health condition.