Dom's "New
and Improved" Newsletter
September
9, 2009
A Christian-based newsletter for people with Fibromyalgia
(FMS), Chronic Fatigue & Immune Dysfunction Syndrome
(CFIDS), or Myalgic Encephalomyelitis (M.E.)
and their families.
I will be
making my newsletters much shorter from now on, but more frequent. My
newsletters in the past were WAY too long - last time there were 45 topics
www.fms-help.com/090109.htm - far
too much info for people with fibro fog! Below
is a SHORT
newsletter. Don't miss #11 - I am VERY EXCITED about
something that has made me feel NORMAL (yes, normal) for
the past 3 weeks. Could this help more of us, I
wonder??
11 SHORT TOPICS.
READERS' COMMENTS IN BLACK. MY COMMENTS IN
TEAL.
1. READERS
WRITE
"I have been reading your site, and it has
such great advice."
"Thank you so much for your support and
sharing all these years. It helps a lot to pop in on your website www.fms-help.com when my fibro flares
up and I need ideas to get steady again (or FEEL back in
control.) I'm usually silent but listening."
"I have read
some stories with some of the same info, but the fact that people called you
lazy or that you should see a doctor because maybe you're
making it up www.fms-help.com/fibro.htm."
"Thanks for keeping up the great
work! We sincerely appreciate it."
"I have fibromyalgia and have gotten so much
support, ideas, info and validation from your
site."
"Thanks, Christian fibromite, for all of
the research you do. We all benefit by your hard
work."
"A friend sent
me your excellent newsletter, which is a great help as I suffer
from FMS."
"Thank you for your wonderful
website. I am a CFIDS sufferer, not disabled, but finding myself
struggling to have normal days."
2. BURNING
MOUTH SYNDROME
From a
reader--
"A wonderful book to read is 'The
Fibromyalgia Dental Handbook' by Flora Parsa Stay, DDS. I got it
on half.com for 87 cents! I have “burning mouth syndrome” and
“geographical tongue”….acid makes both of the conditions worse. I have read that
since fibro can hit any part of the body the face may not be excluded.
Do any readers have “burning mouth syndrome” with their fibro and how
has it been treated? I did read that the toothpastes/mouthwash
have a product in them called sodium lauryl sulfate. It is an industrial foaming
detergent…many people’s mouth are irritated by the ingredients or they are
allergic to it."
FROM DOM:
If you have any idea how to solve the burning mouth problem, please write
dombush@bellsouth.net.
3. CPAP
MASK FOR WOMEN
From a
reader--
"I have found recenlty a new mask, designed
for womenll! It's
tremendous. The shape of it if more form
fitting for women, and there
is one for men. It hugs the cheek
bones, and does not put pressure on
the mask itself. They have
also come out with a new pillow. Again,
it's shape allows for
the indentations of the face, + mask...you can
now actually sleep on
your side with little of no discomfort.
Finally, someone is
listening, to people, and finding variables to
cope with the
machine. I've tried at least 40 masks over the last 8
years....this is the answer, and you feel comfortable when
wearing
this...It's great. Hope fully you can get them in the
States. I go
to Medigas in Canada, and they are really
supportive for all aids.
Hope this helps those who have apnea and want a
change from tugging
and struggling with the masks, and
pillows."
4.
EAR CANAL SWELLING
From a
reader--
"Have you ever had problems with your ear
canal swelling? I can only sleep on my left side. Because of that my
ear gets sweaty, and winds up itching and peeling. Most of the time I deal
well with it, but ever so often it swells almost completely. It's not like
a regular ear infection. No drainage or aching deep inside. Also, no
fever. I guess it would be classified as Swimmer's Ear. I was
wondering if you have dealt with it, or have heard of others that do. Any
home remedy suggestions? I'm taking my normal vitamins plus extra C.
I'm using vinegar and alcohol drops in my ear. Saline solution in my
sinuses, and Advil when the pain becomes unbearable. Haven't been to the
doc lately, but years ago alcohol and peroxide was the remedy. I used to
get swimmer's ear the old fashioned way, by swimming! I
use vinegar now instead of peroxide. It's not as harsh as the
peroxide, but just as effective. I have some Colloidal Silver.
I'll give it a try. Right now I don't think I can stand anything else
in my ear. I had read some blogs of other people who have FM and struggle
with this ear issue. Just thought you may have come across some other
info."
5.
ADJUSTING YOUR SLEEP CLOCK
From a
reader--
"Last year I had my days and nights mixed up
so I went to a sleep clinic for diagnosis. That doctor
just confirmed what I already knew....just like a baby I had my days and nights
mixed up. We had to reset my internal clock. You start out with
staying up all day and night the first day until the time you usually can fall
asleep (for me was 6:00 a.m.) Then you sleep until you waken
normally. You do that for 2 days then you move the time you go to bed to
7:00 a.m. Then again sleep until you waken normally. You move the
hour forward 1 hr every 2 days until you are going to be at a normal time.
It worked. Of course, I still don't sleep good but my body is at least on
schedule. The doctor explained that you can not set your internal
clock back....you can only set it forward."
FROM DOM:
Has anyone else tried this? I would like to, but have to keep working and
know I couldn't work while doing this. My insomnia battle began over 40
years ago www.fms-help.com/insomnia.htm. I have gone many days at a time with little or no
sleep. I just get more "wired and tired." I depend on sleep meds now
to make me sleep when I need to www.fms-help.com/what.htm. I don't schedule anything for mornings. Fortunately,
as a piano teacher, I can make my own hours. I only teach afternoons and
evenings. I have tried very hard for years to become a morning person, but
I just can't.
6. SWINE
FLU SHOT LINKED TO GUILLAIN-BARRE SYNDROME
7. AMAZING
"COINCIDENCE"
From a
reader--
"On your website, I responded to a blog from a lady with MS, ME, FMS,
Thyroid abnormalities, blood platelets abnormal….We are now e-mailing each
other. The most Godly thing happened. We learned that we live about 2 miles from
each other and attend the same church. I am trying to make a personal visit so I
can pray at bedside. Our God is magnificent in His mercy. I hope this brings a
smile to your face today!!!"
8. ANOTHER
SHOCKING WARNING ABOUT THE SWINE FLU VACCINE
9. NEWLY
DIAGNOSED READERS
Reader
1--
"I suffer from FMS; it started recently
(since November 2008) with insomnia and pains and the horror of taking
Lyrica. I stopped it as it did not help much and made me feel like
a zombie!"
FROM DOM:
My FMS started June 1982 www.fms-help.com/fibro.htm - and there's an interview at www.fms-help.com/interview.htm about those early days and years with fibro and how awful it
was. My sympathies to all of the newly diagnosed and probably
misunderstood, as well. For
those who want to see what other readers experienced with Lyrica, use the search
box at the bottom of this page and type in Lyrica. Then use ALT-F to find
the reference to Lyrica on those pages. I must say that Lyrica helped
reduce shingles pain this last time shingles tried to come back on me. I
took one only at night instead of the other pain killer (Lortab) which did
next to nothing to help. According to my internal medicine doctor, Lyrica
is for nerve pain. I'm not sure of its effectiveness for fibromyalgia
pain, though. I did try taking Lyrica for several days as an
experiment. I felt crazy in my head like "Hide the guns and knives,
everyone! I am feeling really weird!!" However, I am happy for those
for whom Lyrica has made a positive difference. But don't believe those TV
ads totally. They are misleading.
Reader
2--
"I found
your web page www.fms-help.com while
searching for any connections between immune system malfunction
and fibromyalgia. I am a [middle aged] woman in perimenopause. I have been
diagnosed with fibromyalgia by several independent parties (who did not know
about my previous diagnoses) over the past 20+ years. I purposely did
not tell new providers about this diagnosis because they refused to look at any
other cause for my symptoms, ridiculed my complaints and diagnosis, called me a
hypochondriac or used it as a wastebasket diagnosis, blaming everything
on the FM. There is a question of Chronic Fatigue Syndrome as
well, but I have not received a formal diagnosis. I am not even sure how one
goes about diagnosing it. I have constant malaise, fatigue,
chronic widespread pain, various other complaints and repeated
infections. At this point, I have been on antibiotics
for 2 and ½ months for a sinus infection that will not go away,
even with the help of fairly high doses of prednisone for the last month and a
half. I have also found that prednisone does little to relieve my
symptoms, not only of the inflammation form the sinus infection, but
also in relieving my arthritis pain. It seems that this cannot
be possible, but it’s true. I have fairly extensive damage to the
vertebrae and discs in my back and it doesn’t even seem to help with
that. I have
occasional days – one a month or less where I feel awake and energetic
and well. I am, by nature, I high energy individual in terms of my personality
and my need to be productive, but, as you probably understand, my body does not
cooperate with my intentions most of the time. I work eight hours a
day, take care of my home, pay my bills and have little energy left for anything
other than that. I am continually tapped out, on the edge of my
endurance. To me, a person who places a high value on living, not just
surviving, this is not acceptable. I yearn to feel well enough to do gardening,
hiking, volunteering and just to get through my day without feeling like I’m
going to collapse at the end of it. Since my immune system seems to have
worsened in the past year or so, I thought it was time to look at options for
dealing with this again."
FROM DOM: Oh, wow! Can I
ever sympathize with this reader!! Probably most of us can truly
understand her plight. This is why I keep my website www.fms-help.com
going! It has the latest research, lots of emotional support, and
realistic tips for coping with FMS/CFIDS from a fellow patient. Nearly
100% of my readers are articulate, intelligent, hard-working, bubbly Type A
personalities, that are just LOADED with talent and good things to share with
this needy world, but we have been sidelined by this "monster." A list of
things I use to keep going is at www.fms-help.com/what.htm. My
FMS story is at www.fms-help.com/fibro.htm and my
CFIDS story is at www.fms-help.com/fatigue.htm.
I am also about to reveal something amazing and simple that is helping me
now. Stay tuned. Hopefully I will put it later in this
newsletter. I stumbled upon this by accident, but it is making a huge
difference for me lately - it has to do with getting more oxygen into the blood and brain, as well as keeping your pH more
alkaline. This reader wouldprobably also benefit from
the immune shake I've been
using since 2001. It has been a mainstay for me all these
years.
Reader
3--
"I have been recently diagnosed after 3 or 4
years of [someone who has had FMS for years] telling me that FMS is what I
have. I am having such a horrible time with it and need
to find a doctor I think since mine has been in denial that
this is what I have for all of this time. A rheumatologist finally
diagnosed me, but turned me back to my family doctor."
10. "GOD'S
WAR ON TERROR"
From a
reader--
"Are you studying Daniel and the book of
Revelation right now? [FROM DOM: Yes,
our Sunday School class is at MBC.]
There's a video online about demographics that blows me away! In 5 years
the dominant religion of the planet will be Islam. I highly recommend that
you buy, read, and lend to your friends this book: “God’s War on Terror”
by Walid Shoebat and Joel Richardson. You WILL NOT be disappointed that
you bought it. I suspect you won’t be able to put it down and as you’re
reading it you’ll have a list of family members in mind that you want to lend it
to. Available on Amazon. The book is written by a former VERY
radical Muslim who converted to Christianity years ago and his perspective is
like none other. No American author can offer this
perspective."
FROM DOM: I have
included this suggestion from a reader because we are living in the last days
before the return of Christ (see Matthew chapter 24, Daniel and Revelation), so
we may not have to worry about FMS/CFIDS/ME much longer! Most important is
our eternal destination. A lot of changes are about to happen in the
world, and we need to stay close to the Lord in our personal lives and stay in
His Word.
11. DOM'S
UPDATE
I am sooooo
excited about something I found 3 weeks ago while researching a suggestion from a reader regarding immuno-deficiency. I was looking for help for cold sores and shingles (miserable curses!), but on the same site I found these drops that you put in water that
alkalize and oxygenate your drinking water. It is
SO EASY TO USE!!! I love this stuff! My
husband always said I needed more OXYGEN! I even
asked my doctor about it last year. I wanted to see if oxygen would help
me, but he wouldn't prescribe it and said my blood oxygen was just fine.
However.....this week, I heard from another
reader who said her doc checked her blood oxygen in the office and then
again after she walked up a flight of stairs. It fell from about 94% to
84%! He was shocked! This is probably why people with
CFIDS feel WORSE when they exercise! (I've got lots on that
subject on my homepage www.fms-help.com.)
There is new
research that FMS/CFIDS is also a cardiac problem - our blood
volume is low and our heart is small. When stressed, we
can't get enough oxygen to our brains. This would explain
fibro fog.
Well, on with the
story......
I became interested in
pH and alkalization 20 years ago, but never found an easy way to do it.
These drops that you put in water are the simplest way to
alkalize your pH and also oxygenate your body. They are making a wonderful
difference in how I feel. It is soooo EASY to function when you are not so
acidic and when you have enough OXYGEN in your system! (Acid causes pain
and disease.) I'm not a doc or scientist, just a patient who has
suffered since June of 1982. I use many things
to help me get through my days and nights. I am a busy piano teacher
www.fms-help.com/students.htm and church
musician. My complete list of helps is at www.fms-help.com/what.htm.
These alkalizing and oxygenating drops are
wonderful (click on the link, then click Oxygen at the top of the page). I don't feel like I'm dying anymore, or on the verge
of collapse, or that my brain is short-circuiting (fibro fog), or that
my heart is about to explode. These are
all horrible, debilitating feelings I suffered with on an
almost daily basis, particularly when under stress (even good stress).
Although
I've had an extremely busy 2 weeks with a family tragedy,
stay-over company, many new students, loads of preparation for church music
performance, running around doing errands with my husband, etc., I have felt
FINE!!! I even stayed up with our company talking until the wee
hours Sunday night and didn't suffer any ill effects. (Of course, I
don't get up early - haven't for years.) My health is far from perfect,
but these drops have helped me with the symptoms described in RED above. It is so EASY to take care
of your work and family responsibilities when you feel "normal" and not totally
wasted! No wonder "normal" people wonder what's wrong with us! (Now if only I could sleep without meds, I'd be a totally
happy camper!) BTW, their stuff for cold sores (herpes
1) is working great too.
'Til next time,
Dominie
dombush@bellsouth.net
II Corinthians 1:
4 - "Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue
Syndrome sufferers and their families.
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