DOM'S
NEWSLETTER
November 27,
2007
"Telephone - Telegram
- Tell Dominie"
A compassionate and
informative newsletter for people with fibromyalgia (FMS), chronic fatigue
immune dysfunction syndrome (CFIDS) and myalgic encephalomyelitis
(M.E.)
Don't miss:
#4 HUSBAND DOESN'T UNDERSTAND FIBRO
- educate your family
#6 BROKEN BRAIN -
hypersensitivity
#7 CHRISTMAS TREES -
source of indoor mold?
#13 HYPERBARIC OXYGEN
- helps some fibromites sleep<
#16
DOM'S UPDATE - Christmas CD available
1. READERS
WRITE
"Thanks so much for putting out this
newsletter... it so helps to know I'm not alone in this
battle."
"Your site www.fms-help.com is fantastic beyond words, I read every bit of it, and
even after 14 yrs of having CFIDS/ME/FM, I'm amazed that there's still a LOT
that I don't know!"
"You have been a god-send...many
thanks...referring your newsletter on to others."
"Thanks for your wonderful caring
website."
"This site is great . You have
helped with all the information you give out. I have passed this on to my
friends with fibro."
"Your site and the work you do is
wonderful. Thanks!"
"Whenever I am discouraged,
I know that I can pull up your newsletter and not feel alone."
"I always look forward to
your newsletters and update emails."
"Thanks again for putting together your
website to help others, it really makes me feel like I'm not the only one
out there who has this crazy illness."
2. STRESS
- OUR ENEMY
Reader
1--
"I am near the end of a slide, after a
daughter’s out of town wedding, expenses of course, at a time when
even keeping the house is “maybe,” in-laws staying with
us before, during and after the wedding. My D.C.
has been sending me around to other specialists since a March car accident, when a gal didn’t see a stop sign and spun me
around----just After I had “recovered” from a
beginning of the year with a daughter trying a home birth, needed an emergency C-section, 11 days after her husband broke
his femur…… Somehow the Lord gave me something to stay
in the hospital overnights with him, and take care of
her—and the new baby. Just when I thought I was going to pass out!!!
My church group came through with meals for a
month----but I digress. I had been going to my
appts on schedule, then we got hit with some kind of bug (I take care of
my grandson a few days a week)—a week passed by and I
went back before the wedding, well she let me know
just how annoyed she was with me and that my PIP benefits might run out if I didn’t keep coming at least twice a
week. Sooooo after the wedding and the family staying
here, I was SPENT and spent a week in bed. You would not
believe how she went off on me. It was way beyond anything, well, I started bawling and she said that I was a drugged up
mess, she treats hundreds of fibro patients and
she had never seen anyone as bad as me. I have been going to her for 3 yrs, she has done accupunture, she also does nutritional
counseling, and she suspected I had an allergy,
had me tested, and lo and behold, I have an allergy to wheat, rye, oat, barley---I stopped
eating any thing with those ingredients And 70 lbs
melted off my formerly fat self. (I had be average weight until meds.) So after
that, I drove home in a fog after she administered the
most painful physical range of motion re-evaluation
EVER administered! There were another 3 days down the tubes recovering from that. Meanwhile If I don’t somehow find
a way to sell a house, we will lose the house.
Know that you have many, many, many, prayers going up to
our heavenly Daddy for you, He never intended for
us to have to carry these burdens, and one glorious day we will be free."
Reader
2--
"I have suffered from FM since age 14, am now
38. There is no easy road and I am with you in the fact that you seem to
notice how much suffering you endure all the more when you have a few good
days/weeks/months and felt "normal" for a while. I was so pleased you had
been feeling so good recently, it was a joy to see that after all you give back
to everyone, that you were feeling much better. Stress I'm
convinced plays the biggest role in FM, how we cope with things is so unique,
but I often ask why does my body let me down, why doesn't it work like
others. The most terrible comment is one you get and mentioned in your
last update - "but you look fine"...it is so sad, I often said I would
get an FM cast and walk about with it on everywhere that I hurt. I hope
you will feel a bit better soon. I have tried everything, and have finally
found, in the last 3 years, the most amazing homeopath (classic homeopathy) who
is working with me and has done so much good. Still a long way to go, but
many, many days, I am human once again. I wanted to write to say keep your chin
up, and try to get some rest and let your body rejuvinate. Don't do the
newsletter if you don't feel like it....just think of you for once. Your
husband, who sounds like a very special person, is right - slow down and let
your body try to rebuild. Us FM types are always A+++++++++
personalities, which of course makes relaxing very hard! Keep
your strength up."
Reader
3--
"I've had Fibro since 1980, I am now 51 years
old. And finally I understand it better. I finally got my life
back. I still have the pain at different times. Stress is a
big part of it. I have pain all the time but its not a 10. its
down to 1-3 at times."
Reader
4--
"I can’t tell you how many times I
have let myself overcommit to jobs, projects, etc., only to be slammed health
wise. The worst was in the early 90’s when I kept working on top
of a cold, pain, fever, etc. and I ended up in the hospital with a lung
infection that they had a hard time diagnosing. My fever spiked over and
over to 106. They kept medicating to bring it down. This was the day
after Christmas, when I had just planned to finally relax and rest.
I have a very difficult time saying no (do you
suppose this is common in us musicians?) but have bit the bullet this year and
pulled back away from performing at my church this year. I hate to do it,
but my symptoms have worsened this summer and I’m now about to undergo testing
for Sjogren’s, Lupus, Carpal Tunnel, more Neuropathies etc. All I really
want to do this holiday season is sleep. I’m listening to my body this
time. I’m hoping an “easy Christmas” will be just the
thing."
3.
DANGERS OF ARTIFICIAL SWEETENERS
From a
reader--
4. HUSBAND
DOESN'T UNDERSTAND FIBRO
Below are some links on
my site that I sent to a reader whose husband is unsympathetic toward
her fibromyalgia. Hopefully, she can share some of these articles
with him. Most of us with FMS/CFIDS have had to "educate" our family, friends
and co-workers (assuming we are still able to work!) about our illness - it's
chronic and it's invisible - and not like we have a cast on our leg or anything
that would generate sympathy--
5. FRIENDS
WHO DON'T UNDERSTAND
From a
reader--
"I do think that the hardest thing to deal
with is people's comments. I am soooo sorry that on top of feeling like
ugh, you have to endure criticism for trying to deal with a
sickness. Also, give yourself credit that you are probably putting
in 5x the efforts daily to do your chores as this person who
loves to give 'advice'."
6. A
BROKEN BRAIN
Good advice from a
reader--
"I figured this out years ago when I was in
nursing school and had my umpteenth crash (which would have
been maybe my fourth or fifth major one) that the hippocampus
had to be involved. I made the mistake, though, of letting
each crash become worse to the point where I made it impossible to get back to a
pre-crash level of activity, and I have no idea how long it will take
me this time since even though I'm not working at a job outside the home, I have
a ton of stress on me with things breaking, financial, trying to keep up with
the disability paperwork, etc.
In fact, I feel worse than I did a year ago at this time and my doctors
tell my I am getting worse. I know I am. I am more hypersensitive to
noise, lights and activity/stimulation than ever before and my brain is
completely broken. I think I pushed too hard too long and am actually afraid
that I will never even get back to being 50 percent of what I was. This is why
it's so important for people who say that they intend to push themselves not
to.
I know from the way my speech is, etc., that my IQ has plummeted. I am
dizzy most of the time, including while sitting here trying to write this. Words
24/7 zig and zag and I feel drunk, which I'm not. How much worse do people want
to make themselves? I cannot leave my home most of the time because I am afraid
to drive due to getting periods of amnesia in which I forget how to drive,
blacking out, etc., which I didn't have the last crashes I had. Do they
want to be like me, stupid and house-bound? How much pushing do they want to do?
How bad a crash do they want to be in? I truly feel like, with my brain, I
am retarded. I cannot even describe how I feel now so I have to go onto other
sites and get words from other people because I can't put words together the
right way to make sense. I am so dizzy now, I have to stop."
7. CHRISTMAS TREES &
MOLD
Could this at least partially explain the
rise of respiratory illnesses in December and January?? We usually blame
the cold weather, excessive social activities, holiday stress, etc. I
worked in toxic mold in 2005 www.fms-help.com/mold.htm and became desperately ill with a severe respiratory ailment for
nearly 2 years. I finally found help with a lung supplement that I
still take faithfully. I have learned to be very careful of mold -
even gave away all of my houseplants (to a grateful neighbor) during this time
because of mold in the damp soil. Hated to do it, but you gotta
breathe!
8. HOMEOPATHIC
REMEDIES
From a reader--
"I want to report back on the homeopathic treatment I have been receiving
for about 3 or 4 months now, which I am happy to say seems to be
working
well. What I would like to stress is that fibro sufferers
must go to an
acknowledged and well-qualified homeopathic doctor,
one with lots of
experience - and must definitely not try to
self-medicate. When I first
visited my doctor (in Cape Town, South
Africa) in about August this year
(2007), I was suffering with all the usual
fibro symptoms and most
pronounced was the all-over inflammation - pains in
all joints and
muscles and tissues. He first treated me with
Bryonia and this had a
slight positive effect. From that we
moved onto a mystery remedy (he
hasn't revealed it to me
yet) and after that changed to Cimic. This has
had a
brilliant effect - my pains have all but disappeared, except for
the very
bad low back pain and hip pain that I have had since I was 19
years old (I
am now 41). We're now treating the depression component of
the syndrome with Aurum (started last night, so can't
report any
improvement yet) and my doctor is very sure that it will help
with my
back pain as well. I think it is wonderful that my
body pains have disappeared. I have
still had trouble sleeping (was taking
sleeping pills every night and
waking up often all the same) but last night
did sleep well for the
first time in ages (I have been going through a
hellish time at work
with huge pressure, my worst time of year with
publishing deadlines for
2008 - proud to say, mostly met despite major
moving of goalposts from
powers that be...) Will continue to
report back on the effect of Aurum, which will
hopefully
lift me out of this horrible black doldrums that I find myself
in; and
perhaps will even have an alleviation of back pain."
9. FIBRO PEN
PALS
"I have responded to several people who are interested in having and being
a penpal. I just realized that I have a problem and some people might be
feeling ignored. I have been responding to each person who has written to
me. However, in its infinite wisdom, AOL has been putting some of
my penpal responses in the spam folder. I need to let everyone
know that if they are interested in being a penpal that they get to be one and
that it is AOL's fault if they haven't been responded to. I'd like to get
names of anyone who hasn't heard from me so I can respond and compose a complete
list. Can you help me with this? No Fibromite needs to feel left out
of anything, especially this!!"
10. DAMPNESS CAUSES
PAIN
From a reader--
"Tussen DM sure works well for me. No narcotics in
it either and cost a bit less .But I have to say anything is worth the cost when
it helps us Fibromites ..Our weather has been very cool and damp, with high
humidty , and I am such a flare - it's awful. I went to my son's today for
dinner and he lives borderline with a dam in a low valley. I had to leave after
four hours there, I just could not handle the pain from the
dampness."
When my fibro pain was really bad for many
years, high humidity always made it worse. I live in Florida, where it is
extremely humid most of the year. Fortunately, I have no fibro pain
anymore. I still suffer at times with the fatigue and depression,
though, which I believe is caused by the sleep disorder I've had for 40
years - that story is at www.fms-help.com/insomnia.htm. A list of things I use to make my life more comfortable is
at www.fms-help.com/what.htm -
scroll halfway down and I have a list of things that helped me get rid of
the pain - we are all different in what helps us. Interestingly, I
have readers with fibro who live in dry climates like Arizona, and many
readers are in the UK where it is damp and cold much of the
time.
11. SOY
BAD?
From a
reader--
12.
INOSITOL & GLYCINE
From a
reader--
"I would like to remind you readers the
effectiveness of a couple of items:
Inositol = a form of
vitamin B, is very relaxing. It is amazing how quickly it
goes to work to calm a person, good for the liver too. It is cheap and
it's best to buy Jarrow brand and take a level teaspoon. It is sweet
tasting.
Glycine = is another amino
acid that has many benefits. It also is sweet. it helps increase the
glutathione levels in the body. It protects the DNA and RNA and stores
energy for later use."
13.
HYPERBARIC OXYGEN
Got this link
from a
reader--
There are some
really interesting stories at the end of this article about people with
FMS/CFIDS being greatly helped by hyperbaric oxygen treatments. However,
there are some risks, so please if you consider this, read everything on the
site about the pros and cons. If you have tried hyperbaric oxygen for
fibromyalgia or chronic fatigue immune dysfunction syndrome, please write me
dombush@bellsouth.net.
Some fibromites said they were able to sleep again!! That sounds
heavenly!
14.
INFRARED SAUNAS
From a reader--
"I have been taking far
infrared saunas and can barely make it home to bed and do sleep the night
through."
15. FIBRO
& FATIGUE CENTERS
From a
reader--
"I attended a free seminar at the Fibro
& Fatigue Center in my area. They believe FMS is caused by a virus
or hormone imbalance.The appointments are very
expensive $399.00 each for the first two.Lab work is extra. The first
appt consists of going over medical history, a brief physical exam and extensive
blood work. The second appt. reviews your lab work and a treatment plan is
formulated for you. At least 2 more follow-ups are required at a cost of $199.00
each. This does not include any IV infusions which they recommend(again, very
expensive) or supplements that they sell.They do not accept insurance but will
provide you with a Super Bill that you can then forward to your insurance
company and see if you are covered by an out of network provider.For me, that
means a large increase in my deductible and still paying for a large percentage
out of pocket.My husband thought the cost was too expensive- I would love to
just find a fibro-friendly doctor in my area but perhaps this
information might be useful to someone else."
16. DOM'S
UPDATE
I have been feeling
well again for the past two weeks ever since I got rid of
some heavy stresses in my life. (If only it were always that easy!) I made a nice
Thanksgiving dinner for my family. Cooking is not my forte, so I
was happy that everything turned out well. I had no fibro fog
or fatigue to slow me down and confuse me while cooking, which
actually involves a lot of mental steps....you never really think about it until
you experience fibro fog and can't think clearly to do even simple
tasks!
Last week I made a great little
CD with 20 traditional Christmas carols ("Silent Night,"
"Joy to the World," "Angels We Have Heard on High," "Go Tell It on the
Mountain," etc.) I played these on a brand new state-of-the-art digital
piano that had many exquisite sounds! I loved how
it turned out! If you want a copy, please write
dombush@bellsouth.net for details. I can mail the CD to you in plenty
of time for the holidays. I have been playing the piano
for over 40 years, and I teach and play the piano for a living
www.fms-help.com/students.htm. I think you will enjoy this beautiful music.
In 1990
when my fibromylagia was horrendous www.fms-help.com/fibro.htm,
I thought I would have to stop playing the piano because it caused such severe
lingering pain! Then in 1996, I began to find things that
helped me. A list of things I currently use is at
www.fms-help.com/what.htm.
I keep this list updated. I would not be functional without these
things. Everyone is different as to what helps
them. It involves a "trial and error" process. Right now there is no
single "cure" for FMS/CFIDS/ME that works for each and every person who is
afflicted, although I sure wish there were a "magic bullet!"
The purpose of this newsletter is so that we can share our
unique experiences about a poorly understood illness and lend support to
eachother. Only those of us with FMS/CFIDS/ME
understand what it's like to have
this! It has been my privilege to share information and
research with other fibromites for the past 11 years. I plan to
keep my site www.fms-help.com and
newsletter going as long as God gives me health and strength to do
so.
As we enter the holiday season, we fibromites need to be really careful
about unnecessarily stressing ourselves. (See Topic #1 above
about stress, our enemy!) Try to make things easier and simpler! Donnie and I have had to decline some invitations to seasonal gatherings
to maintain our health and sanity. It is very easy to become so overloaded
and overcommitted that we can't appreciate the simple joys of
Christmas.
We miss our loved ones who have passed away even more acutely
during the holidays, when in times past we enjoyed their loving presence.
The holidays just don't seem the same without them! I wrote an article
called "Christmas Blues" several years ago at www.fms-help.com/Christmas.htm. I really miss my dad www.fms-help.com/eulogy.htm
who left for heaven in 2005. But then I remember that Christmas is really
about celebrating the birth of Jesus, the Savior, who made His home with us for
a time so that we could make our home with Him eternally. So I want to
focus on the "Reason for the Season." He is the source of our joy and
hope, no matter what blows, disappointments or hardships life may
have dealt us. I wish you all a peaceful holiday season.
Til next time,
Dominie
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE
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.
