DOMS' NEWSLETTER
Saturday,
Sept. 19, 2009
A
Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue
& Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.)
and their families.
12 TOPICS. READERS' COMMENTS IN BLACK. MY COMMENTS IN
TEAL.
1. READERS
WRITE
"I love your newsletters and they are a great
comfort to me."
"I want to tell you how much I appreciate your website
www.fms-help.com. It is so great!!
You are incredibly organized."
"Your newsletters are always
great!"
"Thank you for sending your wonderful newsletters as
they are very informative."
"I so enjoy your newsletters
:)."
2. NO SYMPATHY FOR
FMS/CFS PATIENTS
Reader 1--
"My heart goes out to that woman
who wrote about her husband not understanding her fibro
pain. That would be so upsetting, especially coming from a
husband -- the one we hold dearest and we want to understand us the
most. Recently I had a similar experience with my
[close relative] that absolutely shocked me.....last week we had a conversation
that left my mouth hanging open. She told me that [years ago] she was
diagnosed with CFS. I am almost certain that she was not -- that was
during the time when the drs. misdiagnosed her with cancer. And I know I
would have remembered her being diagnosed with CFS, since I'd had it at that
point for 3 yrs. She went on to tell me that she just pushed
through it and didn't let it get her down. And that basically she
thought I should do the same thing .... get out and ride a bike like she
does for 45 min. a day. (It was at this point that my mouth
dropped and I was almost at a loss for words). I explained to her
that I couldn't even ride a bike for 2 min., much less 45. I also told her
of times when I've just been out shopping and had to stop and sit down ON THE
FLOOR on the side of the aisle or otherwise I would faint or my legs would have
just collapsed if I'd kept going. She said she had that happen to her too,
but she just kept pushing because NOTHING was going to get her
down. She told me it was basically just a "thinking"
process and she had the personality that wouldn't let her stop.
As you can imagine, this really hurt me ..... and it made me think she
didn't know or understand me or my personality at all. I'm a complete Type
A personality, which I believe is partly what got me into this situation of
burn-out. To this day I still push myself, but even after
20 yrs. of CFS/fibro, I'm learning my limitations better. But that doesn't
stop me from pushing, as my husband and family can testify to. They see
the results of when I've pushed and how I become so tired for days afterward
that it's even an effort to breath or speak."
FROM DOM: See my page at
www.fms-help.com/misery.htm - CFS has one of the highest morbidity
rates (degrees of suffering) of any illness, rivaling the physical misery of
advanced cardiac disease and cancer. Another good page
to check out is www.fms-help.com/trying.htm,
about why "trying harder" will not help CFS
patients!
Reader 2
(male)--
"I was touched when
reading about the lady whose husband made the statement "other people just
deal with pain and get on with their lives;" ... I know exactly what she
is talking about and it is horrible when loved ones and even med professionals
make statements, or even body language to that effect---as if we are
stupid."
3. COLD
SORES
From a reader--
"i am writing to you about the link you put out for putting
oxygen back into our body - it truly works - i have been using
those drops for about 3 years now and have had only one cold sore outbreak - you
have to be faithful to it - do exactly how they prescribe you to do it
- i have suffered from multiple coold sores all my life and since i have
been using this product it has been "heaven" and an "answer to prayer"
- i use the drops every day - i hope you aand anyone else who has the herpes
virus has the same success - along with this eating an alkaline diet as much as
possible helps even more - virus' cannot live in an alkaline environment -
that's why when we get sick or have all these health issues, just checking ones'
self out to see just how acidic you are will be an eye opener - well, i hope
this will help your readers."
FROM DOM: That's
great!!! I have been using the cold sore package
(oxygen drops, DMSO cream that smells sort of like roses, and read the book
too). I am sooooo
very thankful for the reader who directed me to this page recently! I
have battled severe recurring cold sores for 10 years. Their program is
awesome! Also, the oxygen drops have helped me not "crash" or have
"brain fog and fatigue" for a month now. So easy to use by putting it
in your drinking water and sipping throughout the day.
4. READER MISSES
CHURCH
From a
reader--
"It is really difficult for me to get to church due to my
illnesses - if i do go i end up with a BIG flare up and massive migraine. Don't
know if that is because of the strong lighting, the loud music or having to
sit/stand in the one spot for nearly 2 hrs - maybe a combination of them all. So
at this stage i get my 'church' from listening to preachings on a Christian
radio station each Sunday morning and from our churches web site where they have
just started a podcast of the meetings. That only gives the message though -
none of the praise and worship which i really love. So i get that from my (quite
large) collection of cd's"
FROM DOM: I had the same
problem for years (1982-1996) before I found some things to help my awful
fibro problems. It was torturous to sit through church services
- and also all the getting up and dowwn to sing, etc. I felt like
a 90 year old lady when I was in my 30's www.fms-help.com/fibro.htm.
And I could barely sit still through a service, I was so miserable. I am
so thankful to be able to be in church regularly again without suffering - my
only problem is the extremely bright lights facing the platform that shine in my
eyes throughout the service.....I wish I could wear a visor! (Remember the
book "Too Loud, Too Bright, Too Fast, Too Tight" mentioned in a past
newsletter!) For those who are homebound, it's
great that we have Christian radio and TV for our edification, but be
careful who you listen to, that they are teaching sound doctrine. Some of
these TV preachers beg you to send them money....like to get an "anointed"
prayer cloth for your healing, or so you will get financial blessing back!
Oh my! That's just awful. As our associate pastor said,
if they are so close to God and "the blessing spout" (my words), why do
they need your money?? I know God understands when we cannot be
in church with other believers, but it is also hard to keep a burning coal hot
when removed from other coals. We are not supposed to forsake the
assembling of ourselves together - but if we are disabled and can't, then take
comfort in what Jesus said, "Where 2 or 3 are gathered in my name, there am I in
the midst of them." Even if there is one person in your home or community
that you can fellowship with, Jesus is there. If nothing else, stay in the
Word, hear some good preaching (there are even sermon podcasts online now)
and continue in prayer. It is my desire for this fibro newsletter to be a
place of loving, Christian understanding - not just another health
newsletter - there are plenty out there already. Keep your eyes on Jesus
- the Author and Finisher of our faitth! Oh, one more
thing. Even if you can't be in church, be sure to send in your tithe
(10%). I believe the tithe should be made to your local church (one that
preaches the gospel). When you are in need, someone on TV will not
come help you, and you can't go talk to them, but your local church needs your
support. It saddens me that so many local churches are suffering
financially, while mega-churches on TV are taking in tithe money. I heard
one popular preacher say things on TV the other day that were just
plain wrong! He said passionately, "Your greatest blessing is just
ahead of you....Why, just last week one of the people (in his 30,000 member
church) inherited a million dollars!" Isn't it interesting that he equated
blessing with money?! When you think about it, even your unsaved neighbors
have the same standard of living that you do - whether you are rich, poor
or in the middle class. The Word says we are blessed "with all
spiritual blessings in heavenly places in
Christ" (Ephesians 1:3). I was thinking of the poor soul
languishing in a filthy nursing home for years who was listening to
that sermon on TV....is their greatest blessing really just ahead, like
next week?? Are they going to inherit a million dollars? (Well, if
they die and go to heaven, now that would be a blessing!) And
what about people in undeveloped countries like Haiti? That kind
of message just doesn't match with reality. OK, 'nuff said....I'll
climb down from my soapbox now.
5. DR. RODGER
MURPHREE
From a
reader--
"Last night I listened to a teleconference given by
a chiropractor named Dr. Rodger Murphree from Burmingham, Alabama. He closed his
chiropractic practice and now specializes in Fibromyalgia. The call was called
"What Your Doctor Won't Tell You About Adrenal Fatigue and Your Thyroid." Dr.
Murphree is a non-allopathic doctor and does not use prescription meds to help
his patients heal. The call was very enlighteneing and he gave a few
websites I wanted to share with you to check out.
The first site which has his office contact
info is www.treatingandbeating.com and I
would highly recommend you view the VIDEOS there first before doing anything
else. They are of a Conference he did for other doctors. There are 9 of them and
they are each between 5-10 minutes in length. So much explanation in just
this short time and he explains things so that anyone can understand
him.
The second site is www.fmsadvice.com and you can request and
download a Sleep Report called Fibromyalgia and Sleep. I believe it's 21 pages
in length. I have not yet read it but have read some of the info from his
site and the information is eye opening.
The third site is www.adrenal-report.com. More information
on everything here and some of the supplements he sells that his patients have
seen great results on. He does say it doesn't matter if you purchase them from
him or somewhere else, just be sure to get a good, high quality one. There are
several simple tests he gives in this website where you can check to see if you
have adrenal fatigue.
The last site is www.hypothyroid-help.com. I have not yet
gone through this site, so much info on the others, but I will get to it.
I know I'm sending you an overload of info,
but if it can help someone beat this, then it is well worth taking the time to
forward the info.
Let me know what you think after you have viewed
the Videos, as I mention, those will give you a 100% view of what Dr. Murphree
and his mission is all about!!"
FROM DOM: I have
had some wonderful correspondence with Dr. Murphree years ago. He is such
a kind person! In fact, I used his adrenal cortex supplement and some
others for awhile when my adrenals were burned out from stress. I have
several of his books. His site is VERY helpful and he is DEFINITELY on our
side! It is sooooo refreshing to hear a medical
professional who totally "gets" our problem! However, there are so many different theories about
FMS/CFIDS (e.g., Dr. Cheney, Dr. Lowe, The Fibromyalgia and Fatigue Centers, Dr.
Teitelbaum, etc.) I have been researching for 13 years. Depending on
who you listen to, you start thinking, "Yes! That's the cause of my
problem .... their 'cure' makes sense!" But then you find out it's not
really a cure. However, there are things you can do to help yourself feel
better through meds, supplements, lifestyle changes, etc. My current list
of what helps me is at www.fms-help.com/what.htm. Also,
see my 100 Tips for Coping with Fibromyalgia and Insomnia www.fms-help.com/tips.htm. But back
to Dr. Murphree....he is very kind and sincere, uses natural
remedies, and sure does understand us! With all the jerky doctors out
there insulting us, Dr. M. is absolutely refreshing. See my good docs
/ bad docs page at www.fms-help.com/doctors.htm.
6.
SAVELLA
Reader
1--
"I have also just started Savella. I'm having some nausea
problems & am "ramping up" slower than the one month sample pack that my dr.
gave me says to. That helps. We have to remember that we're all
different in how quickly our bodies adjust to meds, too. For those who
can't afford it and qualify, it's available through the manufacturer's Patient
Assistance Program: http://www.forestpharm.com/pap/. It's not on the list yet, but I called and it is
available. Full prescribing info, in a font that's actually legible:
http://frx.com/pi/Savella_pi.pdf."
Reader 2--
I’ve tried every kind of med for
fibro except Morphine and Methadone. Most all controlled substances have a black
box warning…..It’s required by the
FDA.
Please don’t be afraid to at least
give Savella a try. You can stop it at any time! Before the FDA passed it here
in the U.S. it has been helping sufferers in the UK for many
years.
Honestly, I was despondent with the
fibro pain being at 7-9 …..24/7/365. I gave up on my Rheumatologist and went to
a pain specialist. They have more of an understanding of pain levels and won’t
chastise you if you say you are still in a high pain range with any pain med….no
matter how high the dose is. Long story short the Pain Specialist started me out
with a “dose pack” of Savella. When you get to the end of it your dose is 50mg
a.m. and 50mg.p.m. After 2-3 weeks my pain level went from 8 down to 2-3!!!
Truly miraculous. However, a few days later I started on a central nervous
system depressant called Clonazapem for “burning tongue syndrome”.The Savella
did not help that neurological issue. I am very aware that what may help me may
not help you.
Savella is an
antidepressant so you need to be aware of a condition called Seratonin toxicity.
This would happen only if you were on too many meds that raised the serotonin
levels in your brain. You can look serotonin toxicity up on the internet. I had
to stop taking my Melatonin supplement at night because it too raises the
serotonin levels. As you know we have to always be looking at the side effects
of meds and interactions between the meds.God bless…I’ll say a prayer for your
comfort right now."
7. VITAMIN D FOR PAIN
RELIEF
From a
reader--
"Some recent studies have indicated low vitamin D
associated with increased pain. I just saw one of my fibro patients
yesterday who was tested for vitamin D deficiency and was indeed deficient. she
was then started on prescription vitamin D by her physician, and yesterday, she
reports her pain is now better. I just thought I would let you
know."
8. WEATHER, ALTITUDE,
& FIBRO
Reader 1--
"I live in a sonoran desert at 0 degrees
altitude( PHX, AZ). When we start our Monsoon season the barometric pressure
rises and the humidity rises also (contrary to what people say “but, it’s dry
heat!”). My fibro symptoms start to flare up to a day before the weather
changes! If it rains, my body pain increases consistently. I wonder if the
brain swells with the weather changes and is responding to the humidity etc and
sends off more weird pain messages to the already miswired fibro brain????Any
ideas on that? When I visited back east ….my goodness…my pain level went
sky high. Of course it was cloudy or raining."
Reader 2--
"A change to a lower pressure will cause the aggregation
of platelets,. This will release serotonin from these cells. One way to
counteract this is with peppermint oil. Here is a link to that
abstract. http://www.ncbi.nlm.nih.gov/pubmed/3715814
There was one experiment that looked at the free serotonin in the jaw muscle.
The conclusion was that more serotonin in its free state corresponded to more
pain in fibromyalgia. Now, if we assume that somehow serotonin in its free state
is related to the pain of fibromyalgia, then there are several things you
can do to prevent the serotonin from going into its free state. These things
are 1. get rid of allergies and infections. 2. clear up the
gut 3. get rid of physical and mental stress 4. get more
magnesium. 5. use taurine 6. use a small amount of fish oil (not too
much) 7. avoid polyunsaturated oils in the diet. (instead use olive, coconut,
palm kernel oil, and organic butter from grass fed
animals.)"
9. A TYPICAL FIBRO
EXPERIENCE
From a
reader--
"This illness has kicked my butt.
There are so many of us. We all think we are going to
beat it at first if we do all the "right" things. But life has other
plans!! Besides not finding a miracle cure, I have spent thousands of
dollars looking for the cure. Also I had to retire [from a job I
loved]."
10. THE HUSBAND
STORE
From a
reader--
"The Husband Store, a store that sells husbands, has
just opened in New York City, where a woman may go to choose a husband.
Among the instructions at the entrance is a description of
how the store operates. You may visit the store ONLY ONCE! There are six floors
and the attributes of the men increase as the shopper ascends the flights. There
is, however, a catch.....You may choose any man from a particular floor, or you
may choose to go up a floor, but you cannot go back down except to exit the
building!
So, a woman goes to the Husband Store to find a husband.
On the first floor the sign on the door reads: Floor 1 -
These men have jobs and love the Lord.
The second floor sign reads: Floor 2 - These men have
jobs, love the Lord, and love kids.
The third floor sign reads: Floor 3 - These men have jobs,
love the Lord, love kids, and are extremely good looking. "Wow," she thinks, but
feels compelled to keep going.
She goes to the fourth floor and sign reads: Floor 4 -
These men have jobs, love the Lord, love kids, are drop-dead good looking and
help with the housework. "Oh, mercy me!" she exclaims, "I can hardly stand it!"
Still, she goes to the fifth floor and sign reads: Floor 5
- These men have jobs, love the Lord, lovee kids, are drop-dead gorgeous, help
with the housework, and have a strong romantic streak.
She is so tempted to stay, but she goes to the sixth
floor. The sign reads: Floor 6 - You are visitor
6,363,012 to this floor. There are no men on this floor. This floor exists
solely as proof that women are impossible to please. Thank you for shopping at
the Husband Store. Watch your step as you exit the building, and have a nice
day!"
FROM DOM: HAHA! Good
one.
11.
SELF-DEFENSE
From a
relative--
"Did you know???? You no longer need to keep your
.45 sitting out on the coffee table... a can of wasp spray will do! Never would
have thought it!!! I have a friend who is a receptionist in a church in a high
risk area who was concerned about someone coming into the office on Monday to
rob them when they were counting the collection. She asked the local police
department about using pepper spray and they recommended to her that she get a
can of wasp spray instead. The wasp spray, they told her, can shoot up to twenty
feet away and is a lot more accurate, while with the pepper spray they have to
get too close to you and could overpower you. The wasp spray temporarily blinds
an attacker until they get to the hospital for an antidote. She keeps a can on
her desk in the office and it doesn't attract attention from people like a can
of pepper spray would. She also keeps one nearby at home for home protection.
You could also keep it in your car and it's perfectly legal. Thought this was
interesting and might be of use."
12. MAGNESIUM FOR
FIBRO
From a reader--
"About the reader talking about magnesium i have been taking
that for about a year and a half. I upped it to 2 tablets now(250 mg each) and i
think and is working. I also read a great book about Fibro and it said
that us fibromites need to take magnesium to help our nervous system.
The
book is called Food that helps win the battle against fibromyalgia : ease
everyday pain and fight fatigue By Deirdre Rawlings - it is a 2008 book and it
was quite good and it has a lot of recipes."
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.
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.
