newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction
Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts,
research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
16 TOPICS below. Don't miss the RED
ones. Readers comments in
BLACK. My comments in
1. READERS WRITE
ruining my life."
"You are reaching out to us all, once high
achieving people, now just struggling to get through each
day, and are a dear friend in a life of much suffering and
2. SLEEP STUDIES
"I am a fellow fibromite for 10
years now. For me, no sleep and muscle pain are my two biggest
enemies. I had a sleep study done last month and what they told me is I do
reach REM Sleep but have lots and lots of Alpha intrusions during the
night. Alpha intrusions are our "AWAKE" brain waves. They asked me
if I was having a lot of pain. When I told them I had fibromyalgia (which
I did not tell them before hand) they said they see this a lot with people who
are in chronic pain. All they could offer me were the standard
anti-depressants, benzodiazapenes, or hypnotics which just don't work for
me. They cause many more problems for me than they solve. Just
wanted to let you know my experience with a sleep study."
"I just read your newsletter www.fms-help.com/101810.htm and noticed a
person asking about sleep studies. I had two of them done and they both
showed that I had no sleep apnea or any of those problems, but that I do not get
the deep delta sleep due to constant intrusions of alpha waves that bring you
out of delta sleep and almost but not quite wake you up. The problem is
they have no answers for this problem so when they wanted to do a third study on
me I refused. Until they have something to help with the problem, I am not
going through the anxiety of having the study done as it is so hard to sleep
with all of that stuff attached to you. Most FM patients have this
same problem of delta sleep being interrupted by alpha waves. It
has to do with an overactive sympathetic nervous system and an underactive
parasympathetic nervous system."
"I had a sleep study done but unfortunately, they
mixed up my results with another woman patient that was there
and my doctor had tried to have them correct it but they would not so it turned
out to not be of any use to me. Their recommendation for this lady was to
stop smoking and drinking alcohol and to lose weight. I am underweight and
do not drink nor do I smoke. My doctor said insurance would not pay for a
2nd sleep study so there was nothing further I could do."
"I have had a few sleep studies. The only thing that I
was told was that I did not progress past stage two. Hence I imagine, the
reason I am incredibly tired ALL the time. I was not given any sort of
"remedy" for this. So I am sorry to report to those who were wondering,
again.....the magic bullet.....does not exist. What I
have shared, was the only consistency in the studies."
3. MORE WAYS TO ERADICATE
From a reader--
From a reader--
"Just read the post on TMJ www.fms-help.com/101810.htm and
the accompanying link to treatments. Just want to share that my TMJ cleared up
completely wiith just a few acupuncture sessions. This was about 7 years ago and it has never
5. SHARE & RATE TREATMENTS FOR FMS,
From a reader--
"My Headache Cure: In my
desperation with headaches, I hit on an Internet web site
about oil swishing - an ancient Ayurveda practice.
This involves swishing Sunflower or other recommended oils in
your mouth for 10 to 20 minutes daily & spitting the mixture out &
rinsing the mouth with warm water. My 5-year headaches that were untouched
by any medications have been gone for about a year. I do
this during my morning shower. I have done this oil swishing for
about 2 years now. The incredibly many good side effects
include better dental health, reduced upper
respiratory bacteria and under-the-tongue absorption of omega 3 oils
without the fat ingestion. It does take about six months for some benefit
to be felt and I can't believe how good I feel now and this simple low-cost
treatment has no adverse effects."
7. THE ENCOURAGING
From our plumber--
"Some people make cutting
remarks, but the words of the wise bring healing. ”
(Proverbs 12:18 NLT)
8. THE HUMAN CAMERA (THE
From a reader--
"Once you see this, you will be
blown away. If you have never seen before, you are in for a treat!
Some of us wonder what the best computer is in the world - it's
got to be a brain. THIS
MAN IS KNOWN AS THE 'HUMAN
CAMERA'! See http://video.stumbleupon.com/#p=0k4lsi1dql.
DOM: You have GOT to watch this video clip! It is the MOST
INCREDIBLE THING I'VE EVER SEEN!!!!! IT'S AMAZING HOW GOD HAS DESIGNED
SOME PEOPLE'S BRAINS!!! BTW, 20 years ago, I knew an autistic man at
church. He was about 45, totally blind, rocked back and forth, and said
nothing. Everyone sort of avoided him, except to say hello, not knowing
how to relate. One day our pastor called this man to the front of the
church and asked him to play the piano! We all thought our pastor had gone
crazy!!! Amazingly, this man played about as well as any trained church
pianist. Then the pastor asked those in the congregation if they knew the
DAY of the week they were born. He said if we would call out our birthday,
this man could give the DAY of the week we were born. After about 10 times
of total accuracy (it would take him a few seconds to compute), a lady said,
"Pastor, he is incorrect about mine. I was born on a Tuesday." The
autistic man tried again and slowly answered again in his unique voice, "It was
a Thursday." The lady insisted he was wrong. A few minutes later,
when he was giving the day of the week for someone else, this lady blurted out,
"Pastor!! He is RIGHT! It WAS a Thursday. I was born on
Thanksgiving!!!" This man had an onboard perpetual calendar!!! When
he returned to his seat, our pastor said, "The point of all this is that I want
you to never judge a book by its cover." I have never forgotten this
lesson! "I will praise thee; for I am fearfully and
wonderfully made: marvellous are thy works..." (Psalm 139:14)
9. TREATMENTS FOR XMRV?
From a reader--
"Has anyone been able to DO anything about FMS or ME once they
found out they had the XMRV retrovirus?"
DOM: Many readers have asked this same question. Research is still
in its infancy. However, some are trying anti-virals. See
Phoenix Rising http://aboutmecfs.org/Trt/XMRVTreatment.aspx about possible XMRV
treatments. It is a very inclusive site.
liked your explanation of the book of Job www.fms-help.com/101810.htm. Best, most concise explanation I
have heard. Thanks for sharing this insight!"
Article from www.crosswalk.com--
"For it is better, if God should will it
so, that you suffer for doing what is right rather than for doing what is
1 Peter 3:17,
Suffering. It's not standard daily
devotional fare, because let's face it, usually we want to begin or end our day
being uplifted, or even better, lifting up God, rather than focusing on our
pains and problems.
But there's the rub...
we all have pains and problems. Christian and
non-Christian. Lifelong disciple and baby believer. Red and yellow, black and
white. Everyone, from the moment he or she was born, has struggled, tried,
failed, hurt, sinned, misunderstood, and reacted. Humanity shares a true
brotherhood over suffering, one that we might understand a lot better if
suffering weren't also so relative. By which I mean, one person's
issues may sound simple, easy-to-solve, even petty to another. "That's nothing
compared to what I've had to endure!"
But the fact is, your sorrows and
difficulties are real to you. It's one reason why I'm no fan of when people say
a certain place or time in their lives isn't "the real world," as if the spot
they are currently tucked away at is immune from any degree of difficulty.
Suffering is very real, and there's
certainly no reason any Christian would expect life to be otherwise. We purport
to follow a "Suffering Savior." His stripes have healed us, and wow do we seem
to feel them sometimes, which is as it should be, as we deserved them instead of
Him. If we agree that no person but one - no matter where they lived or how easy
or hard they had it - has escaped sin's corruption, then how much more must we
agree that truly NO person has escaped suffering?
Look at what Peter suggests in today's
verse: you can suffer for doing good, or you can suffer for doing bad. By
extension, some of the problems in your life may be a result of your own
rebellion, while other hurts may naturally result from walking so closely with
Christ that you ache at the injustice and hardship around you, with the
world despising and persecuting you.
In the classic allegory Hinds' Feet
on High Places, Much-Afraid journeys with companions named Sorrow and
Suffering, and these two assist her in her climb up the Injury Precipice, which
is a part of her transformation into "Grace and Glory."
The same is true for you. Your sufferings
have informed you, educated you, helped you along in your journey. You may
despise them, but they are yours. And they will be with you whether you are
doing right, or not. Of course, the nature of them will be quite different.
There may be one way, though, to avoid
suffering. There's a third option, left out here by Peter, but not left out by
John in the Revelation. It's the lukewarm response to life, the do-nothing
approach. This is the approach that cocoons itself off from life and all of its
pain. And make no mistake, "Life is pain, Highness. Anyone who says differently
is selling something," says that famous theologian the Man in Black
in The Princess Bride.
You may not feel anything from inside a
cocoon; in fact, it may be an abundance of pain and suffering that forced you in
there. But remember, no creature that cocoons itself is intended to stay locked
up forever. The point is to be rested, healed, matured, transformed. To become
more beautiful, useful. Even the emerging process itself carries a degree of
struggle, but one that, if the insect did not go through itself, would
leave it too weak to fly.
So be lifted up in your suffering today.
It is a companion.
It is designed to transform you.
It gives you a share in the inheritance of
Christ and the brotherhood of humanity.
And it gives you empathy, which gives you
every excuse for ministry.
Intersecting Faith & Life:
Make it your goal to partake, as much as possible, only
of the brand of suffering that comes from doing what is right according to
11. LACK OF SLEEP CAUSES WEIGHT
DOM: No wonder so many people with FMS/CFIDS struggle with being unable to
lose weight. Our sleep disorder sets us up for failure - not to mention
the side effect of meds is often weight gain.
12. XMRV FOR DUMMIES
From a reader--
DOM: This is an EASY TO UNDERSTAND explanation of the XMRV retrovirus and
13. "WHEN I AWAKE"
this devotional from a reader, written by Joni Eareckson Tada, who is a
quadriplegic - www.joniandfriends.org (used with permission by Joni and Friends International Disability Center)
"And I - in righteousness I will see your face;
when I awake, I will be satisfied with seeing your likeness."
I have to confess. I have often wished that I
could just die. To close my eyes and wake to the sight of my Lord
and the sound of angels has consumed my thinking on numerous
occasions. Especially when I get fatigued or forced to bed with
David, the psalmist, was no stranger to the
desire to die. But his words, unlike those who promote euthanasia,
are guarded. They are carefully crafted to delete all thoughts of
death for the sake of escape: "And I - in righteousness I will see
your face." There is no way I'm going to end my life sinfully just
so I can behold God. Such a thing is contradictory. I must be
righteous in my death as I am in my life.
"I will be
satisfied with seeing your likeness." I have to realize that no
matter how much peace or contentment I feel on this earth, I will
not be satisfied until it is my time to die. Our earthly life in
Christ is meant to be one of discontentment. Such was Paul's
confession when he debated the pros and cons of life. His
conclusion, and that of David's, was to choose life at all costs in
order that Christ and the face of God would be gained:
to me, to live is Christ and to die is gain" (Philippians
Lord, I want to be with You. Now. I confess it. And
I confess my reasons are not always righteous. Too often they are
because life here is hard. Make my desire for heaven conform to the
face of Your will. Whether in person or in faith, let Your face be
my stay, my life's choice.
Taken from Diamonds in the Dust.
Copyright © 1993 by Joni Eareckson Tada. Used by permission.
Zondervan Publishing House, Grand Rapids, Michigan 49530
14. MYOFASCIAL PAIN SYNDROME (MPS), RSDS
& "BROKEN BRAIN"
From a reader--
concentrate long enough to read all of your story www.fms-help.com/fibro.htm.
You describe muscles and nerves feeling inflamed and muscle gelling. My
muscles over my back and whole thoracic area are in constant
spasm. i certainly have all the things you describe that
you had including being unable to reach into a cupboard without
experiencing severe pain for weeks. I have not been able to do this or
pull drawers out to reach into them. my clothes are lying across the top
of drawers. when i try to hang them up , my muscles are so tight my
muscles feel like they are tearing - it causes severe pain and constant
recurring rib dysfunction, where the rib joints get "stuck" and stab into me
causing extreme pain and further musculoskeletal dysfunctions in my
neck, thoracic and lumber spine. I go to a musculoskeletal Dr who
uses very gentle muscle relaxtion techniques to mobilise my
ribs ...his treatments are very helpful , but until I can get my
muscles and fascia to relax, it is recurring. I am so stiff
and sore and my nervous system is on "full throttle". Just
burning all over, and I startle and jump at the slightest noise.
More than an hour in a car i
have to lie back with eye mask and ear plugs on and when I get to destination
....if I go an further than this i am totally exhausted and have to shut myself
in a dark and quiet room for days to recover. My mild traumatic brain
injury caused this, the filtering system in my brain is broken and it cannot
filter out the constant stimulus of roadnoise, visual movement of oncoming
cars, even the white lines on the road and power poles seem to all come at
me and my brain and nervous system is overwhelmed with information which
is very distressing and fatiguing. A normal
brain uses a lot of its energy filtering out background noise and visual
moving stimulus so the brain is not overwhelmed with constant information.
It sound as tho after you worked in a toxic mould building www.fms-help.com/mold.htm, that the
mold has had a neurotoxic effect on your brain, much like a traumatic
brain injury does. Once the
osteopath triggered off all the constant fibro pain, my hypersensitivity to
noise, bright lights and visual moving stimulus became much more
amplified.....now music is just noise i can no longer tolerate any
lengthy or intense conversations, especially multiple conversations overwhelm me
and exhaust me causing me to withdraw and lie down in the quiet and dark.....all
very isolating. I was a Personal Assistant to the
Chief Executive of a large electric company, an athletic and competitive golfer,
dressage rider, gardener, always busy cramming as much as I could into each
day. Most of all I was a healthy, independent, supportive mother and
wife. Now I am none of these things! Like the rest of us full
of dreams, ambitions, with much left to be accomplished and
experienced. this is just so hard on one's self esteem isn't
it. I will never accept this is it for the rest of my life!
I have lost nearly all of my friends, (a woman
who was my best friend for over 25 yrs, was so horrible to me telling me that
she just couldn't stand me anymore! She made me feel weak and
revolting .(i already feel that myself!) I'm so sensitive
to what people say...they don't understand and forget the person I used to
be. It is easy to become an "island". At least then people can't
hurt you anymore. Stress makes the pain and everything so much
worse!! The high frequency firing of my nervous system winds up even
more. Unbearable!! I was once a cool, calm
and collected person, who took things in my stride and could be relied
upon to cope with anything. now I am easily irritated, foggy
brained, jump at the slightest noise, and burst into tears over the
smallest trouble and so easily mentally and physically
exhausted. (I have had to write all of this a little at a time, over
many days). I feel so trapped and fear for the
15. "JUST A
time to time, people tell me, "lighten up, it's just a dog," or, "that's a lot
of money for just a dog." They don't understand the distance traveled, the time
spent, or the costs involved for "just a dog."
my proudest moments have come about with "just a dog." Many hours have passed
and my only company was "just a dog," but I did not once feel slighted.
my saddest moments have been brought about by "just a dog," and in those days of
darkness, the gentle touch of "just a dog" gave me comfort and reason to
overcome the day.
too, think it's "just a dog," then you will probably understand phases like
"just a friend," "just a sunrise," or "just a promise." "Just a dog" brings into
my life the very essence of friendship, trust, and pure unbridled joy. "Just a
dog" brings out the compassion and patience that make me a better person.
of "just a dog" I will rise early, take long walks and look longingly to the
future. So for me and folks like me, it's not "just a dog" but an embodiment of
all the hopes and dreams of the future, the fond memories of the past, and the
pure joy of the moment.
dog" brings out what's good in me and diverts my thoughts away from myself and
the worries of the day.
that someday they can understand that it's not "just a dog" but the thing that
gives me humanity and keeps me from being "just a human."
next time you hear the phrase "just a dog." just smile, because they "just don't
Authored by Richard A. Biby
DOM: I can sure agree with this article. Our two (rather large)
chihuahuas, Buster (13 lbs.) and Cheeto (9 lbs.), give us such wonderful moments
of laughter with their crazy antics and day after day of unconditional love,
forgiveness and understanding. They are such a comfort when life gets
"mean." God surely must have made canines to help us humans. We
need them. I also LOVE cats but am severely (read: "become
bedridden") allergic. In past decades, I have had some of the
sweetest cats and have loved them dearly. Back to dogs... here's a cute
little piece about Jasmine, a "chipin" (chihuahua/minpin) whom I had to give
away after just a few months because I was severely allergic to the oils on her
coat (from the minpin side): www.fms-help.com/Jasmine.htm.
As you can see, she was just a love! I was able to give her to a good home
(one of my music students), and it has been a perfect match for many years
now. Jasmine brings so much laughter and joy to their home and has
been with them through many severe trials of life.
16. EXPOSURE TO MOLD
I'm thinking it's
exposure to Mold that got my symptoms started. I was in a new building and
they were doing construction. Something I breathed in caused me to have a
hacking cough that was so violent I was over the sink for a few minutes. I
can't stay in the apartment for more than ten minutes without it getting me
sick.Since then I've been dizzier than ever and my cough keeps
returning. Plus, I've had weird neurologic symptoms, and my chest is
tight.I went to a mold specialist and he said I had elevated levels of mold
in my blood AND I was tested for allergies and mold is my worst
allergy. So I'm convinced that there is something like asperigillosis or just
some mold in my body causing a lot of this havoc.It's very nerve wracking
as when I stand I don't know if I'm going to collapse I get so weak and
dizzy. It hasn't happened yet, but I feel like it's close. I was actually
able to get some cholestyramine (CSM) from a Lyme Doctor but haven't
been able to use it regularly yet, and wont have access to it till next
friday. Would you recommend going to dr. Shoemaker or should I just take
cholestyramine and see if it helps? ANYWAY, you mentioned 3 things that you
do that helps with fibromyalgia (which is what they think I have) one for
energy, one for nervous system and one for oxygen to the brain. What are you
taking? I may already be taking them, but if not I want to start so that I
stop feeling so terrible."
DOM: My mold story is at www.fms-help.com/mold.htm. A
list of things I use is at www.fms-help.com/what.htm.
all for now!
1: 4 - "[God] 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
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
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