DOM'S FMS/CFIDS
NEWSLETTER
May 14,
2009
A Christian-based
newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune
Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their
families.
29 TOPICS IN BLUE. READERS'
COMMENTS IN BLACK. MY COMMENTS IN TEAL.
DON'T MISS RED TOPICS!
1. READERS
WRITE
"I love your newsletters and you
help me so much."
"I am so glad I found your website www.fms-help.com. I am finding out so much information. My
doctor is a great doctor, but he just doesn't know anything
about fibromyalgia."
"I just want to tell you how much your
newsletter and other information over the years
have helped me."
"Your group helps me not feel so
abandoned."
"I cannot thank you enough for
everything you do and provide for all of us with this insidious
illness."
"My daughter is 23 and
disagnosed with FMS. I love your website."
"Thank you for your daily help to others and
the difference you make in our lives."
2.
ADDERALL FOR FMS
Reader 1--
"I used adderall and I would never use it
again. It did help the first time I took it because it gave me energy and I
didn?t have much fatigue; I actually felt normal for the first time in a long
time. But, I would never take it again. I hardly slept for three days, it gave
me horrible insomnia and when I did sleep I felt even more unrested than
normally. I think it was still affecting me days after taking it. I also crashed
after taking it and was even more fatigued than initially taking it. It gives
you this high, depending on how much you take and how bad your fatigue is, then
your body crashes. The crash was so bad, I decided that the side effects
outweighed the benefits. When you
take it you feel like doing more and you do, but after activity and all the
adrenaline it sends through the body, you pay for it the next day, or for me,
the next few days. This is just my experience but I would not recommend
this drug to somebody with sleeping problems, anxiety, or extreme fatigue, as it
only worsens the symptoms in the long run."
Reader 2 (in response to Reader
1)--
"There are so many people out there who think
they have FMS or CFS because some doctor labeled them with what they consider a
"waste basket" disorder anyway. This person could have been given too high a
dose. I know a doc who always starts her patients with the lowest dosage
possible and then increases it gradually until they get the desired results. I
take a very high dosage because I am totally resistant to medications and
require probably 10 times more than someone else who is being treated for the
same thing I have. It definitely is am individual thing. I would not ever
suggest taking it at any time other than the morning if you suffer from sleep
disorders as we do. I made the mistake of taking a second Adderall last evening
at 7 PM because I couldn't hold my head up or keep my eyes open but I knew as
soon as I did it that I made a big mistake. I was up until 4 AM this morning.
Duh! I didn't look at the clock when I took the second dose yesterday and
honestly thought it was around 4 or 5 but once I took it I saw that it was 7 PM
and went Uh Oh. I very rarely ever take a second Adderall. I just take one in
the morning every single day and it helps me tremendously. It is worth trying
but I would start with a very low dose."
3.
LYRICA
"I don't understand why people are so
insulted by the Lyrica ad. As I understand it, she's not saying that we're lazy.
I think she's just happy that the Lyrica gives her enough relief and energy to
be able to participate as much as she would like to. My question
today is about the weight gain. I've been taking it for a year and 4
months. I started gaining weight within the first 4 months. I've read that once
stopping the Lyrica the weight starts coming off on its own. So far I've cut it
down to 150 mg / day and I just keep expanding and putting on fat although I'm
keeping the weight gain to about 11 lbs. I don't want to have to stop taking it
because it does help me, but I can't stand the extra bulk. I'd be happy to hear
from other women who have gained and to find out if anyone lost all the weight
back." - Maris maris.mohr@gmail.com
4.
DOXYLAMINE SUCCINATE
From a reader--
"I've been trying to come off Zopiclone
{similar to Ambien in the US}. I've had insomnia for 20 years. About 10
yrs ago I noticed that I had a strange ringing in my ears {Tinnitus} when I
went to bed, it's continued for all those years, so I use ear plugs to try and
blot out the disturbing ringing. I also found out to my distress that the
rebound insomnia, on coming off those drugs is horrific, so few, can
actually wean themselves off them because of this. Lying awake relentlessly
night after night is a dreadful malady, and so, many folk return to taking them.
I decided to stop taking Zopimed {Zopiclone} as I felt that it was causing a
number of unpleasant side-effects, and made my insomnia worse. I've been off it
for over a month and have battled, but have found a much better substitute.
Doxylamine Succinate, I cant believe that I've finally after all these years
managed to stop taking the drugs, its a miracle. Two weeks ago I wrote to you
from Cape Town where I spent a wonderful week with my dear Parents, whilst
there, my Dad offered me half a Zopimed, [I was still craving it} and it worked
quickly but I woke up feeling like lead. The following night was the worst in
20yrs, I almost felt suicidal during the night, as I did'nt take a thing. That
day I went to a chemist in tears and asked him what I could do, he could see
I was in a bad way, and recommended Doxylamine, its 2 weeks ago and I
feel like a new person. Perhaps this could work for others who have battled with
taking sleep-meds. Do you know how long one can realistically take
Doxylamine for, as it says not to exceed 2 weeks on the drug? I also tried
Melantonin which helps speed up sleep but leaves you wide awake from 2.30 am
onwards and gives you the most frightening nightmares. I have a cupboard full of
stuff that has'nt worked, but am so relieved to have finally found something
non-addictive and hopefully harmless."
5. BICYCLE
ERGONOMETRY & DISABILITY
From a reader--
"My daughter had the bicycle ergonometry done
while she was fairly functional. One of the Fibro and Fatigue Centers arranged for it, and the person
who did the testing understood that it would be hard for her to complete the
test and worked with her to get an accurate test. The test score put her in the
highest stage of disability. I highly recommend that anyone who is
looking at trying to get disability payments consider this test. Saying
that, I realize that my daughter received disability status without the test (I
had documented monthly symptoms and tests and meds for several years before
applying), it costs upwards of $2000 and most insurances won?t cover it, and
that SS disability applications are backlogged up to 3 years (last I
read)."
6.
MEDICINAL MARIJUANA
From a reader--
"I believe marijuana is less dangerous than
many opiates and can probably be grown to specific strengths and without
impurities if legal. Otherwise, you are at the hands of someone who is probably
not controlling the pesticide levels and strengths. I think it must do a very
good job of controlling pain and making a patient feel relaxed at the same time.
My other daughter, who had chronic pain, said it was the only thing that truly
relieved her pain. However she died of an addiction to methamphetamine, which
she took along with her legal pain meds. If she had stayed with marijuana and it
had been legal, she may not have been a productive citizen, but perhaps she
would not have tried every drug she could get her hands on."
FROM DOM: I am not for the legalization of marijuana except
for medicinal purposes. And I wonder if marijuana would help everyone with
chronic pain, or just some. I have not heard of any drug that works the
same for every person.
7. WHOOPING COUGH
& FMS/CFIDS?
"Have any other fibromyalgia patients ever had
whooping cough? When I was 3 to 4 months old, I contracted whooping cough
and almost died. I am beginning to think my illness stems from this
disease. One may never know what brought on my CFS/Fibro, but it could be
a possibility that such a hard case of whooping cough caused it to appear later
in life." - Sharalene Sjbear67@aol.com
FROM DOM:
Whooping cough is caused by a bacterial infection. It is possible that the
infection compromised the immune system to make a person more susceptible later
to viral illness, which is what I think FMS/CFIDS
is.
8. FLU PREVENTED BY
VITAMIN D?
Got this fascinating
article from a reader - http://www.medicalnewstoday.com/articles/51913.php! It is so interesting about why this doctor
thinks there are more colds and flu during winter than summer. And when
people started working indoors rather than outdoors. Here's a short quote: "Studies have found the influenza virus is present in the
population year-around; why is it a wintertime illness? Even the common cold got
its name because it is common in cold weather and rare in the summer. Vitamin D
blood levels are at their highest in the summer but reach their lowest levels
during the flu and cold season. Could such a simple explanation explain these
mysteries?"
9. DO CELL PHONES
CAUSE BRAIN TUMORS?
http://sixtyminutes.ninemsn.com.au/article.aspx?id=797215 - See video from Australia. If you own a cell
phone, you should see this! There's been a dramatic increase in brain
tumors and brain cancer since the advent of cell phones. I have a dear
friend who lost her husband to a brain tumor at age 49, and they fully
believed it was from 20 years of cell phone use at his job supervising a
road crew outdoors. The doctor in this video owns a cell phone, but
advises using the speakerphone or hands-free feature to limit contact with your
head.
10. FREEZING &
ITCHING
From a reader--
"My mom has fibro and itches insanely all the
time, and freezes to death. At least seven doctors have made light of
this. She says pitifully; "I don't mean I have a little chill and need a
sweater! My muscles feel like they are frozen- like chicken in a freezer!" It's
agonizing for her. Do you relate or have any advice?"
FROM DOM: I
have had the same symptoms. I am NOT a doctor, just a patient, but I can
share some things I have heard of, learned, or tried. The deep chilled
feeling may be coming from the hypothalamus gland in the brain that regulates
temperature and many other body functions. The itching may be from a liver
malfunction. In fact, in Chinese medicine, symptoms of FMS/CFIDS are
considered liver problems. Before I was managed better for my
FMS/CFIDS, I would feel like it was 30 degrees in the house when it was 75
degrees. (I live in Florida!) My eyes could simply not believe the
thermometer hanging on the wall above my bed. I would be
wearing thermal underwear and cover up with 5 blankets and my teeth would still
be chattering! My body just wasn't getting the correct signal about
temperature. That's a hypothalamus problem, I believe. About muscle
stiffness and gelling, been there too, but don't have that anymore - magnesium
has helped, as well as a bunch of other stuff listed at www.fms-help.com/what.htm. My
FMS began in June 1982 www.fms-help.com/fibro.htm, and my
CFIDS began around Jan. 1987 www.fms-help.com/fatigue.htm, so
I've had decades of misery. I didn't start finding relief until
1996. Sadly, most doctors don't understand FMS/CFIDS www.fms-help.com/doctors.htm.
I am fortunate to have a very intelligent and compassionate doctor of
internal medicine who manages my meds and listens to everything I have
to say. Here are some suggestions which may or may not work for
everyone. For the unexplained all-over itching, I use Atarax (prescription
antihistamine). To get my immune system working correctly, I use an immune
shake (daily since 2001). A complete list of everything I use (meds,
supplements, lifestyle helps) is at www.fms-help.com/what.htm. If something on my list rings a bell with you and you
have questions, I can send more info. It's
awful to not be taken seriously by doctors! This all boils down to
something I discovered years ago - the only people
who understand FMS/CFIDS are those of us who have it.
11.
RESPONSE TO A READER'S SUFFERING
"Dom - From a
Reader who has thought of suicide...I have been there. I have been in
TEARS and have cried so much there were NO MORE TEARS. I have begged God
to remove this nightmare. I HATED the pain..never ending pain and
fatigue...I have had illness over illness diagnosed - (nine plus) and
the symptoms fill several type-written pages...the misery. I cannot
imagine Job being worse off, but I guess he WAS. HOW did he LIVE through
IT? At least HIS came to an END. I begged God to remove this from
me. I hated it..I was ALONE in it. I could SMELL death...the sweet
scent of death..enticing me to take my life....And very recently, I was
on the phone with my dear mother; she prayed with me - NOT for removal of this
BUNCH of thorns....but she prayed for STRENGTH to get through
it. I have NEVER experienced
this.....but I felt a WAVE of His presence over me...and I
received STRENGTH - but only for that moment. I have lost it
as far as an never-ending 'cure'...BUT God
continued by showing me truths I had seen before but was BLINDED and was not
seeing it in my spirit. He showed me -
that I cannot HATE something HE ALLOWS! And WHY did he
allow this HELL I am going through????? EVERY part of my body is in
pain....pain I cannot describe. To walk hurts, to touch my face - to touch
my head....to breathe....my lungs are in pain....I am a mess! HOW CAN I NOT HATE THIS? Because
He is allowing it...and now I can see why. I KNEW before that I can learn
from this...and I HAVE. BUT NOW I can see even better. And that is
how God works. WE see a little at a time...as he sees us
handling the Truth better, he gives us MORE truth....and more and more... A
little at a time. I can
see how my TRUE CHARACTER has been showing up through this TRIAL.
And what are we instructed to do? CONSIDER IT PURE JOY!!! THESE TRIALS WE
ARE HAVING! Well, I did NOT want to hear
THAT! And I did not ant to hear it from ANYONE WHO WAS NOT IN MY
SHOES!!! FIRST hurt at horriblly as I DO - then tell me
THAT!
Well, it was GOD
telling me now....and HE came down and suffered everything I would suffer - and
I cannot fathom him suffering EACH OF OUR PAIN....ALL OF US INDIVIDUALLY - HE
SUFFERED FOR US....YES...HE DID....SO HE CAN TELL ME TO
CONSIDER IT JOY...WHEN HE SPEAKS THROUGH HIS
DISCIPLES. Oh the truths shown to
me. When my TRUE self comes through at my WORST pain...I DO NOT
LIKE IT. I am working on that ugly person that comes
out... I am NOT ready for His return.
NO NO NO I am NOT ready for him to take me!!
I begged God to take me and I was NOT READY! I
am NOT ready to stand before him, and I am glad he did NOT take me. As bad as this is,
I cannot imagine HELL BEING WORSE! Imagine never
having an end to this. I need to use these hell
moments and days and weeks - (I just got up from over a month in bed....last
week I started getting up more and more - except for different moments, I spent
my past month or more In bed.) OH READER - feel
free to call me when you are going through this HELL. Any time or any
day...or night....please. I WISH I HAD SOMEONE TO
CALL IN THE MIDDLE OF THE NIGHT. MY MOTHER IS TOO ILL TO BOTHER IN THE
MIDDLE OF THE NIGHT, OR SHE WOULD BE THE ONE I CALLED UPON.
BUT I AM HERE. 'PLEASE, DOM, FEEL FREE TO GIVE HER
MY PERSONAL EMAIL AND PHONE NUMBER....I WELCOME HER CALL OR LPOST.
PLEASE KNOW YOU ARE NOT ALONE...JESUS SUFFERED
EVERYTHING YOU ARE FEELING! The smell of Death
still comes to me. It has returned this past week. I cannot explain
it. And I also need to say here.
That I did nearly die....and when I was dying...I
realized I really DID NOT WANT THAT. I was
not ready to die. When we are
ready, we are not in a rush. When we are ready, we are willing to
wait for the Lord to take us at His time. God has
shown me more and more and more....and only God can show this Reader. I
cannot show her...BUT I can share if she desires.
OR I CAN SIMPLY
LISTEN AND BE ABLE TO SAY 'I KNOW WHAT YOU ARE GOING
THROUGH.'
THE SUFFERING IS SO BAD I CANNOT IMAGINE ANYTHING BEING WORSE.
I WATCHED MY UNCLE AND FATHER DIE FROM CANCER.....AND
THEIR LIVES WERE NOT AS PAINFUL AS MINE. I ONLY KNOW THAT BECAUSE THEY DID
RECEIVE RELIEF....THEY WERE ABLE TO SPEAK. IN MY
PAIN I CAN ONLY GROAN....SPEECH IS ALMOST IMPOSSIBLE. IN MY PAIN I CAN ONLY DESIRE DEATH. UNTIL RECENTLY GOD SHOWS ME
DEATH IS NOT THE ANSWER. LIFE IS THE
ANSWER. AND I SAW A SPECIAL AND
WONDERFUL TRUTH: WE ARE SOLIDERS.
WHEN A SOLDIER ABANDONS HIS POST IT IS THE WORST THING HE CAN DO.
IT IS THE BIGGEST DISHONER HE CAN GIVE HIS POST. WHEN WE TAKE OUR LIVES - WHEN WE COMMIT AN ACT OF SUICIDE, WE
HAVE ABANDONED THE HUMAN POST. AND WE HAVE NO RIGHT TO DO
SO. THIS IS AN HONOR TO HAVE THIS
BODY. GOD GVE IT TO US TO USE FOR HIS SERVICE.
HOW ARE WE DOING THAT WHEN WE ARE ONLY THINKING OF
OURSELVES? I WOULD HAVE BEEN ANGRY TO HEAR THAT I
WAS BEING SELFISH IF A HUMAN HAD SHOWN ME THAT TRUTH. BUT GOD SHOWED
ME. I HAVE NO RIGHT TO TAKE MY LIFE.
It is amazing to see how Satan uses the same old TRICK on each of
us....it is a carbon copy! He isn't even original! And he gets the
same reaction from each of us - THAT is amazing....he might not be able to read
our minds and have the powers of God - but being one of God's finest, Satan has
the ability and the DESIRE to get to know us so well that he can use the same
trick time and again and GET BY WITH IT. This only shows how much we
need to dig into God's Word and spend that precious TIME with HIM to be prepared
for these attacks....JOB was ready - oh how I need to be more like Job!
Yet when someone who does NOT suffer points to JOB for me to read and for me to
use as a source of information, it is the ONE piece of advice that will anger me
the most! It is easy to do so when the person has o idea of what I am
going through....YET if someone like YOU or this Reader were to do so, it has an
entirely different effect on me.
PLEASE ACCEPT MY
APOLOGIES FOR TYPOS. MY HANDS ARE PAINFUL AND CLUMSY AND TYPOS ARE A
NORM....TO EVEN USE SPELL CHECK IS MORE THAN I WISH TO BOTHER WITH. DOM,
PLEASE SHARE THIS WITH THAT READER...EVEN SHOW THIS IN YOUR NEWSLETTER IN
PORTIONS (IT IS RATHER LONG, I KNOW) - Roseanne rschoof1@cox.net"
FROM DOM: Wow! The Lord has shown Roseanne some
POWERFUL TRUTHS! I too have felt that "sweet scent of death enticing me to
take my life" when things were as low as they could go in my life.
Maybe we all have felt this temptation at terrible times in our
lives when pain and suffering (physical or emotional) is unbearable and
seemingly unending. Roseanne is afflicted with a multitude of severe
illnesses, FMS/CFIDS being just one of them. She is a gem! I have
some additional thoughts about dealing with suicidal feelings at
www.fms-help.com/suicide.htm and www.fms-help.com/amazing.htm. We know that Satan is behind every pain and every sorrow,
but in the book of Job, it was God who pointed out Job to Satan.
THERE IS A
REASON FOR SUFFERING which we may not know now, but one day we will. My
husband and I were watching the Discovery Health Channel last night about a
little girl born with her legs fused together. During the time of filming,
she was 8 years old. They call her the "mermaid girl." What spirit
she has, despite 2 kidney transplants and a multitude of problems every
day. Sometimes we think we are the only ones with severe afflictions, but
we are in good company as sufferers. We need to keep eachother
encouraged to live out our lives for as long as we are meant to be
here! A pastor I was confiding in years ago told me that I had a
"ministry of suffering"....certainly not my choice of ministry!
Here's
another great article I got from Moody Adams
tonight:
"Appearances
sure can be deceiving. There are many people who appear frail and poor, but they
actually possess the most priceless treasure?Christ is inside their
bodies. In east Texas an old man called
?the man with half a head,? told me why he felt sorry for other people. ?Sure,
cancer has eaten up half my head (one eye, a cheekbone, half his jaw, and a
large part of his brains were gone),? he said, ?but I?ve got Jesus in my heart.
Folks come out here from town and look at me with pity, and all the while I am
pitying them because they don?t have Jesus. Soon I am going to get me a new
head, but until then, Jesus is in my heart, and I?m so happy I can hardly stand
it.? When I left his little shotgun house and drove away on that dusty Texas
road, all doubt was forever gone about the joy God?s presence could bring, even
to a dying man with half of a head."
FROM DOM: Those of us who have been saved (experienced
the "new birth") www.fms-help.com/salvation.htm
have a LOT to look forward to! Each day that goes by, we are one day
closer to being with Jesus in our Heavenly Home. I am learning that it's
important to live our life here on earth for as long as God wants us
to. We have PURPOSE, even though we may not know what it is
- and we get discouraged at times (orr often!) My pastor said tonight
that to have FAITH to continue in the Christian journey, we need to know God's
WORD, because that's what our faith is based on! I really enjoy
unwinding at night before I go to sleep with my King James Version New Testament
(large print) - it also has the book of Psalms. I feel soooo much closer
to God, comforted from life's stresses, corrected when I have been wrong in my
attitudes, and encouraged in my spirit when I take time to do
this....."Though our outward man perish, yet the inward man is
renewed day by day. For our light affliction, which is but for a moment,
worketh for us a far more exceeding and eternal weight of glory." (2
Corinthians 4:16,17)
12.
MARRIAGE
From a reader--
"My husband and I are together all the time and
get fussy at times. I want to work on your suggestions for the woman www.fms-help.com/marriage.htm. I have a wonderful
husband and don't want to ruin him. He's not perfect but he is gold after
reading your article."
FROM DOM:
Marriage stress is awful and we fibromites could sure use less of it
in our homes! Finding ways to make a relationship work is so
important, but also complicated when you throw chronic illness into the
mix. I have some helps for relationships in the yellow box on my homepage
at www.fms-help.com.
13. FIBRO ACTION IN
THE U.K.
From a reader--
www.fibroaction.org/ -
"Despite the
high numbers of sufferers (between 1.2 and 2.7 million people in the UK alone),
awareness of the condition, and the knowledge and treatments available for it,
is very low, even amongst medical professionals, and many patients are left to
suffer alone."
FROM DOM: I
would say this is still very true in the U.S. as well, although many drugs are
now being pushed on TV for fibro, without much success for patients, at least
according to my mailbag. (I refer to Lyrica, Cymbalta, Savella,
etc. Search my newsletter archives at www.fms-help.com/newsletters.htm.)
14. COLICKY
BABY
From a reader--
"My new grandson has been having colic. We gave
him one probiotic for 3 days and the colic stopped but as we kept giving him one
a day it ended up being too much for him, so we went to 1/2 and it seems to be
working well. It is a gel like substance, so it
works well squeezing out this much and the mom can just pop the rest of the
probiotic in her mouth, so none is wasted. We also put him on a goat's
milk formula from the askdrsears.com website and he handles that great.
Mom's milk is just not rich enough for him, so he always wants to eat.
Right now he is supplementing but it can be used
alone once the mom stops breastfeeding. Dr.
Sears gives the full details on his website. I hope this helps these
babies that have this miserable thing called colic. It's really just a
lack of good bacteria. UPDATE:
We gave the baby a half of a probiotic for two days in a row and then today
he was uncomforable again, so we will reduce it again or give him a half every
other day. It's hard to know how much the little fella needs. He only
weighs 8 lbs, so it's trial and error until we find a balance and find what
amount is right for him and then adjust as he matures. Too much good
bacteria has the same symptoms as too little according to Ann Louise Gittleman
who wrote the book Beyond Probiotics. Our 3 yr old takes one a day with no
problems at all. I want mom's to know it's not a piece of cake when the
babies are so little. Some trial and error is necessary."
FROM DOM: I can't think of many things more stressful than
having a colicky baby. Years ago my best friend had a severely colicky
baby who cried 23 out of 24 hours. She got virtually no sleep for 6-8
months. She was so sleep deprived she could fall asleep standing
up. But whenever she took the baby to the doctor, the baby slept
peacefully! I stayed with my friend for a week to help her out, and the
situation was extremely stressful. Glad to see a solution for colic
from this reader. (BTW, the baby I helped care for is now in
college!)
15.
NALTREXONE
From a reader--
16. FIBRO
AWARENESS
Reader 1--
"All I can say is "AMEN" sister. You have
really said it eloquently yet powerfully too. Thank you from a fellow
sufferer. I live in Canada but my heart is with all the people who
have to suffer needlessly. God Bless you and all of our fellow
FMS/CFIDS families."
Reader 2--
"You can't improve
the wording. That is as plain spoken as it can be. The sad thing it
there has not been much change since 2006 of how people don't believe we have a
true illness, that it is all in our heads and "it can't be that bad" or
"your just depressed." I have told the doctor I am not depressed, I am
very sad that I can't do what I want to do (work hard at my job, take care
of my family the way I want to and be involved in the activities I use
to work hard in to improve my community and better other people's lives [I
miss working with children and youth groups]. Enduring the pain weakens my
spirit and at times for an extended period of time may make me
depressed.
I believe
I have had mild fibromyalgia since my hysterectomy in 1998 (insomnia hit me the
day I got home from the hospital and has never improved), also a year of great
trouble in my marriage. I had pain the doctors smirked at until August,
2006 when my mother passed away and the illness knocked me on my feet, I could
hardly function. I literally was laughed at by a nurse over the
phone when I called and said the pain medication the doctor had prescribed did
not work. She pretty much told me nothing could help
me.
I was
diagnosed by a rheumatologist in 2006, but I was told she didn't have time for
me, to have my family doctor follow me. I went through severe pain and
several doctors thinking I was drug seeking (which would be the opposite I would
love to decrease the amount of drugs I have had to make a part of my
life). I finally found a rheumatologist a block from where I work
that is a God send. I have been seeing him a little less than a year and
if I had not had him this year I don't believe I would not be alive
today -- I would have had to end it.
It seems
as if everyday I am faced with some form of negativity in regard to my health
from co-workers, employer, family and friends. I have people ask me if I
could do things faster when I am doing the VERY best I can and doing a good job
of it, just at a slower pace. I am not in my 20s anymore, I am in my 40s
and just not as spry as others.
It is so
silly how people without M.D. behind their name can make judgments about our
health.
I am sorry
I had to vent. I have had about all I can take. I have good weeks
and bad weeks, but it seems as if the grip of it never truly leaves me.
There is a new something everyday. I do not discuss my illness with anyone
hardly but my doctor anymore."
17. TOO MANY
SHOWERS?
18. BRAIN
ABNORMALITIES IN FIBRO PATIENTS
19.
HALLELUJAH (VEGAN) DIET HARMFUL
20. CHRONIC PAIN
SUPPORT GROUP
21. FIBRO &
FATIGUE CENTER
From a reader--
"I, too am affected by Fibromyalgia and Chronic
Fatigue. I even went to a Fibromyalgia and Fatigue Center. [As to whether it
helped her feel better]....For a time I was. My condition was more than
they could handle. I have several doctors that I go to for various things. I
also could not continue to go there and pay out of pocket. My prescriptions were
covered, but not the supplements or office visits. I am not doing as well, but
I'm not as bad off as I was."
22. VIRAL CAUSE OF
FMS
From a reader--
"I participated in the viral research project
that Dr. Daniel Dantini of Ormond Beach led which included high doses of
Valtrex for a several month period and am on a daily maintenance dose of Valtrex
and feel pretty good most of the time. The research has shown that not all
will benefit from this but about 80% do. The viral cause of FM is being
heavily researchded as is the bacterial or enteroviral cause. The
bacterial or enteroviruses need long term doses of minocin ( a form of
tetracycline) and as you may know there is a new NGO that has formed
to study the enteroviruses - including types, treatment protocols, etc. I
believe it is www.enteroviruses.org but am not sure of the
exact website...These have been implicated in the rheumatic disorders as
well."
23. RIFE
MACHINE
From a reader--
"I am somewhat skeptical about this treatment and
am very familiar with the type of equipment and rationale behind it as I had a
friend who trained on this and tried to cure her own cancer.
In her case it did not work. Certainly I know everything has a wave length
or magnetic force field so the theory is not totally without scientific backing
- but the treatments are not proven."
24. ALPHA-STIM
MACHINE HELPS WITH SLEEP
From a reader--
"Has anyone shared with you
about a device called an Alpha-Stim? My massage therapist
had me go to a Psychologist here where we live, and ask her about it. This lady
doctor is a Colonel in the U.S. army, and has been right in the trenches with
fellow military friends in Iraq, Afghanistan, and other places. She is a medic,
and has used the Alpha-Stim on those with pain, emotional problems, sleep and so
on, due to the awful things they see and go through.
There are three types of the Alpha-Stim, and
since reading it would be more helpful to you than me trying to explain it, the
following is the web site....... www.alpha-stim.com
This Psychologist let me use a "loaner" for one
month before she would give me a prescription to buy one. She said they
are too costly to do otherwise, and she won't do that to people. The first
time I used it for one hour, and that night I slept 7 "good" hours for the first
time in I can't remember when. Only getting up once to the
bathroom.
To make a long story short, it helped me so much
with the insomnia, fatigue and pain that my husband and I decided to buy
one. I have used it over a year now, and I am now able to do things I
haven't done in years. I'm NOT saying it takes away ALL pain, nor does it
give me 7 hours of sleep every night. There are still the stress factors
that will cause me to have a fibro-flare, but they just don't last as long, and
are not as severe.
This lady doctor would be the first to tell you
that this won't work for everybody. But, in my case, I wouldn't do without
it, now. I even gave it a "test" not long ago, doing without using
it for over a week. I could feel myself slipping back into my old fibro
patterns. So, I went back on it, and after about a week of using it each
day, I am now doing much better again.
We just went through the death of my husband's
father, and are now dealing with his 87 year old mother who is grieving over her
husband's death (they had been married 68 years) and moving furniture,
etc. Having to stay on the go much more often, and doing things I'm
not used to doing, but with the Alpha-Stim, I have been able to participate in
"necessary" things for 4-5 straight days with hardly any problems. (I do
know my limitations and I still prioritize) Where before, I would have been down
in bed after the second day of having to "go and do." Especially with
something this stressful and emotional.
We bought the SCS version of the Alpha-Stim.
I was concerned about trying the one that uses probes because I also have
Multiple Chemical Sensitivities, and I felt I might not be able to use the
patches to hold the probes on my skin. I can't use pain patches, nor use
band-aids, etc. so I was just apprehensive.
You can read about it on line, but I use mine
each day anywhere from 20 minutes to an hour. Just depending on how much
time I have that day. Actually, you can wear it while doing your work, or
whatever. It attaches to your ears, and then you just drop the body part
of it in a pocket if you have something you want to do. I prefer using it when I
am having my morning devotional time - it is such a peaceful time, so I feel it
might be more effective by using it during a quiet time.
I am to the point where I don't have to use it
every day. We went on a trip on a plane for a few days, and because I
didn't want to try to explain what it is, or maybe have it taken from me, I just
decided to trust the Lord to help me do without it. And, I had no problems
at all. I just resumed using it when I got back home. I could have
taken it - this doctor gave me a signed paper saying I needed it as I would my
medications, but I still didn't want to take the chance. (by the way, I do
still use my regular night time meds even though I use the
Alpha-Stim)
Here in the U.S. you have to have a prescription
in order to purchase the Alpha-Stim. I think it says out of the U.S. you
don't need a prescription. But, if anyone is interested, I could ask my
doctor, and she might be able to give me the name of someone in that particular
area who knows about it, and would give them a prescription.
Dominie, please know that this doctor didn't ask
me to tell others about the Alpha-Stim. I am just so sold on it because of
how much it has helped me. As I said, I still have my days and times,
though. They are just not as severe, nor do they last as
long."
FROM DOM: I
have reported on the Alpha-Stim machine in 3 past newsletters www.fms-help.com/newsletters.htm. This is something I would love to try! Below is the
information I had in a 2005 newsletter about
Alpha-Stim:
ELECTROTHERAPY
These Brain
Waves May Tame Fibromyalgia
This technique is gaining wide
acceptance at chronic pain treatment centers," says Lichtbroun, assistant
professor at Robert Wood Johnson Medical School, in East Brunswick, N.J. "At
first I looked at this device very skeptically -- and even now I am beginning to
see some patients who had a marked response at the beginning are gradually
beginning to deteriorate -- so again I wondered if the machine had lost its
power. But what I've found is that patients eventually lose their incentive to
use the machine, and less frequent use appears to mean a return of symptoms."
The machine Lichtbroun refers to is the
Alpha-Stim CES device made by Electromedical Products International Inc., of
Mineral Wells, Texas. Patients using the device clip electrodes to their
earlobes, which transmit low levels of electricity back and forth, through the
head.
Both groups were told to use the devices
for an hour a day for three weeks.
For therapeutic use, patients are taught
how to use the devices so that "they can undergo the treatment in their own
homes, at a time that is convenient for them," says Lichtbroun. That's a big
advantage over some other approaches, such as massage, because it doesn't
require "special appointments or a trip outside the home," he points out.
The results of the
electrotherapy treatment were "very surprising," says Lichtbroun.
Physicians determine how severe a case
of fibromyalgia is by testing "tender points" -- areas of highly localized pain.
The study participants who had real electrotherapy treatment had a 28%
improvement in tender-point scores and a 27% improvement in the amount of
general pain they felt.
But most surprising, says Lichtbroun,
was that only 5% of the treated patients reported having sleep
disturbances after treatment, compared with 60% who had sleep problems
before beginning electrotherapy treatments.
And 90% of the treated patients reported
that their quality of life had improved as a result of treatment, while 20% of
the patients who were in the fake treatment group said their quality of life had
declined.
These results are almost too good, says
Robert S. Katz, MD."
25. FIBROMYALGIA
CLOTHES
26. CAN FATTY ACIDS
STOP VIRUSES?
27. AVIAN FLU
SCAM
28. ONE
WOMAN'S FIBROMYALGIA STORY
"Imagine having the worse flu you've ever had.
The achiness, stiff joints...now imagine feeling that way nearly all day, most
days you wake up. I have fibromyalgia and lupus. That may mean nothing to you.
If not, that's fine. I pray you never, ever have to know this evil life-stealer.
What hurts me may not affect you at all. What hurts you may not bother me in the
least. I'm writing this to try to allow a few people into what we "fibro-mites"
go through almost daily. Although many of our symptoms are the same, we are all
different. This is my story...
My feet and hands burn immensely nearly
everyday. They feel as if I've placed my palms and the bottoms of my feet in
boiling water. They hurt.. My feet hurt so badly that I have to move them to try
to find relief. We all hurt from time-to-time, I know that. But we each deal
with pain in our own way. Some days I deal with it better than others. Today is
not a good day for me.
People with fibro are very sensitive not only to
pain, but to smells, sounds, touch and I'm finding out now, even taste. Some
days, even the clothes against your skin can make you want to scream. You forget
even simple things at times. That?s what we call ?fibro-fog.? Everything is
different to me now. Someone's perfume at work recently made me so nauseated
that I wanted to throw up. It nearly triggered a migraine and that stinks?no pun
intended. And then at times the sound of one clicking a pen makes me want to
scream because in some weird, crazy way, the sound "hurts" my body. Certain
lights hurt my eyes and they stay dry and brittle. I have to carry eye drops
with me all of the time now. It's not fun. It's not pleasant. It's just my life
from here on out.
Many times I cannot plan things in advance. If I do too
much one day, I pay for it the next. It seems I pay double if I over-do it too
much. Imagine you have "X" amount of energy to spend a day. If we use too much
at one time, it takes away from the "X" you have for tomorrow. It's like you
have to compromise one day to the next just to get up and do simple things. It's
not fair. Life isn't fair. But God has given me this challenge for a
reason.
Why did I write this? I am not even sure. Many times I write to
take my mind off of pain. I'm not asking for sympathy or people feeling sorry
for me or anything of that nature. I just want people to understand that even
though we fibro-mites are smiling and laughing most of the time when you see us,
doesn't mean that we are not being tortured inside by this invisible illness
that is so misunderstood. I would never wish it on anyone.
God has been
good to me over the years?much better than I deserve. I recently decided that I
will praise God no matter what happens in my life. He has given me so many joys
and more happiness than this evil illness will ever take away. I'm trying to
learn to see the good in things, not just whine about how I'm feeling. I know I
will get through this because I am blessed. If not for God, I would be nothing
at all. He loves me despite my flaws, my insecurities, my forgetful ways?.it's
true, abiding love and He will never leave me no matter what. I'm so blessed
that I know Him personally. I know that I would never want to walk in this world
without knowing He is right beside me helping me through whatever storm I face.
Next time you are having a bad day, think of the many people with
chronic illnesses that have to deal with it on a daily, if not hourly, basis. It
helps me to know there are people way worse off than me - it gives me a
different perspective. Soon, I plan to write about fibromyalgia from a
scientific view of this ?syndrome.? This again, was MY story. We are all
different, but share a bond that others may never understand. So to all of my
fellow ?fibro-mites,? hang in there. There are those that can empathize with
your pain and maybe a few others that can understand what we deal with
constantly."
29. DOM'S
UPDATE
I'm doing well,
thanks to the many helps I use to function and get from day to day
www.fms-help.com/what.htm. Staying busy with music teaching,
playing for my church, and home responsibilities. Made a nice scrapbook for my niece who is graduating from
high school next week.
Had a wonderful
Mother's Day with our grandbaby here (on Donnie's side) and also my mother, so
there were 4 generations at our house. The baby is 3 months old and my
mother is 87. We got some great pictures of them together. Something
funny happened that afternoon. It was between the 2 church
services (morning and evening) that I play for, and on Sunday afternoons I
always get into my nightgown and rest for awhile. Well, I was wearing my
nightgown and bathrobe when everyone arrived. They were all nicely
dressed and everyone started taking pictures of this "4 generation" event.
I said to my daughter-in-law, "I'm the only one here in a bathrobe!" She
said, "It's okay. You're the
grandmother!" I
pictured a little old lady who never gets out of her nightclothes, and maybe
even drools a little! Well, I'm only 57... and not quite ready to be
a fossil! The remarkable thing is that my mother (the "GREAT-grandmother")
is 87, fit and spry, with a healthy tan from working in her yard, and wore
a dress that would flatter a woman in her 30's. My mother is
also "happier than the average bear" - probably because she spends so much time
in the Word every day nourishing her soul and her faith. As my
brother once observed, "You're older than
Mom!"
In other news, I went
to the chiropractor today because I threw my neck out from lifting the baby on
Sunday. Sigh. Oh, and one more thing.... about the grass
transplanting project I mentioned in my last newsletter? I got a
severe allergic reaction from the mold in the soil that made me extremely
miserable for several days. Well, so much for life with FMS/CFIDS - we gotta
take special care of these bodies - we are different from other people and
just can't do what others can, although we keep trying for some
reason!
I hope everyone wrote their
letter for Fibromyalgia Awareness Day on May 12. I wrote to about 30 close
friends and family and received just one response! Sigh! See? You
guys are the only people who understand what I'm talking about and going
through. We need eachother. I know many of my readers think I write
this newsletter out of purely altruistic motives (for the past 13 years), but I
can't begin to tell you how much you mean to me - the information you pass
on to me, the emails written in the middle of the night when you can't sleep,
the words of encouragement that pick up my spirits when I feel like giving up -
how can I ever thank you enough?.....except to keep this newsletter going for my
fellow fibromites!!!
'Til next
time,
Dominie
2 Corinthians 1: 4
- "Who comforteth us in all our tribulatioon, 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.
Return
to Dominie's FMS/CFIDS Home Page
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.
