8.
KNOTS IN MUSCLES
From a
reader--
"I have a question for you and your
readers. My perception is that my muscles behave a little differently than most FMS patients. They get so tight and knotted
that they feel like bones. They
pull my neck to one side and pull my right leg up
an inch shorter than my left leg, creating a cascade of other misalignments and
pains. I have a comprehensive
program for coping with my FMS
including a very healthy whole foods diet, nutritional supplements, medications
(Cymbalta, Baclofen, Trazodone), ergonomic adaptations, chiropractic and massage
therapy. I also soak in a hot
whirlpool tub with Epsom salt and essential oils of lavender, chamomile and
eucalyptus, and afterwards, I apply Biofreeze. It takes a very
strong massage therapist to
perform deep tissue
massage on me in order to loosen the muscles
enough for a chiropractic
adjustment to work. I go to an Atlas Orthogonal Chiropractor to avoid any aggressive
adjustments that might cause more pain. I have a massage followed by
chiropractic adjustment weekly.
My leg and neck return to normal
position, and my pain improves for a few days. But the knots always
return. Does anyone else have this problem, and if
so, have they found anything that works???"
[Wow! That
sounds a lot like how I used to be! Magnesium is what helped me the most. I took up to 6 magnesium tablets a
day. It is said that magnesium helps muscles relax and calcium helps
muscles contract. Women are always being told about calcium, but not about the
importance of magnesium for nerves and muscles. If you get loose bowels,
cut back some on the magnesium, since it draws water into the colon--or you can
take it with meals. Each person is different, but it might be worth a try
for awhile.]
9.
PROVIGIL (revisited)
From a
reader--
"Let your readers know that insurance companies
will often cover Provigil if they have a sleep study done and it shows Sleep
Apnea. Then Provigil is a covered use."
10.
COMMENTS ON LETTER FROM COLLEGE FRIEND (revisited)
From a
reader--
"I
did not like that letter. I think it is ridiculous to think
that FM is due to a psychological problem or because I am not
being completely honest with myself. I am in tune with
my emotional/mental/spiritual aspects and I refuse to think that I am being
punished for being an overachiever. FYI - I got FM after a serious
car wreck which caused a lot trauma to my body - physically, but also
mentally and emotionally. I believe some people are genetically
predisposed to FM, which would explain why it can run in
families. I think some people are just born "carriers" and
something in their life occurs to trigger the actual syndrome. A
trigger such as a car wreck or illness or stress. To me, this
explains why not all type A, overachievers get FM and why many people get
in serious car accidents don't necessarily get FM. However, some
do. There's got to be a common thread, of sorts - other than our
personalities. Also, I'm an identical twin. My twin does
not have FM. In addition, she wasn't in a car wreck so
she doesn't have all the damage to her body that I have. I tell my
twin to be careful because if something traumatic ever happened
to her, she might very well get FM too."
11. GOOD & BAD DOCTORS
(revisited)
From a
reader--
"Please tell everyone, to ask their family practice
doctor to make an appointment with an IMMUNE SPECIALIST. These
doctors will run tests and will eliminate what you could have. This is
their speciality. A family practice doctor can not really help. So
it is not a good or bad doctor, it is a doctor that can diagnose you! Find
an immune specialist, and go see them!"
12. MISCONCEPTIONS
ABOUT CFIDS
From a reader (in regard to a
fantastic Australian article, which I hope to put on my site soon - it
will be located at www.fms-help.com/yuppie.htm
shortly!)--
"A great article! I only hope this type
of literature reaches people out there who have either never heard of CFIDS or
harbor misconceptions about the symptoms. Many friends
still think you just need some fresh air, more sleep and less stress for health
to return. For those individuals, we have given up on explaining what
it can be like to be too tired to get dressed or get off of the couch to
eat or take a shower."
13. HYPOTHALAMUS GLAND IN
THE BRAIN
From a
reader--
"This past summer, a woman from England died and the inquest
into her death stated its cause as CFS. They determined that by ruling out
every other possible cause, and [also] because a part of her brain, the brain
stem and spinal cord were inflamed. Dr Teitlebaum, in the lecture I
attended this past Aug, feels that it begins in the hypothalamus. That
there's an overload to the system, similar to plugging too many appliances into
an electrical circuit, it blows the circuit breakers. In the case of cfs,
the hypothalamus is the circuit breaker box. You have to
unplug everything, support all the systems while they heal and gradually bring
them online again."
14. BRA FOR
FIBRO
From a
reader--
"I am having a horrible time trying to
find a bra that I can stand to
wear with my fibromyalgia and cannot seem to
find any help or
information. Any suggestions?"
15. FOLK REMEDIES
Got this link from a
reader who is using apple cider vinegar (ACV)--
16. SUPPORT GROUP IN YOUR
AREA?
Do you know of a CFS, ME, FM or related illness support group
in your area?
The CF-Alliance is compiling a list of local CFS, FM, ME and
related illness support groups from across the globe.
Please send your
support group contact information to:
info@cf-alliance.comOnce completed, the list will
be available to anyone, free of charge.
Thank You for Your
Help,
CF-Alliance
PO Box 9204
Bardonia NY 10954 USA
info@cf-alliance.comwww.cf-alliance.com
17. BIRTH CONTROL
PILLS
From a reader--
"One of the ladies in my support group mentioned that she thinks that the
birth control pills may be something that most of us have in common. Can
you ask you group if they have taken birth control pills and if they have had
any problems, i.e. fibroids in breast, etc.?"
[I used birth control pills during my
20's. They caused me depression and constipation. Felt a lot
better when I got off of them, but my FMS started right after that. I have
heard that taking B-complex while on birth control pills can
help.]
18. SLOW
DOWN
From a
reader--
"We need to slow down.
You are like me. You think you can still burn the candle at both ends
and in the middle. I just do not have the stamina any more to live that
way."
[I've found it's sooo
much easier to stay healthy than to climb back up the cliff once
you've fallen off. I tend to be punishing of myself - working too
hard, etc. Not anymore. I'm finally learning to pace myself
after all these years. My health is just too fragile to put at
risk. I'm doing all I can to not overstress now. This past 14
month battle I just went through with lung ailments from mold www.fms-help.com/mold.htm was a wake
up call that I could get sick and never get well. Just so thankful a
reader told me about Mold Warriors and cholestyramine, because I would have
not known about this protocol otherwise. A lifesaver!
My lungs are fine now - just a lot more sensitized to allergens than they used
to be pre-mold, but the debilitating fatigue is about gone and I can breathe
again without the "elephant on my chest" feeling.]
19. GUAIFENESIN
(revisited)
From a
reader--
"I HAVE EXCITING NEWS FOR ALL FIBRO. THERE IS A BOOK OUT BY
DR. ST. AMAND ===WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT FIBROMYALGIA. ANYWAY HE
SUGGEST TO GET THIS DRUG GUAIFENESIN WHICH IS FOUND IN MUCINEX, I STARTED TAKING
IT 600MG TWICE A DAY AND ALLREADY IT IS WORKING - NO PAIN AT NIGHT ANYMORE..YES
I STILL NEED TO GO THROUGH MY SHOPPING STUFF TO READ LABELS AND GET RID OF
ANYTHING THAT HAS SALICYLATES IN THEM AND ALL PLANT OIL, GEL EXTRACT TO GET RID
OF IT ALSO. YOU ALL NEED TO GET THE BOOK AND START READING IT,I HAVE A LADY FROM
CHURCH WHO HAS BEEN ON FOR 5 YEARS AND HER UNCLE FOR 7 YEARS..NO PAIN,NO PAIN,NO
PAIN DID YOU HEAR ME NO PAIN!!!! I HOPE YOU ALL GOD'S BLESSINGS WITH THE BOOK
AND THE DRUG."
[I mention guai in a number of
places on my site and in my 100 Tips for Coping at www.fms-help.com/tips.htm. It helps some people but not others. I first
heard about guai in 1996 when reading Dr. Devin Starlanyl's book, FIBROMYALGIA
& CHRONIC MYOFASCIAL PAIN SYNDROME: A SURVIVAL MANUAL. At the time of
writing the book, Dr. S. had been on guai for 2-3 years but was not yet free of
pain and was experiencing some pretty gross side effects. For myself, I
had become 95% pain free from using other things, so I decided not to try
guai, even though Dr. Starlanyl seemed convinced that it was the best way to
treat her own FMS. As you all know, I am for anything that relieves
suffering. The guai protocol may be difficult to follow. I
have some pain suggestions at www.fms-help.com/what.htm - look for the red writing toward the end of the
page.]
20.
BLURRED VISION
From a reader--
"I have had a couple strange attacks
recently and wonder if you have come across anyone who has experienced the
same. The first one, I was sitting watching TV and my vision got VERY
blurry and my left eye started with what I call a short circuit. I had
strange waves, circles and all kinds of signs going on, it lasted about 10
minutes and then disappeared. I felt fine afterwards so I wasn't concerned
about it. Then last week it happened again when I was looking for
something in my closet & a really strange feeling that alarmed me. I haven't
contacted my Dr. but probably should. This is probably another thing
connected with fibro which I have had for 15 years but I haven't come across
anyone who has experienced this."
21.
ZICAM
Reader
1:
"You know, there are thousands of lawyers out
there every day just waiting for someone to have an adverse effect from a med
product. Just watch the TV ads day and night. I have used Zicam and
it does work and have not--I repeat not--had any side effects from it.
This was in the news last year about users who lost their smell.
Well, any of us can have an adverse reaction to even an aspirin--I know my
husband had that after a heart attack--taking aspirin as recommended. He
had a horrible rash that took months to clear up. Did we sue the
manufacturer??NO!! I am so tired of the lawyer/sue happy population that
we have in this country. In fact, a doctor that is a regular on Fox News
was talking about Zicam just a few weeks ago. He said nothing negative
about the product and said what makes it work is the Zinc. Zinc is
effective for colds."
Reader
2:
"I HAVE USED THE ZICAM GEL SWABS FOR 2 WINTERS AND HAVE NOT HAD
ANY PROBLEMS WITH THEM. THANK YOU FOR THE INFO ON THE SPRAY, I WILL MOST
CERTAINLY NOT BUY IT."
Reader 3:
"I find it
upsetting that you posting a RETRACTION for Zicam, telling readers to NOT
use it. I have multiple chemical sensitivities and cannot use most
meds. Zicam has helped me greatly. As with anything or anyone, it
can affect some adversely and others not. I wish, instead, you would have
told readers to use at their own risk --- that it has helped some and others
not."
22. MYCOPLASMA THRIVES ON
CHOLESTEROL
Interesting article
sent in by a reader...here's a snippet from
"What
makes these designer diseases so elusive is that they're
genetically
engineered only for DNA replication, transcription and
translation
with no organelle or cell wall. They have lost their genes
for amino acid
and fatty acid synthesis, forcing them to invade and
steal proteins, sugars
and sterols (cholesterol) from healthy
neighboring cells to
survive.
These cholesterol dependent molecular
terrorists immediately take up
residency in the individual's
genetically pre-disposed weaknesses, (the
weak link in the chain of organs
or systems), or the path of least
resistance. Since Mycoplasma has absolute
dependence upon the uptake of
preformed sterols (cholesterol structures),
they have an affinity toward
cell membranes, nerve cells, sex hormone cell
factories, glands and the
gray matter in brain tissue, where cholesterol
sterols are found. Since
cholesterol is a co-factor in glandular hormone
production, the
endocrine balance is drastically altered with cholesterol
being pulled
out of the cell cycle. That is why pathogenic changes are seen
most
often during pregnancy, hormone replacement therapy, steroid therapy,
menstrual cycles and xenoestrogens from pesticides, herbicides, meat and
dairy.
With the disruption of the hormones, comes an
open invitation for the
RNA directed HIV to replicate. The newly formed HIV
RNA makes its way to
the host cell surface where it connects and breaks away
carrying with it
a GP 120 protein envelope that was hijacked from the
previous cell's
surface. It repeats by countering another cell, adheres to
the cell
surface and accesses the interior genetic material of its new host
where
the cascade process is repeated."
[Interesting. My
cholesterol is very high at 273 last year, but has not been retested since I
have been on cholestyramine (CSM) for the past two months for the mold problem
www.fms-help.com/mold.htm.
I feel incredibly better now. CSM absorbs mold, neurotoxins and
cholesterol. See Dr. Shoemaker's site at www.chronicneurotoxins.com. To learn more about mycoplasmas, visit my page at www.fms-help.com/mycoplasma.htm.]
23. RELAXIN
From a reader--
"I was interested to learn if anyone knows of
the hormone Relaxin. I believe it can be taken orally. Anyone have
any experience with this for fibro? Please email sue.cato@verizon.net."
24. MOLD & FIBRO
[revisited from numerous past newsletters - see
www.fms-help.com/mold.htm - also,
you can use the Google search box at the bottom of this page to find all
mentions of MOLD on my site and in newsletters]
From a reader--
"I have had ultrasounds, CT scans, CBC's
and other blood tests including potassium, foic
acid, B12, Vit D,etc.
I've also had several upper GI endoscopies,
colonoscopies and everything in
my body has been scanned, poked and prodded.
I doctor mostly at the
Mayo Clinic in Rochester MN. Have also tried
chiropractors, red-light
laser treatments, Healing Hands, physical
therapy--all in the last 2
years. And it all comes back to mold. When I
read
Shoe's book [MOLD WARRIORS by Dr. Ritchie Shoemaker]
I was up all night underlining and
marking pages. Light
bulb!!!!! I knew I had a
toxic mold problem in my condo since I paid $1,000 to
have
it tested and sent into a lab for analysis in Aug of 2005. I just
thought my fibro was getting worse, never thought it was because of
mold.
Just moving out has helped, somewhat. Will start the
CSM [cholestyramine] tomorrow. Thanks
again! Please pass
the word on the mold/fibro thing again and again. I
think it's a
key."
25. 10 GUIDELINES FROM
GOD
Got this from a friend
(item #2 helped me relax mentally!)--
*Effective immediately, please be aware that there are
changes YOU need to make in YOUR life. These changes need to be completed in
order that I may fulfill My promises to you to grant you peace, joy and
happiness in this life. I apologize for any inconvenience, but after all that I
am doing, this seems very little to ask of you. Please, follow these 10
guidelines--
1. QUIT WORRYING: Life has dealt you a blow
and all you do is sit and worry. Have you forgotten that I am here to take all
your burdens and carry them for you? Or do you just enjoy fretting over every
little thing that comes your way?
2. PUT IT ON THE LIST: Something needs done
or taken care of. Put it on the list. No, not YOUR list. Put it on MY
to-do-list. Let ME be the one to take care of the problem. I can't help you
until you turn it over to Me. And although My to-do-list is long, I am after
all... God. I can take care of anything you put into My hands. In fact, if the
truth were ever really known, I take care of a lot of things for you that you
never even realize.
3. TRUST ME: Once you've given your burdens
to Me, quit trying to take them back. Trust in Me. Have the faith that I will
take care of all your needs, your problems and your trials. Problems with the
kids? Put them on My list. Problem with finances? Put it on My list. Problems
with your emotional roller coaster? For My sake, put it on My list. I want to
help you. All you have to do is ask.
4. LEAVE IT ALONE: Don't wake up one morning
and say, "Well, I'm feeling much stronger now, I think I can handle it from
here." Why do you think you are feeling stronger now? It's simple. You gave Me
your burdens and I'm taking care of them. I also renew your strength and cover
you in my peace. Don't you know that if I give you these problems back, you will
be right back where you started? Leave them with Me and forget about them. Just
let Me do my job.
5. TALK TO ME: I want you to forget a lot of
things. Forget what was making you crazy. Forget the worry and the fretting
because you know I'm in control. But there's one thing I pr ay you never forget.
Please, don't forget to talk to Me - OFTEN! I love YOU! I want to hear your
voice. I want you to include Me in on the things going on in your life. I want
to hear you talk about your friends and family. Prayer is simply you having a
conversation with Me. I want to be your dearest friend.
6. HAVE FAITH: I see a lot of things from up
here that you can't see from where you are. Have faith in Me that I know what
I'm doing. Trust Me; you wouldn't want the view from My eyes. I will continue to
care for you, watch over you, and meet your needs. You only have to trust Me.
Although I have a much bigger task than you, it seems as if you have so much
trouble just doing your simple part. How hard can trust be?
7. SHARE: You were taught to share when you
were only two years old. When did you forget? That rule still applies. Share
with those who are less fortunate than you. Share your joy with those who need
encouragement. Share your laughter with those who haven't heard any in such a
long time. Share your tears with those who have forgotten how to cry. Share your
faith with those who have none.
8. BE PATIENT: I managed to fix it so in just
one lifetime you could have so many diverse experiences. You grow from a child
to an adult, have children, change jobs many times, learn many trades, travel to
so many places, meet thousands of people, and experience so much. How can you be
so impatient then when it takes Me a little longer than you expect to handle
something on My to-do-list? Trust in My timing, for My timing is perfect. Just
because I created the entire universe in only six days, everyone thinks I should
always rush, rush, rush.
9. BE KIND: Be kind to others, for I love
them just as much as I love you. They may not dress like you, or talk like you,
or live the same way you do, but I still love you all. Please try to get along,
for My sake. I created each of you different in some way. It would be too boring
if you were all identical. Please, know I love each of your differences.
10. LOVE YOURSELF: As much as I love you, how
can you not love yourself? You were created by me for one reason only -- to be
loved, and to love in return. I am a God of Love. Love Me. Love your neighbors.
But also love yourself. It makes My heart ache when I see you so angry with
yourself when things go wrong. You are very precious to me. Don't ever
forget......
Well, that's all for now. I'm thankful to be feeling back to normal
again, thanks to the warm and wise advice of my readers and the prayer efforts
of some choir members at my church (thanks, alto section!)
I continue to learn from my readers and love sharing the
info that comes my way, as we continue to look for clues about this mysterious
FMS/CFIDS illness. CSM (see #24 above) has been nothing short of amazing
in helping me recover from my 14 month long battle with the effects of toxic
mold. I can breathe again and feel pretty good, although I have to be
careful now with my lungs (such as not taking walks in damp air, being around
cat dander, pollen, mold, etc.)
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