Dom's FMS/CFIDS Newsletter
March 10, 2011
A Christian-based 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
Topics in this issue - scroll down to read: 1. READERS WRITE "Thank you for your
efforts on this newsletter www.fms-help.com/030311.htm. I continually find things that help me, both
from readers and from your experiences. Wonderful resource!" 2. NECK INJURY &
FMS/CFS From a
reader-- I met God in the
morning All day long the Presence
lingered, Other ships were blown and
battered, Then I thought of other
mornings, So, I think I know the
secret, By Bishop Ralph
Cushman
"I haven't read this whole article yet www.fms-help.com/030311.htm (Topic 25 - Cervical Spinal
Stenosis & Chiari Malformation), but I can say after having a neck injury in
my karate class, I can relate. After the injury and over a period of a year, I
noticed I became winded easily, I barely had the energy to finish my karate
class, i didn't have any strength, my muscles hurt and were easily injured, I
began having more neck pain issues, and more pain in my body. I was first
diagnosed with Chronic Fatigue and then about 3 years of more symptoms, I was
diagnosed with Fibromyalgia. I now have the most constant pain in my neck, and it
always feels as thought I've had a huge weight hanging around it all day. I go
to bed with it this way, and wake up with it a little worse. It's usually the
right side of my neck that is the most painful. I've tried a chiropractor, but I felt as though
I was wasting my money after a while. I'd pay, he would take about 5 minutes to
snap, crackle and pop my neck and back and I was out of there. Only to get a
headache later on, sometimes a very bad one! Thanks to you and your readers and the constant
search for this kind of news. It helps so much."
3. PANITROL
From a male reader--
"As a male with Fibro I
can easily relate to your Topic 16 www.fms-help.com/030311.htm. I am very happy to report that I have finally found
a natural pain med that is giving me the absolute best relief ever bar none. It
does not devour your liver or other vital parts. It is called PANITROL XR from
enzyme labs in West Palm Beach Florida. 1-800-214-8797 wwww.panitrol.com They offer a free trial period and it is worth
going for. I have been on it for close to a year and have even ran out a
couple of times and had a good hold over effect until I got my new supply.
To the man in the article and all other Fibros.......Give it a
try."
FROM DOM: Also, see MEN WITH FIBRO page at
www.fms-help.com/men.htm
4. CANDIDA (YEAST OVERGROWTH) &
FIBRO
From a reader--
"Hoping this might help
in the case of the man you reported having fibromyalgia in your
newsletter. hoping something might help. he had taken 3 rounds of
antibiotics. it's conceivable that he developed a
very high degree of candida in the gut, which can disturb the immune
system. i had that experience before i got fibro, candida
infection, but i also had other triggers, multiple car accidents, long-term
viral infection (CFIDS). he might consider going to an alternative
practitioner to see whether he has candida (there are antibody tests), and then
to tackle that. he might feel better. or better yet, he can just
treat for it at home, and see if it helps. (there are some herbs listed
below to help, and they are not harmful in reasonable amounts. taking Savella
probably will set him up for other health issues down the road, especially if
it's causing sleeplessness, which can REALLY cause health issues. many herbal
teas have natural painkillers, salycilic acid and other natural compounds that
help with pain. rosemary is a good one. lemon balm is another one.
chamomile is also helpful for pain and sleep. i wouldn't overdose on any
of them, but in moderate amounts they are VERY health building! maybe he would
benefit from melatonin. he also could try olive leaf and mint tea. i mix the two
together for taste. great combo for candida. powerful healer. and
also oregano tea. they are antifungals and effective against
candida. so is coconut oil, which can be added to hot cereals or in
cooking. ORGANIC olive leaf-mint and oregano can be found at: www.mountainroseherbs.com they are really very inexpensive. olive leaf also
gives energy, opens up the blood vessels allowing more blood flow, which WE
need. and olive leaf also helps the immune system greatly. i would consider
buying a small quantity of the various teas and experimenting. it's also
very soothing to drink a cup of hot tea. but it's very important,
especially with candida, to not have sugar or honey, and even
to reduce fruit for a while. i would use stevia. it
has no calories and is completely natural."
FROM DOM: Another thing to
try would be probiotics, such as
acidophilus.
5.
FIBROWHEEL
From a
reader--
"Just a comment on
'Fibrowheel', the anonymous author who wrote 'Thoughts on Suffering' in the
Feb. 26 newsletter www.fms-help.com/022611.htm ..... amazing insight and very well
written. I loved what she had to say. Too bad she insists on being
anonymous!"
FROM DOM: The
fibrowheel author www.fms-help.com/fibrowheel.htm is a male with fibro who
has shared some very insightful comments
recently.
6. SCENAR
RESPONSE
From a reader--
"Someone was asking at
www.fms-help.com/030311.htm if
anyone had tried SCENAR. My doctor tried it on me several years ago and it
did nothing for me. Also, my niece went to the doctor with me one day and
she had sprained her ankle. The doctor used the SCENAR on her ankle to
help with the pain. She thought it MIGHT have helped the pain a "little"
.... but during the use of it, she got very nauseated and sick and had to ask
him to stop. I just don't trust what it does to the nervous system ....
especially since my niece is perfectly healthy and she had a bad reaction to
it."
7. THE PUZZLE OF CHRONIC
FATIGUE
From a reader--
http://online.wsj.com/article/SB10001424052748704005404576176823580854478.html?mod=WSJ_latestheadlines - The video link in this
article is excellent!
8. NO SYMPATHY FOR SLEEP
DISORDER
From a reader--
"I am so tired of being tired and yet not being able
to sleep. I want to get up without pain. I am [in my late 30's] with two
children, and they get so mad when I lie down in the afternoon especially if I
happen to doze off. They also cannot understand why I take so much
medication. I thankfully work half day, but I often think if dealing
with my children or working full day would be more taxing on my body. I
simply cannot wait for bedtime. I take 10mg of Zolnoks (generic to
Stilnox) and it does not seem to keep me asleep as long as it used to.
That’s just the tip of the pills. My family of course thinks that
I am a druggie and do not need any of the medication that I take.
I have printed so much information for them, gotten them pamphlets etc.
explaining FMS, but to no avail, the understand they tell me but, but do they
really?"
FROM DOM: See the following: www.fms-help.com/insomnia.htm,
www.fms-help.com/sleep.htm, www.fms-help.com/relationships.htm,
www.fms-help.com/mnif.htm, www.fms-help.com/skeptics.htm,
www.fms-help.com/misunderstanding.htm,
www.fms-help.com/trying.htm, www.fms-help.com/what.htm - and
there are more helps in the light yellow box on the left at www.fms-help.com.
9. AN ILLNESS THAT'S HARD TO LIVE WITH -
OR DEFINE
From a reader--
http://online.wsj.com/article/SB10001424052748704507404576179031979295592.html - Snippet: "In 1990, after
a bout with mononucleosis, I contracted chronic fatigue syndrome. For month
after month, I felt as if I had the worst case of the flu, and I had little
stamina to do even the most basic life activities. I had to leave my work as a
psychology professor for a year and a half. I was lucky to have a strong
support system and an understanding work setting—something many other patients
don't have—but I discovered just how mysterious and frustrating the illness is.
I also realized how easy it is for people to confuse the experience of everyday
tiredness with the incapacitating illness known as CFS."
10. HELP FOR THE IMMUNE
SYSTEM
FROM DOM: Many
readers with CFIDS are battling a host of viruses and immune-related
problems. After much suffering, I found several
helpful approaches to managing my maddeningly dysfunctional immune system:
1. immune
balancing powder - used for 8-1/2 years - developed by Dupont & Conagra
(high-tech, innovative product).
2. immune booster called DNA Immune - since Dec.
2009
3. use of the antiviral Acyclovir for the past 18 months to
prevent a repeat of shingles (awful) and to prevent chronic cold sores
(ugh)
4. use of oxygenating /
alkalizing drops in my drinking water to raise pH - since August 2009.
Seems viruses can't operate as fast in a more alkaline
environment.
5. for health maintenance, I have used Daily Biobasics at times for general
support - there is no finer vitamin / mineral / probiotic/ fiber powder
anywhere on the market than this one.
11. FIBRO CHUCKLES
FROM DOM: Once when I was writing the
newsletter, in my haste I accidentally referred to my site as FMS-hell.com instead of FMS-help.com. When I caught my
spelling error, I just had to laugh!!! It was rather
appropriate!!! Another fibro funny happened many years ago when
internet "chat" first became available. You could see what the other
person was typing. I was writing to a very ill fibromite named
"Dick" and I accidentally called him "Sick." I wrote something to him
like this: "Well, Sick, I sure feel sorry for all you are going
through." When my eye caught the error, I started backspacing
furiously to fix it. I'm sure he was laughing on his end. Oh, how
embarrassing!!
12. CANDIDA (YEAST), ANTIBIOTICS &
MYCOPLASMA INFECTION
From a reader--
"In reply to #16 -
Male with fibromyalgia, and #17 - Dr Lowe [www.fms-help.com/030311.htm], I've read about and talked to a
few people who have FMS come on after taking antibiotics. I
truly believe that my symptoms are strongly associated with candida. Use
of antibiotics can take a susceptible person over the edge and cause candida to
grow out of control. Probiotics should always be be taken at the opposite end of
the day while on antibiotics. I believe my FMS/candida was brought on
by poor diet and digestion caused by pancreas issues as a result of genetically
weak Vitamin D receptors. Also lowered immunity from XMRV. Also poor
functioning methylation cycle with genetically poor functioning vitamin D
receptors. Opportunistic infections chlamydia pneumoniae and mycplasma
pneumoniae. Also, from what I've read,
thyroid hormones can get blocked from the acids and toxins excreted by
Candida. I've been reading an
interesting book. Has a little bit of info regarding FMS - it's called
"Rheumatoid Arthritis and the Infection Connection." It talks allot about
mycoplasma infections as the cause of illness. I have tested positive for
mycoplasma. A couple of
interesting links: http://www.greatplainslaboratory.com/home/eng/fibromyalgia.asp and
http://drcs.ca/blog/fibromyalgia-and-mycoplasma-infection-investigation/."
FROM DOM: Also see my pages:
www.fms-help.com/mycoplasma.htm and www.fms-help.com/fatigue.htm.
13. FISH OIL &
INSOMNIA
From a
reader--
"Re:
fish oil and sleep, Topic #2 at www.fms-help.com/030311.htm - Fatty acids have been known for decades to be
soothing and relaxing to the nerves. By far the majority of fish oil
on the market is rancid, or has been processed hours and days after fish was
caught, may be fish from contaminated waters. Also many brands use
solvents in the processing. One good way to tell if the brand is good is the
smell. If there is fishy smell, then the brand is not good. There are two good
brands that have no fish taste at all; Nordic and Carlson. Both made in Norway,
as fresh as possible since the oil is extracted right on the factory ships,
immediately after fish are caught. The color of the oil is light golden
yellow. The oil should be taken in the morning. Also, there is a
possibility that the person may need a period of adjustment. Most Americans diet
is short of seafood, thus fish oil. So a period of 2-3 weeks of adjustment may
be needed to adjust to the extra energy which could interfere with sleep ,
especially if the oil is taken later in the day. Japanese and Chinese
diets contain enormous amount of fish oil, so does Norway and Finnish people.
They are not nations of people with sleep problem. We, the FM folks have
the sleep problem regardless. I have taken fish oil for years, and also
have gone long periods of many weeks without, and have not noticed any
difference in sleep pattern. So there are many other factors to be
considered. In my case, a 3-hour hospital test showed I have
autonomic nervous system dysfunction; namely the involuntary
part of nervous system, the part that automatically controls (dictates ) body
functions such as hunger, sleep, and other body functions you don’t consciously
decide on. In regards to the article mentioned, there are other factors to be
considered such as: How much toxin from rancid oil did the test subjects
had to endure, how much seafood did their diet include prior to the test,
etc. The biggest proof of nonsense about fish oil causing sleep
problem is that there are entire nations consuming copious amount of fish, thus
fish oil, with no sleep problems. Jesus and his disciples were mainly
fishermen with big emphasis on fish being large part of their diet. We
Americans are so far removed from such healthy diet that it may become as a
shock to our system when suddenly we take large amounts of the
oil."
14. FOR
DOCTORS WHO DON'T BELIEVE IN FIBROMYALGIA
From a reader--
FROM
DOM: Also, see my page about good and bad docs at www.fms-help.com/doctors.htm.
15. FIBROMYALGIA VALIDATED BY
TESTS
FROM
DOM: Here are more details from the reader in Topic #5 at www.fms-help.com/030311.htm whose
fibromyalgia was validated by blood tests--
"It does feel
really good to be validated by a doctor, finally.
It's like a dark cloud has been lifted, because I know what I'm
suffering is so real, but no one can see or understand
it, except for the experts! You'd never know looking at me
how much I suffer. I really make it look quite
easy! I'm treating at Dr. Michael
Powell's office, a
rheumatologist / researcher who is fascinated by fibromyagia.
They do take medical insurance for payment. They also do
sell supplements and prescribe medications but always make a point to
say that many are widely available at health food stores. I am
taking supplements they recommended.
The test to
discover my fatigue level was called a T3 Reverse, and also a Free T3 and
TSH. It tests for quantity of T3 hormone I believe relative to the
other thyroid hormones, and then they do a math calculation to determine
the conversion of T4 to T3 by the liver and they scale it from 1 to
10. Mine was 9.8, indicating a high degree of fatigue because my
liver is not converting T4 to T3 in adequate amounts.
The
GENETIC MUTATION sometimes seen in fibromyalgia is "MTHFR
DNA MUTATION, Methylenetetrahydrofol Reductase, and I was positive
for TWO COPIES of the A1298C Mutation. My understanding
is that the methylation cycle has to do with detoxing pathways in cells,
and basically, I'm broken, so I'm storing toxins, including in the
brain. I think I'm doing PRETTY GOOD considering!
(Kidding. I actually do have serious memory issues.) I most likely got this genetic
mutation from my father, because I do believe he had fibromyalgia based on
his symptoms. I have followed very closely in my father's footsteps
in symptoms. It's possible his father had it also because he had a
very severe case of "arthritis" that many years ago that I have a vague
recollection of, but that's pure speculation on my part. They also
tested for the following pathogens commonly seen in fibromyalgia, and I
was positive for past high-level antibodies for ALL of them, with active
infection in C. Pneumoniae (walking pneumonia).
The others
are:
Cytomegalo Virus
(a Herpes-family virus.)
Eptein
Barr
Mycoplasma
Pneumoniae
Herpesvirus
6
Also, they found
my Natural Killer Cells were 6% of optimum, NOT very optimum at
all. I was surprised by this. Basically, I'm a
wide-open target for infections, so I do need to be careful and
find ways to build my immune system. My neutrophils (white cells)
were also low.
I have been
strictly forbidden to eat sugar because it wrecks the immune
system and encourages the growth of candida, which I have a
problem with.
c.
pneumoniae (walking pneumonia) http://www.cpnhelp.org/handbookintro is
not insignificant. It's implicated in multiple sclerosis, fibro,
cfids, alzheimers, interstitial cystitis, crohn's, inflammatory bowel
disease, arthritis (which i have had)... WHO KNEW? I'm SO
tired of trying to overcome all these hurdles! I know i have c
pneumoniae, and it can get worse over time, and it can be treated with
long-term antibiotics, which I'm reluctant to do (six months, a
year?) Sometimes you just want to give up!
About the Substance
P test (pain neurotransmitter), I had taken the Sub
P test a couple of years ago and brought it with me to my
first appointment at Dr. Powell's office. They hadn't been testing
for Substance P but were *very* interested in the blood results. I
would imagine that if someone wanted a Substance P test, that Dr. Powell
would be very interested in doing that as well. Insurance would most
likely pay for it. It is through VIPdx Lab, the lab in Nevada that
also tests for XMRV. As I stated in my first post, the normal range
of Substance P in the blood is 20, and mine was 200, TEN times the normal,
which is a HUGE difference.
It's important when considering such
extensive testing that every person is unique. I
certainly am no expert to say whether ALL fibromites will have a
high Sub P result, or a genetic mutation of the methylation cycle, or
other blood test indicators, so I would just keep in mind that test
results "may not be typical." And I'm not even knowledgeable to make
that statement either. I have no idea what the rates
(positive/negative) are regarding these various tests.
Here is the specialist's contact
info:
Dr. Michael
Powell
Fibromyalgia
Treatment & Learning Center
650 University Avenue, Suite
200
Sacramento, CA 95825
Tel: 916-922-8400
Fellowship,
Stanford Division of Immunology & Rheumatology
Board Certified in
Internal Medicine and Rheumatology"
FROM DOM: Many thanks to this
reader for providing us with the details of her blood testing. See
the original article at www.fms-help.com/030311.htm
(Topic #5) if you missed it.
16.
OVERACTIVE BLADDER CAUSES LACK OF SLEEP
From a
male reader--
"I have fibro, adrenal fatigue,
hashimotos, bipolar, hep-c and hypertension. I see an ND and I have tried many
things, but I feel like I'm living in Hell. The lack of sleep because of
the over active bladder is just crazy, my life is not worth living.
Because of my liver a lot of stuff I can not use - oh and I have sleep apnea and
I'm using a dental device for that. My friends have all but given up on
me. It is no fun to be around a sick person. I was on disability from
the hep-c when after having a bunch of dental work done I
became sick with one thing after another."
FROM DOM: I
could sure relate to a lot of this. See www.fms-help.com/insomnia.htm about the cruelty of insomnia and also my MEN WITH FIBRO
page at www.fms-help.com/men.htm. I have a lot of emotional support on my
homepage at www.fms-help.com. It can be very lonely to
be sick all the time. (I had to chuckle at something a friend said who has
had severe FMS/CFIDS for many years following a car accident. She recently
inherited money and a cousin came out of the woodwork and said to her, "You were
always my favorite cousin." She remarked to me, "That's funny.
I wasn't their favorite cousin when I was in bed on morphine for 3
years!!!")
17.
SUICIDAL FEELINGS
www.fms-help.com/suicide.htm -
a few thoughts from Dom
http://www.restministries.org/articles/art-speedupheaven.htm - from Rest Ministries about speeding up
heaven.
18.
GADGETS RUINING PEOPLE'S SLEEP
From a reader--
FROM
DOM: And even worse, forget the warnings about "texting while
driving." "Webbing" is going to be a bigger killer with all these "smart
phones" being operated by careless drivers. Gadgets, while good, can cause
a lot of pain and heartache in our lives too if used addictively or
improperly.
19.
DITCH THE TABLE SALT, NOT THE SODIUM
From a reader--
20.
ADRENAL FATIGUE SYMPTOMS COMPARED TO FIBRO/CFS
http://jenbusch.com/images/pdfs/Matrix.pdf - Snippet: "Symptoms of chronic fatigue,
fibromyalgia and adrenal fatigue can be confusing and similar, the free Adrenal
Symptom Matrix below shows over sixty symptoms of adrenal fatigue."
FROM
DOM: Fascinating chart!
21. IS
CFIDS RELATED TO AIDS?
www.fms-help.com/aids.htm -
Some call CFIDS "Non-HIV AIDS."
22. WHAT
IS FIBROMYALGIA?
From a scientist--
FROM
DOM: Some comments in this article will get your blood boiling! I
advise caution.
23. TV THAT
DEFILES
FROM DOM: I am
becoming increasingly selective of what I watch on TV. Many shows
these days are perverted. We don't need to put "garbage" into our
tired minds. I try to find shows that are uplifting somehow -
morally edifying or educational. I limit watching the
news because hearing about horrific tragedies in my community and
world that I can do nothing about is extremely distressing to my sensitive
nervous system. If you are depressed or in serious pain, turn off the
news!! It can make pain unbearable.
For a healthier mind,
think on things that
are true, honest, just, pure, lovely, of good
report, of virtue and of praise (Phillipians
4:8). My
main relaxation is reading (biographies or Christian
fiction) and watching The Waltons re-runs (my favorite TV show!) I delight
in pleasant diversions that don't defile mind or spirit. I long for purity
and righteousness, respect and honor. I appreciate Godly friends who
help my spirit soar and don't pull me down into the muck and mire of the world's
filth. I need all the positives I can get to stay healthy mentally and
emotionally. I begin each morning with prayer and Bible reading to
connect with God and get my heart and attitude right for the day. The
best time for me to read the Bible is when I first wake up. If I wait, my
busy day takes over and I can't seem to find time and don't have the same mental
or spiritual clarity. Here are the words to a great old
song:
"I Met God in the
Morning"
When the day was at its best,
And His Presence came like sunrise,
Like a glory in
my breast.
All day long He stayed with me,
And we sailed in perfect
calmness
O'er a very troubled
sea.
Other ships were
sore distressed,
But the winds
that seemed to drive them,
Brought to me a peace and
rest.
With a keen remorse
of mind,
When I too had loosed
the moorings,
With the
presence left behind.
Learned from many a
troubled way:
You must seek
Him in the morning
If you want
Him through the day!
24. AVOID
PSYCHIATRISTS & ANTI-DEPRESSANTS
http://articles.mercola.com/sites/articles/archive/2011/03/07/reversing-depression-without-antidepressants.aspx - in depth treatment of this subject by Dr. Mercola, dangers of
antidepressants, side effects, etc.
25. DEATHS FROM FIBROMYALGIA
From a reader--
"I am writing to say in the last year in our city we have two girls in
their 40s diagnosed with fibromyalgia The first one died from an accidental
overdose and the second one I am not sure from. This is shocking and just wonder
....is this normal?"
FROM DOM: Fibromyalgia patients
have increased risk of suicide and accidental death according to some
studies: http://arthritis.about.com/b/2011/01/30/fibromyalgia-patients-have-increased-risk-of-suicide-and-accidental-death.htm and http://www.medscape.com/viewarticle/730633. However, other studies contradict these
findings. Try a google search for deaths from
fibromyalgia.
26. BE KIND TO YOUR CENTRAL NERVOUS SYSTEM (CNS)
27. DOM'S
UPDATE
I am doing
very well these days! In fact, I can hardly believe that I am able to work
and keep up with things now, after suffering so many years of extreme
debilitation and illness from FMS/CFIDS. I will be 60 this year, so
it just shows that THERE IS HOPE!!! A list of things that
help me is at www.fms-help.com/what.htm. Each of us is
different, but I think my list is worth a read.
I must manage
my stress levels very carefully - see Tip #1 at www.fms-help.com/tips.htm, and I
have learned to say NO to things that would push me over the edge with my
health.
I still cannot
travel more than about 30 miles by car without debilitating fatigue (nervous
system / brain crash) - this weird problem began after working in toxic
mold in 2004 www.fms-help.com/mold.htm.
I have no
social life due to the restrictions I have to place on my activities, in order
to keep working, but at least I am alive, employed, pain-free and
illness-free. I never thought this was possible - especially if you read
my horrible fibro story at www.fms-help.com/fibro.htm and my
sad CFIDS story at www.fms-help.com/fatigue.htm.
However, I am
still not yet Hercules. I continue to deal with various aspects
FMS/CFIDS/insomnia, but nothing like the severe pain, debilitating fatigue,
unrelenting insomnia, crippling anxiety, and extreme depression that I
endured for so many years of my life.
My sleep
disorder began when I was 16 www.fms-help.com/insomnia.htm.
My FMS began overnight in June 1982 and CFIDS began in 1987 after a vicious
viral illness.
I hope that my
personal list www.fms-help.com/what.htm, as well
as my newsletters www.fms-help.com/newsletters.htm, help
readers who are still in the trenches of FMS/CFIDS....and what
makes matters worse is the social misunderstanding and stigma we endure by
having this "invisible" illness.
A list of
occupations my readers had when they became afflicted wtih FMS/CFIDS is at www.fms-help.com/occupations.htm.
I am wishing
everyone health and happiness!
Dominie
Bush
II Corinthians 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 families.
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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.
