A compassionate, informative newsletter for people with
FMS/CFIDS/M.E. and their families.
(Fibromyalgia -
Chronic Fatigue & Immune Dysfunction Syndrome - Myalgic
Encephalomyelitis)
"To comfort all who mourn, to console those
who mourn in Zion." Isaiah 61: 2,3 (NKJV)
Topics are in BLUE. Readers comments in
BLACK. Dom's comments in TEAL.
DON'T MISS RED
TOPICS!
1.
READERS WRITE
"Thank you so much for sharing your experiences, your heart
and your passions. Your 100 Tips for Coping with Fibro
was sensational www.fms-help.com/tips.htm. I have action steps I will begin
today!"
"Thanks for keeping us all aware
of the information out there. It is a daunting job, and I can tell you I
sure appreciate it!!! You and your information are a contributing factor
to my dealing with my fibro as well as I do."
"My husband has been dealing with the symptoms of Chronic
Fatigue now for [many years]. I loved reading about your experiences
www.fms-help.com/fatigue.htm, and I so appreciate you sharing them. It helps me
understand better what he is going through." [From Dom: See "Men with Fibro" at www.fms-help.com/men.htm.]
"I am thankful for all I've learned
from you over the past 10 years since my diagnosis. I can't believe it's
been 10 years since I found you, and you've made such a
difference in my quality of life."
"I just want to say how much
I do appreciate your kind words, information, and your expression of
personal faith. There are many websites with information on
Fibro and CFS, but few (if any others) that have the positive Christian
message that yours has. If all we have to live for is this life
than our health problems would be overwhelming and I would feel
hopeless. But because of the hope that I have in Christ I know that the
suffering of this world is only a dot on the timeline of eternity. I look
forward to my new and 'energized' heavenly body! Thanks
for your unique ministry."
2. THE
FIBRO EXPERIENCE
From a
reader--
"I'm 36 and a wife and mother.
I too was diagnosed with fibromyalgia. I feel like I've been cursed with
this terrible disease. Some days I can barely move. I feel like
i have jolts of electricity going through my body, and then other times my skin
hurts. I have trouble sleeping. Most nights I'm up until 4am and I
have to get up at 7 am. My family tries to be understanding but they just
don't get it. It is so hard for me -- a lot of times I feel
like my body is just worn out and I feel like a robot that somone pulled
the plug on. I'm always tired and irritable, and a lot of days I feel
like I just can't take it anymore, but I fight back those thoughts.
Thank you for all your great information."
From Dom: My
heart goes out to this dear fibro friend! My FMS began when I
was 30 www.fms-help.com/fibro.htm. I know how it is to feel like you
are 90, and the torture it is to be incredibly sleep deprived www.fms-help.com/insomnia.htm and still have to function every day, as well as the
suicidal thoughts www.fms-help.com/suicide.htm at times. I have a LOT of HELPFUL
info on my homepage at www.fms-help.com, as well as 100 Tips for Coping at www.fms-help.com/tips.htm. Also, you may want to review the list of things that help
me at www.fms-help.com/what.htm. A short article to share with friends and family who
don't understand what fibro feels like is at www.fms-help.com/mnif.htm. A list of things I've tried for sleep since 1982 is at
www.fms-help.com/sleep.htm. I am much better managed now in the sleep department, and I
do get relatively restorative sleep now on a regular basis, although it is
"drug-induced." I don't know what goes wrong with our hypothalamus and
brain chemicals when we develop fibro, but I thank God for meds and supplements
that help me survive from day to day. My circadian rhythm is shot, but my
body tends to want to stay up reeeeally late - the 4 a.m. sleep onset this
reader mentioned was exactly my situation (and getting up at 6:30 a.m. to go to
work.....UGH!!!......it was unbearable.) I am very fortunate to have
arranged my work schedule now for afternoons and evenings. My body just
hates mornings. But when you have small children at home and no one else
who can get them ready for school, you have to get up. I can't sleep
at all in the daytime, so if I don't sleep at night, it doesn't happen. I
know many of you can relate.
3. THE
CFIDS EXPERIENCE
Reader
1--
"I'm almost 30. This horrible
sickness has stolen my like from the very beginning. I was born without much
immunity to the streptococcus bacteria and by age four it had colonized and
given me scarletina. I lived, obviously, but without much life. I was always
weak and sickly growing up but assumed whatever it was I would out grow some
day. however it was quite the opposite. I took my first serious turn for the
worse when I was 19. The strep episodes began to be more intense and the
symptoms I now know to be CFIDS began to worsen. The next major turning
point was at 25 when a very serious bout seemed to crash my
immune system...from that point on my strength and stamina waned rapidly
as what little energy and health I had left slipped away...I began to
have whole seasons of debilitating sickness and it was hitting me
harder and lasting longer. But the worst was yet to come. Two years
later, all at once, I lost almost all of the mental faculties I had.
I became completely stoned, all the time, by some unexplainable fog. My
memory and observation skills all but disappeared. And my IQ, which had always
been upwards of 149, in a very short period of time, plumetted to 111!
So for the last three years Ive lost everything. Financially, socially,
intimately, job, family, friends. I had pretty much given up as all the
medical tests showed me to be in perfect health and left me written off as a
hypocondriac. It was then that, with nothing left to lose and nothing but time
on my hands and internet access, I decided to take it upon myself to begin
researching rare diseases and symptoms and medical case studies from scientists
and doctors all over the world. It didnt take long by cross referencing my
conditions to come to the ONLY medical state that exhibits every single one
of my symptoms...CFIDS. And interestingly enough, according to the studies
done by laboratories overseas, one of the four probable ways to
contract CFIDS is through long term bacterial colonization leading to
rheumatic fevers, such as scarletina, and eventually mutation into a micro
version of the bug, called an L form, that can inhabit at the cellular
level and become invisible to tests as well as resistant to
all prescription antibiotics. Sound familiar? SOOO...I'm just now
learning about all of this...I've only known this is what I have for two
weeks now. None of my doctors had ever diagnosed me correctly.
And I would find out the truth after I'd spent my whole life and all my
money and livelyhood chasing wrong answers, once I was too sick and broke to do
anything about it."
From Dom: My
heart goes out to this dear reader. It certainly does sound like
CFIDS. I too was a sickly child - not as sick as this lady, but I caught
everything viral going around. I grew up to be a sickly adult www.fms-help.com/fatigue.htm. Now at 57, I am much better "managed" with my symptoms with
things at www.fms-help.com/what.htm, but still must carefully manage my stress levels and I have no
social life. Must save my limited strength for making a living (piano
teacher) and doing something worthwhile (playing the organ for my church).
Everything else has had to go. However, based on how I used to be (almost
an invalid), I probably should have no complaints. The worst thing for me
is riding in a car for some reason. I can't drive or ride more than 30
minutes without a horrible feeling of mental fatigue and collapse coming over
me. This particular symptom became worse after I worked in toxic mold in
2005 www.fms-help.com/mold.htm. This reader's description of her symptoms is just
sooooo accurate for CFIDS. I hope that just maybe some of the
meds/supplements/lifestyle aids I use www.fms-help.com/what.htm may help her also. In past newsletters I have reported on
youtube videos of seriously ill CFIDS patients. Bedridden,
non-functional. I have been there too. I am thankful for any kind
of "life" I still have - my situation is at least managed now. I
just read a book called "Queen of the Dark Chamber" about a highly educated lady
born in China who had a post-malarial virus that hid in her brain and bone
marrow, so it could not be detected in the blood. She had to spend the
last 50 years of her life bedridden in a dark room without light or noise.
What struck me about her story is that the virus was not detectable in the blood
stream. So many of us with FMS/CFIDS have tests run and they all come back
NORMAL when we feel like we are dying! It just shows that this thing can't
be found in the bloodstream, at least not yet. Many people think we are
hypochondriacs. Truly, the only people who understand FMS/CFIDS are those of us
who have it!
Reader
2--
"I have SEVERE myofacial pain
syndrome, SEVERE FM, SEVERE CFS, and mild arthritis. I am 38, have
found few things that help me manage, but I am basically still debilitated
after a year and a half. I can do very, very little; have [2 young
children], an angry husband, and a family about to fall apart over this
situation."
From Dom:
Reader 2 wanted to know if she should go to the Fibro & Fatigue
Center. You can read about other fibromite's experiences at the F&F
Centers in my past newsletters - search at www.fms-help.com/newsletters.htm. Although no one has claimed to be cured (and it is VERY
expensive to go there), the doctors are knowledgeable and caring and truly
understand. A list of nearly 300 meds and supplements that Dr. Teitelbaum
uses with patients can be found online. Interestingly, I have tried many
of these same meds and supplements. My current list of helps is at
www.fms-help.com/what.htm.
4.
ACUPUNCTURE
From a
reader--
"I credit my remarkable improvement to a
wonderful acupuncturist I have been seeing weekly since late July.
She has given me my life back! Truly, I feel 95-98% better (I am
clear headed, full of energy, and have cut back on my natural remedies.
She hopes to alleviate me from most of them). I do realize all
acupuncturists are not the same, however, so I am greatly blessed with
someone who is a true healing artist."
5.
SAVELLA (MILNACIPRAN)
Info from a
reader--
Savella - What Fibromyalgia Patients
Need to Know
Tuesday January 27, 2009
Savella was approved by the
FDA for the management of fibromyalgia on January 14,
2009. While it was in clinical trials, Savella (a selective serotonin and
norepinephrine dual reuptake inhibitor) was known by its generic name, milnacipran HCl.
How does Savella improve fibromyalgia symptoms?
What side effects, warnings, and precautions are associated with the drug?
Savella is the third drug to be approved for fibromyaglia -- Cymbalta and Lyrica are the other two.
Savella is expected to be available in pharmacies by March 2009. You can learn
more in Savella - What You Need to Know.
6.
CHLAMYDIA PNEUMONIAE
From a reader--
"Have you ever encountered anyone
with systemic Chlamydia Pneumoniae? There's a fascinating history of a
microbiolgist at Vanderbilt U. who had research funds to find something to
combat CFIDS. He developed an amazing protocol of antibiotics aimed at
treating the four (or, perhaps) five different states of CP. Again you may
wish to check it out if you haven't already. The site is www.Cpnhelp.org."
7.
BEAUTY CONTESTANT DIES
I sent out this tragic
news article last week--
I received some
insightful comments about this article:
Reader 1--
"I read this with such interest, as
you may recall I am a microbiologist. I used to
frequently work with Pseudomonas aeruginosa. There are
several natural, God-given elements and herbs that perhaps could have been tried
for this girl. Colloidal silver is excellent to try for
antibiotic resistant bacteria, because it kills all bacteria and there is no
resistance to it (at least not initially). Also they could have tried
olive leaf extract in high doses. When will our docs wake
up and realize that big pharma doesn?t always have the answers. Dcotors do
NOT have to stop with antibiotics, there are other cures (several of which can
be given in conjunction with traditional drugs without contraindications).
Breaks my heart. I so hope that she was a believer and is now in the
comforting arms of the Lord."
Reader 2--
"They knew it thrived in oxygen-poor
environments and was resistant to antibiotics, why didn't they try
hyperbaric oxygen???????"
From
Dom: How DREADFUL for that dear
girl!!! I also read a story recently about a lady who had her hands and
feet amputated after catching an infection followng giving birth. How
horrible!!! There are various things that can be tried besides antibiotics
to fight infection. I know of some essential oils that are
powerful against bacteria, fungi, and viruses. But maybe this girl's
infection was so fast-spreading that such a drastic measure had to be
taken. But to live without hands and feet to save your life is really
questionable. You can write me dombush@bellsouth.net for info
about essential oils - they just might save your life, or at least
prevent a lot of suffering. I have been using them for several years
now for all kinds of problems related to FMS/CFIDS. See my oils page
at www.fms-help.com/oils.htm.
8.
JEWELRY, WATCHES, PIERCINGS & DENTAL FILLINGS MAY CAUSE CHRONIC
PAIN
From a
reader--
http://www.truthpublishing.com/Live_Without_Pain_p/print-cat21535.htm - Your nervous system is
electrical in nature, and the presence of metals can disrupt or distort the
normal flow of electrical signals in your body. A piece of
jewelry or a dental crown in the wrong place can, in effect, "break the circuit"
of your nervous system, resulting in an imbalance that eventually leads to the
perception of intense pain.
From Dom:
I have a friend who thought she had FMS, but when she stopped wearing gold
jewelry, her symptoms went away. I forgot about this until today when a
reader sent me info about this book. I have a gold crown and my mouth is
paved with mercury. I haven't had my fillings replaced because: 1) I'm a
dental chicken - thanks to my childhood dentist not using novocaine except
for extractions; 2) not everyone who has their mercury fillings replaced notices
improvements; and 3) I have no finances to do this. Plus,
I would have to be knocked out cold for a dentist to replace all those
fillings! However, this info is certainly intriguing! [BTW,
don't miss Topic #9 below.] I got these responses from
readers--
Reader
1--
"I am with you. My
dentist from childhood days totally ruined the dental
issues. I have numerous fillings and lots of missing teeth, but the
thought of going to a dentist for any reason, unless I have to totally stresses
me and I do not sleep. I too would have to be put under to get any serious
dental work done. Not to mention the dentist would need extra insurance
for himself if I am awake and he hurts me."
Reader
2--
"I am heading to the dentist in a
few weeks to have extensive work done. I am having the remaining teeth I have
left pulled and replaced with dentures. My husband and I have
talked about this mercury thing several times. He often tells me that my
symptoms are exactly to the ones that he had before he had all of his teeth
pulled. Once I get healed up from all of it, I would be happy to report on
whether or not my chronic pain and muscle weakness is
relieved. Also, I was wondering about titanium because when I
had my tubes tied, it was some different form where they didn't tie them off or
burn them, they actually put titanium clamps on them. I have been
considering having them removed, but like getting dentures it is costly. If I
knew it would improve my health I would save the money to do it. "
Reader
3--
"I also had a mouth paved with
mercury and was a dental chicken. Circumstances forced me to get caps and
bridges last summer. My dentist, "The Gentle Dentist"
used Nitrous Oxide on me. I will never have dental work
again without it. He also gave me a mild sedative to take one hour before
each appointment. I did not feel any less pain after all the work was
done, in fact, I had a terrible fall, and winter hasn't been much better.
I'll try not wearing any rings or earrings for awhile and see what
happens. [The sedative for dental work
was] Triazolom, .025 [Halcion] and basically it just
helped me relax. I was a little loopy when they would finish, but it only
lasted about an hour. And I would sleep really good that night. I
would have brought the Nitrous canister home with me if I could
have."
Reader
4--
"Interesting but, why don't
more men have this these problems, they get fillings and
piercings!!"
Reader
5--
"I've read that having gold
and amalgam (silver fillings) is worse than just having amalgam
fillings."
Reader
6--
"Although I find this information
useful, it can also be frustrating - I have 16 gold inlays in
my mouth and there's no way I could afford to remove them. Some of them
probably have mercury underneath. Of course I've read for years that they
should be removed, everywhere form replace with porclain to completely removing
my teeth and getting non-toxic dentures. Haaa, suuurre. And then
there's the controversy over root canals too - so if you have
an absess you're supposed to get your tooth pulled. I'm a great believer
in alternative ways of doing things but sometimes the information serve to
frustrate people that can't do a darn thing about it. What about people
with joint replacements - supposedly the titanium used in joint
replacements is inert but probably it it is not. So, heeyyy, get your hip
replacement removed, haaaa. Never the less, we (supposedly) have freedom
of speech and I like to have all the information that I can, even if I can't do
anything about it."
Reader
7--
"I wonder if this is why so many of
us have pain from underwire bras. I recently tried an
underwire bra again because I wanted more support and my breasts (pardon my
honesty here) ached terribly for two whole days. The last time I wore
underwire bras regularly, I had pain under my arms in the lymph node area and in
my breasts and I never knew what was setting it off back then. The doctor
fast-tracked me for a mammogram and everything looked okay. After this recent attempt with the underwires, I will
never try that again! I'm so glad you sent this because jewelry has
bothered me also for several years. I always thought it was because I
already had pain, but who knows, maybe this article has some validity. I
also have mercury fillings and may look into this book to find out the
safest way to have them removed (ugh)."
Reader
8--
"Look into laser dentistry! It's
supposedly PAINLESS, even for things like root
canals! The laser is so hot
and so fast, you just don't feel any pain. And there's
certainly no
"whhheeeeeeeEEEEEEeeeeeeeEEEEEE" that goes on and on...
I haven't had it
myself, but I've heard good things
from lots of sources. Relatively few
dentists have the lasers, because they are somewhat
expensive. But there's a
guy within 20 minutes of our rural location who has one, so
there's probably
one near you. Maybe better to FIND one before you NEED
one??
I have been hearing about the "mercury in the fillings"
bit for many years. All the
scientific studies show no significantly higher
mercury levels in a variety of tissues for
fillings vs. none. You could accumulate more mercury if you ate a lot of tuna
and salmon!
But, the rumor still seems to hang around. I don't think
you should sweat too much about
having your fillings replaced.
As far
as the metal-jewelry/electrical-field thing: not a lot of basis in science for
that
either, IMHO. Some people swear by the relief they get from wearing
copper bracelets
(which would contradict this theory). Ah,
well, who knows? Taking off your jewelry and
wristwatch for a few weeks
certainly takes less of a commitment than having all your
fillings
replaced!!!"
Reader
9--
"Like you, I have a mouthful
of mercury fillings and will not ever have the nerve or the money to get them
replaced. And besides, I had them for thirty years before my problems
started, so I don't think this theory applies to me or you. It's a good theory;
the body is affected by positive and negative charges, but ...I cannot believe
that you had such a cruel dentist who didn't anesthetise his patients
for fillings. That is incredibly horrible! Me, I had a
phobia about needles and would faint. I've been wearing magnets
around my ankles as I have so much pain in the top of my feet and for
some reason they help. No one knows the reason for this, but it must have
to do with the negative and positive ions again, maybe promoting
circulation? If that's the case, I don't know what we're going to do on
Dec 21, 2012. That's when the poles are supposed to reverse!"
Reader 10--
"I agree with you 100%: without knowing FOR SURE
that all that dental work would cure us of FM, this is NOT a path I would go
down. I too have tons of mercury fillings (I am 52, and I bet everyone
around our age has a mouth full of fillings!!! Didn't the Twinkie
and Snowballs come into their own as lunchtime dessert in the
60's???!!!) and a gold crown, but as you said, not everyone that has this
extensive work done is 'cured.' It is an interesting idea, and may indeed
be a contributing factor for some people who have fibro, but I just can't wrap
my brain around the idea that this is the sole cause of our
problems."
Reader 11--
"The only metal i used to have was earrings, silver,
nothing else, and i used to remove them alot. My symptoms were horrific
when i was younger. I have No fillings, never had fillings. In the
past, i barely had any jewelry. For a short time i wore a copper bracelet for
arthritis. Occasionally a watch which more often than not had leather or plastic
band not metal. These days, the past few years i have more piercings
throughout my body, ( i am now 34), and i do not feel that my pain levels
have Increased in that time. I have my days where i can barely walk,
muscle spasms so bad i can't hold anything, headaches consistently, chronic
fatigue, insomnia, all the normal stuff... but i am also
holding down a full time job as difficult as it is. Nearly 5 years ago i
fractured my spine in a terrible accident, so i have that permanent pain to
deal with as well. But i can honestly say that in the past 5
years since starting my body piercings, i do not believe my pain has
increased dramatically. My piercings are silver, yet my
earings and necklace i now where permanently are gold."
Reader 12--
"I wrote about this in my book BEYOND THE DARK CLOUD
(Thea Schlosser) in 1996. We all need to be checked out for worms
twice a year. Very important. Don't have root canals - the
dentist has to be a dentist who knows how to clean the rest of the root canal
[area]. I was advised to have my rooth canal taken out - could not
believe what was still on the bone where the tooth was. It scared me
- then we wonder why we are ill."
>
9.
DENTAL FEAR
10.
"EXPLAINING 'UNEXPLAINED ILLNESSES'"
From a
friend--
"There's a book called
'Explaining Unexplained Illnesses' by Martin L Pall,
PhD. Dr. Jacob Teitelbaum calls it 'A brilliant treatise. . .
Exellent and groundbreaking work.' Basically, it theorized that CFS/FM and
several other illnesses are all linked to nitrus oxide metabolism
(or something like that) -- the NO/OHNO
cycle."
11.
LIGHTNING PROCESS & REVERSE THERAPY
From a
reader--
"Thanks for posting the
article on the 'Lightning Process' that I sent you back in November. I was
surprised but also disheartened and saddened by some of the skeptical
responses that came in, accusing the 'Lightning Process' to be a sham. I
remain open minded as I have not done the course, but I would not criticise
something that I knew so little about! Saddened too that so many people live
without hope that they will ever get better or improve again. The reason
for sending the article to you in November was because my UK friend had
just done the course and she considers she is cured of CFS. After she had read
your page with the comments from others about the 'Lightning Process', she
sent me this comment herself.
'I know it seems hard to believe, but the way the
Lightning process is structured and taught is very simple, yet profound. I find
it difficult to explain, but in my own words it's like re-wiring your
neural pathways in your brain, creating new fast track information that
instantly makes you feel well, letting the old neural pathways grow over with
grass (Hypothetically speaking) You know I tried
so Very Many ways. This just worked, and not just for me but all the people on
the course. I do hope you find a practitioner out
there'.
Whilst surfing the net, I
have today discovered that the 'Lightning Process' could be likened to
another therapy called the 'Reverse Therapy' - an
educational process based on the research carried out by Dr. John
Eaton since 1996 on the relationship between mind and body, and between
the emotions, the brain, the nervous system and the immune system (these studies
are sometimes known as PsychoNeuroImmunology). Dr. Eaton then developed a series
of techniques to help people recover from a variety of illnesses, including
Chronic Fatigue Syndrome and Fibromyalgia. Dr. John Eaton runs his practice from
his Harley Street clinic in London and has his own website
http://www.reverse-therapy.com/
On his website there is a free downloadable
e-book which explains the theory of the connection between the
emotional, mental and physical element of our makeup. I have been
following the idea of this connection of the 3 for some time, but have
never read such a good description in easy layman's english of how it comes
about. I thought that your readers may well benefit from reading the
information too. I think that what it does, is clarify some of the issues that
come up about ME/Chronic Fatigue Syndrome/Fibromyalgia being 'all in the mind'
or not. See what you think......http://www.reverse-therapy.com/pdf/reversetherapyforhealth.pdf
As for myself, if the 'Lightning Process' comes to [my area]
( if there are enough bookings they will come) then I will hopefully be
able to participate and will let you know the
outcome."
From Dom:
Indeed our bodies, brains and minds and their complex interaction are a
mystery! We know they are connected, but this science is in its
infancy. A fascinating subject, though! I have reported on Reverse
Therapy in past newsletters. You might try a search at www.fms-help.com/newsletters.htm. I know it does help me to meditate on and place my
faith in verses like, "I can do all things through Christ who strengthens
me" and "God has not given us a spirit of fear, but of love, and of power,
and of a sound mind." These have helped me so many times to be stronger in
mind and body.
12.
THE GREAT EQUALIZER
From "Sound Bites" -
sent to me by a friend--
Affliction is a great equalizer. It makes us all brothers and
sisters in a very special way. Almost anyone who has ever shared a
hospital room remembers their roommate; they have traveled together in the
fellowship of suffering, and even if they never see each other again, they often
feel uniquely close. This is partly because pain treats us all
alike. It's easier to endure sickness in a private room than in a ward,
but when you have to depend on a nurse or an aide for bedpan and bathing, it
makes no difference whether you're rich or poor, learned or ignorant. And if
you're accustomed to being independent, the burden may be all the harder to
bear.
In 1893, shortly after Grover Cleveland had come into his
second term in the presidency, it was discovered that he had cancer of the
throat and jaw. National leaders feared that if his illness became public
knowledge, the shaky financial condition of the country might grow into a full
panic. So they arranged for a medical team to join the president on a
yacht, and skilled surgeons operated as the craft rolled up the East River. "If
you must have surgery," someone might say, "that's the way to have it."
Perhaps. But Cleveland wrote later, "I have learned how weak the strongest man
is under God's decree; and I see in a new light the necessity of doing my
allotted work in the full apprehension of the coming night."
Pain is a great equalizer. Peasant or president, rich
or poor, the dimensions are pretty much the same.
-- J. Ellsworth Kalas in If Experience Is
Such a Good Teacher Why Do I Keep Repeating the
Course?
13.
CHRISTIAN FIBRO/CFS SUPPORT GROUPS
Looking for a
Christian Fibro/CFS Support Group? Here's a list--
Fibro-Research Support Group
Fibro Splash - Christian Support
Group for men and women with fibromyalgia (Rest Ministries)
Christian Support for Chronic Pain
Group
Living with Fibromyalgia and Chronic
Pain - Support Group for FMS/CFS
Christians with Fibromyalgia Support
Group
FibroChicks - interdenominational
support group for women with fibro
Saved by Grace - Christian support
group for people with CFS
Aroma of Christ - support group for
people with FMS, CFS/ME, MCS, etc.
Christian chat group for people
with FMS & CFS
Christians with Invisible Illnesses
Support Group
FibroKids - for parents of children
with fibromyalgia (new support group)
14.
MERCURY FOUND IN HIGH FRUCTOSE CORN SYRUP
From a
reader--
"In today's paper, special insert
'Livingston Entertainment' (guess they thought this was entertaining), it
says, 'Almost half of the tested samples of commercial high-fructose corn syrup
(HFCS) contained mercury, which was also found in nearly a third of 55 popular
brand-name food and beverage products where HFCS is the first or second highest
labeled ingredient.' You can read more at www.atsdr.cdc.gov/mercury."
15.
DECREASED GREY MATTER IN BRAINS OF FM PATIENTS
From a
reader--
Fibromyalgia Meeting at
University of Florida
Topic: Decreased Grey Matter of FM
Patients
Functional brain imaging (fMRI) has
shown significant dysfunction in many pain related brain areas of FM patients.
Our own work demonstrated that FM patients require less painful stimuli compared
to normal controls to have the same pain. We have recently started to
investigate grey matter brain changes in FM patients. We hypothesize that
excessive activation of pain related brain areas can lead to cell death and/or
brain atrophy. THis means that less neurons may be available to process pain
related information in FM patients. In addition, other investigators have found
that FM patients have a 9 times faster reduction of grey matter over time than
normal controls. Dr. Staud will share his findings related to this research at
the Annual FM Meeting in May 2009. Please Send Questions and
Comments to: painresearch@medicine.ufl.edu.
16.
VECTOR-BORNE DISEASE
Note from Dom: A
vector-borne disease is one in which the pathogenic microorganism is transmitted
from an infected individual to another individual by an arthropod or other
agent, sometimes with other animals serving as intermediary hosts.
From a
reader--
"I have a CFS diagnosis since
1990. Sick since 1983. I gave birth to my daughter in 1983. She was healthy
until she had an emergency appendectomy 1/07. With my awareness, I brought
her to a CFS/FMS doc. She wound up with a "Chronic Lyme Diagnosis" and
Bartonella. Since then, I got tested and one other CFS/FMS person got tested. We
are both getting Chronic Lyme Diagnosis. Have you looked
into the connection of CFS and FMS actually being Borellia or bartonella or
babesia or mycoplasma? One gal in my group was so ill and gave birth
to a child with a handicap. She was given a FMS and CFS diagnosis but wound up
getting a severe babesia and Lyme diagnosis 2 years ago. Perhaps CFS
and FMS should be called neuroendocrine disorders so people are not
mislead.....??????
There is a yahoo group of people with CFS and FMS
diagnosis who eventually found out the CFS and FMS were symptoms of Lyme. IF
Lyme is caught early, it is treatable. So, I'm worried about the newly diagnosed
and those of child bearing age. All this is passed on in utero and
sexually.
An epidemiologist a UNF is doing research. If some in
Florida interested in testing for Lyme it is free BUT for research purposes
only. To my knowledge the lab of choice is Igenex in California for Lyme. And
the Frye "photo" blood test in Arizona. Frye puts a sample of blood under the
microscope and send the "picture". Bartonella, Babesia and Mycoplasma are looked
for. Testing is said to be best when symptomatic, when menstrual and at a new or
full moon since lunar parasite.
From
Dom: Wow. That's an impressive and comprehensive report from
Dr. Burrascano! I have reported on Lyme, babesia, neuroendocrineimmune
disorders, in utero influences, mycoplasma, parasites, "Under Our Skin" video,
etc. in past newsletters. You can find these topics and others on my site
and in my newsletters by using the SEARCH box at www.fms-help.com.
Got this response from a
medical researcher--
"The in utero perspective
would suggest that these individuals had been exposed to a toxin in utero that
did not allow them to fight off micoplasms and other infectious agents like a
normal healthy person would. And if you already have a chronic illness,
you're far more likely to pass inadequacies on to your child. For
instance, if you have a low thyroid, chances are higher your child will have
thyroid issues because they did not get sufficient thyroid hormone while in the
womb. I'm really wondering about the Lyme diagnosis. I'd love
to know how those doctors came up with it in absence of an acute infection. As for
CFS/Fibro being neuroendocrine, check out Dr. Jacob Teitelbaum. His whole
premise is that it hits the hypothalamus first and crashes all
systems (endocrine included). The theory is already out there."
From Dom: My sister-in-law, who
has a Ph.D. in virology, told me nearly 20 years ago that all of my
symptoms were coming from the hypothalamus! I tested negative for Lyme 2
years ago, assuming the test was correctly interpreted.
17.
FORGIVING PAST HURTS
This is such a good
article! Unforgiveness can sure ramp up our stress levels and we don't
need that! This article can help!
Reader
1--
"Wow...it's like you're reading my
mind or something. I don't have a lot of time tonight to read this through, but
so far, this just might be what I need to forgive myself...even if others can't
forgive me."
Reader
2--
"Wow Dom, I
needed this today. My self esteem has taken such knock this week,
and lately, that I was clinging to every bad word my husband has said in the
last few weeks. Yesterday I cried myself to sleep and in the process
making a mountain out of a molehill. I am so glad I read this at the right
moment, as I was going to give him a talking to tonight, and now I know, let it
go...just let it go, if I don't, the one who is damaged the most is myself, and
our relationship."
Reader
3--
"There's a place for
forgiveness, but not as an alibi for husbands to
just keep mistreating their
wives. Matter of fact, my mother, the
first 3 or 4 years of their
rotten marriage, was like a lamb with my
out-of-control father (who, 5 weeks
after his 3rd wife left him,
admitted to me when I was fresh out of college
that "I never loved
your mother, I was just sexually attracted"); only when
she finally
started lashing back at him, then, for 24 hours at a shot, he'd
behave
himself. The kinder she was to him, the more forbearing, the
more
poisonous he acted. (He was my favorite parent until I was 21 [I
had
no favorite parent again till I was 41, LOL] , so I'm not saying
this
out of spite or anger; between the age of 15 and 21, I worshipped
him
as God, not yet knowing the true God.)
Note that Ephesians says to
HUSBANDS (not wives) that in respect to
their wives, they need to DIE to
themselves as Christ died 4 the
church, and they need to NOURISH &
CHERISH their wives as they do
their OWN FLESH. (Why isn't this said to the
wives? Ever wonder about
that?) If you look up the Greek words
for those 2 verbs you'll find
they have the idea of treating her like she was
a precious gemstone,
pampering her, and providing an atmosphere for her where
she can
develop to her FULLEST potential. In another place, Peter
exhorts men
to "not be harsh" with their wives, and to "live with them in
an
understanding way." Now, obviously, he was addressing the tendency
of
husbands to be harsh with their wives (and I've seen plenty
of
Christian guys do that) and to NOT live with their wives in
an
understanding way. Most men, even Christian ones, are
basically
brutes: selfish, unfeeling, domineering and cruel. (If
your hubby
isn't, count yourself lucky.)
One last comment: in
one of the Gospels, Jesus says "if your brother
repents and asks your
forgiveness..." It's contingent on their asking
for forgiveness, tho
the hyperspiritualist loves to make it sound like
we all need to be what
amounts to masochists, always and forever
forgiving, which amounts to being a
spiritual doormat. Let's not
forget "be angry and sin not," and "Answer
a man according to his
folly, lest he be wise in his own sight" and "Speak
truth with one
another," and if a person doesn't repent, eventually, they're
to be
excluded from fellowship.
And no, lest there be any
misunderstanding, I'm not trying to argue
with you or anything like
that. My beef is with the
hyperspiritualists who would have us all be
masochists and ignore the
need for justice, which is JUST as important as the
need for
forgiveness. Forgiveness is a 2way street."
[From Dom: Well-stated and I agree. Read the
DISCLAIMER at the top of my MARITAL HARMONY page
www.fms-help.com/marriage.htm.]
Reader
4--
"Thank you for this email?..it was
just what I needed to hear today. I love how God places HIS message just
where we are going to be."
18.
FIBRO-NAP
From a
reader--
"My friend tried Fibro-Nap www.fibronap.com, and said it
did SOMETHING, but she found it hard to put into words....said I would have to
try it for myself....I was hoping she was going to rave about how wonderful this
was !!! Anyway, maybe you will get some responses from Fibros who tried
this and loved it."
From Dom:
I reported on this intriguing Fibro-Nap CD that helps you sleep in my Dec. 2006
newsletter - below is the article reprinted. It sure sounds worth a
try! Sleep deprivation creates so much misery for us! According to
my doctor (internal medicine) my sleep disorder is at the root of all of my
FMS/CFIDS complaints. He now has me managed fairly well for sleep
www.fms-help.com/what.htm, but it has
been a LONG journey for me (almost 40 years) to find what helps my particular
kind of insomnia--
"Just a quick note to let you know i
have found a great CD for helping me sleep - it is from a company called
POWER-NAP L.L.C. -- they have different CD's for napping - i
told them i had fibromyalgia and that i had a hard time sleeping and they said
"we have a great CD for fibro-people" - well i ordered it and
boy does it HELP!! it is called FIBRO-NAP - you put the headphones on and it
plays for 30 min. and off i go to la-la land - i even use it when i go to bed at
night - it does help so much when i get home from work - i close the bedroom
door - turn the lights out - and after 30 min i feel very good - i was very
surprised - so i tried it when going to bed at night - it works as well - and
you can listen to it over and over --- somehow it takes you through all the
stages of sleep - so you feel like you have slept properly -- so i hope people
will try this - i give it my personal recomendation. thanks for listening and
have a blessed day."
19.
ARE YOU ON TOO MANY MEDS?
I just
heard from a reader who is taking a long list of powerful meds but not
feeling any better. She is thinking of stopping everything and
just starting from scratch. This may not be a bad idea if you
taper off gradually. I've been down that road too. I stopped
everything that wasn't making a positive difference in 1996 after 14 years of
battling the pain, fatigue, depression and insomnia of this wretched illness -
my story: www.fms-help.com/fibro.htm. I
didn't feel any worse for stopping (I felt just as bad....) and then I got a
computer that year and started finding natural things that helped. The
first thing I found enabled me to become 95% pain free very quickly [write
dombush@bellsouth.net for info]. It also helped with
fatigue. From there I went on to find other natural things to stock my
arsenal for fighting this battle.
Around that time
I knew of 3 women who had to go to psychiatric lock-up for taking too many
prescription meds (an average of 28 each!) before their systems totally
crashed!! One was my aunt! It is not a nice thing to
contemplate.....basically "rubber room" time. Then their docs trimmed down
their meds to just 4 or 5 that they truly needed.
For me, if it
weren't for the sleep disorder, I would be down to 1 or 2 meds max. But
I'm thankful to at least be able to sleep now! 40 years of experience with
insomnia....what a way to live! I'm thankful for meds that help me sleep,
but also for the many natural things that help keep me more functional than I
would be without them, as I have to be on the lookout for viruses, bacteria,
infection and fungi that threaten to take my system down. I need immune
support, and that's why I have used the powder since 2001.
The facts of
life is that I have to keep working in order to survive, and these things I
have to take help me carry on from day to day. I know the pain,
frustration and misery of this illness, so I am passionate to share what I know
with others - anything that could possibly alleviate
the suffering.
There's no
magic bullet cure out there (despite what the TV ads say), but various things
make sense to try, so do your research. Hey, at least we have the
internet now! When I was first diagnosed in 1982 there was nothing but the
dusty Merck manual in the downtown library for me to read 3 paragraphs about
what was then called "fibrositis" and it said we were depressed and to give us
antidepressants - read the interview with Dominie www.fms-help.com/interview.htm for my
thoughts during that dark time of initial diagnosis and the ridicule and
misunderstanding I went through.
I continue
to be intrigued that many of the things prominent fibro doctors are now
recommending to their patients are things I found by trial and error - see
www.fms-help.com/what.htm.
20.
CONGESTIVE HEART FAILURE (CHF)
A dear
friend who is going through major heart problems sent me this site about the
downhill slide of Congestive Heart Failure (CHF) www.jonsplace.org/rel/downhill.htm. Was I ever surprised by this man's opening words
- it sounded exactly like what peoplee with severe FMS/CFIDS
experience!
"I have had congestive heart failure
for about 6 years now. I can't catch my breath so I speak in
short sentences. I can't get to sleep at any regular time so I
can't keep appointments and I am always very
tired. My arms and legs, feet and hands go numb for a
half hour at a time. I am devastated when I catch a cold, sometimes for
a month. Fatigue crushes me and no amount of will power can
overcome it. Light-headedness sometimes prevents me from getting up out
of a chair. Social problems are even worse. Going to
the movies with my family is difficult at best.
Extended trips to the shopping mall are risky business.
Family vacations are a dream never to happen again.
Even going to a morning church service is difficult. Grocery shopping
is like climbing Mount Everest and taking my dog to the vet is
a marathon."
From Dom again: Read my CFIDS
story at www.fms-help.com/fatigue.htm.
Oh my! I could have written this myself, and so could many of my
readers. Strangely, I read a statement in an essential
oils manual last night that said insomnia can be caused by heart
problems! The only reference I have ever heard of before to the heart has
been the low blood volume / tilt table test info that has been in a previous
newsletter or two www.fms-help.com/newsletters.htm. My insomnia began in my teens www.fms-help.com/insomnia.htm (40
years ago) and my great doc (internal medicine specialist) believes that all of
my problems could be helped if I could get restorative sleep every night.
He changed my meds last year www.fms-help.com/what.htm and
I am finally getting consistently better sleep - it has made a huge
difference in how I feel. But who knows what caused the
insomnia?
21.
ABILIFY
I was talking to an M.D. the other
day and he told me that NO ONE knows what causes FMS/CFIDS and
that medical science has absolutely no handle on it at all.
(This doctor speaks the truth!) We discussed the TV ads for fibro
drugs (Lyrica, etc.), and he said the side effects for some of these drugs are
terrible! He stated emphatically that Abilify was the most
dangerous drug out there. It is being prescribed now for
depression, but was originally for schizophrenia. He has taken
several of his patients off of Abilify due to very bad side effects, and said he
would never prescribe it for any of his patients.
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