10. OUR STRANGE
SLEEP PATTERNS
From a reader--
"Today I woke up about 7:00 am and felt so
calm and relaxed, I read and dozed off to sleep and woke up about 9:55 and felt
anxious and horrible again. Not sure what gave me that little oasis of
calm. I liked it."
FROM DOM: Having a
sleep disorder is so baffling! Our brain waves and brain chemicals are not
working correctly. My insomnia story is at www.fms-
help.com/insomnia.htm (had a sleep disorder since age 16. I am
now 58.) A list of everything I've tried for sleep is at
www.fms-
help.com/sleep.htm. I am managed fairly well now after decades of
suffering - my current list of things I take is at www.fms-
help.com/what.htm.
11.
SAVELLA ( MILNACIPRAN)
From a reader--
"I have stopped Savella - side effects were
way too debilitating."
FROM DOM: Search
my past newsletters for more about Savella (use Google box at the end of this
newsletter).
12. IS FMS
GENETIC?
From a reader--
"My sister was diagnosed with Fibro
too just recently at 42, but her condition is mild compared to mine.
Hmmm...family connection?"
FROM DOM: Lots more about this subject in past
newsletters - use Google search box below.
13.
DISABILITY FOR FIBRO
From a
reader--
"I was diagnosed in my
late 20's (now 40) and SS has brought up my age twice when they denied me for
SSDI. I'm now waiting for a hearing. I hope I get an understanding judge.
Your prayers would be appreciated."
14.
ACTIVIA YOGURT
From a reader--
"I just wanted to make a note about the Activia
yogurt that a reader suggested. It claims to have more strains of
probiotics but it is full of sugar! One of the dietary disasters we are
trying to avoid. I use plain yogurt myself and add fruit of veggies to
it."
FROM DOM: Good
point! Sugar feeds yeast (candida). I take an acidophilus
(probiotic) capsule daily. My complete list of things that help me is
at www.fms-help.com/what.htm.
15. EXERCISE & FIBRO
From a reader--
FROM DOM: If the doc's
solution were this easy, all fibromites would be healed. I even hear
from professional athletes who are now debilitated by fibro. So much for
regular exercise being the answer. I have much to say about exercise,
blood flow, etc. in my newsletters and site www.fms-
help.com. Try a google search in the box at the end of this
newsletter. I think fibro has more to do with the clumping of red blood
cells, which hinders them from transporting oxygen efficiently to the brain and
body tissue. Under a darkfield microscope, the red blood cells should
look like Cheerios floating in a bowl of milk, not like a chain or a
cluster of grapes. Powerful OPC's and stabilized liquid oxygen drops in
water can help the unclumping and thereby enhance the transportation of oxygen
to the brain and the cells. BTW, OPC's are one of the few substances that
can cross the blood/brain barrier. For brand of OPC & oxygen drops I
use, write dombush@bellsouth.net. Others are not as
effective, if at all.
16. 1,001
USES FOR WHITE VINEGAR
From a reader--
17.
MANAGING FIBRO
From a
reader--
"My
Fibro has been ok, not great, but it sure goes down hill when I don't keep up
nutrition - food and supplements."
18. OXYGEN
DROPS & HERPES VIRUSES
From a reader
using the oxygen drops--
"I have NOT
had the flu or the cold...and I get so sick so fast! when someone sneezes
in public, I just KNOW I will get sick; my grand daughters and my daugter have
all been sick and I have not been sick in the least bit and THAT is saying a
LOT. I did not equate it with the oxygen drops, though. wow...might really
be something!"
FROM DOM: See the link
between herpes viruses and FMS/CFS at www.fms- help.com/virologist.htm. The oxygen drops help kill the virus. I have not had any cold or
flu since I beganusing the drops in August 2009. This is a miracle for
me. As a CFIDS patient since 1987 www.fms- help.com/fatigue.htm, I have been a victim of every virus that came
along. I could not continue working as a piano teacher at a school
of music www.fms-
help.com/students.htm if my
health had not improved because of being in such close proximity to sick
children nearly every day.
19. 50
HOUSEHOLD USES FOR BAKING SODA
From a reader--
FROM DOM: We all need
to have less toxic chemicals polluting our homes. These are interesting
ideas.
20.
DESCRIBING FIBROMYALGIA
From a reader (trying to
describe FMS to her family and friends)--
"I know I don't
look sick & you don't understand. It is hard to understand unless you
experience it. I feel so exhausted I can't function, even when I've been at rest
for hours. My muscles ache & burn like I've been over-exercising, only I
haven't been exerting myself at all. It's like having a leg-ache or charley
horse all over my entire body. My body is stiff & achy and my skin even
hurts to be touched. I feel like I have the flu. I can't remember things, form
thoughts, find words or keep my train of thought. I feel completely helpless
& disabled by a silent unexplainable illness that makes me want to crawl
into bed and never come out. I'm exhausted, in pain, anxious, helpless,
isolated, disappointed in my limitations & feel like a complete failure. 99%
of the population thinks I'm fine because I look fine.It seems like I can't find
enough right words to explain this. It never goes away. I never get well
& even things I enjoy are now intolerable. I miss my life and I miss being a
productive, healthy, functioning member of society. I have gone from being the
major bread-winner to barely able to work. This illness affects me
physically, emotionally, mentally and in even more ways than you can
imagine. I want to be well, please be patient and try to understand that
what I can do one day I cannot do another day, that I don't like being confined
to bed for almost all of my available time, that I hate feeling this way and am
glad you don't understand what I am dealing with; if you did understand it, it
would me that you are condemned by FMS too, and I don't wish that on
anyone!"
21. LYRICA
COMMERCIALS
From a reader--
"My own daughter and sister are [FMS] skeptics and
I have let them read everything you have sent me. It hurts me very deeply
that I do not have the energy to do even half of the things I used to do. My
daughter has gotten very upset with me for having to cancel something to do with
my grandchildren. She and my sister kind of joke that I'm just ALWAYS
sick. I wish the MEDICAL field would come out with more concrete proof so
we had a "REAL" disease in other people's minds. One other thing that
really upsets me are the stupid LYRICA commercials! I don't know if others have
commented on them but it makes it sound like ALL we fibro people need to do is
pop one of their pills and we will be ALL better. Unfortunately
their pills don't give a person the energy to be able to function at full
capacity nor do they help with the fibro fog or insomnia of which both I
personally suffer greatly. I can take something for the pain but it is NOT
the PAIN that is basically stealing my life. It is lack of or barely any
energy, major insomnia and fibro fog that is so bad it has become very
embarrassing to me. Like you I was a high achiever and straight
A student who can't remember half of the time, if not more what I did last week
or if I made a phone call or even worse how to get somewhere I have driven for
years! Lyrica advertisements are not only misleading to me but are very
offensive to those of us who suffer from way more that aches and pains. Do
you think we could have a letter with signatures sent to them? - Fibro
sufferer since 1994"
FROM DOM: I have
written a lot about the Lyrica commercials in past newsletters. Search at
www.fms-help.com/newsletters.htm. I think anyone who is
offended by those awful TV commercials might want to email the company.
Here is the contact form for Pfizer, the makers of Lyrica: https://www.pfizer.com/contact/mail_general.jsp. Let them
know what you think. BTW, my internal medicine doc told me that Lyrica is
helpful with shingles pain (which is horrid - having had shingles last
year....my other doc prescribed Lortabs, which barely dulled the pain). I
have used a few capsules of Lyrica when my post-herpetic neuralgia was bad, and
it was helpful. I also took 1 capsule when I had ulnar nerve pain
from practicing and performing a very difficult piano piece, and it relieved th
pain. However, way back when my doc gave me the Lyrica samples and was
urging me to try it, I took it for about 3 days and started to feel really weird
in my head (hide the guns and knives) - so I stopped taking it. If
you see their page on fibromyalgia and Lyrica at http://www.lyrica.com/fibro_homepage.aspx, they say it is not for
everyone. Most readers who tried Lyrica strongly disliked the side
effects. If you would like to share your experience with Lyrica (is
it helpful for FMS or not?), write dombush@bellsouth.net.
22.
SCHIZOPHRENIA
FROM DOM: A popular
and intelligent girl I knew in high school (1968) has recently
written an excellent book about schizophrenia (a brain
disorder), from which she has suffered since age 18 (after having mono). It's
called "Walking Through Walls" by Two Lenz. I wrote a
review at http://www.amazon.com/Walking-Through-Walls-
Overcoming-Barriers/product-reviews/1432718452/ref=dp_top_cm_cr_acr_txt?
ie=UTF8&showViewpoints=1. There's a stigma to having a mental illness just like with
FMS/CFIDS. For some reason it's acceptable if the organ in your body
that's malfunctioning is your liver or kidney, but not your brain! I
look forward to much more understanding of these complicated illnesses as
researchers continue their work. (Regarding the stigma of FMS/CFIDS, see
my letter to Congress www.fms-
help.com/congress.htm.) See #24 below about Orthomolecular
Medicine!
Comment from a reader--
"Schizophrenia is a
metabolic disease, usually caused by low blood sugar-hypoglycemia affects the
hypothalamus. One of many possible symptoms, in some people is schizophrenia. If
you observe schizophrenics (and I've been closely involved with 2 of them), you
will see that they have hypoglycemia and that precipitates the bouts of it.
There are other factors such as high needs for niacin ( a symptom of being
highly evolved-complex nervous system. Study the life of Van Gogh-look at the
pictures). It's not too hard to figure out-you have to read the books by the
great medical nutritionists (all banned but you can get them on Amazon) It's all
in there."
23. CONSUMER LAB TESTS VITAMINS, HERBS,
ETC.
From a reader--
"My Dr. just turned me onto a site
called Consumer Labs www.consumerlab.com. It is just like Consumer Reports but for vitamins and
supplements. It is $30 a year to subscribe but these medical guys test a ton of
vitamins, herbs and supplements. They do not get paid by anyone so their
findings are not biased. It has given me some peace of mind by checking the
supplements that I take to see if they are legit and indeed good for me. I
actually decided to stop some product use after reviewing them and have the
confidence now to choose the healthiest vitamins and supplements for me.
They also don't encourage you to buy one brand or another. The simply put the
vitamins and supplements to the test and present you with the findings so
that as a consumer you can make the best choice for you. Thought I would pass this along because it has
been a helpful tip for me since I am trying to tackle FMS/CFS
naturally."
24.
ORTHOMOLECULAR MEDICINE
From a reader-- (see #22
above about SCHIZOPHRENIA)
"I just ran into an article about Schizophrenia in
a health magazine. It is about a Dr. Abram Hoffer who has written several
books on this subject. Basically his take on it is that people with this
disorder has a metabolic disorder---
"At the time
schizophrenia, a disorder marked by hallucinations and poor social functioning,
was seen as a product of bad mothering. But Hoffer found that people who
suffered from this disorder were unable to clear adrenochrome, a toxic
metabolism byproduct, from their brains, and thought that large doses of vitamin
C and niacin might help. As a result Hoffer helped establish the idea that
mental disease could have biochemical causes, a break through for his
time. He described his work as "orthomolecular medicine."
It goes on to say that just as this was
coming to light, so were all those other drugs for the mental illness so it was
largely ignored. He has 30 books to his credit and also founded the
"Journal of Orthomolecular Medicine." He claims that as he practiced for
over 40 years, he has seen thousands of mental patients
recover using this method, even ones that couldn't be helped by traditional
medicine. I just wanted to let you know because you are
awesome at getting the word out. If there can be something to help these
patients--I am all for it. What a scary way to have to live!!
FROM
DOM: Many chronic schizophrenics are homeless: here's an impressive biography about
Dr. Abram Hoffer - he advocated using megavitamins for schizophrenia.
See http://www.doctoryourself.com/life_hoffer.html. Years ago I read a fascinating book on
orthomolecular nutrition. It had a story about a man seeing a psychiatrist
for "separation anxiety" issues. Every Friday night his wife went to a
club meeting and he sat on the porch. He started having anxiety attacks
when she starting going to this club. But guess what it turned out to be?!
The roses that were growing around their porch were sprayed every Friday,
and his brain was allergic to the chemicals! When they stopped having
their roses sprayed on Fridays, he never had the anxiety again. It had
nothing to do with unresolved issues with his mother or his wife! How many
people are seeing psychiatrists and psychologists when in actuality
their problems are physical - not emotional or
mental??
25. GENERAL ANESTHETIC & M.E. (MYALGIC
ENCEPHALOMYELITIS)
From a reader--
"Any condition linked with the brain is not
accepted in the medical professionals when I was in hospital in November 2009
they all thought I had chronic depression this was their view on M.E., anyway I
was just put to onside and ignored and treated like I was a disease they they
didn't want to catch and all they did was shout over the top of me and they
never listened to me when I told them my legs and brain were in slow mode
because of the effects of general anesthesia after major surgery! It was
the most horrific experience of my life! But God got me out of there and back
home after 3 days for my husband to care for me properly! He intervened and got
me home! I hope more can be done for mental health as well as M.E. - we
don't get the respect we deserve. Thanks for your email on schizophrenia its
also a horrid condition for anyone to live with! (Topic 22
above)."
FROM DOM: Thank God this reader had a caring,
empathetic husband who advocated for her.
26. PCB'S IN
FISH OIL SUPPLEMENTS
Comment from a reader--
"Taking good fish oil is actually
less toxic to us than eating fish!! The fish we eat is certainly not clean
of contaminants or chemicals. I feel like I am doing my body a good
service by taking fish oil."
27. VITAMIN A BLOCKS
VITAMIN D'S EFFECT
28. BABY CRIB
M ATTRESSES
From a reader--
"This lady does a newsletter q&a, kind of like
yours, except she has written a book and I think takes donations so it is more
of a career but still I think she has been there and tries to help chemically
sensitive folks. In any case, this link discusses restrictions on local
farming (which big agribusiness doesn't want but its better for us), and
possible new regulations requiring cribs to use the original mattresses (which
often are toxic) that come with the crib as opposed to being able to substitute
an organic mattress. (An alternative is to cover the baby crib with foil
to prevent outgassing of the mattress chemicals which I did) http://www.qna.debralynndadd.com/node/2355."
29. CELIAC
DISEASE & GLUTEN INTOLERANCE
From a reader--
"The doctor seemed to think I have celiac disease – said the
blood tests were pretty conclusive and generally doctors do not test for
this. I have started on a gluten free diet and I believe it is helping
me. He said this might also help the fibro as well because my body could
not process food correctly before. Also, celiac sometimes comes to the
forefront after surgery – but a lot of times a person has it but just thinks it
is IBS or something you ate on occasion. It may pay to have this
checked. He said it will not cure fibro nor get me off the diet (if it
works) but can sure help. Will let you know how I am doing but some of the
aches are less severe – I am to return to him in 4 weeks. The diet is not
that hard to follow and if this also helps the fibro –
hurray!"
30.
THORACIC OUTLET SYNDROME
From a reader--
"I was finally diagnosed with fibromyalgia last
month and last Thursday with TOS (Thoracic Outlet Syndrome) by a
Vascular Surgeon...due to repetitive job related work conditions. Took me
off work immediately...6 weeks to start, told me to file for workers comp. and
look for a good attorney. He also said, it is going to take at least a
year for me to recover from this injury/condition, he doesn't recommend
surgery says 30% have recurrence with TOS, especially if they keep doing the
same thing, and can occur on the other side. Developed Carpal Tunnel and
Tendonitis with it on the right shoulder and arm."
FROM DOM: I too
was diagnosed with Thoracic Outlet Syndrome very early in my fibro experience
(1982) and also experienced tendinitis in the shoulder and arms. Thank God
I have been pain free for many years now. A list of things I'm using is at
www.fms-help.com/what.htm.
31. CYMBALTA
From a reader--
"The rheumatologist put me on Cymbalta (made
me sick as a dog) dizzy, light headedness, nauseated, and
diarrhea."
32.
ENDOCRINE SYSTEM, CORTISOL & FMS
From a reader--
"I went to an acupuncturist she said fibromyalgia
is due to failings of the Endocrine Systems...hypothalamus, pituitary gland,
thyroid and adrenals. In turn affect the whole body....spine and muscles.
(Nerves and Muscles) Most are not functioning properly either
under/over working . Due too extremely high stress levels for too long
creates a mass production of Cortisol hormones in the body by the Adrenal
glands...it over floods the brain & body-weight gain and wider waist,
brain which effects the Central nervous system of the brain
(Hypothalamus) to keep misfiring sending out pain signals. Which causing pain
throughout the body. Also when it comes to trigger point and she said
it has something to do with Acid build up in the muscles for protection
(when there is an imbalance of the body and it tries to
compensate itself. (My Chiropractor said it's Imbalance due to vertebrae and
muscles, that is when trigger points develop) like tender points
they too cause pain. Now I am only sharing from what I remembered
from that one visit. A lot of it makes sense to me however, maybe not
to everyone. It is so much to learn about this debilitating
condition."
33. WHY
DOES FMS
AFFLICT INTELLIGENT, INDUSTRIOUS PEOPLE?
From a reader--
"You have mentioned several
times "This illness seems to afflict the hardest working and
brightest of our population." You are correct. Before the
illness I could conquer the world in one day and start on tomorrow. I was
sharp minded. I am sharp minded now, but it doesn't seem to come out of my
mouth the way I want it to or I am so slow people don't pay me any
attention. I am still working and trying to push to keep my job. I
have one in college and one who will be in four years. These are supposed
to be the best times of my and my childrens' lives - I ask God to help me fix
things everyday. I do see progress, but it is very slow. My
house use to never have so much as a piece of dust in it. Now, I just have
to let it go to conserve my energy for work the next day. I want to
know why the hardest working and brightest appear to be the ones
afflicted? That is worth looking into."
FROM DOM: For a list of
o ccupations of my readers, see www.fms-help.com/occupations.htm.
Perhaps we put more stress on ourselves than other personality types, thereby
blowing out our nervous systems early in life - or here's a more insidious idea
- FMS/CFS could be caused by an enngineered virus or bacteria in order
to debilitate the intelligent, but not kill them. There was an
article in the Florida Times Union newspaper several years ago with declassified
information that a bacteria was dropped on cities from Alaska to
Florida to see what would happen to population groups as a biowarfare
experiment. Go to www.fms-help.com/mycoplasma.htm and scroll to
the very end to read about this shocking
article.