DOM'S
NEWSLETTER
September 1,
2007
A compassionate
newsletter for people with Fibromyalgia (FMS), Chronic Fatigue Immune
Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (M.E.)
TOPICS ARE IN
PURPLE. MY COMMENTS ARE IN
TEAL.
Don't miss:
#11 Thyroid Meds Helped "FMS" - hypothyroidism mimics
FMS
#15 Inspirational
- Carol
Kent's gripping story
#16
Fibromites - like this term or suggest a new
one?
#21 Serious Question From a Reader - Sylvia needs
feedback
#23 Dom's Update - feeling well for 3 months
now
1. READERS
WRITE
"I love getting your newsletters, and reading
everything. It makes me feel better knowing that I'm not the only
person that has this. When it all started, everyone would
blow me off when I told them that I hurt. I kept trying to
explain to them that I knew what hurt was, but I didn't understand why I hurt
the way I did all the time. Everyone just let it go in one ear and out the
other. I just wanted to crawl in a hole and die. It
made me feel so bad that no one believed me. But now, everyone does, and
they are interested in things. My younger sister really enjoyed some
things that I sent her from your newsletters."
"I love your newsletter and its always filled with so much
information and positive ideas on how to cope with this
illness."
"Thanks for all you do for us 'mites.' Ha!
Ha!"
"My computer keeps putting your
newsletter in my spam folder............THIS IS NOT
SPAM............I would be SO upset if I missed one of your
letters!!!!!!!!! I try and remember to check my spam
folder..........but DUH...........with this fibro...............ya' never
know!!!!!!! Thank you so, so much for the research and
work that you do."
"I receive a lot of CFIDS/ME/FM
newsletters, but you're the BEST!"
"I have been reading all of your
newsletters, and have been really enjoying them! Thanks
for taking the time to help all of us other fibromites."
"Thank you so much for your
newsletters! They are always packed with so much great
info that my family and I desperately need but don't know what to
ask the doctor about."
"I LOVE your newsletter ...... I
DEPEND upon your newsletter......I ENJOY your
newsletter."
"Yours is the only mailing i will
read about concerning fibromyalgia. Most informative, and i can
read about people who have the same horrible things happening to them and
know that I am not losing my mind."
2. WORK
FROM HOME (revisited)
From a
reader--
"I have a site to add to the work-from-home information. The
url is:
www.nticentral.org It is an organization for
Americans With Disabilities. I can't remember if a referral
from vocational rehabilitation agency to use their services is required or
not. That's how I found out about it. I have a second interview with them coming
up on Wednesday. The job I'm interviewing for is with the IRS. There is no
fee and whatever equipment is needed to work from home is supposed to be paid
for by the Department of Vocational Rehabilitation. They have other
work-from-home opportunities listed on their website."
3. CANADIAN
HEALTH CARE (revisited)
From a reader in
Canada--
"First I should
make it clear to you that each province/territory has it's own extended benefits
plan and this is what covers presecriptions. In British Columbia, this
plan is based on need and I am not covered due to family income. We have
private extended benefits through my husband's employer which also covers,
dental, eyeglasses, hearing aids and assorted things like accupuncture,
chiropractor etc. What is covered federally is doctor appointments,
(referred) appointments with specialists, hospital stays and any and all drugs,
medical supplies used during hospital stays.
Two weeks ago I had a gall bladder
attack. I went to emergency and was given a bed as soon as my
parperwork was filled out. They immediately examined me, took blood
work, set up an IV, and gave me IV painkillers. During the night I
was moved to a quieter area of the hospital. By 9:00 the next
morning I had an ultra sound and x-rays. It turns out my
gallbladder was infected and antibiotics were added to the IV. As soon
as the infection was under control there was urgency to remove it
within 72 hours of the commencement of the attack. I had to wait another day for the infection to settle down, so had
only one day to get it out. surgery was scheduled for 6pm.
Then I bumped somebody and It was changed to 4pm. Then someone bumped
me and it was changed to 10pm. Then I got bumped out of the
ballpark. If you are bumped it means that someone's surgery is more urgent
than yours. If an infected gallbladder can't be removed within the 72
hrs.it seems that there is great danger in removing it before 6 weeks are up, so
they released me to wait at home.
After I got home I have been called in twice
to the surgeon's office for follow up. On the first visit, after examining
me, the surgeon added another 5 days to my antibiotic regimen and two weeks
extra for my surgical wait. This has nothing to do with the medical
system. It relates only to my health. My personal physician has
called twice to see how I am doing. So in the
meantime I wait for my surgery in late September. I am very grateful for
all the wonderful staff at Peace Arch Hospital in Surrey, B.C."
4. SUPPORT LACKING
FOR FIBROMITES
From a
reader--
"I never heard about Fibromyalgia until just a couple of
months ago, and had no idea how many people are suffering from it. And after
having my twin go through breast cancer which is such a highly recognized
disease, that plays on everyone’s heartstrings and has so much support available
it makes me realize how sad it is that the people with Fibromyalgia
don’t have the same kind of support, understanding and compassion of others for
them."
5. GENERIC MEDS
(revisited)
Reader 1--
"I take oxycodone for pain. I usually take the smallest dose
possible just to function when I'm in alot of pain. Sometimes, I can get away
with just taking 1/4 of a pill. I use a pill splitter. It says on the bottle not
to do that but I just ignore it since it works well for me to adjust the dosage
by cutting the pill. I think they just put that lable on the bottle since people
get high by crushing the pills & snorting it. That has nothing to do with
me, though. I was getting a generic pill that was round. One day I got a refill
that was oval shaped & it didn't work. I complained to the drugstore &
they said that the generic pills were all supposed to be the same by law,
etc.... It's really not true, though. I had to go to various pharmacies to find
the round ones & what the actual brand name was. Eventually, most of the
drugstores around where I live stopped carrying the round ones. So, I had to
dish out the extra money to get the real thing. It can be a big waste of money
trying out the pills to see if they work. Also, you never know if you are
getting the right effects if you never take the actual receipe. It's very
confusing since you really can't compare them. I don't have medical insurance so
it can be a big savings to use generics. You just don't know if they are really
working, though. Many drugs are prescriptions so the drug companies can
make extra money. I always thought that drugs were prescriptions so that people
don't get hurt by taking the wrong dosage & so your doctor can monitor your
usage. This is often not the case. I was able to buy aciclovir (Zovirax) for a
cold sore on my mouth over the counter in UK for about $9 for a small tube. The
exact same thing here requires a prescription (so you have to hunt down your
doctor to write a script) & it costs over $90 for small tube. It's best to
treat cold sores right away. This stuff works really well if you use it right
away. By the time I got a hold of my doctor to write a prescription, it was 3
days later & I had a full blown herpes sore. What's the use of that? It's
not like I'm going to over dose on Zovirax. In this case, the doctor makes money
& the drug company makes money. It's not helping people with cold sores at
all. I don't understand why this remedy is not over the counter. If you feel a
cold sore coming on at midnight, you can't just go to the all night
drugstore & buy some. It makes no sense to me. This was also the case with
Claritin. It used to be a prescription only drug. Now, you can buy it anytime
over the counter. Why do they use the prescription status as a way to make extra
money? I though it was originally to protect people from taking potentially
dangerous amounts of drugs. And what about generics? Shouldn't that all be the
same price since the generics are supposed to be identical with the regular
drug? This whole policy makes no sense. Why do they have a cheap drug & an
expensive drug that are supposed to be the same thing? Oh yeah, I want to pay
alot of money for something I can get for 1/2 price... they are supposed to be
the same thing by law, right? Best to think again. Just more confusion."
Reader 2--
"My psychiatrist says that the generic drugs, to be approved,
have to match the branded drug for only a cerain percentage. My pharmacist
says that the generic drugs may not work at the same dosage the branded works.
You may have to take more of the generic. So it may be that the generic would
work but at a higher dosage. For some, the generic can work even better than the
branded depending on the binders, form of the drug (capsule versus tablet,
extended or not). If your doctor can be flexible with the dosages, you might be
able to get the generic to work. It would be just like starting a new
drug and working to find the correct dosage."
Reader 3--
"I've tried every generic when it's been available and have
found that they have absolutely no affect on me. It's as if I've taken a
sugar pill. While the formulation is the same, the binders
that generics use can be grossly different making them metabolized
differently. I now have a standing order at my pharmacy that all
prescriptions are to be filled as written...no generics. Some
insurance companies have forms you can fill out explaining why you need the
brand medication. In turn they will charge you a lower price. I have
yet to fill out the form for Allegra, but I need to. I pay over $100 every time
I get my 3 month prescription for it filled.
6. SOY
(revisited)
"Did you inadvertently leave out the key difference between
typical Western soy products & those ingested by Asians? Fermented
is the huge difference. Miso is one "safe" form available in the
U.S. Most products shoved down our throats are NOT fermented!"
7. HAIR COLORING
(revisited)
From a
reader--
"I have tried and tried (contacted them directly and
other
sites) and have been uneventful in getting Tocco Magico hair
color. It
appears that the only place in my area that sells it is Ace
Beauty and you
can only obtain it if you have a cosmetology license (I
have an expired
temporary one and they don't accept it and I can not
renew it). I have
used this product before and it is wonderful."
8. MANUFACTURED
HOUSING - CHEMICAL SMELL
From a
reader--
"I WOULD LIKE TO KNOW HOW TO GET TO THE PERSON WHO CAN HELP ME
TO SEE ABOUT HAVING MY HOUSE CHECKED FOR ANY CHEMICALS, FORMALDEHYDE OR ANYTHING
ELSE THAT IS ADDING TO MY ILLNESS. I LIVE IN A MANUFACTURED HOME AND I
HAVE GOTTEN MUCH SICKER SINCE WE HAVE LIVED HERE..MY HUSBAND DOES NOT BELIEVE ME
BUT I KNOW DEEP DOWN IN MY SOUL THAT THIS HOUSE IS MAKING ME VERY SICK
AND I NEED THE HELP BADLY."
I sent this
question out to newsletter readers last week. Responses are
posted at www.fms-help.com/mobile.htm. This
question was especially interesting to me because we are in the process of
trying to sell our home and move to a manufactured house (financial reasons and
downsizing). I have lived in a mobile home before, but it was 5 years old,
so the original formaldehyde smell was gone. However, all of the ductwork
had to be replaced due to mold (we live in Florida). I was very sick
(flu-like) until the ducts were replaced. I have noticed that new mobile
homes on the sales lots all have a strong chemical smell to them. Of
course we are looking at them in the summer, when outdoor temperatures are in
the mid-90's and it is extremely humid as well. We were told that this
odor goes away after awhile. If anyone would like to comment about
this, please write dombush@bellsouth.net.
9. READER SAYS
THANKS
From
MaryAnne--
"I want to thank you
for putting my email in your newsletter. I couldn't believe how many
people wrote to me because you did that for me. I was flabbergasted by
all the emails. Although I sent them each an individual thank you, I wish to say
thank you to everyone in the newsletter, if that is ok. I also wish to say
that the newsletter with my letter in it came out on my birthday; August 18th.
It was the best gift I received because IMMEDIATELY readers began to write to
me. This just past week I was diagnosed with Diabetes. The Dr also
diagnosed Chronic Fatigue Syndrome, which he said often accompanies
FibroMyalgia. I start a Diabetes class in 2 weeks, and we hope to control it
with pills rather than shots. All this added together, I don't see how they can
continue to deny me Disability, but as most of you know, disability is very hard
to get when you actually NEED it, and very EASY to get when you don't... So
there is where things are in my life, more illness, more worry. But my husband
and children are doing their best to help me through all this and with the help
of wonderful folks like you I know that I can overcome the obstacles and make it
through."
10. INFECTIONS &
COLDS
From a
reader--
"I use colloidal
silver--wonderful stuff---also use oregano oil for infections, and when I
feel a cold coming to visit me or my diabetic hubby! Its kind of spendy,
but well worth it!"
Colloidal Silver and Oregano Oil
(finest quality) are available in my store. For link, please write dombush@bellsouth.net.
11. THYROID MEDS HELPED "FMS"
Reader 1--
"Just one little blue pill
(Synthroid) and within 4 weeks my symptoms
disappeared....no I don't think it ever was FMS....they call
hypothyroidism "the great imitator" because it mirrors so many
other illnesses. It was just 2 weeks ago that my mother-in-law
exclaimed.....'You are a completely different person than you were a few years
ago....it's just so hard to believe!!!'"
Reader 2--
"We had spoken via e-mail sometime ago
regarding my very long history of a Rheumatologist’s diagnosed case of
fibromyalgia manifested as chronic aches and pains, extreme transient fatigue
and almost constant brain fog of one degree or another. However, I
always suspected hypothyroidism given that I was also always cold, had a
low body temp and very low blood pressure and heart rate. Despite this fact, my
thyroid tests were consistently in the “normal range”.
Many progressive allopathic physicians are
now challenging the laboratory parameters as they are currently set. I found my
doctor, on the BEST THYROID DOCTOR’S Website who are treating patients based on
symptomology and not on lab tests alone. My doctor put me on
Armour thyroid, starting at a low dose and working up.
I started to feel better within a week. Little by little the
dose was increased and by the end of one year, I was on 90 mg and have been so
for one year thus far. This treatment has changed my life. All of my
past symptoms are 95% gone! Once in a while I feel fatigued (for
a few days at most) but that can be for other reasons; fighting an infection off
perhaps. All in all, my life is changed dramatically. Brain fog is
gone……which was a huge concern to me since it was interfering in a big
way with my work. It was so hard to concentrate.
I was also able to start exercising at the
gym! I was able to do this after only a month or two after starting
Armour. Something I could never do before even in small doses since I always
felt that I was walking through sludge. Literally, I had no (ATP) energy on a
cellular level. I used to berate myself for being lazy but it is only now that I
can see that it was truly a biological problem. Now I know what it is like to
really look forward to going to the gym, working out hard, and being ABLE
to do it! It is amazing to me. I am finally NORMAL.
I attribute this change to my treatment
with Armour thyroid which supplies T1, T2, T3 & T 4 since it is a natural
(prescribed) product derived from desiccated pig thyroid. Synthroid by the way
only delivers T 4 and if your body doesn’t convert it adequately to the more
active T3, it will not help the patient. Yet, this is often the standard
treatment and only given if a patient’s tests are off.
By the way, being in
menopause, I am also now stabilized on a compounded
bioidentical preparation of estrogen and progesterone. In order for the thyroid
to work correctly, you need to have the steroid hormones balanced also.
12. VITAMIN D HELPS FIBRO
(revisited)
A reader sent this info from Andrew Weil,
M.D.--
"How do you get enough vitamin D
from foods?
It isn't easy to get enough vitamin D from your diet.
While fortified foods such as milk and cereals are available, most provide
vitamin D2, a form which is much less well utilized by the body than D3. Good
dietary sources include fortified foods, eggs, salmon, tuna, mackerel and
sardines. Since sunlight causes our bodies to make vitamin D, daily exposure is
helpful.
Are there any risks associated with too much vitamin
D?
No adverse effects have been seen with supplemental vitamin D
intakes up to 10,000 IU daily. Exposing the face and hands to roughly 10 minutes
of direct sunlight daily is also quite safe and a good way to boost vitamin D. I
recommend trying to enjoy some time in the sun every day without sunscreen
protection in order to optimize levels of vitamin D, which is made in the body
with exposure to sunlight. Not much time is necessary to raise vitamin D to
appropriately high levels, which are critical for healthy bones and protection
against many forms of cancer and multiple sclerosis."
13. LAB TEST FOR
FIBROMYALGIA
14. DIFFICULTY
SWALLOWING
"I have been treated twice for an
upper respiratory infection in the last few months. The
symptoms lessened but returned when finished with the antibiotics (which gave me
a 7 week yeast infection). I went to an ear nose and throat dr because I still
have symptoms and pain when swallowing. He looked down my throat with a small
hose-like scope and viewed the upper throat. He did not see any blockages or
problems. So he sent me for a barium swallow xray which I had done today I asked
the ENT Dr if the test came back ok what was the next step, he said
steroids.
The Radiologist showed me the xrays and
said he saw no blockages or constrictures or narrowing of the throat. I told him
I thought I had a hernia or ulcer. Even though this test was not for that, he
did say he didn’t see anything in the stomach. He also said since this is a muscle, it could be a problem related
to Fibromyalgia, and that however the fibromyalgia is treated is how this issue
could be addressed. I told him there is no one treatment for fibro, that the
symptoms are treated. I mentioned muscle relaxers to him because other people
with fibro use them for muscle issues. I have used muscle relaxers in the past,
and had bad side effects. I am not sure how to proceed now. So if the ENT prescribes the steroids and if they
don’t work, I don’t know what to do next!
Also not sure if related to this issue as
I have had this problem longer, (about 2 yrs and it comes and goes)is that I
have mouth sores, my gp has prescribed clotrimazole and it
helps sometimes not always. I have a crack in each side of my
lip that burns when I eat mint or spicy things. Can anyone help??????"
15. INSPIRATIONAL
Got this info from a
reader.....WOW....this is great!!!!--
16.
FIBROMITES
Years ago, we were called
"fibromyalgics" or "PWF"s (persons with fibromyalgia). I have recently
seen (and used) the term "fibromite," which is "shorthand" for what's wrong with
us. Does anyone have a term other than this that they would like
to suggest? Write dombush@bellsouth.net. Personally, I am okay with "fibromite"....it is not a
medical term, just a way--between us only!--to describe those who have this
challenge in life. My fibromyalgia story is at www.fms-help.com/fibro.htm. I
was diagnosed in 1982 and suffered for 14 years before the first ray of hope and
help arrived in 1996. Everything was much better for me until 2005 when my
dad died and I worked in a building full of toxic mold. I went into a
sharp decline with my health, becoming barely functional. It has
only been recently (June 5, 2007) that I have felt almost like a normal person
again, due to prayer from my church and some new supplements my husband
suggested. I have now felt like a normal person for the past 3 months
and it has been a wonderful relief! I don't want anyone to think that
I don't take fibromyalgia or those who are afflicted with it very
seriously! I have been writing a newsletter for 11 years now to
support the FMS/CFIDS/M.E. community of sufferers. Here are some comments
I received on the "fibromite" subject--
Reader 1--
"The term fibromite
demeans the amount of suffering we go through."
Reader 2--
"We all suffer but we all must try to make
light of our illness to some degree.
The "mites" part
will only be used among us as a sort of "inside joke
from one FMS
person to another" it is not like we will use it with the
medical
profession. It is a serious condition but lets give us a little break once
in a
while. I guess some just don't have a sense of humor. If we were
terminally ill
with cancer I could totally understand it. However we have a
syndrome
that is shoved under the carpet of the medical profession. Give us
a break
already and let laughter lighten our load for a day or two. God only
knows we need it."
17.
INSOMNIA WORSENED BY INCREASED NIGHTTIME TOILET VISITS
18.
LYRICA
From a reader--
"I tried taking Lyrica for one
month…no change in anything so I’m not taking it any
more."
19. SEROQUEL FOR
SLEEP
From a reader--
"I am working with several doctors due to all the symptoms from Fibro
and I take Seroquel to help regulate my sleep cycle. It was not originally
made for that but since I have been on it, even on most of my worst days I can
go to work and function."
20. VITAMIN D DEFICIENCY
& FIBROMYALGIA
From a reader--
"I am Vitamin D deficient
the worst case my rheumatologist has ever seen. I have to take 50,000
units - 1 pill a week for 3 months then 1 pill per month thereafter and it has
only been a week and I am seeing a difference."
21.
SERIOUS QUESTION FROM A READER
"Dear Dom & my Mite-y Friends...Things have really gotten difficult
here and I have been wondering how many of us share fibro with
other unpleasant conditions? My story is not pretty. it
includes osteoarthritis with multiple surgeries--3 total knee replacements
and so many meds it might be hard to get them all written down. That
moved into RSD which is horrid-- I'm in remission from that--and then I
developed an infection in my spine due to a routine test to look
at my 3 prolapsed disks. I had to have emergency
surgery for that and then 4 months of IV antibiotics that
I had to take almost killed me. Now something really new and
scary is gong on. The Celebrex I have been taking to help
the arthritis pain seems to be the culprit that caused my legs to
swell. Then out of nowhere people started noticing that had
labored breathing. My docs noticed my
blood pressure rising and then they connected the
three symptoms together. They ordered a CT scan of my lungs that
showed fluid was there. All of those symptoms add up to congestive heart
failure. Now l'm scared out of my wits because my blood
pressure keeps rising whle my all over body pain is overwhelming and with
no relief in sight. I take other pain meds--Neurontin Durgesic Patch and
Vicodin for breakthrough pain. Those things can't cover the fibro
flare and the arthritis. Day to day functioning is almost lost for
me. Do you have any thoughts? l'm really
frightened. [Update a few days later: I saw the cardiologist today and
there are more tests coming. He said that the front of my heart is
working slower than the back. He told me not to worry but it is
my heart.] Thanks so much... Sylvia--another complex Mite"
22. GABA &
INSOMNIA
From a reader--
"Another thing I have tried is GABA - you can get it in health food
stores. That works sometimes, google it online as 'GABA and
insomnia'."
23. DOM'S
UPDATE
I'm still feeling well......it's been 3 whole
months now! (I'm getting used to this!!) I'm catching up on so
many things that fell by the wayside during the past 2-1/2 years of
debilitation. It sure feels good to plan my day based on a clock and not
the very iffy "whether I will be feeling up to it."
3 things I started taking on June 5 are still
working great for me. If you want info, write
dombush@bellsouth.net. Check out my newsletters from
June, July and August at www.fms-help.com/newsletters.htm to see my surprising progress - "Dom's
Update" is the last topic in each issue.) I still take a sleep med at bedtime, but everything else is good -
no pain, fatigue or fog. I have
energy and "life" again. People around me can't get over the
change! I think it's because oxygen is getting
to my brain and I also have something to combat stress which
calms my nervous system. It's wonderful to be able to think straight again
and function like a normal person......life is good!
Well, I hope everyone is finding things that help them. I am
so glad we can all be here for eachother through the
newsletter. (We are the Mighty Mites!....remember, this is an inside
joke!!) I think we must all be very strong people to keep
persevering the way we do despite our disability.
I have felt like a guinea pig since
1982 trying so many different things! See my story at www.fms-help.com/fibro.htm.
There is no one drug, supplement or lifestyle change that helps every person who
has this illness. Although we may share identical symptoms, somehow
we are all unique in what helps us. For a list of things I use, see www.fms-help.com/what.htm.
Dominie
P.S. If you're looking for specific information related to FMS, CFIDS or M.E., use the Google search box below. It will search my entire site and newsletter archives.
Acne
Treatment
Alkalizing Drops
Candida Treatment
Cold Sore
Treatment
Essential Oils
Immune Balancing Shake - Innovative BioTech
Product
Oxygenating
Drops
Shingles Treatment
Supplements - Feel the Difference!
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE
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.
