DOM'S
NEWSLETTER
September 18,
2007
A
compassionate informative 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:
#2 SLEEP STUDY COMMENTS
- many responses from
readers
#4 FIBROMYALIGA T-SHIRTS, MUGS, ETC. - huge variety
#12 CRITICAL NEW PIECE OF FIBROMYALGIA
PUZZLE -
brain dysfunction from chronic stress
#19 THYROID & FIBRO - metabolic treatment of
fibromyalgia
#30 DOM'S UPDATE - no fatigue or fog for over 3
months
Also, there are
urgent questions from readers at #6, 15, 24, 25 &
28.
1. READERS
WRITE
"I just feel like giving up at this
time. I think reading your bulletin is the only thing that
pulls me through. No one else understands how we feel
unless they are going through this terrible existence. Thank you for
keeping us in touch."
"Thank you so much for your newsletter.
I have found so many things helpful for
my fibromyalgia."
"I came upon your website www.fms-help.com today and have been
consumed with reading your stories and
articles all afternoon!
"I enjoy getting your
newsletter and don't feel all alone with this
illness. You are doing a great service. It is very much
appreciated!!!!!"
"I sure did enjoy reading the letters from
readers. I feel desperate and they were
comforting."
"I've been reading your newsletters for
over 2 years now and I don't know how I would get by without
them!!"
"I thoroughly
enjoy your site www.fms-help.com - it is like no other.
My heart goes out to each and every one that God will guide them to your site
where they can find help and direction."
"Your newsletter is great! It is so
awesome that you put out this newsletter even when you were so
sick."
"I'd like to thank you for all the time and effort you
devote to the publishing of your most informative
newsletter."
"I am a true FMS Survivor and always
appreciate your newsletters, as they are so packed full of great info
and support. Having been diagnosed with CFS/FMS almost 15 years
ago, I became fully disabled in 2001."
"I really love your website. I am learning
all kinds of things."
2. SLEEP STUDY
COMMENTS
Reader
1--
"In response to the
person’s question on whether they ask you to take your sleep meds during a sleep
study or not….they wanted me to take all of the medications I was currently on
when I did mine. Can you imagine if they wouldn’t allow you to?!
They wouldn’t get much research out of your study because you would probably
never get to sleep! LOL. I assume they would allow this person the
same respect, and quite honestly, seeing as how most of us are on sleep
medications, I would think that refraining from taking them would cause some
false reports to appear. Our medications are “constants” so I would hope
they would want results as accurate to your current state as possible but every
place is different so I can’t offer her any guarantees. I didn’t have any
light shed on my condition either, other than a delayed REM cycle so apparently
although I still wake up tired, they think I slept rather well (I obviously
disagree)."
Reader
2--
"For the reader who is having the sleep study
done. I have had 2 sleep studys since 2001 when I found out I had Fibro. The
first one was done at my local hospital and they tried to tell me I had sleep
apnea. They made me try a C-Pap machine for a few weeks and that was the longest
few weeks I have ever had. I was already sleeping badly, but with the c-pap, I
couldn't sleep at all. The second was in 2004 at
the Sansum Clinic in Santa Barbara, CA. At that time, they said could detect
differences in my Alpha Waves that are common with people with Fibromyalgia. I
never entered the deep, refreshing sleep cycle that everyone needs to wake
feeling refreshed and I had 72 unexplained movements during the night (from
about 9pm to 6am). I was so excited that they had some way of connecting this
with Fibro, that I went back in to see my doctor and he looked at the findings
and then pushed it into my file and that was all that was said about it.
Needless to say....I don't go to that doc anymore! About the meds, if I remember right, they do let you take your meds
if you take any. They want you to be able to sleep during this time. You
may want to ask if they will interfere with being able to tell how well you
really sleep at night. It's also really hard
getting into a comfortable position to go to sleep because you have all these
wires hooked up to your body and head, but I feel it was worth it. At least I
know I'm not the crazy one : ) I hope this helps."
Reader
3--
"I went to a sleep study clinic last
winter. They let me take a free home test to start, which showed I have a
high tendency for sleep apnea. Then, I spent an overnight at the
clinic. I was able to take sleep meds, which amounted to a high
dose of melatonin at that time. Unfortunately, I only slept about 1-2
hours right away and then was wide awake. They could not get a sufficient
test result, so told me to go home. They wanted me to go back and try
again, but I haven't... It was covered by Medicare, and they thought could
be covered again. Right now, I'm taking two Sleep Link, two L-Theanine
(amino acid), and three naturopathic pellets named hypothalmus.
I throw in a little melatonin for good measure. It's working so
far."
Reader
4--
"One of the doctors
at Stanford University told me that sleep aids will
not materially
affect the outcome of a sleep study, so go ahead and
take them if you
need them to sleep. Doctors want patients to SLEEP
during a
study so they can find out what is wrong, not sleeping at a
sleep
study is counter-productive :-) Also, a phenomenon known as
"rebound insomnia" can occur the first night you don't take a sleep
aid after taking it for awhile, you sure don't want THAT for the night
of the sleep study! Please tell your reader she should definitely take
the Ambien (or
whatever she is using) on the eve of the sleep study
unless instructed
by her doctor not to do so. She should also go
to bed very late the
previous night, plus get up very early the next
morning, and take no
naps that day no matter how sleepy. This
will help ensure when she
goes in for the sleep study that evening,
she will be more tired than
usual and more likely to sleep in strange
place with wires and
monitors etc."
Reader
5--
"When I had my sleep study done a couple
years ago, they would not let me take my Ambien. I did not sleep well at all,
but that is what they want to find out -- how your body does on it's own without
any meds to artificially coax it into sleep patterns."
Reader
6--
"In response to the person going for a sleep
study, her question was: Does the clinic want you to not take your
sleep medications during the study? I had to have a sleep study approximately 2
years ago. They were checking me for Narcolepsy/cataplexy and Sleep Apnea. And
to answer the question, no they do not want you to take any medications that may
interfere with a true study. If fact, if you've been on meds for any length of
time, they will want you to stop taking it prior to the study, in order to
get it out of your system. Now, of course, if you are on certain medication's
such as, Wellbutrin or Insulin, these will not disturb the study and may be
taken as prescribed. Your doctor will let you know what you can or cannot take.
And, it only makes sense, if they are trying to monitor your sleep or lack of
sleep pattern through the night. They wouldn't want anything artificial in your
system to mask or alter the study. I have FMS and together
with Narcolepsy, was a double whammy! But now, since I am on medication for
the big "N", as us Narcoleptics call it, I sleep sooo much better.
Thus, has really helped calm my FMS, tremendously. I feel like my
body, through deeper "REM" sleep, has had the chance to heal itself. Praise
God!"
Reader
7--
"In reference to the reader going for the
sleep study, you 'CANNOT' take your sleep meds at all. I've had at least
two of them so I know, ok? I know it stinks, but they need to see how you
do or do not sleep. I was actually told by the last one several years ago
that I do not have fibro and that I did sleep "a couple of hours" and that I
just didn't know that I slept. How's that for a diagnosis?"
Reader
8--
"I went through 2
sleep studies recently. For the first sleep study, I wasn’t sure if I
would be able to take my meds, so I brought them along just in case. When
I arrived for the study, the doctor said that it was optional if I wanted to
take my Lunesta to begin with, but that if I hadn’t fallen asleep within 1 hour
it would no longer be optional- I could take my med or they would give me
something to sleep. They will be able to determine the length of time you
are in each sleep stage, how many times you wake up per hour, if you have any
apnea episodes, etc. There is so much more they can tell too… they’ll hook
you up an ECG to monitor your heart, as well as to an EEG to make sure you’re
not having seizures when you sleep. They determined from the first sleep
study that I needed a second study, which is with a CPAP machine and mask.
The CPAP machine pumps air through the mask to keep your airway open while you
sleep. They will then determine if you require a CPAP machine to sleep at
night. Supposedly, a CPAP machine can be the turning point in the quality
of sleep for someone with fibromyalgia… that is if you can get used to sleeping
with the mask! It’s been a bit of a challenge for me to sleep with the
mask since I’m such a light sleeper to begin with. But it’s worth a
try! Personally, I strongly recommend the sleep study. But, be sure
to take your pillow and anything else you might need to help you fall asleep- I
forgot my sound machine so I had to go home to get it! Fortunately, I was
only 5 minutes from home."
Reader
9--
"The doctor will actually GIVE you sleep meds; he wants to get
you
alseep! It still took me forever to fall asleep (one hour) and
finally I
was off. when I arose the following morning, I filled out the sheet
and
answered tha I had the best night sleep in ages. Well, when I
got to the
doctor's office, he asked me how I thought I had done and i
asnwerd the same.
He said "well, you stopped breathing 15 times.....(I'm
thinking that's a lot
for an entire night) when he completed his sentence PER
HOUR!!!"....and then he told me
he wanted another study so he can fit me with
the proper breathing machine.
He handed me a different sleep medication, and
I asked why. He said it was
stronger because he wanted me to
actually sleep. I told him I thought\
I HAD slept because I awoke
feeling good. He said I had not slept
at all. so go
figure!"
Reader
10--
"I saw in your newsletter where a
reader was asking if you would be taking your usual medications during a sleep
study. I am not sure about her doctor, but
the two studies that I have had, I took my medications just as I would have done
at home. I am getting ready for my third study next month, as I keep pulling off
the mask. The doctor said that I am either not getting enough
air or getting too much. I do not take Ambien, but I do take Xanax.
I wish her
luck."
Reader
11--
"Here are my rambling notes to the person who
is going in for a sleep study. I just had a sleep study & EEG while I
still have insurance. I had ignored my sleep
issues for years - but knew I had a time limit - and having FM & CFS
and more, I figured I'd do it. I can understand the questions the reader
has about the night(S) at the sleep study. The clinic - although near
perfect in many ways, did not send me a do/don't list for the night. I
could have taken my own pillow, a snack if I wanted, and other stuff. I
went thinking I had to be a virgin about my meds. They only ones I really
took at night was a Darvocet to lighten the pain and help me hope to sleep and
my Blood Pressure Med. They did have a 3 ring notebook about sleep info in
the comfy room, so I perused it while I sat from 7pm - 10pm when it was my turn
to get preped. Even then I felt I didn't understand the plan, so I asked
the tech about meds. He said "what I would normally do". Well, the
first night (without CPAP machine), I was timid. I asked for water and
took my Darvocet & Atenolol. The tech really didn't talk to me about
the test. When it was confirmed I had sleep Apnea, I was scheduled for a
second night with the CPAP.
Looking back (a whole month now) : 1) I would have
asked the questions of the clinic...personnel, be sure it's
someone who would know-like in my case, the receptionist was brand new and more
timid than I was...so it would have been to my advantage to ask - I can't
believe I didn't. But nothing lost, really - I had the two meds I needed
with me. 2) I would have done what I could to make myself comfortable -
like my own pillow...extra socks as the room started out cold.
[On the second night, with the CPAP air machine, I took what I needed]. I
wasn't sure I would be allowed to sleep on my side (can't sleep on my
back). I feel silly I didn't do what I would I normally would - ASK before
I went. (Again, the person you will deal with the night of the test(S) is a
likely a technician hooking you up to and monitoring the equipment and probably
isn't the person to ask - my tech may have known and may have answered, but he
was a painfully quiet guy - so ask the DAY staff) I don't know why I
didn't approach the sleep angle earlier....I thought it was midlife, grief,
etc. In fact I wasn't getting AIR!
FAVORITE DISCOVERY from the whole thing: The first night
I slept with the forced air was the first night I woke up the next morning with
NO pressure headache. I didn't wake up with head pain for 10 whole
mornings even though I wasn't sleeping with air during that time.
Impressive - 10 days. I just got the equipment about a week ago...SO,
though I'm learning to adjust to the CPAP (mask & hose)...I'm hoping getting
oxygen to my brain may improve lots of things in my world....hopefully less
'fog' and less pain - who knows!!!
ADVICE:
RESEARCH & READ about masks and machines on the Internet.
Here's where I read other people's reviews and ratings for the face gear (I knew
I didn't want the one I slept in during the test...as I wanted to be able to
have my glasses on my face)
http://www.cpap.com/simple-find-cpap-products/cpap-mask.
My homework paid off, as - I had figured out what I wanted (down to two
options)....A few days later, I got a call from the Sleep Center telling my my
equipment was in...I didn't know they were ordering it - I thought they were
sending a report to my PCP, then they would call me (again - QUESTIONS ARE
GOOD). I was surprised....but went in for the lessons/set up. When
the Dr. at the sleep center was working on the set up and stuff - I said I
didn't want the mask he was pulling out of the box. I explained which
model/type I wanted. He said-we can change...I said I wanted to start with
the kind I wanted and he made it happen so I got to start with the mask I liked
the reviews about.
WATCH LAB & EQUIPMENT VIDEOS - one source (lots more at
vendors and makers sites)
READ
KEEP A SENSE OF HUMOR (laughter is healingful)
This guy cracks me up - kicks in the endorphins (YEA)
BE PATIENT
I'm adjusting but though I want the air, I'm not having the
100% compliance I wanted for myself. I have checked this site and it is
educational and comforting - although I take everything with a grain of salt, as
it's each person's opinion. It helps to know what others are
doing/thinking...like here at DOM's. Hope this helps! Don't be
shy like I was."
Reader
12--
"I had a sleep study done a couple weeks ago
as I too, have had sleep problems since college - I'm now 54. Elavil helps
and I've taken it for 20 years. I took nothing before the study - no
elavil, flexeril, etc. The provider should send instructions
prior to the study, if not, ask them if you should take your regular sleep
medication. It was a horrible night of sleep for me....I felt as though I
was just on the "edge" of sleep all night. I was exhausted the next
day. Diagnosis was that I had a little sleep apnea, nothing
requiring treatment - and restless legs, however, the restless legs did not
wake me up according to the study. So, according to the sleep study,
I had a fairly decent night's sleep - NOT. My Doctor said I was
normal, but that sure didn't seem like normal sleep to me! Of course,
we usually test "normal" on a lot of things while our experience is
different. In spite of this, I think it's a good idea to
have one - it can ease your mind a bit even if there's no measurable sleep
problem."
INCREDIBLE!!!!!!! I know
exactly the kind of NOT SLEEP night this reader is talking about and the
exhaustion the next day - and they say we are sleeping???? NOT!!!
Something is either wrong with the equipment they use to measure brain waves, OR
something else is wrong with our "sleeping" that they can't identify
yet!
Reader 13--
"I have had three sleep studies done , I have to be honest
they are stressful but you will get through it.As far as sleep medications they
don't want you to take them because if you did it would not give a clear picture
of what is going on.I would urge anyone to take the study if you are having
sleep problems, when you see the study you will see the problems you are having.
In many cases a sleep study can save your life because you don't realize your
breathing is stopping during the night."
Reader 14--
"I was recently in a sleep study myself and just found out
that I have sleep hypopnea. Its like sleep apnea, but you don't completely stop
breathing. You basically start breathing really shallow. I guess every time I
had one of those episodes while I was asleep I would wake up or at least nock
myself back into the 1st stage of sleep. I hardly had any REM sleep the whole
night. I am going in for a follow up with the doctor soon and I think they are
going to try a CPAP on me. Its funny because I didn't even think that I had a
real sleep problem. I just thought my sleep was a problem when I was in a lot of
pain. I will let you guys know if the CPAP helps. Oh, they let me take my
sleep meds during the study!!"
Reader 15--
"I am
answering the sleep study test. I have had 3 done, the 1st one was like 7
years ago and they WOULD NOT let you take your meds, the last 2 they TOLD me to
take my meds. Personally for me, I don't think they should let you take your meds
only because you are not getting an accurate reading. Think of your worst
night sleep and how you feel the next day.....that is what needs to be
documented in order to help treat you correctly. I have had "chronic insomnia" for over
10 years now and it was not until the last sleep study that they found I have
"Alpha Wave Intrustions" - I called up my new ( yes yet another specialist ) to
see if they had any idea what that meant and the 1st words out of the doctors
mouth was " You have Fibromyalgia". I about fell over and died. I am
going to see this doctor tomorrow in Richmond Va at MCV.
Oh for those of
you with NO insurance - go to a big big hospital - like MCV or UVA my sleep
studies were free along with the meds that go with it. I hope that
helps. Good luck and wish me luck, too much information is not
enough!"
3. POWER
NAPS
From a
reader--
"Power naps save me each day. I take a 10-15
minute power nap every day when I can. I feel best and get better nights if
I do this each day. If I miss my naps because of a busy day or being away
from home, I find myself back in a cycle of poor sleep. Getting back to my
nap each day puts me back into a decent cycle of night sleeping. A decent night
cycle for me is not sleeping through the night but when I wake up(to
usually use the bathroom) I am able to go back to sleep quickly. It is
also amazing how I have trained my body to only sleep 10-15 minutes. Just told
myself that is all I need and I wake up after only 10 minutes. I also tell
myself that I will fall asleep quickly and I now find myself out as soon as my
head hits the pillow. I do not nap in bed. Now, I often feel that I need more
but found out that if I take more it does not work for night sleeping. The 10-15
minute power nap is probably one of the most important things I do for
myself."
Oh! I am
jealous! I never nap and can't sleep at night without meds. See my
story at www.fms-help.com/insomnia.htm. (This power napping sounds like something my
healthy husband can do, though.)
4.
FIBROMYALGIA T-SHIRTS, MUGS, ETC.
From a
reader--
"Here is the link to a website that I found last week- it has t-shirts,
bumper stickers, mugs, etc. to promote fibromyalgia awareness.
http://www.zazzle.com/pd/find/qs-fibromyalgia I thought your readers might be interested in seeing
the products listed on this website- when my husband and I looked through the
items, he decided he wanted a t-shirt to show his support!"
5. NO
ARMS, NO LEGS, NO WORRIES (revisited)
Reader
1--
"The article about the young man with no
limbs touched me so greatly. What great things we can accomplish with the
help and love of God. The video was amazing. Thank you for sharing
it."
Reader
2--
"Boy, I needed to hear the story on Nick
who was born without limbs. I take so much for granted. God has
enabled this young man to touch people in an amazng way, via his story and
video, across the world. Indescribably amazing!"
6. "GET OVER IT" SAYS FIBROMYALGIA
DOC!
Reader
1--
Reader
2--
"Went there and saw for myself. YUCK!
Wrote a couple of blogs myself! Saw that the doc had actually responded to
a couple of them and just had to put in a word or two from myself.
Yes...this doc is a quack for sure. Let's hope that
they take him off this site!"
From
Dominie--
I wrote to the editor
of Revolution Health about this article. Normally, the Revolution
Health newsletters are full of great information, but this one article is
outrageous!!
6. QUESTION ABOUT
5-HTP & GUAIFENISIN
"Does anyone have comments about 5 htp? I have been
taking for about a month & was getting a little more sleep at first, but
now it seems to be waring off & I have gained a couple of
pounds? I also had been trying the guafennisen 200 mgs a day I
have felt even worse (if that was possible) so I am just wondering what others
think."
7. DISABILITY FOR
DEPRESSION
From a
reader--
"A clue for getting SSDI: list DEPRESSION
first and foremost. You will get it for that before getting it for
Fibro. Here in KS we actually had a doc who was trying to get the state
legislature to make a law stating that Fibro didn't exist! So, it really
depends on where you live as to what you need to do to get those benefits you
justly deserve. And, after all, depression is one of the side effects of
Fibro so it isn't lying."
8. GENERICS
(revisited)
From a
reader--
"While the formulation is the same, the binders for generics
can be grossly different making them metabolized differently. Some
Insurance Co. have forms you can fill out explaining why you need the brand
medication and in turn, will charge you a lower price. For the
pharmacist: You may have to take more of the generic for it to work.
For some, the generic can work better than the brand depending on the binders
and capsule versus tablet. If your doctor can be flexible with the
dosages, you might be able to get the generic to work. It would be like
starting a new drug and working to find the correct dosage. For me, I
couldn't wait around to see if the generic would work at the higher
dose...needed to stay on the brand name so that my symptoms would remain at a
low and the doctor understood this and explained it to the insurance co and his
explanation was accepted."
9. DRUG SIDE
EFFECTS
From a
reader--
Wow! This site is
great. Wonderful reference. I have bookmarked
it!
10. WHIPLASH MAY
RESULT IN DELAYED TMJ
11. SICK BUILDING
SYNDROME
This article hits close to
home. Most of my readers know that I became desperately ill from working
in toxic mold for a year in 2005. I have only recently (June 2007) been
brought back to life by taking some new supplements. However, I still have
a strange chest tightness and cough at times - almost like asthma - especially
when I'm tired. How I wish I'd never been exposed to toxic mold! See
my story at www.fms-help.com/mold.htm.
12. CRITICAL NEW
PIECE OF FIBROMYALGIA PUZZLE FOUND?
by Rich Carson
ImmuneSupport.com (9-10-2007)
Pieces of the Fibromyalgia puzzle
are slowly falling into place, and researchers have been moving toward a unified
theory that explains the etiology and pathogenesis of the disease. While
the conviction among the majority of Fibromyalgia researchers is that
Fibromyalgia represents a significant sensitization of the brain and spinal
cord, some leading researchers have formed a theory that takes the
"Sensitization Theory" a step further, to what can be called the
"Hippocampus Hypothesis" or "Dopamine
Hypothesis." This fascinating theory states that FM is primarily a
brain dysfunction resulting from stress-induced physiological changes to a part
of the brain called the hippocampus and to the important neurotransmitter that
it regulates - dopamine.
Specifically, the hippocampus is extremely
sensitive to stress, and in fact is the brain organ that enables us to
respond to environmental stressors in a way that helps us avoid danger. The best
example of the beneficial stress response is when our ancestors crossed paths
with a saber tooth tiger - an immediate "fight or flight" response was mandatory
to ensure survival.
Studies have shown that
chronic stress, however, can contribute to a disruption of normal
hippocampus function. The hippocampus plays a major role in pain
perception and memory formation, and it is involved in controlling the
production of that crucial brain neurotransmitter, dopamine. Dopamine
abnormalities have been linked to "restless legs syndrome," increased pain, and
feelings of self doubt, anxiety, and problems with memory formation.
If the "Dopamine
Hypothesis" is correct, then it is reasonable to assume that drugs that restore
normal dopamine levels and activity in the brain should have a therapeutic
effect when administered to Fibromyalgia patients.
And this is where the
"Dopamine Hypothesis" picks up steam. Andrew Holman, MD, conducted a controlled,
double blind study of the drug pramipexole with several Fibromyalgia patients.
Pramipexole, sold under the brand name Mirapex, is approved for treatment of
Parkinson's disease - a primary dopamine disorder. Patients experienced
significant improvement in their symptoms. Another drug that affects dopamine
and has been approved by the FDA as a treatment for restless legs syndrome -
ropinirole - also met with remarkable success in another Fibromyalgia study
conducted by Dr. Holman.
All told, the Dopamine
Hypothesis looks promising for several reasons. It ties in nicely to the
pathogenesis of the disease - that the onset of Fibromyalgia frequently occurs
during times of prolonged or intense emotional or physical stress, when the
hippocampus may become overworked and become dysfunctional as a result. And it
ties into the fact that dopamine, which is largely regulated by the hippocampus,
may cause many of the symptoms of Fibromyalgia when its levels are unregulated.
I would like to
acknowledge Patrick B. Wood, MD, and Dr. Holman for their brilliant work with
brain imaging, neurotransmitter physiology, and creative pharmaceutical
approaches to normalizing/regulating dopamine in Fibromyalgia. Their work has
proven beneficial to many Fibromyalgia patients and may hold promise for
treatment of millions more. I applaud their bold, creative, and compassionate
work.
Dr. Wood explains the
Dopamine Hypothesis in easy-to-understand language, using computer generated
graphics and patient and doctor interviews in the acclaimed Fibromyalgia DVD
"Fibromyalgia: Show Me Where It
Hurts."
I've reported on dopamine and
Mirapex in past newsletters - search the archives at www.fms-help.com/newsletters.htm.
If anyone would like to comment, write dombush@bellsouth.net.
Has Mirapex helped you? I can surely relate to chronic stress causing
brain dysfunction. I have been under more than usual stress since I was
born, I think... for many reasons. I still think I'm on to something with
the new supplements I began taking on June 5, because I don't have pain, fatigue
or fog anymore, just the sleep disorder (for 40 years) and the chest tightness
when I'm tired from mold exposure in 2005.
13. MAYO
CLINIC & FIBROMYALGIA
I have heard from several
readers who went to Mayo Clinic for help for fibromyalgia. The bottom line
is that they were not helped. They are told to learn to live with it,
adapt their lifestyle to accomodate it, and take meds. Mayo has patients
who are bedridden with FMS/CFIDS whom they cannot help.
Then today I got an email from a
reader who was contacted by a doctor from Mayo who has fibromyalgia himself and
is thinking about starting a fibro clinic. He said that he went to several
doctors (as a patient) and spent most of his time trying to educate these
doctors on what fibromyalgia was rather than being treated. (Does
this sound familiar???)
14.
SEROQUEL ATTORNEYS
From a
reader--
"I thought I saw Seroquel mentioned in one of your newsletters; it
is now being given to people with Fibro (along with Lyrica) but read the
following - especially the last paragraph and BEWARE!.....
Seroquel (Quetiapine
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dyskinesia.
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the Seroquel attorneys of Ennis & Ennis today for a free confidential case
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15.
BURNING SENSATION
From a reader--
"I am also extremely
sensitive to so much stuff. Bright lights, detergent, cleaning solutions,
pollution, cigarette smoke,loud noises etc. Also, when I take certain herbs
or eat certain foods I have a horrible burning throughout my whole body. I
can't take oil of oregano, Same, olive leaf extract and many other herbs. I am
wondering if any of the other fibromites have horrible burning all over
their bodies when they take certain herbs or eat certain
foods??"
16.
COMFORT
From a reader--
"I have a
Bible verse that keeps reminding me of you and the rest of the
Fibromites and I thought I would send it--
1 Peter
5:10 - After you have suffered a little while, our God, who is full of
kindness through Christ, will give you his eternal glory. He
personally will come and pick you up, and set you fimly in place, and make you
stronger than ever."
17.
M.S. / FIBRO LINK?
From a reader--
"I was just reading -
somewhat skimming - your latest newsletter. Something jumped out at me
like I was hit in the face. The article #21 "Nothing Has Helped"
where a reader wrote about his depilating life with FIbro and CFS, whom I
sympathize with. The sentence: "My mother has MS" is the phrase
that fascinated me. Remember some time ago I wrote asking if anyone
knew of a connection, possibly in our genes, with MS and Fibromyalgia? My
brother has MS and I the Fibro. I have felt for several years that there
may be some genetic connection but don't know where to turn for answers.
It would be good for family members to be aware of this, should it be a
possibility."
18. SUN
HEALTH RESEARCH INSTITUTE
From a reader--
"I spent yesterday at Sun
Health, as part of the fibromyalgia research study/body bank/tissue donation
program (see the article from the Fibromyalgia Network newsletter about
Fibromyalgia Tissue Donation) in which I am one of about 50 "guinea
pigs" (maybe the others wouldn't like that term, but they aren't
writing this), and was told by a Dr. Simo (it may be Dr. Seemo, I don't know;
they didn't write it down for me, or, if they did, I lost the paper), who is
partly retired, and who put me through all kinds of neurological tests along
with my 7th or 8th fibromyalgia trigger point test in the last three or four
years (unfortunately, I do have fibromyalgia, damn it), and she told me that
Dianne Lorton, Ph.D., who was instrumental in developing the program, says from
what they have surmised thus far, fibromyalgia is a problem with the
"innervation" (I don't know what this means, but I assume nerves) of the
body, and that in those of us with fibro, our serotonin is
depleted (so you would think that doctors would prescribe huge amounts
of anti-depressants to restore it, right?) and this depletes our
dopamine. I didn't think to ask her at the time why then doctors don't
prescribe 10 times the dose of anti-depressants to restore the serotonin and/or
dopamine, or just give it to us intravenously, but I am going to write down this
question for the next doctor I see at my next appointment (next week or the week
after).
I did ask Dr. Simo about the "fatigue" (which I consider to be an
inadequate term) I have, and told her that I feel like I have no "life
force", like the cemetery caretaker should be taking me back to the graveyard,
and she said this type of "fatigue/exhaustion" is common in fibro. I
guess I presumed since other people I know with fibro don't seem to feel as dead
as I do that maybe this was exclusive to me alone.
I guess it isn't. I did call one of the nurses I deal with there, Lisa, to
ask her if she could find information out about any of the other people in the
study, what they might do for their fatigue (short of snorting cocaine or using
meth, which, now that I think about it, maybe meth use is on the rise because so
many people are walking around feeling half-dead because they have depleted
their serotonin and dopamine with stress). Stress was something else Dr. Simo
mentioned to me, although I don't remember what exactly she said about it. She
also, like my mother and a couple of other people I know, said that I've just
"gotten a bad hand" or something like that, when it comes to life events
and life stress, etc.
But she said that at Sun Health, they are "hopeful", so that helped,
because it was the first time anyone there indicated that to me. She also
told me that some people do have improvements, and that fibro, like CFS,
can wax and wane, although I discussed with her the three times that I
know for sure (there may have been ones before but they were so mild, I didn't
recognize them as being part of the fibro cycle) where my symptoms waned and
after resting for anywhere from a few weeks to several weeks to a few months to
several months, I stupidly enough thought the doctors were wrong, I didn't have
this fibro/CFS, I had managed to miraculously cure myself and I was going to
return to a "normal" life. So this last time I still have yet to "recover" from
and it's been almost two years. So we talked about the fact that maybe I
pushed too much, and because of this, it might take me longer and
longer to "recover" or I may have made myself so much worse I may never
return.
I guess the point is this: If you start to feel like you're
recovered, don't think, like me, that you're "normal" and go pushing yourself
like everyone in the "real/normal" world does! Even if you start to feel better
and near normal, remember that inside there is something wrong with you, and
rest and don't overdo because you could wind up worse, with new bad symptoms and
old, much worse symptoms, which I have. So that's my
report."
I can sure relate to this reader on many
levels! I am amazed that I have been doing well since June 5, since I
too was like a "dead person" for the 2-1/2 years prior to that. I think
the main thing helping me is getting oxygen to my (formerly) exhausted
brain. I believe we fibromites have had some kind of "brain damage" or
"dysfunction" from continual heavy stress (or perceived stress). I
have been "under the gun" with many unusual trials and problems all of my life -
most of which were beyond my control. Yet there must also be a
genetic component, because many people who have had worse life stresses than me
are not sick (at least not with fibro).
19. THYROID &
FIBRO
From a reader--
"Please click on the section called Introduction to this Book
-
"The Metabolic Treatment oof Fibromyalgia" by Dr. John C.
Lowe at
http://www.mcdowellpublishing.com/aboutbok.htm.
It's worth reading I think! I have had thyroid Issues since age 18 after my
first baby was born...never did think it was right even with medication , and in
1987 I was given a Radio Active Capsule and a Scan that killed my Thyroid...in
1994 it was taken out because there were nodules growing on a dead
gland????????? Hmmmm , but this is what I was told. I take Synthroid everyday
and it does nothing for me and the dose is not correct but my PCP refuses to
change it saying its not going to help me. The only time I felt better and went
to my normal weight was when a Doctor I was seeing put me Armour Thyroid ( the
real stuff ) however he has passed away so I can not return to him and also
checked my TSH every 8 weeks..now I am lucky if they check it every year I have
to beg."
20. OMEGA 3 & FLAX
SEEDS
From a reader with Post Polio
Syndrome--
"I tried fish to increase my Omega 3 but it did not help even a fraction as
much as like flaxseeds have. I have found 1/2 teaspoon of fresh dark brown
flaxseeds to help my nerve connections greatly. I have to grind it in a coffee
grinder and then pour 1/4 cup of water over it. Let it set for 5 minutes and
drink it 3 hours before bedtime or before breakfast. Since it loses its great
Omega 3 value through oxidation and / or heat, it is best to take this
way."
21. "JUNK SLEEP" DAMAGING
TEENAGERS' HEALTH
Too much TV, computers, etc. Kids aren't
getting enough sleep! Technology can hurt us!
22. LACK OF SUNSHINE CAUSES ONE
MILLION DEATHS PER YEAR
Interesting article in light of our discussions
of Vitamin D in recent newsletters!
23. RAW FOOD
DIET
From a reader--
"My relief comes mostly thru prayer and nutrition. When I stray from my
strict raw diet, I start hurting and getting really tired
again. Walking helps too if I don't push too hard. Even when I am feeling
good, I read your newsletter and sympathize and remind myself not to be
indifferent to others' pain; to remember and feel the support for all those
years of nobody understanding why I couldn't do things when I looked so
healthy. I would love to have more energy."
24. DR.
PODELL
"I have most recently located a Dr. that I believe to be an answer to
prayer. I was hoping that you (&/or your newsletter readers) may have
heard of this doctor. He has 2 offices in NJ and FYI his web-site address is
www.drpodell.org. I look forward
to any info you could provide regarding Dr. Podell. You may share my email
address for those wishing to write. - Germaine"
25. SWELLING & LABORED
BREATHING
"I also notice in your newsletters that someone mentioned about
swelling and laboured breathing. Over the past few
months i have had really bad swelling in my feet, that has now risen up my legs
and my face hand and arms seem affected too, everyone keeps commenting on how
swollen i am, i know i've put on alot of leight since having this illness, i
used to be a size 10 (english) and now am a size 16, but i also know that on
certain days i am less swollen and go back down in size to a 12/14, but by the
time i manage to get an appointment with my g.p when im feeling strong enough to
go the swelling seems to get better and then it looks like im exaggerating, as
she doesn't get to see it at its worst, but i have even had to buy shoes 2 sizes
bigger than i am to get my feet into, she has ordered tests for me, but i know
that they will probably show nothing as per usual.
I just wondered if there were more than that one person who has
wrote to you about this kind of swelling, as my husband has also noticed and
commented to the doctor about my new, laboured breathing, but it seems that
it only comes on in spurts, it's not always there, my
real concern is that my uncle who was a diabetic and as far as i know did
not have fibro, died at 39 yrs of age due to a unknown reason for swelling that
began in his feet and then rose up his body he too had to go out and buy clothes
to fit as nothing he owned fitted anymore, just as i have had too, he was given
water tablets by one doctor, but as it got worse, the different doctor
recommended stopping the water tabs and to keep his feet up, within 12 hrs of
this advice he died, after a year of research it was found that the doctors had
been negligent in treating him, the swelling rose, entered his lungs,
and his heart couldn't cope so he had a massive heart attack, there was over 3
pints of fluid on his lungs. So you can see why i feel so scared,
my husband visited my doctor to voice his concerns, as he also heard
another story similar, at the time i was unaware of this and of his concerns,
you see i rarely visit my doctor my husband sees her to get my refills of tabs,
i hate going to the doctor and leaving feeling that i have been told to exercise
and try and be positive and i will feel better and loose the weight, fif i
didn't already feel useless enough she sure made sure i did!!!!!
Anyway i finally gave into my husbands concerns and went to see my g.p,
she assures me she can't hear fluid on my lungs (as they told
my uncle) and that the fluid swelling is probably down to me being unable to
exercise regularly, but on my good days i do exercise, i cannot under
any amount of will power make myself exercise on a bad day, as i can't
even manage to hold a cup, go to the loo alone, get dressed, and just sit there
like a zombie, i know that you are more than aware of these symptoms, and i
suppose i just need to talk to someone that understands. She has ordered a
chest xray to be on the safe side, but that look was, just get up and
get on with it. My consultant that i see is so much more
understanding, and never makes me feel this way but the appointments are so far
apart like nearly 3/4 months so its difficult to see him when you need to.
Please can you tell me if anyone else is suffering these new symptoms of mine?
is it just another symptom of fms or is it something else that my g.p is
missing? Me and my hubby are terrified. - Trudy"
Wow. I'm not a doc, but my first thought
was that this reader has symptoms of congestive heart failure
http://www.hmc.psu.edu/healthinfo/c/chf.htm. My second thought was that Dr. Paul Cheney's theory about
the heart malfunctioning and fibro is something she could look into. I
have reported on this in past newsletters www.fms-help.com/newsletters.htm. Type Cheney in the SEARCH box. Once you are on the
page you want, hit ALT-F and then type Cheney in the FIND box. It will
take you directly to the place on the page where Dr. Cheney is mentioned on my
site.
26. THE LONELY
DISEASE
From a reader--
"For a long time I was 'all alone.' Now, I'm meeting more
and more people who know someone who has fibromyalgia. I've been able to explain
to them more about it and how to help their friend or loved one cope, and the
sooner the better. It took me a long time to make any progress. If only
I had had someone who could have helped me. So now I help them. Thank
you for what you are doing!!!"
I can sure relate to this reader's
comments. See my candid interview with Bella Online at
www.fms-help.com/interview.htm about my experience of developing fibromyalgia in
1982. There was no support and no information back then. I got
the internet in 1996 and what a blessing it has been!!!
27. DOING TOO
MUCH
From a reader--
"Had to give up my corporate position in 1994 and have struggled to have
some good days. We gave a "House Warming Party" Saturday night down.
I worked so hard to prepare and then had to miss church yesterday because
of the aching and fatigued body, along with a pounding headache. I know
better but continue to do too much for others. I don't think I'll ever
learn to say "no", at least when I have a day of feeling almost
normal. One seems to forget this will put them
down."
Yes, we fibromites love to give!
It's so unfortunate that our bodies will not permit us to do more good in this
world! Just think of all we could accomplish without this huge
hindrance! Well, God knows our hearts and the sacrifices and suffering we
endure just to do normal things. And she is so right about saying yes on a
good day, then paying for it on a bad day....ha.
28. READER NEEDS
ENCOURAGEMENT
"I am getting sicker every day...I am so tired that I can hardly keep my
eyes open..I do not drive anymore because I am scared of getting into an
accident..I feel as though I could have a brain tumor and also be anemic:
but my husband does not help me and I am to the point in my life where I want to
get away from this awful life of mine..I am tired from the time I get up until I
go to bed..I am so weak and my legs are like rubber..I also have neuropathy and
I am on so many pills that I have been wanting to go to some form of clinic,
which they do not have here in Tucson where I can get off the pain meds and get
my mind clear..I sometimes do not even remember my name or what I am doing...I
have blue cross plan but they only have help for someone who has depression, of
which I do and very bad panic and anxiety attacks..I have been back and forth to
so many doctors but all they give me is pain pills and sometimes shots in
trigger points..I have nothing to live for anymore and what few friends I did
have have long gone away...I always would go to yard sales or out to the store
and now I spend the days crying..I have a thyroid condition but for some reason
they are not doing much to help me to get it right...I guess you feel that
I want the easy way out..I guess I do because I am not living and life is for me
to live and to enjoy my grandchildren, instead of falling all over the
place, I know that you have never given up but you seem much stonger than I
am..If it is okay I could write to a few people on your list if they want to
talk with me. - Barb"
29. DARK CHOCOLATE FOR CFS &
FMS
From a reader--
Chocolate for CFS and Fibromyalgia - By Jacob Teitelbaum,
MD
Scientists have discovered that dark chocolate helps to prevent chronic
illnesses. Myalgic encephalomyelitis (ME), which many feel is part of the CFS
and Fibromyalgia complex of illnesses, leaves sufferers exhausted and with
neurological problems. People taking part in a study at Hull Royal Infirmary
found they felt better after eating specially-formulated dark chocolate every
day for eight weeks. But chocaholics will have to search around – only chocolate
made with 85% cocoa was found to have health benefits. Professor Steve
Atkin said: “No one has examined the effects of chocolate on ME before, so this
is a very exciting result for us. Participants took 45g of special chocolate
high in polyphenol chemicals for eight weeks. They then had a two-week rest
before taking a placebo chocolate, low in polyphenols, for the same time. After
the first period they felt less fatigue and once they moved to a placebo
chocolate they began feeling more tired again. They did not experience any
significant weight gain either. Polyphenols can reduce the risk of heart
disease, cancer, and strokes. Chocolate also increases serotonin and
phenyl ethylamine (PEA), which regulates mood.
Is it just me or does chocolate cause your face
to break out? (I am 55......sigh!)
30. DOM'S
UPDATE
I continue to do well with no pain, fatigue or fog since June 5, 2007 when I
began some new products my husband suggested. A
list of things I use is at www.fms-help.com/what.htm.
Write dombush@bellsouth.net if you
want more info. I have heard from several readers who are also trying
these and doing great! I've actually been ENJOYING life again! I
float around the kitchen with ease making meals - maybe you remember my
laborious accounts of my dinner preparations from previous newsletters.
My fibro fog was so bad that I could barely put together a simple
meal! Now I can do it effortlessly!
Hurray!!!
In more good news, the School of Music where I
teach is off to a great start this fall with many eager and enthusiastic
students www.fms-help.com/students.htm.
We are part of a program sponsored by Roland Corporation, who has loaned us
a brand new state-of-the art digital piano (KR-107) for our use this
semester. It does everything but wash the windows! Ha! I've
noticed that the kids are so much more at ease with technology than I am at age
55. My students will be participating in Piano Jam (that's a fun
name for "recital") at Keyboard Connection in Jacksonville in
November. I continue to
serve as a church pianist playing for worship services, choir rehearsal, praise
band, and occasionally a funeral. I am glad the Lord has allowed me
to use my musical talents to encourage others spiritually. I occasionally
get to sing at church also - I don't have the greatest voice, but I am
sincere...ha! You can hear me sing and play the keyboard
at www.fms-help.com/servant.wma and
www.fms-help.com/welcome.wma.
I'm doing lots better with hot
flashes due to a new feminine balance
product and also changing
soaps...yes, soaps!!!! I found that some soaps and body
washes leave a film on your skin which prevents pores from
breathing. My body heats up like a furnace and I sweat profusely,
even when people's teeth are chattering from the air conditioning being set so
low in my classroom. (I have been accused of operating a meat
locker....ha!!!) Living in hot, humid Florida in the summertime doesn't
help the sweating problem! The only 2 soaps I will use now for showering
are Basic H or Miracle II. Everything else leaves me sweating like
crazy!
In more good news, I drove over to see my
mother a few days ago - she is 86 and lives 51 miles away (via a couple of
interstates). My long-time readers will be in awe of
this great "feat," knowing what a debilitated wreck I have been for many
years! I couldn't travel more than 15-25 miles without
collapse. Now it's easy! (For my new readers who wonder what
this is all about, see Dom's Updates in my back issues at www.fms-help.com/newsletters.htm.)
I don't know what I would have done without my
wonderful newsletter readers who encouraged and advised me in so many
ways. I have learned so much from you! I hope to keep this newsletter going as long as the Lord gives me
the ability to do so!
"He careth for you" (I
Peter 5:7)....and so do I!
Love to all of my Mitey
Friends,
Dominie
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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.
