DOM'S
FMS/CFIDS NEWSLETTER
September 27, 2008
A
compassionate, informative newsletter for people with Fibromyalgia (FMS),
Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), and Myalgic
Encephalomyelitis (ME).
Hello Fibro Friends -
Your eyes are not playing tricks on you! I changed
the font for this issue of the newsletter, hoping it will be easier to read. There are 17 topics
below - don't miss the RED ones! My personal comments are
in TEAL. Everything else is
from my wonderful readers. - Dominie www.fms-help.com
1. READERS WRITE
"Thank you for your excellent
website www.fms-help.com.
You have covered every topic that I have ever heard of in
regard to fibromyalgia, and probably saved me a thousand hours worth of
research."
"I have been reading your
newsletters for ages. I find them very informative and
explain a lot in language I can understand."
"I found your website really
helpful! I'm glad you have found some relief and some
answers!"
"Thank you so much for providing
such a family community. Just knowing that you're there
and I can contact you if I am desperate, makes me feel safe in a
way."
"When I have a flare up I don't want
to even go on. I have so much pain that I can't move. You have
helped show me that there are many, many people like us.
I believe great treatments lay ahead with God's help!"
"Thank you for your incredible
effort for all of us who are connected through
you."
2. LYRICA
Reader 1--
"You know - I have to put my 2 cents
in here - I have been on Lyrica for over a year. Yes it has side effects - but
for those of us who have worked through them, the side effects DO go
away. It's not for everyone, but for some of us it has been a life line. I
think I would be well on my way into a wheelchair without it. And by the
way - I have lost 65 pounds in the last year - all while on
Lyrica."
Reader 2--
"I started Lyrica in January and got
very good results as far as energy and pain management. I also gained some
weight which has always been a very sore point for me. I am very hysterical
about that idea because I used to be about 10 kg heavier than I am now. Anyway,
I put on about 2 kg and decided that I would see what happens if I stop the
Lyrica. I made it for 4 days. By the 4th I was miserable with worse pain than I
had had before starting with it. So on day 5 I slowly started it again. My
DH even said that my whole personality was off balance during the days that I
wasn't taking it, the look on my face became a grimace, and I constantly had
tears in my eyes. Bottom line: as long as I can keep the pudge to a
minimum, I won't give up my relief."
3. MICKEL THERAPY and REVERSE THERAPY
From a reader--
"Regarding David Mickel www.fms-help.com/091708.htm, I have had MIckel therapy and Reverse Therapy.
Neither of them did a thing for me. Whereas the theory sounds very feasible,
the practice of the treatment drove me insane.
I do know people who have improved
with these treatments, but they have CFS not FMS.
I don't know why there would be a
difference, but it might be that the pain interferes rather than the
fatigue.
I have chronic migraines and found
the whole strategy of the treatment really stressful to do with the
pain."
4. CYMBALTA - GOOD
From a reader--
"I have to share with you and the
newsletter readers my personal miracle.
background:
For 14 years (November
1994) I have suffered with fibromyalgia, during the course of the disease
Chronic Fatigue also crept in.
After about a year I was able
to keep the worst symptoms at bay with a 6 day a week exercise regiment.
This meant taking a hot shower to ease stiffness, going to the gym & working
out with a progressively strenuous program put together by an incredible
personal trainer; eventually adding an hour long beach run / walk 5 of the 6
days. This all was against medical advice; but after a year of trying
innumerable treatments - diets, supplements, acupuncture, chiropractic, and
prescription medications, I had to try it. For the next 3 years I
functioned fairly well.
Eventually I was unable to
continue the routine & deteriorated significantly.
In 1999 I started taking
Guaifenesin, this helped quite a bit within a week & I did not
experience the reversal symptoms that are expected with the treatment.
When this medication was changed to an OTC, the benefits disappeared; this
forced me to go outside of insurance benefits & buy directly from the only
pharmacy which I know of that still creates the original medication. While
taking this I have also taken a several other meds to control pain, relieve
muscle tension, allow sleep, create energy; along with supplements etc. etc.
etc. All of this has allowed me to function at about 25% of
"normal".
the miracle:
Six weeks ago I started
taking Cymbalta (20 mg / once a day). Within 3 days I felt GREAT. I
am doing in 1 hour things that were using up a whole day. When I hit
"my wall", if I relax for 30 minutes I am recupperated & get going again;
before - the day was done.
Yes, I still experience pain
& take pain medication - but way less than half as often. I also still
take sleep medication; actually at first I needed to increase from 2mg to 3mg;
but am now back to 2mg.
The first couple weeks I was
sort of manic, I don't know if that was because of the medication, or just that
I was SO EXCITED to feel good again. That has stabilized & I feel
really balanced now.
My digestive system is not
happy & I have to be very conscious of what I eat; but for me the trade-off
is worth EVERY trip to the bathroom.
When Cymbalta was first
prescribed for me I was given 30mg, with the plan to increase to 60mg. I
took 30mg one day & could not stand it; my eyes poured out tears, my nose
ran, my stomach cramped & I had the worse direarah of my life.
I discovered that a 20mg dose was available & after a couple weeks
decided that I would sacrifice one more day to see how that worked for me.
It was the best gamble I have ever taken.
In retrospect the 25%
functioning I had been able to achieve with my old protocal; really was
10%. I know now that this is the real me that has been lost for way too
many years; so long that even I had forgotten what I was & what I am now
again.
I know several readers have
tried Cymbalta & have not had the results I am enjoying; but want to share
my story in case someone else can benefit, especially since my dosage is
unusually low."
5. CYMBALTA - BAD - WITHDRAWAL
From a reader--
"My
wife has been on Cymbalta for many years. She began having heart palpitations,
probably as a result of an incredible increase of stress in our lives, but the
bottom line is that her medical doctor did an EEG and identified in the wave
forms of the palpitations a pattern that was documented in his medical books
(PDR?) as a possible side effect of Cymbalta. So he began taking her off
Cymbalta, but since there is no "tapering regimen" he told her to decrease from
120mg per day by 30mg every three days. I have since learned that it should have
been about a month at each level. In any event, the withdrawal has been truly
terrible, with the two biggest symptoms nausea and what she calls "brain zaps" -
a sensation like there is an electrical shock inside of her brain. These have
been relentless and have just about driven her crazy. Nobody knows exactly what
these are or what to do about them. Wikipedia actually has an entry about all
this: http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome which
includes Cymbalta, even though it's actually an SNRI.
I found a web site http://www.cymbaltawithdrawal.com created because there were so many people going through
this. I highly recommend this site to anyone going off of this terrible
medication. There are two OTC things my wife is using to help her with the
symptoms when they get bad: dimenhydrinate (Dramamine, Gravol, Vertirosan,
generics available) for the nausea, and diphenhydramine (Benedryl,
Dimedrol, Unisom, Nytol, Sominex(US only), generics available) for the
withdrawal symptoms. My research seems to indicate that meclizine (Dramamine II,
Bonine, Antivert, Postafen, generics?) may have fewer side-effects (mostly just
drowsiness) than dimenhydrinate for the nausea. But the generic Benedryl
(look for sleep aids and anti-allergy meds - sometimes one is cheaper than the
other for the same medicine!!) seems to be the most helpful overall. It also has
a sedating effect which helps calm her when the brain zaps get bad. It's been
about a month since she took her last 30mg of Cymbalta and the symptoms are
finally starting to reduce a little bit. Do *NOT* try taking a little Cymbalta
when the symptoms get bad. This set her back a couple of days each time we tried
this, and it was not all that helpful. Some people reported taking a few days of
Prozac helped with this, but my wife is unwilling to put yet another
prescription med in her body. The withdrawal from this drug
is truly horrible. It's almost as bad as heroin."
6. COLD SORES
From a reader--
|
"I take L-Lysine at the first TINGLE and I take 500 mg
at a time all day long for several days....and IF I get the cold sore
without feeling the tingle, doing the same thing shortens it by a
MILE. My grand daugter, who LIVES with blisters on her lips,
started taking L Lysine (she does not get a tingle warning) on a regular
basis and has VERY few breakouts."
I use L-Lysine daily but still
get nasty cold sores from time to time. The best thing I've found is
to take Acyclovir 3 times a day at the first tingle. If any blister
starts to form, I use Releev ($20 for a small bottle from the drugstore)
but it really works to shrink the blister.
|
7. D-RIBOSE (CORVALEN)
Reader 1--
"I
recently started taking d-ribose (Corvalen) and I have not felt this
consistently energetic in forever! I took it 3x/day for the first couple weeks
per Dr. Teitelbaum's recommendations in his book From Fatigued to
Fantastic. Now I take it 2x/day. I know it is working well because if I
forget to take it for a couple days, like when I have a real busy weekend, I
feel it! The best part is that I can get out of bed in the mornings! I actually
wake up feeling rested. I hadn't realized how unrested I felt until I started to
feel the effects of the d-ribose. It is important to take it regularly or, Dr.
Teitelbaum says, you will not get the full effect. That said, it is true that it
may not help everyone, but it is certainly worth trying for at least one full
container."
Reader 2--
"I tried the d-ribose for 2 months
and noticed no change whatsoever.
I am very glad to hear about the reader
that it did help though.
guess it is true what helps one may not help
another."
8. POEM
A Lie for a
Smile!
©
Carrie Nelson, 2008 - from the "Reaching Out"
Newsletter, Sept. 15, 2008 - www.reaching-out.info
"How do I feel
today?
‘I’m okay’ is what I’ll
say.
Why don’t I tell the truth
to you?
Because you don’t really
want to know.
Or even if you do, I don’t
want my pain to show.
If I answered this in
honest words
Icky, aching, awful,
hurting is what would be heard.
But if I said those things,
what good would it do?
Besides, if I say ‘I’m
okay,’ I’ll get a smile from you!"
9. HIPPOCAMPUS (BRAIN) DYSFUNCTION and
FMS
Brain
Dysfunction May Explain Fibromyalgia
Symptoms--
Dysfunction in a portion of the brain may
explain some of the
symptoms of Fibromyalgia syndrome, researchers
suggest in a paper
published in the Journal of Rheumatology Dr. Yasser
Emad, of Cairo
University, Egypt, and colleagues used proton magnetic
resonance
spectroscopy to examine the function of the hippocampus in
15
patients with Fibromyalgia syndrome and in10 healthy women
who
were the same age as the other patients.
The hippocampus is
located deep in the front portion of the brain
involved in regulating
emotions and memory. Functionally, the
hippocampus is part of the
olfactory cortex, which is important to the
sense of smell. The name is
from the Greek hippos (horse) = kampos
(a sea monster), based on its
shape, which resembles a seahorse.
Using spectroscopy, the researchers
calculated levels of hippocampus
levels of the brain chemicals N-acetyl
aspartate (NAA), choline,
creatine, along with their ratios, and compared
the findings between the
two groups. All study participants also
underwent assessments of sleep
patterns, cognitive function, and symptoms
of depression.
In the patient group, language scores were significantly
correlated with
choline and creatine levels, but there was no significant
correlation
between the levels of the metabolites or their ratios and the
number of
tender points.
"The hippocampus was dysfunctional in
patients with Fibromyalgia, as
shown by lower NAA levels," the
investigators conclude.
Because the hippocampus has a critical role in
maintaining cognitive
functions, sleep regulation, and pain perception,
the researchers
suggest that metabolic dysfunction of hippocampus may be
implicated
in the symptoms of this puzzling syndrome.
The number
of tender points on the body was assessed in all patients
and a visual analog
scale was used to measure pain.
Patient age averaged 35.7 years, and
their average disease duration
was 18.1 months. All of the patients had
cognitive functional
impairments on the Mini-Mental State Examination,
eight (35.5 percent)
were depressed according to the Hamilton Depression
Scale,
and nine (60 percent) had sleep disturbances. None of the
control
subjects had any problems in these areas.
"NAA levels of the
right and left hippocampi were lower in the
patients compared to controls,"
Emad's team explains. "Another
statistically significant difference was
observed in choline levels in
the right hippocampus, which were higher in the
patient group." The
Fibromyalgia patients also had significantly lower
NAA to choline and
NAA to creatine ratios compared with the control
subjects.
There were no differences between the groups in other
metabolites
measured or in the choline to creatine ratio.
In the
patient group, language scores were significantly correlated with
choline
and creatine levels, but there was no significant correlation
between the
levels of the metabolites or their ratios and the number
of tender
points.
"The hippocampus was dysfunctional in patients with Fibromyalgia,
as
shown by lower NAA levels," the investigators conclude.
Because
the hippocampus has a critical role in maintaining cognitive
functions,
sleep regulation, and pain perception, the researchers
suggest that
metabolic dysfunction of hippocampus may be implicated
in the symptoms of
this puzzling syndrome."
Source: http://in.reuters.com
(Article from the "Reaching Out"
Fibromyalgia newsletter, Sept. 15, 2008.)
Wow! This might explain why certain therapeutic grade
essential oils with electrical frequencies have
helped me since 2001! They affect the limbic portion
of the brain via the olfactory system, which is tied to the hippocampus.
I hope researchers will continue this intriguing investigation into brain
function and FMS/CFIDS. Regular medical tests seem to always come back
"normal," yet we know our bodies are not functioning normally! My
husband thinks our "computer" (brain) has some kind of an electrical malfunction - maybe due to genetics, stress,
viruses, weather, molds, toxins.....who knows?! Write dombush@bellsouth.net for info about therapeutic
essential oils. Also see www.fms-help.com/oils.htm and www.oil-testimonials.com/6861.
10. "THE AUTOIMMUNE EPIDEMIC"
This book was
called to my attention by a newsletter reader--
"The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of
Balance--and the Cutting-Edge Science that Promises Hope"
11.
NAUSEA and FMS
12. LIFE OF A
FIBROMITE
From a reader--
" I've been suffering with
fibro for about 7-8 years (diagnosed) but I believe I've had it longer. I
seem to go through cyclical periods where it's much worse - and that seems to be
Fall and Spring .... then I'm at my worst (at least this has been a pattern for
the last 4-5 years). The other times, I'm bad but manageable, if I baby
myself. But I am self-supporting and work full time so it's often
difficult having a life 'outside' of work because I just go home and collapse
and start anew the next day."
I can sure relate to not having a
social life. All of my energy goes into survival.
13. JUICES
INTERFERE WITH MED ABSORPTION
From a reader--
14.
CHIROPRACTIC NEUROLOGIST
From a reader--
"I started seeing Dr.
Gail Henry, a chiropractic neurologist in Houston. I found her as a result of
something in your newsletter. After 4 1/2 hours of testing (neurological,
physical, x-ray, urine, blood sugar, etc.) the first day, Dr. Henry began
doing a combination of things that other chiropractors had not done, aimed at
stimulating my cerebellum. (I said,
"Stimulate it to what?" She said, "To work. It's not doing its job." Apparently,
it has to tell your body what chemicals to produce, etc.) She also does
particular manipulations aimed at giving the nerves a clear pathway to take the
messages down your spine, similar to other chiropractors.
At first, I went 3 times per week,
and actually started sleeping after the second visit.
I couldn't believe it! The doctors had tried me on every possible
medication for sleep from antidepressants to muscle relaxers to sleeping pills
to Lyrica for many years. But just after that first week, PMS time came and
that's when my fibro symptoms are worse. I'm also sensitive to fluorescent light
and had been in it all morning teaching. I showed up at the doctor's office
feeling horrible. They always take my blood pressure in both arms. That day,
they took it an extra tme because it was so much higher than usual. Dr. Henry
told me that they wanted to get it down before I left the office. I believe that
day they did oxygen, eye exercises, ultrasound on my shoulders (but that
may have been just to break up calcification), and metronome,
and maybe more I don't remember. She also did some
manipulations. My blood pressure went down and I felt much
better.
I am now down to seeing her once every two
weeks. The elastic brace she gave me to wear on my shoulders (until they
can stay that way themselves) seems to make a big difference. (She said the
sloping forward caused interruption to the nerves. I sleep,
my blood pressure is normal, my weird stabbing pains and random itching seem to
be gone. We're still working on the way my shoulders and neck lock up
when I'm on computer or driving and cause me pain, but she believes we'll fix
that too. She says after 13 years of this, my body needs some healing time.
I'm back to writing and dealing with
normal activities so much better. We just had to drive away from Houston (3
hours) to escape Hurricane Ike, then came back to no electricity (and none
expected) so we drove 6 hours to [another state] and stayed 5 days and drove
back. I still had no electricity and it was humid and 90 degrees. This kind
of travel and stress would have normally KILLED me, but I took my
daughter and her friend out shopping and carried on like a normal
person.
How did I find Dr. Henry: In your
newsletter www.fms-help.com/newsletters.htm, you had a notice about another chiropractic
neurologist (Dr. Michael Johnson) way up north in Wisconsin. Someone
also noted that when they called his office, he recommended a chiro neuro in
their area. I emailed him and he emailed me back personally that he
highly recommended Gail Henry, and that when he had a problem he came
down to Houston to see her. I googled her and found an article about a couple in
Virginia who were bringing their cerebral palsied daughter to Dr. Henry who did
brain stimulation on her and the child, who was not ever going to move her arms
or talk (according to MDs) is now doing both and attending school. Anyway,
I feel like Gail Henry is getting to the root of the
problems instead of drugging me for the various symptoms."
15. WOMEN WITH
FIBROMYALGIA FUNCTION WORSE THAN 80-SOMETHINGS
From a reader--
Wednesday September 24, 2008
"NEWSBRIEF: A new
study shows that women with fibromyalgia (FMS) have less functional ability
than the average woman in her 80s.
* 25% reporting difficulty bathing and taking
care of personal needs
* More than 60% reported difficulty doing light
household tasks (lifting/carrying 10 pounds, going up & down stairs)
* More than 90% reported difficulty doing heavy
household tasks (strenuous activity, lifting/carrying 25 pounds)
Also in the study, women with lower
functional ability had more fatigue, pain, muscle spasms, depression, restless
legs, dizziness and balance problems, fear of falling, and bladder
problems."
Agreed. My
87-year old mother runs circles around me!
16. LIVING
WITH SOMEONE WHO HAS FIBROMYALGIA OR CHRONIC FATIGUE
SYNDROME
From a reader--
Yes! Our
spouses and families need support too for coping with the losses in "quality of
life" that we fibromites face. FMS/CFIDS (and every other chronic
illness) affects the entire family. However, since our illness
is "invisible," it makes it even more difficult for families to understand
and deal with. My dear husband, Donnie www.fms-help.com, has had to adjust his life
expectations greatly because of my FMS/CFIDS! It really isn't fair to him,
but then we vowed when we married to help eachother in both sickness and
health. He knows that if the shoe were on the other foot, I would support
him too. I appreciate my husband's emotional support more than I can say,
and I realize that without his support of me, I certainly wouldn't be able to
support others. May God bless him and all other supportive spouses of people
with FMS/CFIDS! Our loss is their loss too.
17. DOM'S
UPDATE
Thanks
to my wonderful readers, I received a TON of interesting advice about
managing blood pressure. I hope to compile your suggestions into an email,
or post them on my message board at http://health.groups.yahoo.com/group/dominie, or put them on my website at www.fms-help.com. I think my BP med is finally working!
I've
been busy preparing 26 students for a piano recital www.fms-help.com/students.htm in
October. I continue to love my participation in the music ministry at
our church, and I always enjoying correspondence from fellow fibromites!
If you
missed any of my newsletters, visit the archives at www.fms-help.com/newsletters.htm. There are many FASCINATING articles on my homepage at
www.fms-help.com about FMS/CFIDS and brain
function, viruses, how to help others understand what it's like having
FMS/CFIDS, marriage advice, relationship advice, articles about the nervous
system, etc. - new research just keeps flowing in!
Truly sorry that I
can't answer all of my email, but I do read what you send me, and I appreciate
my readers very much! If you need emotional
support, just need to vent about fibro, or want to ask a question
about fibro or CFS, please visit my message board at http://health.groups.yahoo.com/group/dominie.
We have over 370 members who understand the challenges we all face daily.
(You may want to sign up for DAILY DIGEST so that all posts are sent
to you in one email once a day, to avoid tons of email. Or consider WEB ONLY
where you can bookmark my message board and visit as often as you like when you
have time!)
Your fibro
friend,
Dominie
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