Volume 1, Issue 3 May, 2008

Fibro Friends Forever

P A I N M A N A G E M E N T S U P P O R T S E R V I C E S

A l t e r n a t i v e T h e r a p i e s f o r
P a i n m a n a g e m e n t
T h i s m o n t h : A c u p u n c t u r e
a c u p r e s s u r e
Last month we discussed heat
therapy as an alternative ther-
apy for pain management.
Butterflies are Please let me know if you had
any questions regarding that
article.
symbols of
This month let’s go with acu-
metamorphosis. puncture & acupressure. Per-
sonally I have not yet used
this type of therapy yet. But
after researching about it, I
Fibromyalgia learned that its popularity is
on the rise, and that its results
are more often than not quite
gives us the beneficial.
opportunity to Let’s look at each of these
separately. Acupuncture,
change, grow although sounds a bit scary,
has been around for centuries.
and become It is an ancient Chinese ther-
apy that is used in a variety of
health problems, including
stronger. chronic pain. Thin, metallic
needles (approx. 1-10cm
long) are placed in specific
areas of the skin. These areas
are called Acupoints. Each
&
acupoint corresponds to the
area in which a person is hav-
ing health problems. The
needles are placed/pierced
into the skin for up to 20 min-
utes. The idea is to bring
’balance’ to the body and
restore the healthy function of
whatever area is unhealthy.
Acupressure has the same
concept of acupuncture ex-
cept needles are not used.
Pressure is placed on a spe-
cific area of the body by
hands, fingers, thumb, el-
bows, palms, etc. from an-
other person for anywhere
from 3-10 seconds.
Both of these therapies can be
used in treating the symptoms
of Fibromyalgia that we ex-
perience:
 Headaches/migraines
 Muscle/joint pain
 Fatigue
 IBS
It seems that by performing
acupuncture and acupressure
that it actually blocks pain
impulses from getting to the
brain. It increases the levels
of endorphins, serotonin, en-
domorophin-1, beta-
endorphin, and encephalin.
These are all chemicals that
help to reduce the symptoms
of pain. Well, I for one have
two major symptoms with
this FM. The pain and the
fatigue. So, what about the
fatigue?
Upon further research, I read
that the Mayo Clinic did a
study. They specifically stud-
ied the effects of acupuncture
on fibromyalgia patients.
They found that symptoms
were reduced and that the
biggest improvement was in
fatigue levels. Although this
is just one study, I, for one,
am willing to give it a try.
Have you tried it? Did it
work? Please let me know.
Shoot me an email. Share
your experience.
In the next Alternative Care
Article: Craniosacral Therapy

U n d e r s t a n d i n g
HOW DID I GET THIS?!? There is no known cause
of fibromyalgia. YET! Although researchers have a
number of different possibilities. Here are a few:
One: Emotional Stress/Trauma. It has been thought
that severe emotional stress or trauma could be the
onset of fibromyalgia. This isn’t a proven cause of
FM. I know that one of my biggest triggers though,
is stress. Whenever I get upset or overly stressed,
my symptoms tend to worsen and flare.
Two: Infection. Although not yet discovered, there
have been some researchers that thought infections
or past infection may have caused FM. Again, not
proven.
Three: A third possible cause that I found in my
reading was a theory that FM was some how related
to hypothyroidism.
Four: There are possibly genetic factors involved.
f i b r o m y a l g i a : ? C a u s e s ?
Most of what we are is because of the genes and not felt guilty about being tired. Maybe, just
we are born with. maybe I wouldn’t be as bad as I am now. Tak-
ing care of a family, working full time, tending to
Five: Most of what I have read in recent stud- 3 kids, 2 step kids, and at the time a husband
ies has experts agreeing FM is a central nerv- that, well, lets just say it was not working out. I
ous system disorder. did not allow myself down time. Being tired or
sick was not acceptable.
Fibromyalgia can come on suddenly or appear
gradually. In most, it may be triggered by the Did I push my body into this? Did I get some
onset of an illness or injury and may have sort of infection that led to this? Is it in my
brought about already existing issues that we genes? Did my mom have this? What else do I
hadn’t noticed before. have that could be causing all of this? Is it a
disease medical science hasn’t even really
For me, I look back and think about the way discovered yet? What chemicals are we made
things were a year or so before my diagnosis. of that are not working right in my brain, in my
I look at some of my day to day living, events, nervous system? Ahhhhhhhh…..ok I am done.
things I was going through, and I firmly believe No, we are not going crazy. Sure feels like it
that I was going through this in a milder degree sometimes, but we aren't’...I promise. If we
than I am now. Maybe if I would have taken keep doing what we are doing, demanding
care of myself then, allowed myself even just answers to our questions, I bet we will know
the slightest thought of “maybe you are sick” more sooner than we thought. We are not
alone...so grateful for that….fibrohugs to you!!!
V o l u m e 1 , I s s u e 3 P a g e
Time management tips
How many good hours in a day do
you have? If you are a chronic pain
sufferer, you know what I am talk-
ing about.
When I am in remission, I probably
have around 4-5 good hours a day.
When I am in a flare, which is most
of the time, I have 0-3 good hours
each day. We have so much to do
in such a little amount of time. The
average person (Normal's) has 8-16
hours per day to accomplish what
they need to and sometimes that
isn’t even enough. So how does a
fibromite do it? Good time manage-
ment!
Fibromites have to manage their
time differently than the Normal's
do.
Coming
Soon:
Meds vs. Natural
Life Style Changes
Hypnotherapy
FM Diet
Stress Management
FMS vs. CFS
Deep Sleep as a Pain Reliever
Do you wake up in the morning still
feeling tired? If you do, chances
are you may have an unidentified
sleep disorder. Recent studies re-
veal that more than 80% of fi-
bromyalgia patients have a real,
detectable sleep disorder. Re-
searchers are re-examining how
lack of restful sleep causes more
pain. Below is a summary of their
findings I found in an article from
the Fibromyalgia Network.
(www.fmnetnews.com)
“Bernd Kundermann, Ph.D., of Ger-
many, studies the relationship be-
tween disturbed sleep and enhanced
pain. He says, “The pain-relieving
action of the body’s natural opioid
system relies upon undisturbed sleep
(e.g., sleep continuity) ... this points to
a detrimental effect of sleep disrup-
tion on the ability of the opioid system
to provide pain relief.” Therefore, one
needs to correct the disturbances that
The first thing I had to do was learn
how to say “NO”! And not only to
say “no”, but to say it without the
GUILT. It is much harder to say
“no” without the guilt. (but it is
healthier).
Next I had to learn to live one day at
a time. I learned that planning cer-
tain things in advance just isn’t real-
istic for those with fibromyalgia.
We just don’t know what each day
is going to bring us. Will it be a
good day or a bad day? Will I be
able to drive? Get out of bed? Or
even get out of the house?
Day timers, Palm Pilots, Note Pads,
Post-Its...whatever it is, use it.
Write it down! FibroFog WILL
kick in when you don’t want it too.
Here are some lists that I make:
Errands list, cleaning list, shopping
lists, and my delegating list. This
last one is my favorite. The kids
don’t like it, but oh well, I do.
Prioritize your list. You never know
when you will run out of steam and
at least you will have gotten the
interfere with the sleep processes.
Sometimes, it may not be easy to
detect these disturbances. For ex-
ample, Martha Lentz, Ph.D., R.N.,
of Seattle, WA, took healthy, middle-
aged women and deprived them of
the deepest level of sleep, com-
monly referred to as slow wave
sleep (SWS).
The subjects were allowed to sleep
all night long, but every time they
began to enter SWS, a loud buzzer
aroused them to a lighter level of
sleep (but did not wake them up).
On the surface, their sleep efficiency
(which is measured as the percent of
time spent sleeping) remained the
same, but their quality of sleep was
horrible. By the third night of SWS
disruption, the women developed
muscular aching and their pressure
pain threshold was lowered (i.e.,
their tenderness to applied pressure
was enhanced).
What happens after depriving a per-
son of SWS for three nights?
2
most important things done.
I also plan my errands in a certain
order to make a circle through town.
Dorky I know, but it works for me.
I am flexible if something doesn’t
work out, or I need to just go home,
so make sure you are too. Then, I
just redo my list for the next day.
Regarding the cleaning list. Have
you ever heard of Flylady.net? This
is a great website for helping to
manage and keep organized our
homes. It starts you off with very
simple baby steps. This website is
very helpful in regard to being able
to spend just a few minutes at a time
working around the house. You will
love it. I also use it to help me to
delegate, so of course my boys
would like to squash Flylady, but I
love her.
So just a few, brief tips to manage
the few (good) hours each day that
we have to get accomplished what
we need to.
Just remember, don’t put too much
pressure or stress on yourself if you
can’t finish what you want in the
time you have. You will give your-
self ammunition for a flare and
make the next day worse. Don’t
worry...Be happy! It will all get
done.
FibroHugs...Jodie
S. Hakki Onen, M.D., Ph.D., used
Lentz’s technique to prevent his
healthy subjects from entering SWS,
and then he allowed them to sleep
through the night undisturbed (the
recovery night). He found that SWS
was substantially increased on the
recovery night, along with the sub-
ject’s pressure pain thresholds. In
fact, the increase in SWS produced
greater pain relief than one would
receive from a large dose of ibupro-
fen!
People with fibromyalgia have lower-
than-normal pressure pain thresh-
olds, but the study above indicates
that increasing SWS will raise this
threshold and lead to less pain.”
For some reason that I am un-
aware of, I do not get good sleep.
I have gone 3 nights without Am-
bien. All I want tonight is a good
nights sleep. Hello Ambien.
Sleep tight y’all…Jodie
V o l u m e 1 , I s s u e 3 P a g e 3

Y o u a r e n o t a l o n e ! ! !

It is so IRONIC. Those of us with
FM are always feeling alone and
misunderstood. Yet there are
more than 6-9 million people in
the U.S. suffering along with us.
Isn’t that crazy? It is because of
WHAT we suffer from. FM is mis-
understood, not us personally.
Every chance I get I talk to people
about FM and other pain disor-
ders. Every conversation leads to
‘this or that’ person having or
knowing someone with FM.
So, then, why is it we feel so alone
when there are so many out
there? Why is it so hard for others
(the norm’s) to relate to us? Why
can’t we get our friends and family
to understand or accept that we
truly are suffering even though we
look fine? (FM: The Invisible Dis-
ease)
One of our new Fibro Friends got
me to thinking about this.
(Welcome Leah) I hadn’t thought
about it quite in this way, until she
and I were talking one evening.
How many of us have lost a part of
the relationships we have with
those who do not understand FM?
The majority of us have. It can be
depressing and cause quite a bit
of anxiety. Two symptoms I can do
without.
NOW lets turn this around. YOU September. It is something to look
ARE NOT ALONE! We have all forward to. I am planning it out
gone through this in one way or with a couple other people. The
another. All Fibromites suffer from other email outreach projects will
the “Why don’t they understand come over the summer. Look for
me?” Syndrome. Ya know what? more emails and a new website.
You now have a new family. The We are also going to plan an event
Fibromite Community is yours. We for next years Awareness Day.
instantly accept you. Once you are May 12, 2009. Watch your news-
diagnosed with FM, and I mean at letters for information.
the very moment you are diag- So, are you still feeling alone? I
nosed, you are accepted. All you sure hope not. But, if you are go-
have to do is let us know who you ing through a rough patch, you
are. This very group, FibroFriends- have my email address and my
Forever, accepts you whole heart- phone number. I can even put you
edly. We accept you, understand in contact with another group
you, and are here for you. member if you like.
I have some good news for you.
We are going to be making some Remember: You are never alone.
changes with our group. We will
continue with the newsletters. We {{{ YOU }}}
will be adding on to our email out-
reach. We will also be starting a
local monthly support group and
those of you out of town will still
be able to “attend”. How? Well
we are going to work it so that
there are a couple options. One
will be to call in and it will be like a
conference call so you can partici-
pate in the meeting. The other will
be via the computer with an in-
stant message service. The local
support group won’t start until

Massage Improves Sleep, Decreases Pain & Body Care

Substance P in Fibromyalgia Patients
After receiving massage twice
weekly for five weeks, fi-
bromyalgia patients experi-
enced improved mood and
sleep, and their levels of sub-
stance P, a neurotransmitter in
the pain fiber system, de-
creased, along with the num-
ber of tender spots throughout
their bodies, according to re-
cent research. The study,
"Fibromyalgia Pain and Sub-
stance P Decrease and Sleep
Improves After Massage Ther-
apy," was conducted by Tif-
fany Field, Ph.D., Miguel
Diego, Christy Cullen, Maria
Hernandez-Reif, Ph.D., Wil-
liam Sunshine and Steven
Douglas of the Touch Re-
search Institute at the Univer-
sity of Miami. According to the
American College of Rheuma-
tology, fibromyalgia is defined
as "widespread chronic mus-
culoskeletal pain of unknown
cause and multiple tender
points." Levels of substance P are
significantly higher in people with
fibromyalgia. Twenty-four adults
with this condition were randomly
assigned to either a massage-
therapy or relaxation group. Sub-
jects in the massage group re-
ceived 30-minute massages twice
a week for five weeks. The ses-
sions combined several types of
bodywork, such as Swedish mas-
sage, shiatsu and Trager® work.
The routine consisted of moderate
pressure and stroking of the head,
neck, shoulders, back, arms,
hands, legs and feet. Participants
in the relaxation-therapy group
met for a half-hour twice weekly
for five weeks and were given
instructions on progressive muscle
relaxation while lying quietly on
the massage table. The State Trait
Anxiety Inventory was used before
and after sessions on the first and
last days of the study to measure
how subjects felt at that time. Both
the massage and the relaxation
Corner
group showed a decrease in anxi- substance P. According to the
ety and depressed mood immedi- study's authors, these findings
ately after sessions on the first "highlight the clinical significance
and last days of this study. More of using massage therapy as a
long-term effects were also evalu- complementary treatment." -
ated. The Center for Epidemiologi- Source: Touch Research Insti-
cal Studies Depression Scale was tute. Authors: Tiffany Field, Ph.D.,
used to measure depressive Miguel Diego, Christy Cullen,
symptoms. Subjects wore a mo- Maria Hernandez-Reif, Ph.D.,
tion recorder at night to record William Sunshine and Steven
activity during sleep and kept a log Douglas. Originally published in
of the time they went to bed and the Journal of Clinical Rheumatol-
awoke. A physician assessed ogy, April 2002, Vol. 8, No. 2, pp.
participants' illness, medication 72-76.
use, tender points and pain; and
saliva samples were taken before
the first and last sessions to
measure levels of substance P.
The results revealed that, over the
course of the study, the massage
group, as compared with the re-
laxation group, experienced de-
creased depression; improved
sleep; decreased pain, fatigue and
stiffness; improved physician as-
sessments; decreased tender
points; and a reduced level of
 Fibro Friends Forever has been created for
P A I N M A N A G E M E N T Fibromyalgia and Pain Management Aware-
S U P P O R T
ness. Its mission is to help those with FM &
chronic pain disorders to change, grow and
PO Box 1082 become stronger. Our goal is to make every-
Porterville, CA 93258
one aware of the issues that face those with
Phone: 559-756-0894 fibromyalgia (chronic pain) on a daily basis.
E-mail: fibrofriendsforever@yahoo.com
myspace URL: myspace.com/fibrofriendsforever
Education is the key to our health. Along with
informational services, we provide email sup-
port group services. Soon to include a
change, grow and become strong monthly, interactive support group meeting.

R i s k fa c t o r s f o r f m

What makes one person more sus-
ceptible to FM than another? Wait,
let me rephrase that question...WHY
ME?!?
Well, lets look at the risk factors
here. First of all, statistics show that
there are 6-9 million people in the
US suffering with FM. Why the 3
million spread you ask. Well, here
is my theory. I believe there is such
a huge spread because there are so
many people who start out seeking
medical treatment for all the symp-
toms that they are suffering from,
but because of the frustration from
ignorant, unsympathetic doctors and
the lack of support these people re-
ceive from their own family, they
give up. They are told that they are
fine. After all, “the tests say they
are fine”. So, that is my theory of
the large gap in numbers. Ok, lets
move on.
Out of all these FM sufferers, 9 out
of 10 of them are women. Being a
woman is a risk factor. Women are
more prone to develop FM during
menopause, but studies suggest that
that the majority of cases have their
onset between the ages of 20 and 50.
So, being a middle-aged woman is
even more of a risk factor.
There is some research that shows
women closely related to a FM suf-
ferer are more likely to develop FM
themselves. This indicates a genetic
defect that predisposes some people
from the beginning.
The next risk factors indicated are
sleep disorders and stress. Some
researchers say that sleep disorders
are the root of FM. Studies have
suggested that chronic stress plays a
strong role in the development of FM.
I see a vicious cycle here. Stress leads
to sleep disorders which leads to poor
sleep, which in turn leads to being
vulnerable to stress. For me when I
have gone through high stress, or I
have gotten really upset, this triggers
me into a flare-up. Are you a middle-
aged woman with high stress that
doesn’t sleep at night??? LOL!!! Ok,
I just had to put that out there...I mean
really…?!?!
What about other chronic pain condi-
tions? Rheumatoid Arthritis, Lupus,
Ankylosing Spondylitis, Chronic Fa-
tigue, Gulf War Syndrome, and the list
goes on. These all increase the risk of
developing FMS. (Fibromyalgia Syn-
drome)
Do any of these risk factors make any
sense to you? These may or may not
be risk factors that pertain to your
developing FM and there isn’t much
we can do to even change these risk
factors if they did pertain to us. One
thing we can do is make a conscious
effort to manage what we can. If
stress is going to cause a flare, then
work effectively to change what is
causing the stress, or to change how
you are reacting to the stress. Learn to
manage your health, manage your
triggers, manage your life. Don’t
worry, I know it is easier said then
done. That is why I am here. To help
where I possibly can. Even if it is just
to send out this newsletter. A big part
of this management is being part of a
community and that, my Fibro Friend,
you are already doing. So, as I run out
of space, I would love to hear from
you. Shoot me an email. Send me
your story, a moment, something to
vent or share.
Q&A
Q - Have you heard of
using Ribose in treating some FM
symptoms?
A - I have recently done some dig-
ging around about Ribose. What I
have found so far is that it is used to
boost energy and relieve some of
the achiness that FM patients suffer
from. I know that supplemental Ri-
bose is used by some athletes to
help with their recovery time after
intense exercise. It relieves the
fatigue, soreness and stiffness that is
experienced. If you are considering
trying it, just check with your doc,
and do some further reading.
Thanks for the question.
Email your questions to:
fibrofriendsforever@yahoo.com
All material in this newsletter is provided for
information only and may not be construed
as medical advice or instruction. No action
or inaction should be taken based solely on
the contents of this newsletter. Instead
readers should consult their physician or
other qualified health professionals on any
matter relating to their health and well-
being. Readers who fail to consult with
appropriate health authorities assume the
risk of any injuries. The publisher is not
responsible for errors or omissions.
In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases
(CIND) by Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neuro-
logical Diseases), to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the
International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of
her life virtually bedridden. Despite her illness, she managed to found the world’s first School of Nursing.

The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recogni-
tion of fibromyalgia each May 12. The NFA collaborates with fibromyalgia support groups and patient advocates around the world
to coordinate innovative national and international events in honor of Awareness Day. Awareness Day activities are designed to
increase awareness of chronic pain illnesses including fibromyalgia, as well as to assist patients and organizations in educating
the general public, healthcare professionals, government officials, and legislative bodies.

Each May 12 the NFA encourages the FM community to approach their local and state government officials to request a procla-
mation declaring May 12 International Fibromyalgia Awareness Day. To simplify the process, the NFA provides a proclamation
template that is easy to customize.

Additionally, the NFA creates an annual campaign and provides materials to assist support group leaders and advocates in coor-
dinating their own local events. Over the years, participation in Awareness Day events has increased and gained momentum
through grassroots efforts of support group and patient advocates around the world. Here’s a look back at our most recent cam-
paigns:

2007 National Fibromyalgia Awareness Day Campaign: Fibromyalgia in Focus

The NFA and Trillusion Media, makers of the groundbreaking documentary film “Living with Fibromyalgia,” partnered to coordi-
nate screenings of the film across the country. The NFA created Awareness Day packets for support group leaders and advo-
cates, including a DVD of the film, movie flyers, postcard invitations, press release templates, and a guide to coordinating their
own Focus on Fibromyalgia event. The campaign was extremely successful, with 135 packets purchased from groups in 40
states as well as in Canada, England, and India. As a result, the film was shown in big-screen theaters, homes, community cen-
ters, hospitals, and university facilities, taking FM awareness to a whole new level.

2006 National Fibromyalgia Awareness Day Campaign: “But You Don’t Look Sick!” The Invisible Pain of Fibromyalgia

To highlight one of the main challenges faced by people with fibromyalgia—the difficulty in convincing family, friends, employers,
and even physicians that they are indeed sick—the NFA designed a poster of actual FM patients that illustrates how healthy sick
people can appear to be. We also asked advocates around the world to share their stories with local media. This resulted in nu-
merous newspaper articles and radio interviews spotlighting the actual experiences of FM patients.

2005 National Fibromyalgia Awareness Day Campaign: Be Aware! Be Active!

The “Be Aware! Be Active!” campaign sought to raise awareness of the physically debilitating effects of fibromyalgia while pro-
moting the benefits of moderate, gradual physical activity for people with FM and other chronic pain conditions. The NFA part-
nered with YMCAs and Curves sites across the country to hold special events to educate FM patients and the community on the
benefits of exercise. The campaign also supported and highlighted the advocacy efforts of fibromyalgia and other chronic pain
illness support groups nationwide. The NFA commissioned the design of a special cranberry-colored wristband to commemorate
the campaign; everyone purchasing a wristband was asked to pledge to be aware and be active.

2004 National Fibromyalgia Awareness Day Campaign: Appetite for Awareness

As part of the “Appetite for Awareness” program, local fibromyalgia groups hosted awareness events at restaurants in their com-
munity. The restaurants provided space for the groups to set up information tables, and also donated a percentage of the day's
proceeds to the local group and the NFA. Families and friends dined together and shared information and support for people with
fibromyalgia.