Volume 1, Issue 7
Fibro Friends Forever
Butterflies are symbols of metamorphosis. Fibromyalgia gives us the opportunity to
change, grow and become stronger.
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 : B I O F E E D B A C K
Last issue we discussed Hypnosis Therapy as
an alternative therapy for pain management.
Please let me know if you had any questions
regarding that article.
This month I had been considering doing an
article regarding Biofeedback. I wasn’t com-
mitted to it because it wasn’t something I was
too familiar with. Well, after further re-
search, I have decided to go ahead and do the
article on Biofeedback. Wow!!! What inter-
esting and potentially helpful information.
If you have fibromyalgia syndrome, I am
sure you are sick and tired of the chronic
pain, morning stiffness, and other symptoms
that you are suffering from. Biofeedback
therapy might be just the treatment you need
to help relieve your discomfort. Biofeedback
operates on the theory that you can reduce
your fibromyalgia symptoms by influencing
your body through your own willpower.
(Would that be “mind over matter”? Let’s
see how Biofeedback works.)
A S S O C I A T E D
Fibromyalgia has often been called the
"great imitator" because so many of its
symptoms mimic those of other disor-
ders. As a result, it can often be difficult
to receive a proper diagnosis of FM.
However, there are subtle differences
between many of the illnesses and FMS.
Learning more about each of these disor-
ders can help you figure out just how
fibromyalgia is distinct from them. Mak-
ing a list to compare the differences is
helpful. (Or you could email me)
Common disorders that FM is often mis-
taken for include
 Lyme Disease; Lupus; Osteoarthritis;
Rheumatoid arthritis; Cushing’s Syndrome;
Hypothyroidism; Cervical spinal steonosis
Biofeedback therapy uses a machine to
record electric impulses emitted by your
body, in the form of temperature, muscle
twitches, and brainwaves. The biofeedback
machine then "feeds back" these impulses to
you in the form of lights and beeps, which
are displayed on a biofeedback monitor. For
example, when your temperature increases,
the number of beeps that you hear also in-
creases. The object of the therapy is for you
to find a way to reduce the number of lights
and beeps that are fed back to you. This will
relax your body’s electrical impulses and
reduce your symptoms. With training, you
can eventually apply this knowledge with-
out the use of a machine. (This makes me
think of the monitor used during labor. You
know the one that registers contractions. I
could watch it rise and fall. I used it to help
me with how I dealt with each contraction.
It worked great for me.)
Biofeedback therapy was designed to treat a
variety of illnesses including chronic pain
disorders, paralysis, and fatigue. It has also
proven helpful in relieving some types of
psychological illnesses, such as obsessive-
compulsive disorder. Biofeedback has also
C O N D I T I O N S
People with fibromyalgia are also
at greater risk of developing a
number of other disorders, many of
which can exacerbate your current
fibromyalgia symptoms keeping
you in that vicious cycle I spoke of
before. These disorders and con-
ditions may be (but not limited, by
any means, to):
 IBS; Osteoporosis; Endome-
triosis; Carpal Tunnel Syn-
drome; Sjogren’s Syndrome;
Crohn’s Disease; MS; CFS;
Anemia; Seasonal Affective
Disorder (SAD); Yeast Infec-
tions: Hypoglycemia and more.
November/December, 2008
proven to be helpful in reducing various
symptoms of fibromyalgia. (Ok, How???)
Biofeedback works by training you to
better recognize your body’s own reac-
tions to stress. When you are exposed to
stress, emotional or physical, your body
responds in various ways. Your heart beat
may increase, your joints may hurt, or your
hands might feel cold. By showing you,
through beeps and lights, how your body is
feeling or reacting, biofeedback helps you
to become more attuned to your body’s
needs. (Hmmm, I know that I am hurting. It
would sure be nice to know why and what
triggers specific aches and pains)
Biofeedback also works by using rewards
to get you to correct disturbances in your
body. During the therapy you are
"rewarded" for reducing your stress in the
form of a reduction of beeps and lights.
When practiced enough, your body will
eventually automatically correct itself.
There are a number of different types of
biofeedback therapy. They are often used
together in order to achieve the best effect.
Continued on Page 2
O F F M
Fibromyalgia can also affect the way
your body functions. FMS impacts
the Cardiovascular System and the
Nervous System.
Please remember that these are not
the limit of conditions that FM can be
associated to. If you have any ques-
tions about any of these, or need
help researching/understanding,
please let me know. I am always
here to help.
V o l u m e 1 , I s s u e 7 P a g e
C o m m u n i c a t i n g
Are you communicating with
your doc? Yes you say? Ok, are
you communicating honestly with
your doc? Yeah, that’s what I thought.
Well, with some of you that is. I bet that
over half of you are not being honest with
Mr./Ms. Doc. I am going to give you ten
reasons why you’re not being completely
honest. The reason I know this? They are
the same reasons I’m not being completely
honest with my doc. Here is what you are
thinking:
1. The doc won’t listen or truly care.
2. The doc will say “your just de-
pressed”
3. The doc doesn’t believe in FM
4. The doc doesn’t believe YOU
5. The doc will think you’re a hypo-
chondriac
6. The doc won’t think your symptoms
are important
7. The doc will think you just want
drugs
8. You have too many symptoms that
you think the doc won’t want to deal
with them all
9. The doc will be judgmental
10. You are embarrassed of all your
symptoms
These are all legitimate reasons. This is
because some docs have failed us or others
in the past.
Biofeedback
Continued
EMG biofeedback is the most
common type of biofeedback
therapy and is especially useful
for fibromyalgia patients. It is used to
correct muscle pain and stiffness. A bio-
feedback device called electromyograph
measures electricity given off by your
muscles. (I had an EMG on my arms and
it told the Doc that I had mild Carpal
Tunnel Syndrome in both arms)
Peripheral Skin Temperature (PST), this
type of biofeedback measures electrical
impulses given off by the flow of your
blood. This provides information about
your skin temperature, which can be used
to fight persistent cold or Raynaud’s phe-
nomenon.
EDR monitors electricity produced by
your sweating reflexes, and is also known
as sweating biofeedback. It is used to
correct anxiety and depression.
EEG biofeedback measures the type of
waves that your brain produces. It is help-
ful in correcting all sorts of ailments,
ranging from depression to sleep disor-
ders.
w i t h
We can do something about making com-
munication with our own docs better.
Here are a few things we can do:
1. Educate ourselves about our own
illnesses. I have said it before and I
will say it again. We are responsible
for our own health education and
how we are taken care of,
2. Prep for your appt. We all know how
the docs like to overbook. They give
us what, 10 minutes? Even though
we see them all the time, they don’t
remember anything about us. Bring
your list of meds, your list of recent
symptoms, what you discussed last,
your progress and your questions.
3. When you speak, be specific with
details, don’t whine, but don’t be
arrogant either. Even though we may
know more about our condition than
the doc does, he is the one taking
care of us. (Side point: just because
they are the doc doesn’t mean we
have to accept inadequate care. We
are paying them for a service. Get
what you pay for. I have said it be-
fore, they work for you.)
Regarding Educating ourselves. I really
think it is so important to do as much as
possible to learn about our health issues.
If you are doing research on the internet,
please make sure it is a reliable source.
Getting information through a chat room is
not a reliable source. Going to the library
is good. I have purchased some good
books from bookstores and from the Ar-
thritis Foundation. You all know that I am
always willing to do research for you. Just
forward me your questions. If you want a
good reading list, let me know that too.
Breathing biofeedback gives you infor-
mation about your pulse rate and how
fast you are breathing. It is used to help
correct anxiety and fatigue.
Biofeedback has proven to be very ef-
fective in reducing symptoms of fi-
bromyalgia syndrome. It helps to: in-
crease physical functions; decrease ten-
der points; minimize pain; decrease
disordered sleep patterns. In one recent
study, fibromyalgia patients who at-
tended 15 biofeedback sessions experi-
enced a decrease in their number of
tender points, as well as improvements
in their muscle stiffness and pain symp-
toms. These benefits lasted for up to six
months.
If you are interested in trying biofeed-
back therapy, there are a number of
resources that you can turn to. Biofeed-
back is normally practiced by licensed
professionals, and is commonly used by
psychologists, psychiatrists, neurolo-
gists, and physical therapists. Your doc/
health care provider should be able to
refer you to a reliable practitioner.
2
t h e D o c
Now in regard to point number
2. It frustrates me when I see
my doc and I have discussed an
important issue with him and
the next time I talk to him he
can’t remember a dang thing. I
have learned that it is important
for me to write down what we
discussed, how things have
progressed, and any questions I had. After
all, like I am going to remember?????
LOL!!! In the email I am attaching a little
something I created a while back to help
me with my doctor visits. I have emailed
it to some of you already, usually as you
become part of my “little” family I email it
out.
Now for point number 3. When you are
trying to explain, let’s say a pain in your
foot, don’t just tell the doc your foot hurts.
Be specific. Tell the doc that after being
on your feet for 10-15 minutes your foot
gets a pounding pain in your heel. As for
your tone, we all know how to tune out the
kids when they start to whine. What
makes you think the doc isn’t going to
tune us out? As for being arrogant, what is
that saying, we attract more flies with
honey. Need I say more?
I know it is hard to respect someone who
isn’t respecting us. So, if this is what is
happening between you and the doc, guess
what? Time to switch docs.
Next month let’s discuss
how you know when it’s
time to get a new doc.
In love and health. Jodie
FAMILY & FRIENDS PLEDGE TO CARE:
 ALWAYS STAND BESIDE LOVED ONES
with Fibromyalgia and support the patients
quest for a better quality of life.
 ACT AS AN ADVOCATE to insure that loved
ones receive the best possible medical care.
 BE RESPECTFUL OF LOVED ONES
PHYSICAL LIMITATIONS and help, or get
help, when it is needed.
 EDUCATE OTHERS about FM and encour-
age them to provide people with FM support
and understanding.
 ADVOCATE for improved treatments, ex-
panded research and increased awareness and
acceptance of FM.
 UNCONDITIONALLY LOVE the people in
my life who have FM.
V o l u m e 1 , I s s u e 7 P a g e 3

W h a t ’ s N e w I n t h e N e w s ?
A n d o t h e r a n n o u n c e m e n t s

I have attached to the email an article Fibromyalgia AWARE Magazine is now

I found called “Why Exercise Will Help being sold in over 6,200 CVS Stores
Your Fibromyalgia”. I enjoyed the arti- Nationwide. Go check it out in the
cle and it’s simplicity. feature section.

I did the radio interview. It was quick

& basic. I wish I had to opportunity to Happy Thanksgiving
say more, another time perhaps. Here
is the link: www.kvpr.org/shows/ &
quality_of_life.php#recent-shows.
Copy and paste it into your browser. Merry Christmas!!!
Choose the show for the 25th . If you
have any problems let me know.

Check with your insurance company

about alternative therapies. If they
don’t cover them, they might have
discounts for them.

All material in this newsletter is provided

For links to back issues of this for information only and may not be con-
newsletter, you can find them in strued as medical advice or instruction.
No action or inaction should be taken
my blogs on www.myspace.com/ based solely on the contents of this
fibrofriendsforever. newsletter. Instead readers should con-
sult their physician or other qualified
health professionals on any matter relat-
Nov 3, 2008—A new brain scan study ing to their health and well-being. Read-
concludes that fibromyalgia is related ers who fail to consult with appropriate
to abnormalities of blood flow in the health authorities assume the risk of any
injuries. The publisher is not responsible
brain. See the email attachment for errors or omissions.
“Fibromyalgia a”

Fibromyalgia and Sex

(not for sensitive eyes)
& no blushing
Ok my dear fi-
bromites; it’s time for “the talk”.
Yes, THAT talk. If you have
FM, you may also be having
problems with your sex life or
relationships. You could be
experiencing loss of libido (did
I just say Libido?) or having
difficulty with sexual perform-
ance. It's also possible your
libido (is sexual desire better?)
is healthy, but the deep mus-
cle pain and stiffness of fi-
bromyalgia may keep you from
enjoying sex the way you used
to. Below is some information
I researched regarding the
issue, and I am going to speak
openly.
A healthy sex life is important
for many reasons. Not only
does sex strengthen an inti-
mate relationship, but sexual
intercourse boosts endorphins.
Endorphins make us happy. So,
what causes the loss of sexual
desire with fibromyalgia? Some of
the medications, such as the SSRI
antidepressants can cause a loss
of desire.
Also, for some, if it isn’t enough
that we have gained a ton of
weight due to the drugs and are
feeling a bit insecure, we have to
deal with the constant pain, fa-
tigue, anxiety and depression that
the FM itself causes.
Well, if it hurts all over, then how
the heck can a fibromite have
sex? Some fibromyalgia patients
give up all together. That just isn’t
the answer. It is still possible to
have an intimate relationship. You
just need to work with your partner
to find the most comfortable posi-
Fibromyalgia &
Your Relationship
tion during sexual intercourse. For
instance, if you have fibromyalgia
with low back pain, you may find
that having your partner on top or
lying on his or her side is most
comfortable for you. Or, if you're a
woman who has fibromyalgia and
hip pain, you might use a pillow
between your knees to stabilize
your body during sexual inter-
course. (Check out
www.liberator.com for positioning
pillows )
Just because you've "always had
sex one way," does not mean
that's the only way. You need to
be patient, take it slowly, and find
the best sexual positions that
allow you to be intimate without
causing further pain. The trial ‘n’
error phase could be fun. Keep in
mind, there is no right or wrong
way to be intimate with your part-
ner. You may just find lots and
lots of different and fun ways to
have sex.
There are some ways to minimize
your pain prior to sex as well. Try
taking a hot shower or soaking in
a warm bath. (You can do this with
your mate for intimate, quality
time) You can also try some light
stretching or some yoga. (or have
your mate help you with some
stretching) Doing these things
after sex help with the pain too. (I
should teach classes...LOL)
One of the most important things
is to talk to your doctor/healthcare
provider. Sometimes they may
help with medical treatment. Ya’
never know.
FibroHugs to you all...Jodie
 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
1003 N. Maritza Pl. become stronger. Our goal is to make every-
Porterville, CA 93257
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.

F r o m “ yo u ”
You asked and you shall receive. A few of you asked for some information specifically regarding Chronic Fatigue Syndrome. Here is
part 2.
S y m p t o m s
Chronic fatigue syndrome is a flu-like condition that can drain your energy and, sometimes, last for years. People previously
healthy and full of energy may experience a variety of signs and symptoms.
People with chronic fatigue syndrome exhibit signs and symptoms similar to those of most common viral infections. Unlike flu
(influenza) symptoms, which usually subside in a few days or weeks, the signs and symptoms of CFS can last much longer.
They may come and go frequently with no identifiable pattern.
Primary signs and symptoms
In addition to persistent fatigue, not caused by other known medical conditions, chronic fatigue syndrome has eight possible
primary signs and symptoms. Chronic fatigue syndrome symptoms include:
Loss of memory or concentration
Sore throat
Painful and mildly enlarged lymph nodes in your neck or armpits
Unexplained muscle soreness
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Sleep disturbance
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
According to the International Chronic Fatigue Syndrome Study Group — a group of scientists, researchers and doctors brought
together by the Centers for Disease Control and Prevention (CDC) to determine a standard method for defining and diagnosing
chronic fatigue syndrome — a person meets the diagnostic criteria of chronic fatigue syndrome when unexplained persistent
fatigue occurs for six months or more along with at least four of the eight primary signs and symptoms.
Additional signs and symptoms
In addition, people with chronic fatigue syndrome have reported other various signs and symptoms that aren't part of the official
definition. These include:
Abdominal pain
Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
Bloating
Chest pain
Chronic cough
Diarrhea
Dizziness, balance problems or fainting
Dry mouth
Earache
Irregular heartbeat
Jaw pain
Morning stiffness
Nausea
Chills and night sweats
Psychological problems, such as depression, irritability, anxiety disorders and panic
attacks
Shortness of breath
Tingling sensations
Visual disturbances, such as blurring, sensitivity to light, eye pain and dry eyes
Weight loss or gain
If you have chronic fatigue syndrome, your symptoms may peak and become stable early on, and then come and go over time.
Some people go on to recover completely, while others grow progressively worse.