Volume 2, Issue 1
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 : N e u r o f e e d b a c k
Similar to biofeedback, which we discussed
last time, Neurofeedback (NF), or EEG bio-
feedback, helps reduce your fibromyalgia
symptoms by changing your brainwave pat-
terns. Helpful for treating many symptoms of
fibromyalgia, ranging from depression to
chronic pain, NF can help eliminate discom-
fort due to fibromyalgia. Wouldn’t eliminat-
ing our discomfort be wonderful?!?
NF is an easy and pain-free form of fi-
bromyalgia treatment, it allows a person to
"learn" a new way of creating brainwaves. By
altering brainwaves, the negative fibromyal-
gia symptoms associated with old brainwave
patterns disappear. The main goal of this
therapy is to give a person the conscious
control to alter their brainwaves.
During a NF training session, electrodes are
placed on the scalp and ears. The precise
M e d i c a l
Just as there are many, many fibromyalgia
symptoms, there are just as many treatments.
Treatment for fibromyalgia is very comprehen-
sive and usually involves more than one health
care provider. This could include: Your family
doc, An Internal Medicine doc, a Neurologist, a
Rheumatologist, a chiropractor, occupational
therapist, physiotherapist, etc. Currently I am
using my Family Doc and a Neurologist.
With all types of treatments, the goal is to mini-
mize our symptoms and improve our general
health. Brain mapping is one diagnostic proce-
dure that can help to better identify certain
discomforts. This can help us to receive appro-
priate treatments. Furthermore, since the
symptoms of fibromyalgia come and go and
change, treatment is an ongoing process rather
than management of a single episode.
locations for these electrodes will be deter-
mined by the NF practitioner. Once in place,
the electrodes will send a signal to a com-
puter, which then translates these signals to
reflect brainwave activity. The therapist will
be able to see brainwave patterns on one
screen while for the patient, the feedback
will be relayed through video, sound, or
vibration.
There are many different disorders and ail-
ments that NF has been shown to be useful
for. The most widely researched is ADD/
ADHD, although its use in treating those
suffering from seizures, teeth grinding, and
cerebral palsy, among other things, has also
been examined. The role NF has in treating
fibromyalgia has also been lightly studied
with positive results. NF has also been
found helpful for treating a number of
T r e a t m e n t s f o r
With the help of our health care provid-
ers, we should be able to come up with a
unique treatment plan that addresses
our own particular needs. Our treat-
ment plans should continually change as
our condition changes. Since individual
manifestations of fibromyalgia vary
from patient to patient, so do most suc-
cessful forms of treatment. Finding a
health care provider that provides us
with our own proper treatment is essen-
tial. Hopefully the tips you read in my
newsletters will help you find the right
doc and help you to build a healthy rela-
tionship with him/her. My hope with
publishing these newsletters is to help
you to work with your doc in finding the
best treatments for your individual case.
What works for one patient may not
work for another. While one person may
January/February 2009
symptoms of fibromyalgia, including:
Depression, Anxiety, Chronic Pain, Sleep
disorders, Managing stress, Chronic head-
aches & Short term memory loss.
NF is used for Chronic Fatigue as well,
although this area has not been as thor-
oughly researched.
NF is often done in a clinical setting. Al-
though the initial appointment may run as
long as two hours, the therapist will need
to review medical and family history,
meetings thereafter will likely last between
40 minutes and an hour. Just how often
one will need to go for a "training session"
will depend on the issues patients are seek-
ing help for as well as the results hoped
for. Anywhere from one to five times a
week may be normal. On average, most
people notice a change in condition within
the first 10 classes,
Continued on Page 4
F M
prefer a specific type of treatment, like
massage therapy or heat therapy, another
may find biofeedback or guaifenesin ther-
apy to be more beneficial. Same with
medications. What works for one patient
may not work for another. By working
with your health care team, you can find
the appropriate type of treatment just for
you.
Finding a doc or specialist that you prefer
and that works with you is very important.
Finding the right medical treatments that
work for you is also important. Communi-
cate with your doc. It may take a few dif-
ferent types of treatments before you find
the right one.
V o l u m e 2 , I s s u e 1 P a g e
I s I t T i m e
Ok, now that you have learned to
find a new physician, and how to
communicate with him, now we
are going to learn when it’s time to give up
the doc you have and find a new one. I
should know, I have had to do that.
I know that once you have established a
relationship with a doc, it is hard to decide
if it is time to go looking for a new one.
Our relationship with our docs is personal
and if we have been with the same one for
years, it is even harder to make that call/
decision to find a new one. So, if you are
unsatisfied or unsettled with your current
doc, and not sure if it’s time to start look-
ing for another, here are 10 signs to look
for:
1. Your doctor doesn’t listen to you.
Does your doctor routinely interrupt you
after one or two sentences? Do you find
your doctor attending to other matters
while you are trying to explain your
symptoms? (i.e. answering his cell
phone while with you) Does your doc-
tor repeatedly ask you questions you’ve
already answered? It’s time...
2. Your doctor doesn’t believe you’re
really sick.
Do you find your doctor frequently at-
tributing your symptoms to age, stress
or hormones? If you have a chronic
illness like fibromyalgia or chronic fa-
tigue syndrome, does your doctor dis-
miss it as either non-existent or a
“wastebasket diagnosis”? (Mine
did) Does your doctor imply that most
of your problems are psychosomatic?
It’s time...
Helping your
Family Help You
Your family is not sure what FM is
and even worse they are not sure how
it affects your life. What are you
going to do? It can be frustrating on
both ends. Look at it from both view
points. You are thinking…”they need to
understand you and what you are going
through”...They are thinking…”I don’t
understand, she looks fine, why is she
being this way?”…
Well here are some short but sweet things
you can do for them:
1. There are brochures available with
great info that you can give them. Also
providing them with some print outs from
the internet can be helpful. However,
don’t overwhelm them.
2. Asking for help is not easy, but letting
your friends and family know if you need
help can be helpful to both you and them.
3. Have one of them go to the doc with
you. Maybe if the doc has a couple min-
utes he wouldn’t mind answering a cou-
To F i n d A N e w
3. Your doctor dismisses all alternative
treatments as quackery.
Are you hesitant to tell your doctor
about supplements you’ve been taking
for fear of the lecture you’ll re-
ceive? Does your doctor make you
feel foolish if you inquire about an alter-
native treatment like acupuncture or
massage therapy? It’s time…
4. Your doctor refuses to look at ANY
information you find on the Internet.
Does your doctor reject anything found
on the Internet regardless of the
source? Is your doctor unaware of the
fact that there is a great deal of quality,
respected medical information available
on the Internet (for example, most major
medical journals, National Library of
Medicine), or is anything found on the
Internet dismissed without further inves-
tigation? If so...it’s time...
5. Your doctor is unwilling to consider
your ideas.
If you ask to have a lab test run or re-
quest a new medication, does your doc-
tor usually refuse without explaining
why? When you express concern about
something, such as a symptom or medi-
cation side-effect, does your doctor tell
you not to worry about it without ad-
dressing your concerns? If you say you
think you might have a particular dis-
ease or condition, does your doctor say,
“No, you don’t have that” without tell-
ing you why that’s not a possibility?
It’s time...
ple of their questions that they may
have.
4. If you are having mood swings, ex-
plain yourself and that you don’t think
you would make good company. It’s
better than being a “brat” to someone
and they won’t resent you.
5. Don’t tire out relationships with con-
stant complaints. They want to be there
for you, but not if we are always com-
plaining.
6. Offer to help others when you can.
That way they won’t feel that the help
only goes one way.
I guess the best thing is to provide infor-
mation. The more they understand
about FM, the more they will understand
you. Your relationships with friends
and family will be so much better.
2
D o c ?
6. Your doctor refuses to
refer you to a specialist.
If you ask for a referral to a
specialist, does your doctor refuse with-
out explaining why? (It took my Doc
about 4-5 months before he finally let
me see a specialist) Is your doctor of-
fended if you ask for a second opinion?
It’s time...
7. Your doctor views each appointment
as an isolated event.
Does your doctor fail to review your
chart at each appointment to refresh his
memory, look for symptom patterns,
and observe treatment history? Do you
get the feeling your doctor has no idea
who you are? Does your doctor treat
you like a new patient, asking you the
same questions you were asked at your
last four appointments? It’s time...
8. Your doctor is rude, arrogant, or
inconsiderate.
Is your doctor’s attitude one of “Do
what I tell you to and don’t ask ques-
tions”? Does your doctor make you feel
as if you are wasting his valuable
time? Does your doctor talk to you in a
condescending or patronizing man-
ner? When you ask a question, does
your doctor ever make you feel foolish
or stupid? Does your doctor routinely
keep you in the waiting room for several
hours? Do you usually have to leave
multiple messages before getting a re-
sponse? It’s time...
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 2 , I s s u e 1 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

Well, if you hadn’t noticed, I added a is expected to be in pharmacies by

page to the newsletter. Since some of
my articles have been going longer
and I have had to cut so many of them
short, I added this page so I can use it
as a “continued” page for those spe-
cific articles. I hope y’all don’t mind.
Check it out, I am getting ready to
start my second year doing this news-
letter. March will be one year since I
started. I can’t believe it. It is so ex-
citing and it gives me some new moti-
vation.
March 2009
Check with your insurance company
about alternative therapies. If they
don’t cover them, they might have
discounts for them. NF is a great ex-
ample of what you could ask for.
Happy Valentines
Day

For links to back issues of this

newsletter, you can find them in
my blogs on www.myspace.com/
fibrofriendsforever.
All material in this newsletter is provided
Savella was approved by the FDA for information only and may not be con-
for the management of fibromyal- strued as medical advice or instruction.
gia on January 14, 2009. While it No action or inaction should be taken
based solely on the contents of this
was in clinical trials, Savella was newsletter. Instead readers should con-
known by its generic name, mil- sult their physician or other qualified
health professionals on any matter relat-
nacipran HCl. Savella is a selec- ing to their health and well-being. Read-
tive serotonin and norepinephrine ers who fail to consult with appropriate
dual reuptake inhibitor. Savella health authorities assume the risk of any
injuries. The publisher is not responsible
for errors or omissions.

Fibromyalgia &
Pregnancy
If you have fibromyalgia and
are thinking about getting
pregnant, it's important to
learn all you can about both
conditions. Sometimes, symp-
toms of fibromyalgia -- such
as pain, fatigue, and depres-
sion -- are thought to be signs
of the pregnancy itself. As a
result, they may be under-
treated. In addition, the added
stress of having a baby may
cause fibromyalgia symptoms
to flare, making you feel
much worse.
Managing fibromyalgia dur-
ing pregnancy is possible. But
you need to spend time learn-
ing about the effects of preg-
nancy on symptoms of fi-
bromyalgia syndrome (FMS).
Fibromyalgia &
You
You also need to stay in touch stress, especially in the first three sure you talk with your doctor
with your fibromyalgia specialist months. With pregnancy, there before you stop any medicines.
when symptoms flare. are changes in the levels of estro-
gen, progesterone, and other hor- What treatments are recom-
mones. Also, since the time after mended for fibromyalgia dur-
a pregnancy can be difficult for ing pregnancy? To avoid letting
How does fibromyalgia affect mothers -- even those without fibromyalgia interfere with preg-
pregnancy? Along with weight fibromyalgia -- it's important to nancy, know what steps you can
gain, your body is out of balance, be aware of the possible increase take to ease the symptoms. The
and your shape takes a different safest treatments for pregnant
in pain and other symptoms that
form. There are few studies on may occur after giving birth. women with fibromyalgia may
fibromyalgia in pregnant women. include massage, exercise, yoga,
However, a recent study at Tem- meditation, and rest. If you suffer
ple University found that women with fatigue and ache all over,
with fibromyalgia had more Are fibromyalgia medications
safe during pregnancy? At this make sure you rest 20 to 30 min-
symptoms of pain during preg- utes at least two or three times a
nancy than women who did not time, no fibromyalgia medica-
tions are completely safe to use day. A warm shower or bath is a
have fibromyalgia. Also, fi- good way to ease pain. Also, use
bromyalgia symptoms seemed to during pregnancy. In fact, doctors gentle stretching exercises and
be exacerbated during pregnancy. recommend that women with exercises recommended by your
Pregnant women with fibromyal- fibromyalgia go off of painkillers doctor for relief.
gia may experience significant and antidepressants before they
pain, fatigue, and psychological become pregnant. However, be
(Continued on page 4)
 V o l u m e 2 , I s s u e 1 P a g e
N F C o n t i n u e d
although further training will likely be necessary.
Total length of the treatment will vary from pa-
tient to patient and be dependent on their issue.
For example, individuals seeking help for ADD
may require 40 or more appointments while
those dealing with chronic pain may need less
than 20 sessions. Patient and the NF trainer will
discuss what the right length of treatment is for
circumstance. This can usually be determined
within the first few sessions.
Few adverse side effects of NF have been found
when the technique is practiced properly and
under professional guidance. As for results, be-
cause the brain is effectively being taught a new
skill, once this skill is learned and mastered, it
can be retained and continuously used. There-
fore, it is thought that, in most instances, the
results of NF are permanent.
Depending on where a person goes for NF train-
ing and the experience of the professional offer-
ing the training, one session may cost between
$50 and $125. Some insurance providers may
cover some of the cost or offer an annual cap on
services. In some cases, it may be necessary to
provide the insurance company with both a diag-
nosis and prescription from either a doctor or a
psychiatrist before being issued re-imbursement.
Medicare also covers NF in some instances for
certain conditions.
Here is a link with some great info regarding NF
to provide your doc or insurance provider. http://
www.eegspectrum.com/HealthProfIntro/
ManagedCareProviders/
Depending on some things I have going regard-
ing my own treatment, I may just provide my
own doc with the info and see what he says.
Is It Time To Find A New Doc?
Continued
9. Your doctor’s staff is frequently rude or
unreliable.
Are staff members rude to you in person or
on the phone? Have there been times that
your messages were not given to the doc-
tor? Do they fail to call in prescription re-
fills in a timely manner? It’s time…(this
was one of my biggest reasons for chang-
ing)…..
10. Your doctor refuses to cooperate with
other healthcare professionals as part of
your healthcare team.
Is your doctor unwilling to take the time to
connect and compare notes with other mem-
bers of your healthcare team (for example,
specialists or physical therapists)? It’s
time...
To Switch or Not to Switch
Should you look for a new doctor if even
one of these signs is true of your doc-
tor? Not necessarily. It depends on what is
important to you. You really need to take
everything into consideration and decided.
For myself, it wasn’t just one thing that
made me do it, it was one thing too many
that broke the camels back, so to speak.
There is no such thing as a perfect doc-
tor. Personalities vary and a doctor that you
love, may be intolerable to another patient.
Ultimately, the decision is yours. Just re-
member that you deserve the best health-
care you can get. Your doctor provides a
service––healthcare. You are paying for
that service. I have said this before, the doc
works for YOU. You don’t work for the
doc. If you’re not receiving satisfactory
service, you need to take your business
elsewhere.
In love and health, Jodie
4
Pregnancy & Fibromyalgia
Continued
Why is exercise important for fi-
bromyalgia and pregnancy? Exercise
helps keep you fit. It strengthens muscles,
keeps joints flexible, and boosts mood by
increasing serotonin in your body. Sero-
tonin is a neurotransmitter that scientists
have found to be related to fibromyalgia.
Neurotransmitters are chemicals that send
specific messages from one cell to another.
While only a small percentage of serotonin
is located in the brain, this neurotransmit-
ter is believed to play a vital role in medi-
ating moods.
Too much stress can lead to permanently
low levels of serotonin. That, in turn, can
lead to aggression and feelings of depres-
sion. Lack of exercise can aggravate low
serotonin levels. On the other hand, in-
creased levels of serotonin in the brain are
associated with a calming, anxiety reduc-
ing effect. In some cases they are also
associated with drowsiness. Having a sta-
ble level of serotonin in the brain is linked
with a positive mood.
Are women especially affected by levels
of serotonin? It appears that women may
have a greater sensitivity to changes in
serotonin. Mood swings during the men-
strual cycle or menopause or following the
birth of a baby are induced by the action of
hormones on neurotransmitters.
Various factors can have a positive effect
on serotonin levels. These include sunlight,
certain carbohydrate foods, some hor-
mones, and exercise. Exercise acts as na-
ture's tranquilizer, helping to boost sero-
tonin levels in the brain. Studies show that
exercise also triggers the release of epi-
nephrine and norepinephrine, which are
known to boost alertness.
What exercises can I do with fibromyal-
gia during pregnancy? Yoga along with
other stretching and normal daily activities
during pregnancy, consider exercising in a
warm swimming pool. The heat might help
ease the fibromyalgia pain while the
stretching and other low-impact exercise
can keep your muscles and joints flexible
and strong.
The water temperature should feel com-
fortable but not hot. In a pool, water tem-
peratures from 83 to 88 degrees Fahrenheit
are usually comfortable for exercise. But if
you're pregnant, ask your doctor. Do not
use a whirlpool bath or spa or hot water in
your bath during pregnancy. Doing so
could harm fetal develop-
ment. Learn all you can
about fibromyalgia and
pregnancy before you get
pregnant. Then, you will
be well prepared once you
do get pregnant.
 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 3.
W h a t H a p p e n s ?
In some cases, chronic fatigue syndrome (CFS) develops after an illness such as mononucleosis (mono) or flu, or after a period
of unusual stress. But it may also develop without warning, even if you have not been sick. The fatigue may come upon you
gradually or quite suddenly. Because fatigue can be vague and can be caused by many things, you might not pay attention to
the problem for several weeks or months. It is hard to say what is normal with CFS because the diagnosis often is not clear for
some time.

In general: Symptoms are worse at the beginning. Later, you may feel better for a time and then feel worse again. Or, your
symptoms may disappear entirely. Many people improve in a year or two and do not have a relapse. Some people continue to
have severe fatigue and other symptoms for many years. Research shows that the seasons affect when many people get CFS.
The highest numbers of people who develop the illness are diagnosed from November through January. Some people find the
fatigue, pain, and thinking problems caused by CFS greatly hamper their lives, but other people are not nearly as affected.

Most people are still able to perform some of their usual activities at home and work, but they often are unusually tired after they
do them. People often have to cut down on social and recreational activities to save their energy for work and family.
Other people have trouble doing most or all of their daily activities, including work and the basic chores of daily living. They may
have to carefully plan how to best use their energy.
People who are most severely affected by CFS may have difficulty getting out of bed and may require help with basic activities
such as dressing, eating, and bathing.

Dealing with depression

As with many long-lasting illnesses, you may develop depression at some point. Be-
tween 50% and 66% of people with CFS do. Here are some important facts to keep in
mind:

Your mind and body are connected and influence each other. Physical illnesses can be
made worse-or better-by feelings and attitudes, and vice versa.
Your fatigue is real, not imaginary. It is your body's reaction to a complex interaction of
both emotional and physical factors. To successfully manage your CFS and get back to
normal, you need to pay careful attention to how what you are doing and feeling affects
your symptoms. CFS is often made worse by depression or anxiety. Like any other
medical illness, these conditions may need to be treated. Helping your depression or
anxiety can, in turn, help your other CFS symptoms. This does not mean that your
symptoms are all in your head. It does mean that your mental health can affect your
physical health.

If you have CFS and feel depressed, talk to your doctor. Medicine for depression may
help you feel better and help you cope with the stresses of having a chronic illness.
Some of these meds may even help with other symptoms.