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

U n d e r s t a n d i n g f i b r o m y a l g i a : ? C a u s e s ?
HOW DID I GET THIS?!? There is no known cause Most of what we are is because of the genes and not felt guilty about being tired. Maybe, just
of fibromyalgia. YET! Although researchers have a we are born with. maybe I wouldn’t be as bad as I am now. Tak-
number of different possibilities. Here are a few: 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
One: Emotional Stress/Trauma. It has been thought ies has experts agreeing FM is a central nerv- that, well, lets just say it was not working out. I
that severe emotional stress or trauma could be the ous system disorder. did not allow myself down time. Being tired or
onset of fibromyalgia. This isn’t a proven cause of sick was not acceptable.
FM. I know that one of my biggest triggers though, Fibromyalgia can come on suddenly or appear
is stress. Whenever I get upset or overly stressed, gradually. In most, it may be triggered by the Did I push my body into this? Did I get some
my symptoms tend to worsen and flare. 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
Two: Infection. Although not yet discovered, there hadn’t noticed before. have that could be causing all of this? Is it a
have been some researchers that thought infections disease medical science hasn’t even really
or past infection may have caused FM. Again, not For me, I look back and think about the way discovered yet? What chemicals are we made
proven. things were a year or so before my diagnosis. of that are not working right in my brain, in my
Three: A third possible cause that I found 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
reading was a theory that FM was some how related that I was going through this in a milder degree sometimes, but we aren't’...I promise. If we
to hypothyroidism. 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
Four: There are possibly genetic factors involved. 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 2

Time management tips

How many good hours in a day do The first thing I had to do was learn most important things done.
you have? If you are a chronic pain how to say “NO”! And not only to I also plan my errands in a certain
sufferer, you know what I am talk- say “no”, but to say it without the order to make a circle through town.
ing about. GUILT. It is much harder to say Dorky I know, but it works for me.
When I am in remission, I probably “no” without the guilt. (but it is I am flexible if something doesn’t
have around 4-5 good hours a day. healthier). work out, or I need to just go home,
When I am in a flare, which is most Next I had to learn to live one day at so make sure you are too. Then, I
of the time, I have 0-3 good hours a time. I learned that planning cer- just redo my list for the next day.
each day. We have so much to do tain things in advance just isn’t real- Regarding the cleaning list. Have
in such a little amount of time. The istic for those with fibromyalgia. you ever heard of Flylady.net? This
average person (Normal's) has 8-16 We just don’t know what each day is a great website for helping to
hours per day to accomplish what is going to bring us. Will it be a manage and keep organized our
they need to and sometimes that good day or a bad day? Will I be homes. It starts you off with very
isn’t even enough. So how does a able to drive? Get out of bed? Or simple baby steps. This website is
fibromite do it? Good time manage- even get out of the house? very helpful in regard to being able
ment! Day timers, Palm Pilots, Note Pads, to spend just a few minutes at a time
Fibromites have to manage their Post-Its...whatever it is, use it. working around the house. You will
time differently than the Normal's Write it down! FibroFog WILL love it. I also use it to help me to
do. kick in when you don’t want it too. delegate, so of course my boys
Here are some lists that I make: would like to squash Flylady, but I
Errands list, cleaning list, shopping love her.
lists, and my delegating list. This So just a few, brief tips to manage
Coming last one is my favorite. The kids
don’t like it, but oh well, I do.
Prioritize your list. You never know
the few (good) hours each day that
we have to get accomplished what
we need to.
Soon: when you will run out of steam and
at least you will have gotten the
Just remember, don’t put too much
pressure or stress on yourself if you
Meds vs. Natural can’t finish what you want in the
Life Style Changes time you have. You will give your-
Hypnotherapy self ammunition for a flare and
FM Diet make the next day worse. Don’t
worry...Be happy! It will all get
Stress Management done.
FMS vs. CFS
FibroHugs...Jodie

Deep Sleep as a Pain Reliever

Do you wake up in the morning still interfere with the sleep processes. S. Hakki Onen, M.D., Ph.D., used
feeling tired? If you do, chances Sometimes, it may not be easy to Lentz’s technique to prevent his
are you may have an unidentified detect these disturbances. For ex- healthy subjects from entering SWS,
sleep disorder. Recent studies re- ample, Martha Lentz, Ph.D., R.N., and then he allowed them to sleep
veal that more than 80% of fi- of Seattle, WA, took healthy, middle- through the night undisturbed (the
bromyalgia patients have a real, aged women and deprived them of recovery night). He found that SWS
detectable sleep disorder. Re- the deepest level of sleep, com- was substantially increased on the
searchers are re-examining how monly referred to as slow wave recovery night, along with the sub-
lack of restful sleep causes more sleep (SWS). ject’s pressure pain thresholds. In
pain. Below is a summary of their The subjects were allowed to sleep fact, the increase in SWS produced
findings I found in an article from all night long, but every time they greater pain relief than one would
the Fibromyalgia Network. began to enter SWS, a loud buzzer receive from a large dose of ibupro-
(www.fmnetnews.com) aroused them to a lighter level of fen!
sleep (but did not wake them up). People with fibromyalgia have lower-
“Bernd Kundermann, Ph.D., of Ger- On the surface, their sleep efficiency than-normal pressure pain thresh-
many, studies the relationship be- (which is measured as the percent of olds, but the study above indicates
tween disturbed sleep and enhanced time spent sleeping) remained the that increasing SWS will raise this
pain. He says, “The pain-relieving same, but their quality of sleep was threshold and lead to less pain.”
action of the body’s natural opioid horrible. By the third night of SWS
system relies upon undisturbed sleep disruption, the women developed For some reason that I am un-
(e.g., sleep continuity) ... this points to muscular aching and their pressure aware of, I do not get good sleep.
a detrimental effect of sleep disrup- pain threshold was lowered (i.e., I have gone 3 nights without Am-
tion on the ability of the opioid system their tenderness to applied pressure bien. All I want tonight is a good
to provide pain relief.” Therefore, one was enhanced). nights sleep. Hello Ambien.
needs to correct the disturbances that What happens after depriving a per- Sleep tight y’all…Jodie
son of SWS for three nights?
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 NOW lets turn this around. YOU September. It is something to look
FM are always feeling alone and ARE NOT ALONE! We have all forward to. I am planning it out
misunderstood. Yet there are gone through this in one way or with a couple other people. The
more than 6-9 million people in another. All Fibromites suffer from other email outreach projects will
the U.S. suffering along with us. the “Why don’t they understand come over the summer. Look for
Isn’t that crazy? It is because of me?” Syndrome. Ya know what? more emails and a new website.
WHAT we suffer from. FM is mis- You now have a new family. The We are also going to plan an event
understood, not us personally. Fibromite Community is yours. We for next years Awareness Day.
Every chance I get I talk to people instantly accept you. Once you are May 12, 2009. Watch your news-
about FM and other pain disor- diagnosed with FM, and I mean at letters for information.
ders. Every conversation leads to the very moment you are diag- So, are you still feeling alone? I
‘this or that’ person having or nosed, you are accepted. All you sure hope not. But, if you are go-
knowing someone with FM. have to do is let us know who you ing through a rough patch, you
So, then, why is it we feel so alone are. This very group, FibroFriends- have my email address and my
when there are so many out Forever, accepts you whole heart- phone number. I can even put you
there? Why is it so hard for others edly. We accept you, understand in contact with another group
(the norm’s) to relate to us? Why you, and are here for you. member if you like.
can’t we get our friends and family I have some good news for you.
to understand or accept that we We are going to be making some Remember: You are never alone.
truly are suffering even though we changes with our group. We will
look fine? (FM: The Invisible Dis- continue with the newsletters. We {{{ YOU }}}
ease) will be adding on to our email out-
One of our new Fibro Friends got reach. We will also be starting a
me to thinking about this. local monthly support group and
(Welcome Leah) I hadn’t thought those of you out of town will still
about it quite in this way, until she be able to “attend”. How? Well
and I were talking one evening. we are going to work it so that
How many of us have lost a part of there are a couple options. One
the relationships we have with will be to call in and it will be like a
those who do not understand FM? conference call so you can partici-
The majority of us have. It can be pate in the meeting. The other will
depressing and cause quite a bit be via the computer with an in-
of anxiety. Two symptoms I can do stant message service. The local
without. support group won’t start until

Massage Improves Sleep, Decreases Pain & Body Care

Substance P in Fibromyalgia Patients
Corner
After receiving massage twice points." Levels of substance P are group showed a decrease in anxi- substance P. According to the
weekly for five weeks, fi- significantly higher in people with ety and depressed mood immedi- study's authors, these findings
bromyalgia patients experi- fibromyalgia. Twenty-four adults ately after sessions on the first "highlight the clinical significance
enced improved mood and with this condition were randomly and last days of this study. More of using massage therapy as a
sleep, and their levels of sub- assigned to either a massage- long-term effects were also evalu- complementary treatment." -
stance P, a neurotransmitter in therapy or relaxation group. Sub- ated. The Center for Epidemiologi- Source: Touch Research Insti-
the pain fiber system, de- jects in the massage group re- cal Studies Depression Scale was tute. Authors: Tiffany Field, Ph.D.,
creased, along with the num- ceived 30-minute massages twice used to measure depressive Miguel Diego, Christy Cullen,
ber of tender spots throughout a week for five weeks. The ses- symptoms. Subjects wore a mo- Maria Hernandez-Reif, Ph.D.,
their bodies, according to re- sions combined several types of tion recorder at night to record William Sunshine and Steven
cent research. The study, bodywork, such as Swedish mas- activity during sleep and kept a log Douglas. Originally published in
"Fibromyalgia Pain and Sub- sage, shiatsu and Trager® work. of the time they went to bed and the Journal of Clinical Rheumatol-
stance P Decrease and Sleep The routine consisted of moderate awoke. A physician assessed ogy, April 2002, Vol. 8, No. 2, pp.
Improves After Massage Ther- pressure and stroking of the head, participants' illness, medication 72-76.
apy," was conducted by Tif- neck, shoulders, back, arms, use, tender points and pain; and
fany Field, Ph.D., Miguel hands, legs and feet. Participants saliva samples were taken before
Diego, Christy Cullen, Maria in the relaxation-therapy group the first and last sessions to
Hernandez-Reif, Ph.D., Wil- met for a half-hour twice weekly measure levels of substance P.
liam Sunshine and Steven for five weeks and were given The results revealed that, over the
Douglas of the Touch Re- instructions on progressive muscle course of the study, the massage
search Institute at the Univer- relaxation while lying quietly on group, as compared with the re-
sity of Miami. According to the the massage table. The State Trait laxation group, experienced de-
American College of Rheuma- Anxiety Inventory was used before creased depression; improved
tology, fibromyalgia is defined and after sessions on the first and sleep; decreased pain, fatigue and
as "widespread chronic mus- last days of the study to measure stiffness; improved physician as-
culoskeletal pain of unknown how subjects felt at that time. Both sessments; decreased tender
cause and multiple tender the massage and the relaxation 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: [email protected]
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- strong role in the development of FM.
ceptible to FM than another? Wait, I see a vicious cycle here. Stress leads
let me rephrase that question...WHY to sleep disorders which leads to poor Q&A
ME?!? sleep, which in turn leads to being Q - Have you heard of
Well, lets look at the risk factors vulnerable to stress. For me when I using Ribose in treating some FM
here. First of all, statistics show that have gone through high stress, or I symptoms?
there are 6-9 million people in the have gotten really upset, this triggers
US suffering with FM. Why the 3 me into a flare-up. Are you a middle-
million spread you ask. Well, here aged woman with high stress that A - I have recently done some dig-
is my theory. I believe there is such doesn’t sleep at night??? LOL!!! Ok, ging around about Ribose. What I
a huge spread because there are so I just had to put that out there...I mean have found so far is that it is used to
many people who start out seeking really…?!?! boost energy and relieve some of
the achiness that FM patients suffer
medical treatment for all the symp- What about other chronic pain condi- from. I know that supplemental Ri-
toms that they are suffering from, tions? Rheumatoid Arthritis, Lupus, bose is used by some athletes to
but because of the frustration from Ankylosing Spondylitis, Chronic Fa- help with their recovery time after
ignorant, unsympathetic doctors and tigue, Gulf War Syndrome, and the list intense exercise. It relieves the
the lack of support these people re- goes on. These all increase the risk of fatigue, soreness and stiffness that is
ceive from their own family, they developing FMS. (Fibromyalgia Syn- experienced. If you are considering
give up. They are told that they are drome) trying it, just check with your doc,
fine. After all, “the tests say they Do any of these risk factors make any and do some further reading.
are fine”. So, that is my theory of sense to you? These may or may not Thanks for the question.
the large gap in numbers. Ok, lets be risk factors that pertain to your
move on. developing FM and there isn’t much Email your questions to:
[email protected]
Out of all these FM sufferers, 9 out we can do to even change these risk
of 10 of them are women. Being a factors if they did pertain to us. One
woman is a risk factor. Women are thing we can do is make a conscious
more prone to develop FM during effort to manage what we can. If
menopause, but studies suggest that stress is going to cause a flare, then
that the majority of cases have their work effectively to change what is
onset between the ages of 20 and 50. causing the stress, or to change how
So, being a middle-aged woman is you are reacting to the stress. Learn to
even more of a risk factor. manage your health, manage your
There is some research that shows triggers, manage your life. Don’t All material in this newsletter is provided for
women closely related to a FM suf- worry, I know it is easier said then information only and may not be construed
ferer are more likely to develop FM done. That is why I am here. To help as medical advice or instruction. No action
themselves. This indicates a genetic where I possibly can. Even if it is just or inaction should be taken based solely on
defect that predisposes some people to send out this newsletter. A big part the contents of this newsletter. Instead
from the beginning. of this management is being part of a readers should consult their physician or
The next risk factors indicated are community and that, my Fibro Friend, other qualified health professionals on any
matter relating to their health and well-
sleep disorders and stress. Some you are already doing. So, as I run out being. Readers who fail to consult with
researchers say that sleep disorders of space, I would love to hear from appropriate health authorities assume the
are the root of FM. Studies have you. Shoot me an email. Send me risk of any injuries. The publisher is not
suggested that chronic stress plays a your story, a moment, something to responsible for errors or omissions.
vent or share.
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.