You are on page 1of 4

Volume 1, Issue 1 March, 2008

Fibro Friends Forever


F I B R O F R I E N D S F O R E V E R

L y r i c a : f i r s t f i b r o m e d i c a t i o n
a p p r o v e d b y f d a
Article from www.fda.gov/consumer/updates/fibromyalgia062107.html

After meeting on the Internet hasn’t always been recognized


Butterflies are in 1997, Lynne Matallana as a specific illness,” says
and Karen Lee Richards dis- Jeffrey Siegel, M.D., clinical
symbols of covered they had a lot in team leader in FDA’s Division
of Anesthesia, Analgesia, and
metamorphosis. common. They both had Rheumatology Products. “In
seen numerous doctors be- 1990, the American College of
Fibromyalgia fore being diagnosed with Rheumatology developed crite-
fibromyalgia, a chronic con- ria for diagnosing it, and this
gives us the dition characterized by fa- marked a major step forward
tigue and widespread pain in Change, grow and become in helping more people under-
opportunity to muscles and joints. They strong. stand how to recognize the
symptoms and how to treat
change, grow both had trouble finding
medical information and
them.”
Association (NFA), an organiza- People with fibromyalgia have
and become support for coping with the tion that now provides support, typically turned to pain medi-
illness. Seven months after research information, medical cines, antidepressants, muscle
stronger. meeting, they started gather- education, and messages of relaxants, and sleep medi-
ing with five other people hope to millions. Fibromyalgia cines. On June 21, 2007,
with fibromyalgia who also affects 2 to 4 percent of the Lyrica (pregabalin) became the
wanted to bring awareness to population, according to the first FDA-approved drug for
American College of Rheuma- specifically treating fibromyal-
the issue." We called our-
tology (ACR). It mostly affects gia. Marketed by Pfizer Inc.,
selves ‘the pillow posse’ be-
women, and tends to develop Lyrica reduces pain and im-
cause we would meet and
in early to middle adulthood. proves function in patients
have our pillows to support our
But men and children also can with fibromyalgia.
aching bodies,” Matallana
have it. “One of the chal- (next page)
says. Those gatherings grew lenges is that fibromyalgia
into the National Fibromyalgia

L a b t e s t s a n d f i b r o m y a l g i a
Date updated: July 09, 2007 If your doctor thinks that you may have lems can cause fatigue and muscle soreness.
6. A blood calcium level test to check for a low
Shannon Erstad, MBA/MPH; Ralph Poore another muscle or joint disease based calcium level, which can cause muscle
Content provided by Healthwise Doctors do on your symptoms, history, and physi- cramps
not use lab tests to diagnose fibromyalgia. cal exam, he or she may do any of the The test results may show that you
The results of lab tests done on people with following tests: have a disease other than fibromyalgia.
fibromyalgia should be normal unless an- 1. A complete blood count (CBC) It is also possible that you have both
2. An erythrocyte sedimentation rate (ESR) or a
other condition is present. C-reactive protein (CRP) test to help identify
fibromyalgia and another condition.
You may have lab tests to rule out other diseases that cause inflammation, such as Test results can be false-positive. Doc-
diseases or to determine whether you have polymyalgia rheumatica tors do not use these tests to diagnose
3. A rheumatoid factor (RF) test to check for
another disease in addition to fibromyalgia. rheumatoid arthritis fibromyalgia. You only need them if
Fibromyalgia may occur along with other 4. An antinuclear antibodies (ANA) test to your medical history and physical
check for certain conditions such as systemic
joint and muscle (rheumatic) diseases, such exam suggest that you might have a
lupus erythematosus (a condition that can
as rheumatoid arthritis. Discovering these affect the bones and skin and several other condition other than fibromyalgia.
other conditions is important, because they organs)
5. Thyroid hormone tests to check for low or
may require different treatment. high thyroid gland activity. Thyroid prob-
V o l u m e 1 , I s s u e 1 P a g e 2

L y r i c a : c o n t i n u e d f r o m p a g e 1
Siegel says. Other side effects seen in that he could care for her. “I had a
While patients with fibromyalgia have patients taking Lyrica include swelling yoga instructor coming to my house
been shown to experience pain differ- of the hands and feet, and allergic three times a week to help me get out
ently from other people, the mecha- reactions. of bed. The pain and exhaustion were
“Studies showed that a substantial so bad that there were days that the
number of patients with fibromyalgia only activity I was able to do was walk
received good pain relief with from my bed to the mailbox and back
Lyrica, but there are other patients to bed. Each day seemed like an eter-
who didn’t benefit,” Siegel says. “This nity and so I had to focus on just get-
new approval marks an important ting through one day at a time.”
advance, and we think it’s reason for People with fibromyalgia can experi-
nism by which Lyrica produces its ef- optimism. But we still have much ence pain anywhere, but common
fects is unknown. The drug was al- more progress to make.” sites of pain include the neck, shoul-
ready approved to treat seizures, as ders, back, hips, arms, and legs. In
well as pain from damaged nerves Debilitating Effects addition to pain and fatigue, other
that can happen in people with diabe- Matallana, who is now president of symptoms include difficulty sleeping,
tes and in those who develop pain NFA, says she was a partner in an morning stiffness, headaches,
following the rash of shingles. advertising firm when her life turned painful menstrual periods, tingling
“People who take Lyrica should completely upside down because of or numbness of hands or feet, and
be aware of important side effects, her symptoms. “I finally had to stop difficulty thinking and remembering.
including sleepiness and dizziness,” working in 1995 and spent most of Some people with the condition
the next two years in bed,” she says. may also experience irritable bowel
Her husband quit his job and became syndrome, pelvic pain, restless leg
a consultant working from home so syndrome, and depression.

What Causes Fibromyalgia?


MAY 12TH IS Scientists believe that the condition
may be due to injury, emotional
distress, or viruses that change the
way the brain perceives pain, but
the exact cause is unclear. People
with rheumatoid arthritis, lupus, and
spinal arthritis may be more likely to
have the illness.
According to ACR, people with
fibromyalgia can have abnormal levels
of Substance P in their spinal
fluid. This chemical helps transmit
and amplify pain signals to and from
the brain. Researchers are looking at
www.nfra.net/awarebracelet the role of Substance P and other
neurotransmitters, and studying why
F i b r o m y a l g i a people with fibromyalgia have in-
s y m p t o m s creased sensitivity to pain and
whether there is a gene or genes that
cramps, vulvitis, painful intercourse, make a person more likely to have it.
Widespread pain and stiffness any- and burning discharge. Skin & Nail (page 4)
where in the body. The pain can be Problems such as rashes, itchiness,
anything from a dull type of pain to a inflamed skin, and brittle nails. Q&A
sharp and intense kind of pain. The Symptoms of panic attacks, a rapid
pain can be in joints, muscles, tendons heartbeat, and fainting. Q - Do you have a question?
or even the skin. Depression A sense of hopelessness
Brain Fog, Fatigue, and Irritability because of the pure misery and
Lack of mental focus, extreme lack of thoughts of not getting better. A - Send me an email and I will do
energy (chronic fatigue), headaches, Remember, these are symptoms and my best to get an answer for you, or
and dizziness. Insomnia Disturbed not a diagnosis. If you or someone refer you to a specific website that
sleep (never getting a good night's you know is suffering these, please might help.
sleep), and waking up at night. seek medical care.
Irritable Bowel Syndrome Diarrhea, fibrofriendsforever@yahoo.com
gas pains, and bloating. Genitourinary
Problems such as vulvar pain, vaginal
V o l u m e 1 , I s s u e 1 P a g e 3

Y o u r p e r s o n a l s t o r i e s / e x p e r i e n c e s

Do you have a fibromyalgia story? This is ’our’ newsletter. Lets write part time and go to school part time.
A chronic pain story? What about it together. Even this can be too much for me. I
headaches/migraines? Do you So, what would you like to see? I have have the worlds greatest boyfriend.
know someone with these health so far made room for the following: He is so supportive and caring. I love
 Main Article (Large) him dearly.
issues? I said this would be a brief bio, not my
This is the place where you can tell  Second Article (Medium) story. That I will save for another time.
yours or their story. Send me an  Third Article (Small)
email :  Info/ads/quick blurbs/ Oh, What about a column with some-
(fibrofriendsforever@yahoo.com) announcements thing about Dr.’s or Dr. visits? Exer-
in about 300 words, and I will pub-  Personal Stories/Experiences cises? Medication Descriptions? Diet
lish it.  Q & A Tips? Just throwing some things out
Even if it is just someone you there. I probably could go on and on
 Healthy Tips but I really want to put into this news-
would like to recognize, or honor.  Loretta’s Corner letter what you want to get out of it.
Email me.  Fibro Friends Forever Info On that note, email me with your
I would also like to take some of thoughts and “votes”. I will do my very
your suggestions and ideas re- Let me give you a brief bio about my- best to provide you with the best pos-
garding this newsletter. This is a self. I am 40 years old and have been sible information.
group effort, I can not do it alone. diagnosed with fibromyalgia for 2 Blessed be and Fibro Hugs to you all.
A big thing to admit for a fibromite. years. The more I look back, the more Smile and be strong. Jodie
We tend to be organization and I realize I had this syndrome a lot
control freaks. longer. I am a single mom of 3. Two
boys and a girl. 16, 14, 13. I work

Fibro Friends Forever


Support Group Info
I would like to start a sup-
port group. If you are inter-
ested, please contact me by
email. If you know someone
else who may be interested,
let me know. This support
group will be for anyone deal-
ing with a pain management
disorder.
fibrofriendsforever@yahoo.com

LORETTA’S CORNER
Loretta is my body worker. I
don’t know what I ever did
without her. She has made
some of my symptoms and
days manageable. My hope
is that each month she will
contribute something about
bodywork for ya all to read.
Be on the look out!!!
Fibro Friends Forever has been created for
F I B R O F R I E N D S
F O R E V E R Fibromyalgia Awareness. Its mission is to
help those with fibromyalgia change, grow
and become stronger. Our goal is to make
PO Box 1082
Porterville, CA 93258 fibromites and normal's alike aware of the
issues that face those with fibromyalgia on a
Phone: 559-756-0894
E-mail: fibrofriendsforever@yahoo.com daily basis. Education is the key to our
myspace URL: myspace.com/fibrofriendsforever health. As of yet, we only provide informa-
tional services, but soon will include support
group services.
change, grow and become strong

L y r i c a : c o n t i n u e d f r o m p a g e 2
Getting a Diagnosis Approved for: Lyrica is approved for More than Medicine
Matallana says she felt her suffering treating fibromyalgia in adults who are People with fibromyalgia may find
was being dismissed as she went 18 years and older. Pfizer has agreed to relief of symptoms with pain relievers,
from doctor to doctor looking for perform a study of the drug in children sleep medicines, antidepressants,
answers. “Many doctors suggested with fibromyalgia and a study in breast- muscle relaxants, and anti-seizure
that it was just stress,” she says. feeding women. medications. But medication is just
“Some of them even made references How it works: Lyrica reduces pain one part of the treatment approach.
that it was all in my head. I was even- and improves function in patients Walking, jogging, biking, gently stretch-
tually misdiagnosed as having Lupus.” with fibromyalgia. The mechanism of ing muscles, and other exercises also
When Matallana was 39, a rheuma- action is unknown, but there is some can be helpful. What helped Matal-
tologist who was just starting his data suggesting that it has effects lana was a combination of medicines
practice, finally diagnosed her with on the release of neurotransmitters for pain and sleep, treatment for some
fibromyalgia. “With my doctor’s help, in the brain. Neurotransmitters are of the overlapping conditions like mi-
I started to feel better,” she says. “It chemicals in the brain that transmit graines and irritable bowel syndrome,
made all the difference that I had a signals from one neuron to another. and a combination of water therapy,
health care provider who could give People with fibromyalgia experience massage and yoga. Walking, jogging,
me insights as to what fibromyalgia pain differently than people who biking, gently stretching muscles, and
research was showing, and that there don’t have the condition. Treatment other exercises also can be helpful.
were other people feeling what I was with Lyrica reduces the level of pain Emotional support also is essential,
feeling.” in some patients. Matallana says. “My husband always
Family physicians, general internists, Effectiveness: The effectiveness of believed me, and when you have that
and rheumatologists are the doctors Lyrica in treating fibromyalgia was kind of support it makes a difference.
who typically treat fibromyalgia. established in two randomized, placebo- It’s really about facing chronic pain for
There is no diagnostic test for it. Doc- controlled trials of approximately the rest of your life. So dealing with
tors make a diagnosis by conducting 1800 people. These trials showed that the emotional impact and not just the
physical examinations, evaluating treatment with Lyrica in doses of 300- physical side is very important.”
symptoms, and ruling out other condi- 450 mg per day reduced pain and im-
tions. For example, fibromyalgia can proved function in patients with fi- For More Information
be distinguished from arthritis be- bromyalgia. They also demonstrated that National Institute of Arthritis and
cause arthritis causes inflammation of symptoms of fibromyalgia worsened Musculoskeletal and Skin Diseases
tissues and joints and fibromyalgia does when Lyrica was withdrawn. http://www.niams.nih.gov/hi/topics/
not. Another condition with similar symp- Safety: The most common side effects fibromyalgia/fffibro.htm
toms, hypothyroidism, can be confirmed of Lyrica include dizziness and sleepi- American College of Rheumatology
with a blood test. Diagnostic criteria set ness, blurry vision, weight gain, trouble http://www.rheumatology.org public/
forth by ACR include a history of wide-
concentrating, swelling of the hands and factsheets/fibromya_new.asp
spread pain for at least three months and
pain in at least 11 of 18 tender point sites. feet, and dry mouth. Allergic reactions National Fibromyalgia Association
can also occur. These are rare, but po- www.fmaware.org
First Drug Approved tentially serious. FDA advises patients to Fibromyalgia Network
Drug name: Lyrica (pregabalin) talk with their doctors www.fmnetnews.com
Manufactured by: Pfizer Inc. about whether using Lyrica will impair
Approval date: June 21, 2007 their ability to drive.