Volume 9 - Issue 2
Unraveling Fibro’s Impact Lyme Disease & Chronic Pain
As ﬂowers bloom and Spring awakens, watch out for ticks…
idespread muscle pain, severe fatigue and exhaustion,
difﬁculty concentrating, and consistently disrupted
sleep… yme disease is the fastest president of LDA. “Lyme of the body—from the joints
growing infectious disease disease often goes and connective tissue to the
These are just a few of the many persistent and sometimes in the United States, with undiagnosed for long periods heart, spine, brain and other
disabling symptoms of ﬁbromyalgia, a common and complex an estimated 225,000+ new of time, and sometimes it is areas.
chronic pain syndrome that affects all aspects of a person’s life— cases each year, according to not adequately treated, so
physical, mental and emotional. Here, they may reside quietly,
the national Lyme Disease patients may go on to develop not causing any major
While the exact cause of ﬁbromyalgia remains a mystery, there Association (LDA). Named persisting symptoms,” she problems, or they could trigger
are likely a number of factors involved. A growing body of after Lyme, Conn., where it said. a strong proinﬂammatory
research points to an abnormality in the way the brain processes was ﬁrst found, Lyme disease While most people have a immune response that may
pain signals as the primary cause. is transmitted by the bite of an complete resolution of lead to swelling and/or pain in
infected deer tick. symptoms after standard the joints, an irregular heart
Very often, the syndrome appears to be triggered by an illness or
Often, people are unaware treatment of early Lyme rhythm and/or meningismus.
injury that causes trauma to the body.
they have contracted Lyme disease with a 3-week course of Meningismus is the irritation
Fibromyalgia affects an estimated ﬁve million people in the disease, since ticks carrying antibiotics, some are left with of the membranes
United States. the Lyme-causing bacteria are ongoing, potentially surrounding the central
Sadly, many of these patients often live with their symptoms for small—often the size of a debilitating health problems, nervous system that can lead
poppy seed—so many people including arthritis and serious to stiff neck, severe headache,
years, suffering in silence and undergoing a host of expensive
don’t even notice or remember neurological issues. paralysis of the face muscles
medical tests before receiving any answers.
being bitten. And, contrary to (Bell’s palsy), nausea and
This was the experience of Shelley Echtle, a ﬁbromyalgia patient, So, how do you get numbness, pain or weakness
popular opinion, less than
Power Over Pain Action Network Leader in Texas, and advocate Lyme disease? of the limbs. If the bacteria
60% of those infected develop
When an infected tick bites manage to creep into the
for the chronically ill. the hallmark circular “bull’s
you, bacteria known as central nervous system,
Ecthle, 49, began experiencing symptoms in her early 30s, but eye” rash—some may have
Borrelia burgdorferi can be patients may also experience
wasn’t diagnosed with ﬁbromyalgia until she was well into her another type of rash or no
transmitted into the skin, confusion, memory lapses,
rash at all.
40s. A mother of three and a widow, Echtle tried to keep her rapidly ﬂooding the poor coordination, mood
symptoms of pain, unexplained muscle weakness and poor sleep Another challenge is the lack bloodstream. From there, swings and other cognitive
under control on her own for over 10 years. of “Lyme literate” providers, the bacteria can lodge issues.
according to Pat Smith, themselves in different parts (continued on page 2)
Finally, when Echtle’s symptoms became unmanageable, she
sought medical care. A computer programmer at the time, Echtle
“One woman described what felt like a wooly caterpillar on ﬁre under her skin.”
began experiencing memory loss and difﬁculty concentrating, a
symptom of ﬁbromyalgia commonly referred to as “ﬁbro fog.” — Dr. Fallon
“There were times when I couldn’t even remember the most basic
aspects of my job,” she said.
Is it Lyme?
Over a span of four years, Echtle visited several doctors who tested Although most tick bites don't result in Lyme disease, it’s helpful to know what
her for conditions like multiple sclerosis, lupus and arthritis — to look for. Common symptoms, many of which mimic the ﬂu and other
each providing no real answers. diseases, may include:
• A skin rash, often resembling a bulls-eye
Echtle experienced the frustration that is common to so many • Fever
people with ﬁbromyalgia. • Headache
“I started • Muscle pain
questioning • Stiff neck
myself. Am I • Swelling of knees and other large joints
really sick? Am I
just tired or lazy?
I became very
depressed,” she MAKE A DIFFERENCE IN 2009!
says. Help us strengthen our collective voice to improve pain care in America.
Eventually, How? Encourage NINE friends, family members, co-workers or caregivers
through a process who you know are affected by pain—acute or chronic—to join APF’s
of weeding out
efforts. Membership is free and offers access to up-to-date information
and performing a about pain and its management and support for those who are suffering.
tender point • Print nine copies of APF’s brochure at www.painfoundation.org, under
the Publications tab.
(there are 18 locations across the body where patients with
ﬁbromyalgia usually feel pain when pressure is applied), Echtle’s • Provide an addressed envelope to the American Pain Foundation to help
healthcare providers diagnosed her with ﬁbromyalgia. make it easy for others to join.
(continued on page 3)
American Pain Foundation
201 N. Charles Street ORG.
Suite 710 U.S. POSTAGE
Going the Extra Mile, Helping Hands..........3 Baltimore, MD 21201-4111
The Pain Down There ...................................4 STAY TUNED for our next issue…
Fast Facts & Volunteer Corner.....................5 • Taking Charge: Obtaining your
Listening to Your Favorite Tunes May medical records and protecting
be Just What the Doctor Ordered...............6 your care
Ask a Nurse...................................................7 • Gender Matters: Why Women Feel
Top 10 Tips for Coping with Arthritis..........8 More Pain
Frequently Asked Questions....................9 • Back to School Immunizations:
POPAN: From the Field...............................10 Easing Kids' Pain
Resources....................................................11 • Fast Facts on Neck and Shoulder Pain
Lyme Disease (continued from page 1)
Lyme-related Pain without closing their eyes or PREVENTING LYME FROM THE START
A study in the December 2008 wearing multiple layers of
issue of the Journal of Arthritis sunglasses, or they may have a If you and your loved ones enjoy spending time outside, the LDA recommends that you get tick smart.
and Rheumatism found that heightened sense of hearing so
• Check yourself for ticks, and don’t forget your pets too. If you ﬁnd a tick, it’s important to remove it properly to
most patients with chronic that normal sounds are much avoid increasing the risk of infection. Use pointed tweezers as close to the skin as possible and pull the tick
Lyme disease report associated more irritating or confusing, or straight out. Never squeeze the tick’s body because you can accidently inject harmful organisms into your body.
pain. They are also likely to be more sensitive to touch so And never put any substance on the tick to try to get it to back out.
experience fatigue, difﬁculty that skin sensations, let’s say • Choose light-colored clothing to help you see ticks more easily. Put clothes in the dryer for 35 minutes to kill
concentrating and sleep clothes on your body, might any ticks on them upon return from the outdoors.
disturbance—all vicious parts become very uncomfortable.”
• Wear long-sleeved shirts and long pants that can be tucked into your socks so ticks can’t crawl up your legs.
of the pain cycle. Challenges to Adequate • Try to walk in the center of trails to avoid overgrown grass or brush.
“I’ve had patients describe it as Treatment • Become an informed consumer. Learn about products, including insect repellents containing 10% to 30% DEET
a deep boring pain almost as if The standard treatment for (N,N-diethyl-meta-toluamide) or Permethrin-based products that can be used on clothing before wearing them.
it’s in their bones,” said Brian Lyme disease based on one set Always follow cautions and directions on the product label and when using repellents be careful not to apply
Fallon, MD, director of the of professional guidelines from too much.
Columbia Lyme & Tick-Borne the Infectious Disease Society of
Diseases Research Center at America is generally 3 to 4 For more information or to ﬁnd a “Lyme literate doctor,” visit the LDA at www.lymediseaseassociation.org
Columbia University, which weeks of antibiotics. A second
opened in April 2007 to better course may be recommended if
understand the occurrence and the patient relapses or
treatment of chronic persistent symptoms persist. The problem hard to document evidence of The Search for Answers some patients have a strong
symptoms. “Patients can also with this approach, according remaining infection in the Research is underway to ﬁnd proinﬂammatory response and
get odd sensations. One to Dr. Fallon and Smith, is that joints in these patients, which strategies to treat persistent are able to ﬁght off and kill the
woman described what felt like a short course of antibiotics has been problematic, explains symptoms other than bacteria. Others might have a
a wooly caterpillar on ﬁre alone will not help the Dr. Fallon. prescribing more antibiotics. strong proinﬂammatory
under her skin.” minority of patients who suffer
“There remains a response that never stops and,
Experts say it’s reasonable to signiﬁcant, persistent health “We need a much more therefore, causes ongoing
problems related to this misconception among some comprehensive approach to
believe that some patients with symptoms even after bacteria
infection. health professionals that Lyme helping people with chronic
chronic pain syndromes has been cleared. Still others
disease is easily cured and that persistent symptoms, including
associated with Lyme disease “Most people now acknowledge might not have a strong
anyone who has persistent pain,” Dr. Fallon said. “These
may develop a heightened that Lyme disease can cause enough response and may not
symptoms has some other might include anti-depressants,
activation of the pain severe neurological problems be able to eliminate organism
problem unrelated to the Lyme hypnotherapy, biofeedback
pathways, sensitizing them not and pain if untreated,” said before it gets lodged deep in
disease,” said Dr. Fallon. “And and more formal evaluation of
just to one type of pain, but Smith. “Many treating tissue.
when you have someone who other problems that may have
multiple types of pain. This physicians and patients feel was perfectly healthy until age developed.” “This work is very promising
means that otherwise mild that small amounts of the 35 and all of a sudden they get and addresses the logical
symptoms might be perceived organism may be left, causing In Sweden, researchers are
a well documented case of assumption that as human
as abnormally intense, the ongoing symptoms, studying why some patients
Lyme disease and for the next beings our genetic variability
problematic or distressing for a perhaps by triggering an develop chronic persistent
10 years they’re struggling with plays a role in our immune
patient with a history of Lyme immune cascade.” symptoms, while others clear
pain, fatigue, parathesias, responses,” says Dr. Fallon.
disease, or for those with other the infection very quickly. This
The immune system, in maybe some cognitive “Most patients do well in
pre-existing pain conditions promising area of research is
producing inﬂammatory problems…to say that’s a clearing the infection. But,
like ﬁbromyalgia. looking at genetic variables in
markers, can contribute to different illness just doesn’t even if 10% go onto develop
“There are a fair number of make logical sense. Ongoing patients’ initial immune problems that can last for
painful symptoms. For
patients who do develop what I symptoms may no longer be response against the Lyme- several years, that’s a large
example, there have been a
call sensory hyper-arousal,” due to persistent infection, but inducing bacteria that may number of people and lots of
number of studies of Lyme
said Dr. Fallon. “For example, to say it’s no longer related to help predict who is going to disability given the high
arthritis, which can be
they may have trouble going the initial Lyme infection develop chronic symptoms and prevalence of Lyme disease in
profoundly painful and
outside in normal daylight seems odd.” who will not. For example, the community.”
debilitating, yet it’s been very
PAIN COMMUNITY NEWS LYME TRUTHS
SPRING 2009 • Lyme disease can affect the
skin, joints, nervous system
American Pain Foundation Will Rowe and other organ systems.
201 North Charles Street, Suite 710 About 10-20% of untreated
Baltimore, Maryland 21201-4111 patients will develop chronic
firstname.lastname@example.org arthritis that lasts a lifetime.
www.painfoundation.org • Not all deer ticks are infected
Dear Friends: with the bacteria that cause
Editor the disease. They are called
Amanda Crowe, MA, MPH Too often people living with pain face an uphill battle. Many endure a prolonged period before
deer ticks because they
diagnosis and may not receive adequate pain management. usually feed and mate on
As you’ll read in this issue, this is particularly true for people with ﬁbromyalgia and pain deer.
associated with chronic Lyme disease. In fact, many providers have difﬁculty discerning between • Lyme disease is most
Contributing Writers the two conditions; complicating matters, those with ﬁbromyalgia tend also to have other common among people who
Micke Brown, BSN, RN conditions, including chronic fatigue syndrome, arthritis, lupus and irritable bowel syndrome. live in Northeastern, Paciﬁc
Chris Mullikin, RNC, MHS Whether it’s from an injury, degenerative disease or other conditions like diabetes, cancer or Northwest and Northern
stroke, pain is often part of the picture, yet we continue to fail people with pain when it comes to Midwestern states.
relieving suffering. Pain is also the leading reason American adults turn to complementary and • Ticks are generally found in
alternative therapies, which you’ll read on page 7. areas where there is leafy
material or other ground
Pain Community News is published For this reason, we must work together to improve the understanding, assessment and treatment cover; lawns that border
quarterly by the American Pain of various pain conditions. Our country desperately needs national pain care legislation. As of this woods or ﬁelds, typically
Foundation, the nation’s leading along pathways waiting for
writing, the United States House of Representative’s Energy and Commerce Committee has
independent non-proﬁt 501(c)3 low lying vegetation.
organization serving people with pain. adopted the National Pain Care Policy Act of 2009 (H.R. 756). The legislation is currently pending
Our mission is to improve the quality of the full vote of the House, and has now been introduced in the U.S. Senate thanks to the efforts of • If you don’t notice the
life for people with pain by raising Senator Orrin Hatch (R-UT) and Senator Christopher Dodd (D-CT). “hallmark” bull’s eye rash,
public awareness; providing practical you could still be infected;
information, education and support; One component of this bill is to increase the knowledge, training and skills of healthcare providers less than half have of people
advocating to remove barriers and to appropriately assess and treat pain. Currently, 120 organizations have joined forces with us to infected actually have it.
increase access to effective pain support the re-introduction of this legislation by signing a consensus statement and urging for its
• Ticks can be the size of a
management; and, promoting research. swift passage. poppy seed—so most people
This publication is provided for To all of you who have already taken ACTION, great work! To those who are not yet involved, join don’t notice or remember
educational and informational purposes getting bitten.
only. APF is not engaged in rendering
us! Visit our online advocacy center to get involved and/or to support the Pain Care Policy Act at
medical advice or professional services www.painfoundation.org. There is power in numbers. • More likely to get bitten
and this information should not be April through November,
used for diagnosing or treating a health although with climate
problem. APF makes no Warm regards, changes the tick population
representations or warranties, appears to be changing, so
expressed or implied. this may be becoming a
E-mail change of address information
year-round health threat.
to email@example.com or by mail Will Rowe
to American Pain Foundation, 201
Chief Executive Ofﬁcer
North Charles Street, Suite 710,
Baltimore, Maryland 21201-4111.
Fibro’s Impact (continued from page 1)
For Echtle, learning she had away, I lost a huge part of my membership grew from nine to of us, but it’s not us,” she says. psychological problem,” she says.
ﬁbromyalgia was a mixed identity.” 300 in just one year. They hold Echtle, now remarried and a She hopes that her advocacy
blessing. “I was very thankful As with many chronically ill monthly lectures, social events grandmother, ﬁnds her greatest efforts, on behalf of APF and
that I ﬁnally had an answer patients, Echtle went through a and participate in advocacy source of support in her family, through her support group,
and some validation,” she said. process of redeﬁning herself efforts to promote ﬁbromyalgia faith and a trusted team of along with a growing body of
“But then, when I learned there within the limitations of her awareness. Support group healthcare providers. She ﬁnds scientiﬁc research, will result in
was no cure, I went through a condition. She started small, members also go to medical relief through medications, more awareness and consensus
period where I became looking at the things she still had appointments with one another, acupuncture and water therapy. within medical community that
frightened as to what the future like her family and a love of and help out with other tasks. will lead to better care for
held for me.”e information on Echtle has also implemented
poetry and music, before Because there is currently no something she calls the 20/30 patients.
The physical and cognitive deciding to pursue a new path as laboratory test available to rule. For every 20 minutes of
limitations imposed by an advocate for the chronically diagnose ﬁbromyalgia, Echtle activity, she follows with 30
ﬁbromyalgia have affected her ill. urges patients to visit their minutes of rest. This allows for a
family, friendships and once- Echtle is now director of the healthcare providers well-armed little over three hours of For more information on
active lifestyle, and have forced North Texas Fibromyalgia with information about their productivity each day, something ﬁbromyalgia, visit the
her to give up the career that she Support Group. She attended her symptoms, their medical history that’s not always easy for those National Fibromyalgia
loved. ﬁrst meeting in 2007 where and knowledge of the latest living with ﬁbromyalgia. Association at
The decision to stop working was another member recognized her research in ﬁbromyalgia. www.fmaware.org.
There is much work to be done to
a traumatic one for Echtle. “I was natural leadership ability and She encourages patients to take educate healthcare professionals
always proud to say I was invited her to take on more control of their care and not on ﬁbromyalgia. “A lot of them
professional, self-sufﬁcient and responsibility. Under Echtle’s deﬁne themselves by their still don’t realize it’s a real
intelligent, and when that went direction the group’s disease. “Fibromyalgia is a part disease…they think it’s a
Going the Extra Mile, Helping Hands Awardees Honored
APF, in partnership with the National Fibromyalgia Association (NFA), recently announced the winners of the “Helping Hands: Making a Difference in
Fibromyalgia” Awards, in recognition of healthcare professionals who have made a signiﬁcant difference in the lives of people with ﬁbromyalgia. Each recipient has
devoted time and energy to becoming skilled in managing this complex, central nervous system disorder.
“I was so touched when reading the nominations. It was obvious that caring for people with ﬁbromyalgia is much more than a job to these health professionals,”
says Rebecca Rengo, MA, MSW, who served on the APF selection committee. “They put their hearts and souls into what they’re doing. They are so busy, yet
collectively they spend countless hours educating community groups about ﬁbromyalgia, starting support groups, working with other care providers to ensure more
holistic care is available and so much more.”
More than 200 nominations were received from patients around the country. The six winners selected for the 2008 Helping Hands Awards are:
Eugene Gosy, MD Karen Kowal, RN Jerome Lerner, MD Laura Mason, PT Daniel Sherwood, MD Sheldon Solomon, MD
Neurologist Pain Management Nurse and Pain Management Specialist Ottawa, IL Family Medicine Internal Medicine, Rheumatology
Williamsville, NY Massage Therapist Franklin, WI Shell Knob, MO Voorhees, NJ
Local celebrations for the award winners are being conducted in their home communities to honor these outstanding healthcare professionals.
This program was supported by a sponsorship from Pﬁzer, Inc.
Online Guide to Fibromyalgia
APF to publish book, “EXIT WOUNDS” coming soon…
APF, with sponsorship from Forest
Laboratories, will soon launch an online Hundreds of thousands of troops will be returning from the wars in
guide to Fibromyalgia including: Iraq and Afghanistan over the next few years, many of them in
acute pain and facing the possibility of a lifetime of chronic pain.
• Fibro Basics
• Tips for Finding Experts and Talking with “EXIT WOUNDS”—soon-to-be-released—tells the story of how one
Your Healthcare Provider man, with the aid of his family, “locked on” to a mission to survive
and thrive despite near death and limb loss.
• Beating the Blues: Easing Depression and
Anxiety The book and its companion website will provide information
• Living Well with Fibro: First Steps for Coping about:
• Unraveling Fibromyalgia: New Directions in • Acute and chronic pain syndromes afﬂicting veterans
Research and Advocacy • Risks of co-morbidity of physical and psychological pain
• Commonly Asked Questions & Answers • Importance of treating acute pain quickly, before it becomes
This will also include Is Fibromyalgia to Blame?, • Treatment options, including medications, surgical/implant
a self-assessment tool to help consumers procedures, complementary therapies, and other interventions
recognize symptoms and talk with their
• Strategies for self-advocating for optimal pain care
providers about ﬁbromyalgia, as well as a
listing of resources, including those from the • Medical resources for pain management, both inside and outside
National Fibromyalgia Association. the VA system and their role in assisting recovery
Check APF's website, www.painfoundation.org, Stay tuned to buy your copy…
in late April.
THE PAIN DOWN THERE Pain & Intimacy Series
“He didn’t see a cast on my arm or a bruise
on my shoulder…my pain wasn’t visible,
and I sometimes wondered if he thought I
was making it all up.”
t may be an embarrassing topic, This may be due, in part, to residual and physically to be happy and feel sexy or healthy because of the
but for the one in ﬁve women who fear that any sexual contact will fulﬁlled. constant pain.
suffer with vulvodynia—pain in the reintroduce the pain and the need to Another fear that plagues women with And professional help and resources
vulvar area—the limitations pain break habits of avoidance. Many vulvodynia is that they won’t get are available. Certiﬁed sex therapists
imposes on physical intimacy can be a women are also left with little to no pregnant—they either mistakenly work in collaboration with a patient’s
frequent concern. libido. A woman may need to learn believe the pain is a sign that their obstetrician/gynecologist, pain
how to restore gender identify by body isn’t working the way it should or management specialist, physical
“Chronic pain, in general, affects
reconnecting with her genitals and it becomes a logistical challenge therapist and other health providers to
sexuality, and its effect is even more
resolving issues related to self- because they cannot engage in devise individual treatment plans that
prominent when women experience
acceptance and her capacity to express intercourse itself or need to stop taking address concerns. Depending on
pain in the vulvovaginal area,” said
love as a full, intimate partner. pain medications before getting whether it’s vulvodynia or another
Christin Veasley, associate executive
director of the National Vulvodynia For these reasons, vulvodynia experts pregnant. painful condition, treatment may
Association. “It’s a hidden concern encourage women to continue One woman, married 17 years, include medication in combination
that greatly affects peoples’ lives, yet engaging in some form of sexual remembers what it was like. She feared with counseling, relaxation
it’s not frequently discussed.” intimacy. not being able to get pregnant and techniques, biofeedback, and pelvic
“While women shouldn’t feel said the irony was that to do so she ﬂoor or kegel exercises to help women
Pain may impose limits on sexuality
obligated to have intercourse if it’s had to stop taking the antidepressants learn how to have control over
painful, stopping intimacy altogether that ﬁnally helped get rid of the pain. muscles, among other approaches.
• Pain itself
can lead to rejection, loss of desire for “There were times that I couldn’t even “As with other pain conditions, a
• Other co-morbidities or
both partners and resentment. This sit, the pain was so bad, and I was so multidisciplinary approach is
consequences of unrelieved pain
can further separate the couple, scared I wouldn’t be able to conceive,” essential,” said Veasley. “Women
(for example, fatigue, anxiety or
leading to even more changes in their said Sally*, who suffered with typically ﬁnd that combining several
relationship. Sadly, we’ve heard from vulvodynia for seven years, and now different therapies is most successful in
• Reduced sex drive/functioning or many women whose relationships treating their physical pain, as well as
other side effects (for example, has two children. “The worst part is
have ended,” said Veasley. “For many, that it was in a part of the body that its effects on their social and sexual
constipation and associated pelvic intercourse may be off limits for a well-being.”
discomfort, weight gain) of certain deﬁnes me as a woman. In the years I
period of time until a woman’s pain suffered, desperately trying to ﬁnd For Sally, it’s been a long struggle and
pain medicines or combination of lessens, but there are many other
medicines relief, my husband was angry and at points she wanted to give up, but
forms of sexual intimacy for couples to grief-stricken at the loss of what a man she kept plugging along. “I wanted to
• Fear or anticipation of pain with explore.” be part of ﬁnding a cure,” she said.
“And part of that is raising awareness.
• Lack of self-esteem and body image “The problem is that avoiding intimacy after developing vulvar We can talk about migraines, back
issues symptoms can lead to a sustained decrease in sexual activity, pain and even breast infection, but not
• Feelings of shame, guilt or even after the pain itself has been successfully treated. That is, when it’s the vulva or other sexual
resentment due to reduced sex drive organ, and that needs to change.”
even when pain improves, women tend not to return to same
or history of avoiding sexual activity
level of sexual functioning,” — Chris Veasley
A common misperception among
patients and healthcare providers is
that by treating vulvodynia-associated Vulvodynia and other pain conditions hopes for in a marriage…ﬁnally In addition to vulvodynia, there are
pain alone—without addressing its related to the reproductive system can ﬁnding the right partner who is many other conditions that cause pain
impact on sexual functioning or a also do a number on a woman’s self- available, and now pain stood in in or around a woman’s reproductive
woman’s interest in engaging in sex— esteem. Many believe they are our way.” organs. For example:
physical intimacy will spontaneously “damaged goods,” and are either She says that it became an ongoing • Endometriosis in which the tissue that
improve. The danger is that couples guilt-ridden that they can’t perform for cycle in which she feared his touch lines the uterus grows outside of it —
will often begin down a path of their partner or, if single, terriﬁed they would trigger the constant burning, usually in the abdomen on the
complete avoidance of all sexual won’t ﬁnd someone who will want to and he worried too. And they are not ovaries, fallopian tubes, and
contact or the woman may reluctantly be with them. alone. Many partners say they are in a ligaments that support the uterus;
give into her partner (not wanting to “Women shouldn’t feel ashamed,” no-win situation in which they either • Fibroids are growths of tissue that are
turn the person down), perhaps said Veasley. “The reality is that many feel rejected or if they initiate sexual usually found in the wall of the
unknowingly conditioning herself to partners are open to other forms of activity—even gently—they fear their uterus;
associate sexual activity with pain. intimacy and may even welcome new advances may be seen as insensitive. • Interstitial cystitis is pelvic pain,
Experts say it’s critical to treat pain and sexual activities. An important “When I didn’t feel like making love pressure, or discomfort related to the
and sexual functioning at the same ﬁrst step is to start talking about it.” he’d take it personally,” she said. “He bladder typically associated with
time, and early on.
Experts encourage couples to didn’t see a cast on my arm or a bruise urinary frequency and urgency;
“The problem is that avoiding incorporate other, creative alternatives on my shoulder…my pain wasn’t • Pelvic inﬂammatory disease is an
intimacy after developing vulvar that are less likely to hurt, whether it’s visible, and I sometimes wondered if infection of a woman’s reproductive
symptoms can lead to a sustained cuddling, holding hands, massage, he thought I was making it all up.” organs a common and serious
decrease in sexual activity, even after kissing or trying different, more complication of some sexually
the pain itself has been successfully Sally strongly encourages couples to
comfortable sexual positions. This transmitted diseases, especially
treated. That is, even when pain communicate on an ongoing basis,
means “reframing” the way they Chlamydia and gonorrhea.
improves, women tend not to return to and ﬁnd ways to please one another
express intimacy and talking about even when the woman isn’t feeling
same level of sexual functioning,” what each person needs emotionally
Veasley explained. *Patient’s name has been change to Sally
to respect her privacy.
WHAT YOU CAN DO TO RESTORE PHYSICAL INTIMACY
Here are some important steps to help restore physical intimacy. • Think of and incorporate other alternatives whether it’s through touch
• Carve out time to express your love. It may seem too planned, but it works. (cuddling, holding hands, massaging and kissing), self-stimulation (for added
excitement or to simply watch if you can’t be active), oral sex, trying different,
• Talk with and listening to your partner to express your needs and voice more comfortable sexual positions or sharing sexual fantasies.
concerns; be open in telling him or her what feels pleasurable and what hurts.
• Commit to advocating for optimal pain relief—agree to a plan that addresses
• Make a dedicated appointment with your healthcare provider to talk about the interrelated physical, emotional and spiritual pieces of the pain puzzle.
how your condition is affecting your sexual function, many medications can
reduce your ability to get or stay aroused. • Keep a pain and symptom diary to track what times of the day your pain
tends to spike or worsen (Download APF’s Targeting Chronic Pain Notebook at
• Consider asking for a referral to a qualiﬁed couples’ counselor or sex therapist. www.painfoundation.org ).
• Try relaxation and energy conservation strategies.
Fast Facts on Vulvodynia is chronic pain of the vulva—the external female genital organs. About one in ﬁve will suffer with
chronic vulvar pain at some point in their lives. If untreated, vulvodynia can greatly interfere with a woman's
Vulvodynia daily activities, intimacy with her partner, and general self-esteem and body image.
Women living with this condition report swab to place pressure on various parts of
THE MOST COMMON DESCRIPTORS OF
burning, stinging, irritation and rawness VULVODYNIA ARE: the vulva to locate the pain and determine
in the vulva area that lasts for at least • Burning (most common) how severe it is.
three months or longer with no evidence of • Knife-like pain What Treatments are Typically
other possible causes such as infection, • Hot or scalding Recommended?
including sexually transmitted diseases, or • Sharp or cutting
• Raw or sore Self-care (see box to left) and treatments
for vulvodynia can help bring relief.
The pain associated with vulvodynia can Possible treatments may include
occur all the time or just once in a while. It medications, topical pain relievers, advice
may or may not be promoted by touch. Vulvodynia can impair a woman’s ability
on vulvar skin care, physical therapy,
For many women, the pain is often to have sex, exercise, socialize or work.
biofeedback, dietary changes and
triggered when pressure is applied to the Unfortunately, the intimate nature of this
counseling, among others. As with other
vulva area, either when inserting a pain condition makes it especially difﬁcult
pain conditions, a combination of
tampon, engaging in sexual activity, to talk about, even with a partner. Open
Self-Care Tips for Vulvodynia therapies usually work best and it varies
getting a pelvic exam, wearing tight- communication is important to prevent
from individual to individual.
• Wear 100% white cotton ﬁtting pants or during exercise, especially feelings of isolation, self-blame and
underwear. depression. Medications commonly used include local
bicycling or horseback riding.
• Wear loose-ﬁtting pants and skirts anesthetics, such as lidocaine, low-dose
and avoid pantyhose. Who’s at Risk? What Causes Vulvodynia? tricyclic antidepressants, such as
• Use plenty of water-soluble Women typically develop vulvodynia in We don’t know what causes vulvodynia, amitriptyline and desipramine, and a
lubricant during all sexual adolescence or young adulthood. While although a number of factors are thought newer class of antidepressants, known as
activity. this risk drops signiﬁcantly after age 35, it to play a role. These may include: SSNRIs. Anticonvulsants, topical
• Stay away from perfumed creams can occur in older women as well. • Nerve injury or irritation treatments and nerve blocks may also be
or soaps, pads or tampons, and recommended.
Research shows women with chronic • Recurrent vaginal
contraceptive creams or vulvar pain are seven to eight times more infections/hypersensitivity to yeast Physical therapy and/or biofeedback
spermicides. likely to report difﬁculty and discomfort techniques can help you strengthen or
• An abnormal response of different cells
• Rinse the vulva with cool water with ﬁrst tampon use, so this may predict in the vulva to environmental relax your pelvic and vaginal muscles,
after urination and intercourse. future risk of vulvodynia. These women factors,such as infection or trauma which can lessen pain and spasms.
Don't use douches or vaginal also tend to have higher levels of • Genetic factors that make the vulva Learning specialized relaxation and
wipes. inﬂammatory markers (e.g., interleukin-1 respond poorly to chronic inﬂammation breathing techniques helps to reduce
• Soak in lukewarm or cool sitz and TNF alpha) and lower pain stress and anxiety, which can intensify
baths. • Pelvic muscle spasms
thresholds. pain sensations.
• Keep the vulva clean and dry. How is it Diagnosed?
Studies are ongoing to investigate the Surgery to remove painful tissue in
Avoid staying in damp bathing To diagnose vulvodynia, the doctor will
association between vulvodynia and other women who have pain that is localized to
suits or exercise clothes.
conditions, including irritable bowel ﬁrst rule out other causes of vulvar pain, the opening of the vagina is another
• Refrain from exercises that are such as yeast or bacterial infections or skin
syndrome, ﬁbromyalgia and interstitial option. Surgery should be reserved for the
likely to place added pressure to conditions. A common test for vulvodynia
cystitis, a condition that causes recurring most severe cases, and only after other
the vulva, such as bicycling or is the cotton swab test in which a health
discomfort or pain in the bladder. options haven’t worked.
provider will use a moist, cotton-tipped
As always, talk with your doctor.
Sources: National Women’s Health Resource Center, National Vulvodynia Association
APF’s “Getting good pain care is a right.
VOLUNTEER No one should have to suffer like this.”
This Tough Cookie Isn't About to Crumble
Michigan Power Over Pain Action Network Leader
Jannie White is a tough woman who has worked hard at hard jobs for most of Jannie insists that her husband and three children not help her until she can’t
her life. Her work in manufacturing led to leadership positions such as being help herself.
named the Single Point of Authority, responsible for knowing state and federal
“People tend to think that pain is a mental problem, that it’s all in your head,
OSHA rules. In 2004, she was a press operator in Detroit when metatarsal safety
even in the medical ﬁeld,” says Jannie. She credits her faith and coping skills
boots with too much steel padding caused a bunion. Knowing the ins and outs
that she learned as a child to get her pain under control, but is hesitant to give
of safety in often dangerous situations, she never thought something like
too much credit to the medical community. Unfortunately, the doctors that
surgery for a bunion would bring her down.
Jannie feels have believed her have been too few. “Good doctors have a
“The day after my surgery, I woke up with cutting, stabbing burning pain. The listening ear and a caring heart. I can tell they really care. I really stand up and
doctor removed my cast and my foot was swollen and as red as an apple,” she salute them.”
says. After more than a year of pain that did not go away, a foot specialist said
Jannie’s experience with pain led her to the American Pain Foundation’s Power
her bone had not healed properly and Jannie was left to suffer with Reﬂex
Over Pain Action Network, where she is Michigan’s state leader. She raises
Sympathetic Dystrophy (RSD).
awareness of pain issues through community events, a support group that she
RSD, which is also known as Complex Regional Pain Syndrome, affects between founded, and media outreach. She has also extensively worked with elected
200,000 and 1.2 million Americans. It is characterized by pain, swelling and ofﬁcials to educate them about pain issues, worked to get an RSD bill passed in
abnormal sympathetic nerve activity, which can cause intense burning pain. the state and secured state proclamations for September Pain Awareness Month
The pain is out of proportion to the injury, which, according to the American in 2008 and 2009. Jannie also volunteers with the RSD Association and the
Society for Surgery of the Hand, can sometimes be as minor as a paper cut or National Organization of Rare Diseases. “We have a right to change doctors, do
small bruise. Jannie describes her pain as a creeping sensation of a spider research, and ask questions. Getting good pain care is a right. No one should
moving back and forth with torches across her back, leg and foot. She tries to have to suffer like this,” Jannie says.
control her pain by staying in tune with her body, staying away from food and
drinks that do not make her well and keeping her stress level under control.
Listening to Your Favorite Tunes May be Just
What the Doctor Ordered
Research ﬁnds signiﬁcant improvements in physical and mental health following music therapy
Music is universal. It is said to (for example, cancer, pain disorders, relief, including pain and anxiety.
transcend all languages, and often sickle cell disease, AIDS, Interventions may include listening to
evokes strong emotions. Simply neurodegenerative disorders) to some music, getting patients to sing or play
listening to a few stanzas can form of music therapy for an average of an instrument or write songs. And
immediately take us back to speciﬁc 25-minute sessions. Most patients (70%) music therapy has been growing in
moments in our lifetime—graduations, did not have a musical background. popularity, as patients take a more
weddings, funerals and other poignant Physical and psychological tests were active role in their health care and
moments. And most of us have, at one conducted before and after the initial providers begin to integrate
time or another, turned to music as a therapy session. Data revealed that complementary and alternative
source of solace during trying times. patient-rated scores for anxiety, mood, therapies into overall treatment plans.
For people living with pain, especially pain, depression and shortness of “Our patient population is getting
those with chronic and/or advanced breath improved signiﬁcantly. younger due to better medical care;
illnesses, listening to music or learning “We found that individual symptoms diseases are being caught sooner, so the
to play an instrument may help ease such as anxiety, depression, pain, and style of music has changed,” explains
the aches and pains. In fact, a growing shortness of breath were clinically Gallagher. “It used to be gospel, big
body of research ﬁnds that music improved after music therapy band and jazz, and now it’s new
therapy can reduce pain, anxiety and intervention,” says Gallagher. “The country and alternative rock. My
depression—which often co-occur and great news is that patients don’t need repertoire has had to grow EXAMPLES OF MUSIC
can trigger a vicious cycle of needless any special training to appreciate or tremendously to meet patients’ needs.” THERAPY USED
suffering if unaddressed. beneﬁt from music as a form of In addition to working with the Horvitz • Listening to music
“I believe in the total pain concept; that therapy. And while this study looked at Center for Palliative Medicine at the
seriously ill patients, there is reason to • Singing alone or with therapist
is, there are physical, emotional and Cleveland Clinic, Gallagher’s services
spiritual components of pain,” says Lisa believe that most patients can reap the are increasingly requested in the • Engaging in clapping, humming,
Gallagher, MA, MT-BC, board certiﬁed rewards.” hospital, either by patients or through tapping foot, etc.
music therapist at The Cleveland Music She recalls one patient who reported her orders from treating providers. • Playing a keyboard, guitar,
School Settlement and the Cleveland pain to be an 8 or 10, and after the “I ﬁnd it very satisfying to know that I percussion instruments, etc.
Clinic in the Harry R. Horvitz Center for session she turned to Gallagher from made a difference in someone’s quality
Palliative Medicine. “Music therapy is her hospital bed and said: “The music • Music-assisted relaxation
of life and helped his or her symptoms focusing on breathing, muscle
powerful, and can address all of these took it all away.” Still, the duration of improve. I also hope to continue doing
areas.” the effect of music therapy is unknown relaxation, and/or imagery
research to further prove the beneﬁts of
Gallagher has been studying how music and more research is needed. music therapy,” Gallagher adds. • Writing song lyrics to original or
therapy can improve the mental and The therapeutic use of music is not new. familiar music
So, listen to your favorite music at
physical health of patients for more It’s been used in a variety of clinical home or in the car, pick up an
than 14 years. In a recent study, she settings (e.g., hospice, palliative care, instrument you’ve always wanted to
and her research team enrolled and during medical procedures or while learn and sing to your heart’s content
exposed 200 patients with a range of receiving radiation or chemotherapy in the shower. You just might feel better
chronic or advanced illnesses treatments), as well as for symptom because of it, even if for the short-term.
“Music can lift us up or calm us down. It’s readily available and comes in all shapes and sizes.
It’s low-cost and has no side effects.”
Gallagher with a former patient.
The Power of Music: Personal Notes from Andrea Cooper,
APF Board Member and someone who has endured chronic pain for many years
“As a musician, I know how transformative listening to (and making) music can be for people with pain. For a time, pain and suffering is forgotten, breathing is
easier and the music becomes a joyful messenger to the soul.
Music can lift us up or calm us down. It’s readily available and comes in all shapes and sizes. It’s low-cost and has no side effects.
When I’m singing, and there are harmonies hovering around the room, I can’t think of a single more effective painkiller. It’s like there’s a magical monkey wrench
that ratchets down the pain a few notches to where I can live with it, and at times not even notice it.
There’s something special that happens to people when they connect to the music. Suddenly, they are part of an experience outside of their personal suffering; part
of a greater experience that can be equally shared by everyone in the room; where they can enjoy the moment and not worry about pain for a little while.”
Chris Mullikin, RNC, MHS, is an independent
pain management consultant, currently
Ask a Nurse working as a pain management consultant to
the Maryland Board of Nursing. She retired
Chris Mullikin, RNC, MHS from Shore Health System in Easton, MD, in
2004 where she managed the Pain
Management and Palliative Care programs.
Q: What is Mindfulness Meditation and how do these approaches help Q: Are there certain individuals who seem to beneﬁt more?
relieve pain? A: Many individuals with chronic medical conditions can beneﬁt, and they are
A: The healing power of the mind has been identiﬁed and used since ancient often the ones in search of meditation and other complementary and
times. For a signiﬁcant number of individuals, "mind over matter" can be an alternative therapies. In my experience, meditation techniques are especially
effective part of the healing process. This mind/body concept is only growing in valuable when a speciﬁc cause for persistent pain cannot be identiﬁed; for
popularity among the public and within the medical profession. example, people living with low back pain, ﬁbromyalgia and migraine
Meditation falls into two categories: concentrative and mindful. Concentrative
meditation focuses a person's attention on a single sound, image or his or her We also know that people who are interested in being involved in their own
own breathing. The goal is to direct the individual to a state of calm and recovery respond well to meditation (and other complementary therapies)
heightened awareness. With mindful meditation, he or she remains aware of because it helps them regain a sense of control that has been taken away by
all sensations, feelings, thoughts, images and sounds, but doesn't focus on chronic pain or advanced illness. Those who have experienced unpleasant side
them. The goal is a calmer, uncluttered state of mind able to follow direction. effects from medication or conventional treatment can beneﬁt from additional,
complementary therapies as most are non-invasive and have few, if any, side
Meditation can have a profoundly positive affect on a person's overall health. It effects. If done correctly, many can be self-practiced and are low-cost.
reduces pain and stress by diverting attention away from negative stimuli. It is
thought to work through what is known as the "relaxation response”—the The use of meditation and imagery has been effectively used by many
body’s natural protective mechanism against overstress. Everyone has this individuals in a variety of medical settings from labor and delivery to the
response, it just needs to be released in some way. treatment of high blood pressure and heart-related problems. These therapies
have also been used in the treatment of depression and the side effects of
The effectiveness of meditation depends largely on personal participation. The chemotherapy.
individual needs to be able to be fully present in the moment. This can be
difﬁcult someone who lives with persistent pain. With meditation techniques, As always, talk openly with your healthcare providers.
people are taught to train their minds to travel to a place of calm and
For more information about complementary and alternative therapies,
peacefulness with the ultimate goal of relaxation. In addition to pain relief,
see the Spring 2008 issue of Pain Community News available at www.painfoundation.org.
these approaches have been found to reduce stress, improve mood and promote
You can also visit the web site of the National Center for Complimentary and
restful sleep. Meditation also provides a greater sense of control over an
Alternative Medicine at www.nccam.nih.gov.
individual's treatment outcomes and often enhances quality of life.
Complementary and Alternative Medicine Therapy
on the Rise, According to New Government Survey
Nearly 40% of adults aged 18 years and over and roughly 12% of children aged 17 years and
under use some form of complementary and alternative medicine (CAM), according to a new
nationwide government survey.
Adults used CAM most often to treat pain including back pain or problems, neck pain or
problems, joint pain or stiffness/other joint condition, arthritis, and other musculoskeletal
conditions. Adult use of CAM therapies for head or chest colds showed a marked decrease from
2002 to 2007 (9.5% in 2002 to 2.0% in 2007).
The most commonly used CAM therapies among U.S. adults are:
• Nonvitamin, nonmineral, natural products (17.7%)
Most common: ﬁsh oil/omega 3/DHA, glucosamine, echinacea, ﬂaxseed oil or pills, and
• Deep breathing exercises (12.7%)
• Meditation (9.4%)
• Chiropractic or osteopathic manipulation (8.6%)
• Massage (8.3%)
• Yoga (6.1%) 10 Most Common CAM Therapies Among Adults - 2007
Among children who used CAM in the past year, CAM therapies were used most often for
back or neck pain, head or chest colds, anxiety or stress, other musculoskeletal problems,
and Attention Deﬁcit/Hyperactivity Disorder (ADD/ADHD).
“These statistics conﬁrm that CAM practices are a frequently used component of
Americans’ health care regimens, and reinforce the need for rigorous research to study the
safety and effectiveness of these therapies,” said Josephine P. Briggs, MD, director of the
National Center for Complementary and Alternative Medicine (NCCAM). “The data also 8.60% 8.30%
point out the need for patients and healthcare providers to openly discuss CAM use to
ensure safe and coordinated care.” 6.10%
The survey, conducted as part of the 2007 National Health Interview Survey (NHIS), an 3.60%
annual study in which tens of thousands of Americans are interviewed about their health- 2.20% 1.80%
and illness-related experiences, was developed by NCCAM and the National Center for
Health Statistics (NCHS), a part of the Centers for Disease Control and Prevention (CDC).
ti o n ic ge a s n
The survey results are based on data from more than 23,300 interviews with American d u c th i n r act ssa Yo g ap i e ati o m en
P ro r ea d i ta ro p M a h er el ax Im a eat
r al ep B M e C h i ed T eR i d ed icT r
N D e t- b a
s ssi v G u ath
adults and more than 9,400 interviews with adults on behalf a child in their household. D ie gr e eo p
P ro H o m
FOR MORE INFORMATION ABOUT CAM THERAPIES OR A COMPLETE REPORT OF THE SURVEY RESULTS, VISIT WWW.NCCAM.NIH.GOV.
TOP 10 TIPS
FOR COPING WITH ARTHRITIS
Arthritis, in its various forms, is the most common cause of disability in the United
States, affecting over 40 million Americans, according to the Centers for Disease Control.
There are more than 100 different types of arthritis. Some are related to wear and tear of
cartilage (for example, osteoarthritis); others are associated with inﬂammation, often
resulting from an overactive immune system (for example, rheumatoid arthritis).
It’s no surprise that arthritis pain is a chief concern among patients. While there is no
cure for arthritis, there are many things you can do to help alleviate your symptoms and
improve quality of life. These can help with other pain conditions too.
1. Educate yourself. To cope, make sure you understand your diagnosis and work closely with your healthcare provider to develop the best pain
treatment plan for your speciﬁc type of arthritis. Stay up-to-date on the latest research and treatments for arthritis pain, ask lots of questions and
be sure your providers (primary care physician, rheumatologist, pain management specialist and others) are on the same page.
2. Take control. Studies show that people who actively manage their arthritis experience less pain and have fewer visits to the doctor. So, take
charge of your care.
3. Find the right medication and other strategies for pain relief. People with arthritis most often feel pain in the hips, knees, ankles and
other areas including the joints of the ﬁngers and spine. Fortunately, a wide range of medications are available to help alleviate these symptoms
including: analgesics, non-steroidal anti-inﬂammatory (NSAIDS) and corticosteroids to block inﬂammation and pain, and immunosuppressants
to help reduce inﬂammation and slow disease progression. Complementary and alternative medications such as ﬁsh oils and omega-3 fatty acids
are sometimes used to help combat inﬂammation. Talk with your doctor about which pain medication might be right for you.
4. Practice prevention. We often think of pain as something that must be managed rather than prevented. And while it may not be possible to
eliminate arthritis pain completely, there are many steps you can take to help stop pain before it starts. Practicing regular low impact exercise,
such as water aerobics or stationary cycling, eating a healthy diet, maintaining an appropriate weight, getting enough quality sleep, properly
taking prescribed medications, and making an effort to reduce the stress to your joints during everyday tasks can help keep arthritis pain at bay.
5. Kick the habit. Research shows that smoking can increase complications from certain types of arthritis. Smoking can also increase your risk of
osteoporosis and lead to longer post-surgical recovery. Quitting smoking can ease joint pain and also lowers your risk for many other diseases. If
you are a smoker, it’s never too late to quit. Talk to your healthcare provider or call1-800-QUITNOW for telephone counseling.
6. Get moving. To reduce joint pain and stiffness, try to avoid sitting or standing in the same position for long periods of time. If you’re working or
traveling, make sure to stretch and move around at least once an hour. Give your hands frequent breaks from writing or typing. Ask your provider
whether occupational or physical therapy may help you maintain your daily activity levels.
7. Don’t give up the activities you enjoy. When stiff, painful and swollen joints interfere with your ability to participate in all the activities you
once enjoyed, don’t give up! Look for ways to modify your favorite hobbies like cooking and sewing rather than eliminating them completely. As
Spring nears, remember that gardening can be great activity for maintaining joint ﬂexibility, bone density and range of motion. Devices like hand
braces and ergonomic gardening tools can help keep tasks from aggravating your arthritis.
8. Know your limits. Arthritis can often lead to muscle fatigue, weakness and energy loss, often making pain even worse. It’s important to
recognize and respect the limitations of your condition. Don’t take on too much. Rest when you are tired and learn that it’s okay to say “No.” Find
some quiet time each day to allow your body and mind to take a break and relax. By taking on less, you’ll ultimately be able to accomplish more.
9. Find support and accept help. Talk with trusted family members and friends about how you're feeling, especially when you're feeling
overwhelmed. And don’t be afraid to ask for help when you need it. Give your loved ones ideas for how they can support you. Connecting with
other people who have arthritis—whether through a support group in your community or online—will help you feel less isolated. To ﬁnd a local
support group, contact your local Arthritis Foundation, ask your doctor or nurse, or call area hospitals. You can also ﬁnd online support by visiting
PainAid, APF’s interactive web-based community at http://painaid.painfoundation.org.
10. Learn to laugh. While there’s nothing funny about arthritis, research shows that laughter can lessen pain, reduce anxiety and depression, and
alleviate the loneliness and anger that often accompany chronic pain conditions. Humor may also strengthen your immune system and help you
maintain an optimistic outlook. It’s not always easy to stay upbeat when you’re in pain, so, rent a funny movie, read a good joke or watch your
favorite stand-up comedian. Laughing—even when you feel like crying—may really be one of the best medicines.
While arthritis is a serious, often debilitating disease, it doesn’t have to control your life. Talk with your healthcare provider
about strategies for coping with your arthritis symptoms. With time, you'll ﬁnd what works best for you.
For more information about arthritis, visit www.arthritis.org.
Sources: National Arthritis Foundation, Arthritis Foundation, CDC, Mayo Clinic
AUTISM’S LINK TO PAIN
DID YOU Individuals with autism may have an altered response to pain. In fact, recent research using objective observational measures of pain and
KNOW? To date, few studies have occurred in this area, but children with autism distress shows that children with autism will display similar facial
reactions to pain as children without autism. This suggests that facial
are known to have problems interpreting their sensory experiences, which
could lead to an unusual reaction to pain. activity may be one way of assessing pain in autistic children who
frequently lack the skills to express their pain verbally or respond to
What’s interesting is that some people on the autism spectrum appear to standard pain assessment tools such as the FACES pain rating scale.
have very low pain thresholds, while others seem to be insensitive to pain.
Some may experience constant pain due to abnormal sensitivity to In some cases, chronic pain can be the initial presenting symptom for
sounds, sights and touch. Others may appear to feel no pain at all, which individuals with a previously undiagnosed autistic spectrum disorder.
could result in injury; for example, not knowing to pull away when Researchers say that an accurate diagnosis of autism can lead to a greater
touching a scalding oven or stepping on broken glass. understanding of the nature of the patient's pain and to more effective
The reason for these irregular responses is unclear, but some experts
believe it may be related to a disruption in sensory processing—that pain While there seems to be a clear link between autism and the experience of
is actually being felt, but not recognized or responded to in a typical pain, it’s not well understood and there are currently many differing
manner. theories. Future autism research may lead to a greater understanding of
the development and treatment of chronic pain disorders.
In addition, one of the more troubling symptoms of autism—the inability
to express and communicate feelings—may make matters worse. Often,
children who have associated language deﬁcits will communicate pain
through actions such as violent outbursts that may be misinterpreted as Sources: Autism Society; National Institute of Neurological Disorders and Stroke;
behavior problems, potentially masking the real issue and leading to the Messmer et al, J Autism Dev Disord, 2008; Nader et al, Clin J Pain, 2004; Bursch et
under treatment of pain. al, J Pain, 2004.
Frequently Asked Questions: When Opioid Medications Have Been
Prescribed for My Chronic Pain By Micke A. Brown, BSN, RN
If your doctor has recently prescribed an opioid as part of your pain management
plan, you probably have questions. You may have heard terms such as “pill counts,”
“urine drug screening,” “therapeutic switching,” and “risk management plans”
among others, and it can be difﬁcult to make sense of it all.
Read on for answers to some common questions.
Q: I’m reading more about opioid prescribing and risk Combined with informed consent, a treatment Q: I’ve been told that I have personal responsibilities that
management plans on the Internet. Can you explain how agreement can be used to further map out agreed should be understood when agreeing to take an opioid
this affects me, a person with pain, who needs opioids on a upon goals for a therapeutic opioid trial. The prescription regularly. Can you elaborate?
regular basis? prescribing and the taking of opioids carry
A: Safe opioid prescribing is a major concern for those responsibilities that should not be taken lightly. A A: At the present time, having access to opioids for the
who treat pain. Because these medicines carry the treatment agreement should include expectations treatment pain is not a right in our society; it is a
potential for abuse, clinicians who treat pain with and obligations of both parties: your treating privilege. Misuse, abuse and diversion of prescription
opioids must be licensed in the state and are required practitioner and you. A carefully worded treatment opioids have gained national attention as a public
to follow accepted principles of prescribing and agreement helps to clarify responsibilities and aids health concern and social burden. Each of us has a
minimize the risk of misuse, abuse, addiction, and with the early identiﬁcation and intervention should responsibility not to be part of that problem, at the
diversion. potentially problematic behaviors arise, such as using same time, we must protect access to appropriate and
multiple prescribers or pharmacies. This agreement legitimate treatment of pain. This responsibility
Increasingly, pain specialists and other prescribers are should be clearly stated in writing. Some practices use begins with the prescriber (your healthcare
adopting risk management plans, which have been a verbal agreement that is documented in the professional), extends to the dispenser (your
encouraged through state regulations and policies medical record. pharmacy and licensed pharmacist) and continues
and by pain organizations, including APF. with the recipient of that opioid prescription—YOU.
Q: What is the difference between urine drug screening and
Proper risk assessment may help: Before you agree to take this medication:
urine drug testing/monitoring?
• Maximize therapeutic outcomes through the • Be informed about how it works to relieve pain and
A: Urine Drug Screening is commonly used by
development of tailored, detailed treatment plans. improve function
employers or law enforcement to detect illegal drugs
• Minimize risks such as misuse, abuse, addiction, and sometimes prescription medications that have • Know when and how to take this medication
and unintentional overdose. not been prescribed by a healthcare professional for • Know if other medications (including over the
• Reduce the likelihood of diversion by those an existing health condition. counter and herbal remedies) or foods can interfere
prescribed opioids. Urine Drug Testing (UDT) is a monitoring tool, and with the desired effects
For patients who are prescribed opioids, time during ofﬁce should be a consensual diagnostic test, meaning that • Know your risk for misuse, abuse or addiction
visits may now include: patients are fully aware of its use in improving and history (including alcohol and tobacco); Report it
tracking treatment. It can be used to: with honestly
• Completing new pain assessment forms and
questionnaires that ask about your past or family • Provide objective documentation of adherence to • Tell your healthcare provider if any family
history of substance abuse the agreed-upon treatment plan members or anyone in your household has the risk
• Identify unreported drug exposure of misuse, abuse or addiction. A different
• Reviewing treatment options, as well as your right
• Aid in the diagnosis and treatment of the disease of medication or form of that medication may be
to accept or reject recommendations based on a
addiction or drug misuse, if present recommended.
review of the risks and beneﬁts
• Reviewing and signing of an opioid treatment • Help advocate for the patient in family and social Once you agree to take this medication:
agreement with your pain care provider, which issues • Have the same healthcare professional who helps
may set certain guidelines (for example, that you manage your pain write or call in the
It’s important that there is honesty and trust between
opioids only be prescribed by one provider, use of prescription each time; if an opioid for a separate
you and your healthcare professional when using
only one pharmacy, schedule for routine ofﬁce problem is recommended by another clinician--
UDT. Who and how the urine sample is handled
visits, possible use of urine drug monitoring or pill clear it with the one who manages your pain ﬁrst.
must be protected to ensure reliable results and
counts) • If a medication that can make you drowsy is
interpretation of ﬁndings. Your healthcare
professional must should work with a reliable testing recommended by another clinician-- clear it with
Q: What does good opioid management typically involve?
laboratory to help to accurately interpret UDT results. the one who manages your pain ﬁrst.
A: Your provider should do the following:
Inappropriate interpretation of results, as with any • Select one pharmacy at which your opioid
• Conduct a thorough medical history and complete other diagnostic test, may adversely affect your care; prescription will be ﬁlled every time; ideally use
physical exam and keep accurate records. for example, the premature or inappropriate only one pharmacy for all of your medications so
• Establish a diagnosis. discharge from the practice when prescribed drugs are that a medication proﬁle can be maintained and
• Screen for psychosocial issues, including substance not detected and the over/under-diagnosis of reviewed.
abuse and mental illness. medication/substance misuse, abuse or addiction can • Understand the common side effects and report
• Create a treatment plan that clearly states the occur. them if they persist or become problematic.
treatment objectives that will be used to determine • Keep your opioid medications locked and safe—
Q: What is the purpose of a [medication] pill count?
therapeutic success; this should also include away from young children or others who they are
transition planning when opioid use is considered. A: You may be asked to bring your prescription not intended for—invited or uninvited guests in
medicine bottle(s) with you to your ofﬁce visits. The your home, family and friends.
• Discuss the risks and beneﬁts of using controlled
remaining medication is counted, subtracted from the
substances as part of informed consent and • If part or all of your prescription supply is stolen or
total amount dispensed at the pharmacy and
treatment agreements. comes up missing, do not be ashamed to report it—
reconciled with the amount allowed to be taken each
• Periodically review the course of pain treatment even if you suspect a loved one—covering it up will
day. If a discrepancy is found, whether too much is
and any new information about the cause of the only cause more pain and suffering for you and
gone or not enough has been taken, a discussion
pain or your general health. others.
should follow to ﬁnd out why. If there are repeated
• Providers should be willing to consult with other instances where pills are missing or not being taken,
providers or refer you to specialists, if needed. this may be cause for concern.
Following these steps helps to document and protect Reviewing your medication at each visit gives your
the provider and patient, and helps ensure the best provider important information, and may prompt
treatment outcomes and integration of care. him or her to make adjustments to the pain Resources
treatment plan, perhaps by: Toombs,J.D., “Commonsense Opioid-Risk Management in
Q: Is an opioid agreement the same as informed consent?
• Changing the amount of pills in each prescription Chronic Noncancer Pain”, Available online Feb 09: http://pain-
Are prescribers legally required to have both in place? topics.org/pdf/OpioidRiskMgmt.pdf.
• Switching to another opioid medication
A: No. Getting informed consent is required by laws Federation of State Medical Boards, “Model Policy for the
that regulate medical care. Your healthcare • Increasing ofﬁce visits to allow for closer Use of Controlled Substances for the Treatment of Pain,
professionals must give you information about a monitoring Available online Feb 09:
proposed treatment plan or test, including the • Assessing the home environment http://www.fsmb.org/pdf/2004_grpol_Controlled_Substances.pdf
anticipated risks and beneﬁts, so that you can decide • Transitioning off opioids Gourlay, DL., Heit, HA., “Universal Precautions in Pain
whether or not you wish to undergo such treatment Medicine…” Available online Feb 09:
• Specialty referral, if addiction or psychological http://www.medscape.com/viewarticle/503596_1.
or test. The risks and beneﬁts of opting for no behavior is a concern Gourlay, DL., Heit, HA. , Caplan, YH., “Urine Drug Testing in
treatment should also be included.
Clinical Practice” Available online Feb09:
As with any highly regulated medication, like
opioids, you should verify that the amount your
prescription allows is the same amount that is
dispensed by your pharmacy.
FROM the FIELD
Power Over Pain Action Network – News Updates & Actions YOU Can Take!
POPAN leaders are hard at work, helping to inform various stakeholders—government ofﬁcials and community
leaders, health policy makers, healthcare professionals, reporters and the general public—about the under treatment
of pain, as well as the urgent steps that must be taken to improve pain assessment and management and help
ensure every American has access to the best treatments possible.
Whether it’s through presentations to community groups, media interviews with local and national newspapers,
radio and television outlets, or one-on-one meetings with Congressional Representatives, advocates are spreading the
Pain Policy Efforts Bearing Fruit
POPAN leaders and advocates are involved in a broad range of advocacy efforts aimed at addressing barriers,
removing harmful pain policies and promoting policy and practice that improve the quality of care for those who are
in pain. One effective strategy has been to encourage State Medical Boards to adopt the Federation of State Medical
Board’s (FSMB) Model Policy for the Use of Controlled Substances for the Treatment of Pain, which has been a valuable tool
for improving the quality of and access to appropriate pain care. (For more information, visit
The Power Over Pain POPAN Leader Kaye Norris, PhD, and the Montana Pain Initiative led the charge in that state, which resulted in the
Montana Board of Medical Examiners unanimously adopting the FSMB’s Model Pain Policy.
Through the tireless efforts of Massachusetts (MA) POPAN Leader Cindy Steinberg and the MA Pain Initiative, the MA
(POPAN)—APF’s fast- Board of Registration of Physician Assistants recently adopted a Policy on the Management of Pain to provide
guidance about the appropriate assessment and treatment of pain. Additionally, the MA Pain Initiative, in
growing grassroots conjunction with the state Boards of Pharmacy, Nursing and Medicine, will roll out a plan to include pain
network of advocates—is management training and publications in their correspondence with health care licensees.
keeping busy! Dedicated POPAN leaders Kathy Hickey, RN-BC, Marcia Homer, RN-BC, and Cassie Synder, RN, MS, are working together to
help pass a resolution to establish a Pennsylvania Pain Task Force and Pain Task Force Advisory Committee to
to improving pain care in promote professional and public pain education and awareness.
America by raising public Speaking Up
awareness and improving Lois Pike, a POPAN leader in Connecticut, was featured in an article in the February 2009 issue of Connecticut
Magazine, titled "Healthy Living - Handling the Pain." Pike recently released her second book, “Healing Hope.”
pain policy, legislation,
POP Action Network Leaders and advocates continue to speak up, letting their voices be heard, as they break down
and practice, POPAN is the barriers to pain care and encourage others to join a United Voice of Hope and Power Over Pain.
now active in 34 states. Here’s how YOU can HELP
• Encourage others to join POPAN. Members receive free APF publications and action alerts about time-sensitive
media, legislative and policy issues related to pain. It’s a fast and easy way to make your voice heard.
• Encourage organizations to endorse the Consensus Statement in support of the 2009 National Pain Care Policy Act.
We must get this bill passed this year! (Last year we were successful at gaining passage of the Military and
Veteran’s Pain Bills – thank you!)
• Check out the POPAN section of APF’s website. Here you’ll ﬁnd out about important advocacy efforts, who the
leaders are in your state and how you can assist.
Stay tuned for
what you can do for
Pain Awareness Month
and the National
Day of Action.
Cindy (standing) along with other POPAN leaders and collaborators at the Lois Pike
2008 advocacy training.
POPAN is working to inform, motivate, and harness the millions of voices of people affected by pain!
The larger our numbers, the more powerful our collective voice! Join us today! Visit www.painfoundation.org.
Congratulations to Scott Fishman, MD, president of APF’s Board of Directors, who recently received the Joseﬁna Magno Excellence in Education and Leadership Award
on behalf of Capital Hospice (www.capitalhospice.org). This award was initiated in 2004 in honor of Capital Hospice’s founding medical director, one of the early pioneers
in the ﬁeld of hospice and palliative care. The award recognizes individuals who have made major contributions to the advancement of hospice and palliative care. In a
reﬂection of the interdisciplinary nature of the movement, honorees are selected from across all disciplines working in the ﬁeld.
AMERICAN PAIN FOUNDATION (APF)
is the nation’s leading independent non-proﬁt 501(c)3
organization serving people with pain.
Our mission is to improve the quality of life
for people with pain by raising public awareness;
providing practical information, education and
support; advocating to remove barriers and increase
access to effective pain management; and promoting
research. APF has a comprehensive web site,
PainAid (online support), consumer publications,
APF Pain Monitor (monthly e-newsletter), a toll-free
message line and public awareness and legislative
“Hugs & Kisses!” to all APF members! activities.
Did you share “Hugs & Kisses!” with someone you love this past Valentine’s Day? This new and “love-ly” www.painfoundation.org
giving opportunity was well received by APF members. Our heartfelt thanks go to those who made a gift to
APF in the few weeks leading up to February 14. We recognized your generosity by sending a Valentine’s Day
tribute card to your chosen loved one.
Also, thanks to APF members who helped spread the word, either by forwarding our “Hugs & Kisses!” emails American College of Rheumatology
to friends, co-workers and families, or by generating buzz about it on your Facebook page or other social www.rheumatology.org
Through this effort, we were able to reach out to many people suffering with pain who were not yet APF Arthritis Foundation
members, many of whom are now beneﬁting from our information resources, support services and advocacy 1-800-283-7800
You truly make a difference. We look forward to bringing “Hugs & Kisses!” back next year!
National Fibromyalgia Association
BOOK REVIEW National Fibromyalgia Research Association
100 Questions & Answers About Migraine
By Katherine A. Henry, MD & Anthony P. Bossis, PhD RECOMMENDED
National Institute of Arthritis, Musculoskeletal
and Skin Diseases
Reviewed by Carolyn Noel 1-877-22-NIAMS (226-4267)
“ Ittotook me aIlittle while lot.get used to theaQuestion & Answer style ofIthis book, butmany
say that learned a
Having been migraineur—a new word learned—for
years, I thought I knew all there was to know about migraines. VULVODYNIA/PELVIC PAIN RESOURCES
This books takes the reader through the 5 W’s (Who, What, When, Where, and Why) of
migraines. It is easy to read and understand, and would be a great tool for educating the National Institute of Child Health and Human
patient and his or her family on what to expect, including tips on what can be done to ease Development
or prevent migraine pain, as well as to help prepare the patient to self-advocate. 1-800-370-2943
I would have to agree with Dr. Dodick, who is quoted on the back cover, stating that the www.nichd.nih.gov
writers ‘truly empower patients with this book.’ I would recommend this book to
migraineurs (even experienced ones like myself), their families, friends and co-workers.
National Vulvodynia Association
The authors deal with sensitive issues, such as the correlation between chronic pain and www.nva.org
depression, intimacy, and talking with loved ones, in an adept manner. I believe that, in
reading this book, patients can greatly improve their communication with their doctor,
National Women’s Health Resource Center
loved ones co-workers and employers.
I want to become a Champion over Pain!
LYME DISEASE AND CHRONIC PAIN
I Sign me up to receive FREE APF Publications Lyme and Tick-Borne Diseases Research Center
Name_____________________________________________________________________ Circle: Male/Female www.columbia-lyme.org
Lyme Disease Association
City___________________________________________________________ State_________ Zip_______________
Email ____________________________________ Phone ________________________
I wish to contribute
I $500 I $250 I $100
Teleconference/Webinar Replays Association
I $50 I $25 I Other__________ Missed a recent APF teleconference or webinar? Check
I Single contribution I Monthly recurring contribution
out archived topics including:
I Enclosed is my check I Charge my credit card Replay.htm
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Signature ____________________________________ Exp date_____/ _____
• The New Face of Fibromyalgia
The enclosed gift is made in I Honor of I Memory of _____________________
• Pain and Complementary Therapies
Send a card acknowledging gift to: ______________________________________________________
More Ways to Contribute • Pain and Post-Traumatic Stress Disorder:
I Send me information about including APF in my Will or Estate Plans. What’s the Connection?
I Send me information about donating stocks or securities. • Spotlight on Shingles: Know What You Can Do
I I would like to learn more about annuities and other planned giving programs.
I Tell me more about making recurring monthly contributions.
Mail to: American Pain Foundation • 201 N. Charles St. • Suite 710
Baltimore, MD 21201-4111 • Phone: 410-783-7292 x100
Fax: 410-385-1832 • Email: firstname.lastname@example.org
Join APF today to receive
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All rights reserved. Reproduction of material published in The Pain Community News is encouraged with
written permission from the American Pain Foundation. Write, fax, or email to the addresses above.