Lyme Disease Chronic Pain

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					                                                                                                                                                                                           Spring 2009
                                                                                                                                                                                         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!

                                                                                                 9’09          in
                                                                    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
                                                other conditions
                                                and performing a                                                               about pain and its management and support for those who are suffering.
Shelley Echtle
                                                tender point                                                                   • Print nine copies of APF’s brochure at, 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
                                                                                                                                                                                                 NON PROFIT
                                                                                                                                               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…
                                                                                                                                                                                                 PERMIT #566
                                                                                                                                                                                                  UTICA, NY
                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
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                                                                                                                                      arthritis that lasts a lifetime.                                                                                                                                             • 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.
  Lisa Gill
                                              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 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 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.                                             
                                                                                                                    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
                                     Arnold, MO

   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.

               COMING SOON!

    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,,                                                             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
    due to:
                                               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.
      sexual contact
                                                                                                                                         “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.


    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. ).
                                                                                            • 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
                                        skin problems.
                                                                                                                                                   for vulvodynia can help bring relief.
                                        The pain associated with vulvodynia can                                                                    Possible treatments may include
                                                                                                   Vulvodynia’s Impact
                                        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.
  horseback riding.
                                                                                                   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
  Jannie White
  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
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
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
                                                                                                           10%                                               9.40%
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).
                                                                                                                             ts                  g
                                                                                                                                                              ti o n                  ic         ge             a                       s               n
                                                                                                                                                                                                                                                                              y               t
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


    TOP 10 TIPS
    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
    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
    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
                                                                                                                 treatment strategies.
                                   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?                                                          
                                                              • 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                   
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
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

                                                        State Accomplishments
            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.
                 Action Network
                                                        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
                                      information about
                                     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

     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 ( 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”         
     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.
                                                                                                                              FIBROMYALGIA RESOURCES
     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      
     networking sites.
     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
                                                                                           I have

     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                       
     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                       
     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.
                                                   ”                                                                          1-301-299-0775

                  I want to become a Champion over Pain!
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                              Mail to: American Pain Foundation • 201 N. Charles St. • Suite 710
                                  Baltimore, MD 21201-4111 • Phone: 410-783-7292 x100
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