For people with pain “How do youspell relief?” can be a very difficultquestion. Many of them come to the

ACPA after years of trying to find a way torelieve their pain. They’ve tried everything.They’ve seen just about every kind of healthcare provider you can imagine. And theyhave tried things that are on traditionalmedicine’s furthest borders, somewherebetween alternative and desperate.

Calls come into our office daily from peo-ple with pain who are at their wits’ end,drained emotionally, physically, and finan-cially from their efforts to seek relief. Manyhave given up on finding a means to endthe pain and are just hoping for some-thing—just what, they don’t quite know.

The list of things they have tried reads likea medical dictionary. In the beginning, theyhope to find a simple solution to relievetheir pain. But eventually, they move on to nerve blocks, biofeedback, acupuncture,radio frequency, massage, surgery, medica-tions, physical therapy, electrical nerve stimulation, medications, vitamins, yoga,meditation, counseling, dieting, macrobioticdiets, swimming, walking, magnets, quittingtheir job, and moving to another part ofthe country. You name it, they’ve tried it.And when they hear of a new treatment—no matter how much they say they havegiven up—they will still jump at the chancefor relief.

Many of these folks have the same problemI had. I tried each of these things, one at atime. If a therapy or treatment didn’t work,I would discontinue it and move on to thenext thing. That was my pattern for sixyears. Then I found myself in a pain man-agement program that offered many of thesame solutions I had tried over the years.

While they said they would be able to helpme, I knew I was a lost cause and it wouldbe a waste of time. But I tried it in spite ofmy feelings—more to prove there was nohope than to actually succeed.

But after almost six weeks of pain manage-ment I found that I had moved from beinga disabled patient to living as a functioningperson. It wasn’t magic. In fact it was a verydifficult transition. There were a lot of fac-tors involved, but the key was this:

by Penney Cowan, Executive Director, ACPA

The Chronicle is published quarterly by the AmericanChronic Pain Association.

We welcome essays, poetry, articles, and book reviews written by people with chronicpain or their families.

Please send inquiries to:

The ACPAP.O. Box 850Rocklin, CA 95677

Executive Director:Penney Cowan

President,Board of Directors

Bridget Calhoun

Medical Editor:Steven Feinberg, M.D.

Copy Editor:Alison Conte

Special Features:Sally Price

The American Chronic Pain AssociationP.O. Box 850Rocklin, CA 95677www.theacpa.org(916) 632-0922

Non-ProfitU.S. Postage

PAI DPermit 5595

Pittsburgh, PA

The ACPA Mission

To facilitate peer support

and education for individuals

with chronic pain and their

families so that these

individuals may live more

fully in spite of their pain.

To raise awareness about issues

of living with chronic pain

among the health care

community, policy makers,

and the public at large.

1

LATE FALL 2006

How do you spell relief?How do you spell relief?

The Voices of People with Pain.We’re looking for your stories. (see page 11)

C O N T I N U E D O N P A G E 7 . . .

PROGRAM

YOGA

REA SWIM

MASSAGE

INTE

RATED

DIET

REST

It’s that time of year again. Manypeople are stressed out with lists of must-dos for this busy season

of parties and gift giving.

For persons with chronic pain, such alist can be their Scrooge, stealing alltheir holiday spirit and more. DaveDuhrkoop, 59, of Troutdale, Oregon(near Portland), was determined thatScrooge would not send his spinal pain soaring. He keeps this spirit-stealerat bay with significant and frequentself-talk.

Temptations to overdo or over-expectabound around the holidays.“Superman and Superwoman aredead,” Dave reminds himself. “The holidays especially are a time of year when expectations are greaterthan at any other time of year,” saidDave. “Everyone is expected to behappy and exuberant and to havesuper endurance.”

To keep his pain in check during theholidays and any other time, Dave sayshe has worked hard at knowing him-self. “I call it redefining yourself as‘you with pain,’” he said. He did anassessment of his life before and afterchronic pain, accepting the things hecould no longer do but focusing on the things he could do and continuesto do.

A Daily Self-Assessment HelpsFirst thing in the morning, when helooks at himself in a mirror, Davecounts his blessings, thankful to bealive, regardless of how he looks orfeels. He then realizes another day is at hand, and asks the followingquestions:

❆ “What things in my life am I actually grateful for?

❆ What can I do to make this day different, such as looking out for the small stuff?

❆ What impact could I possibly have on another person today?

❆ Am I going to let my pain and a bad attitude distract me from having a good day? (Remember, it’s a choice.)

❆ If I am in charge of my day—and my attitudes—then how can any outside influences mess it up?”

During the day, Dave plans for “tune-ups,” as he calls them, especially if it’s a dreary or bad-weather day, whichhappens frequently in Oregon. “I haveto kick-start myself, asking ‘What’swrong with you today? You have (inserta list of the good things in life). So, iflife is so good, what are you down for?I don’t know. Then knock it off.’”

“People love to be around positive people because negative people are adime a dozen,” said Dave. (He does recognize that negativity can reflect illness and that persons with chronicdepression need to seek treatment.)

Define Yourself RealisticallyDave said that just the act of listing in his mind the things that are good in his life makes a difference. “This isespecially important in today’s fast-paced world where the media are

constantly trying to define us,” he said.“We need to have a good hold on whowe are.” With this mindset peoplewon’t start thinking they need to behealthy and pain-free to be happy. “It takes an incredible amount of energy to ‘keep up appearances,’” Dave said. “Are you willing to pay the price (in increased pain and

fatigue) to pretend you are the modelof Madison Avenue’s man or woman of the year?”

Chronic pain is already an “incredibledrain on our emotional and physicalstrength,” he said. Trying to be some-thing or someone else (who doesn’thave pain) increases that drain enormously.

If people do not know themselves wellor don’t like themselves, they may belikely to do something simply to pleaseanother person. “Don’t do things youdon’t want to do. I have no problem in calling and saying I can’t make it,”Dave said. “It’s how I take care ofmyself, plus it allows me to be stronger in areas when I need to be.”

Multiple Methods to Manage PainDave began his odyssey with chronicpain in 1990. After multiple neck andlow back surgeries, he was told he hadarachnoiditis (inflamed layers aroundnerve bundles along the spine second-ary to surgery), aggravated by a formerback infection. He has disc problemsand stenosis (narrowing) of the spine as well. As part of his treatment, he hastwo implanted pain devices—a spinalstimulator and a medication pump.When managing his back pain withmedications, he tries to balance hismental alertness with the pain.

In addition to his physical aids, medication, and constant attitudeadjustments, Dave uses exercise, healthy eating, and spirituality to manage the pain. Of the last, Dave said his personal religious beliefs have had a tremendous impact on his attitude. “Since I’ve become aChristian, my pain has become muchmore acceptable to deal with. It’s thesame pain and problems, but knowing

I have a higher power I can turn mypain over to is most important to me.”

Dave said normally his pain is 6 or 7on a 10-point scale (10 being the mostpain possible), but with the combina-tion of life changes he has made, thepain is about a 3. He uses a little ofeverything to manage his pain, a littlebit of medicine but not too much, anda little exercise.

Learning to Ask for HelpWorking with the ACPA group that hefacilitates, he has learned to stick upfor himself. This has come in handy, he said, in emergency rooms, both forhimself and when acting as an advo-cate for others in pain.

His assertiveness has also helped himto do one of the hardest things for people with chronic pain: ask for help.“I loathe asking for help but I willbreak my back for a friend,” he said,suddenly realizing the irony of hiswords. While it’s hard for him to askothers, he likes it when someone askshim for help.

And he keeps his sense of humor.Explaining that he’s six feet two and

200 pounds, he tells of the “funnylooks” he gets “when I ask someone totake my groceries out to the car forme.” Does he feel he needs to explain?“No. I’ve learned to do that withoutfeeling bad about it,” he said.

Dave is looking forward to the holidayseason because he has learned a lot of lessons about pain control. “Youdeserve to be as happy during the holidays as you can be. Your pain isn’t going to go away, just because it’sChristmas. Your attitude about yourselfand the world around you is what setsyou apart as a special person.

“You can live with chronic pain andstill enjoy a great quality of life. Likeyou, I suffer from chronic pain andlike you I have been on a quest the last 14 years that has brought me to apoint of equilibrium in my life,” hesaid. “Learn to trust yourself. You canbe your own best coach! Learn to livewith your pain as an extension of your life.”

As Dave said, chronic pain is not theenemy, but rather an extension of you.And that “you” deserves to enjoy theholidays, too.

by Sally Price

2 3

Spelling Relief During the Holidays Spelling Relief During the Holidays by Sally Price

People love to be around positive people because negative people are a dime a dozen.

Temptations to overdo or over-expect abound around the holidays.

4 5

The Search for Pain Relief Spans HistoryThe Search for Pain Relief Spans Historyby Alison Conte, Editor, Chronicle

If you spell relief with prayer, meditation, or music, or yearn for a magic bullet to cure all ills, you

have something in common with earlycivilizations. Since ancient times,human beings have used magic spells,dances, music rituals, prayer, sacrifice,and herbal remedies to try to relievepain, fighting symptoms that theycouldn’t see or understand.

The history of pain treatment goes backto Greece, Egypt, and China where earlyhealers used techniques and medicinesthat evolved into pain treatments wecommonly use today.

It was HIPPOCRATES, the ancient Greekphysician, (460–380 B.C.) who suggestedthat women in childbirth chew on willow leaves, which contain a form ofsalicylic acid, the active ingredient inaspirin. Egyptians placed electric eelson the wounds of patients to ease pain,a harbinger of today’s transcutaneouselectrical nerve stimulation for treatinglower back pain and arthritis.

Assyrian sculptures from 700 B.C. depictthe use of opium poppies for medicaland spiritual rituals. The practice ofacupuncture for pain relief is morethan 4,000 years old, starting with theNei Ching, which was first conceivedby Huang Ti in 2,600 B.C.

Indeed, it was the Greeks and Romanswho first theorized that the brain andnervous system produced the percep-tion of pain. Much later, LEONARDODAVINCI suggested that the brain wasthe central organ responsible for sensation and that the spinal cordtransmitted these sensations to thebrain. In 1664, the French philosopherRENÉ DESCARTES described “bits offire” bringing messages of pain from afoot to the brain, in what is still calleda “pain pathway.”

Herbs and MedicinesIn Homer’s Odyssey, Helen of Troy provides Ulysses and his companionswith a drug to “lull pain and angerand bring forgetfulness to every sor-row,” probably a reference to opium.Some herbal remedies used in theMiddle Ages in Europe contained useful opiates, but those that containedgold, ivory and “unicorn horn,” wereless effective.

Opium’s power to relieve pain waswidely recognized by the time of theRenaissance. PARACELSUS, (1493-1541)was a chemist, mystic, and physicianwho suggested a mineral-basedapproach to health problems, asopposed to the herbal medications in use at the time. He described theaction of ether on chickens, reportingthat this substance “quiets all sufferingand relieves all pain.” Unfortunatelythis discovery was not followed by any clinical application until the 1800s.Paracelsus also combined opium withalcohol to form laudanum, used for therelief of pain well into the 19th century.

In the U.S. in the late 1800s and early1900s, dubious medical men recom-mended magnets and electricity fortheir healing properties and these treatments continue to impress some

believers. A wide variety of concoctionslabeled as balms or liniments weresold to people in pain and the onesthat contained alcohol or cocaine probably provided some relief, alongwith the expected intoxication. Later,serious physicians and scientists woulddevelop more reliable processes bywhich opium, morphine, codeine, andcocaine could be used to treat pain.

The heat from a hot, wet mustard plaster, popular in the 1930s, was aforerunner of treatment by “counter-irritant.” This is using one kind of painor sensation to cancel out another,more severe pain, a practice that hasbeen refined and is used today.

In 1817 Prussian pharmacist F.W.A.SERTURNER isolated morphine as the active ingredient in opium. Themanagement of pain with morphinewas somewhat limited until FRANCISRYND in Ireland and CHARLESPRAVAZ in France developed the hypodermic syringe and hollow needle in 1853.

Anesthesia for Surgical PainDiscoveries related to minimizing surgical pain—such as chloroform,nitrous oxide, and ether around 1831—led to painless surgery to reduce chronic pain. Operations for trigeminalneuralgia, posterior rhizotomy, and retrogasserian neurectomy were developed.

In 1884 CARL KOLLER worked withSIGMUND FREUD on the use ofcocaine as a treatment for morphineaddiction. Soon, cocaine was providingeffective anesthesia in many types ofsurgery, nerve blocks, and spinal,epidural, and caudal anesthesia. Its usespread to acute-pain and chronic-painrelief, until the toxic and addictiveeffects of cocaine became known andthe practice was discontinued.

Other inventions were used to alleviatesevere and persistent pain, includingradiotherapy and X-rays (WILHELMROENTGEN in 1895), light therapy, electrotherapy, hydrotherapy, ther-motherapy, and mechanotherapy.

Chronic Pain as DiseaseAround 1945 the French surgeon RENE LERICHE identified chronic painas a disease state, describing treatmentof causalgia and reflex sympathetic dystrophy. Other physicians began tostudy the diagnosis and relief of painand sympathetic-block anesthesiabecame a popular treatment of paininvolving known nerve tracts and pain of obscure origin.

During World War II JOHN BONICA,an anesthesiologist, was one of the firstphysicians to appreciate the difficultproblems presented by people withchronic pain. He realized that complex pain problems could best be managed by a team approach. In 1960, Dr. Bonica developed one

of the first multidisciplinary pain centers in the U.S. at the University of Washington in association with DR. LOWELL E. WHITE JR., and nurseDOROTHY CROWLEY.

In recent years, the use of high technol-ogy has helped doctors understand themechanisms of pain much better andprovide new treatment modalities,according to STAN CHAPMAN, Ph.D. “In select cases, patients are helped by PET scanning to understand howpain is processed in the brain and bythe availability of advanced methods ofspinal cord stimulation, radiofrequencylesioning, and innovative delivery systems for medications,” he said.

Today there are many improvements in interventional treatments for chronicpain and more options, medications,and other methods of pain relief.“Research keeps expanding and thefield of chronic pain management hasmatured from a fledgling organizationof a few professionals to a field in itsown right, with its own organizations,journals, and board exam for physi-cians,” Chapman added.

However, Dr. Chapman reminded usthat there are still too few practitionersto treat people long term and morecomprehensive rehabilitation programsaimed toward emotional coping andfunctional restoration are needed.

John Bonica

Hippocrates

C O N T I N U E D O N P A G E 6 . . .

6 7

for the first time I received all of thetherapies I needed in an integratedprogram.

Though one therapy did not work byitself, when I combined it with othertherapies, I began to experience truechanges in my ability and function.

A person with chronic pain is like a car with four flat tires. When we try toreduce our pain and suffering by takingmedications, we are putting air in justone tire. When that doesn’t work—because three tires are still flat—we stopand move on to the next thing. Whatwe need to do is ask ourselves and ourhealth care providers what else we needto do to fill the other three tires. Foreach of us the answer will be different,depending on our individual needs.

The point is that we need the rightcombination of interventions to allowus to drive our “car” and begin ourjourney from patient to person. Reliefmay be possible for you too, if youbegin to look at the big picture of painmanagement rather than the individualpieces.

It is possible to live with pain, and find relief, if we spell it with the right therapies, support, interventions, and attitude.

Relief C O N T I N U E D F R O M P A G E 1 . . .History of Pain Relief C O N T I N U E D F R O M P A G E 5 . . . Growth In Organizations

for PainToday we understand that pain is more than a temporary inconvenience. When it impairs daily life and produc-tivity, it becomes a serious economic and major health problem.A number of organizations now help people with pain and workto to educate pain management professionals.

✤ The International Association for the Study of Pain (IASP) was incorporated in 1974 and now publishes the scientific journal Pain.

✤ The American Society of Regional Anesthesia (ASRA) initially was founded in 1923.

✤ The American Pain Society (APS) started in 1978.✤ The American Chronic Pain Association was founded in 1980.✤ The American Academy of Pain Medicine was organized in

1983 and publishes Clinical Journal of Pain.✤ The World Institute of Pain was organized in 1994

and publishes the Current Review of Pain.

A more extensive list of organizations concerned with specific and general chronic pain can be found on the ACPA Web site at Partners for Understanding Pain,http://www.theacpa.org/pu_main.asp.

“For those in need of comprehensiveinterdisciplinary management, treat-ment options are poorer and more limited than was the case 15 years ago,”he said.

Learning from the PastDR. STEVEN FEINBERG, physiatrist andpain medicine specialist with morethan 20 years in pain management,feels that the most important develop-ment in recent history is the recogni-tion that chronic pain is best managedby a treatment team of doctors andtherapists as educators who shift healthand well-being responsibility to theindividual.

“The functional restoration modelincludes timely and accurate diagnosisand evidenced-based treatment; treatingthe individual with respect and dignity;assessment of the person’s psychosocialstrengths and weaknesses and supportsystem; efforts at education along withexpectation management; functionalgoal setting; ongoing assessment ofpatient participation and compliance,complicating problems, and progresstoward achievement of goals,” said Dr. Feinberg.

HILDE BERDINE, PharmD, BCPS,agreed. She is assistant professor ofpharmacy practice at Mylan School of Pharmacy, Duquesne University,Pittsburgh. “In my practice I try toapproach the patient holistically, espe-cially those people with chronic pain.As clinicians, we must focus on the psychological aspects of pain and useother than drug therapies in treatingpain. I believe alternative therapies canbe explored, such as biofeedback, medi-tation, and group support.” she said.

A significant advancement is the identi-fication, assessment, and treatment ofpain as a priority in medical care. “We need to assess pain as the fifthvital sign, from pediatric patients to theelderly. We must believe the patient’sreport of pain and treat pain and the patient with dignity and respect,regardless of ethnic background, cultural beliefs, or past history of substance abuse,” she said.

To build on the progress of the past,the future must include multidiscipli-nary conservative chronic pain care,said Dr. Feinberg. Along with limitedmedication and education for relapseprevention, he advocates for “properactivity and work pacing, ergonomicaccommodation, and when appropri-ate, transitional return to gainfulemployment.”

Though the history of pain shows usthat we have made great progress intreating chronic pain, all the medica-tions and invasive interventions are“just tools in the tool chest of thephysician,” as Dr. Feinberg said.“Ultimately, the successful individualwith chronic pain takes control of lifeand minimizes interactions with themedical community. It is all about having a useful, happy, and productivelife despite having a chronic pain problem.”

Sources:The John C. Liebeskind History of Pain Collection at the Louise M. Darling Biomedical Library at UCLA. “The Relief of Pain and Suffering” was a symposium that marked the opening of the collection in 1998.www.library.ucla.edu/biomed/his/pain.htmland www.lieberson.com/en/medical_histo-ry_and_ethics/history/history_of_pain.htm

ABC News, May 9, 2005, “A Brief History of Pain, Did Ancient Cultures UnderstandPain Treatment Better Than We Do?”

“Chronic Pain,” MedicineNet.com atwww.medicinenet.com/chronic_pain/article.htm

“A Short History of Pain,”Doctorsforpain.com atwww.doctorsforpain.com/patient/history5.html

Since the early days of his career,Dennis C. Turk, Ph.D., has beendriven to understand pain and

how it can be alleviated. His 30 yearsof experience have given him an under-standing of the magnitude of the painproblem as well as ideas about how toimprove treatment in the future—ideasthat don’t involve any “magic pill” orsingle breakthrough treatment method.

“Pain is a national epidemic, but we’vedone a miserable job of getting theword out,” Turk says. Because pain canbe caused by many different diseases,injuries, and syndromes, the magnitudeof the pain problem gets lost. “Thereare foundations and charities for diseases that cause pain, but there’s noposter child for pain,” Turk points out.And pain has a high cost to individu-als, their families, and to society,whether it’s caused by a short-termproblem or by something that willnever be fixed. In a recent president’smessage for the American Pain Society,Dr. Turk cited statistics that say 42 percent of American adults experiencepain every day, and that pain’s effecton families may be even more signifi-cant than its effect on individuals withpain (see the sidebar for more details).

A psychologist by training, Dr. Turkbegan his research on pain in the mid-1970s. He has carried that interestthrough his career, both in his ownresearch and in his clinical and teach-ing activities. At Yale University, hetaught courses on pain assessment andon coping skills, both subjects of hisearly research. In the early 1980s hemoved to the University of Pittsburgh,where he directed the Pain Evaluationand Treatment Institute at PresbyterianUniversity Hospital (now University ofPittsburgh Medical Center). Currently,

Dr. Turk is theJohn andEmma BonicaProfessor ofAnesthesiologyand PainResearch anddirects theFibromyalgiaResearchProgram at the

University of Washington School ofMedicine in Seattle. He is a formerACPA board member, the current chairof the ACPA’s Professional AdvisoryBoard and has just completed a two-year term as president of the AmericanPain Society, a multidisciplinary organi-zation for health care professionals.

Despite the significance of the painproblem, Dr. Turk points out that our arsenal for combating pain haschanged surprisingly little since ancienttimes. Opioids, nonsteroidal analgesicslike aspirin, surgery, and electrical stimulation have been used as paintreatments for thousands of years. “Theearliest recorded treatment for painwas opium for headaches. Prehistoricskulls have been found with preciselycut holes believed to be created torelieve pain, and willow bark, fromwhich aspirin is derived, was recom-mended by Hippocrates,” Turk says.“The early Greeks used torpedo fish,which give off an electric current, torelieve pain. Today we have opioids,nonsteroidal anti-inflammatory drugs(like aspirin), surgery, and transcuta-neous electrical neurostimulation,”Turk says.

Treatment techniques have improvedgreatly, of course, and modern pain-relieving drugs and surgery techniquesare much more sophisticated than

primitive ones, but Dr. Turk says thatno truly new treatment options havecome to light; rather we have variationson the ancient approaches. This differ-ence is striking when you think abouthow many breakthroughs have come in other areas of medical science overthe past few decades—new cancer treatments, for example, or advances in diabetes care.

Although he expects no new treatmentoptions, Dr. Turk sees great hope in the area of treatment customization. “Ithink we’re going to move away fromtreating everyone with the same diseasethe same way,” he says. Scientists arebeginning to understand why the sametreatment doesn’t work for every personwith the same problem. “Now, we havethe idea of a ‘standard treatment,’” hesays, “but just because someone hasmigraine, for example, that doesn’tmean they’re just like everyone elsewho has migraine.” Genetic researchhas shown that people of different ethnic backgrounds respond differentlyto some medications. And differencesare also being uncovered in the waymen and women experience pain,adapt to symptoms, and respond topain treatments.

The individual characteristics of peopleat risk for chronic pain also might beused to change how they are treated.Dr. Turk is currently doing research onwhiplash injuries sustained in motorvehicle collisions to determine whatfactors predict who will develop lastingneck pain following a whiplash injuryand who will recover quickly. Thesefactors might have to do with prior history, the type of injury, or be traitsof the injured person. The study also is testing a rehabilitation program tosee if it can prevent the development

by Sally Price

8 9

Dennis Turk Ph.D. – 30 Years in Pain Research Dennis Turk Ph.D. – 30 Years in Pain Research by Erin M. Kelly

of chronic pain and disability.

“We need to find out what characteris-tics predict how an individual is goingto respond to treatment, and use thatto customize the treatment to the indi-vidual,” Turk says. He points out thatthis is a frequently overlooked conceptin medical research. “Treatment studiestalk about ‘average differences’, whichmeans that some patients did well andsome did not,” he says. “We need to doresponder analysis to determine whatthe characteristics are of the peoplewho did well on that treatment com-pared to those who did not.”

Another trend that Dr. Turk expects to continue is the use of multipleapproaches to pain treatment. “A treat-ment can be considered effective if it

gives a 20 to 40 percent pain reductionin half the people who receive it,” hesays. That means that even those peo-ple who respond to the treatment arenot left pain free. “The pain is notcompletely eliminated, they are notcured,” he says. Good pain control inthe future will likely involve a combi-nation of treatments, according to Dr.Turk. “I think we are going to moveaway from monotherapy—a singlemagic bullet—and move toward treat-ing the whole person.” People have history before the onset of pain, andthey live in social environments, Turksays, adding, “Pain does not occur in

a person’s body, it does not occur in

a person’s mind. Pain occurs in a person’s life.”

Dr. Turk also witnessed the growth ofthe support group movement first handas an ACPA board member from 1986to 1992. “While at Yale I had sent a letter to ACPA founder Penney Cowansaying that I was interested in what shewas doing,” Turk says. “Coincidentally,I ended up in Pittsburgh soon afterthat. She snapped me up immediately.”Although he left Pittsburgh in 1996, Dr. Turk stays involved with ACPA as a member of its professional advisoryboard.

In the future, Dr. Turk hopes supportgroups will continue to improve inquality through organizations likeACPA that present a positive messageand provide organizational resourcesfor individual groups. He also believesthe support movement will need tobecome more inclusive. “Supportgroups tend to be a middle class phenomenon, but pain doesn’t discrim-inate,” he says. People of lower socioe-conomic status who are just getting by might not have time to attend a traditional support group meeting, butthey could benefit from the resourcesof groups like ACPA.

“When you think beyond the individ-ual with pain to include his or herimpact on significant others (for exam-ple, family, co-workers) and communi-ty, you see that pain has costs not justin dollars spent on health care,” saysDr. Turk. Ironically, the key to solvingthat problem might be to look morespecifically at individuals than we have in the past. It is a mission thatDr. Turk continues to champion.

Good pain control in the future will likely involve a combination of treatments.

Dr. Turk’s president’s message for the American PainSociety (APS) for winter 2006 presented statistics froma survey of pain and discussed pain’s impact on society.

Here are some of the points he made:✤ 42 percent of all adults in the United States experience daily pain

of some sort; 89 percent experience pain at least once a month.(Gallup/Arthritis Foundation 2000)

✤ Every year, nearly half of all Americans see a physician because of pain. (Mayo Clinic, 2001)

✤ Chronic pain is responsible for more than $150 billion in healthcareand disability costs annually. (U.S. Census Bureau 1996)

✤ Productivity loss among workers with common pain conditions accounts for $61.2 billion per year (Stewart et al. 2003)

✤ Assuming two close family members for each of the 50 million Americans with chronic pain, pain directly affects roughly half the U.S. population.

✤ A 1987 study found that the spouses of people in a pain rehabilitation program had 2.5 times more depression than thepatients themselves. (Flor et al. 1987)

✤ Less than one percent of the budget-supported grants given by the National Institutes of Health in 2003 were awarded to projects with a primary focus on pain. (Bradshaw et al. 2005)

The entire article can be read on the APS website athttp://www.ampainsoc.org/pub/bulletin/win06/pres1.htm

Kristianne Sunde really loves her job. As the new FacilitatorResource Coordinator for the

ACPA, she gets to talk with supportgroup facilitators and regional directorsfrom Russia, Ireland, Australia, Brazil,and Canada, as well as across theUnited States. “The Boston accents arethe trickiest,” she said laughing, “But Ilove building relationships with themas well as their families. It is just sucha joy and encouragement to me.”

Kristianne, 20, works part time at theACPA office, helping to connect withour 236 support group leaders andestablish a better system of communi-cations among them. “I’m their coachand their cheerleader, encouragingthem to be better at what they’realready great at,” she said.

Kristi is available to any member, but especially to facilitators who needhelp in running their support groups. “We have posters, supplies, materials—

anything they need we will do our best to provide,” she said. She is alsocollecting ideas from facilitators—fromNew England to Canada to California—in hopes that she might share theseideas with others. “We can share strate-gies on how to start a group, buildattendance, resolve conflicts, andincrease participation, as we learn from each other’s experiences and work as a team.” she said.

Kristi worked as Penney Cowan’sadministrative assistant at the ACPA in 2005, but moved out of the area to continue her education at FresnoPacific University in Fresno, California.When the Facilitator Coordinator position was created in the summer of 2006, she seemed a perfect fit, as she was making plans to move back

to her hometown in Rocklin, within afive-minute drive of the national officeof the ACPA.

When she’s not at the ACPA, Kristianneis at William Jessup University(Rocklin, California) working towardsher two bachelor’s degrees in YouthMinistry and Bible/Theology. She liveswith her parents, two younger sisters,Brittany and Megan, and their belovedGolden Retriever, Sadie. She also enjoysplaying and watching sports, reading,scrap-booking, quilting, traveling, volunteering at the local elementaryschool, and teaching the flute.

“I am so impressed with our facilitators’ strength and dedication,their ability to overcome bumps in the road and to be so passionate about helping people with pain—it’s incredible,” Kristi asserted. She welcomes phone calls and emails from group leaders who have questionsor ideas to share. You can contact herat acpagroups@pacbell.net or 1-800-533-3231.

Radio Program on Breakthrough Pain Millions of people across the U.S. learnedthe facts about breakthrough pain onOctober 3, when the ACPA conducted aradio media tour, funded by an unrestricted educational grant from Cephalon, Inc. The broadcasts included basic introductoryinformation and a question/answer session.

ACPA founder and executive directorPenney Cowan and ACPA board memberDr. Knox H. Todd, director of the Pain and Emergency Medicine Institute at BethIsrael Medical Center, led the discussion.

Breakthrough pain (BTP) is an intenseincrease in pain that occurs suddenly even when pain-control medication is beingused, according to Dr. Todd. It can happenspontaneously or in relation to a specificactivity, sometimes three to four times aday, and last an average of 30 to 60 min-utes. Sixty-four percent of people treated forchronic pain associated with cancer and 74percent of people treated for other chronicpain conditions will experience BTP.

Penney reviewed how untreated BTP affectspeople physically and emotionally, with the fear of increased pain preventing themfrom enjoying normal activities. Payingattention to when BTP occurs can help, as you work with your doctor to develop a treatment plan. This might involve medication, relaxation techniques, pacingyour activities, and learning different painmanagement skills to reduce the triggersthat cause these flares.

To receive a free pamphlet, ManagingBreakthrough Pain, contact the ACPAnational office at 1-800-533-3231 or email ACPA@pacbell.net.

U.S. News Article Reviews OnlineInformationAs we all know, the Internet can be a powerful source of information—and misinformation—about pain treatment. But it can also offer a community of

support for people in pain, according to an article on the U.S. News and WorldReport Web site.

“The Web can offer the therapy of commu-nity—the knowledge that you are not alone,and tips from people suffering in similarways,” it states. It also quotes KristianneSunde, resource coordinator for the ACPA, who says, “Talking to others whoexperience intractable pain is itself a tonic.” You can find a link to the article at www.theacpa.org.

New York Governor Vetoes Landmark Pain BillIn the September ACPA Chronicle, wereported that the New York State Legislaturehad unanimously passed the Palliative CareEducation and Training Act. Unfortunately,on July 26, 2006, Governor George E. Patakivetoed the bill, which addressed the urgentpublic health care crisis of the undertreat-ment of pain. The legislation was initiatedby Compassion & Choices, and was the firstof its kind in the nation.

The Governor said that he was compelledto veto the bill because the Legislature didnot include funding for this program in the enacted 2006-07 state budget, despiteproviding record levels of funding forhealth care.

Information on this legislation is availableat www.partnersagainstpain.com andwww.compassionandchoices.org/news.

It Takes Nerve Educational CampaignOver the summer and fall of 2006, ACPAexecutive director Penney Cowan traveledthough California and New York with themessage that it takes nerve to live with neu-ropathic pain (or any other type of pain),but that it can be done. Penney conductedmore than 35 town meetings to enhanceawareness and knowledge of neuropathicpain among individuals, family members,and professionals.

ACPA UpdateACPA Update

10 11

ACPA Facilitators Have a New CoachACPA Facilitators Have a New Coach

Welcome to our new groups:

Dallas NeedhamHemet, CA

Neal NicolsonLong Beach, CA

Robin WestPlacerville, CA

Judith MitchellPlacerville, CA

Rani FleuryPlacerville, CA

Pat MerrittStanhope, NJ

New ACPA Groups

I am so impressed with our facilitators’strength and dedication

“The response has been wonderful,”Penney said. “It means so much to hear from someone who can validatethe experiences and feelings of the person with pain and offer real toolsfor dealing more productively with apain condition.”

In the post-program evaluation ques-tionnaire, one attendee wrote, “I justheard about this event yesterday andhave been in pain for some time. Ithought this would be helpful, butcould only stay for part of the program.Ten minutes into it I left to call my job to tell them I wouldn’t be in towork. This was too important to leave.”The program was underwritten by agrant from Pfizer. Learn more aboutmanaging nerve pain on our web site.

Updates C O N T I N U E D F R O M P A G E 1 0 . . .

The Voices of People with Pain.

For the March issue of the Chronicle, we are asking ACPA members to share their stories. Give us youranswer to: “What has living with pain taught me?” or“How has learning to manage pain changed my life?”

Please limit your story to around 600 words (one and a half pages typed, double spaced) and send it by January 15, 2007 to: Alison Conte, Editor, ACPA Chronicle, c/o acpagroups@pacbell.net, or Resource Coordinator, ACPA, P.O. Box 850,Rocklin, CA 95677.

C O N T I N U E D O N P A G E 1 0 . . .

12 13

As a support group facilitator, I appreciate informationfrom other facilitators on

how they conduct their meetings.

I know from visiting my groupsover the years that all vary ininteresting ways. It is easy to getstuck in one format for meetings,but we could “freshen up” anygroup by sharing ideas on how tovary the format now and then.Change is good!

In our Scottsdale, Arizona group,for instance, we pass around a seashell to give everyone a chance totalk. When you have the shell youcan talk about anything you wishfor a few minutes. Holding theshell gives you something to focuson, since it is sometimes hard tomake eye contact with others whenyou are new to a group. It alsogives you “the floor" with no interruptions.

Our Prescott, Arizona group want-ed to use a pine cone, but I believethey changed to something a littleless rough! If the person with theshell doesn’t feel like talking, hestates his name, and passes italong. When the shell is passed,the group knows that a person is done speaking.

Shift Focus from SymptomsFor a couple of meetings in a row,I found people spent too muchtime describing all their symptomsand dwelling on pain, which wetry to avoid at meetings. So, at thefollowing meeting I wrote downall the conditions that our groupmembers had. I took the list out-side the room and left it on achair in the hallway (no names

on it of course). Then I said, “All of our pain conditions are being left out-side of the meeting.” It was a great wayto demonstrate that we needed to con-centrate on pain management skills,rather than our pain condition. Itworked!

Now we encourage new members totalk about their pain conditions onlyduring their first meeting. We do how-ever talk about the "side effects" of painand how it affects their lives and howthey use pain management skills.

Afterwards, we have a discussion aboutthings that were said during this time.Or, people might have a question aboutwhat a person said during their turn.Then we either have a guest speaker or work on our pain management skill for the evening.

No matter what the theme is for the meeting, I always find at least a few minutes to talk about something in painmanagement that they can practice at home whether physical or psychological.

End with RelaxationI usually end with a short relaxation sessionusing guided imagery to help membersrelax each body part with emphasis onbreathing. Or we use a relaxation tape. This,I find, is a great way to send people home,relaxed and calm. I have my meetings inthe evenings twice a month. Usually, by theend of the day, most of us have higher painlevels, so by then, the relaxation really isappreciated.

Sometimes, members hesitate to get up toleave, as they are so relaxed. I am usuallythe one leading this exercise, talking in acalming slow, soothing voice. This relaxesme too!

Here are some other meeting ideas that have worked for us:

✤ Ask if a member would like to present a topic at a meeting, or conduct the small relaxation session.

✤ Ask for suggestions on types of guest speakers: psycholo-gists, hypnotherapists, pharmacists, acupuncturists, etc.

✤ Have "family night" to encourage family or friends to attend (though they are always welcome). This year a coupleof members brought young children, who participated andbenefited from the meeting, learning that it wasn’t so unusual to have a parent with pain problems.

✤ Gadget Night. Everyone brings in any apparatus they use to help their pain condition or side effects from it.

✤ Sharing hobbies or passions. One member brought a poemand another a cartoon. One did some stained glass crafts,and another showed a painting. This went over well, as people were so proud of their talents and it gave othersideas of what they might like to try.

✤ Some groups do mild exercises. I tried this, but it was not something my group was very receptive to. Sometimes, I do “office yoga” with them: mild stretches from a sittingposition.

The ACPA Chronicle would love to hear what other group leaders

do that works well for their members. Send your suggestions to

acpagroups@pacbell.net, or Kristianne Sunde, Facilitator Resource,

Coordinator, ACPA, P.O. Box 850, Rocklin, CA 95677

Facilitator’s Forum:What Works for Your Group?Facilitator’s Forum:What Works for Your Group?

by Penny Rickhoff, Arizona Regional Director

Special thanks to our hardworking

regional directors:

Pat GebhardtOregon Regional Director

Penny RickhoffArizona Regional Director

Diane SlomkowskiOhio Regional Director

Clare TrautmannMid Atlantic States Regional Director

(West Virginia, Virginia, North Carolina, South Carolina, Georgia)

Helen CaminitiCentral Pennsylvania

Regional Director

Mariann FarrellWestern Pennsylvania

Regional Director

Cindy SteinbergNew England Regional Director

(Maine, Vermont, New Hampshire,Massachusetts, Rhode Island,

and Connecticut)

Stephen KellyIreland Regional Director

Margaret KnightAustralia Regional Director

Marina L.Russia Regional Director

Penny Rickoff, Arizona Regional

Director, finds gardening is

a hobby that helps her relax

and manage her chronic pain.

Having support group members

share their hobbies and talents

can add variety to the usual

meeting agenda.

Name

Address

City State

Phone Number Today’s Date

Zip Code

( ) / /

I want to help the ACPA. Enclosed is my tax-deductible donation ofIf you don’t want acknowledgement of your donation, please check here:

To Donate to The ACPA:To Donate to The ACPA:

Signature

$

Credit Card Number Expiration Date

/ /

Method of Payment: Check Visa MasterCard

Please return the completed form to: The ACPA, P.O. Box 850, Rocklin, CA 95677Or visit us at www.theacpa.org to join, donate, or purchase ACPA materials.

14 15

The ACPA is happy to acknowledge the birthdays, anniversaries, and special occasions of

members or their loved ones. We also provide space in The Chronicle for tributes, memorials

and thank you notices. To recognize a loved one on our tribute page, call 1-800-533-3231

or write to ACPA at P.O. Box 850, Rocklin, CA 95677. We welcome gifts in any amount.

TributesTributes

She had chronic pain for the lastsix years of his life and he jokedthat they were the only husband-wife team in their ACPA group. Sheaccompanied him to one retreat, at which they celebrated their 50thwedding anniversary. “The deeplove and commitment betweenthem was apparent to us all,” said Pat.

Larry loved the ACPA and creditedits literature and support group as being of great help to him.“Although Larry was less active inrecent years, his passing is truly aloss to ACPA,” said Pat.

“I can always picture Larry's smile. It was special and madeeveryone feel good,” added DianeSlomkowski. “He was kind, under-standing, and always willing to listen and hear what you had tosay. He will be missed so much.”k

In Memory of Larry Bennett

Larry, 87, was a familiar face toACPA facilitators at retreats, liftingspirits with Sunday morning devo-tional messages over many years.

Larry was a quiet, unassuming man who gave a strong message. Pat Gebhardt, ACPA Oregon regionaldirector, remembers Larry as “aninspiring individual who had agreat deal to share with younger,less experienced leaders.” At aretreat in 1995, he helped lead aworkshop called “Good Grief:Dealing with Loss.”

“Larry had a wealth of informationto share on all sides of the issue,”Pat said. She recalled that he was a chaplain during WWII, and later,a hospital chaplain. He lived withchronic pain for 25 years, most ofthat time as facilitator of an ACPAgroup in Harrisburg, Pennsylvania.

Everyone who was around Larry for any time was struck by thedevotion he showed his wife, Betty.

In Memory of Geneva Cottrill

Sadly, we lost another ACPA member this year—Geneva Cottrill.Penney Cowan remembers Genevaas being very active with the sup-port group in Chillicothe, Ohio.“Every holiday her group would setup a table at a local departmentstore and do gift wrapping to raisemoney for the ACPA. They were the only group to ever do that,”recalled Penney.

ACPA Changes Membership ProcessACPA Changes Membership Process The ACPA is a peer support organization:we help each other learn to live fully in spite of chronic pain.

When you donate to ACPA, you help us pro-vide resources, materials, and that personalconnection that can make such a differenceto people in pain.

Starting January 1, 2007, anyone who makesa donation of $25 or more becomes a memberof ACPA for one year. (Existing members willbe grandfathered for one year, ending in Dec. 31, 2007.)

New members will be able to extend theirmembership each January with another donation in response to the annual appeal.

This change in the membership program will ease the administrative burden for ACPAstaff, who currently have to track and requestmembership renewals throughout the year.Members have also been confused when adonation request arrives shortly after theyhave paid for an initial membership.

We hope this new program will be moreattractive to everyone. New members willreceive an ACPA membership card, a 10 percent discount on all materials orderedfrom the ACPA, and a year’s subscription tothe ACPA Chronicle newsletter, either as a hardcopy newsletter or as the new online version,beginning in 2007.

Thank you to Endo

Pharmaceuticals and

Abbott Laboratories

for their support of

ACPA’s programs and

materials.