3 What is Your Pain Management Goal? 4 Using Mind, Body, and Spirit to Survive any Condition 8 Discovering New Strengths After Living with Pain
TABLE OF CONTENTS
Features 3 What is Your Pain Management Goal? 4 Using Mind, Body, and Spirit to Survive any Condition 8 Discovering New Strengths After Living with Pain
The Chronicle is published three times a year by the American Chronic Pain Association.
12 Barriers put Pain Relief Out of Reach
We welcome essays, poetry, articles, and book reviews written by people with chronic pain or their families.
14 Treatment of Pain is a Worldwide Concern
Please send inquiries to:
17 ACPA Support Groups Share our Mission
Departments 20 Board Member Profile 21 Medical News to Know 22 My Life with Chronic Pain and a False Diagnosis for Addiction
23 Book Review: Birth of a Self-Care Vigilante 24 New Groups and Facilitators 25 Tributes
The ACPA P.O. Box 850 Rocklin, CA 95677 (916) 652-8192 EXECUTIVE DIRECTOR
Penney Cowan P R E S I D E N T, BOARD OF DIRECTORS
Donna Kalauokalani, MD, MPH PAST P R E S I D E N T, EDITORIAL DIRECTOR
Nicole Kelly MEDICAL EDITOR
Steven Feinberg, M.D. EDITOR
Alison Conte SPECIAL FEATURES
Erin Hart DESIGNER
Paulette Green 2
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What is Your Pain Management Goal? by Penney Cowan, Executive Director of ACPA
Have your doctors or healthcare providers ever asked you what result you want from your treatments to manage your pain? If they did, what would you tell them? I think many doctors would be surprised by the answers they would get from a person living with pain. For instance, they might expect that we would want to be totally pain free. However, in talking to so many
Pain is Invisible There is no way to measure or to validate that pain is what you say it is. Many of us put our best foot forward when we go to our appointments. It can take us five times as long as the “average” person to get ready, drive to the appointment, and walk into the office. But no one sees the effort that it takes someone to do this, just the results. While I would not suggest going to your next appointment in your pajamas, your doctors do need to know the daily struggles you face.
people over the past 36 years, that is not what I’ve
I still remember how many times I would go to my
appointments only to hear how good I looked. My
At some point in our pain journey many of us realize that we will have to learn to live with some level of
healthcare providers could not see that my level of pain was preventing me from functioning.
pain. Reducing the intensity of the pain is what we
They did not see me trying to fold a pair of socks with
expect and what we should receive.
one hand or being unable to hold a book long
A Desire to Function
enough to read a story to my child. They didn’t know
Interestingly, when you talk to a person living with
6 p.m., allowing time to struggle to get a jar open, get
pain, you rarely hear them talk about gaining a
a heavy pot from the cupboard, or carry the plates to
pie-in-the-sky pain treatment outcome of “no pain.”
the table. They saw a person who looked normal and
What I have heard is a desire to do the normal, everyday things that most folks take for granted.
that I had to start at noon to make a dinner to serve at
Ask Me What I Need
They want to sit comfortably in a chair for more than one hour without having to get up, walk around, or lie down. They want to be able to take part in family activities, ordinary activities such as going to the movies, taking a day trip in the car, enjoying a picnic,
They never asked me about how difficult it was to take care of my family. They focused on my pain levels, going over the most recent test results, and pushing at me here and there to see where it hurt.
cooking a meal for their family, doing simple yard
My appointments focused on the pain, never on my
work, going fishing, playing with a child or grandchild,
ability to function. No one ever asked what my goals
or going out to dinner. These are not unreasonable
were. If they had, it would not have been to be pain
requests, but they aren’t every day occurrences
free. It would have been to make a simple dinner for
when you live with pain.
my family in less than six hours or just be able to fold clothes. continued on page 25
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Using Mind, Body, and Spirit to Survive any Condition by Erin Hart
Ernie Merritt poses at the Engine art gallery in Biddeford, Maine, where his chronic pain support group and UNE students had an art show, Pain Unplugged, in September 2016. 4
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Many individuals living with chronic pain focus on the body, mind, and spirit. It helps them to stay present in their daily lives, set manageable goals, and acknowledge the opportunities that their new normal reveals.
or 13 years, Ernie Merritt, 52, of Saco,
One thing that has helped is his recliner. In it, he can
Maine, worked as a pipe fitter, standing or
relax in a semi-neutral position with a special ice pack
working in tight quarters. In 1997, he was
and without his brace. It’s one of only three times a day
working at a shipyard in a confined space,
that he can remove the brace.
his body contorted for six hours straight.
At the end of the day when he extracted himself from the space and stood up, he immediately felt his back muscles tighten on one side — pain that lasted into the next day. His doctor later determined he had a herniated disc.
“Sometimes I still have a hard time accepting the fact that this is my normal,” Merritt said. “There are days when I don’t want people to know what I’m living with, and some days when I do. I tell my group members that ‘if you don’t have a cane in your hand, no one will hold the door for you.’ And some days, that’s fine. Most
In 1997, Merritt had the first of two back surgeries
of the time, I don’t want people to know, because I
that would remove affected discs. Three years later,
don’t want them to pity me.”
a third surgery fused three vertebrae with rods and
Setting Pain Management Goals
screws, but offered little long-term success. After a year, he was back in the operating room to repair the
Setting goals around chronic pain can be difficult, but
fuse. He woke up wearing a Lumbar-Sacral Orthosis
not impossible. Merritt’s biggest goals are not having
brace, or corset. Doctors told him it was needed “just to
to return to the hospital and taking advantage of low
help me heal.” Sixteen years later, he still wears a brace
pain levels to handle some chores around the house.
— and will for the rest of his life.
Although he doesn’t cook, he does the grocery shop-
Learning to Live With Chronic Pain
ping once a week. He heads out early in the morning
Merritt said he’s learned to live with chronic pain by pacing himself, adapting, and limiting his activities, especially since he has to wear a brace all of the time to reduce the weight and pressure on his spine. Although he is unable to work out at the gym, he still enjoys
when crowds are thin, parks near the entrance in a handicapped spot, grabs a cart for support, and gathers his groceries. This can be challenging, as he has to walk from one end of the store to the other, and around the perimeter, to find what he needs.
cycling on the recumbent bike he built for himself.
When the weather is pleasant, he hopes to ride his
Walking can be tricky, so he and his wife Gail make sure
bike more often, which will strengthen his legs and
there are benches nearby where he can rest. Eating can
enhance his ability to stand. He is also analyzing his
also be challenging because of the brace, so meals
household tasks to decide when he should call in
outside the home are relatively quick outings.
reinforcements. continued on page 6
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continued from previous page
Thankfully, friends and family are nearby, including his
One thing he would like to see is an in-house treatment
son-in-law Zach, who plows their driveway when it snows
center for individuals living with chronic pain to start
and helps with other tasks.
fresh, especially for those who have primarily relied on
“Do I like asking for help? No, I don’t,” Merritt said. “But as I get older, I realize that I have to stop and think a little more about what needs to be done, and what I can and can’t do. I know the old saying ‘No pain, no gain’ is not true anymore, but it has been hard to change my way of thinking.”
medication. He believes that after being on the same pain management plan, one’s body gets used to the medications, and he or she may be missing out on other treatments that could be more effective. Merritt said that medications combined with alternative treatments that are tailored to individuals would help them achieve
Envisioning the Future of Pain Management
a higher quality of life with chronic pain.
Over the years, Merritt has experimented with alternative
medications for years and years, but they’ve not had
therapies, such as acupuncture, which helped somewhat.
a holiday where they can start fresh again,” Merritt said.
He’s also tried physical therapy, but he said that the thera-
“Many of my ACPA group members have tried so many
pists he’s worked with have had a hard time tailoring his
pills that they can’t remember all of the side effects, or
treatments to his abilities. Although massage has proven
how one medicine contraindicates another. And
beneficial to many living with chronic pain, Merritt said
nowadays, doctors won’t give you a full workup anymore
he’s unable to try it because of his narcolepsy. But that
unless you are having a physical.
doesn’t mean others shouldn’t explore these alternatives,
“There is one clinic a few towns over that has a 12-step
he said, because not everyone responds the same way.
program for chronic pain, which includes exercise,
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“So many people have been on, and changed,
therapy, and pain management. Because it is an outpa-
students — from doctors and social workers to dentists
tient clinic, folks would have to find a way to get there
and occupational and physical therapists. Students not
either every day or every other day. In thinking of my own
only study (and develop) the latest research but also
ACPA group members, I know that some of them can’t
interact with people living with pain to learn how it affects
travel often or very far because it increases their pain. So,
their lives. UNE undergraduate and graduate students
it would be very beneficial to have an inpatient program
have attended Merritt’s ACPA support group meetings to
where doctors don’t encourage someone to go cold
learn firsthand about the experience of living with chronic
turkey, but instead reduce patients’ medications or
pain. They take their lessons back to the classroom and
dosages. Then the doctors can change the medications
share their insights with teachers and other students.1
and see what works for each individual patient.”
Merritt said he’s proud of his group members, who
Merritt also suggested that patients on highly addictive
have so willingly welcomed UNE students into the fold,
medications should be monitored closely to ensure that
helping educate them far beyond what they’ll learn in any
medication is used correctly and that there are no signs of
textbook. And he’s proud that they take his messages of
addiction. But that also requires healthcare professionals
positivity and proactivity to heart.
talking with one another to ensure that treatment plans are working. When that happens, Merritt said, he believes that patients will be better monitored and cared for, and doctors will have an inside track to identify any problems within the tailored treatment plans.
“Pain is inevitable, but suffering is an option,” Merritt said. “Although there is no cure for chronic pain, we have rights just as others do. This is our life, and we have to continue. “Once when we met with UNE students, one doctor said ‘mind, body, and spirit will help you survive any condition.’
So when I started presenting about chronic pain, I gave a
For the last eight years, Merritt has facilitated The Chronic
cane away and said ‘this is my spirit, and this is what keeps
Pain Support Group of Maine, the state’s only chronic pain
me going.’ Some people offer thoughts to a higher power,
support group and one of ACPA’s longest-running chap-
but this is what I do to keep my mind off of my pain. If I
ters. One message he likes to stress is the importance of
keep busy and alter my thinking, then I will get through
members being part of their own care plans. This means
the day that much easier.
they are asserting their rights, being proactive, and often,
“Each person living with chronic pain has a gift or talent,
helping to further educate healthcare providers. The
and sometimes it takes a life-altering event for this to
group has been interacting with students at the University
emerge. If people living with chronic pain can think in
of New England (UNE) since 2012, to help educate them
this manner, then they should experience positive life
with first-hand knowledge about individuals living with
chronic conditions. Four years ago, Merritt’s group agreed to participate in UNE’s campaign to research pain and educate its
“Each person living with chronic pain has a gift or talent, and sometimes it takes a life-altering event for this to emerge. If people living with chronic pain can think in this manner, then they should experience positive life changes.”
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Discovering New Strengths After Living with Pain by Erin Hart
Gerrit Bult with his wife Beth and son Jake
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here are times in life that we immerse ourselves in our passions and goals to the point where they become who we are. Then life throws a curveball and we are forced to journey down a different path than we envisioned. When this happened to Gerrit Bult, he found that with balance, he could still pursue his passions and goals, and have a far greater impact on others than he ever imagined. Sharing His Pain Story Twelve years ago, Gerrit Bult, 42, of Wilmington, North Carolina, was a personal trainer and a nationally competitive power lifter, who had never had an injury. But during a 750 lb. deadlift in a competition in 2004, Bult was nearly at the top of his lift when the clamp on one side of his weights fell off, sending the weights sliding
In the years that followed, he underwent a variety of outpatient procedures, which included nerve blocks, a stimulator implant, and working with a pain management doctor. He had another fusion surgery, but despite precautions, there were additional complications. Because of these, his CPRS spread to his abdominal area.
off the barbell. He twisted, released the bar, stumbled
“Everything changed for me from that very first
off the platform, and sat down. Once his adrenaline rush
surgery,” Bult said. “Those complications were a big hit
subsided, he felt pain in his back and his legs and real-
to my psyche, as I was not able to compete in my sport
ized he couldn’t flex his right foot. His diagnosis con-
or even do my job. It was then that I realized how much
firmed he had a broken vertebrae and a crushed disc.
of my identity had been wrapped up in what I did and
Bult underwent a successful fusion surgery on his spine. Although he had some nerve damage, he was cleared to return to competition. Four years later, the hardware in his back began causing wear to the discs above the fusion. Doctors removed it, but the operation resulted in additional nerve damage from his waist down. His days of competing were nearing their end. Bult continued to work as a personal trainer, but noticed his balance was off. Doctors found that he had broken his left ankle, and because it went undiscovered and untreated, he had also torn the tendon that supports his arch. After surgery to repair the tendon, he developed Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). He developed a staph infection; doctors couldn’t close his wound and he ended
what I had accomplished. I had an awakening — that I was so much more than the amount of weight I had lifted or the number of people I had trained in my career. My mindset began to evolve and I started to move forward in a different direction.”
Learning to Live With Chronic Pain Although his CRPS has spread into other areas of his body, Bult is doing more than he has in years. While living in Connecticut, he connected with a pain management group at Yale. Now, living in North Carolina, Bult works with a sports psychologist who specializes in chronic pain. The doctor has taught Bult “to manage and accept where I am, and figure out a way to be more productive.” continued on page 10
up having yet another surgery to remove the infection.
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We never know what someone else is going through, and I wouldn’t have realized that unless I had my own chronic pain experience. I’m so excited to be helping others through exercise and my support group. Living this life takes balance — learning to accept limitations and focus on the things we can do versus the things we can’t.
continued from previous page
Living with limitations — and accepting them — can be
“The way I got involved with the ACPA was through videos
challenging, but with the right mindset and the right
I had done about exercising with chronic pain. I love the
support system, we can stay motivated. Bult has found
fact that one of ACPA’s 10 steps in Patient to Person is
that when he is more open about his conditions, others
about exercise, although exercising was the last thing I
are likely to follow his lead. Living in a beach town means
thought of myself doing when I dove into the world of
wearing shorts, so his Ankle Foot Orthosis brace is
obvious. Bult said the brace has become an ice breaker, so other individuals he meets who are living with chronic conditions open up quickly.
“One of the things I’d like to do is reach out to — and work with — wounded warriors at Camp LeJeune, as well as those at Fort Bragg. I would love to both share my passion
He goes to the gym with his wife Beth, a nurse practitioner
for resistance training and for consistent progressive
and a women’s physique competitor. The gym environment
workouts using body weight, bands, and other methods.
is positive and supportive and it gives him an opportunity to
These are proven to help with depression, diabetes,
connect with and train individuals who have chronic pain.
weight loss, strength, and endurance. They could also
Bult said he realizes now that the personal training and
benefit from participating in our ACPA support group
coaching experience he gained after his weightlifting acci-
meetings and the tremendous pain management medical
dent — with individuals who had bad backs, pacemakers,
community and organizations in our area. I think there is a
multiple sclerosis, and other conditions — has become
great need for all of those things and it’s just a matter of
invaluable. It’s a specialty he wants to explore further.
finding people who are willing to give them a try.”
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Setting Pain Management Goals Bult said he was eager to seek additional providers who could add value to his care, as well as his physical and
insurance coverage for surgeries, as it usually involves prior authorizations, extended waiting periods, appointment scheduling, and rescheduling.
mental wellbeing. Earlier this year, he found Duke Pain
One thing he would like to see in any pain management
Medicine at Duke University Hospital in Durham, North
program is a psych evaluation every two or three years for
Carolina, one of the best teaching hospitals in the United
enrolled individuals. He believes this would encourage
States for CRPS. Since connecting with Duke, he has
doctors and patients to really get to know each other,
reduced his medications and taken advantage of physical
chart the best course of treatment, and help legitimize
therapy, a CRPS support group, and a men’s chronic pain
medical records. In addition, this would allow doctors to
provide guidance on areas for personal improvement, as
Bult is optimistic about the advances Duke Pain Medicine has made to further study nerve damage, chronic pain,
well as things that individuals and their healthcare teams can work on together.
and CRPS. He’s also optimistic about his own future, which
Bult would also like to see more of a focus on combining
includes being completely off medication.
medication with alternative treatments, such as yoga and
But the future begins with small goals, such as getting through the day. And sometimes that includes extra planning, especially on outings with his 3 ½-year-old son Jake, who has boundless energy. So Bult plans his days with prioritized to-do lists. When his body is done, he is done — and that’s OK.
massage. When he first encountered chronic pain, he wasn’t as open to seeing a mental health professional or trying alternative therapies. But as he became more desperate to manage his pain, he was more willing to experiment with acupuncture, acupressure, and pinpoint injections. The key, he said, is to be less desperate and more open minded.
Bult said he is grateful for the extra time that chronic pain has given him with his son — something that wouldn’t have happened if he was still working as a personal trainer.
Changing Mindsets Initially, none of the pain support groups Bult found
“I realized recently that I am in the place that so many
targeted current or former athletes. But the more he
people talked about when I entered this journey — that
talked to people, the more he learned of stories similar
after a time period, their CRPS got better. I couldn’t
to his — and found common bonds. This helped him start
comprehend those long-term predictions when I was
an ACPA chronic pain support group in Wilmington, which
barely making it through the short term. But I realize now
now has three members.
that I can have those long-term goals,” he said.
These three men venture out to community events to share their stories and encourage others to share theirs.
Envisioning the Future of Pain Management
They’ve learned through their experiences not to judge
Bult appreciates the way Duke runs its pain management
may not mirror what’s felt inside.
program, which has made him feel very comfortable and confident. But the national opioid overuse and abuse epidemic is making it increasingly hard for chronic pain patients like him to get necessary pain medications. Dealing with the nation’s healthcare system is also challenging for chronic pain patients, especially when it comes to
anyone’s pain, because what one sees on the outside
“We never know what someone else is going through, and I wouldn’t have realized that unless I had my own chronic pain experience,” Bult said. “I’m so excited to be helping others through exercise and my support group. Living this life takes balance — learning to accept limitations and focus on the things we can do versus the things we can’t.”
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BARRIERS PUT PAIN RELIEF OUT OF REACH Half of people with pain surveyed canâ€™t get the medications they need; 47 percent have thought about suicide
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e know that people who live with chronic pain must often fight to get a diagnosis, treatment, or to simply be heard. In a survey that the American Chronic Pain Association (ACPA) conducted in September 2016, we found that half of the respondents had to overcome barriers to get their prescribed pain medications, from both the pharmacy and with their healthcare provider, and have used the emergency room to seek relief for their pain. In addition, a total of 47 percent of respondents said they have contemplated suicide. For 100 million Americans who are living with pain1, opioids are powerful analgesics which, when prescribed appropriately, can be effective for many types of pain, allowing them to live productive lives.2 However, in recent years, public health authorities have focused on increased death and disease associated with opioid abuse.
They are trying to solve this problem by reducing opioid prescriptions. The American Medical Association has encouraged physicians to seek alternative sources of pain treatments to treat their patients.
Individuals Unable to Get Vital Medications “Since the push to combat prescription medication abuse has risen, so have the number of calls we have received from individuals expressing their frustration about accessing their prescription medications,” said Penney Cowan, founder of the ACPA. “We conducted a survey to assess how large of a problem this is. The study found that access really is an issue for individuals; they struggle to find doctors who are willing to treat them, and to find pharmacies that stock their medication. “For individuals living with chronic pain, access to medication is vital to functioning in their everyday lives. Doctors would not withhold prescriptions from patients with other
medical conditions such as diabetes or heart disease. What’s startling is the high percentage of individuals who have contemplated suicide.” “The FDA Opioid Action Plan identifies the importance of balancing the societal risk of opioid misuse and abuse with access to effective medications for patients living with chronic pain,” said Donna Kalauokalani, MD, MPH, pain management specialist and ACPA board member. “We believe abuse-deterrent formulations of opioids can help provide individuals with pain access to treatment options while deterring potential misuse or abuse. We must not lose sight of the importance of treatment options for those individuals who legitimately need them.” Full results from the survey will be presented at future conferences. The survey was made possible in part by an unrestricted grant to the ACPA from Egalet. 1 National Institutes of Health 2 American Academy of Pain Management
Many Blocked by Doctors, Pharmacies The ACPA survey received responses from 1,001 individuals. Results showed that: ✽ 56 percent have had issues/difficulty obtaining a prescription for their pain medications ✽ 39 percent say their physician no longer prescribes pain medication and 38 percent say their physician is not prescribing their specific medication ✽ 63 percent said their pharmacy carries only a limited supply of medication and 28 percent said the pharmacy does not carry their medication at all ✽ 30 percent have gone to the emergency room seeking relief for their pain ✽ 70 percent say that they are not concerned about the possibility that their medications could be used illegally by family or friends.
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TREATMENT OF PAIN IS A WORLDWIDE CONCERN Two years ago, the ACPA reached out to the international pain community to create the International Pain Management Network (IPMN). IPMN is a committee of people devoted to advancing awareness, understanding, and pain care management throughout the world. The organization recently launched a website, www.ipmnetwork.org, made possible through an unrestricted educational grant from Teva Pharmaceuticals.
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A Global Survey About Pain and Perception In 2016, the IPMN conducted a survey of 622 people around the world with chronic pain about their pain management, access to care, and attitudes of their healthcare providers and others about pain. These are the results through June 2016, with additional data still forthcoming. The IPMN will use the results to educate professionals and the public through videos and presentations. Among those surveyed, 97 percent had recurring pain for more than three months and half had pain for more than 10 years. Ninety percent have a diagnosis; 70 percent are 45 or older; and 78 percent are women. They live in cities, towns, and rural settings, with a wide range of income status. Here is how they responded when asked how they treat their pain:
✽ 56 percent used opioids such as morphine or codeine ✽ 75 percent used prescription medications other than opioids ✽ 57 percent used over-the-counter medications ✽ 42 percent relied on injections More than 25 percent mentioned using acupuncture, chiropractic, hypnosis or counseling, herbal therapies, physiotherapy, surgery, or massage. Just 14 percent said they treat pain with marijuana.
Access to Care and Coverage When asked who they rely on to treat their pain:
✽ 60 percent use a general practitioner or primary care physician ✽ 47 percent use a pain specialist ✽ 32 percent use a neurologist
Others worked with internists, psychiatrists, medical oncologists, orthopedic surgeons, or rheumatologists. Those surveyed paid for their pain treatment with private insurance, through the national health service, personal income, or a combination. Some commented that it is very hard to pay for care when their insurance doesn’t cover medications or specialist care. About half of respondents have encountered difficulties obtaining prescriptions for pain meds. This often results in their going to the hospital or using over-the-counter drugs. Sixty-seven percent of those surveyed managed their pain with relaxation practices, while nearly half used breathing techniques or regular exercise. Others used music or art (33 percent), peer support groups (32 percent), goal setting (19 percent), or yoga (18 percent). continued on page 16
Attitudes on Pain Seventy-five percent of international respondents believed their doctor takes their pain seriously, while just 20 percent feel their doctor is understanding about their pain. Respondents said these statements reflect the public attitude toward pain: ✽ Pain is something that everyone endures at various stages in life — 51 percent ✽ Pain is a serious medical condition that warrants medical attention or treatment — 37 percent ✽ Pain is something that you should not complain about — 29 percent ✽ Pain should be self-managed — 18 percent ✽ Pain should be treated — 7 percent When asked if they had ever contemplated suicide because of their pain, 45 percent said yes and 55 percent said no.
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International Pain Management Network at Work The IPMN members are already active in pain management organizations and research across the globe, but are now working together to make a difference on an even larger scale. They strive to improve pain care, understand the problems individuals are facing, and change attitudes about pain worldwide. Here are the current IPMN board members:
Jolanta Bilinska is plenipotentiary director of development and social communication at the Dr. K. Jonscher Municipal Medical Center in Lodz, Poland. Since 2005, she has been the champion leader in World Alliance for Patient Safety. In 2006, she established the Patient Safety Foundation. She is also chairman of the board of the International Alliance of Patients Organization (IAPO).
Penney Cowan is the founder and executive director of the American Chronic Pain Association. She served as Consumer Representative for the FDA/CDER Anesthetic and Analgesic Drug Products Advisory Committee for 2012 and was appointed to Interagency Pain Research Coordinating Committee of the National Institute of Health from 2013 to 2015.
Eva Maria Ruiz de Castilla is Consultor Independiente en Politicas Sociales and has been a member of IAPO’s Global Governing Board since 2010. She has had an extensive career promoting and lecturing about patientcentered healthcare around the world.
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Hussain Jafri is the secretary general of Alzheimer’s Pakistan, a national association that he founded in 1999. He is currently the vice chair of the Advisory Group of WHO’s Patients for Patients Safety Program. Hussain also founded Pakistan Patient Safety Initiative. Regina Mariam Namata Kamoga is an executive director for Community Health and Information Network for Uganda, an organization that promotes the empowerment of people living with, and affected by, HIV and AIDS, and non-communicable diseases.
Jane Meijlink is the founder and chair of the voluntary, non-profit International Painful Bladder Foundation. She has been a voluntary advocate and representative in this field since 1993 when she co-founded the IC patient movement in the Netherlands.
Matthias Wienold, MD, MPH, serves on the board of directors of the Cluster Headache Support Group Inc. in the U.S. He has been active in patient education and empowerment since he was a medical student in the 1980s, advocating for patient participation in clinical research and drug regulation.
ACPA support groups around the country shared our mission with members of their communities for Pain Awareness Month in September.
A L A BA MA Cindy Murphy, facilitator of the Andalusia, Alabama, support group, hosted an ACPA information table at Andalusia Health Hospital, on Sept. 24. She said about 100 people stopped at her table. She also wrote a column for the Andalusia Star News that said:
To live well in spite of chronic pain problem, you need to be a well-informed consumer. The ACPA support group meetings are to aid those with these chronic conditions, in learning how to cope and not just look at yourself as a â€œpatient,â€? but find your way back to becoming a PERSON.
VIRGINIA Kate Lewis, facilitator of the Alexandria, Virginia, support group, helped spread awareness of ACPA among more than 250 physicians and clinicians at the American College of Clinical Thermology Conference, Sept. 10 in Washington, D.C. It was her first time representing the ACPA to the medical community and as she shared her passions for pain management she learned a lot in return. Kate is standing with Dr. Husamettin Kucuk.
NORTH CA ROLINA Gerrit Bult, facilitator of a support group in Wilmington, North Carolina, joins his group members and their families at the Healthy Living Fall Fest in Wilmington on Oct. 1. About 1,000 people attended this event, which had almost 100 booths. There was a lot of interest, and they talked with many people living with chronic pain. continued on page 18
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VA N N U YS , CA L I FO R N I A ACPA was among the sponsors at the 10th Anniversary USC Quench the Fire 5K/10K Run~Walk~Roll and Expo on Oct. 16 in Van Nuys, California. Quench the Fire is an organization that supports education, research and management of Complex Regional Pain Syndrome (CRPS) / Reflex Sympathetic Dystrophy (RSD), and neuropathic chronic pain diseases. The event raised more than $10,000. There were 469 registered race participants with many more in attendance. The 29 vendors included Support Fibro, an international support fibromyalgia network, RSD-CA, Boston Scientific, Medtronic, Neuro Drinks, and Nature's Bakery, according to Suzanne Miller, Co-Coordinator, USC Quench the Fire at quenchthefire.org.
LOS A N G E L E S , CA L I FO R N I A Four ACPA facilitators attended the For Grace Ninth Annual Women in Pain Conference, "Pain Takes a Vacation: Actions and Strategies that Get Us Away" on Sept. 23 at California Endowment's Center for Healthy Communities, Los Angeles. Hosting the ACPA information table are, from left: Mary Scribner, Pasadena group; Lisa Hahn, Claremont group; Claudia Welch, Harbor City group; and Tom Norris, North Hollywood and Northridge Hospital groups. It was attended by about 100 women who live with pain and their caregivers. Others viewed the event through a live webcast.
CHRONICLE | DECEMBER
Learning from the Patient to Person Workbook and Each Other by Patti Mehaffie, Support Group Facilitator, Fort Myers, Florida
When the Fort Myers support group first assembled, we had all received care from many healthcare professionals, but we were missing the information and tools needed to cope with pain on a daily basis in our personal lives. So we turned to the ACPA workbook, Patient to Person: First Steps. This manual made my job as a facilitator so much easier. The topics were relevant and the content covered information everyone in the group was interested in. The material comes from a reliable source we all trust. Each topic covers general information as well as practical ideas and tools that people with pain can use. Some of the most popular topics in Patient to Person were managing emotions and attitude, communication skills, managing stress, and learning relaxation. One of the great things about facilitating a group is that you are learning and helping yourself while helping others. My members often say how helpful is it to be with other people who understand what they are going through. Knowing the group is here helps them feel less alone. After we completed the manual, I asked the group members when they learned from the manual and how being in the support group has changed their lives. Here is what they said.
y pain! t alone in m o n I’m at p has learned th ion the grou Firstly, I’ve he informat T ! e m r ions, fo st e ie g g ts, sug That’s a big able. The hin lu va ea in is av h s u r it’s OK to provided fo me realize d e lp the e f h o e st av t the re and ideas h d again. Bu an w o elf, n ys ry e m ev to pace “pity party” arning how le t n e ing sp th e ry b lish eve time should to accomp y tr t o n my f d o s, an aware set prioritie ay. I’m more d e n o e in g t o lis d heedin th on my to-d my body, an to g in n te ain, lis . body and p exhaustion of pain and s m sympto my mily night, p held a fa u ro g st rt ju o t p sup I’m no When the aware that re o m h. e uc ecam ay on the co husband b the whole d d en r sp ei I th n whe affected “crying wolf” eir pain has th w ho ow rs N othe bers. I heard from family mem tionships with la re r ei th d l. lives an ed individua not an isolat I know that I’m
Linda The chronic pain support group has assisted me in learning to pace myself and prioritize the activities I wish to participate in. I am becoming more attentive and assertive, yet kind, as a person and as a patient with my healthcare professionals. Retirement and my pain caused my depression, because I lost my income, close relationships, and feeling of accomplishment in my life. The support group has helped me to acknowledge these feelings and learn to handle them.
Judy The meetings have made me aware of the many factors involved in chronic pain and how to manage it. It has been helpful to learn how people with pain find new activities to substitute for those they can no longer do. When I have pain flare-ups in the future, I feel I will be better prepared to deal with them.
Diane I’ve learned to look at my day-to-day pain differently, being more accepting and following the necessary steps to get through it. I try to manage my emotions, attitudes, and basic living routines. The group meetings have taught me that many people have chronic pain and in a variety of ways. Sharing with each other provides valuable information for coping and gives personal support. The open discussions on scheduled topics have been extremely helpful.
Connie Day-to-day, what I’ve learned has reminded me of what I can do. Although I’m still limited, I feel ready to challenge myself in areas that I didn’t think I could do before. Overall, I can’t even begin to list all of the things I’ve learned. The physical, emotional and personal issues are all important. I have learned so much about other types of chronic pain. I can truly say that I have never left a meeting disappointed, but rather I leave very grateful to have such a group to belong to. CHRONICLE | DECEMBER
Board Member Profile:
JONATHAN COHEN by Alison Conte, Editor, The Chronicle
These interviews are intended to give our readers more insight into the interests and contributions of our valued ACPA board members.
onathan Cohen believes medical students should understand the person behind the patient, particularly for people with chronic pain. And he’s not waiting until he is a doctor to follow through with this belief; he is starting now. Cohen is an MD/PhD student at the University of Pittsburgh School of Medicine and Carnegie Mellon University in Pittsburgh, Pennsylvania. Following this unusual academic program, he is planning to graduate with a PhD, and then go on to get his MD, over a period of seven to nine years. As part of his studies, he participated in clinical research at the neurosurgery department of the University of Pittsburgh Medical Center and learned about trigeminal neuralgia facial pain. This sparked an interest in other kinds of pain and a connection to Penney Cowan and the ACPA. “I began to think about ways to help medical students understand pain and further assist our patients,” Cohen said. “We need to go beyond learning to be doctors; we need to learn what it is like to be a person in pain.” He worked to develop a mobile phone app to help people with trigeminal neuralgia manage their pain and communicate with their doctors, and asked his adviser to put him in touch with others in pain organizations. “Penney and I had a series of long conversations and she always emphasizes the person, not their pain. They don’t teach that in medical school, but Penney is teaching it every day,” he said. “This really got me interested in changing attitudes, particularly among students and the way they think about chronic pain.”
CHRONICLE | DECEMBER
Cohen started a free, student-run, pain clinic for underserved people in the community. He invited a range of students from across the healthcare professions, including physical therapy, occupational therapy, and physiotherapy, as well as medicine. Physicians also serve the clinic population, but the students learn to take comprehensive histories and talk with the people who come for treatment. “They learn about each person’s functional goals, expectations or depression, and quality of life. It’s important to find out what other sources contribute to their pain,” he said. “This is a great experience for the students.” Cohen joined the ACPA board in spring 2016 and was impressed with the mix of professionals from so many fields that the ACPA has brought together. “I hope to be a student voice of the ACPA approach to care. The doctor’s way is not the only way to approach care; it takes a team.” He appreciates the way the ACPA emphasizes alternative treatments, stress reduction, and physical activity as part of pain management. “These need to be a larger part of the medical school curriculum. This is something for me to bring back to the faculty and get the students involved,” he said. “We can use the ACPA resources and implement the tools. I’d like to help spread the ACPA mission to the academic and research community of medical and health scientists.” When not studying, Cohen enjoys playing jazz piano and exploring Pittsburgh. “Doctors may have a set perspective, but students are still malleable in terms of medicine,” he said. “They can appreciate the value of understanding the whole person, the physical and emotional components to pain.”
Medical News to Know
Researchers Rate Alternative Approaches for Pain
Drug Purchasers: Watch Out for a Phone Call Scam
The National Center for Complementary and Integrative
Since 2008, hundreds of people who have purchased
Health (NCCIH) at the National Institutes of Health published a
prescription drugs over the internet or by telephone may be
new review of complementary health approaches that may be
subject to a scam phone call by individuals posing as FDA
safe and effective for common pain conditions in the United
and DEA agents.
Visit the ACPA’s website to view a video of FDA pharmacists
This review, released in Mayo Clinic Proceedings in September,
discussing what you should do if you receive this type of call.
focused on United States-based randomized controlled trials.
These impersonators will call, pretending to be an FDA special
They were for seven popular complementary health approaches
agent. They will claim your drug purchase is illegal and
used to treat five painful conditions — back pain, osteoarthritis,
threaten arrest if a fine isn’t paid. They may threaten you with
neck pain, fibromyalgia, and severe headaches and migraine.
physical harm if you don’t pay the fine immediately by making
The researchers sought evidence on the usefulness and
a wire transfer to an account in another country.
safety of acupuncture, spinal manipulation or osteopathic
You should ignore the call and hang up. No federal agents
manipulation, massage therapy, tai chi, yoga, and relaxation
will ever contact you by phone or demand money. Only a
techniques including meditation. They also researched
court can do this. You can report the threat by calling
selected natural product supplements, including chondroitin,
1-877-792-2873 — but the FDA cannot help you retrieve your
glucosamine, methylsulfonylmethane (MSM), S-adenosyl-L-
losses, so do not pay any so-called fines.
methionine (SAMe), and omega-3 fatty acids. The authors found that these techniques for complementary treatments were more promising for certain conditions: ✽ Acupuncture and yoga for back pain ✽ Acupuncture and tai chi for osteoarthritis of the knee ✽ Massage therapy for neck pain, when receiving several sessions and sufficiently long duration ✽ Relaxation techniques for severe headaches and migraine In addition, although the evidence was weaker, the
Buy Medications Online — Safely Buying medicines online can save money, but it can be dangerous. The Food and Drug Administration’s BeSafeRx – Know Your Online Pharmacy website can help you avoid the risks and tell the fake online pharmacies from the real ones. Fake online pharmacies use fancy marketing efforts or phony web storefronts to appear legal. You should confirm that an online pharmacy is licensed in the United States.
researchers found that massage therapy, spinal manipulation,
If you buy medicines from these fake websites, you may
and osteopathic manipulation may aid some people with back
be putting your health at risk because the products may
pain. Relaxation approaches and tai chi may help people with
contain the wrong ingredients, or too little or too much of
the active ingredient. They might include other harmful
The review was to provide relevant, high-quality information for primary care on the frontlines of helping patients manage pain. Nahin RL, Boineau R, Khalsa PS, Stussman BJ, Weber WJ. Evidence-based
substances. You might not get the therapy you need, or worse, you could experience unexpected side effects and harm your health. So before purchasing medicines online, protect yourself and
evaluation of complementary health approaches for pain management in
your loved one by using the BeSafeRx – Know Your Online
the United States. Mayo Clinic Proceedings. September 2016;91(9):1292-
Pharmacy tools and resources.
CHRONICLE | DECEMBER
My Life with Chronic Pain and a False Diagnosis for Addiction by Patricia Young
have chronic pain. I also have an unwarranted label of “addict”
I am not that person, but that is how I am treated. The medical
imposed on me by doctors. My chronic pain is the result of a
system that I worked for as a nurse for 35 years has mislabeled me
lower back injury and two resulting back surgeries. But the
and treats me harshly at a time when I need care.
What makes matters worse, it was never explained to me that this
many people to make snap judgements. Like the hospital staff that
diagnosis was in my medical record.
threw me out of the emergency room, other medical people
inaccurate diagnosis of chemical dependence, substance use disorder, or opiate dependence that follows me on my pain
management journey is even more harmful to me.
I was taking opiate pain medicine, prescribed by my doctor, to treat the chronic pain from my back injury and surgery. Despite these prescribed drugs, I would have severe pain flare up in my left hip,
This misdiagnosis could also affect a person’s mental and emotional health and cause family problems. I know it has affected me that way. Even though I realize that this is just a medical error, it causes
demonstrated their anger by tone of voice, gestures, and attitude. I felt hopeless leaving there and my husband was stunned. It was a very dark time in my life that has become difficult to forget. It has led me to distrust the very physicians I have to go to for help
groin, and leg. One time, when I sought help at an emergency department for a flare up, I was seen by a physician assistant. He looked at my record
now. My blood pressure is usually high at the doctor’s office, but not at home. They suggest I am suffering with PTSD and anxiety.
and, as I lay there on the gurney, told me to get up and leave the
I strongly believe that there needs to be a change. I think there
hospital. My husband and I could not understand why three security
needs to be more understanding within the medical community
guards were called. They told me to get back in my wheelchair or
as well as by the public. Healthcare workers need to differentiate
they would pick me up and put me there.
between a physical dependence on a medication, a substance, and
I was 59 years old and disabled and no threat to anyone! It was at that point that I started to wonder what “red flag” was in my medical record that was prompting this inappropriate and rude response. Eventually I found out that a different medical doctor had
an addiction to it. Otherwise they are doing harm to their patient. An addiction diagnosis suggests that a person has misused drugs and did this to themselves. I have been judged, wrongly, as one of these people.
written down “history of addiction” as one of my diagnoses and it
When medical professionals congratulated me for stopping my pain
was showing up in the hospital records.
medications, I didn’t understand them. It is not an achievement.
I gathered all the medical records with the healthcare providers involved in my back injury and found no mention of this. I still can’t
Stopping my medications was not easy and I suffered physically, which is normal when you have taken opioids for a long time.
understand why no medical person had ever even mentioned the
It’s time to stop hurting and stigmatizing people with pain and
word “dependency” or questioned this diagnosis, despite the fact
patients in this manner. It just makes their pain experience worse
that I was still being prescribed pain medication during this time.
and can even lead to serious mental health problems and in some
When I moved to another state to avoid the harsh winter weather
I could not find a primary care physician (PCP) that would accept me
I ask all healthcare providers to make sure your diagnoses are
as a patient. Then I had a medical emergency and could not get help
made correctly, and to confirm that previous diagnoses that you base
until I was admitted to the hospital weeks later. I believe no medical
your recommendations on are correct. I believe that an addiction or
doctors wanted me as a patient when they saw that misdiagnosis,
dependency diagnosis should only be made by someone who is
“history of addiction.”
trained in the field, and specializes in treating addictive disorders.
We all know how difficult it can be to deal with a drug addiction. I did not have this problem, but they did not know that. Some emergency
The ACPA believes that the use of opioids or any medication is a
departments will not take pain symptoms seriously with this on your
medical decision between the person with pain and his or her healthcare
medical record, accurate or not. This is dangerous. Medical doctors
provider. We endorse a balanced approach that includes a variety of pain
see me as untrustworthy because they know most addicted people
management therapies and is not limited to medication or surgery.
are considered to be in denial if they disagree with their diagnosis.
CHRONICLE | DECEMBER
Birth of a Self-Care Vigilante: Tap into the Universe for Recovery: Book One By Ilana Kristeva, Vibrance Coach and “Self-Care Vigilante” Review by Tara White, RN
I am enormously impressed by Ilana Kristeva and the
Keep the Natural Flow of Bodily Energy
incredible work she has done to turn her life around. She
Ilana explains that Tapping refers to accessing the meridian
has gone from being wheelchair bound and in pain from
systems of our bodies, which are close to the surface of the
Chronic Regional Pain Syndrome (CRPS), among other
skin. We can touch and connect with them without surgery.
serious health issues, to a fully functioning Vibrance
By doing this, we increase the positive flow of energy, im-
coach and author.
prove blood circulation, stimulate the production of new
We attended the same ACPA group where she had been a long-time member, attending when she could get a ride and wasn’t in too much pain. I, too, have CRPS, although to a lesser degree. I benefitted immensely from working with her, coming away with a wonderful toolbox full of ancient Eastern practices. I strongly believe that any person with pain who feels as though they are “stuck” in their position in life, could benefit greatly from this material. Ilana shows wisdom and is eager to share all she has learned in her own pain journey with great hope and a keen sense of humor.
cells, and restore our bodies to health. Progressive Energy Field Tapping (or Pro EFT) uses both hands to tap on each side of the body to promote greater balance, harmony, and healing. This can be done while we are affirming our bodily health and make statements such as these:
✽ “Even though there is still a part of me that wants to be right because I know what I am doing, I want to let go of my thoughts, words, and actions that keep me stuck in the hamster wheel. I deeply and completely love and accept myself.”
✽ “I choose to allow an amazing source of love and light to grant me solid courage to live each day and care for my
Comedy always makes things more interesting. This book is
soul and those of my loved ones, both when we are
not only a joy to read, but the endorphins from laughing
awake and while we are asleep.”
alone will also make you feel better! Moreover, reading
✽ “I choose to carefully listen to my internal organs and
about her crazy journey will give even the most affected
allow my intuition to guide me so that I can feel fantastic
hope for exciting new possibilities.
in my body, honor my presence on this planet, and share
Connecting to the Universe
my laughter and vibrancy with others.”
I love her idea of tapping “into your connection to the
The author recommends that you pay attention and nurture
Universe’s unlimited source of energy, knowledge, and
your body, mind, and spirit connection so that you may thrive
forgiveness.” She has new perspectives on overcoming
in all ways throughout your stay on this planet.
health challenges, saying that hope abounds. “No matter
Flow with Wisdom
what is happening around you, you can take action in securing
Her favorite four-letter word that begins with the letter “F”
physical and emotional comfort, safety, and stability in your
is “Flow”, which stands for “Feeling Light Offering Wisdom.”
own body.” I also love the way she sprinkles a reminder to breathe deeply throughout her messages.
I also just love her description of vibrancy as “the glow of the dancing flame in our soul that shines within us so
The thoughts we allow to flow through our minds really
brightly that people can see it from the outside.”
do make a significant difference in our health and overall quality of life. Ilana says to get out of the vicious cycle of pain, we must treat the mind, body, and spirit simultaneously rather than concentrating on pain medicine or
Birth of a Self-Care Vigilante: Tap into the Universe for Recovery: Book One; Ilana Kristeva, 254 pages, $14.99, ISBN# 0996303766
procedures alone. CHRONICLE | DECEMBER
New Gr ups TM
Welcome to our new groups and facilitators.
Batavia, OH (VA only)
Victoria Irizarry and Cindy Wilkins
Donson Williams and Teresa Langford
Lakeland, FL (VA only)
Cincinnati, OH (VA only)
Ana Tal Winston Salem, NC
For contact information for any support group facilitator, please call 800-533-3231. 24
CHRONICLE | DECEMBER
In Honor of Fred Purello
In Memory of Norma Lee Hagler
Ralph and Camille Lucanie
In Memory of Doria Danowski
In Memory of Kathleen Cowan
Dollie Hunt Jessica Petree
Scott and Penney Cowan
In Memory of Byron Freeman Given by Eric and Sue Simonsen
continued from page 3
What is Your Pain Management Goal? Of course, I never told them, never even thought about
Perhaps this is because we allow our pain – and our desire
sharing the difficulties I was having with simple tasks.
to regain functioning – to remain invisible. We must begin
Perhaps I should have made my needs known, but I do not think that I realized how important my needs were in
to shine a light on our pain and on our fight to live well in spite of it.
context of my overall treatment goals. Forty years ago,
Have you ever talked to your healthcare professional
I did not know anything about pain management. I was
about your vision of successful treatment? Ask yourself
unsure of myself. When I did have a good day, I questioned
what one activity you would want to be able to do again.
the reality of my own pain.
Then tell your provider and mark that as a fresh start in
It took me six years of searching – and completing a pain
your treatment plan. I wish I had.
management program at the Cleveland Clinic – to realize that I do have some control of over my pain, and that even my smallest needs are important. I have learned a great deal since I began my journey to regain control of my life. Now I know the little things in life are most meaningful.
Changing the Way Society Views Pain In this issue of The Chronicle, we report on surveys of people with pain around the world and what members of ACPA support groups have learned from each other. You will notice that a significant percentage of people with pain believe that providers and other members of society are not understanding about pain, don’t take pain seriously, or don’t believe it is a medical condition that deserves treatment. Almost one-third said that the public thinks
Season’s Greetings from Our Family to Yours!
pain is something that you should not complain about.
CHRONICLE | DECEMBER
Thank You! CHAMPION
Allergan Lilly McNeil Consumer Healthcare Pernix Therapeutics
Pfizer Purdue Pharma L.P. Shionogi Inc.
3M Ameritox Medication Monitoring Solutions Centrexion Therapeutics Collegium Pharmaceutical Depomed
Egalet Highmark, Inc. Kaleo Mallinckrodt Pharmaceuticals Sanofi
Folsom Pain Management
The ACPA is a peer support organization: we help each other learn to live fully in spite of chronic pain. Your donations and purchase of materials keep the ACPA alive and reaching out to even more people with pain.
CHRONICLE | DECEMBER
Our Mission â?‹ 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. â?‹ To raise awareness among the healthcare community, policy makers, and the public at large about issues of living with chronic pain.
theacpa.org CHRONICLE | DECEMBER
Published on Dec 6, 2016
The ACPA Chronicle is a newsletter for people who live with chronic pain. In this issue, we “Shine a Light on Living with Pain.” The America...