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APRIL 2017
National Pain Conference
A Balanced Approach to Pain Management For people with pain, those who treat them, and medical students
May 20, 2017 • Pittsburgh
3 Is all Pain Equal? Considering Disparities in Healthcare 6 Finding Purpose Through Pain 14 Living with Postherpetic Neuralgia
Details on page 18
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TA BLE O F CO NTE NTS
Features
3 Is all Pain Equal?
4 6 10 14
Considering Disparities in Healthcare Many Factors Affect How Doctors Treat Pain Finding Purpose Through Pain The Gifts and Challenges
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The Chronicle is published three times a year by the American Chronic Pain Association. We welcome essays, poetry, articles, and book reviews written by people with chronic pain or their families.
When a Touch Causes Pain:
16 Sharing ACPA Resources Through
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Living with Postherpetic Neuralgia Social Media Networks
Departments
18 ACPA Update 19 Support Groups Share Pain News Across Cultures 20 Howard and Norma: 22 New Groups and Facilitators 23 Tributes 24 ACPA Supporters
Married to Each Other and Fibromyalgia
The ACPA P.O. Box 850 Rocklin, CA 95677 (916) 652-8192 E X EC UTI VE D IRECTOR
Penney Cowan PRE S I DEN T, BOARD OF D IRECTORS
Donna Kalauokalani, MD, MPH PAST PRE S I DE N T, E DITORI AL DI RECTOR
Nicole Kelly MEDICAL EDITOR
Steven Feinberg, M.D. EDITOR
Alison Conte SPECIAL FEATURES
Erin Hart DESIGNER
Paulette Green 2
CHRONICLE | APRIL 2017
Is all Pain Equal? Considering Disparities in Healthcare by Penney Cowan, Executive Director of ACPA
Each of us thinks of different things when it comes to healthcare disparities. Some think only of race, religion, orgender,while others consider the disparities in care experienced by people of certain ethnic origins. When I looked up the definition of disparities on the Healthy People 2020 website, I found this: Healthy People 2020 defines a health disparity as a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. Health disparities
In 2000, Dr. Todd conducted a subsequent study of fracture treatment in African-Americans and non-Hispanic whites and found strikingly similar disparities in analgesic prescription and administration. Though these studies are not recent, disparities have not improved in the last 17 years. In many areas they have become much worse, according to what we continue to hear from people who reach out to the ACPA. Does it really matter what color our skin is, what language we speak, or where we come from? When we are in pain, all we really want is to be believed and feel relief from the pain.
adversely affect groups of people who have
As I travel, speaking to and meeting with people
systematically experienced greater obstacles
with pain, providers, and researchers, I find that
to health based on their racial or ethnic group;
“pain is what one says it is.” This is true even at the
religion; socioeconomic status; gender; age;
international level. The bottom line is that our pain
mental health; cognitive, sensory, or physical
needs to be believed and treated appropriately no
disability; sexual orientation or gender identity;
matter who we are, where we come from, our race,
geographic location; or other characteristics
ethnic background, or native language.
historically linked to discrimination or exclusion. We have often heard that women who are reporting
Disparities Further Limit Access to Care
their pain to doctors are not taken as seriously as
Today we struggle with two problems: disparities in
men reporting the same pain. But if you think about
care and access to care.
it, everyone living with pain has to overcome the enormous stigmas that are attached to chronic pain, and have their particular situations taken seriously by their healthcare providers.
Studies Show Racial Disparities Research has shown that minorities and people of color have an added burden when they seek treatment for pain. In 1993, Knox Todd, MD, conducted a study in an inner city emergency room. He reported
It seems that no matter who you are, you can find it impossible to get appropriate pain care, pain care that is comprehensive and meets individual needs. We must establish more interdisciplinary pain centers that offer a complete approach to helping people with pain reduce suffering, increase function, and improve their quality of life. This can certainly help address these health disparity obstacles.
that Hispanics with isolated extremity long-bone
You can read more about the disparities in pain on
fractures were twice as likely as non-Hispanic whites
page 4. We have also featured the experiences of two
to receive no analgesics during their emergency
of our support group facilitators starting on page 6.
department care. CHRONICLE | APRIL 2017
3
Many Factors Affect How Doctors Treat Pain by Alison Conte
Because healthcare providers are also human beings, they may not treat all patients the same. Studies have found that your gender, age, race, ethnicity, or other factors can affect how you are treated when you ask professionals for help with your pain.
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These disparities in pain care can lead to less medication
Minorities tend to receive less treatment for pain than
and less pain relief, worse diagnoses and pain manage-
whites, and suffer more disability as a result, according
ment, leading to a lower quality of life.
to an article in the New York Times.2
“The research shows minorities, women, and the
The article quotes Salimah Meghani, a pain researcher at
elderly with pain are less likely to get attention, be
the University of Pennsylvania, who analyzed 20 years of
properly assessed, and optimally treated by clinicians,”
public research. She found that African-Americans were
said Dr. Carmen Green.1 She is Associate Professor of
34 percent less likely than whites to be prescribed
Anesthesiology at the University of Michigan Medical
opioids for conditions such as backaches, abdominal
School at Ann Arbor and Attending Physician at the
pain, and migraines, and 14 percent less likely to receive
University of Michigan Back & Pain Center.
opioids for pain caused by traumatic injuries or surgery.
CHRONICLE | APRIL 2017
Breakdowns in patient-doctor communications may be partially responsible for disparities in pain treatment Additional research3 found that African-Americans have
“Depending on where they live, people may be less
significantly lower odds than whites of receiving opioids
likely to have their opioid analgesic prescriptions
when they visit an emergency room for “nondefinitive”
filled because their local pharmacies don’t carry the
back or abdominal pain.
medications they need. Overall, minorities are at risk
Blacks Have Less Incidence of Opioid Addiction According to the Centers for Disease Control and Prevention, in 2014, 71 out of every million white Americans died of overdoses involving prescription opioids, compared with 33 out of every million African-Americans. Have African-Americans been spared from opioid addiction? Opioids are not always the best way to manage pain, but most experts feel that treating people differently based on race is not the way to end the crisis.
for lesser quality care,” said Dr. Green. Breakdowns in patient-doctor communications may be partially responsible for disparities in pain treatment, particularly in the way people prepare for a doctor’s visit. “People in pain and their families can get better care if they prepare for their visit by recording pain intensity and any associated symptoms,” Dr. Green added. In this issue of The Chronicle, you can read how two ACPA facilitators’ pain treatments were affected by their race or ethnicity, and how they fought back to gain control over their lives.
Instead, they suggest that we pay attention to the factors that cause disparities.
1 The Chronicle, ACPA, Summer 2008.
Many Factors Influence Access to Pain Treatment
2 Finding Good Pain Treatment is Hard, Even if You’re White, New York Times, August 19, 2016. 3 Racial-Ethnic Disparities in Opioid Prescriptions at Emergency
Where a person lives, their employment, health insurance
Department Visits for Conditions Commonly Associated with
coverage, and income level can affect how easily they
Prescription Drug Abuse, by Astha Singhal, Yu-Yu Tien, and
can get access to pain medication, therapies, and health
Renee Y. Hsia; PLOS ONE Journal, August 8, 2016,
professionals.
Factors that Cause Disparities
✽ The way people with pain communicate their specific needs, track their pain levels, question their doctors, and assert their rights ✽ An individual’s image, attitudes, and cultural beliefs ✽ The way a doctor may empathize less with people of a different race (only about 4 percent of the physicians in the United States are African-American) ✽ False stereotypes regarding those who abuse drugs
CHRONICLE | APRIL 2017
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Necie Edwards No one envisions a life with chronic pain — having to find doctors who believe in what ails you, trying to figure out which medicine will help, or finding your own alternative protocols. Life with chronic pain is indeed challenging, but it can also “lead you to your purpose,” as Necie Edwards from Vernon Hills, Illinois, has found.
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Her Pain Story
A Window of Hope
In May 2013, Edwards, 51, began experiencing excruciating
Finally, after more than two years, she found a doctor
pain in her abdomen, which testing determined was
who listened to her and recognized her pain as being
caused by uterine fibroids, cysts, and endometriosis.
related to fibromyalgia. She shared that previous
Not long after having a total hysterectomy, however,
doctors had told her that women of color couldn’t get
she began experiencing widespread pain throughout
fibromyalgia and that “women of color process pain
her body. Waking up each morning, she felt as if she’d
differently.”
been hit by a truck. That pain persisted all day, every day — and not even the seven or eight doctors she saw to help unravel the mystery could offer any insight. She needed to ask for time off of work, but her primary care doctor told her that he “didn’t have time” to complete the required paperwork for her employer. He said, instead, that there was nothing wrong with her. So she went back to work, putting in long, multiple shifts at a reimbursement call center. Edwards said she explained to her manager that her long work hours were impacting her health, and that she would like help finding a less-demanding position within the company. The manager refused. Three weeks later, she was rushed from work to the hospital with chest pains. The emergency room doctor shared that he had seen far too many individuals from that same company end up in the hospital. He told her not to return to work. Because her chronic pain was so debilitating, she elected to take short-term disability. Edwards suspected that her pain might be caused by fibromyalgia, but the rheumatologists she visited only wanted to treat her for rheumatoid arthritis. They told her she needed to go back to work, but it was all she could do to crawl out of bed in the morning.
Her new doctor was stunned and immediately told her that fibromyalgia has nothing to do with the skin color, or her ethnicity, something Edwards knew all along. “This doctor, finally, validated me — that I was indeed a human being and that someone cared enough for me to relate to what I was saying,” Edwards said. “This was life-affirming and injected positivity where there had previously been none.”
Finding What Works Feeling like she had regained some control over her life, Edwards began educating herself about chronic pain. She began walking and trying meditation as a way to manage her pain. Then in January 2015, the car she was driving was rearended at a red light. She experienced excruciating and debilitating neck pain as a result. She tried physical therapy, but it didn’t take long to realize that it would not be successful. “There are two different types of physical therapists — those who are trained in pain science, and those who are not, and I had the ones who weren’t,” she said. “Every single exercise they showed me increased my flares, which I explained to them. I was told, ‘We’ve never seen anyone like you and we don’t know why this isn’t working for you.’” She said she watched them
“I felt abandoned as a patient,” Edwards said, “and was
treat others with compassion and support, yet she was
thrown into this category of ‘no one cares.’”
treated far differently. continued on next page
CHRONICLE | APRIL 2017
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continued from previous page
She then attended a chronic pain boot camp in Oak Brook,
She began juicing, using essential oils and supplements,
Illinois. This five-week program included pain education,
and now follows exercise and nutritional programs that
psychotherapy, and an exercise program tailored for her
work for her. She also incorporates positive self-talk and
unique needs. It also included alternative modalities, such
relies heavily on her faith.
as energy healing and low-impact yoga. Several months
Finding Strength in Helping Others
later, Edwards began seeing the doctor of functional medicine who established the boot camp, and enrolled in a second session. But between the two-hour commute to the camp and her high pain levels, she was often exhausted. The camp staff claimed she was making excuses. After three weeks, blood tests revealed that Edwards had Type 2 diabetes and was suffering from chronic fatigue syndrome. At a staff meeting, which Edwards attended, the staff members said they had never seen a patient with so many issues and they didn’t feel like Edwards was “on their team.” Feeling disillusioned, but not defeated, Edwards opted to develop her own protocols — ones she could adjust to her needs. She began meditating and incorporated components from the amygdala retraining program, which emphasizes ways to teach various areas of your brain how not to overreact to pain.
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Edwards knew that helping others when we are in times of need can help boost our abilities to power through our own struggles. After a long talk with God, she knew what she had to do. In 2014, she founded the Fibromyalgia Patient Education and Support Organization to provide educational programs and services designed to improve the quality of life for patients diagnosed with fibromyalgia — offering help and hope to the millions of individuals who suffer from this debilitating condition.2
Helping others can help boost our ability to power through our own struggles
She now hosts her own public access TV show,
coordinator, she can inspire others to take control, and
“Fibromyalgia Talks.” It features conversations with
find their own calling.
healthcare providers, holistic/complementary medicine practitioners, clergy members, public service officials, and people with fibromyalgia. She also hosts “The Fibro Health Detective Show” podcast (available on iTunes), which offers clues about what causes fibromyalgia and how to overcome its effects on daily life. And since 2015, she has been an ACPA support group
“I never expected to get fibromyalgia, but having it has made me learn a lot about myself,” Edwards said. “Pain truly does lead you to your purpose. For so many years, I was bullied at work with the long hours, and experienced such debilitating pain. But I found a way to get through it. I always like to say ‘you never know how strong a woman is until you put her in hot water.’
facilitator near her home in Vernon Hills. Edwards said the ACPA appealed to her because of how involved facilitators were in the community — a community she had so desperately needed when she started her own pain journey. Edwards’ group includes men and women of various ages and ethnicities who participate in in-person meetings and online forums.
Ethnicity Affects Approach to Healthcare Edwards said she uses her experiences to help guide their discussions. She has found that other women of color, as well as those of other ethnicities, have had similar encounters with their healthcare providers. And she has also found that different ethnicities approach pain management differently. “Some folks in my group will go to the doctor, and they will take the doctor at his/her word,” Edwards said. “I say, ‘did you ask any questions or take a loved one to help fill in the gaps?’ And what I hear is ‘No, I don’t question the
“Over the years, I’ve really tapped into things that I would
doctor.’
have never pictured myself doing — such as painting,
“I encourage them to take an active role in their healthcare, and will even help them formulate questions to ask to help keep their doctors accountable, or even help them get a second opinion,” she said.
journaling, and speaking. And I think I’ve only just touched the surface of what I’d like to do. When you have chronic pain, you need help. And because of my chronic pain journey, I found my voice, my passion, and my sea legs to come into my own.”
Edwards said that some people are convinced that nothing will help their pain. It is those people, Edwards said, “who are married to their disease, and will just not accept that they can indeed have some level of control.” Edwards said she hopes that as a facilitator, workshop
1 http://www.guptaprogramme.com/chronic-pain-syndrometreatment/ 2 https://www.fibromyalgiapatienteducation.info/about1/meetfounder/
leader, keynote speaker, and health conference event
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9
Sergio Padilla The Gifts and Challenges
Working for the San Diego Sheriff’s Department, Sergio Padilla of Lemon Grove, California, encountered challenges when he worked at an inmate detention facility. But that environment pales in comparison to a life with chronic pain — something Padilla has experienced since 2001. But that pain comes with gifts — the gift of learning to live in the moment, and learning to accept where you are so that you can create new and unexpected journeys.
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His Pain Story
and that includes healthcare providers — because
For most of his life, Padilla, 58, has experienced chronic
healthcare providers “will always take care of you,”
pain, specifically, a persistently “tired” right leg and
Padilla said.
back. He worked for the sheriff’s department up until
Although Padilla said he has not experienced any
2010, when he underwent four-level spinal fusion
widespread discrimination, he did experience
surgery. When he woke up post-surgery, he found his
challenges with his assigned occupational nurses,
right leg swollen and still painful — “like a knife ripping
who asked if they could accompany him during his
through it,” Padilla said. In addition, he felt weak from
doctor’s visits. Padilla asked the doctor’s staff if this
his right hip down to his ankle. When he returned to
was advisable and was told he had the right to
work after months of physical therapy, the pain in his
decline the nurse. He did so, explaining that he
right leg, especially below the knee, persisted. Padilla
wanted to visit with his own doctor privately. That
said he was depressed, experienced confusion, and
news, he said, surprised the nurse.
would often drop to the floor screaming and crying, which he described as “hitting a pain wall” that was nearly unbearable. Padilla said he returned to the doctor to explain the symptoms, which included pain on his left side. Doctors conducted an X-ray and MRI, and told Padilla every-
Members of the Hispanic community are ingrained with a certain machismo; if you have pain, you must learn not to complain
thing looked good. However, Padilla suspected he had a pinched nerve, which doctors later confirmed. They
On another visit, Padilla allowed the nurse to join him
also discovered that he had a herniated disc, which
and ultimately decided that it would not happen again.
was likely a negative outcome of his spinal surgery.
A short time into the visit, the nurse took command,
He went back to work again, but soon decided to file
interrupting his discussion with the doctor. Padilla
for workman’s compensation. Although his colleagues
asked the nurse to hold off on all questions until after
never said anything specifically, Padilla felt judged,
the visit was over, an approach the doctor agreed
as though he was “working” the system by filing for
with. Padilla believes the nurse meant well, but her
compensation. It was clear to his attorney that Padilla
interference represented the insurance company’s
was in severe pain, truly unable to work. He applied for
best interest, not that of his health.
— and received — state workers compensation, and
“What I learned from this experience, and what I share
eventually, permanent disability.
with my ACPA group, is that you have to be your own
Learning to Question Authority
advocate,” Padilla said. “I tell the doctor or nurse that
Padilla said that he and other members of the Hispanic community are ingrained with a certain machismo — if you have pain, you learn not to complain, and instead withstand it. He said many in the Hispanic community
XYZ isn’t working for me. Be a polite pain in the butt. All of these things — these challenges — are largely absent with members of our community.” continued on next page
also grow up learning not to question authority — CHRONICLE | APRIL 2017
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continued from previous page
Padilla said he has also had disappointing experiences
Charting the Next Chapter
with doctors — in particular, a physician assistant (PA).
In 2001, experiencing chronic pain once again, Padilla be-
This PA walked into his appointment, file under his
came depressed. Spending the majority of the time on the
arm and asked Padilla which leg was in pain. Padilla,
floor, staring at the ceiling, Padilla was overwhelmed with
dumbfounded, asked the PA: “How long have I been
anxieties, wondering what to do next. One day he asked a
coming here? How long has Doctor X been treating me?
visiting neighbor to put his computer on the floor next to
Yet, you have to ask me in which leg I feel pain?” Padilla
him. Padilla, seeking a distraction, began writing the next
suggested that the PA read his file first before meeting
chapter in his life — one that would directly benefit low-
with him, which he did on subsequent visits.
income families and seniors in his immediate community.
Although San Diego is diverse, nearly a third of San
He created Harvest CROPS, a non-profit organization that
Diego’s population is Hispanic. Padilla said that he often
brings together community volunteers to pick residential
hears of non-English speaking parents who rely on their
fruit. All the fruit is donated to food shelters. Up until
kids to interpret what the doctor is saying. As a former
2006, another non-profit — Generations of Actions —
interpreter, Padilla said he has encouraged parents to
implemented and ran Harvest CROPS, with much success.
insist on a professional interpreter, not their children.
But when Generations of Actions dissolved, Harvest
Children innocently put their own spin on what is commu-
CROPS was shelved.
nicated, expressing their own opinions. Additionally, the children learn about personal medical issues that can
In 2009, Padilla connected with his son’s youth director.
sometimes affect them emotionally.
Together, the two collaborated to reinvigorate Harvest CROPS. Padilla sought out volunteers, while the youth group leader engaged his youth group. That first year, the group picked nearly 5,000 pounds, and the following year, doubled that amount. Padilla, who serves as Field
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Padilla created Harvest CROPS, a non-profit organization that brings together community volunteers to pick residential fruit. All the fruit is donated to food shelters.
Harvester Coordinator, said that since its inception,
Padilla has had to remind doctors to look him in the eye
Harvest CROPS has delivered over 215,000 pounds of
when they are talking to him — not at the computer.
residential fruit. Padilla said everyone wins, including
He will sometimes physically place his palm on the file
himself, as he is distracted from his pain by helping others.
where the doctor is reading to gain his/her attention. In
Padilla’s therapist highly encourages his participation, and Harvest CROPS continues to be his passion and vision. Padilla said he spends about 60 percent of his time in
essence, you do what you need to do to advocate for yourself, he said, reminding his group that doctors “work for us; we do not work for them.”
bed, laptop on his stomach, developing Harvest CROPS
Finding the Good
initiatives. He also encourages others within his ACPA
Padilla, a self-professed Type A personality, paces a lot,
group to find and grow their passions, just as he has with
pondering his next move. He wants to be productive,
this organization.
and often finds himself depressed when the physical
Helping Others Help Themselves
pain overtakes his plans. He has taken mindfulness and
Since 2015, Padilla has facilitated the Lemon Grove ACPA support group, which averages about 10 people. He has shared his story with the group, which includes individuals with long-term chronic pain, and those who are in the early stages. He shares his learnings:
1 2 3
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Accept the pain.
pain management classes, as well as physical therapy. Although they have helped him develop coping skills, there are days when even taking a shower is an overwhelming effort. But, he said, it’s never been his style to crawl into a fetal position and hide in the corner. Instead, he chooses to live, because the victim mentality is not appealing. “I have found that there are no guarantees in life,” Padilla said. “I tell my kids that life is what you make of it, and you can’t worry or control the past or the future. Live the moment — and live it now.”
Look for resources. Don’t be afraid to question, even if that means yelling to get a doctor’s attention.
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When a Touch Causes Pain: Living with Postherpetic Neuralgia by Alison Conte
Researchers Study Topical Treatments and Electrical Stimulation The characteristics of postherpetic neuralgia (PHN) nerve pain are different from most other chronic pain that results from injuries or diseases affecting muscles or the spine. PHN is a complication from herpes zoster, also called shingles. Shingles is caused by the same virus that causes chicken pox (varicella zoster). After you get chicken pox, the varicella zoster virus stays in the nerves near the spine, dormant, until the immune system is weakened.
An Expert on Nerve Pain Srinivasa Raja, M.B.B.S., M.D. is one of the leading researchers into PHN. He also treats people who have back pain, nerve pain, phantom limb pain, cancer pain, and peripheral neuropathies such as diabetic neuropathy, and complex regional pain syndrome (CRPS).
Burning, Itching, and Sensitivity to Touch People with nerve pain describe it as a sharp, burning, itching, stabbing, piercing, ongoing, or intermittent pain. “But one of the most difficult aspects is called allodynia,” said Dr. Srinivasa Raja, of Johns Hopkins University. “This is pain produced by a touch, a brush on the skin with clothing, wind, or even a musical vibration. One person could not attend a concert, because it caused pain. Another could not wear a bra against her skin.” He said that shingles can also cause trigeminal nerve pain of the face, which can make it painful to even comb one’s hair. “The thing that is difficult to understand about PHN is why a nerve that has been destroyed by the herpes zoster virus should continue to cause pain. What happens is that the virus changes the pain pathways, making the person hypersensitive to pain. It causes an increase in activity in the parts of the brain that processes the pain signals,” he said.
Dr. Raja is Director of Pain Research, Department of Anesthesiology and Critical Care Medicine and Professor of Anesthesiology and Critical Care Medicine and Neurology at Johns Hopkins University.
Then the virus can grow in the nerves, causing pain and later, a rash. PHN is the pain that remains three months after the herpes zoster lesions or rash are healed. The risk of getting PHN is highest for those who have a high degree of pain, or larger lesions during the acute phase of a herpes zoster attack. The degree of PHN pain can be lessened if you seek medical treatment with antiviral agents immediately after seeing the zoster rash, or feeling pain, on one side of your chest or face.
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Trying Combinations of Therapies “The earlier the treatment the better,” said Dr. Raja. “The new thinking is that herpes zoster and PHN are a continuum of the same condition. However, if the pain continues to persist even after the rash and lesions are well healed, usually within 4 to 8 weeks, PHN pain develops as the second phase.” Some people get relief from anticonvulsants or tricyclic antidepressants such as serotonin–norepinephrine reuptake inhibitors (SNRIs). These work because damaged nerve cells send pain messages to the brain, even when there is no injury. Anticonvulsant medications block the sodium channels along nerve membranes that cause nerve cells to
activate, helping to quiet down these overactive nerves. Antidepressant drugs can be used as analgesics, independently of their antidepressant actions. “We find that a combination of therapies may be more helpful. Because the patient can take less of each, they experience fewer side effects, like sedation and dizziness,” Dr. Raja said. Opioids were often recommended during the acute phase of shingles. “However, with the more recent guidelines we are trying to avoid opioids, so we are doing research into drugs that target the peripheral nervous system. Topical lidocaine patches and topical high-dose capsaicin stay out of the brain, avoiding those disorienting side effects,” he said. “Studies are also being done in neuromodulation therapies, which include electrical or magnetic stimulation of peripheral nerves, spinal cord, and even specific parts of the brain (e.g., TENS [Transcutaneous Electrical Nerve Stimulation], spinal cord stimulation, or transcranial magnetic stimulation),” he added.
PHN Leads to Depression Cognitive behavioral therapy for PHN can also help, as 50 percent of those with chronic pain are depressed and need to find a way to live with the changes that pain has brought to their life. “Pain also has a closed link to sleep,” he said. “Pain disrupts sleep and lack of sleep increases pain and disrupts daily life.” “It is important that people with PHN communicate their pain level to their doctor, and also say how their pain affects the aspects of their life,” said Dr. Raja. “Quality of life is essential and physicians don’t have much time in an appointment to get the full picture.”
A Vaccine for Prevention Most people only need one shingles vaccine in their lifetime to prevent PHN. Large-scale studies with the shingles vaccine Zostavax have been shown it to be safe, and the vaccine is approved by the federal Advisory Committee on Immunization Practices (ACIP), explained Dr. Raja. “The CDC and ACIP suggests it for people 60 years or older, and earlier for those with lower immune systems,” he said.
Some Facts ✽ One out of three people in the United States (1 million) will develop shingles during their lifetime. ✽ About one out of five people with shingles (200,000) will get PHN. ✽ The risk of getting shingles increases after age 50. Ninety-six shinglesrelated deaths occur each year, almost always among elderly people or those with a weakened immune system.
Learn more about PHN at www.healingchronicpain.org/neuralgia and at the ACPA website. Dr. Raja plays an active role in the international pain community. He was the chair of the Scientific Program Committee for the World Congress on Pain in 2014 and was the past Secretary of the International Association for the Study of Pain (IASP). He also served as the chair of the Neuropathic Pain Special Interest Group in IASP. Dr. Raja has won numerous awards for his work, including the
The ACPA has communications tools that make these kinds of discussions easier and more effective.
Wilbert E. Fordyce Clinical Investigator Award from the American Pain Society (2008) and the prestigious John J. Bonica Award from the American Society of Regional Anesthesia and Pain Medicine (2010).
CHRONICLE | APRIL 2017
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Sharing ACPA Resources through Social Media Networks Social media networks such as Facebook are great for sharing photos of cats and babies, and even for protesting against government policies, but they can also help people with chronic pain. The ACPA is increasing our efforts to be part of the online community of people talking about pain. Through social media we can:
✽ Tell more people about the tools of the ACPA ✽ Promote support groups, events, and conferences ✽ Help people with pain talk to each other, so they know they are not alone Online social support is a vital way to connect with others, especially for people with pain who don’t often leave their homes.
Facilitators Volunteer to Tweet Five members of the ACPA Members Advisory Committee (MAC) are helping us create a strong presence on social media. Though they aren’t savvy millennials, Tom Norris, Catherine Cartwright, Ernie Merritt, Mariann Farrell, and Max Sokolnicki are posting on Twitter daily to tell the world about ACPA.
Tom and Marianne Norris
“Twitter happens so fast,” said Tom Norris, facilitator of the North Hollywood and Northridge Hospital ACPA support groups. “We want to be part of the ongoing conversation. I’m amazed at how many people are talking about pain.”
Recently, the MAC team tweeted about:
✽ ACPA support group activities ✽ Tools and workbooks ✽ Warnings about acetaminophen use ✽ Suggestions for exercise or relaxation
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“We also follow Penney when she is doing presentations, and let people know,” Norris said, referring to Penney Cowan, executive director and founder of the ACPA. “And we retweet what others say about pain, and about Penney.” In February 2017, the ACPA had 536 tweets (posted notes) and 645 followers. Our followers see the ACPA tweets on their own, ever-updating Twitter feed.
Hashtags Create #Categories Tweets include hashtags, such as #brainfog, #ChronicPain or #fibromyalgia. These are the subjects of each tweet. Tweets from thousands of people are gathered under the hashtag, so people can search for the topics they are interested in. At #ChronicPain, recent tweets included:
✽ Government legislation to support pain research ✽ Swedish patients taking cannabis for chronic pain ✽ Playlists of songs to listen to as distractions ✽ Virtual reality goggles as a temporary respite from pain ✽ Stories from people who live with pain
Doing More with Social Media
Jonathan Cohen
Jonathan Cohen, of the ACPA board of directors, is helping to direct these social media efforts. “We want to integrate ACPA activities and resources into social media to get them to a wider audience. That happens when people share online with others,” Cohen said.
He admitted that social media may not feel as natural to some older ACPA members as it does younger people. But many people of all ages rely totally on social media for their news, information, and interactions. “It can never replace what an in-person support group meeting can do for a person with pain, but it is an alternative way to connect. Plus, we are reaching people who are searching and find us before we find them,” he said.
ACPA Social Media Sites Growing Pains an online group for teens
Facebook exchanging news with followers
YouTube videos about everything
Twitter very short messages on topics
Pinterest sharing interests with pictures
“What’s great about social media, is that it can quickly multiply and add momentum. Other users start retweeting our messages and then one post turns into 100 without any effort,” Cohen explained.
Connect with Important People
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“This will get more eyes on the conference and on what our speakers say. People who get their health news from UPMC will know about the amazing resources the ACPA has,” he said.
tanuha2001 / Shutterstock.com
It helps when influential people — with lots of followers — retweet your messages. For instance, Cohen asked the University of Pittsburgh Medical Center (UPMC) to tweet about the ACPA’s national pain conference on May 20, 2017, in Pittsburgh.
Cohen and Norris invite all ACPA members to join in. Don’t be discouraged if social media feels strange at first. Just give it a try through Twitter, Facebook, or other platforms. “Social media makes it fast and easy to share something that is important to you. ACPA is getting started, but we need more users to build momentum. So get involved and push it forward,” Cohen said.
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ACPA Update
Help Medical Science through Clinical Trials People with pain can play an important role in developing new medications by taking part in clinical trials. Find a listing of IRB-approved clinical trials on the ACPA website. Currently, there is an opportunity to evaluate an investigational medication for people with long-lasting or persistent pain following shingles, also known as postherpetic neuralgia (PHN). New trials are being posted often, so check back frequently.
Pain Cream Fraud Alert Be on the lookout for suspicious telemarketers who ask for member identification information to ship free pain cream relief medication. These calls are not authorized or affiliated with the ACPA or any Blue Cross Blue Shield company. Do not give out any personal information in response to these calls. The ACPA does not endorse or promote any specific medication, intervention, or treatment for pain management. If contacted, you can always call the ACPA at 800-533-3231 to confirm the validity of the call. If the call is fraudulent, please: ✽ File a complaint with the Federal Trade Commission at www.ftccomplaintassistant.gov or call 202-326-2222. ✽ If you are outside the United States, file a complaint at econsumer.gov. ✽ Report scams to your state Attorney General
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Support Groups Share Pain News Across Cultures ACPA Founder to Chair Board of IAPO Penney Cowan, founder and executive director of the American Chronic Pain Association, has been elected as chairelect of the Board of Directors of the International Alliance of Patient Organizations (IAPO). Cowan has served on the IAPO board since 2015. The IAPO has 276 member organizations from 71 countries, representing 50 diseases. It works to promote patient-centered healthcare around the world. Cowan served as Consumer Representative for the FDA/CDER Anesthetic and Analgesic Drug Products Advisory Committee in 2012 and was appointed to Interagency Pain Research Coordinating Committee of the National Institute of Health from 2013 to 2015. She also serves on the board of the International Pain Management Network. You can learn more at www.iapo.org.uk
The need for education about chronic pain spans all languages and ethnic groups. That is why ACPA support groups attend community events to spread our mission and message.
Reaching out to Hispanic People The ACPA support group of Lemon Grove, California, was invited to attend and represent ACPA at a local “Faces of Fibromyalgia,” awareness forum targeting the Hispanic community. Sergio D. Padilla, facilitator, gave a 15-minute presentation about ACPA’s presence in San Diego County. We were a big hit with our pin-up buttons saying “Un Manejo Efective del Dolor”– which translates as, “An Effective Management Of Pain.” “I am grateful to Susan, our volunteer, who was very patient and understanding, despite not knowing Spanish. Chronic pain needs no translation,” said Padilla. “We met many potential new members, offering the possibility of a new Spanish ACPA group in San Diego. We shared the banner, literature, and materials, all supplied by Joni Armstrong at the ACPA office.”
Connecting with Jewish Communities Jim Weil, facilitator for Redwood City, California, support group, staffed the ACPA table at the Sima Spector Health Conference in Rancho Cordova, California on Sept. 29, 2016. This conference was presented by Hadassah and the National Council of Jewish Women. Speakers and representatives from 15 different organizations shared information about health and complementary therapies with about 100 attendees.
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Howard and Norma: Married to Each Other and Fibromyalgia by Howard Hagler and Alison Conte
Howard Hagler is angry. His wife, Norma, who was always called Norm, had chronic pain. He would do anything to help her, including relocate their home anywhere in the country to find the best climate and environment to minimize her pain. Howard, 89, is a former Air Force officer and businessman. For most of his 62 years of marriage, he watched his wife deal with the pain of fibromyalgia.
Seeking Government Support Howard settled on Congress, particularly female representatives in Washington, D.C., because this is primarily a women’s problem.
He didn’t mind the state-hopping. After all, she had certainly moved
“They ought to be standing up for this. They talk about breast
many times for him as his career changed. But he felt so frustrated
cancer, AIDS in Africa, and jump on a bunch of bandwagons that
that she couldn’t get more help, and further frustrated as he tried to
don’t affect women’s issues,” he said.
find an outlet for his anger.
“And there are six to eight million women with fibromyalgia.
“For a while,” he said, “I was angry at the doctors.” But then, he
You multiply that by their family members, and that’s a sizable
realized that they “do the best they can with the training, experience,
constituency,” he said.
and knowledge they have.” So he directed his fury at the drug companies. But, he realized,
“You need to vent and get mad at someone to relieve the frustration, and I settled on Congress,” he said. “Having testified before Congress
“they’ve got economical realities to deal with and, as a businessman,
on energy issues in the past, I’m reasonably familiar with how Wash-
I understand that.”
ington works. There has to be a lobbying entity that they’ll listen to. You can write a letter, but you’ll get lost in the shuffle,” he said.
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“
I’m thinking about my daughter and granddaughters. It’s not life threatening, but it’s certainly a quality of life issue that affects millions of women.
An organization such as the ACPA has a better chance of being
But the high humidity and barometric pressure changes of the East
heard. The problem has to be approached on a broad front,
Coast played havoc with Norm’s pain. So they packed up in 1994 and
according to Howard, or through a congresswoman who is open
moved to the drier climate of Temecula, California, near San Diego.
to the idea and understands the critical health issue it represents.
Two of their children lived on the West Coast.
In the Beginning
Norm was in a severe car accident in 1995 that almost killed her. She
The Haglers’ pain journey began in 1964 when they were living
recovered with a lot of medical care, therapy, and personal effort.
in a Baltimore suburb. They had already moved three times to
While the warm weather was good for her pain, California bestowed
follow Howard’s career. Norm, who was raised on a farm in Ohio,
new allergic symptoms on Norm, adding to her stress.
was very active. She raised their four children, played golf, tennis,
and racquetball.
Then she began experiencing unusual muscle soreness.
A rheumatologist diagnosed “fibrositis,” one of the first terms used to describe fibromyalgia. In 1977, they moved to Fairfax County, Virginia, near Washington,
In 2001, they moved to an assisted-living community in Charlotte, North Carolina. “It has very moderate weather, very little snow. And, two of our nine grandkids are close by,” said Howard. In 2003, Norm had open heart surgery to repair some heart problems. In her 80s she developed Alzheimer’s, experienced a bad fall, and continued to live with disabling, chronic pain, taking
D.C. Norm could still play golf, and they managed to get their
opioid medications during her last 18 months of life, until her body
three oldest children, all boys, off to college. Still, her fibromyalgia
stopped functioning.
symptoms worsened. She visited an array of doctors, tried an
Love and Caring Continues
array of ineffective treatments, and heard many misdiagnoses, including the “it’s-all-in-your-head” one. In 1987, after their youngest child, a daughter, left for college, Howard went into semi-retirement. He and Norm moved to an island near Savannah, Georgia. Norm still played competitive
Norm passed away in August 2016, at the age of 87, but Howard remains concerned about the lack of research and national attention given to fibromyalgia. It tends to run in families and he is concerned their daughter is showing some signs of having the disease.
golf, enjoyed an amateur art career, and continued to try more
“I wish there was something that might help,” Howard said. “I’m think-
treatments. These included anti-depressants, trigger point
ing about my daughter and granddaughters. It’s not life threatening,
injections of analgesics, and electrical stimulation.
but it’s certainly a quality of life issue that affects millions of women.”
“Her fibromyalgia was a little bit better recognized, but nobody had any real answers for us,” said Howard.
ACPA Recommends a Pain Clinic Finally, Howard and Norm found the ACPA and began talking with executive director Penney Cowan. “She recommended Norm spend some time in a hospital pain clinic, which was the most valuable suggestion anyone ever made,” recalled Howard. Norm spent six weeks at Walden Rehabilitation Hospital Center for Pain Management in Augusta, Georgia, coming home only on weekends. “She learned so much about pain management — the best types of exercise, biofeedback, meditation, and more,” said Howard. “After so many attempts — including chiropractic and alternative and holistic medicine — the pain clinic therapies were the most worthwhile.”
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New Gr ups TM
Welcome
Carole Andre
Lester Zaleski
to our new groups and facilitators.
Boulder Creek, CA
Newton, NJ
Chuck Taylor
Hank Holmes
Jacksonville, FL
Narberth, PA (Phone Support Only)
Angel Mason Chicago, IL
Christy Tigner Ottawa, KS
Kim J. Altland York, PA
Janelle Leigh Story Franklin, VA
For contact information for any support group facilitator, please call 800-533-3231.
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Tributes In Honor of my grandmother Rita Delisle and her ongoing struggle against nerve pain Given by Frankie Delisle
In Honor of Tim Hailey
In Memory of Emily Dawson Given by Susan H. Fisher
In Memory of Linda Gene Hook "Granny" Given by Concho Valley Quilters Guild
Given by Karen Rosener
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Thank You! CH AM PIO N
AMBA S SA DO R
E DUCATO R
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
BUILDE R
SU PPO RTE R
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.
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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 | APRIL 2017
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