Journey of Hope: Spring 2015

journey of HOPE volume I, issue 1

SPRING 2015

MESSAGE from the PRESIDENT

Phil Mandel, Sherry McGoldrick (formerly of PAIN LINX), Cheyenne Luzader of Beebe Healthcare and Bettina Riveros, Chairman of the Delaware Health Commission.

Pain Warrior Spotlight:

Phil Mandel Overcoming Pain Since 1985

It started with severe nerve pain down his left arm. Within two decades, Phil Mandel would undergo two laminectomies with a fusion on his cervical spine, two lumbar spine procedures to relieve pressure on the sciatic nerve and two knee replacements.

Phil retired after 38 years of service to the federal government. He held positions in what was then the Office of Education, the National Institute of Neurological Diseases and Stroke, the National Institutes of Health, the Office of the Assistant Secretary of Health, the Department of Defense and the Department of Energy. He has accomplished much while living with chronic pain from spinal stenosis and arthritis. Phil is the founder of PAIN LINX, an education and support group for people with chronic pain. He joined the U.S. Pain Foundation Ambassador family in 2014, facilitating Delaware’s proclamation declaring September Pain Awareness Month. Phil is active in state and local politics, the local camera club and the Senior Center Pool League and coaches boys’ basketball.

“I could not have endured my trials and tribulations without the care of my wonderful and beautiful wife, Marianne,” Phil admits. “During our almost 18 years together, she has been my caregiver extraordinaire.” Deciding to forgo the most recent recommended surgery as well as pain medications, Phil found some relief combining aqua therapy with physical therapy and at-home workouts.

Says Shaina Smith, director of Ambassadors: “Phil’s perseverance and willingness to assist the pain community are unmatched. We are confident that his pain journey will educate and inspire others to make chronic pain visible and better understood.” a newsletter from U.S. pain foundation

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To all of our amazing Pain Warriors, When I founded U.S. Pain Foundation, I wanted to create an organization focused on the patient perspective. As a person with pain, I envisioned patients helping patients and programs leading to action and empowerment. Over the past six years, U.S. Pain has grown larger than I could have imagined. What started as a small grassroots group has become a nationally recognized patient advocacy organization ensuring that people with pain are heard, validated and empowered. U.S. Pain is a lifeline for many with pain—a resource that offers support and hope, community and strength.

I am thrilled to introduce our new publication, Journey of Hope—another tool to help guide you on your pain journey, with an emphasis on connecting, informing, empowering and advocating.

Each issue will focus on a different pain condition, starting with fibromyalgia, a complex chronic disorder characterized by widespread debilitating pain, psychological distress and a heightened pain response.

May 12 is Fibromyalgia Awareness Day. Visit www.uspainfoundation.org to find ways to become involved.

All of us living with pain are warriors. Each day we choose to live rather than succumb.

We find ways to persevere despite pain, and we continue to have fulfilling lives—lives with hope. I am inspired by your strength, tenacity and resilience. You show me what it means to be a Pain Warrior, and I hope you know that U.S. Pain is here to make the journey with you.

Wishing you a low-pain and high-spirits day, Paul Gileno Founder & President, U.S. Pain Foundation www.journeyofhope.com

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Pain Policy and Advocacy:

How you can speak out and be heard What is the National Pain Strategy (NPS)?

The NPS is the first comprehensive, population health-level strategy to address pain as a complex, chronic disease, and it includes pain research, education, care and prevention. In 2013 and 2014 the Secretary of Health and Human Services directed the National Institutes of Health to lead the effort to create this strategy.

Nearly 100 experts from six federal health agencies—as well as those representing the medical, scientific, insurance, patient and advocacy communities—participated in its development. The resulting document outlines short- and long-term objectives, key stakeholders and metrics for assessing progress in six areas: population research; prevention and care; disparities; service delivery and reimbursement; professional education and training; public education and communication. The public release of the NPS is expected shortly.

Why do we need a National Pain Strategy?

In June, 2011, the Institute of Medicine’s (IOM) blue ribbon Committee on Advancing Pain Research, Care and Education issued what was unquestionably the most comprehensive report on pain in America ever produced. Its findings and recommendations were dramatic and unequivocal. The IOM concluded that pain is a public health crisis of epidemic proportions that places an enormous financial burden on the nation and exacts a huge personal toll on pain patients and their families.

Among the IOM findings: ■■ 100 million adults suffer from chronic pain—one-third of the U.S. population, more than are afflicted by heart disease, diabetes and cancer combined.

■■ The prevalence of chronic pain will only increase as the population ages and as the effects of obesity manifest themselves in pain-related conditions like diabetes and musculoskeletal disorders.

■■ Chronic pain costs the nation $560– $635 billion annually in direct healthcare costs and lost productivity.

■■ Human suffering is often unnecessary—millions of people get inadequate pain relief for conditions that could be treated or managed.

How can you support the National Pain Strategy?

The Department of Health and Human Services is expected to release the NPS report shortly for public comment.

This will be your opportunity to weigh in, submit your comments and urge our government to hasten its implementation.

U.S. Pain Foundation will let you know when the report is officially released and what you need to do to be sure your voice is heard. Our collective action will be needed to make this plan a reality so we can improve pain care for all Americans. We cannot wait any longer!

The IOM recommended the creation of a comprehensive national strategy to address this public health crisis—the impetus for the National Pain Strategy.

calendar of events

U.S. Pain Foundation is out and about in the community. We invite you to join us, meet us or participate in any way you can.

May 1–3 Abilities Expo, New York, N.Y., metro area www.abilities.com/newyork

July 17–20 Dysautonomia International Conference, Washington, D.C., www.bit.ly/18vF1gz

July 31–Aug 2 Abilities Expo, Houston, Tex. www.abilities.com/houston/

June 12–14 Abilities Expo, Chicago, Ill. www.abilities.com/chicago

July 23–26 Juvenile Arthritis National Conference, Orlando, Fla. www.bit.ly/1F3VUMt

Aug 13–15 Ehlers Danlos National Foundation Conference, Baltimore, Md., www.ednf.org/annual-conference

June 14 RSDSA Patient Conference, Denver, Colo. www.rsds.org/events/

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www.journeyofhope.com

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managing your Pain: Fibromyalgia Fibromyalgia is a complex chronic pain condition characterized by widespread debilitating pain in the neck, shoulders, back, hips, arms and legs, and tender points, along with psychological distress and a heightened pain response to stimuli that would not normally produce pain (centralized pain state). People with fibromyalgia experience: ■■ Pain. Fibromyalgia pain is intense and chronic, occurring throughout the body. Fibromyalgia can cause stabbing and shooting pain and deep muscular aching, throbbing and twitching. Neurological problems such as numbness, tingling and burning are often present.

■■ Fatigue. Fibromyalgia fatigue is a profound, overwhelming and debilitating state of exhaustion.

■■ Impaired cognition. “Fibro fog”: difficulty reasoning, confusion, impaired concentration and memory.

■■ Sleep problems. Many fibromyalgia sufferers have sleep disorders that affect deep, restorative Stage 4 sleep.

■■ Other symptoms and co-morbidities. Irritable bowel and bladder, migraines, restless legs syndrome, skin sensitivities and rashes, dry eyes and mouth, anxiety, major depression, ringing in the ears, dizziness, vision problems, Raynaud’s syndrome, neurological symptoms and impaired coordination.

Becoming educated about both the physiological and the affective/evaluating (emotional) aspects of fibromyalgia pain is essential to decreasing pain and improving quality of life. Both sensory experiences and thoughts (beliefs, fears, depression, anxiety, anger, helplessness) can either heighten or dampen the perception of pain. In addition, changing one’s lifestyle can bring about significant improvement in function and pain levels.

Continuing mild movement on a bad day and refraining from overdoing on a good day are essential for good symptom management. Also important is partnering with a physician who is both experi-

a newsletter from U.S. pain foundation

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enced in fibromyalgia treatment and empathetic with the fibromyalgia patient.

■■ Pain management. There are several pharmacological treatments for fibromyalgia, including pregabalin (Lyrica®), duloxetine (Cymbalta®) and milnacipran (Savella®). Symptoms of the disorder may also be treated with non-narcotic pain relievers like tramadol or low doses of antidepressants or benzodiazepines. Lidocaine injections into tender points may also work on localized areas.

■■ Sleep management. Healthy sleep habits include sticking to a sleep schedule; creating a quiet, comfortable sleep environment; avoiding caffeine, sugar, alcohol and eating immediately before bed; avoiding napping; doing light exercise during the day; developing a relaxing bedtime routine; and practicing relaxation exercises.

■■ Also important is a regular program of gentle exercise and stretching.

In addition, lower pain levels result when the heart rate is slowed by deep breathing and performing other relaxation techniques.

■■ Psychological support. Acceptance of chronic illness can be difficult. The patient should structure a mental health program that provides emotional support and increases communication with family and friends.

Support groups and forums can be helpful, and cognitive behavioral therapy with a trained professional who understands chronic pain can benefit those with fibromyalgia.

■■ Alternative treatments. These include physical therapy, therapeutic massage, myofascial release therapy, water therapy (in a warm pool with warm surroundings), light aerobics, acupressure, application of heat or cold, acupuncture, yoga, relaxation exercises, breathing techniques, aromatherapy and biofeedback.

■■ Nutrition. Stick to the basics: a healthy, balanced diet.

For more information, check out the National Fibromyalgia Association (NFA)—www.fmaware.org, and the National Fibromyalgia & Chronic Pain Association—www.fmcpaware.org.

www.journeyofhope.com

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Journey of hope u.s. pain foundation 670 newfield st., suite b middletown, ct 06457

PRSRT STD US POSTAGE PAID Middletown, Ct Permit #47

This newsletter made possible by an unrestricted grant from

u.s. pain foundation programs Are you looking for a way to be of service to the pain community? Don’t know where to start? Consider U.S. Pain Foundation’s Pain Ambassador Program.

U.S. Pain Foundation created the Ambassador Program to harness the power of individuals who want to give back to the pain community. There is no better way to become involved, contribute and be a part of the bigger pain management picture. U.S. Pain Ambassadors are individuals who are committed to creating pain awareness and generating change in all areas of the pain community.

U.S. Pain Foundation values and honors Pain Ambassadors. We rely on them to connect on a personal level with others and carry the message of hope and understanding into their communities. We know that Ambassadors will be as successful as the support, tools and resources we give them, so the Ambassador Program is set up to guide you every step of the way.

First, we want to get to know you, so prospective Ambassadors are asked a set of questions designed to frame their perspectives and focus their expectations: ■■ Why do you want to be an advocate for those living with chronic pain?

■■ Finish this sentence: As a U.S. Pain Ambassador, I am interested in volunteering my time to …

■■ If you are living with pain, tell us briefly about your pain journey and what this experience has taught you.

■■ If you are a healthcare provider, how long have you worked in the medical

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field and what are your connections to pain medicine?

■■ If you are a caregiver, tell us how being a caregiver has changed your life.

When you become a U.S. Pain Foundation Ambassador you will receive information about how to raise awareness and advocate, as well as a welcome package with additional start-up materials. To guarantee success, the Pain Ambassador Program: ■■ Provides step-by-step instructions to Ambassadors for setting up pain awareness events and offers personal guidance from our director of Ambassadors.

■■ Offers the U.S. Pain Ambassador blog and forum, available by invitation only to all Ambassadors.

■■ Maintains an Ambassadors’ Facebook page for posting events, activities, opportunities for involvement, stories, announcements, photos and more.

■■ Supplies an Ambassador subscription to PainPathways magazine.

■■ Holds advocacy summits to exchange ideas, get to know fellow Pain Warriors and recognize triumphs and work well done.

■■ Honors Ambassadors by selecting an “Ambassador of the Month” and featuring him or her in the Ambassador newsletter.

Pain Ambassadors empower people to make changes that improve the quality of their lives, and that is what the U.S. Pain Foundation is all about. According to Director of Ambassadors Shaina Smith, “In essence, our Pain Ambassadors make up who we are as an organization. They personify courage, determination and inspiration.”

www.journeyofhope.com

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