Adverse childhood events (ACEs) and fibromyalgia

Research shows that 14 adverse childhood events occurred more frequently in people with fibromyalgia than a control group. This population has heightened sensitivity to pain, more additional symptoms of other diseases, and a greater consumption of analgesics. Adaptive techniques, cognitive behavior therapy, and association with supportive social circles can improve the severity of fibromyalgia symptoms.

Are you an inspiring akoya pearl, a brilliant diamond, or a fine wine? Known for their character, each overcame nature’s adversity. What about ACEs in fibromyalgia?

Pearls are formed as an oyster protects itself from irritating grains of sand. Diamonds are formed under crushing pressure and intense heat. The best grapes come from deep mountain slopes with rocky soil that stresses the roots.

Adverse childhood experiences (ACEs) are fairly common in the United States, with 46 percent of the population witnessing a parent’s divorce, living with someone who has a drug or alcohol problem, sexual abuse, verbal battering, etc., according to a recent report from Child Trends.

ACEs commonly occur for all, but trauma is different for each person. Genetics, biology, and temperament play a part in how people respond to these cirumstances. The degree to which a person overcomes the negative impact of ACEs is affected by how they narrate their life. That story can sound like “nothing good happens to me” or “life has its ups and downs.”

The National Institute of Medicine report “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research” confirmed the relationship between ACEs and chronic pain conditions in adulthood.

In a key European study, 14 specific ACEs were found to occur almost twice as frequently in FM patients than the control group, leading to the finding that critical life events influence FM symptoms exhibited by patients. Traumatized FM patients demonstrate a heightened sensitivity to pain, more additional symptoms of other diseases, and a greater consumption of analgesics. Of interest, the group noted that compared to the control group, parents of FM patients were not able to express affection through physical care three times more frequently, and physical violence between the parents was reported roughly seven times more frequently.

It’s natural to draw on life experience to make sense of the world. But what if those experiences are maladaptive and perpetuate the cycle of chronic pain conditions? Cognitive behavior therapy has shown sustained improvements in pain, coping strategies, and overall physical function for fibromyalgia, and particularly with juvenile fibromyalgia.

In speaking about his ACEs with Oprah Winfrey, Tyler Perry commented that “what you feed will grow in your life, and what you don’t will starve.” Perry credits Winfrey for inspiring him to start writing down all of the things that happened to him as a way to start untying the holds ACEs in his life had on him. A simple journal or more sophisticated online apps work to start writing about ACEs.

People with FM are not alone in their challenges and experiences. Reaching out and finding others who relate, understand, and inspire are critical to living well with fibromyalgia.

Come celebrate victories and find reliable information and local resources at Together Walks on May 12th, Fibromyalgia Awareness Day. Be inspired by others and share your thoughts to inspire others. Together we make a difference!

The Olympic Spirit Lives in Us!

The Olympics is a time of celebration and triumph that we can all enjoy and relate to.  Athletes dedicated to their sport who have overcome challenges and setbacks lift our spirits.  They kept trying and learned from their mistakes.  A big hurrah and thank you to them for sharing their joy!

Feeling triumphant on achieving benchmarks in our own personal journeys feels like winning a competition against the hard stuff, the challenges that seemed insurmountable.  Just as Olympic athletes achieve their sporting goals, our goals can be achieved with strategic planning.  More is required of us to feel strong and well.  Figuring out how to have good (and great) days that stretch into weeks and months pays off.

The  Stanford Self-Management program for chronic disease teaches how to break goals down into doable action items, and then outcomes are reported to a partner.  Each goal is assessed for anticipated obstacles and  solutions are determined.  Anticipating and strategically planning for obstacles significantly improves the likelihood of success.

Criteria in setting S.M.A.R.T. goals guides objectives and outcomes.  S usually means specific; M – measurable; A – attainable; R – relevant; and T – timely.

Combining these two methods of setting health objectives (goals) can be powerful.  Successful little steps build a foundation for understanding what you’re presently capable of and what’s realistic for next goals.

Recognize and celebrate achievements.  For resilience, include resting periods (or plateaus) and success milestones in goal setting and outcome planning.

We’re here to cheer you on and celebrate your successes.  Please consider setting a goal to join a Together Walk and bringing a friend.  See you at the Together Walks!

2018 Together Walks to combat public health crisis of chronic pain

News – FOR IMMEDIATE RELEASE

February 7, 2018

LOGAN, Utah – The National Fibromyalgia & Chronic Pain Association, a global community supporting individuals living with fibromyalgia and other chronic pain diseases, will join for 1K/5K Together Walks in cities across the nation in honor of Fibromyalgia Awareness Day on May 12.

Walks are scheduled in California, Illinois, Pennsylvania, Mississippi, Missouri, virtually, and in satellite cities.  Planned activities include a 1K/5K walk, educational program, health expo, raffle and musical entertainment. Individuals can also raise funds and awareness in their local community by creating a virtual Together Walk team.

“One in three U.S. adults, 50 percent of all veterans and 80 percent of veterans returning from Iraq and Afghanistan suffer with chronic pain,” said Jan Chambers, NFCPA president and founder. “Life-altering, chronic pain is real, and effective pain relief is needed now. We cannot ignore the public health crisis of chronic pain any longer.”

Reports by the U.S. Institute of Medicine and the Department of Defense show that more than 100 million American men, women and children are impacted by chronic pain and that chronic pain costs the nation $635 billion annually in health care costs and lost productivity.

Fibromyalgia – one of many invisible, chronic pain diseases –  affects 10  million Americans according to Pub Med. The illness involves long-term body-wide pain, fatigue, sleep disturbances, memory problems and impaired functionality.

“Untreated pain such as fibromyalgia has a devastating impact on individuals, families, communities and our nation. The opioid crisis reflects the lack of available treatment options,” Chambers said. “Pilot research funding on fibromyalgia symptoms and impact raised by patients and their communities is critical. Join Together Walks where people in pain have a voice.”

Together Walks are open to the public, individuals living with chronic pain, and their friends, family and caregivers. The walks unite communities to advocate for better access to care, to encourage and fund research into integrative treatments and to increase fibromyalgia awareness, education, resources and support.

Through joining or donating to Together Walks, people can:

  • Network and meet new friends in their community;
  • Educate about the debilitating, life-altering, financial and personal impact of FM;
  • End stigmatization of people suffering with chronic pain diseases;
  • Raise pilot research funding for new studies to discover a cure for FM; and
  • Learn about local resources for pain and symptom relief to improve quality of life.

Together Walks will be held the following dates in the following cities:

To donate to, or register for a Together Walk, visit events.fibroandpain.org. For more information, visit togetherwalks.org.

All Together Walk and NFCPA leaders are volunteers. To volunteer or host a Together Walk virtually or in your city, please contact the NFCPA at info@togetherwalks.org.

_______________________________________

About the National Fibromyalgia & Chronic Pain Association (NFCPA)
25 Federal Avenue, Logan, UT  84321; (1) 801-200-3627; (F) 435-753-3556

NFCPA, a not-for-profit organization, supports individuals living with fibromyalgia and other chronic pain illnesses by raising awareness through community outreach, education, advocacy and networking. Visit: http://www.fmcpaware.org/, www.facebook.com/nfmcpa, www.twitter.com/fibroandpain.

CONTACT

Parker Jenks, Together Walks Director
parker.nfmcpa@gmail.com; (1) 801-200-3627

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What is fibromyalgia?

Who is affected?

This invisible, life-altering condition causes 2-4% of women, men and children of all backgrounds worldwide to suffer.  (That’s 10 million Americans alone.)  The disorder can strike suddenly or occur as a gradual increase in symptoms, indicating changes in the central nervous system (neuroplasticity).  Sensory information (such as light, sound, and touch) becomes amplified by the central nervous system, causing the brain to respond with increasing pain and symptoms.  FM severity often increases over time and may become disabling.

FM takes its toll on once healthy individuals, especially between ages 20-60.  Escalating stress and fear of what might lie ahead if symptoms worsen can contribute to anxiety and depression.  There are no cures for fibromyalgia; however, as with any illness, some symptoms can be controlled with carefully improved lifestyle changes.

FM is a physical disorder, not a psychological condition. The most common constellation of FM symptoms (widespread chronic muscle pain, sleeplessness, relentless fatigue, cognitive dysfunction, and a host of other overlapping conditions like TMJD, IBS, migraine, interstitial cystitis, metabolic syndrome, endometriosis, and vulvodynia) can wax and wane over time.

For more information, click here go to and for survey results of symptoms other than pain, click here.

Celebration in Portland!

Meeting new friends and making fibromyalgia visible – May 12 Fibromyalgia Awareness Day

DATE: September 2016
TIME:  TBA
LOCATION:  TBA
ADDRESS:  TBA
REGISTER:  crowdrise.com/togetherwalkportland
JOIN CONVERSATION:  facebook.com/Together Walk – Portland, OR

(Portland Fibromyalgia Support Group), in collaboration with the National Fibromyalgia & Chronic Pain Association, is delighted to host a Together Walk.  Come and meet others!  Please invite your family, friends, colleagues, elected officials, and healthcare providers to a health and fun event to raise awareness and research funding for fibromyalgia.

Want to help out? We love our volunteers!  Please go to (volunteer.spot) to learn more about the Purple People and sign up.  Thanks!