We can end stigmatization by making fibromyalgia visible together

Today a woman with fibromyalgia called my office frantically searching for legal guidance. In the midst of a contested divorce, Julie (not her real name) was experiencing fibro flares exacerbated by a car accident two weeks earlier. Earlier that day, she was seeking a delay from the court for the divorce proceedings while she recovered. After explaining that she had fibromyalgia and was in more pain since the accident, the judge asked her, “How did you get to court?”

“I drove.”

“Since you were able to drive, and you look just fine to me, I deny your petition to delay the divorce proceedings.” And the judged closed her case, changing her life forever.

Through her tears on the phone, Julie told me what she had wanted to tell the judge. “Your honor, I didn’t sleep last night because I was afraid if I used my prescription sleep medication, I’d sleep through my alarm to wake me for this hearing. And then I drove here two hours early and waited in the parking lot so that I wouldn’t be late. I am not able to defend myself and cannot afford an attorney to help me with the divorce.”

My heart could feel her anxiety, fear, isolation, and fresh insults. I also knew that she was in serious emotional distress. After talking together, I took a walk for a drink of water and reflected on how often insensitivity and judgment about debilitating and life-altering pain play out in everyday life. This stigmatization is often internalized by the person in pain–by thoughts that they did something wrong, or they are emotionally unbalanced, or they are too sensitive. Stigmatization increases stress and results in higher pain levels with less functionality.

The skin on my back usually feels sunburned. The carefully chosen, padded cushion on my work chair and the lumbar support cushion are ergonomic adaptations I need to work at my desk, which is personalized with sawed down legs. Desk lamps provide soft light to work by because the blinds on my window are closed; the sunlight and overhead fluorescent lights tire me easily. Few people know of the extra effort and unconventional adaptations (like Julie’s and mine) that people with fibromyalgia must expend to participate in society and meet responsibilities.

I knew exactly why Julie had stayed awake all night and had driven to the courthouse early. And her impending divorce affirmed the findings by University of Michigan researchers in 20 years of data on 2,717 couples (where at least one of the partners was over 50). They found that not only did 31 percent of marriages involving at least one sick partner end in divorce, but the risk of separation for older couples was higher when the wife, not her husband, was ill.

You’re not alone in your struggles with fibromyalgia. Living with this life-altering condition is very challenging. Judges and officials who create policies and won’t listen to the lived experiences of people with chronic pain conditions and include their expertise in consideration when rendering decisions and recommendations are guilty of perpetuating stigmatizations at the highest levels of authority where mutual respect and leadership are expected.

Changing American cultural perceptions and stigmatizations about pain must start with making it visible. Your voice matters. Please join us in a Together Walk near you or support a virtual walk. Thank you.

What I wish I had known about fibromyalgia (part 2)

(Part 1 of this blog was published on March 18, 2018.  Please click here to read it.)

If you wonder at times if you’ve got brain fog, it’s probably your brain saying hey – you better change something because my connections aren’t working so well today.

Unexpected physical symptoms will occur: low grade fevers, food intolerances, migraines from bright lights, feeling agitated, ringing ears, extreme tenderness to touch (even your scalp), deep physical fatigue, and funny, rearranged words like kin pushion instead of pin cushion will pop out of your mouth during conversation. Don’t be alarmed. Take a few deep breaths and center yourself. Then immediately get some rest. These are FM symptoms that come and go. There are too many additional physical sensations to list, so I’ll just encourage you to lovingly accept yourself, stay positive, and think about something that you enjoy.

Surround yourself with uplifting beauty. Be honest about setting health goals – walking for two minutes daily and cutting out wheat are realistic places to start. Keep moving because your muscles will stiffen up after staying in one position for more than 15 minutes. Stay hydrated to lessen your headaches.

After enduring the brain-seizing pains and life-altering symptoms, you still have two big, hard things to do. Eliminating both toxic relationships and allowing a period of grieving over “what could have been” will improve your health. Connect your mind and body and spirit. Learn to love yourself.

Recognize when depression sets in and let someone know what’s happening. Be open to talk therapy. Tools—ways of changing how you see things—will free your mind of cultural taboos about being sick.

Be present. Regularly let yourself be off duty and watch clouds. Your brain needs a rest because it’s been so busy managing the extrasensory perception and overload of neurochemicals.

A different, interesting, and purposeful life is ahead of you. Your life will be enriched in ways you cannot anticipate now. Hang in there. Connect with others who understand. Together you’ll learn to love life again.

Gentle hugs,

Me

Newly diagnosed? What I wish I had known about fibromyalgia

Someone asked me what I wish I had known about fibromyalgia at the height of my misery and pain, and when I first suspected that I had FM symptoms. So, following the suggestion I’ve read time and again in books, I wrote two letters to myself–looking back with advice and looking ahead with hope. I hope you’ll comment and share your thoughts of what you wish you had known earlier about fibromyalgia.

Dear Friend,

In the coming months, you will be walking a unique and unfamiliar path. Nothing in life so far has prepared you for the changes your body and spirit will endure.

Take heart, because others will reach out and encourage you to trust your intuition. Be still and listen carefully despite the searing, stabbing, and throbbing pains. Quiet your mind when the world spins madly around you with a confusion of sound and light. And when you feel your life force slipping away, gently evaluate why. Have a touchstone to stay grounded when nothing makes sense and mixed-up words roll off your lips. You’ll be okay.

The bizarre sensations like when your hair hurts, or you feel like screaming after sitting on a hard chair for a few minutes, are symptoms of central sensitization. This means your central nervous system responds to your environmental stimuli in a heightened and hyper-vigilant state. Learn what calms your body and keep it nearby–lavendar and a silk scarf in your purse. Give yourself permission to stand and walk anywhere at any time.

When you’re feeling really out of whack, strike a Tibetan bowl to the beat of shamanic drumming. You’ll laugh about this suggestion because you always liked the Beatles over earthy music. Crying over changed life dreams will help. More sunshine improves your pain and spirits.

For a couple of years record your daily activities and their effect on symptoms. And for heaven’s sake, wear a loose dress when your bra and pants cause your back to feel like it’s sunburned. Little steps really do lead to big changes – for both good and bad. Don’t get lazy about eating nutritious food or going to bed on time.

 

(to be continued…)

Fight stigmas that harm people with fibromyalgia

“Imagine having pain all over your body, constant headaches, feeling exhausted all of the time, and your mind always in a fog,” Terry McSweeney recently told a local audience.  “Now picture that no one believes you, not even your doctor. That is what fibromyalgia is for many.”  Terry lives with this disease every day.

A severe shortage of pain specialists in the U.S. means patients have to rely on primary care physicians who are not trained in treating pain, including the integrative, multidisciplinary pain approach that patients with fibromyalgia need.

Pain is the number one reason people seek medical treatment. Yet U.S. medical schools allot a median of nine teaching hours on pain and its management, or .03 percent of the total curriculum hours over four years of training. Canada provides 19.5 hours.

“Untreated chronic pain conditions like fibromyalgia have a devastating impact on individuals, often resulting in disability. Careers are cut short, lives are derailed. No one is immune from developing chronic pain,” said Jan Chambers, founder and president of the National Fibromyalgia & Chronic Pain Association.

Myths and stigmas about fibromyalgia influence how people with this neurological disease are treated. Many patients report that it’s like the worst flu you’ve ever had, but it lasts forever. Some patients recall their severe pain starting after motor vehicle accidents, surgeries, or serious illness, and never leaving.

Volunteer Together Walk organizers are trying to break the myths and stigma, and they need your help.  Please register for a Together Walk because together we’re stronger.  And if you’d like to be a volunteer to spread the word even farther,  we’ll ply you with gentle hugs!!

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!

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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Together Walks to combat chronic pain public health crisis

50 percent of all veterans and 80 percent of veterans returning from Iraq and Afghanistan suffer with chronic pain.

News – FOR IMMEDIATE RELEASE

February 7, 2017

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 will be held in California, Oregon, Illinois, North Carolina, Virginia, Kentucky, Connecticut, Tennessee and Pennsylvania. The events include a 1K/5K walk, an educational program, a health expo, a raffle and musical entertainment. Individuals can also raise funds and awareness in their local community by creating a team in the Virtual Together Walk.

“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, NFMCPA 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 5 million Americans, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. 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. “Your voice matters. 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, individuals can:

  • Raise fibromyalgia awareness by educating local communities and political leaders about the disease
  • Alleviate stigmatization of people suffering with chronic pain diseases
  • Create more research funding for new exploration in areas such as small fiber neuropathy, cervical cord compression and myofascial release that may bring new pain treatment
  • Increase support by providing local, accessible resources and information for daily living to patients
  • Promote the ramifications, including financial consequences, of chronic pain to the public, legislators, medical community and government agencies.

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

Together Walks in Louisville, Kentucky; Nashville, Tennessee; and Portland, Oregon, will coincide with September Pain Awareness Month. Dates are pending.

To donate to or register for a Together Walk, visit crowdrise.com/togetherwalks. For more information, visit togetherwalks.org.

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

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

NFMCPA, 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

Amanda Wray, Communications Director
amanda.nfmcpa@gmail.com; (O) 801-200-36278

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Virtual Together Walk

DATE:  May 1-31, 2018
LOCATION:  In Your Community or Online
CREATE AN EVENT:  Events.fibroandpain.org
*JOIN CONVERSATION: Virtual Together Walk Facebook Event

The National Fibromyalgia & Chronic Pain Association are delighted to host a Virtual Together Walk just for you! Please invite your family, friends, colleagues, elected officials, and healthcare providers to a healthy, fun event to raise awareness and research funding for fibromyalgia.

Why a virtual walk?

It’s for YOU.

We’ve organized a virtual Together Walk so you can form fundraising and friendraising teams online, even while you are at home. Everyone can participate regardless of health status or ability to travel to specific locations. You can participate in the Together Walks by donating, fundraising, or walking locally. The changes that you make for people impacted by life-altering, chronic pain diseases is amazing and appreciated.

How does a virtual walk work?

A virtual walk raises awareness of chronic pain diseases and funds for research. It is created online and can have a live event in the community. Both use The HUB or events.fibroandpain.org website. For NFMCPA recommendations for a successful community event, use the step-by-step guides below.

Online

  1. Join the Virtual Together Walk and set a team fundraising goal. Form a team of your friends, neighbors, support group members, and family. Or choose to participate on your own, knowing you are part of something bigger! Raise funds for research. For ideas, check out the fundraising toolkit.
  2. Order the official Together Walk t-shirt to raise awareness everywhere you go! You make a difference.

Live in your community

  1. Join the Virtual Together Walk and set a team fundraising goal. Form a team of your friends, neighbors, support group members, and family. Or choose to participate on your own, knowing you are part of something bigger! For ideas, check out the fundraising toolkit.
  2. Pick a location and date to host your local walk. Rolling, strolling, walking, or running is best scheduled during the month of May in celebration of May 12 Fibromyalgia Awareness Day. Choose your distance: you may walk around the block, do a 1K walk at the local mall, or even try a longer walk or run around your neighborhood. Do what you can. There is no distance too short. Post a team update on The HUB with the details! Want an example? See Terry McSweeney’s 2016 Virtual Team – Fibromyalgia Pathways.
  3. Order the official Together Walk t-shirt, and create team signs to raise awareness during your local walk.
  4. Take a photo of you or your team and share it on social media or email it to us at info@togetherwalks.org. We invite you to use #TogetherWalks and #IWalkForFibro. Tag us @togetherwalks on Twitter, Instagram, or Facebook.  We invite you to share anyway or anywhere!

North Carolina Together Walk

DATE:  Saturday, May 6, 2017
TIME: 8:30 AM Registration; 10:30 AM Walk Opening
LOCATION: Clayton Community Park
ADDRESS:    1075 Amelia Church Road, Clayton, NC 27520
REGISTER: crowdrise.com/NCTogetherWalk
*For step-by-step registration instructions, please CLICK HERE.
JOIN CONVERSATION:  North Carolina Together Walk Facebook Event

Ally Against Pain Cortney Petit, 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 follow these easy steps to learn more and sign up.  Thanks!

1) Click here to see the online signup.
2) Review the options listed and choose the spot(s) you like.
3) Sign up! It’s Easy – you will NOT need to register an account or keep a password.


Interested in advertising, sponsorship, or exhibitor opportunities? Contact the Clayton team at cortneypetit@gmail.com or 910-554-6202.

Louisville Together Walk

DATE: September 2017
TIME: Coming soon!
LOCATION:  Coming soon!
ADDRESS:    Louisville, KY
REGISTER: Coming soon!
*For step-by-step registration instructions, please CLICK HERE.
JOIN CONVERSATION:  Coming soon!

Kentuckiana 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.

Check back for details soon! We’re excited to launch registration in January and hope to see you all there!


Interested in advertising, sponsorship, or exhibitor opportunities? Contact the Louisville team at 812-207-5728 or fibromeetup@gmail.com.

Please click here to learn more about our Louisville organizer or visit visit www.kentuckianafm.org.