#ISpeakForPain

My pain journey began with a bicycle wreck at the age of 10.  As children will do, I went speeding down a hill, hit some loose gravel, flipped over the handlebars, landed on my knees, and did a terrific slide along the pavement.  My knees were torn up, but I think I got about a 5.9 for style.  The girls at school all thought my knees were gross because they broke open and bled every time I bent them to go up the stairs, but the guys thought I was cool, at least for a while.  Anyway, the skin grew back over my knees, but my leg pain never went away.  My mother, who has always been an incredible advocate for me, took me to doctors, including ones at the Cincinnati Children’s Hospital, which is the number three children’s hospital in the nation, but we were always told the same things.

•          We don’t know why her legs hurt
•          It’s growing pains
•         Or, my favorite, there’s nothing wrong with her, so don’t encourage her or she’ll grow up to be a hysterical female.

What that taught me was that my pain wasn’t important, so I taught myself to suffer silently, to hide behind a smiling face.  On the days that I couldn’t do that, I hid in my room, or up the crabapple tree with a book, where no one could see my tears.

As I grew up and out on my own I learned to manage my “mystery illness.”  On those occasions when it would flare up beyond my control I would seek yet another doctor.  Again, I was told such things as

•          We can’t find anything wrong with you.  Why don’t you see a psychiatrist?
•         Who would say, I can’t find anything wrong with you.  Go back to your doctor.
•          And, my new favorite, you’re a woman, you’re going to hurt, get used to it.

Once again I was taught to hide my pain behind a smile, to suffer silently in public and save my tears for when I was alone.

Finally, after moving to Nashville in 1997, 24 years after my chronic pain began, I found a doctor who listened to me.  He was honest and told me he had no idea what was wrong with me, but he vowed he would find me someone who could figure it out, and he eventually did.

In 2007, after having been bedfast for nearly 16 weeks thanks to my latest flare, my primary care doctor hospitalized me for something like the twelfth (maybe it was just the seventh) time that summer so I could get a rheumatology consult, which my mother-in-law had urged me to request.  The rheumatologist asked me a few questions, poked on some pretty painful spots on my body, looked at me and said, “You have fibromyalgia.”  I sat there and thought to myself, “So…this monster DOES have a name! And if it has a name I can fight it.”  While this was running through my head the doctor silently wrote a prescription, handed it to me without a word, and turned to walk out.  I asked, “Is there anything else I can do??”  He tossed, “Find someone to talk to,” over his shoulder as he walked out the door.

I only knew one person with fibro, so I called my mother-in-law.  Shelia and I had always gotten along well, but because of fibro we became friends.  We thrilled in conversations about our weird symptoms because there was finally someone who understood, someone who just GOT it. 

Once, during one of our talks, Shelia said, “There have to be more people out there.  Why don’t you find them for us?”

I put an ad in the paper, found a meeting place, and set up everything.  No one came.  I tried it again.  No one came.  I wanted to give up, but Shelia encouraged me to give it one more try.  It worked.  We found three other people who “got” us.

That’s how Fibro Friends began, and today we have over 500 members spread over 8 groups that either already meet or are forming in Tennessee.  That’s 500 people who understand what it’s like to live with chronic pain.  We get it.

Sadly, Shelia passed away last month, the day after Mother’s Day.  In her honor, and to raise funds for awareness and research, we’ll hold the first annual Shelia’s Walk in September 2017.  We chose September because if you know Nashville then you know that we have numerous walks in May when Fibromyalgia Awareness Day is, and we don’t want to get lost among them.  But we also chose September because Shelia’s birthday was September 2^nd, and it’s Chronic Pain Awareness Month. What could be more appropriate? I feel Shelia’s Walk is the least I can do for Fibro Friend number one, the least I can do to thank her for being my friend.

What I now take away from my pain journey is the importance of support and understanding.  I could not have made it this far without Shelia, without any of my Fibro Friends for that matter. 

I live with chronic pain, but I am not an addict.  I am a daughter, a sister, a mother, a friend, a volunteer, a pain advocate.  I am not seeking drugs.  I AM seeking a better quality of life.  To cope with a life filled with chronic pain we need support and understanding, not just from each other, but also from the medical community and our government.  This is where the National Pain Strategy comes in.

Studies from the Institute of Medicine (IOM) and Department of Veterans Affairs reveal that 4 in 10 American adults and 80 percent of veterans returning from Operation Iraqi Freedom and Operation Enduring Freedom suffer from chronic pain, at a cost of more than $600 billion annually (Institute of Medicine, 2011; Lew HL, et al., Journal of Rehabilitation Research & Development, 2009). Despite this significant toll, plus the fact that pain remains the number one reason that people seek care from a health care provider, our nation continues to invest meagerly in chronic pain research (only 4 cents per patient in 2015); poorly trains and educates our health care providers on the proper assessment and management of pain; and provides minimal to no reimbursement for multidisciplinary non-pharmacologic pain management strategies – a key recommendation called for in the new CDC Guideline for Prescribing Opioids for Chronic Pain.

Implementing the objectives of the National Pain Strategy will change this! The NPS provides a clear and actionable roadmap that will generate critical population research and health services data; advance prevention and pain care strategies; address disparities in pain assessment and treatment; improve pain service delivery and reimbursement; improve health care provider education and training; and foster public education and communication strategies. Further, the NPS clearly delineates short-, medium-, and long-term deliverables, identifies key federal and non-federal stakeholders, and recommends strategies to measure impact.  

We need the National Pain Strategy.  #ISpeakForPain, and I speak for the #NationalPainStrategy. 

Why don’t you speak, too?  Take a photo of yourself holding a sign that says #ISpeakForPain and tell why you are speaking out, and then post it to social media.  If you live in Tennessee, send a letter to Senator Lamar Alexander asking that he send a letter to the Department of Health and Human Services by the end of June requesting a written implementation plan and corresponding budget from them to be submitted within 60 days of the Committee’s request.  If you live elsewhere in the United States send a letter to you legislative health aide asking them to contact Sen. Alexander about the NPS.  

Together, we can change the face of pain in the United States, but we must act now.  It's as simple as saying #ISpeakForPain.

For more information on fibromyalgia or chronic pain, check out the National Fibromyalgia & Chronic Pain Association.  You can also e-mail me at TnFibroFriends@gmail.com.

Note: This post combines an excerpt from presenation given in Memphis, Brentwood, and Knoxville, TN, to kick off the #ISpeakForPain campaign, as well as a portion of the letter sent to #SenatorLamarAlexander to request that he speak up for the National Pain Strategy.