In Part II of my Living with Fibromyalgia topic*, I’ll be telling you about the new “career” I started after retiring early (age 58) from teaching nursing, a new career of “everything” fibro.

Starting this adventure, I read everything my library held and everything I could find online. When I started to see duplications, I quit. I took away five things: no one knows the exact cause of fibro, each person experiences fibro differently, no single treatment will guarantee pain relief, and there is no physical deterioration with fibro. And, most importantly, the fifth thing I read was that it’s possible to learn to live with fibro.

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

It became important for me to listen to my body in order to understand and define my pain. As a new retiree with nothing to do for the first time in over twenty years, I had time to lie on the couch and “listen”. The image that came to me was that of an iron pressing down while racing up and down each arm and leg. The iron was set on COTTON, the highest and hottest setting. The iron was causing burn marks on my extremities—I was sure of it. But, no, looking at them, they looked the same. So, I poked my index finger into every inch of my body that I could reach. Wham. The area under my fingertip felt as if it had been stabbed with a red-hot poker stick straight from the fireplace. So much for the just eighteen tender points used as diagnostic information in the literature. For me, it felt as if I’d been thrown, by order of the King of Babylon in the Bible, into the Fiery Furnace. The one he’d ordered to be seven times hotter than usual.

For the next twelve years (2000-early 2011), I searched for relief of the burning pain, making the rounds of anything promising relief. Each intervention did provide temporary relief, but only one has helped over the long term. I’ll tell you about that last.

But now, I want to list for you all the things I tried, in alphabetical order for simplicity:  acupuncture, chiropractic, cranio-sacral therapy, diet (no sugar, gluten free), homeopathy, massage, medication (trials of over twenty meds), National Institutes of Health drug study (thirteen weeks requiring  six trips to D.C.), pain management program (two weeks full time), physical therapy, physicians (six), support groups (FMS), Tai Chi, therapeutic kinesiology, and therapeutic pool.

Sound familiar? I thought so.

Now, you may be thinking I’m off my rocker. Well, I am. Not only was I trying to get pain relief and some energy back, but I’m also a naturally curious former nurse who loves to study illness and its effect on people. I became my own patient! And, to add a little more spice to my burning pain, in 2006, after a fall that resulted in a broken hip, I developed costochondritis (painful ribcage), which can happen secondary to fibro. That pain has ebbed and flowed, but mostly flowed, since its onset. I still am a “touch me anywhere and I hurt” kind of person. But, if I don’t touch myself, and I don’t feel pain, that is a very good day!

I stayed at the Bethesda Court Hotel during my NIH visits and enjoyed their cozy courtyard.

My time is up for today, so I’ll continue in Part III with the intervention that has helped me most over the long term, and the other information I promised in Part I of deciding to accept—not fight—the diagnosis, and, finally, learning to live with chronic pain.

Stay tuned. And stay hopeful! Today, I live an almost normal life. Whatever normal is!

*Reprinted from my guest post on Annie Nowlin’s Lupus Chronicles blog.

What do you think of the old adage that misery loves company?  I’ve found that to be true just so far. For example, I want to be able to share my challenges of fibromyalgia with others who have it, but I also don’t want to get dragged down by too many pity party stories. At the times when my pain is rougher than usual, I like to hear information about how others cope, and I like to be inspired that brighter moments are possible.

So, a third reason as caregivers to write your stories is to educate and encourage readers  who are trudging through the same challenges or just want to learn about them.

If you write your stories down, you can easily share them. Take, for instance, a new friend I met through blogging, Annie Nowlin. She is a nurse who writes about her life with lupus. In just under two years since she started blogging, she’s had over 12,000 hits on her blog. She tells candidly of her own struggles with lupus, gives encouraging messages, but, most of all, she strives to educate her readers about the disease and other chronic illnesses.

When Annie was “off duty” once for a surgery, I guest posted a series of three for her on my life with fibromyalgia. At that time, she said she’d gotten the most responses to those three posts, showing me that others identified with my stories and found them helpful in their own life with fibro.

So, in the hope that having written my story of living with fibromyalgia will provide information and inspiration to my readers also, I will be reprinting the series here in the next few weeks. Here is Part I of My Life with Fibromyalgia:

Once upon a time…isn’t that the way all fairy tales start? In my former fairy-tale world, I lived the perfect life—teaching nursing, pursuing advanced degrees, working toward promotion and tenure, and flying off to out-of-state conferences. Along with racing toward an ever-expanding finish line, my husband and I raised two children and welcomed three grandchildren. Then, like Annie’s, my career fell off the track.

My fall began on a cold November night in 1997 with a 9:30 phone call from my gynecologist. Why was he calling so late? He broke the news: “Lois, I don’t believe it. This should not have happened. You’ve been active. You’ve taken your calcium. But this baseline Dexascan shows osteoporosis.”

I was forty-seven years old.

He referred me to a rheumatologist for follow-up. As she flexed my legs and poked around my knees and hips, she asked, “How long have you had fibrositis?”

“I don’t have it,” I spit out from my helpless position of lying flat on the cold steel and vinyl exam table. I knew fibrositis  was an old term for fibromyalgia, and I knew its reputation of belonging to crocks, and I was NOT a crock. I was a nurse, after all, and I was not a hypochondriac.

I left the office determined not to have fibromyalgia. But then that year everything that could go wrong, did. Murphy’s Law. Within seventeen months, nine family members and my best friend suffered serious setbacks, from cancers to open heart surgery to spinal cord injury. I began dreading the ring of the phone. Just after I’d jokingly said I was going to leave the phone off the hook, it was our turn. After a call from his urologist, my husband, standing in a frozen state in our kitchen, announced, “I have cancer.”

Prostate. He was the eleventh among his brothers, cousins, and uncles to get it. We knew the drill.

Normally super energetic, my husband didn’t recover fully for almost a year after successful surgery. And, just when I was pretty confident that I’d be granted a semester’s sabbatical from teaching, I fell, kerplop, on our iced front steps one January morning in 2000 while getting in the Chicago Tribune. Of course, as a nurse, I wrapped my tender-to-the-touch and rapidly discoloring left arm in an elastic bandage and drove one-handed to teach a three-hour class. Two days later, with the pain increasing, and when I finally had the time, I drove to the ER. Alone. Just to make sure… When the resident told me my arm was broken, and I’d have to wait two days until it could be casted, I asked why.“You can’t be casted until two days after the break.” Something about the swelling needed to go down. Imagine the flush on my face when I said, “It’s already been two days.”

Soon after the fall, the continued pain in my arm, the transient-turned-constant burning sensation traveling my arms and trunk and legs, the scary icy walk from a hospital parking lot to teach my clinical on a psychiatric unit, the incapacitating arm immobilizer I had to wear while in the classroom, and my growing and endless fatigue—all of these coalesced at once and propelled me across the finish line of my working life. My denial of having fibromyalgia was slowly unraveling.

I was fifty-eight years old.

***

Next time, I’ll tell you about how having fibromyalgia swiftly moved me into a new career, a career of  defining my pain for myself, searching for effective pain relief, deciding to accept—rather than fight—my diagnosis, and, finally, learning to live with chronic pain.

Meanwhile, Happy New Year to all you faithful readers of Annie’s blog. I’m sure we’re all hoping and praying that she can return soon!

***

Lois Roelofs, PhD, RN, is Professor Emerita of Nursing at Trinity Christian College in Palos Heights, IL, and the author of Caring Lessons: A Nursing Professor’s Journey of Faith and Self (2010, Deep River Books). She blogs about everything but her chronic pain at loisroelofs.com

Fibromyalgia Awareness (Photo credit: Kindreds Page)