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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 tende...

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.