Living with Fibromyalgia: Part II

In Part II of my post on this 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.

It became important to 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 deep into my flesh 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!  

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!


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5 thoughts on “Living with Fibromyalgia: Part II

  1. Hi Lois –

    I’m a former college professor also “retired” by my condition (along with about six others and who knows what else is on the horizon) who has followed a similar trajectory, though I’ve had fibro longer (1992; on disability since 1998). I started my “fibroblog” in September, and interestingly, you and I chose the same WordPress template.

    Your summary of the research pretty much covers it. But I think the medical researchers are wrong in saying that it’s stable. My own experience and the experiences of anyone else I encounter whose had this for a long time is that indeed it can and does get worse. I firmly believe that a longitudinal study would prove this – but nobody’s going to put the money required into such a study.

    Most of the treatments you mention are unfortunately inaccessible to me as Medicare doesn’t pay for them, and even if it did the co-pays would be more than I could handle anyway.

    For me the #1 most beneficial strategy (in addition to going gluten-free) has been exercise — many forms, but best being water -based exercise. Currently I’m developing a water-exercise program specifically for people who suffer chronic pain that goes beyond others that I’ve encountered and focuses on strength training in addition to flexibility and moderate aerobics. I chose this direction because circumstances made it the only possible one for me — although there are many “official” water exercise and therapy programs available in my area, I cannot afford a single one of them. However, the local high school pool gives me lots of pool access with its community access hours, and so I went about creating my own program with inexpensive equipment I found at toy and discount stores and adapted to pool use.

    You can read more about it here: (currently only a collection of relevant links to other parts of my blog):

    http://fibro2fabulous.wordpress.com/just-one-more-an-aquacize-program-for-chronic-pain-relief-and-fitness-improvement/

    I look forward to reading your blog in more depth.

    • Thanks so much for writing. Interesting, our similar backgrounds! And, I don’t know how I could have forgotten in my list of interventions, but due to your mention of strength training, I remembered my strength-resistance training. I’ve done this with a trainer regularly for about two years. Can I blame fibrofog?? I don’t think so. You are right–this is good because it balances the muscle work and, for me, keeps me upright and able to do steps more easily.

      Yes, and about the progression. A longitudinal study would be best. I hadn’t even thought that, of course, the advent of my costochonditis is certainly a deteriorating type of change.

      I haven’t written about my fibro on my blog, but I will be starting to. I started my blog to push my book (nursing career memoir) and it has evolved into snippets on anything.

      I look forward to checking out your blog, and wish you great success on your aqua program. I am very fortunate to have the resources that I’ve had to pursue treatments. And I realize that it not true for many sufferers of chronic pain. But we can support each other online!

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  3. Pingback: Caregivers Write Your Stories (#5) / Living with Fibromyalgia Part II | Lois Roelofs

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