Fibromyalgia (FM) is a disorder of hypersensitization, meaning that our bodies are “keyed-up” all the time. FM patients are more sensitive to pain, but also to hot and cold, drugs, spices, preservatives, scents, textures, chemicals, changes in the weather—everything. Our immune systems are often depressed, so we catch whatever we’re exposed to. We take longer to heal from falls and other injuries while being more likely to fall due to issues with blood flow to the inner ear region (see FM Network News, April 2006, p 14).
FM patients experience periodic worsening of symptoms called flares. Flares are usually brought on by stressors of some sort—illness, injury, overwork, emotional stress, anything that upsets the patient’s equilibrium. While FM is not considered a degenerative disease, those patients who live under constant stress do tend to degenerate fairly consistently.
I was diagnosed with fibromyalgia and chronic fatigue syndrome (CFS) after several years of worsening fatigue, increasing, inexplicable pain, and growing intolerance for exercise that didn’t respond to any treatment. I was unable to do anything but sleep, go to work, and take care of Katie. All too soon, I was unable to work reliably. My environmental allergies, which had been relatively easy to manage earlier, interfered more and more with my life. I found myself catching any infection to which I was exposed, however briefly, and had a hard time recovering from them. I had a chronic low-grade fever with worse fevers any time I overexerted myself or was under more stress. I’d had trouble with chronic headaches since I was 17, but now they became migraines. No matter how much sleep I got, I was always tired.
The years immediately prior to my diagnosis were particularly stressful in many ways. I was married and divorced twice, moved and changed jobs repeatedly to suit my husbands, and had several surgeries. My pregnancy was a blessed surprise, but not an easy one, ending in a C‑section at 8 months. Those 8 months were full of constant, debilitating nausea that never went away (far beyond “morning sickness” — hyperemesis gravidarum).
Unfortunately, after finding no relief from various sleep remedies and minor pain meds, I stopped seeking any treatment around 1994. I figured I could simply deal with the pain, and I did for years. I lost more and more functionality, though, as the untreated symptoms worsened. I may never reach the same level of health as I might have had I been more proactive in seeking treatment and in reducing the stressors in my life.
In 1998 I met Sam, and by early 1999 we were blending our families. That wasn’t an easy process, and the next five years were fraught with anxiety as a result. In 1999, my ex-husband Wayne died. Our daughter Katie was diagnosed with fibromyalgia in 2000. Around the same time, I had a bad fall leading to a flare that just didn’t end. I wasn’t able to work outside the home for more than a month at a time for many years. Losing my job meant losing access to healthcare for most of a decade due to our dysfunctional healthcare system.
I didn’t get really serious about getting good care until after I also failed to manage attending college classes in my first attempt to return to college. In 2005, I finally persisted in my efforts until I had a rheumatologist and other specialists, including a sleep specialist and a pain management doctor.
At the same time, I strengthened my boundaries, and I have continued to do so. My family supported me as I found my limits. I had to lower my standards in some areas, delegate tasks in others, hire help in some. I’ve removed certain influences from my life completely. The stressors I cannot avoid are cushioned by better stress relief behaviors.
While I still have pain, fatigue, and other problems, the right treatment, functional behaviors, and family support have made a world of difference in my life. I’m able to work full-time again (from home). I still have to be very careful about my spoons, but I’m able to live a full and rewarding life.