Fibromyalgia syndrome (FMS) is a disorder of hyper-sensitization, meaning that our bodies are “keyed up” all the time. FMS patients are more sensitive to pain, but also to hot and cold, drugs, spices, preservatives, scents, textures, chemicals, changes in the weather, you name it. 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).
FMS patients experience periodic worsening of symptoms called flares. Flares are usually brought on by stressors of some sort: illness, injury, overwork, emotional stress, etc. Anything that upsets the patient’s equilibrium can cause a flare. While FMS is not officially considered a degenerative disease, patients who live under constant stress tend to degenerate 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 could not do anything but sleep, work, and care for my young child. All too soon, I was unable to work reliably. My environmental allergies interfered more and more with my life. If I was exposed to any infection, I caught it and then had a hard time recovering. I had a chronic low-grade fever with worse fevers any time I overexerted myself. When that happened, I would end up in a condition that seemed similar to shock.1I wouldn’t be able to get warm, and I couldn’t stay awake. I had to go to bed with an electric blanket. I’d had trouble with chronic headaches since I was 17, but now they were migraines. No matter how much sleep I got, I was always exhausted.
The decade immediately prior to my diagnosis was particularly stressful in many ways. I was married and divorced twice. I moved and changed jobs repeatedly to suit my husbands, and I had several surgeries. My pregnancy was a welcome surprise, but not easy, ending in a C-section at 8 months. Those 8 months were full of unrelenting, debilitating nausea.2Not “morning sickness” but hyperemesis gravidarum.
Unfortunately, after finding no relief from various sleep remedies and minor pain meds, I stopped seeking any treatment. 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.
In 1998 I met Sam, and in 1999 we blended our families. That wasn’t an easy process, and the next five years were fraught with anxiety as a result. In November 1999, my ex-husband Wayne died. Our daughter Katie was diagnosed with fibromyalgia in early 2000. Around the same time, I took a bad fall leading to a flare that would not end. For years, I wasn’t able to work outside the home for more than a month at a time.3As a result, I had little to no access to healthcare for most of a decade due to our dysfunctional healthcare system.
I didn’t get serious about getting good care until after I tried to return to college at Southern Polytechnic State University (SPSU) and failed because I couldn’t reliably attend in-person classes. In 2005, I finally persisted in my recovery efforts until I had a good team of specialists.
At the same time, I strengthened my boundaries. I had to lower my standards in some areas, delegate tasks in others, and hire help in some. Some influences had to be removed from my life completely. Those that I cannot avoid are cushioned by better overall 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 can enjoy my family and friends, volunteer, and pursue hobbies.
These two articles come from a research paper I did for a medical communications course at SPSU.