Reprinted with the kind permission of Barbara Keddy.
~ Eleanor Roosevelt ~
In my view, fibromyalgia is precipitated by the emotions of anxiety/fear which began perhaps in utero, but more likely early in life in which a child develops a hyper-aroused nervous system. Traumatic episodes experienced in a highly sensitive person is a fertile place for fibromyalgia roots to take hold. Generally, this dis-ease (not disease) begins to show its ugly face early in midlife. As a youngster, this child is often said to be ‘highly strung’ or ‘too sensitive’ or ‘too fearful’. One woman I interviewed said she was likened to a ‘hot house orchid,’ fragile and overly empathetic. I have yet to hear any of the hundreds of people I have either spoken with or read about who did not say somewhat the same about themselves. Tuned in to the world in a hyper-vigilant, overly caring way, the parts of the brain which can distinguish between that which is safe, or conversely fearful in our environment, is in a state of disarray. Anxiety predominates the personality of the fibromyalgia person.
Those of us with fibromyalgia have neural networks that are quick to assume the worst and the anxiety/fearful emotions keep us in a state of upheaval. It becomes a roller coaster ride. The results can be devastating. Many are in the health professions, particularly nursing and social work, where they become high achievers in caring professions. The same can be said of the military where PTSD has become extremely noticeable of late. Witnessing and experiencing trauma in war time areas is extremely fearful, particularly for the overly sensitive person. Note, for example, Florence Nightingale who was a nurse in a war. Ms. Nightingale is thought to have suffered from fibromyalgia.
Years of living as a person who is attuned to the atmosphere in any environment has allowed us the ability to read people and situations more easily than most people. We can almost feel the anxiety of another. Chronic anxiety and fear, two debilitating emotions, result in a myriad of physical ailments such as pain, fatigue, insomnia, itching, and digestive upsets among the more common ones. Silent and invisible as this condition is, we become demoralized and soon depression sets in. We long for peace and calmness which become almost non-existent. People with fibromyalgia become the walking wounded living with chronic pain.
We are generally very hard on ourselves, believing we are hypochondriacs and malingerers. I often call myself whiny and have to pay attention to what I am telling my brain that reinforces negative feelings about the kind of person I am. I can give in to fear non-stop if I don’t admonish myself with a ‘STOP’ message. Carolyn Gimian in the April 2016 journal Mindful writes: “Fear, while critically necessary for life itself, can be horrifying and crippling. It can also eat away at us day in and day out.” (p.59). The title of the article is “Face Fear and Keep Going.”
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I believe that while over a lifetime we have become anxious and fearful about many things, it becomes much worse when we have a diagnosis of fibromyalgia. Then we begin to think in catastrophic terms: What if I become totally disabled? What if this pain never stops? What if I become totally house-bound? What if there isn’t anybody to look out for me? Am I about to have another pain flare-up? Our brains are forever seeking out where we have perceived or experienced fear in the past and imagine that we should be fearful in the moment. We become emotionally dis-regulated. Our plastic brain which is stimulated in a particular way becomes more and more enmeshed in our pain and/or other debilitating symptoms.
In one of her incredibly insightful blogs, Bronnie Thompson (in adiemusfree, February 14, 2016) writes about pain memory and association and the “never-ending network of related experiences and memories and relationships.” For example, words, images, locations, even smells, can bring about an association with pain, which is one of the criticisms I have of pain clinics. Several of the participants in the month-long class I attended said their pain was much worse after the constant reminder of living with chronic pain! Their anxieties became worse as they listened to stories of others whose pain seemed to be more or less intense than theirs. If it was more, they wondered if they would become as bad as the ones who seemed to be suffering intensely, and even if it was less, they still wondered if they were in more danger as time went on. The brain and its neural networks is intriguing, forever seeking out real or perceived danger. For those of us with fibromyalgia, it is a heightened interweaving of various components of the brain dwelling on fearful possibilities. It is neuroplasticity going wild! Neurons continue to misfire.
Ah, but there are solutions to this noisy brain of ours. I have quoted Dr. Norman Doidge elsewhere in other blogs about his book The Brain That Changes Itself, as he writes about how the brain is not fixed but has adaptive abilities. Among many of his suggestions is the simple act of conscious walking meditatively or using music and voice to stimulate brain circuits, or touch therapy, among other ways of changing the brain. Those of you who have practiced meditation have no doubt been part of walking meditation practices. The brain can heal itself and it can find new ways of taming those neurons which are so quick to send messages of fear and anxiety through a conscious plan to bring about change. Exercise of any kind, which need not be vigorous, is a beginning process for those of us with a desire to experience peace. Our racing minds can be tamed with even a simple practice: take a one-minute mindful pause several times a day.
As I watch my two granddaughters bounce joyfully in the air, I am reminded of the ways in which their brains are in tune to happiness and the exhilarating moment that movement can bring. While we need not or cannot(!) ‘jump for joy,’ we can at least take a daily walk, even if for five minutes, to help make peace with our emotions.
About the Author: Barbara Keddy, BSc.N., M.A., Ph.D., Professor Emerita, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada, has lived with fibromyalgia for more than 40 years. Barbara has been interested in social justice issues throughout her professional career, with particular focus on women’s health, resulting in her book Women and Fibromyalgia: Living with an Invisible Dis-ease.