Fibromyalgia, labelling and the brain

“The changed brain stays changed”, Barbara Arrowsmith-Young

This website is one which presents information which I hope is written in easy to understand language without too much academic or medical jargon. Many with fibromyalgia who might be suffering from brain fog or have trouble with focusing do not want to wade through too many technical terms. Since researching the topic of fibromyalgia over three decades, I have to confess that I have somewhat changed my perspective over the years, or elaborated upon ideas that are intriguing but cannot be proven scientifically regarding this dis-ease of the central nervous system.

I continue to rebel against the myth of fibromyalgia as a disease or an illness and in that I remain constant. Fibromyalgia is a syndrome with a constellation of symptoms that often define us, or we are labelled as someone with a certain type of negative personality. While I do believe we are highly sensitive people even that can be deemed negative. There are pitfalls in stereotyping that can become stigmatizing. Even worse, a person with a label can use this to explain away specific behaviours which become embedded in our own minds as unable or unwilling to change. How often have we heard someone say: “Well, that’s just the way I am. I can’t change”? In fact, we can change and the research from the past decades on changing the brain has shown that we are not doomed to remain stuck as a way of thinking about ourselves that is permanent. While I understand the issues around labeling, I have repeatedly used the term hyper-sensitive or overly sensitive personality and highly empathetic in relation to fibromyalgia. However, even the term fibromyalgia itself is a label and I often wonder at the usefulness of using it. Why wouldn’t we want to change the way we see ourselves? The amazing brain research has shown that the brain is not solid but ‘plastic’.

A thought provoking book I have been reading is The Woman who Changed her Brain by Barbara Arrowsmith-Young and although not about fibromyalgia, it relates to the topic about changing the old neural pathways to the brain. Her focus is on neuroplasticity, a topic I have been writing about for some time. A comment written by Alvaro Fernandez of Sharp Brains, a research team tracking health and performance applications of brain science, calls well worn neural pathways “traffic jams in the brain”. Dr. A. Jean Ayres considers them to be a “neurological traffic jam”, or more technically “Sensory Processing Disorders”. Those of us with fibromyalgia do indeed suffer from old brain jams!

Arrow-Smith Young has shown that although she was born with a brain that malfunctioned in many ways and caused her to be labelled a learning disabled child, she was able to change the neural pathways and overcome her dis-ability. Equally as significant about being stuck in the old ways of being, for those of us with fibromyalgia is the fact that more women than men are diagnosed with fibromyalgia. Consequently, there is the danger that women will continue to be labelled as suffering from neuroticism, being overly emotional, weak, hysterical or too excitable, or even as one with a personality disorder. Fibromyalgia itself is often thought to be psychosomatic and someone with it is frequently stigmatized. So, how then can we learn to remove ourselves from this negativity that can doom us to a life sentence of helplessness?

“Neuroscience holds great promise in that it offers insight into the differences between us and the different ways that each of us thinks, learns, processes information, and responds emotionally- all of which are determined in no small part by the singular makeup of our brains. And with an understanding of the plastic nature of the brain, we can harness this property to positively change its functioning” (Arrowsmith-Young, p.36).

Arrowsmith-Young writes about ‘amygdala hell’: “The amygdala is the brain’s threat detector, readying one for flight or fight”, (p.189). While she is writing primarily about children with learning disabilities, there are similar stories of brain fog and lack of focus which are similar to those of us with fibromyalgia. This leads me to the topic of children and whether or not a person is born with characteristics of a highly developed sense of empathy and other attributes of an easily aroused central nervous system, characteristics that bring about the ‘fight or flight’ response, such as that which develops into fibromyalgia. It may be that a person is born as highly or overly sensitive perhaps as a result of a difficult birth or something which occurs in the uterus during pregnancy. It matters less if a person is born with these personality traits or if they are socially constructed in a fearful childhood, followed by traumatic events. What matters is that it is possible to change the brain, even in very young children or as older adults. The brain is plastic, not solid concrete, and that is the gift that is given to all of us who suffer from this malady if we so chose to take advantage of it. This is the biggest way in which I have changed my views on fibromyalgia over the years. We do not need to be this hypersensitive person who is often fear driven by over- stimulating situations. We need not be over -caring, overly-empathetic, in an overly- emotional state, and overly- excited by loud noises, bright lights and other stimulating situations. To suggest that we are born this way and we have to accept our lot in life is to do us an injustice. The social, economic and cultural differences among us are vast,but all of us can find simple, inexpensive ways to work with a brain that has affected our lifestyles and activities of daily living. Although I believe that a person who has a hyper-aroused nervous system portrays hidden traumas, I also believe it is possible to lighten memories of these traumas that are stuck within our brain and affecting our daily lives. In the final analysis it is chronic anxiety that is our challenge, that makes up our ‘amygdala hell’.

Having written these statements now I am uncomfortable about sounding like a parent who is critical of the child who does not behave, wondering why he or she cannot do what is pointed out to them. I am on record as saying that change is NOT easy. It requires discipline, hard work, dedication towards a goal of change. Fortunately though there are many books about the brain that I have cited elsewhere with strategies about how to change the brain.

I am now questioning the many labels that are attached to us and whether or not they are helpful. With constant pain often there is depression. Is being labelled a depressive useful? We do have the characteristics of being highly sensitive and overly empathetic…do those labels help or hinder us? Does this language suggest that we are born as or socialized to become one of these types of people who need special attention because we share similar personality characteristics? Do we need support groups that often enhance our feelings of being different and unique? Have we psychologized ourselves into categories to the extent that we resist change? These are the questions that have begun to plague me of late. It suggests that I may have to turn my previous views upon its head. In fact, I have to change my brain! The world may not be as I have seen it in the past and that is a frightening thought, sending my amygdala into its usual tail spin.

Language is a powerful force and the ways in which physical conditions are written about have within their core the ability to either motivate ourselves or condemn us to acceptance of the status quo. I have recently asked a therapist to help me with the language of chronic pain. How can we find words that are less solidified and less hopeless. She suggested “pain that is stuck”, which implies that it is possible to unstick. So I can now say :”I don’t have ‘chronic’ pain; I have symptoms that are stuck in the brain and I am working to release them by changing the old overly used neural pathway”. Still, I am stuck for words to describe the fibromyalgia syndrome and on the look out for language that will unite us, but not label us negatively.

As early as 2009, my blogs have reflected the many books written about changing the brain. I hope the reader will rush to the library to read some of these many books that will provide some incentive to release us from our labels.

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