Fibromyalgia, labelling and the brain

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

The book I have been reading The Woman who Changed her Brain is not about fibromyalgia, but I am struck by  how Arrowsmith-Young has been able to articulate the ways in which one can change the brain. Her focus on neuroplasticity is one  issue I have been writing about for some time now and I hope that the readers will read about  these “traffic jams in the brain” ( comment written by Alvaro Fernandez), or a “neurological traffic jam” as Dr. A.Jean Ayres calls the condition SPD, which in some ways is comparable to fibromyalgia. People with fibromyalgia do have it within our capacity to use the research to  control our  pain and other symptoms of this syndrome . It isn’t easy and requires a great deal of dedicated work in order to change our brain pathways. I have accomplished this only minimally. It is more difficult with older people, but still possible.

Readers will notice that this website is funded by me alone and I do not place ads, nor is this website a money making endeavour. Rather, it is one which presents information which I hope is written in easy to understand language without too much academic or medical jargon that many with fibromyalgia who might be suffering from brain fog do not want to wade through. Nonetheless, since researching the topic of fibromyalgia over three decades, I have to confess that I have  often, throughout the years, somewhat changed my perspective, or elaborated upon ideas that are intriguing but cannot be proven scientifically regarding this condition. This is one such dramatic time that I am experiencing a slight shift in my thinking, or at the very least a questionning of many of my ideas.

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. I also remain firm about the dangers in labelling someone as a personality type, even if it is deemed a positive one, as there are pitfalls in stereotyping that can become self fulfilling prophesy. Even worse, a person with a label can use this label to explain away specific behaviours which become embedded in their 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 with a label, or a way of thinking about ourselves as a ‘type’ that is permanent. While I understand the issues around labelling, I have repeatedly used the term hyper-sensitive or overly sensitive personality in relation to fibromyalgia and even the term fibromyalgia itself is a label and I often wonder at the usefulness of using it.

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 against labelling for those of us with fibromyalgia is the fact that more women than men are diagnosed with fibromyalgia and 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 syndrome 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 nervous system,  characteristics that bring about the ‘fight or flight’ response, such as that which develops into fibromyalgia. Like the previous blog highlighting Scaer’s work, I believe this is an irrelevant issue. 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 childhood. 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, 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 overcome these traumas that are stuck within us and affecting our daily lives.

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 of 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 a 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. Kelly 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 pain stuck in the brain and I am working to release it, 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 these many books that will provide some incentive to unstick us from our labels.

 

 

4 Responses to “Fibromyalgia, labelling and the brain”

  1. Bravo! I loved reading this post. I agree wholeheartedly that with effort, determination and hard work, fibromyalgia can and does change. Yes, it is a multi-faceted syndrome, but i can be overcome. I am fascinated by the brain and in my own work, I have seen many people completely change their lives by addressing the neurological issues you’ve outlined here. Fantastic job, keep up the good work!

  2. kate says:

    Another book I’ve read that has helped me is “Change your Brain, Change your Body” by (George?) Amen. Though his main emphasis is on losing weight, many things he wrote helped me understand better what my brain has been doing relative to fibro, and confirmed some of the methods I’ve developed on my own that have helped me rid myself of fibro pain and the accompanying depression. One point in particular that was helpful was his discussion of Automatic Negative Thoughts (ANTs, he called them) and how to deal with them. I realized that much of my brain hyperactivity involved obsessing on negative thoughts, and the actions I took because of them had put me in an extremely stressful situation that in turn brought on a new (to me) episode of extreme and continual itching. Only recently have I understood that the itching is a manifestation of my fibro, just as much as is my obsessive brain hyperactivity. So even though I don’t have the continual pain of fibro, I’m not “cured”. I am learning, again on my own, techniques to deal with the itching. Your blogs and writings are most interesting and promising, and I thank you for that. So far today has been good.

  3. Thanks Kate: It is indeed possible to change one’s brain through meditation and other techniques. A good strategy is to keep saying something positive out loud during the day, for example, “I will not have itching today”, even if we don’t believe it -still keep on saying it. Eventually the brain uses another circuit and begins to believe it! :-) Thanks for you comments,
    Glad you are having a good day,
    Barbara

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