Writing about Fibromyalgia: The psychological and physiological effects

“There is no greater agony than bearing an untold story inside you”, Maya Angelou

A very interesting interview awhile ago on CBC Radio with Michael Enright as host. Dr. Suzanne Koven, who is a Massachusetts  General Hospital Writer-in Residence and a primary care doctor,  writes, teaches and speaks about the healing power of story writing. She was Enright’s guest. It has allowed me to ponder upon my own need to write about fibromyalgia and in turn for others to comment on my blogs. It becomes a shared community of those of us with chronic pain; it also allows me to reflect upon how I came to this point in life when I have finally completely accepted that I have a life long challenge ahead of me.

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Fibromyalgia and the roller coaster of emotions

” You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face”, 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.

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Fibromyalgia and the brain

“Your brain is the command center of your body”, Daniel G.Amen

There are about 100 billion neurons within the nervous system ; the neuron is the basic working unit of the human brain. Just imagine that! All these little neurons (cells within the nervous system) communicate with one another to transmit information through a complex web to other cells. The chronic pain that we fibromyalgia sufferers deal with on a daily basis is produced by our brain from these neurons. Ah, but we can control this pain, if we remember control rather than eliminate! So, what have researchers found about how this can be done? What can we do to take charge of these neurons that seem to be in a constant state of firing off messages of pain? There are, in fact, several strategies that seem promising, but only one will be discussed here, as its relationship to Mindfulness Meditation is another which I have discussed in depth over the years. In my view the two are closely related.

A popular approach to pain management is a form of therapy called ‘Acceptance and Commitment’. Primarily this means an acceptance that one does have pain, it is chronic, and yet to go on to engage in those things in life that gives one  pleasure. In short, it is a commitment to pleasurable activities by not engaging in negative thoughts about the pain, what caused it, and all memories of the past experiences of this pain. This kind of therapy, in my view, can be as effective through Mindful Meditation. It is possible to change the brain through discipline and consistent letting go of the thoughts that reinforce the feelings associated with the pain. The brain, after all, is plastic (“neuroplasticity”, which I have discussed so often in other blogs) and can change. That doesn’t mean the pain will go away, but rather it is an acceptance of it and a commitment to live life to the fullest by exploring the thoughts that arise in relation to the feelings and a willingness to accept what it is (again my favourite quote : “it is what it is”). An example that I use while meditating is this- I tell it I haven’t the time to think about it right now. I say ” I will make an appointment with you (the pain) later on, but for now I am letting you go from my thoughts”. It may sound hokey but it does work. I wish I could say that I am always successful with this strategy, but of course it doesn’t mean the pain has disappeared. Rather, it helps me to live life as fully as I can accepting my dis-abilities, rather than giving in to hopelessness. It is giving those little neurons a message to take to the brain that is less anxiety provoking.

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Fibromyalgia and over-exercising: no focused attention

“Besides focused attention, other factors that enhance neuroplasticity include aerobic exercise, novelty and emotional arousal”, Daniel J. Siegal

I have been absent from writing on his site for over two months because I did not practice what I preach. While I have been an advocate of neuroplasticity, that is, the power to change our brains, I have not heeded that which I know to be an approach that is safe for those of us with fibromyalgia. In fact, aerobic exercise, novelty and emotional arousal are the three key ingredients of a health lifestyle for those of us with chronic pain. Focused attention is therefore paramount for us; we need to be constantly in touch with the changing circuits of the mind. Mindfulness meditation is one of the key links to focussed attention,  to living in the moment. But, it is the combination of the four elements cited above that present a balance for those of us with the overstimulated nervous system that challenges us daily.

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Fibromyalgia and Aging

“Life has got to be lived-that’s all there is to it. At seventy, I would say that advantage is that you take life more calmly. You know that “this,too, shall pass!”, Eleanor Roosevelt

In my book I write about the confusion in the research regarding whether or not fibromyalgia improves (or not) with aging. I now know that there is no easy answer to that question and that it may improve for some but for many the opposite is true. Aging brings about its own aches, pains and fatigue that often cannot be differentiated from those of fibromyalgia. In fact, both may  be exacerbated as one ages.

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Changing the brain/Rewiring the brain/Training the brain: Managing fibromyalgia

YJ_052010_TeenYoga_01“Every man (sic) can, if he so desires, become the sculptor of his own brain”, Santiago Ramon Cajal

I have before me books, newspaper clippings, magazines that speak to the phenomenal advances that are occurring in the area of brain science and remapping the brain. Just this week I have read in our Canadian newspaper (The Globe and Mail) about brain research exploring the differences in social economic status (SES) of children, in particular regarding children raised in poverty. The  June edition of Yoga Journal speaks to training the brain through meditation. The book Buddha’s Brain explores the brains of those who meditate, while the magazine Shambhala Sun has an article  (May edition) on this very topic as well. All of these I have read  (or re-read) in just one week. Interestingly, apart from the Buddha’s Brain book,  and the research cited in the newspaper, the other two are magazines not known to be ‘scientific’ in nature.

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Fibromyalgia, chronic fatigue and the anxiety-prone brain

” The tenuousness of modern life can make anyone feel overwrought”, Robin Marantz Henig

An article in the NewYork Times Magazine, October 4, 2009 by Robin Marantz Henig, entitled Understanding the Anxious Mind has led me to speculate about the anxious, highly reactive, overly sensitive temperaments of those of us with fibromyalgia and chronic fatigue syndromes. While I am not the first to equate a hyperaroused nervous system with these two conditions, I believe that the new scientific information regarding the brain, remapping and neuroplasticity must also be taken into account if we are ever to reach some kind of understanding of both syndromes. 

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Fibromyalgia, ‘goodism’, self-sacrifice,”giving yourself away”

untitled“Self development is a higher duty than self sacrifice”, Elizabeth Stanton

As I read more and more about brain mapping and how to change the pain mappings in my brain I am reminded about how intensely I wrote in my book regarding the highly sensitive person (HSP, according to Elaine Aron). This is the ’empath’, the person who senses what other people are feeling and takes on the emotions of others as though they were her/his own( I don’t mean this in the usual sense of the ‘psychic’ person, or in any mystical way). I still stand by that description of the person with fibromyalgia. We are like a toxic sponge! Now, I believe that this type of person (mainly, but, of course not solely, women) has the personality characteristics of the self sacrificing, doing good for others (what  Dr. James Rochelle calls ‘goodism’) and ‘giving yourself away’ (a term Nick Matheson coined). When I think of Florence Nightingale on this May day, her birthday month, suffering from fibromyalgia, I think of her as a primary example of self sacrificing.

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