Archive for the ‘Fibromyalgia’ Category

Fibromyalgia: Christmas/Hannukkah/ Bodhi Day/ Al-Hijira/ Yule/Kwanzaa AND Women’s Work

Sunday, December 6th, 2009

” You must learn to be still in the midst of activity and to be vibrantly alive in repose” , Indira Gandhi

Here we are once again in the season of  religious holidays for many  during this hectic month. Even if a person does not believe in or celebrate any of the holidays, it is impossible not to get caught up in the frenzy and activities of the month. Universally it is generally the women who organize and prepare the food, buy gifts, plan social events and deal with the family relationships which are often fraught with challenges . In the Western world language it is often ”Mrs. Santa Claus” who does the majority of the work!

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Fibromyalgia: Trauma, Sleep disturbances, Night terrors, Sleep walking, Nightmares

Saturday, November 14th, 2009

“Trauma is so arresting that traumatized people will focus on it compulsively”, Peter Levine

There are so many various kinds of sleep disturbances that it becomes somewhat of a check list to differentiate between them all. Some of us suffer from everyone of them. I began having night terrors when I first started school,age 5, and the nuns told us stories of being responsible for killing Christ because we were born with original sin on our souls. Of course this  frightened us and made the entire class cry. We  were warned about sin and hell from the first day. I would hyperventilate at night and lose my breath. I was afraid to go to sleep. This was a serious trauma in my childhood. I began sleep walking. It was the time of the polio scare and this was added to the fears. World War ll had not yet ended the year I began school in Montreal and we were afraid our fathers would be sent away and be killed. There was much to be anxious about. My parents were extremely fearful people; my father has recently been diagnosed as a ‘borderline personality disorder’ which added to my lifelong anxiety.  And so began my lifetime of night terrors and nightmares. The trauma of my adult life is too lengthy to document here (nor is it necessary) but most of us have experienced traumas of one sort or another, whether major or minor. The women in my book tell stories about their own sleep disturbances based upon their life experiences, so I am not unique in this regard.

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Defining fibromyalgia

Wednesday, October 28th, 2009

“Far more than you may realize, your experience, your world, and even your self are the creations of what you focus on”, Winifred Gallagher

I have long been searching for the exact definition of fibromyalgia given that I have written so much and spoken so often about the various systems that are compromised within the body of someone with this dis-ease. To-day I have finally found the right way to express all that I have written about in these blogs and in my book. In particular, I can finally put the theory I espouse in my book to the test as I work to take this demon to a higher level of understanding. In the book I painstakingly explain the social and psychological conditions that are responsible when a person  develops fibromyalgia. Here I present the end result of this theory I developed. The words have been articulated by my massage therapist/osteopath, Peter Goodman who has worked for so many years with clients who have struggled with fibromyalgia, myself included. These are his words (they are very technical, but bear with us), edited somewhat by me, worked through together as a summary of both our views: Fibromyalgia is a syndrome marked by habitually restricted circulation due to a build up of lactic acid within the myofascial system. It is caused by a sympathetic nervous system dominant stress disorder with accompanying dysfunctional brain maps. The work of Dr. Mick Thacker (found online: NOI notes Wednesday October 28, 2009) confirms our view as he believes “that much of chronic pain could be conceptualized as an ‘inflammation in the brain’ “. The PBS documentaries on positive neuroplasticity fill me with hope that someday soon there will be those writing about fibromyalgia and how to change the brain as we understand that link to exciting advances with neuroplasticity  and pain.

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Fibromyalgia, chronic fatigue and the anxiety-prone brain

Sunday, October 18th, 2009

” 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, suffering and struggling

Thursday, October 15th, 2009

“What is required is a willingness to look deeply at one’s present moments, no matter what they hold, in a spirit of generosity, kindness toward oneself, and openness toward what might be possible” Jon Kabat-Zinn

I’m told that pain cannot be alleviated with massage or other kinds of body work(?); massages may feel good but will not help pain, a meditation instructor declared in my presence recently. Furthermore, this expert in meditation says that only by accepting the pain will we be able to reconcile with it. The more we suffer and struggle, the more we will continue to suffer and struggle. It is about letting go.

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Fibromyalgia and cure?

Sunday, September 20th, 2009

” I dwell in possibilities”, Emily Dickinson

The death of Mary Travers of the  Peter, Paul and Mary trio this week saddened me. Last evening I watched a PBS documentary on them which I had seen before. However, watching it again had a profound effect on me. Tomorrow is International Peace Day and I began to reminisce about the past and all they had accomplished in their lifetimes of social activism. How did they continue this phenomenal work, day after day, year after year without giving up hope for a better world? A world with exquisite beauty much of which is constantly being bombarded by destruction. quilts 014

I am of the view that those of us with fibromyalgia ‘feel things too deeply’ and are unable to let go of the pain of our lives or of the world. Yet I looked into the eyes of those three phenomenal people and others featured in the documentary and have known how they too deeply felt the pain of the social issues that plague the world. How do some ‘let go’ of personal and social trauma, (not to mean they do not care but do not let it seriously affect their health) and others become unable to let it go and suffer? This question can only be answered by more research into the ‘psyche’  and nervous system of the highly sensitive person because until we understand this phenomenon there will be no cure.

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Fibromyalgia: Hope for “Music Therapy”

Saturday, July 11th, 2009

“Music is the shorthand of emotion”, Leo Tolstoyadam

I have been reading the relatively new books on music and the brain and watching PBS documentaries recently on this very subject. In particular neuroscientist Daniel J. Levitin has produced excellent programs featuring such musicians as Sting whose brain has been examined through MRIs while playing and composing and even thinking about music. The results are astounding. This has led me to the question of whether or not music could be used for treatment of fibromyalgia, as in music therapy. The book and movie Awakenings and the further work of Oliver Sacks has made me reach the conclusion that music is a therapy for many neurological conditions. I watch that tiny infant in the picture  as she listens attentively to her uncle playing his guitar for her and know that she is mesmerized. She is calm and content.

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Fibromyalgia and Treatment

Saturday, June 13th, 2009

“What I am looking for is not out there; it is in me”, Helen Keller

The idea that fibromyalgia can be ‘cured’ through medications is erroneous. Drugs such as Neurontin or Lyrica can sometimes be effective to control the symptoms in some people with fibromyalgia some of the time. Is this really treatment or merely masking the symptoms?mind20and20the20brain

I will make this blog very short and suggest that the best way to treat fibromyalgia is  1) to remap the brain; 2)control the excess arousal of the nervous system; 3) unlearn what we have believed to be either a   biological/viral/bacterial cause of fibromyaliga; 4) stop the talk therapy that only brings up the same negative stories we have told ourselves over and over and continues to reactivate our nervous sytem; 5) stop looking for a ‘cure’ with medicines.

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Fibromyalgia and Multi-tasking: A woman’s nemesis?

Sunday, May 17th, 2009

“The first problem for all of us, men and women, is not to learn, but to unlearn”,full-catastrophe-living-jon-kabat-zinn-abridged-compact-discs-random-house-audiobooks Gloria Steinem

Women are often prone to say that we are experts on multi-tasking whereas men are more linear and less circular in their thinking. This of course suggests then, if this is accurate, that it is more difficult for women to ‘be in the moment’ as it is for men who are presumed to be more focussed on the main task at hand. I wonder therefore if this could contribute to the higher incidence of fibromyalgia in women than in men? The more tasks we are responsible for, the less we are focussed on one specific moment in time. Rather we are intent on handling not only the many present responsibilities, but that of other tasks in the future and the perceived needs of others. Added to this is the life long traumatic events of women’s lives as marginalized people.

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

Saturday, May 9th, 2009

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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Is Fibromyalgia a ‘Psychosomatic’ Disorder?

Sunday, April 12th, 2009

155643233x_01__sx140_sy225_sclzzzzzzz_” Trust one who has gone through it”, Virgil

Writing those words, in fact, even thinking about the title makes me feel uncomfortable! Who wants to be labeled as one whose pain is thought to be “JUST in your head” implying it is not real? But, before we go off into a tailspin about that specific demeaning-sounding word, I should begin by saying what I now believe psychosomatic to mean. It certainly does not suggest that those of us with fibromyalgia  are hysterics who malinger just to get attention. But, maybe, just maybe, our pain is caused by emotions that are unconsciously deep seated, trapped in past trauma and ARE in our head (brain).  Such emotions as anger, sadness, anxiety, fear, rage  and others can be kept in a closed segment of our minds without taking them out to examine and work with consciously. After all, pain perceptions come from our body’s nociceptors, funneled up to the brain. Psychosomatic does not mean the pain is not real, but that pain comes from the brain in the stored memories.

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Fibromyalgia: The pain is in the brain

Wednesday, March 25th, 2009

11463“Memory, the warder of the brain”, William Shakespeare

This is it!!! In my view this is the most significant in-sight I have had about the pain of fibromyalgia. It has been a long and interesting journey beginning with my book in which I laid the foundation about why women are more prone to developing FMS and my conclusion that it is actually caused by an over-aroused nervous system. However, while this was the first step, and the primary one, more has been revealed to me and I am very excited over the unlimited hope there could be for us all. I still don’t have all the answers and it may be that I am presenting information that is not quite accurate, but it has been a steep learning curve and requires much un-learning, which is said to be more difficult than learning. It all began with my physiotherapist, Nick Matheson who brought me to a path which I had never travelled down before, that is, to explore the relationship of pain and the brain, rather than looking simply at fibromyalgia as the result of a hyper-aroused nervous system. The journey down this path is not yet complete so I welcome comments from others who are more learned in this domain than I am.

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Are gay men more prone to fibromyalgia than heterosexual men?

Saturday, February 14th, 2009

untitled” I know that you cannot live on hope alone, but without it, life is not worth living”, Harvey Milk

The question I ask in the title is one that has intrigued me for several decades. Unfortunately, I don’t have an answer to this vexing issue. But, I would like to speculate about this for a wee bit as it is an unexplored area of research in the fibromyalgia domain.

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Fibromyalgia: hearing ‘science’ and being silenced

Saturday, January 31st, 2009

k7408” A little knowledge is a dangerous thing. So is a lot”, Albert Einstein

Having worked, taught and been involved in research for many years in a university, I am accoustomed to conferences and seminars where reviewing, applauding or critiquing the work of others is usual. Building upon good science and discarding that which seems wrong headed is part of the research process. It is how new knowledge is created. It is the true meaning of what constitutes good science. In short, open debate is encouraged.

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Fibromyalgia: Massage in Maui

Tuesday, December 30th, 2008

challenge-pain-patrick-wall-paperback-cover-art“Why do we pay for psychotherapy when massages cost half as much?” Jason Love

Aloha! Hauoli Makahiki! Happy New Year!

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Fibromyalgia, cold winter and holidays

Saturday, December 13th, 2008

” The last day of the old year was one of those bright, cold, dazzling winter days, which bombard us with their brilliancy, and command our admiration but never our love” , Lucy Maud Montgomery08-012

I am now on the west coast of Canada in beautiful British Columbia. Leaving Nova Scotia in the cold, I had hoped that Vancouver would be much warmer for my angry muscles. They just don’t like the bitterness of east coast winters. Alas! It is freezing cold here and it snowed, plus there is ice, making walking treacherous. Vancouver is close to the American city of Seattle so all you Canadian and American west coasters are suffering and I am in it with you too! Climate change and all the crazy weather patterns make for unpredictable weather, wherever we are. Added to this stress? The holidays, phew! Too much for those of us with fibromyalgia. Our emotional sensitivities are on high alert. The world has turned topsy turvy these last several years and it is difficult to be hopeful about the future. But, negative thoughts are not what we need as we approach ’09!

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Fibromyalgia and Buddhist Practice of ‘Tonglin’

Monday, December 1st, 2008

1577314417” There is a crack in everything, that’s how the light gets in”, Leonard Cohen

While I have read about and practiced (somewhat… and not diligently), mindfulness meditation, I have not often successfully been able to ‘let go’ of the pain messages from my brain, which seems to be from where anxiety and stress originates. Certianly there has been good success with mindfulness meditation for fibromyalgia (See the work of Jon Kabat-Zinn). Meditation is a life long undertaking and the practice itself is intended to be daily. Now I have been told of another way to facilitate bringing more peace into our lives and ‘letting go’. It is called Tonglin Practice. Although I am not a Buddhist, I do believe that there is much to be learned from Tonglin. It too appears to be another way to work with the breath and training the brain.

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On Being Parented and Parenting: Overcoming Past Experiences Through Understanding Pain of Fibromyalgia

Saturday, November 1st, 2008

“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people”, Thich Nhat Hanhbookcover-1

Since I am convinced that fibromyalgia is the result of a hyper-aroused nervous system, I wish I knew for certain if it is caused by early inadequate parenting by our parents and/or difficult childhood experiences in highly sensitive persons, or if we are born with highly sensitive nervous systems. I have my hunches, built upon numerous interviews and talks with many people (mostly women) over many years. In particular, my view is built upon my own experiences. Therefore, I will go out on a limb and suggest that we are not born with an easily aroused nervous system, but rather it slowly develops over many years as a result of our early socialization . Yet, even saying such a thing brings up the issue of children with fibromyalgia. Maybe, just maybe, they were born with the pre-disposition to this condition. What a dilemma! More questions than answers once again. Maybe it can be both nature and nurture. Parent blaming has become something of a modern day occupation. That is certainly not my intent. Who among us had perfect parents or are ourselves perfect parents?

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Fibromyalgia and Other Pains: Living with Anxiety and Apprehension

Friday, October 10th, 2008

400000000000000054575_s4“It’s not the load that breaks you down, it’s the way you carry it” , Lena Horne

HAPPY THANKSGIVING WEEK-END!

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Fibromyalgia: Suffering With The Itch You Can’t Scratch

Sunday, September 7th, 2008

147414671“Once it is understood that sufferings cannot be compared, then it is possible to speak of different sufferings in the same story, because there is no comparison”, Arthur W. Frank

Here it is… one awful day, living with the winds and rains of Hurricane Hanna and my brain tells my body something unusual is happening. The neurotransmitters are in overdrive. The itching has returned; it is everywhere on my body and nothing relieves it…not the Epsom Salts baths nor the Aveeno Anti-Itch lotion. I can’t get comfortable and my nerve endings are on fire. Only by constant massaging of my body parts do I get some degree of relief. When the hurricane passes us by I know the itching will subside until the next stressful event or a dramatic weather change.

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