August 27th, 2010
“Sometimes we stare so long at a door that is closing, that we see too late the one that is open”, Alexander Graham Bell
In so many ways we are fortunate to have access to valuable information which then allows us to take more control over our own lives. I can only speculate about what it must have been like for those who suffered from fibromyalgia for decades without a diagnosis, or recognizing what the causes were, or how to work with chronic pain and fatigue. Even worse would have been the cost of trying to find someone who could alleviate the worry. It would have been a time when communication with others who suffered from the same condition (that is, those of us with a highly sensitive personality trait, causing our fibromyalgia) would not have been as accessible.
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July 13th, 2010
” It is possible to move through the drama of our lives without believing so earnestly in the character that we play”, Pema Chodron
What is it that prevents many of us to change our thoughts, emotions, ways of being in the world even when we know that what we do, think or act upon is deleterious to our health? I have been a caregiver for most of my life and it has taken a toll on me in many ways. How do I learn to set boundaries and stick to them? What makes me think that I can mother the world? Isn’t that arrogance and self sacrificing? These are my thoughts on this humid summer day as I reflect upon what new crisis I will face with my parents in the coming days, particularly with an emotionally abusive father.
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June 10th, 2010
” Movement is life. Life is a process. Improve the quality of the process and you improve the quality of life itself”, Moshe Feldenkrais.
This slow movement practice was first written about in 1949 by Feldenkrais, who “was a cartographer, engineer and science officer with the British Admiralty”, The Globe and Mail, Amy Verner, writes (L4 Thursday, June 10,2010). Rather than experience surgery for a soccer injury he developed this rehabilitation technique, “using his own self awareness”. Very avant-guarde for his time. It was not until the 1960s that he began teaching others his techniques.
It is interesting that while yoga, for example, has received such public acclaim in the past several decades, Feldenkrais still evokes questions from people who have no idea what it is nor what is entailed with the movements. It seems many don’t even know how to pronounce the name. Lying on the floor, gentle movements are employed that are slow, and seem sometimes to be excruciating so, as one becomes in tune with the process of moving.
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June 5th, 2010
“Fear is that little darkroom where negatives are developed”, Michael Pritchard
This week has been a bad one. The combination of torn buttocks muscles, reactivated/re-injured herniated disk, bursitis, trapped nerve , and fibromyalgia have depleted me. I cannot walk without tremendous pain. I had to go to my doctor ’s office in a wheelchair, a humbling experience. I began to wonder if the pain would ever leave and more importantly, which of my above structural issues caused this unusual (for me) dis-ability. It seemed important to know…which one is the cause of this pain?
The most wonderful experience of the week so far was meeting the resident physician in my own doctor’s office (who is himself a very caring, thoughtful, knowledgeable physician). This resident in Family Medicine is both a chiropractor and a medical doctor. How fortunate for me. Given the knowledge that chiropractors would have in regard to my own muscle/bone issues, I was happily surprised that I had an expert in regard to the herniated disk, which worried me the most. I spent an hour in the office with both he and my family doctor, talking me through my fears. I left greatly relieved although I knew I had a long struggle ahead of me, particularly in regard to managing fears of danger that comes with pain. How lucky I am to live in such a great country with this wonderful health care system. How wonderful to find a combination of disciplines within the traditional medical perspective of physicians, particularly with my doctor-phobia.
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May 29th, 2010
“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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May 20th, 2010
“Deep, unspeakable suffering may well be called a baptism, a regeneration, the initiation into a new state”, George Eliot
I have used the above title terms as those which haunt me on a daily basis. There can be little doubt that those of us with fibromyalgia suffer both physical and mental anguish on a daily basis. Which comes first is difficult to say with certainty. Most of us are high functioning people who have been broad-sided by pain and fatigue which causes the suffering and secondarily (my view) we suffer from the psychological after effects of living with the peculiar symptoms which plague us. There are many who believe that those with fibromyalgia have psychological problems that cause the fibromyalgia. My view is the opposite : I believe we have very active lives and then we are bomb-barded by the pain and fatigue which causes emotional uncertainty. However, it is obvious to me that we have many similar personality characteristics and our life stories usually reveal that we are highly sensitive people, many of us with damaged childhood experiences. I am somewhat uneasy about using the term ’suffering’ as it reminds me of my early Catholic upbringing about ’suffering up our pain’ to gain indulgences for heaven bound. Suffering mentally or physically (and I don’t know how to separate one from the other) is not a happy uplifting experience, nor in my view, should it be viewed as something that will help us in a presumed afterlife. With fibromyalgia it involves daily challenges and struggles.
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April 19th, 2010
” Yoga teaches us to cure what need not be endured and endure what cannot be cured”, B.K.S.Iyengar
Many years ago I regularly attended Iyengar Yoga classes with a very talented Halifax instructor, David Thomas.
I believe that it helped me keep up with regular activities and my professional career. For the past two decades I have not done yoga even though I knew that the benefits would sustain me as I grew older. I lacked discipline and the pain and fatigue has increased considerably since then. I have very little flexibility.
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March 16th, 2010
” My friend…care for your psyche…know thyself, for once we know ourselves, we may learn how to care for ourselves”, Socrates
Fibromyalgia does not allow for any kind of scientific tests to aid in making the diagnosis of the syndrome. It is not a disease, but a broad spectrum of ’symptoms’ which appear to be somewhat universal, that is, primarily pain, fatigue, sleeplessness and often depression.
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March 15th, 2010
” At the museum a troubled woman destroys a sand painting meticulously created over days by Tibetan monks. The monks are not disturbed. The work is meditation. They simply begin again”, Susan Griffin
I have recently had the honour of watching Losang Samten, a Tibetan scholar, develop (over days) and then begin the dismantling (in a few minutes) of a mandala. It was awe inspiring. 
It was created from sand with different colours to represent the symbolism of the mandala. This one represents the Wheel of Life with a message about how to overcome individual sufferings.
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March 12th, 2010
“If you can anchor yourself to a ship of tranquility, you won’t be tossed about by the waves of stimulation”, Ted Zeff
I recently asked my spouse what lessons he learned from his father. His reply was how to ‘pace’ himself; to be cautious and not overly frenetic. His father lived to be 90, was a factory worker and a musician and helped raise five children. He was a calm man, did not complain about aches or pains, was easy going and like his son, my partner of many years, a relaxed man. He was like this in spite of the stimulation of five children and two jobs. It was a pleasure to be around him. He moved about slowly, pacing himself. Neither he, nor his son, have , nor had fibromyalgia. That goes without saying.
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February 20th, 2010
“Nothing in life is to be feared. It is only to be understood”, Marie Curie
I recently heard a presentation from a distinguished scientist speaking about fibromyalgia. The audience seemed to be mostly comprised of people with fibromyalgia. He referred to fibromyalgia as a ‘terrible disease’. My immediate reaction was not very positive as I don’t believe that fibromyalgia is a disease, but rather a syndrome, yet he also referred to pain as a disease, which also surprised me. Language is so important to our understanding of this condition and I prefer to use the word dis-ease. If we feed into this idea of a disease, more and more researchers will continue to search for the elusive and non existent virus or bacteria or continue the search for hormonal issues, without an emphasis on psycho-social causation ! Furthermore, there was much in the presentation on what the brain looks like after prolonged pain, but it seems to me that this is a chicken and egg dilemma. I would prefer that the focus be on what caused these changes rather than to assume that people with fibromyalgia are born with genetic defects. However, the question about whether or not we are born with unusual brain wiring or we acquire it from our early socialization is one which may never be answered.
The term neuroplasticity was only briefly mentioned once.
I would have liked to know his thoughts about whether or not a person could acquire this brain defect in wiring because of socio-psychological issues. He emphasized that fear was a big factor in fibromyalgia, a point that I agree with emphatically. If this is so and the ‘fight or flight’ amygdala reaction of the brain is in constant turmoil, it seems to me that this is psycho-socially induced. But of course, once again, I am only speculating.
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February 7th, 2010
“One of the problems in understanding sensory issues is that sensory sensitivities are very variable, among individuals and within the same individual”, Temple Grandin
I have recently heard interviews on NPR with Dr.Temple Grandin, one of the leading experts in autism. Unfortunately I don’t have HBO so did not watch the movie of her life on February 6th. I have though read The Way I See It and been impressed with her theoretical analysis of Autism, which she says has many of the same characteristics as ADHD and even Dyslexia and other learning disabilities. I am astounded by the many similarities between Autism and Fibromyalgia. There appear to be so many: difficulty with sensory overload, fear as the main emotion, problems with information processing (what we with Fibromyalgia call ‘brain fog’), sensory over-stimulation, problems with too much noise, some sounds, smells and textures can bring about anxiety or even panic attacks…the list seems endless. I have taken the liberty of using some of the exact words of Dr Grandin as they reflect the kinds of words I would use (and have) to describe Fibromyalgia. It is her view that there is a deficit in brain wiring in Autism. It is highly likely that this is the cause of Fibromyalgia as well. She speaks frequently of an over aroused nervous system, as do most researchers nowadays when describing Fibromyalgia.
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January 31st, 2010
” The only thing better than singing is more singing”, Ella Fitzgerald
The singer/songwriter Shelly Quarmby has just released a six song EP entitled Change; the proceeds of one of the tracks will be donated to the Fibromyalgia Association of the United Kingdom (FMA UK). 
Her own struggles with fibromyalgia inspired her to make this contribution. Shelly has a Canadian connection, as she lived in Toronto while she recorded her EP there. She has agreed to answer some questions for us regarding both her career and living with fibromyalgia. She is available for viewing on itunes and her music is soothing to the ear! Her website is: www.shellyquarmby.com/shop.html and I urge those of you who need to be uplifted to buy her music!
Lives that are afflicted by this invisible dis-ease are often spent in social isolation, but the stories of those who carry on with dignity are numerous. Shelly is one such woman. My first questions to you Shelly: When were you diagnosed with fibromyalgia? Perhaps you would be willing to tell us something about your early life and what you think precipitated this syndrome?
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January 28th, 2010
“To be hopeful in bad times is not just foolishly romantic. It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness…”, Howard Zinn
The death of Howard Zinn yesterday is a sad loss. He has had a profound impact upon me. I had the privilege of hearing him speak at St. Mary’s University, Halifax, almost one decade ago. Since then I have heard him recently on Bill Moyer’s PBS. One of the great American social activists, historian and playwright, he has been a beacon of hope in a time of great despair. 
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January 16th, 2010
” It always seems impossible until it’s done”, Nelson Mandela
I have recently heard Sirena Dufault give a presentation of her 800 mile hike from Utah to the US -Mexico border.
The two years she spent hiking the Arizona trails were intended to raise awareness about fibromyalgia. Hiking has become her passion. You can see her website at www.aztrail4fms.org.
Sirena was diagnosed with fibromyalgia in 1998 after being hit by a car and bedridden for many weeks, unable to do very much physical activity. Two years ago she began slowly walking, gradually increasing her activity until she decided to actually begin hiking. The story she tells is one of courage and perseverance. I have asked her if she would reply to my questions in an interview format and she has agreed.
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January 8th, 2010
“Limitations only go so far”, Robert M.Hensel
Hearing loss appears to be common after a prolonged history of fibromyalgia.
It seems as though sensorineural hearing loss, that is, loss that is due to damage to the inner ear auditory nerve pathways to the brain, occurs more frequently in fibromyalgia than has been reported. Not hearing lovely sounds like that of this wonderful children’s group can have devastating effects on a person’s morale as with most deaf people, but added to which is the physical pain of fibromyalgia. It stands to reason that the tension and anxiety that goes hand and hand with fibromyalgia would result in jaw clenching, teeth grinding and tightened neck muscles, thereby affecting, among other muscles and nerves, the 7th cranial nerve which supplies all the muscles of the face .
Many have written to ask me if TMJ (Temporomandibular Disorder) is common with fibromyalgia. TMJ results in the joint (that slides and rotates just in front of the ear) twisting during opening, closing or side motion movements. The challenges that occur can be sensitive teeth (no doubt why so many of us have unexplained tooth pain) and earaches. The jaw muscles with myofascial discomfort refer the pain to the teeth and ears, and can even cause headaches.
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December 30th, 2009
” To be seventy years young is sometimes far more cheerful and hopeful than to be forty years old”, Oliver Wendell Holmes
As we age each new year brings hope of change in a positive direction. Less pain, less fatigue, better quality sleep are the things I wish for. The new resolutions: try not to overdo like I always do on days when a flare-up has subsided; daily gentle exercises if only for a few minutes off and on each day; maybe take a music appreciation class (not like the class I tried to take to relearn how to speak French and had to attend class all day from 8 a.m. till 4 p.m conjugating verbs, ugh! The teachers were terrific, the program lovely but I had brain fog. After one week I quit, exhausted).
My new year’s resolution is to practice meditation more regularly; try new creative things but only gradually, not like I did with the quilting (I had never quilted before and by hand I sewed 4 quilts since Easter, without a sewing machine, now I suffer from carpal tunnel syndrome!). That seems like enough for me right now, the quilting (notice the Betty Boop quilt which is very uplifting!)and the French classes did me in this year.
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December 26th, 2009
“Caring is pivotal to keeping the human enterprise going, yet its function is invisible in the organization of our daily lives”, Sheila Neysmith
This is my 50th blog and I have never yet discussed male caregivers! In my book I discussed with the women living with fibromyalgia the issues regarding the people who supported them (or in many cases, those who did not provide support or understand what it meant to be living with fibromyalgia) . Their answers often surprised me. I am one of the fortunate ones who has a husband with a caregiving nature. 
He is my biggest supporter and without him I don’t know how I would survive the pain and fatigue. I generally feel guilty about the limitations of my life and how they have impacted on him. I have long wanted to write about the caregiving strain of coping with people who have invisible dis-eases while the work of the carer is itself often invisible. It can’t be easy since those of us with fibromyalgia usually look healthy, and even the caregiver must wonder at times if we really are suffering as much as we say we are. The irony of all this is that women with fibromyalgia are usually in this state of hyperarousal of the nervous system because they themselves were once super-carers of others! Furthermore, the guilt we experience because others are taking care of many of our needs is a conundrum we are forced to live with.
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December 14th, 2009
“Music expresses that which cannot be said and on which it is impossible to be silent”, Victor Hugo
Tamara Cimmerian has just released a new album about overcoming adversity and living with fibromyalgia. This will be a great way to raise awareness about our condition. It is a KatZens production called Overcome
. Tamara will be writing comments on this blog about herself (and her fibromyalgia) and the best news is that 1/3 of her proceeds will go to the American National Fibromyalgia Association. Although I am Canadian I support Tamara’s generosity towards her National Association and know that any research will be of great interest to all of us in any country in the world. Congratulations, Tamara. Write as much as you wish on this blog and I will respond and ask you more questions. Others are invited to do the same.
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