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.
Read the rest of this entry »
1 Comment »
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.
Read the rest of this entry »
10 Comments »
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.
Read the rest of this entry »
4 Comments »
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?
6 Comments »
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. 
Read the rest of this entry »
1 Comment »
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.
Read the rest of this entry »
2 Comments »
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. 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.
Read the rest of this entry »
2 Comments »
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 quilitng and the French classes did me in this year.
Read the rest of this entry »
6 Comments »
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.
Read the rest of this entry »
6 Comments »
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.
6 Comments »
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!
Read the rest of this entry »
No Comments »
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. 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.
Read the rest of this entry »
6 Comments »
November 7th, 2009
” The world is full of suffering, it is also full of overcoming it”, Helen Keller
A condition called paresthesia results in numbness, tingling and pins and needles in the limbs, due to disturbances in the nerve pathways. For me it is much worse at night and in my arms, rather than the legs. However, I also have many twitiching new sensations in my legs as well, but the arms right now are worse. The result is that I wake up several times during the night when an arm is ‘asleep’, numb with cold and actually hurting. When I am up for awhile moving about the feeling comes back in my arm and I fall back asleep on the other side only to wake up an hour or two later with it on the other side. My sleep is very disturbed by this relatively new symptom. But, then I have developed pains in the knees this summer, another new symptom. Just as I think I have had them all, something new crops up. How discouraging. Like other sufferers of pain I live in fear that this new symptom will not disappear.
While I am a great fan of Harriet Lerner it is this particular book which helps me the most.
I am very sleep deprived of late yet I dread going to bed knowing that a few hours later I will awaken with hurting arms. I do all the suggested right things: I take cal/mag supplements, a B12 supplement under my tongue, and rub my arms with a camphor cream. I take an epsom salts bath before going to bed and apply heat and/or cold to my neck during the day. I put a small pillow under my neck to support the area that is not on a pillow and I have the right pillow for my upper body. I try to discipline myself to meditate each day and I also do some gentle movements of my arms often during the day. One particular stretch which does help somewhat is standing against the wall with my arms outstretched against the wall and my head against the surface with gaze forward but not jutting my chin outward, for one minute. I try not to struggle against the pain. QiGong is supposed to be good for this condition. Yet, in spite of all my good intentions the demon usually persists. It isn’t often I write a blog with such whining but to-day after very little sleep and cold, wet, snowy weather (gasp! it isn’t even officially winter yet!), I feel entitled. Forgive me folks! The women in my book speak often about feeling guilty about complaining, but since our symptoms are so diverse and frequent, it isn’t easy to ignore them. So this is a blog about my newest struggle!
4 Comments »
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.
Read the rest of this entry »
2 Comments »
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.
Read the rest of this entry »
7 Comments »
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.
Read the rest of this entry »
2 Comments »
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. 
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.
Read the rest of this entry »
No Comments »
August 8th, 2009
“Make the most of the hemp seed, sow it everywhere”, George Washington
I’m not very humble when I say that I believe my book will one day be a steppingstone toward a greater understanding about why certain types of people are more prone to fibromyalgia. Furthermore, I haven’t read any books which outline all of the various theories regarding the cause of this condition such as mine has. Hearing the voices of others who suffer daily can help the reader know that s/he is not alone in the day- to- day struggles. I give details of various treatment modalities and I believe the book to be a valuable source of information about not only cause but what can be helpful in living with the daily challenges of this dis-ease. Yet, surprisingly, in spite of this comprehensive review and analysis I had never explored whether or not marijuana (Cannibas Sativa)
as prescribed by a physician could be useful for pain control. In fact, even now I have mixed feelings about the issues surrounding fibromyalgia and marijuana use even though I believe that cannibas is very helpful for several other medical conditions, in particular following chemotherapy.
In the February,2008 issue of Journal of Pain it was reported that 40 patients were part of a study at the University of Manitoba in which a control and an experimental group were given either a placebo or Nabilone, (brand name Cesamet) a pain drug based on marijuana’s active ingredient. The results indicated that after one month there was significantly less pain and a better quality of life for those who took Nabilone.
Read the rest of this entry »
38 Comments »
July 11th, 2009
“Music is the shorthand of emotion”, Leo Tolstoy
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.
Read the rest of this entry »
12 Comments »
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?
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.
Read the rest of this entry »
6 Comments »
