Women and Fibromyalgia - Part 3

Male caregiving for the spouse with fibromyalgia

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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A new album for those of us with fibromyalgia!

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. overcome-small

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

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

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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Fibromyalgia: Numbness, Tingling, Pins and Needles

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. 0060723122 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!

Defining fibromyalgia

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

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

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 Medical Marijuana

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) marijuana-leaf1 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.

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Fibromyalgia: Hope for “Music Therapy”

July 11th, 2009

“Music is the shorthand of emotion”, Leo Tolstoy adam

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

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?

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”

May 9th, 2009

“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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Fibromyalgia and Menopause: Our Bodies Ourselves

May 2nd, 2009

97807432748761 I have just been nominated as a Women’s Health Hero from the Our Body Ourselves collective by a former student. I am so honored by this nomination. The series of books written by this collective is superb. I wrote (with two colleagues) a chapter for their book on menopause which is a topic near and dear to my heart as fibromyalgia seems to speed up at mid-life. I also have a chapter in my own book on fibromyalgia regarding menopause. If you are interested in nominating me (or some of the other wonderful women) please visit their site as soon as possible www.ourbodiesourselves.org/heroes.asp Nominations cease May 8th/09! Just reading about those lovely women is inspiring.

May 11,2009

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Is Fibromyalgia a ‘Psychosomatic’ Disorder?

April 12th, 2009

” 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

March 25th, 2009

“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?

February 14th, 2009

” 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

January 31st, 2009

” 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

December 30th, 2008

“Why do we pay for psychotherapy when massages cost half as much?” Jason Love

Aloha! Hauoli Makahiki! Happy New Year!

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