Women and Fibromyalgia

Fibromyalgia, hope and gratitude

December 27th, 2011

“Hope is the thing with feathers that perches in the soul, and sings the tunes without words, and never stops at all”, Emily Dickinson

I have been reading the several contrary views on the issue of gratitude, that is, should a person feel gratitude for what is good in one’s life or does that turn into complacency? If I express gratitude for having an adequate income, for example, does that preclude me from understanding that being financially stable is everyone’s right and should be fought for just as the ‘occupiers’ are doing? So, in the list of my gratitudes I do not express gratitude that I have a home, supportive spouse and enough money to seek help while living with fibromyalgia. Instead I feel pain that fellow suffers are not given those same privileges. Yet, many researchers suggest that when one feels gratitude hope and a sense of well being should accompany that emotion. Still, I feel uncomfortable saying I am gratitude for what every human being should have access to…good medical care, healthy food, housing, clean water, and an income that sustains comfortable living. But, I do feel hopeful that the only big 3 of fibromyalgia treatment: meditation, light exercise/movement and diet will change many people’s lives, so for that I am indeed grateful.

Read the rest of this entry »

Fibromyalgia and happiness

December 4th, 2011

“The many different categories of happiness and suffering can be divided broadly into physical pleasure and suffering; and mental pleasure and suffering. The latter, the experiences of the mind, are more important than those of the body”, The Dalai Lama

The book by Dr.Rick Hansen exemplifies all that I have written about in the past year or two regarding how to change one’s brain to bring about happiness while living with the challenge of fibromyalgia. His book (Buddha’s Brain) exemplifies how one can change the brain and bring about a sense of peace, something all of us with fibromyalgia are struggling with on a daily basis. With peace comes a calm happiness.

Read the rest of this entry »

Fibromyalgia and Sounds/Noises: Misophonia

October 9th, 2011

“One of the greatest sounds of them all-and to me it is a sound-is utter,complete silence“, Andre Kostelanetz

There is a new (at least to me) term called “misophonia” (Wednesday, September 7, 2001 , Life section, The Globe and Mail) in which sounds can cause severe reactions in people ( article written by Joyce Cohen). It has occurred to me that many of us with fibromyalgia experience extreme discomfort over certain sounds. For me it is the clicking of heels on pavement, a dog slurping its food, chewing loudly by others, humming of a motor or heating system, a baby crying, boom boxes…the list is endless. Even more alarming is an unexpected loud noise, such as a motorcycle or firecrackers. I realize that most people can find many of these sounds alarming, but for the person with misophonia, the auditory nervous system is in overdrive. Cohen writes about one 19 year old woman who becomes distressed with some specific sounds enough to “make her chest tighten and her heart pound”. I believe that those of us with a hyper-aroused nervous system suffer universally from anxiety and not only do we experience a visceral response to violence , but to anything that startles or is grating to the ears and can raise our anxiety level.

Read the rest of this entry »

Fibromyalgia and night time traumas

September 28th, 2011

“In my age, as in my youth, night brings me many a deep remorse. I realize that from the cradle up I have been like the rest of the race-never quite sane in the night”, Mark Twain

My father died at 93 last week. My mother, also 93, is in a state of extreme shock and needing a great deal of attention. A very good friend has been diagnosed with lung cancer. My night terrors have reared their ugly head. I remember the bad times of my childhood. It would be easy for me to sink down into despair and these times then bring on those periods of flareups of fibromyalgia and fearful sleep that has plagued me all my life.

Read the rest of this entry »

Hope

August 23rd, 2011

“My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world” , Jack Layton

Read the rest of this entry »

Linking together the causes of fibromyalgia

July 26th, 2011

“The amygdala in the emotional center sees and hears everything that occurs to us instantaneously and is the trigger point for the fight or flight response “, Daniel Goleman.

Just as I figured several years ago…it wouldn’t take long before others would finally give up searching for viral/bacterial/hormonal or other CAUSES for fibromyalgia and agree with my theory that this demon is caused by a hyper-aroused nervous system in highly sensitive persons! My book was the first to write about that and now I find that in the magazine Psychology Today , August 2011, an article written by Andrea Bartz, suggests that as well! I have laid out these ideas as: fibromyalgia= highly sensitive persons who have had acute or chronic trauma in their lives (psychological and/or physical) have developed a hyper-aroused nervous system, and an amygdala that is hyper-responsive to fight or flight tendencies. This is called central sensitization, that is being hypersensitive to sounds, stress, weather changes, light and many other conditions that can affect the nervous system and which develops slowly over time.

Read the rest of this entry »

Fibromyalgia and Violence

July 12th, 2011

” Nonviolence means avoiding not only external physical violence but also internal violence of spirit” , Martin Luther King, Jr.

Violence can be defined in many ways. Anger that is at its peak: it can be in the forms of shouting, yelling, hitting, sexual and/ or physical and /or emotional abuse, throwing things, or any other way of inducing fear and trauma in others. It takes many forms. Racism, sexism, homophobia, all the social injustices are a form of violence. The TV gives us shots of Afghanistan, Iraq, Libya in which war violence is perpetuated . The media and movies fill our psyches with violence, and daily we face it personally in our own lives. It is not a kind, gentle world. Those of us with fibromyalgia have highly sensitive natures (which I have written about extensively) and we absorb this violence regularly, to the detriment of our hyper aroused nervous systems.

Read the rest of this entry »

Fibromyalgia and the sugar addiction

June 3rd, 2011

“If only a small fraction of what is already known about the effects of sugar were to be revealed in relation to any other material used as a food additive, that material would promptly be banned” , John Yudkin

This is my 79th post on fibromyalgia and/or chronic fatigue and I often wonder what I will write about next. I recently read an interview with Woody Allen who said he walks around and stories come to him. The same seems to apply to me. This time it is about sharing a dark, deep secret.

Read the rest of this entry »

Fibromyalgia and pain management strategies

May 18th, 2011

” These are exciting and challenging times for the manual therapy professions. I believe that the pain science world is handing extremely valuable information to clinicians. We now have a greater understanding of the behaviour of pain states and we are becoming aware of the molecular targets of manual therapy” , David S. Butler

Dear readers, I apologize for not writing a blog last month, but I have been sick with a cold that would not abate. Nonetheless, as usual I have still been pondering about the many issues that plague those of us with this demon that can be so debilitating. I search constantly for strategies that could be effective for pain management and my readings and searches often take me to places I had not been before. But no matter where I research I come back to pain and the brain and evidence/research based strategies. I will never find the cure for my own chronic pain. It is a question of what practices work somewhat and which ones would do more harm. Most importantly how I can avoid flare-ups and not to identify myself as my pain to the point where I don’t move coming from a place of fear.

Read the rest of this entry »

Fibromyalgia: Pseudo-science and Woo Woo

March 12th, 2011

“Science is like an inoculation against charlatans who would have you believe whatever it is they tell you”, Neil de Grasse Tyson

There are numerous claims made by those who practice or have beliefs in woo woo (irrational ideas based upon lack of scientific evidence) about various concoctions, herbs, homeopathic solutions (sugar pills) and other types of unscientific, unproven remedies or ‘therapies’ that will cure fibromyalgia. I admit to being biased towards that which has been tested scientifically, in spite of the fact that there can be horrendous mistakes made within the realm of science. However, there are two choices: ‘scientific medicine which is evidence based’ or ‘pseudo-science’ and not, in my view, ‘complementary/alternative medicine’ which has not been validated with rigour. But, I have not always been so discerning.

Read the rest of this entry »

Fibromyalgia: Accentuate the Positive

February 15th, 2011

“We don’t stop playing because we grow old; we grow old because we stop playing”, George Bernard Shaw

Lately I have been reading about play and how important it is to adult life, and not just for children. Dr. Stuart Brown, a leading expert on play and the brain says that humour, games,roughhousing, flirtation and fantasy make us happy, smart adults and even make us smarter at any age. He points out that play fires up the cerebellum and a life without it leads to depression. Not only does play have a biological place in our bodies as shown by an fMRI, but it enhances intelligence. Dr. Brown is a pioneer in play research and is somewhat unique in this field of play and the adult.

Read the rest of this entry »

Fibromyalgia, Music and Creativity

January 19th, 2011

“I think I should have no other mortal wants, if I could always have plenty of music. It seems to infuse strength into my limbs and ideas into my brain. Life seems to go on without effort, when I am filled with music”, George Eliot

One aspect of changing the brain ( as we hope to do with fibromyalgia) is to allow the creativity part of our brain to flourish. Dr. Charles Limb, physician and musician has presented much of his research on just this topic! See his exciting new video on TED:

Read the rest of this entry »

Teach a human to fish

January 16th, 2011

Teach a human to fish.

While this article does not deal specifically with fibromyalgia, I thought it would be extremely useful for the readership.

This may be relevant for those of us who have spent hundreds of dollars on complementary/alternative medicine with little (if any) results, and for those of us who have been continually frustrated with health care professionals who cannot help us find answers to questions about invisible, non-life threatening conditions! The answers seem to lie within our own selves.

Fibromyalgia and major life transitions

January 14th, 2011

“When you’re finished changing, you’re finished”, Benjamin Franklin

It really is all about the brain and how new pathways can become established and old ones can be paths less travelled. So many report their fibromyalgia began with an accident, surgery or another episodic event that was physically shocking to the nervous system. Some call this ‘primary fibromyalgia’. However, fewer report that major life changes like menstruation, graduations, marriages, parenthood, divorces, job losses and changes, loss of dear ones, widowhood, moves, menopause, retirement, even significant birthdays, among many others, can be equally as traumatic to the nervous system. Like long term stress and abuse, generally these are slower processes for fibromyalgia to develop and are often referred to as ‘secondary’ fibromyalgia. The brain needing to adjust to a new life circumstance usually does not do this very quickly. Uncertainty about the new transition develops and for the person with fibromyalgia or prone to it, brings about hyper-arousal of the nervous system, coming from a place of fear. This is not about the separation of mind/body, but rather to point out that while an assault to the body can bring about fibromyalgia for those who are predisposed to it, so too can a crisis in transitioning from one aspect of life to another. It’s about seeing the new with some degree of promise and hope. It’s about seeing the rainbow somewhere on the horizon, even if there is grief, pain and sadness associated with the change.

It might be a good exercise for us to record all the major transitions we have experienced during our life times and how we processed them in our minds. Some were with joy and hope while others were with fear, grief and panic. In fact, many were felt with mixed emotions. But understanding how our brain led us down a certain path can result in interesting insights! I strongly encourage the readership to go to Heart Sisters of Carolyn Thomas’ site because although it is not about fibromyalgia, the blogs and comments are awesome as they focus on positive life transition after a traumatic event.

Fibromyalgia and ‘Highly Sensitive Persons’: “Orchid Children”

January 1st, 2011

“The flourishing orchid spreads out its fragrance”, Confucius

In the January 1, 2011 of The Globe and Mail A4 an article has resonated with me that is tied in to the issues I wrote about in my book. Based upon the work of Elaine Aron and The Highly Sensitive Person I developed a theory about the cause of fibromyalgia. In my view this condition resonates with those of us with an easily aroused nervous system and we are those ’highly sensitive persons’. Nothing I have read to date nor speculated about has changed my opinion, in fact the opposite has occurred. I am now more convinced from learning more and more regarding the revolutionary new brain research and my own observations from decades of living with fibromyalgia.

The article written by Anne McIlroy is entitled How to raise an ‘orchid child’ to blossom. I love the new term ‘orchid child’ as it is indicative of the sensitive child who is like a hot house plant. This term was described to me by one of the women I interviewed in the book as she described her younger years, and how her mother had used that language to describe her. Aron “now calls the trait sensory-processing sensitivity “, writes McIlroy. I have read this article with great interest and remembering my own childhood I am listing here certain criteria for the orchid child, all of which describe me as a child. I invite others to see the extent to which they too also describe themselves in this way. Did you/do you: “Notice the slightest unusual odour? Prefer quiet play? Complain about scratching clothing, tags in clothes or seams in socks? Startle easily? Perform best when strangers aren’t around? Feel things deeply? Notice when others are in distress? Have trouble falling asleep after an exciting day? “. Are you: “Sensitive to Pain? A perfectionist? Bothered by noisy places? Without doubt these are the ways in which most people with fibromyalgia would describe themselves. Were those of us with fibromyalgia orchid children? Often used as a symbol for spring and associated with the beauty of women, an orchid is a lovely image to embrace. It has been written that an orchid is a “flower of noble character”. This image is of a fragile plant that needs just the exact amount of light and nourishment in order to blossom, but not wilt.

Read the rest of this entry »

Fibromyalgia and emotions

December 22nd, 2010

“Nothing vivifies, and nothing kills, like emotions”, Joseph Roux

It’s almost the end of December already and I missed writing a blog in November. Seems I was trying to recover from the many crises (or at least perceived crises) in my life. The physiotherapist (Nick) said my nervous system was “completely exhausted” and to rest. For the past few weeks things have finally quieted down and I am having Feldenkrais movement treatments/activities (I am somewhat certain that Tai Chi would be equally as effective, or any kind of movement) to help revitalize me somewhat. The fatigue is slowly dissipating and with it some of the pain from all the hyperactivity and intense stressful emotions in my life. I am back on my recumbent bike a couple of times a week for about 20 minutes a day now (again!).

As I write this I watch little light snow flakes outside; there’s a fire in the fireplace; I have just spent 20 minutes meditating and I am at peace with my heating pad on my shoulders and hot tea to comfort me. The winter skylight is incredible at dusk. Now that we have had Solstice the days will be getting longer. picture of Rob's flowers and snow from our back yard 002 If only there were more days like this, but of course, crises happen…stuff happens. I can’t stop the world. I am though working on focused practices such as mild exercise and meditation which is what my emotional roller coaster craves and my brain ( that darn amygdala!) has a difficult time understanding. My brain wants to go that well worn path to emotional chaos instead of the new calming pathways I am trying to cultivate. The stresses that many of us experience during the festive season create in us emotions that can make us sick, or conversely could make us well.

Read the rest of this entry »

Fibromyalgia and a joyful brain!

October 27th, 2010

“When you change the way you think, you can change the way you feel“, David D. Burns

I have been pondering of late how I can change the nature of this website from that which focusses on symptoms and instead place more emphasis on neuroplasticity in action. Now as I write this 70th blog, for the time being at least, I want to write about living the experience of actively working on changing my brain, rather than espousing the rhetoric. After all these years I am finally fed up with defining myself, to myself, that I am “fibromyalgia”. I am bored with it. I have even become fed up with the word. What kind of a label have I given myself? It has become self fulfilling. I expect pain, fatigue and flare-ups. My brain, sleepy at times, crazy at others, jumps to the old pathways and keeps up the usual harangue. “Can’t do this, it will cause a flare-up”. “Too much excitement, I will be in pain tomorrow”. ” I shouldn’t do this long walk, I will be in a state of fatigue all week”. My brain eagerly accepts these depressing messages and goes down the well worn path. Strangely, it is so well travelled that it actually feels comfortable. New journeys into unfamiliar places in my brain means taking risks and cutting through the brush. So, why haven’t I taken this road before? Why do I have a mild flirtation with going a new route while trudging back into the boring, old worn out path? I have crept onto the unexplored by occasionally meditating, taking on a new, creative, repetitious craft (quilting), trying to remember how important movement is to changing the brain, but not in any disciplined way. I have not actively sought out joy in my life. When it happens I am thrilled but suspicious! The brain has amazing capacities and neural pathways, so why not bring the pathway to joy, rather than depression and anxiety? david burns

Read the rest of this entry »

Fibromyalgia and Aging

October 7th, 2010

“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.

Read the rest of this entry »

Fibromyalgia and Setting Limits/Boundaries

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.

Read the rest of this entry »

Fibromyalgia and Caregiving Strain

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.

Read the rest of this entry »