Fibromyalgia: The Mark of Shame?

June 9th, 2013

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”, Maya Angelou

On June 3rd I heard a documentary on CBC radio talking about the mark of shame, the culture of shame and how it makes one feel. There is so much about the visibilities of women’s bodies that cause us to hide  perceived imperfections, in particular the dyeing of our hair so as not to look old, plastic surgery to hide our wrinkles, over use of cosmetics, whitening of our teeth, even the marketing of products to enhance the colour of vaginas!  We can never measure up to the standards set for us by the big businesses of the  multi national corporations  who prey on our insecurities. The cosmetic industry is constantly thinking up new ways to make us feel insecure and shameful if we do not keep up appearances of a youthful woman. We must always be thought of as sexually desirable dictated by our outward appearance. That isn’t to say that I am morally judging those who use whatever means they can to feel good about their outward appearance. Rather, it is meant to point out that we are often prone to hide the fact from ourselves that we cannot stay or look like we are in our 20s forever.While none of this understanding of women’s attempt to look like the Hollywood definition of beauty was any surprise  or new to me, having taught in a women’s studies program for many years, nonetheless it got me to thinking about  conditions that are invisible and about which we have shame because we cannot measure up to standards of health, for example, with fibromyalgia.

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Medications, Medications and more Medications: Fibromyalgia Medicalized

May 27th, 2013

“Doctors are men who prescribe medicine of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing”,Voltaire

Those of us with chronic conditions are constantly seeking relief from the myriad of symptoms that make our lives very challenging. Pain, fatigue, lack of physical abilities, sleep disturbances, depression, rashes, to name but a few of the minor to serious struggles with which we are faced lead us to desperately wanting relief in the form of medications. Living with any one of the daily distressing symptoms affects our quality of life and it is little wonder that we seek help in the form of chemicals to help us get through the day. Many, in fact, are essential to our conditions without which we could not survive. Others are prescribed from the sheer frustration of physicians who want to help but medical answers to many perplexing conditions are not yet available to them. Such is the case with fibromyalgia. What to do with a patient who has chronic pain but to prescribe a pain medication, that may or may not help? If the patient cannot sleep there is a solution: sleep medication. Depression and anxiety? Medications for altering moods.The list of medications for all sorts of conditions is limitless. Pharmaceutical companies are big booming businesses whose profits know no bounds.Physicians could not possibly remember the vast array of information that the drug reps tell them about their efficacy or that they learn about on line. More to the point ‘new’ diseases and conditions are constantly being ’discovered’ for which new drugs must be invented. Read : The Medicalization of Everyday Life by Thomas Szasz, a psychiatrist, whose work in mental illness was compulsory reading for me as a medical sociology student in graduate school, many years ago.

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Mindfulness Meditation/ Fibromyalgia/Anxiety/Depression

May 5th, 2013

“If you are cultivating mindfulness in your life, there is not one thing that you do or experience that cannot teach you about yourself by mirroring back to you the reflections of your own mind and body”, Jon Kabat-Zinn

Over the past years I have written about the fact that meditation is evidence based, that its scientific credibility has been shown by fMRIs as being capable of changing brain pathways. Neuroplasticity, the ways in which the brain is capable of changing itself has brought new hope to many. Neuroscientists have shown that meditation practice is not a New Age airy-fairy endeavour but that it does have scientific value and emotional benefits in a world desperate for ways in which to end the suffering of many.
I am currently in the middle of a program of mindfulness, the third of such meditative training practices I have undertaken in the past 20+ years. For me, a cardiac patient and one who lives with fibromyalgia, the process of daily meditation is one which is imperative for an acceptable, if not good quality of life.001
While I have written extensively about meditation in general, based upon my earlier experience of meditation at the Shambala Centre, and one of the ‘courses’ I took at the university, I have not discussed the more specific mindfulness-based cognitive therapy for depression as it is new to me.
For those of us with chronic pain, anxiety and depression are constant companions. The comments and letters I receive daily from readers tell me that the same is true of most who live with fibromyalgia. For that reason I have been taking the MBCT program offered in the city where I live, in particular because my anxiety level is so very high now that I have had a heart attack. It has helped tremendously. I am working on living moment to moment, trying not to look back nor into the future. It isn’t easy and requires discipline to do the practices daily.
I am fortunate to be in a program led by two extraordinary women who are experienced as a meditator and are able to handle groups in a very relaxed, kind, thoughtful way for two hours. There is meditation, discussion and education happening at various times throughout the program and we are all made to feel as though our thoughts and feelings are important. Even more fortunate this is offered without cost within a safe environment. Unfortunately, it became one more undertaking at a time when I was doing a heart rehab program. Nonetheless, I knew that this was an important part of my training to accept yet another struggle with health issues.
The ‘aha’ moments for me happened when I truly began to understand a few years ago that fibromyalgia is a life long challenge and that the only person who could help me was me. Reading Jon Kabat-Zinn’s works further enhanced my realization that I expended many hours anticipating pain and fatigue, worrying about the next flare up, filled with regrets about the past, and how distraught I am with the label of the fibromyalgia. In spite of this condition being non life threatening, my quality of life was not what I wished it was. Sitting still for twenty minutes a day was not something I relished. Meditation takes a great deal of commitment as it is not something one can do haphazardly, but when I practiced regularly I found I was able to be less reactive when the flare ups did occur. My nervous system loves it when I work to train my mind to become more calm. I can change those neural pathways and take another route through my mind.!
For the first two months following my heart attack I did not meditate. I was filled with anxiety and depression. While there was a heart rehab program dealing with diet, exercise and medications I could not find what my body and mind craved more…help for those emotional challenges that were self-destructive to my well-being and peace of mind. By chance I found the open Mindful group and subsequently an 8 week course that I was so desperate for during this crisis in my life. I am back on track with meditation and hopefully will continue with the discipline that is required to practice every day. Kabat-Zinn describes mindfulness:” It is the process of observing body and mind intentionally, of letting your experiences unfold from moment to moment and accepting them as they are” (Full Catastrophe Living, p.23). It is not easy and requires a commitment and daily practice, and there isn’t anyone who can do this for me. One would think that sitting still, allowing thoughts to emerge as they will, then labelling them “thinking” and gently pushing them away and focussing on the breath (over and over I might add) would be an easy task. It sounds so simple, yet it is perhaps the most difficult task I have undertaken- that is why it is called ‘mindfulness meditation ‘practice’!
Now living with two chronic conditions I will perhaps always be an anxious person but the earlier days of deep depression have lifted and there is something to work towards- a future with a recipe for hope, one where negative thoughts are just that…thoughts that can be dispelled.

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Chronic Illness/ Stress/ Anxiety/Depression

April 20th, 2013

“Pleasure is oft a visitant, but pain clings cruelly to us , John Keats

Living with fibromyalgia, heart disease, asthma, arthritis, COPD to name but a few chronic conditions, is often overwhelming; it is little wonder that anxiety, panic  and often depression accompany our everyday lives. The myriad of symptoms such as pain, fatigue, and/or breathing difficulties pre-occupy us and curtail our activities of daily living. The stressors we endure on a constant basis under ‘normal’ circumstances are exacerbated once we have become labelled with a particular diagnosis. We are daily inundated with messages of fear, gloom and doom: wars, unemployment, bombing, climate change, poverty, racism, sexism, homophobia, fast paced technological living…the list is endless.  With at least one debilitating health condition to contend with we have an increase in our stress levels. What is to be done? What is to be done with those of us who face living with serious conditions that can inhibit a good quality of life and  seem to require constant vigilance ? There isn’t an easy answer and we usually have to become the experts of our own lives. While vigilance is an appropriate response to our health issues, it is hyper-vigilance that can be debilitating as this is a major stressor.

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Fibromyalgia, Heart Disease and Women

February 25th, 2013

“One out of two women are going to have, live with,and/or die from heart disease and stroke,…It is amazing women are still not getting that message, and one has to ask why.” Dr. Martha Hill

On January 19th I suffered a heart attack. For that reason I have not written much in the past several weeks. Writing about the ‘event’ is not easy. I could not have survived emotionally without the wonderful advice, support and  assistance I received from myheartsisters.org.  The owner of this website, Carolyn Thomas is an extraordinary woman and a  heart attack survivor herself. Please go to her website and educate yourself.www.myheartsisters.org.

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Fibromyalgia. Frustration.Forgiving.

December 22nd, 2012

“Forgiveness is the sweetest revenge”, Isaac Friedmann

Anger is not good for those of us with fibromyalgia. It activates our nervous systems to an unhealthy pitch and can bring about a flare-up. I personally have many anger issues that I struggle with, like  against: those who make war, kill others, abuse, steal, lie, are homophobic, sexist, racist,classist  and are not concerned about issues of social justice. Now I am angry with  a new breed of people, those who hack. My website was hacked by someone who doesn’t understand what it is to suffer from chronic pain, fatigue and a host of other symptoms that present us with daily challenges. Why this website? The people who write to me are those with day- to- day difficult living issues.

So, now after a few frustrating days, the site is up and running again and it is time to let go thinking of all those hackers out there. It is important to dismiss all anger that isn’t going to bring about social/political change and over which I have little control. So, I will stop being angry with you hackers out there. I forgive you for your mean mindedness.

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Fibromyalgia and winter

December 15th, 2012

“Winter is the time for comfort, for good food and warmth, for the touch of a friendly hand and for a talk beside the fire: it is the time for home”, Edith Sitwell

The winter blues descend upon us if we aren’t careful. This is a melancholy time of year and one which can bring about loneliness, depression, fatigue, anxiety and hopelessness. We remember that the ancients saw this as a time to bring in some boughs, a tree, and to light candles to celebrate the hibernation of the season. Trees, decorations, lights, wreaths are not  religious rituals, but that which our ancient ancestors celebrated at solstice, reminding us to welcome a season of rest.

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Fibromyalgia and Transforming the Brain

November 15th, 2012

“Mindsight is a kind of focused attention that allows us to see the internal workings of our own minds”, Daniel J. Siegel

While much has been written about the brain and the ways in which it can change , rewire itself, create new circuits, little has been written about the mind itself as the conduit for the brain. The majority of neuroscientists embrace the materialist theory that what can’t be seen or touched does not exist.

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Fibromyalgia and Panic Attacks: Cognitive and Somatic Sensitization

July 17th, 2012

“If you are experiencing strange symptoms that no one seems to be able to explain, they could be arising from a traumatic reaction to a past event that you may not even remember”, Peter A. Levine

Two words that are now often coined in conjunction with fibromyalgia are   cognitive sensitization and somatic sensitization. I have been exploring the research in this direction for the past couple of years and have recently had another ‘aha’ moment. I am not sure which comes first but with regard to ‘cognitive sensitization’,  because of the excessive degree of empathy for others and fear/anxiety for ourselves there is vivid brain activity in the amygdala.  People with fibromyalgia worry excessively  and our attention to health related information is extremely high.  The meaning that pain has for ourselves, the sufferer, or for others whom we perceive to suffer, poses increased threats which affects ‘somatic sensitization’, that is, increased reactivity of the nervous system. In turn this lowers the pain threshold and affects pain tolerance; the consequence is that  the fibromyalgia syndrome  develops.  The two are interrelated but what does that mean in simple language? One hears, in fact seeks out, health related information, subsequently anxiety and fear develop (the amygdala is over reacting to perceived threat) increasing the overstimulation. Then a low tolerance for pain develops. Accompanying this pain is a myriad of other symptoms. But is this too simply stated? What can this cognitive sensitization actually produce within ourselves? This is a process within the brain as it receives cues that bring about arousal from a past traumatic event, that becomes an actual sensitization of the neuro system.  In what ways then does this anxiety/fear invade our brains?

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Fibromyalgia, labelling and the brain

June 19th, 2012

“The changed brain stays changed”, Barbara Arrowsmith-Young

The book I have been reading The Woman who Changed her Brain is not about fibromyalgia, but I am struck by  how Arrowsmith-Young has been able to articulate the ways in which one can change the brain. Her focus on neuroplasticity is one  issue I have been writing about for some time now and I hope that the readers will read about  these “traffic jams in the brain” ( comment written by Alvaro Fernandez), or a “neurological traffic jam” as Dr. A.Jean Ayres calls the condition SPD, which in some ways is comparable to fibromyalgia. People with fibromyalgia do have it within our capacity to use the research to  control our  pain and other symptoms of this syndrome . It isn’t easy and requires a great deal of dedicated work in order to change our brain pathways. I have accomplished this only minimally. It is more difficult with older people, but still possible.

Readers will notice that this website is funded by me alone and I do not place ads, nor is this website a money making endeavour. Rather, it is one which presents information which I hope is written in easy to understand language without too much academic or medical jargon that many with fibromyalgia who might be suffering from brain fog do not want to wade through. Nonetheless, since researching the topic of fibromyalgia over three decades, I have to confess that I have  often, throughout the years, somewhat changed my perspective, or elaborated upon ideas that are intriguing but cannot be proven scientifically regarding this condition. This is one such dramatic time that I am experiencing a slight shift in my thinking, or at the very least a questionning of many of my ideas.

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Fibromyalgia, Chronic Fatigue and childhood trauma/ abuse

April 4th, 2012

“I have a strong sense that fibromyalgia may well be based on extremely early and probably preverbal trauma that often is difficult to document in a patient’s clinical history”, Robert Scaer

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Fibromyalgia and pelvic floor exercises: their effect on continence, irritable bowel and intercourse

March 14th, 2012

“Pelvic floor issues can make you feel very vulnerable, depressed and as though you are aging fast”, Michelle Kenway

Exercises in general are the bane of those of us with fibromyalgia and I have not been able to find books that address specific instructions regarding those which will not cause further pain. QiGong, TaiChi, Feldenkrais and other movements for general toning are beneficial to everyone and in particular for those of us who tire easily and cannot sustain exercise for long periods of time. Videos/cds are available for QiGong and I have one which I practice daily, that is, the 7 movements which takes about 15 minutes of my day. While there is a minor focus on meridians I tend to ignore that concept (since who can find either a meridian or a chi in the human body? For that matter who can find a mind or a soul? I prefer to ignore that language) and instead I do the movements which seem to help with the tightness of my muscles. Furthermore, as I have repeatedly written, movement is necessary for changing the brain and patterns we have developed for many years because of past traumas and our overly stimulated nervous systems. But, of late I have become concerned about pelvic floor disorders and the exercises that have been developed by physiotherapists and I have made this the topic of interest for these last three blogs. These have become actual mechanical issues which require hard work and discipline in order to live life more comfortably.

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Fibromyalgia and bladder/pelvic floor issues: childbirth, menopause and estrogen levels

March 4th, 2012

“The pelvic floor and bladder muscles work together but in opposite fashion. As one contracts the other relaxes. This occurs by reflexes sent between the two muscles and is governed by our brain and nervous system”, Kelli Berzuk

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Fibromyalgia and pelvic floor disorders: incontinence, frequency, urgency, prolapses

February 26th, 2012

“There’s a one in three chance that any woman reading this book has a secret: incontinence- the problem of being unable to always control her waterworks”, Pauline chiarelli

This knowledgable  Australian physiotherapist writes about such issues as incontinence, frequency, urgency, prolapses and bowel issues, all concerns of people with fibromyalgia. I highly recommend searching for her books and articles regarding  pelvic floor disorders (PFD). I have only recently become aware of  these issues and frankly I have become absorbed with the research and ‘aha’ moments I have experienced. Many have written to me privately and asked about PFD and I have to confess I did not pay much attention to the topic until now. Another very informative book I laughed so hard I peed my pants! written by Kelli Berzuk, also a physiotherapist (Canadian) is replete with information  and techniques for working with PFD . It is extremely useful and well written, outlining the many factors which lead to these conditions, among them childbirth, menopause and aging, covering the broad spectrum of women’s hormonal cycles.

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Fibromyalgia, hope and gratitude: are they possible?

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 big 3 of fibromyalgia treatment: meditation, light exercise/movement and diet will change many people’s lives, so for that I am indeed grateful. Recognizing the past traumas that have led to our condition and finding ways to change our brain pathways and calm our overstimulated nervous system is part of this process that leads to hope for a better life.

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Fibromyalgia and happiness: Overcoming anxiety and depression

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.

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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.

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Fibromyalgia and night time traumas:fear of the night

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.

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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.

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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.

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