“America is one of the few advanced nations that allow direct advertising of prescription drugs, Robert Reich
BigPharma makes huge profits from those of us suffering from chronic pain, fatigue, depression, anxiety, itching, digestive issues- to name a few of the common symptoms of fibromyalgia. Every day we are inundated with advertisements about prescription drugs that would alleviate these symptoms. Equally as rich is the vitamin industry which advocates specific supplements for the treatment of fibromyalgia, few of which are science based. Generally we take them willy nilly without any idea if they are helpful or not.
Just as I thought I had experienced everything unusual with regard to this annoying, frustrating, challenging dis-ease, fibromyalgia, I developed another aggravating symptom- VERTIGO! It all began one month ago, at night, turning over in bed, the room began spinning. It was very frightening. It lasted about 30 seconds followed by nausea. I had another episode the next night as well. The morning after the second episode, leaning forward I had a very violent attack which prompted me to go to the doctor.
This vertigo is not to be confused with dizziness that is brief and passes quickly. Rather, vertigo is experienced as spinning. It was described to me as small calcium crystals lodged in the inner ear and could be encouraged to move through by a positional manoeuvre. The doctor asked me if I was game to try this technique and I agreed. Lying on the table my head was hanging somewhat over the end while he held my head and rotated it for 30 seconds. This manoeuvre is described on the Mayo Clinic site and it is suggested that the person can actually try this at home.
“We can only become what we are by the radical and deep-seated refusal of that which others have made of us”, Jean-Paul Sartre
It isn’t often that I have the opportunity of sitting down for five hours with someone who is, like myself, an older woman, living with fibromyalgia. I had this pleasure recently of meeting Dr. Kaye Brand from Perth, Australia who was visiting Halifax, Nova Scotia. She is a physiotherapist and President of the Fibromyalgia Support Network Inc. in Western Australia (http://FibroNetwork.org.au) . We had a great exchange of ideas and she graciously consented to be interviewed by me. What follows is her story interspersed at times with my own.
” Most of us have unhealthy thoughts and emotions that have either developed as a result of trauma or hardships in their childhood, or the way they were raised”, Steven Seagal
It would seem that those of us with fibromyalgia have developed the condition at an early age which may have taken a tremendous shock, accident, or crisis to bring about a full blown fibromyalgia. Some of us have had repeated crises in our sensitive lives and did not even experience a single unusual occurrence for the syndrome to develop. Nonetheless, we are a group of people with specific personality traits that allow us to dwell on trauma that seems to be stuck in our minds/brains reactivating the experience more frequently than is healthy. So, how in fact can we find ways to train the brain to refocus away from past trauma? The work of Dr. Richie Davidson, neuroscientist, has presented us with the interesting option of “spending as little as 30 minutes per day training our minds to do something different” (p.52 Mindful August 214) which can result in changing the brain. To that end I had decided that quilting was not the answer as I had previously tried that and not had much success (see blog Fibromyalgia and Multitasking, May 17, 2009). Instead I would try my hand at writing about personal issues.
“Besidesfocused attention, other factors that enhance neuroplasticity include aerobic exercise, novelty and emotionalarousal”, Daniel J. Siegal
I have been absent from writing on his site for over two months because I did not practice what I preach. While I have been an advocate of neuroplasticity, that is, the power to change our brains, I have not heeded that which I know to be an approach that is safe for those of us with fibromyalgia. In fact, aerobic exercise, novelty and emotional arousal are the three key ingredients of a health lifestyle for those of us with chronic pain. Focused attention is therefore paramount for us; we need to be constantly in touch with the changing circuits of the mind. Mindfulness meditation is one of the key links to focussed attention, to living in the moment. But, it is the combination of the four elements cited above that present a balance for those of us with the overstimulated nervous system that challenges us daily.
” Our memory is in large part the starting point for how we think, how our preferences form, and how we make decisions”, Maria Konnikova
Several weeks ago on CBC radio when I heard an interview with Dr. Konnikova regarding the science of memory , I became intrigued with the ways in which she has based an understanding of neuroscience upon the brains and memories of two fictional characters- Sherlock Holmes and Dr. Watson. Being a Holmes lover and extremely interested in how the brain works- as my readers will well know from my many blogs, I hastened to read this amazing book regarding these two distinct minds which she dubs the brain attics. This term she pilfers from Holmes who said: “I consider a man’s [sic] brain originally is like a little empty attic, and you have to stock it with such furniture as you choose” (cited in Konnikova, p. 26).
“The happiest women, like the happiest nations, have no history”, George Eliot
I have based my unproven theory about why more women than men are diagnosed with fibromyalgia upon a feminist analysis of the political and cultural roles of women in societies in general- both historically and at present, and how gender is socially constructed. I have not changed my mind on this issue, but it is indeed more complex than that. However, I have begun to look less at statistics in regard to the ratio of women to men because I believe that fibromyalgia is a catch-all term that includes both genders who suffer from chronic pain and that it is under-reported by men. In my view the concept of fibromyalgia developed as more and more women began to speak out about similar characteristics and symptoms which encouraged physicians to deem that it was primarily a condition that afflicted more women than men. There isn’t any way to be accurate about how much of the population of any country has fibromyalgia. In many places there isn’t even a term for the condition; more to the point many men are hesitant to report the symptoms to a health care professional for fear of being seen as less masculine. There is little doubt that for bi-sexual and transgendered people the issues are even more complex.
It is widely known that women, more so than men, are more prone to seek medical attention for both their families and themselves. Furthermore, women are generally more sensitive to bodily changes and other nuances that are often difficult to describe. An example of this is the reported “sense of impending doom” that women often experience weeks or days before a heart attack (I can attest to that!). Yet, when women mention to their health care providers symptoms that should be suspiciously attributed to heart disease, there is still a general misconception that heart disease is primarily a man’s condition. Conversely, when a woman discusses her chronic pain, fatigue and other symptoms, the label of fibromyalgia is more readily applied. If a man admits to having chronic pain the affected areas are more likely to be vigorously examined and attributed to, for example- a disk, muscular strain and so on. It is my view that emotions, in particular, anxiety, is responsible for fibromyalgia. Since emotions are culturally and socially defined girls are perceived to be sensitive and emotional whereas boys are rewarded for being dominant. However, the differences are in how emotions are expressed rather than experienced.
“My anxiety remains an unhealed wound that, at times, holds me back and fills me with shame-but it may also be, at the same time, a source of strength and a bestower of certain blessings”, Scott Stossel
I have begun to think of fibromyalgia as an extreme case of prolonged anxiety that began in early life, perhaps in utero, or even as an inherited gene. In addition to this epiphany of mine, the concept of a ‘highly sensitive person’ (HSP) has changed for me to mean the ‘highly anxious person’. Having just read both Smith’s (Monkey Mind)and Stossel’s (My Age of Anxiety) memoirs (and Stossels’ science and historical account of anxiety) I have become convinced that fibromyalgia is another word for heightened anxiety. Since I am not a therapist, I can only speculate about the definition/cause of fibromyalgia, but to this date my proposed theory is that anxiety, hypersensitivity and fibromyalgia are identical triplets. I have just within the past year ‘come out’ (as Stossel has) as a highly anxious person, rather than one who has the fuzzy label of fibromyalgia.
“Winter is not a season,it’s an occupation”, Sinclair Lewis
It appears that there is more depression and anxiety in the winter. Seasonal affective disorders are frequent. Despondency, particularly in the dark, seems to last forever on those nights when one cannot sleep and daylight is still hours away. There is more reflection about our lives that can lead to sorrow and suffering. It seems too that the brain is even more eager to focus on the past memories that bring about reliving fearful events. Anxieties abound, especially when one is awakened at 3 a.m. and the night terrors are at their worst.
It is at this point that we can do the mindfulness awareness practice of “learning to stay”, as Pema Chodron has written. In fact, there is little other choice for us. She writes: “The pith instruction is, Stay…stay…just stay”. When we restlessly toss and turn at night we have to calm the mind and settle. When it is dark at 4 p.m. and we begin the mantra of asking ourselves if the pain, fatigue and endless itching will continue until daylight and even beyond, we have to stay with it. When our bodies once again betray us we have to learn to speak to it in a non- judgmental way, for example: “So here it is again, that pain in my left foot. Okay now, why are you here? Well, you’ll probably leave in a few hours, so let me just stay with you while you do your thing”. Living moment by moment in this way will cut short the time brooding and ruminating about past experiences that have brought about night terrors, sleeplessness, aches and pains that seem non-ending. Will these aggravations be there in the morning when daylight once again appears? Probably-maybe- as many of us experience that dreadful feeling of fatigue upon awakening. But, there is a strategy we can employ. It is the BODY SCAN TECHNIQUE…the focussing of our attention on various parts of the body and staying with each body part, no matter how painful and accepting every area for what it is at that moment. Rather than being critical of ourselves we can stay in the moment and just let it be. Our struggles with the symptoms of fibromyalgia always exacerbate the fearfulness of the dis-ease.
” The truly gripping thing about anxiety had alwaysbeen how physical it was”, Daniel Smith
I have little doubt, but no absolute proof, that anxiety is the root cause of fibromyalgia. I know many anxious persons who do not have fibromyalgia, but I do not know any person with fibromyalgia who does not suffer the plague of anxiety. It could be the chicken/egg dilemma but I suspect fibromyalgia is the result of long term anxiety which shows itself in the form of body pain, among other physical manifestations. The book featured here by Daniel Smith, while somewhat a bit too sexually graphic at first reading, is one in which anxiety in the extreme is presented honestly and sometimes overwhelmingly. It is a sad, yet funny documentary about the many ways in which this condition can affect our bodies very dramatically.
“Self-compassion is a more effective motivator for change than self- criticism”, Kristin Neff
Those of us with a chronic health condition are generally very critical of ourselves. Our self talk is filled with anger for not “pulling ourselves up by the boot straps”and living life in a more positive way, instead of succumbing to anxiety and depression. We often feel like failures, particularly when we hear of others who might have the same degree of suffering that we have but who appear to be doing so much better than we are. We are much more kind to others than we are to ourselves.
“Open your heart to your suffering”, Toni Bernhard
There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’ (a term I am unashamed of borrowing from Carolyn Thomas- www.myheartsisters.org). Often thought of as malingering, hypochondriac, weak, attention seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system which cannot sustain itself in a healthy manner any longer. It is as though we have over stretched the central nervous system just as a rubber band might become less elastic after constant over stretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal . In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue and myriad of other symptoms with which we are faced.
“In illness words seem to possess a mystic quality”, Virginia Woolfe
The phrase: “It is what it is”, rooted in Buddhist philosophy, is beginning to irritate many people. But, personally I like it; it is an apt description of my health status. The words resonate with me and do not have a mystical quality as Woolfe suggests. It gives me a sense of acceptance for that which I can’t change.
Today I bought the October issue of Mindful magazine. As I was reaching for a candy bar while paying for the magazine I laughingly asked the young man if he thought that if I meditated more I might get over my sugar addiction. A lovely, calm looking guy, he said in a sweet voice: “No, but you will become at peace with it”. In short, it will always be my challenge, the same way that fibromyalgia and heart disease will be. It is how I will choose to live with them in a mindful, non judgmental way that is the secret to some degree of peacefulness . It is coming to the realization that I cannot change my diagnoses but I can come to accept them without constantly looking back into the past to wish I had lived my life differently, which may have caused or accelerated my conditions. It is also not about predicting a bleak future, which is not now a reality, but living in the moment and finding ways to arrest those negative thoughts and self talk that have such a profound effect on my everyday life.
“Having that sense of anger leads people to actually feel some power in what otherwise is a maddening situation”, Jennifer Lerner
There can be little doubt that emotions play a large part in a fibromyalgia flare-up. The emotions can be happy , sad, fearful, anxious or any of the myriad of those which affect us through out the day. While I have often written about the ways in which we can work with emotions I have been struck with the continuous evidence based research regarding meditation and exercise and so I try to do so every day.
“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.
“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.
“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.
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.
“Pleasure is oft a visitant, but pain clings cruelly tous“ , 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.
“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.