“Everybody gets so much information all day long that they lose their common sense”, Gertrude Stein
To write that I am frustrated, angry, and discouraged over the recent hoopla this week in the news from the U.S. Institute of Medicine (IOM) report on Chronic Fatigue Syndrome is to be putting it mildly. As is usual with someone who has CFS and fibromyalgia (FMS) I awoke several times last night. During these wakeful periods I wanted to write this blog with great haste in protest for whomever would read this rant from me. I have to admonish my readers that this report is not to be viewed with great enthusiasm. The IOM state that CFS should now to be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such for which a medication can be taken and our conditions would be cured. But as I have repeatedly written over many years, this cluster of symptoms which make up a syndrome cannot be ‘cured’ with the usual allopathic or alternative medicines. It is far more complex than that. Hunts for viral, bacterial and hormonal causes have been on-going for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?
“If there is nostruggle, there is no progress” , Frederick Douglass
There is a tendency among those of us with chronic pain to be ever so watchful on days we are in pain or extremely fatigued. We take it easy on those days and begin to wonder if we will ever be feeling well again. But, oh! On those days when we are feeling well our tendency is to be optimistic, think we are cured and immediately do more than we should. We then pay for it with a big flare-up. It is usually one step forward, one step backward. The struggle continues. Sound familiar?
” People with chronic pain inevitably develop an intimate relationship with their pain”, Deborah Barrett
The myriad of symptoms associated with fibromyalgia is vast, but chronic pain is among the most debilitating. Chronic pain results in a circular configuration of interrelated other symptoms, such as sleeplessness and fatigue not to mention the hopelessness and depression associated with them that are first cousins to the others. I have lived with them all since I was very young and now am facing the added burden of aging which can itself present many other challenges. Many days I ask myself :”what is to be done?” Then I fall into a state of despair. Other days I try to pull myself up by the bootstraps and realize that the only answer to my chronic pain must come from within me.Today, by chance I glanced at my bookshelf and found Pain Tracking staring at me asking me to re-read it and I felt the faint hope of some relief. I developed my own tracking system and this will be what guides me this new year.
I have brought on another pain attack- again! I have overdone it with social situations that have caused anxiety and resulted in overstimulation! This time the pain in my left foot is excruciating. The reason? I wore something other than the sneakers that are my daily companions. No, I did not wear high heels, but nonetheless they were not my regular footwear. There are many times I think I have to wear something on my feet that are a bit more dressy. Yet, I am now known to wear funky sneakers to most places, so why do I conform and wear ‘regular’ shoes when I know my body will rebel? Given that my muscles (like all of us with fibromyalgia) have become weakened over the years because of my inability to sustain regular exercise, I have found that supportive shoes are the best answer to stability. For that reason I have recently chosen to brighten my days with coloured sneakers that bring a smile to most people. But, without them my legs and feet are painful.
“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.