“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 traveled. So many reports their fibromyalgia began with an accident, surgery, violence, 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 marriages, parenthood, divorces, job losses, and changes, loss of loved ones, chronic illnesses, widowhood, moves, menopause, retirement, and even significant birthdays, among many others, can be equally as traumatic to the nervous system. Like long-term anxiety and stress, generally, these are slower processes for fibromyalgia to develop and are often referred to as ‘secondary’ fibromyalgia.
The brain needed 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, anxiety 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 on 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 is a good exercise for us to record all the major transitions and major traumas we have experienced during our lifetimes 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 will result in insights that led to fibromyalgia. A good therapist can help; talk therapy cannot be underestimated.
“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, 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.
Before medicare in Canada, it is likely that people could not afford to go from doctor to doctor hoping for a name for this invisible dis-ease. It must be dreadful in those countries whose citizens are not insured and cannot afford visits to physicians. Still, in every country in the world, not just those who do not have access to health care for all, many of us with such conditions as fibromyalgia experienced health professionals who are dubious about the very existence of this dis-ease. So, the question arises: what do we do when we encounter those who do not believe there is such a syndrome as that which we live with day after day? How do we deal with the constant demands of others who do not understand that while we look healthy we are not able to participate in the usual activities that others enjoy? It is only ourselves who can take control of our own situation with those doubters. It isn’t easy.
Summertime when there are crowds at concerts, museums, or on beaches where the noise level can be high becomes especially problematic. It can be overwhelming to even attend family barbecues/reunions when there is perhaps music and laughter and our nervous systems then go into overdrive. Children, young nieces, and nephews, grandchildren whom we love, are by their very nature easy to arouse and excite us.
Sometimes it seems like we have to be in a cocoon just to find peace, while at the same time feeling happy and depressed simultaneously at gatherings that should give us joy. The difficulty is how to set limits on those occasions which over-stimulate us without offending anyone or embarrassing ourselves. Finding a physical space where we can escape for a few minutes and calm ourselves is not often easy, but is so very important to our well-being. Those of us who recognize that the few moments of quiet are necessary to avoid flare-ups must become experts in finding that private space. It’s all about setting limits to what we can tolerate, which at times seems impossible. It is then that we must bring on our strategies, such as taking time to deep breathe, finding a place where we can do a minute meditation, and avoiding as much as possible those who are particularly excitable and cause us to go into overdrive. Practicing these schemes of relaxation can open doors for us that we once thought too difficult to enjoy.
The summer is almost over. Time to gear up for the cool autumn! Relax, breathe, take time to open up a new way of being in the world, think positive thoughts, and move that body as much as possible.
” My friend…care for your psyche…know thyself, for once we know ourselves, we may learn how to care for ourselves”, Socrates
Fibromyalgia does not allow for any kind of scientific tests to aid in making the diagnosis of the syndrome. It is not a disease, but a broad spectrum of ‘symptoms’ which appear to be somewhat universal, that is, primarily pain, chronic fatigue, sleeplessness, and often depression, but always present as chronic anxiety.
The official diagnostic wording was made in 1990 by a Committee of the American College of Rheumatologists, lead author Dr. Fredrick Wolfe, who has since suggested that fibromyalgia is actually a response to stress, depression, and anxiety (quoted in Grot and Horwitz).
While I subscribe to this view that fibromyalgia and its sibling chronic fatigue, along with other invisible diseases like multiple chemical sensitivities and post–traumatic stress disorder are not actual diseases, there is a danger in classifying those of us with these conditions as hysterics who cannot manage our lives and have given in to the role of a sick, mentally ill person.
Nothing can be further than this in my attempt to understand how it came to be that those of us with FMS/CFS are highly sensitive to our environments/stimuli/other people’s needs. Yet, even in categorizing ourselves as highly sensitive persons(HSPs), we risk the danger of further medicalizing ourselves and becoming labeled as people who are in need of help through mood-altering medications. We can become labeled as HSPs and then become fodder for the pharmaceutical companies hence in a category of the ‘mentally ill’. This is indeed a conundrum as we ARE highly sensitive persons with easily aroused nervous systems, but the help has to come from within ourselves, not from medications that help alter our emotions.
The book Diagnosis, Therapy and Evidence Conundrums in Modern American Medicine, by Gerald N Grot and Allan V Horwitz, points out the lack of pathobiology in FMS and CFS. The pharmaceutical industry has been the victor in all of this and we have fed into it unwillingly in our effort to alleviate our suffering and obtain some degree of relief. So many write to me citing the numerous medications you are taking. The side effects are frightening. What is to be done?
I know of no other answer than that of the neuroscientists who have worked on strategies to change our brains. We can’t change societal views of people whose nervous systems are highly in tune with their environments, but we can change our responses to stimuli. I have read recently that with the work of the scientists who are making tremendous advances in understanding the brain that this will be the first generation of people to be able to look into our own brains. IMAGINE! WE WILL SOON BE ABLE TO SCAN OUR BRAINS! Brain-based therapy! We will be able to scan for both positive and negative psycho-social emotions! And haven’t we tried to do this in the past? A friend pointed out that mood rings (I had one!), then bio-feedback (I did that in the 1980s!) were both attempts to ‘read’ our emotions. While this scanning of our brains may seem to be frightening to many (especially neuro–ethicists), it could be a relief to many, since we are frequently experiencing thoughts of disaster and impending doom from the hyperactive amygdala. Maybe the time will come when we can change those impulses that lead to negative thoughts and images through mechanical means. In the meantime rather than hoping for others to work with our thoughts and emotions, we can learn to become our own change agents.
The intriguing research and theoretical debates about the brain are related to the mystery of how we develop consciousness, and in the case of fibromyalgia, how does our consciousness relate to our real-life experiences of pain? Philosophers, neuroscientists, psycho-neurologists, sociologists, and neuro-ethicists are studying, researching, and debating this mind/body relationship and the nature of consciousness. For those of us who are interested in finding out how our consciousness manages to get to our brains to communicate that we are in pain, the whole world of science/philosophy is exploding in this regard. Not soon enough, nor very understandable for the general public. But this book may provide some easier-to-comprehend answers (Christof Koch, author).
“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 (FM) I awoke several times last night. During those wakeful periods, I wanted to write this blog with great haste in protest for whoever would read this rant from me. I have to admonish my readers that the report is not to be viewed with great enthusiasm. The IOM state that CFS should now be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such and 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 that 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 ongoing for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?
The first indication of this awakening of the American health experts to the reality of CFS and FMS came to my attention from an article by André Picard, whose articles I respect and admire tremendously. It is from the newspaper The Globe and Mail, Tuesday, February 17, 2015 A11, and is in regard to Chronic Fatigue. While the f word (fibromyalgia) is only mentioned once it is nonetheless aligned with chronic fatigue and I have conjoined the two for many years. In fact, there may be quadruplets involved here if we combine multiple chemical sensitivities (mentioned by Picard) and PTSD. Happily, Picard calls CFS and FMS a ‘disorder’ in spite of the fact that the U.S. Institute of Medicine has reported CFS as a disease. I continue to call it a ‘dis-ease’ or a syndrome and will not give in to the claim or possibility of a microbe causing disease, in spite of the fact that it does indeed cause secondary illnesses.
The second sighting of this American report was noted on February 21, 2015, on the CBC news. So now, after decades of the suffering of millions of people worldwide, the voices of those of us with several of these invisible, but alike, diseases will be legitimated. Furthermore, the way in which it is to be a bona fide condition worthy of being taken seriously is to call it an actual disease.
So, how closely are CFS and FMS related? I have debated this for many years. I have searched, researched, and contemplated the relationships between the two as well as what I once called Gulf War Syndrome, shell shock, battle fatigue (now called Post Traumatic Stress Disorder) and the elusive Multiple Chemical Sensitivities- all of which are invisible, said to affect women more commonly than men (with the notable exception of PTSD) and cannot be diagnosed with standard medical tests. My conclusion for all of these disorders is the same as it has been since my book and all the blogs I have since written. THESE ARE CONDITIONS THAT ARE CAUSED BY A HYPER-AROUSED CENTRAL NERVOUS SYSTEM IS HIGHLY SENSITIVE PERSONS. These disorders are not exclusive to highly sensitive women but to men and children as well.
It is important to discuss the commonalities among the four diseases of CFS, FMS, MCC, and PTSD. I will do so using the four main ‘symptoms’ discussed in the Picard article:
1) An inability to engage in pre-illness levels of activity that persists for at least six months, accompanied by fatigue. While generally this ‘pre-illness‘ is predominantly applied to CFS, the other conditions can be not only related to illness but are often attributed to traumatic events such as car accidents, violence, and situations that cause the nervous system to go into hyper-arousal.
2) The worsening of symptoms after any type of exertion (physical, mental or emotional). This symptom, post-exercise malaise, is seen as key. This symptom is highly evident in both CFS and FMS but can also be seen with MCC and PTSD.
3) Un-refreshing sleep. Therein lies a commonality among all the disorders.
4) Cognitive impairment. Once again the four diseases experience this to a greater or lesser extent. Also known as “brain fog”.
5) The inability to stand upright for other than short periods of time, a symptom is known as “orthostatic intolerance” which is extremely common in CFS and FMS and may or may not affect the other two disorders.
While it might seem as though there is a great difference between MCC and FMS to CFS and PTSD, in fact, the following is a list of the many symptoms of MCC and PTSD: muscle and joint aches and pains, fatigue, rashes, itching, memory loss, and confusion, all of which are common with the other three mentioned syndromes. As with the other disorders, anxiety, panic, inability to tolerate loud noises, bright lights, excitement, highly reactive to smells, frequent digestive disorders, and so on are the exact reported symptoms of all four. In short, all the mentioned diseases are similar to such an extent that it is difficult to differentiate among them. They remain controversial, lack any kinds of standard tests to help with treatment, and have a gender bias (with the notable exception of PTSD, because of the nature of the higher number of men in the military who have faced combat). One important distinction, however, is that people with CFS have been known to recover, unlike FMS sufferers.
These are all Medically Unexplained Illnesses( my italics; also see other blogs where I have discussed this issue)with symptoms that are common to all and cannot be separated from one another. As I have discussed repeatedly, the realm of study and research for these conditions should be with the neuroscientists who have made tremendous strides with brain studies regarding pain and the brain, and various strategies for changing the brain. Among them which I seem to be presenting over and over again are: mindfulness meditation, light exercise, talk therapy, deep breathing, avoiding caffeine, and especially helpful is taking on activities that are new to you, creative, repetitive, innovative, and enjoyable which will stimulate new neural pathways in the brain, and finally paying attention to situations which bring on added stress and living in as calm an environment as possible.
I liken the nervous system of those of us with all these invisible syndromes to an elastic band that has been stretched to its limit. We are never cured of this highly sensitive nervous system. Whether or not it is nature or nurture cannot be proven. We can only work with the hand we have been dealt. Almost, if not all of the hundreds of people, mostly women, whom I have heard from and made comments on this website, or interviewed personally have been overly empathetic, intuitive, and caregivers in one form or another. I have not been surprised at the number of nurses who have FMS and CFS, gay men, as well as other marginalized people whose lives have been filled with trauma. Some say that after a period of time CFS can be cured without lasting effects. I cannot attest to that, but I can say that those of us with FMS have lifelong challenges. I confess to not hearing from men in the military. I can only speculate that these are highly sensitive men whose nervous systems have been stretched beyond endurance.
So it seems that the IOM has been tasked by the U.S. Department of Health and Human Services, the National Institute of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, the Social Security Administration- all to examine the evidence base for CFS. What on earth are they to do? Are CFS and FMS just now being discovered? Have they ever read any of the comments on this and many other websites exploring the commonalities among all of us worldwide, suffering from these conditions which are so closely related? What do they hope to find that wasn’t explored decades ago? It is not a disease! There isn’t a cure for a permanently hyper-aroused nervous system, always on alert and hyper-vigilant. We are highly sensitive people who, as Elaine Aron discusses in her many books, are like canaries in a coal mine. ( Please note: Aron does not equate the conditions I have just discussed with the highly sensitive person; her extensive work is about the type of people we are and she does not discuss specific disorders associated with this type of person, instead she believes it is a ‘gift’ to be an HSP; the theoretical relationship is mine and I do not want to misrepresent her). We have rich and complex inner lives. We startle easily; we process sensory data differently than other people; our nervous systems differ from the general population. We are highly empathetic and often intuitive beyond what is usual. This entire trend to label us as a disease entity boggles my mind- when I am not in a state of anger. I have to remind myself to breathe…
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 colored sneakers that bring a smile to most people. But, without them my legs and feet are painful.
I recently tried to describe my pain to a health professional but found I did not have the language or the energy to express how I lived day-to-day with something that is invisible to the eye yet affects my quality of life. Chronic pain has a life of its own. It is powerful, unceasing, and challenging. Doing something unusual like changing shoes, can bring on a flare-up that lasts for days. The changes in my muscles as they react to change elicit a response that is painful, I become afraid of the pain because it is associated with shoes that are unusual. And so, the cycle continues. My central nervous system signals the brain that there is danger and a threat is perceived. I have begun thinking that wearing all shoes, except the sneakers, is anxiety-provoking and painful. Therefore I have foot and leg pain, particularly at night after wearing ‘dress shoes’. Perhaps it is because I have polyneuropathy?
Specialized nerve endings, called “nociceptors” (pain receptors) respond to potentially damaging stimuli by sending signals to the spinal cord and brain. This causes the perception of pain. Chronic pain, which is the plague of those of us who suffer from fibromyalgia, is caused by the rewiring of the nervous system and is called central sensitization. It is a learning process that is generating chronic pain. This habituated thinking pattern of mine requires that I look at this sensation of pain and what is happening to my mind. It is important that I explore and face mindfully this central sensitization by exploring how the amygdala is always ready to give a signal to flee to that which is not even a potential threat. As I have learned in mindful meditation, it is important to live with the pain rather than fight against it. Change, even in shoes, is difficult for me. The amygdala is quick to try to avoid and escape from what is perceived to be a threat. The more I resist, the more the fear persists.
The pains that I experience in the legs are akin to peripheral neuropathy, that is, damage to the body’s peripheral nervous system. It causes muscle weakness and pain. The more that I experience fear the more accompanied it is the leg pain. While neuropathy is common in such conditions as diabetes people with fibromyalgia experience the same symptoms, which are pain, tingling, pins and needles, and weakness. I have these symptoms in both legs and arms as well as sharp shooting pains often in the back and shoulders. Unlike the diabetic however, the pains are not constant in fibromyalgia as they are in diabetes. I have to confess that Gabapentin does help. Unfortunately the side effects of weight gain and groggy head are very frustrating. There is evidence that people with FM have small-fiber polyneuropathy, but the evidence is inconclusive at this stage of research. There is still much to be learned.
HOWEVER, ONCE AGAIN WE ARE FOCUSSING ON SYMPTOMS OF AN ALREADY COMPROMISED CENTRAL NERVOUS SYSTEM RATHER THAN ASKING OURSELVES THE MOST IMPORTANT QUESTION: WHAT HAS PRECIPITATED THIS FEARFUL/ANXIOUS PERSON IN THE FIRST PLACE?
My theory is that we have experienced trauma from either an early age or in utero, or later in life, we are already a highly sensitive people (HSP), and subsequently, our CNS is generally always in a state of hyper-arousal similar to those who suffer from Post Traumatic Stress Disorder. Sexual or emotional abuse, surgery, accidents, war, loss of a parent- the list is endless regarding how an HSP experiences and lives with trauma. Furthermore, triggers or flashbacks bring on flare-ups.
There are many who believe that reducing the fear/anxiety rather than addressing the pain is the answer. But, if one has lived with severe chronic pain for most of her adult life, changing the brain is not an easy task. To add to my anxiety my body is now chronically unconditioned. I don’t move in a way that brings about good balance and posture. Muscles have atrophied and are weakened. I need frequent massages, physiotherapy, and chiropractic adjustments. Maybe then I can hold up the Leaning Tower of Pisa in Italy once more (note the sneakers I had on!) These pictures are difficult to watch when I am in so much pain. The question always arises: will I ever walk in comfort again as I did just a few short years ago?
” 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 upon hearing 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).
Chapter two regarding the concept of the brain attic was one that captured my intense interest as I have often referred to my own brain as one which is tired and needs emptying. I am hooked on wanting to change my brain and it’s bad/useless memories and having it become more like that of Holmes than Dr. Watson! The Watson attic (which in my case is constantly on high alert (the amygdala), is, in Konnikova’s words, “jumbled and largely mindless” p.29) and needs cleaning out. I need my brain attic to be more observant and recognize the memories which precipitate continuous anxiety/fear. More importantly, her emphasis on meditation training is in line with my own thinking about the ways in which meditation can clear out the brain’s attic memories, although as Konnikova says, it takes practice, practice, practice.
As with all the books I suggest as important reading material for people interested in how the brain and, especially memories affect those of us with fibromyalgia, I am leery about giving away too much in-depth information regarding the content. I encourage readers to read the book in its entirety. IT IS NOT A BOOK ABOUT FIBROMYALGIA– THE READER IS WARNED! It is a book about forcing the mind to be more observant and logical. Here I am trying to join together relationships that I have not been able to read about elsewhere.
Fibromyalgia is a mammoth puzzle and “your neck bone is connected to your head bone” ( a sentence from words to the song Dry Bones by James Weldon Johnson and J Rosamund Johnson). It is an appropriate analogy here. Let me tire you once more with the ways in which I have to this point, unraveled what for me has become some major aspects of the dis-ease. How to present it? A circle is not appropriate, nor is it linear so that visually one cannot uncover what I consider to be the gestalt, the complete picture. It seems to me I can only repeat words that are linked within a mishmash of brain/memories in a person who suffers from a Watson-type brain. What follows is my description of the fibromyalgia person.
First, there is the highly anxious individual who may or may not have developed anxiety in utero or in childhood (the old nature-nurture issue). This person has stored long-term memories in the attic’s ‘storage space’ which both Lars Clausen (in his book Fibromyalgia Relief) and Dr.Konnikova point out is calledconsolidation. It is likely that childhood trauma has been responsible for this storage. Every time a new stressful event occurs, the file (as Konnikova has coined it) is pulled out and more is added to this memory. The attic becomes more cluttered.
Secondly, this highly anxious person is at the same time the highly sensitive person whose fight–or–flight Watson- the brain is on the lookout for even more and more anxious memories to add to the file. It does not discriminate- “What’s stored is organized according to some associative system…” ( Konnikova, p.31), called ‘associative activation’. With the Holmes- mind one can acknowledge the emotion – in the case of fibromyalgia, it is fear/anxiety-but you cannot let it get in the way of objective reasoning (p.40).
Thirdly, we now have the body being affected by this constant hyper–vigilance of the central nervous system, from that part of the brain which is always on the lookout for new anxieties to add to the file. Other systems are affected, the muscular–skeletal seems to be the first to go! The immune system becomes compromised. Pain and subsequent fatigue begin, followed by a myriad of other disquieting symptoms, causing more anxiety to add to the memory pile up.
Clausen writes of memory reconsolidationwhich some neuroscientists are advocating. As Clausen has written: “Unless we reconsolidate the emotions we have of our past memories, we will continue reacting to the old emotion of each memory” (p.71). In other words, we must clean out the attics of our brains! Consolidation is considered to take place within the first few hours so it is necessary to stop these emotions from becoming part of the furniture of the attic! However, in spite of the controversy that surrounds the issue of reconsolidation, there are those who suggest that previous memories can be made labile through reactivation of the memory, such as Clausen’s technique of ICE (previous blog).
Konnikova advocates being mindful, but there is more to changing the brain and subsequently those unwelcome stored memories. The vast scientific literature that has been presented over the past few decades based upon the neuroplasticity of the brain points to other techniques as well as learning to observe diligently. Movements such as Chi-gong, yoga, dancing, taking on new tasks that are creative and repetitive, music, and art all feed into the realm of strategies that together can activate new pathways. We are seeking to develop a Holmes brain where “thoughts, properly filtered, can no longer slyly influence your behavior without your knowledge”, (.p21). But Konnikova warns: “It won’t be easy”, (p.21).
“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. However, now that gender is currently socially constructed and is much more fluid, it has indeed become a complex issue and not as straightforward as I previously thought. 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 all genders who suffer from chronic pain and fatigue and it is under-reported by many who define themselves as traditionally female or male.
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 traditional men have been 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 trans-gendered people the issues are even more complex. But, things are changing as more military personnel are reporting post-traumatic stress syndrome, formerly known as ‘shell shock’ and then ‘Gulf War Syndrome.
It is widely known that traditional women, more so than traditional 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, are 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.
So why is it that women and men are treated so differently within the health care systems, in particular with regard to chronic pain, fatigue, anxiety, and depression? It is true that fibromyalgia is not life-threatening, and in my view is caused by lifelong anxiety issues in highly sensitive persons, but given the large numbers of people affected by the condition why is the focus still explored as primarily a woman’s condition? Even more to the point why is it that researchers are keen to explore what they perceive as problems within the woman’s body which cause fibromyalgia?
I have written extensively about the highly sensitive person and fibromyalgia, which I believe to be the same as the highly anxious person. This, in turn, becomes a mentally unstable issue that is more likely to be primarily another woman’s problem as more women report and take mood-altering medications than men. Yet, in the last few blogs, I have written the ones who have come forward recently to write about anxiety have been (white, privileged, self-identified) men, which, by the way, takes a great deal of courage.
Sociologically women’s lot in life, worldwide, is and has always been more difficult, suffering more frequently and dramatically from sexism, domestic abuse, victims of crime, ageism, racism, sexual abuse, incest, violence, poverty, and the many inequities in economic realms. It is little wonder that women suffer more from lifelong anxiety and their spirits are often broken. The question I often ask myself is why this has become medicalized and the conditions of both anxiety and fibromyalgia are thought to be shameful when it is because of the socially constructed women’s role in life? Searching for a lack of this or that in the bodies of those with fibromyalgia seems to be the end result – the effects- of the condition rather than the cause.
The exposed heart in this oil painting is how I interpret the ways in which most women are vulnerable. Even at this young age, without professional training, Jaden’s paintings usually reflect the open, bursting heart of women. Are our young women intuitively aware that life will be more difficult for them? Do the pressures of beauty and fashion, sexual activity, struggles within social structures that are constraining, and the ‘glass ceiling effect’ in the workplace, perpetuate our lifelong struggles with anxiety, even in the most ‘stable’ privileged environments?
Even more to the point what emotions are not discussed in the fibromyalgia rhetoric regarding people of color, LGBTQ communities, in war-torn countries, street people, and other disadvantaged groups that lead to this dis-ease? Surely their pain and fatigue, among the other myriad of symptoms, areas under-reported as those of more privileged groups, such as white men, that is, those who themselves suffer from anxiety expressed as a different phenomenon, particularly those in the military who have fibromyalgia known as PTSD?
I know more about fibromyalgia now than I did ten years ago and I am more than ever convinced that while there are strategies we can employ to work with our anxieties the idea of fibromyalgia itself is socially constructed to mask as a disease, when in fact, it is an expression of wounds to our psyche from which all people suffer to a certain degree.
“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’. 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 that cannot sustain itself in a healthy manner any longer.
It is as though we have overstretched the central nervous system just as a rubber band might become less elastic after constant overstretching. 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.
I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be curedof the pain, fatigue, intense itching, depression, anxiety, nausea, flu-like symptoms, and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard:” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.
I want to encourage readers to read this book as the daily/yearly experiences of Toni Bernhard are so similar to many who write to me often (and painfully), wondering how to keep on keeping on. After reading her book I decided to practice her exercise which she calls “drop it”, similar to ‘letting go’. As my anxieties escalate during the day I deliberately think about the thought I am having at that moment then I consciously drop it.
I live with the focussed anxiety of having a flare-up from fibromyalgia/chronic fatigue, living with a huge painful herniated L4-5 disk, and worrying about having another heart attack, all the while knowing I must exercise at least 30 minutes a day in spite of the pain. So, for me, the anxieties are almost constant. Dropping the thought has been very helpful.
I can’t say it lasts a long time, but I have been keeping on track and repeating the phrase over and over. In short, as I have been writing about for years now- I am trying to change my brain and short circuit that trodden down path to another that is called ‘living in the moment, or ‘mindfulness meditation’.
I no longer speak of my fibromyalgia/chronic fatigue with health care professionals- the search for answers is fruitless. I can experience joy if I live in the moment and not look back to a life that I can barely remember- one without pain. I can not predict what tomorrow will bring. I only have it now.
There are many of us living with medically unexplained symptoms, such as those fibromyalgia/chronic fatigue, multiple chemical sensitivities, Gulf War illness, and post-traumatic stress disorders, most of which are also called somatization disorder, a label that can place us in the realm of psychiatric investigation and therefore denigrated by many health professionals.
As Toni Bernhard has written: “As you experience the unpleasant mental sensations of being treated in a dismissive manner by this medical person, instead of reacting with aversion, consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity– directing the sublime state at yourself”.
This is the essence of mindfulness meditation- being kind to ourselves- exploring our thoughts without criticism, without judgment. In the words of Jon Kabat-Zinn: “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally” (Wherever You Go There You Are).
There isn’t any other way for us to proceed: we can’t change our diagnoses by lamenting, ruminating, seeking one treatment after another, or depressing about our conditions. Now comes the difficult part- practice-practice-practice what I preach. Be kind to me and open my damaged heart to my suffering, without reproach or wishing for what cannot be!
“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, overuse of cosmetics, whitening of our teeth, even the marketing of products to enhance the color 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 the appearances of a youthful women. 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 thinking about conditions that areinvisibleand about which we have shame because we cannot measure up to standards of health, for example, with fibromyalgia.
Fibromyalgia is a syndrome about which people often sigh and believe we should not indulge ourselves in lamenting about our pain and fatigue, as well as a myriad of other symptoms, rather we should just smarten up, ‘suck it up in order to feel better. I believe that health professionals are among the worst as the condition cannot be diagnosed through the usual medical tests and there is no known ‘cure’.
But, family and friends also blame the ‘victim’, even though I hesitate to use that phrase as we are not actually victims. Of course, this attitude of others makes us feel shameful about ourselves and the self-critic, ruminating voice within believes we are malingering and should become less vocal about admitting we have such a dis-ease, that we are asexual and sickly creatures.
The disdain that many health professionals and many of the general public portray to those of us with fibromyalgia can make us feel like we are hypochondriacs. The syndrome itself is a stigmatizing label all the more so because it is invisible and we look healthy. In her April 13th blog, Carolyn Thomas (www.myheartsisers.org) writes about Healthy Privilege.
She quotes Dr.Ann Becker-Schutte who writes: “Many physical health conditions and all mental health conditions fall into the category of “invisible illness”. Furthermore Dr.Becker-Schutte writes about those who are healthy and do not “see or understand because they have some degree of what I am calling healthy privilege”. I have found this to be even more obvious now that I have two invisible conditions: fibromyalgia and heart disease.
Several years ago I decided to let my hair go grey and not blow dry it straight as I did every day. I let it dry naturally and do not blow heat on my head, letting the natural curl do as it wants. I do not use make-up and use only moisture cream that does not have any of the nasty ingredients that are so dangerous to our health and cause so many sensitivities and itching.
Eye make-up is not an option as I am sensitive to it and to light and my eyes will burn and water if I use cosmetics on them. I have gradually let go of all the social demands to try to look younger than I am. It hasn’t been easy. As I look back on these almost 100 blogs I am always stunned by the hundreds of comments on itching. Until I gave up on most cosmetics I too found itching to be a serious problem.
I know many cases of women with serious allergies who continue to dye their hair and wear eye makeup and other cosmetics that actually induce itching and sensitivities. In fact, I have given in to the shameful, stereotypical view of the older woman who appears to no longer care about looking younger.
While I can do this to my bodily appearance, I cannot hide the pain and fatigue from myself but I do often hide it from others. It can be a sign of weakness of character to admit I have a hyper-aroused central nervous system. I don’t like this label. My casual appearance these days is amazing to many who do not know me intimately. I am told over and over how well I look; how natural I appear; how healthy I look; how I do not look my age.
Many cannot understand that appearances are deceiving. The shame for me is that I relish these compliments. Why would I want to tell them I am suffering from post-traumatic stress syndrome five months after a heart attack, that I live with pain and fatigue from fibromyalgia, and that I am taking many medications for heart disease?
I want to belong to the club of those with Healthy Privilege, not the clubs of those of us with an invisible disease of the cardiac sort who often induce fear in others about their own hearts, nor the dis-ease of fibromyalgia which has a stigma attached to it. These are the challenges we face living with conditions that cannot be seen; how we handle them is a sign of both our vulnerabilities and our strengths.
“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 healthizes.com. The owner of this website, Alexa Robber is an extraordinary woman and a heart attack survivor herself.
Women and heart disease have become a burning issue with me now. The problem as I see it with women and fibromyalgia is that we tend to think that all are related to our condition and negate symptoms that are seriously life-threatening. With me, it was shortness of breath and fatigue. I tended to think it was all due to fibromyalgia until it was too late; I had a heart attack and now must learn to survive with a damaged heart.
While there have been those who have written about fibromyalgia and heart valve issues, this wasn’t the case with me. I do know though that it is important to seek out information regarding the relationship between heart disease and fibromyalgia. There is so much that is unknown. My advice to you dear readers is to be very vigilant regarding your heart.
Heart disease is the leading cause of death among women. Please in this heart month, be sure not to mistake what you perceive to be fibromyalgia when it may be something even more serious. As a whole, health professionals tend to think of heart disease as a man’s problem. It is up to us to educate them and ourselves.
For now, I am on the road to a slow recovery with the help of family and friends.
