“The amygdala in the emotional center sees and hears everything that occurs to us instantaneously and is the trigger point for the fight or flight response “, Daniel Goleman.
Many years ago I had hoped that it wouldn’t take long before most would finally give up searching for viral/bacterial/hormonal or other CAUSES offibromyalgia and agree with my theory that this demon is caused by a hyper-aroused nervous system is highly sensitive anxious persons! My book was the first to write about that and now I find that in the magazine Psychology Today, August 2011, an article was written by Andrea Bartz, suggests that as well!
I have laid out these ideas as fibromyalgia= highly sensitive persons who have had acute or chronic trauma in their lives (psychological and/or physical) and have developed a hyper-aroused nervous system, chronic anxiety, and amygdala that is hyper-responsive to fight or flight tendencies. This is called central sensitization, that is, being hypersensitive to sounds, stress, weather changes, light, and many other conditions that can affect the nervous system and which develop slowly over time.
What has not yet been documented by many is why it is perceived to be more prevalent in women, or at least why it is reported more frequently by them. I developed this theory further than what I have just cited and suggest that because the majority of women in society are generally the caregivers of others and have developed highly intuitive empathetic personality traits, they are more prone to a predisposition to fibromyalgia if they are overlyempathetic. But, this is a somewhat simplistic view as many men are also highly sensitive, and the relatively recent documentation of men suffering from PTSD is now gaining more credibility. All people who are highly sensitive persons and are overly empathetic /overly compassionate, and suffer greatly fromchronic anxiety are prone to fibromyalgia. I realize that there are many men with fibromyalgia who also are HSPs.
As roles change somewhat in society and more HSP men become highly empathetic caregivers it may be that fibromyalgia will have been under-reported in men in the past. Not all caregivers are overly empathetic, but interestingly, in the hundreds of people I have interviewed either formally or informally, I have found nurses and social workers to have a high rate of fibromyalgia, particularly if they themselves have experienced severe trauma in their own lives. The key is not female vs males, but rather certain personality traits set up conditions that often result in fibromyalgia. Interestingly, I read recently that children who had a mother who was depressive had a larger amygdala than the usual size of the amygdala. Could it be that these children were raised in a somewhat unstable home situation, always on the alert, always anxious? Too early to even speculate about these new findings in the research. Even more dangerous is the idea that the mother is responsible for one more bad thing in a person’s life! Mother blaming has been far too common in the past.
I have one major differing theory about HSPs than the psychologist, Elaine Aron, and the article was written by Bartz: I do not believe that we are necessarily born with the tendency, but that it is primarily socially induced. However, neither the psychologists nor I, the sociologist, can prove this point and I am not sure it needs validation. More to the point, there is the possibility of changing the brain and establishing new pathways. Living as an HSP may be appreciated that it can be a gift, but it can also be a burden. There are numerous strategies I have described elsewhere and it is too bad that those who write about HSPs do not focus on them in order to make our lives less prone to intense sensitivity.
” Nonviolence means avoiding not only external physical violence but also internal violence of spirit” , Martin Luther King, Jr.
Violence can be defined in many ways. It is anger at its peak in the forms of shouting, yelling, hitting, sexual and/ or physical and /or emotional abuse, throwing things, or any other way of inducing fear and trauma in others. Racism, sexism, homophobia, and all the social injustices are a form of violence. It involves domestic violence, massacres, and harassment, which plague us on a daily basis. The TV gives us shots of Afghanistan, Iraq, and Libya in which war violence is perpetuated. The media and movies fill our psyches with violence, and we face it personally in our own lives. It is not a kind, gentle world. Those of us with fibromyalgia have highly sensitive natures (which I have written about extensively) and we absorb this violence regularly, to the detriment of our hyper-aroused nervous systems.
A”menschenkenner” is a German word that means “someone with a knack for figuring people out, for taking their measure”. The dictionary describes this characteristic as a person who is a judge of character; a connoisseur of nature. I believe that this trait is highly developed in people with fibromyalgia and in the presence of violence or potential violence our nervous systems respond on high alert. If we sense even the potential of violence we respond as if it was imminent. Paradoxically, when I read mystery novels that are not particularly healthy for my psyche, I find myself immersed in the inevitability of anger, rage, and physical or sexual abuse. However, I continue on this path which arouses my nervous system. However, in real-life situations, I am sometimes anticipating that anger could escalate to violence and my system goes into overdrive. Reality and fantasy evoke different emotions, but I have not explored research that explains this phenomenon. What I do understand is that people with fibromyalgia have a tendency to become fearful around those who are excessively angry people.
The question is: how do we live in a violent world and not take on the trauma associated with it? Given our highly developed characteristic of overly emphasizing others, it is not as if we have become immune to scenes, images, or sounds of violence. In fact, we can often predict when someone is about to rage and our bodies react negatively in anticipation. A simple story of someone falling, for example, can arouse in me the actual unpleasant sensation of another’s pain. Hearing a racist remark can bring tears to my eyes. Homophobic stories or jokes place me in the realm of those who are being ridiculed and my nervous system becomes highly aroused. But the more dramatic forms of potential or real anger and violence can leave me reeling for hours or days on end.
In an article by Mark Fenske in the Globe and Mail, July 7, 2011 (L6) I found answers about how we feel another’s pain. “We feel his pain. Literally”, he writes, describing a “class of brain cells called mirror neurons helps explain empathy and the contagious nature of emotions”. Further, he writes” these cells are thought to “reflect” the actions and feelings of others”. For that reason, among many others, it is important to reduce our own stress and avoid situations where anger and violence are common occurrences.
“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.
“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?
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 maneuver. 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 maneuver is described on the Mayo Clinic site and it is suggested that the person can actually try this at home.
I can attest to it being one of the worst experiences I have had in many years. The doctor did this three times, on both sides, and nausea and dizziness became unbearable, resulting in the need for a nurse to administer a Gravol injection. Thinking about this nausea and dizziness actually makes me ill again. Obviously, the maneuver did not work.
A few weeks went by and on the advice of friends, I made an appointment with a physiotherapist who specializes in vestibular issues, among them vertigo. An hour and a half visit, testing me, wearing a face mask with wires attached to a computer, he watched my eye movements on the computer (after he had determined which ear and wherein the ear the crystals were located- the horizontal part of this convoluted anatomy), then the treatment which was non-nausea inducing and only slight dizziness happened.
I had been shaking beforehand fearing the worst and relaxed as I knew he knew what he was doing. Miracles of miracles- it worked! I was told to take it easy for the rest of the day and to keep my head still neither looking up nor down for the rest of the day and sleeping on my back that night. The following day I was to test for vertigo and luckily for me this one treatment worked. He had told me that there was an 85% chance it would work first visit and if a second was needed it would rise to a 95% success rate and if a third was needed it would definitely move those crystals along! I smile now remembering waking up without fear of the room spinning.
This physio, Steve, is amazing in that he knows so much about fibro and migraines (which he believes are similar in that they are the result of people who have different ‘brain wiring’ than most others). For that reason, he handles fibro patients with great sensitivity and understanding, given our own sensitivities. I am so lucky to have found him.
But to my other ear problems. They crackle, feel like they are submerged in water, feel full, flutter and I have other odd sensations that come and go. My hearing is not good, particularly on certain days. What is to be done? So little is known about fibromyalgia that each and every symptom, although shared by those of us with this condition, is not properly diagnosed by specialists.
I try heating pads for my stiff neck, meditation, and exercise, but to no successful end. My chiropractor does give me some degree of relief, but it is temporary. On 2010/01/08 I wrote about Fibromyalgia and Hearing Loss discussing tinnitus, TMJ, and the involvement of the 7th cranial nerve. Comments from others encouraged me as I realized I was not alone. It seems this central nervous system of ours invades every avenue of the body bringing about weird symptoms!
Fibromyalgia remains a mystery to me in spite of the lonely journey I have taken to explore this strange land. I am still going up and down various paths searching for the right one. The discovery won’t come in my lifetime.
” 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 full-blown fibromyalgia. Some of us have had repeated crises in our sensitive lives and did not even experience a single unusual occurrence of the syndrome developing. 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.
I have begun to write short stories about my life, exploring the reasons why I am the way I am, an anxiety-riddled person with a tendency to overreact to any kind of stimulation which then begins the vicious cycle of pain and fatigue flare-ups. Writing these 2 or 3 pages about events in my life, for example, about my first day of school, often brings about unhappy memories. So, I have been training my mind to do something different, but in fact, it is not exactly a healthy endeavor. Or is it? The two friends with whom I shared this first day of school story had different responses to it. Each is valid. One friend suggested it was a good practice, then after I had written bad stories, I should print, tear up and discard them forever. The other friend reminded me that I have written before about reactivating the amygdala to relive a bad experience, and writing about past trauma was not a good idea.
Ah, but back to Mindfulness– living in the moment- not the past nor the future, but the here and now. That is, after all, the idea that whether I am eating a meal, driving the car, or being with friends I am just being without judgment- I am conscious of the actual moment, not reliving past negative events. I have to train my mind to do something different that is pleasing and not anxiety-provoking. It should also be repetitive and creative. Hmmm, whatever shall it be?
” 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.
