” What I want for my fans and for the world, for anyone who feels pain, is to lean into that pain and embrace it as much as they can and begin the healing process”, Lady Gaga
There has rarely been such public awareness of fibromyalgia as there is now that Lady Gaga has become public about her own suffering. While there are thousands of those of us who suffer from the debilitating pain and fatigue of this syndrome, many still believe it is malingering.
” To let go is to release the images and emotions, the grudges and fears, the clingings and disappointments of the past that bind our spirit”, Jack Kornfield
In the newspaper today there is an editorial written by Jane Brody titled “More specialists explore treating pain without drugs” (The Globe and Mail, L5, September 15, 2017). She cites the conditions that drug free options for pain can help with, such as fibromyalgia, news of which was published last year by Richard L. Nahin in the Mayo Clinic Proceedings.
“You can’t stop the waves, but you can learn to surf”, Jon Kabat-Zinn
Several years ago I was privileged to take the Mindfulness-Based Stress Reduction course, not once, but twice from a wonderful therapist. To practice what I learned requires discipline and daily/moment to moment awareness. Unfortunately, after several crises, real and/or imagined, I recently let what I had learned fall by the way-side, but sensibly have begun to incorporate the strategies into my life once again . It is like pulling on an old comfortable sweater when I stop myself from allowing my rambling thoughts to have power over my daily living.
Today I read the article by Alan Green in Mindful magazine. It is in the August, 2017 edition.
“To conquer fear is the beginning of wisdom”, Bertrand Russell
I believe that those of us with central sensitization, that is, fibromyalgia and chronic fatigue , or to call it by another name -“post traumatic stress disorder”, all suffer from chronic anxiety/ fear. These terms are , in my view, interchangeable. They can keep us imprisoned without recourse and in a state of hopelessness. In fact, the US Department of Health and Human Services has developed a new name which can even be part of our repertoire, that is, “Systemic Exertion Intolerance Disorder”. In short, more diagnostic criteria are available for health professionals who are interested in tagging us. It is true that we have little energy along with our other challenges, but are we just a collection of symptoms?
For almost a decade now I have been writing about how those of us with these conditions ( read: condition) have options regarding a better quality of life. Yet, in spite of my preaching I find myself, like others, often recounting yet another symptom of central sensitization almost ignoring the gestalt. Note for example the hundreds of comments or ‘hits’ I have on the two most popular blogs of 1) itching and 2) tingling and numbness of arms. One would never have imagined that these two symptoms would be so problematic! Yet, those of us who suffer from specific symptoms focus on them often to the exclusion of what can be done to improve our daily lives.
“People are made happy by one thing and one thing only-pleasant sensations in their bodies”, Yuval Noah Harari
What is happiness? Sometimes I think I have been seeking it my entire life and it still often eludes me. I want to be happy. I have worked at it. I meditate, have done yoga and chi-gong, I even have coloured in books (the newest craze), made quilts and listened to joyful music, all said to enhance creativity which is thought to be integral to being happy. When I was young and religious I prayed. It made me fearful, not happy. I have looked at amazing skies, October foliage, a calm lake and enjoyed their beauty, but I do not often experience the peacefulness that happiness is said to bring. Is the feeling of being at peace the same as feeling happy? Some of the happiness experts say that if you smile often enough it will entice your brain to believe you are happy. I smile often when around others and many would consider me happy. Maybe, then, I do experience happiness, which differs from peacefulness. Perhaps it is so fleeting that it escapes my attention?
“The traumatic moment becomes encoded in an abnormal form of memory, which breaks spontaneously into consciousness, both as flashbacks during waking states and as traumatic nightmares during sleep”, Judith Lewis Herman
Trapped in our psyche, past traumas wind themselves into the body and present as a multitude of physical symptoms. Pain, extreme crushing fatigue, intestinal difficulties, severe itching, rashes, tingling of limbs- the list seems endless. We seem not able to control our anxiety about when or which kind of bodily experiences will be next. We are constantly on guard, judging past and possible future symptoms… was this pain the same a few minutes ago? Will it become worse? If I do this or that will it harm me? What is this new symptom about?
“As I get older, I just prefer to knit”, Tracy Ullman
In the Canadian Globe and Mail , Thursday, February 18, 2016, L5, featuring an article by Jane Brody, we read about the benefits of knitting as therapy. In fact, large studies have been done with thousands of knitters extolling this activity and other handcrafts. It is said to ease stress, that it helps with anxiety and depression and even chronic pain. Life coaches, occupational therapists and psychologists are introducing their clients to the joys of taking up the needles.
Within the last two decades the concept of mindfulness meditation has been adopted by schools, hospitals, businesses, police and even the military. Those who teach/mentor MM to people in the huge business of organized sport, the corporate world, the military, no doubt live with some degree of contradiction in their lives. It is not a practice which is focussed so much on ethical issues in big business or professional sport (considered by many to be legitimated violence as in many sports such as boxing, football, hockey and is integral to commercial enterprise , with an emphasis on competition and a ‘killer’ instinct). Too, many are amazed that military personnel who are taught about killing would benefit from MM, but those who suffer from PTSD , the after effects of their experiences, could be helped greatly from their difficult military experiences. I have likened PTSD elsewhere to fibromyalgia sufferers. It is what was once described as ‘shell shock’. Who better to be taught a contemplative practice to help ease the burden of their flashbacks? Police and military personnel have jobs that are necessary to society and having resources to them that allow a mindful approach to their daily lives is paramount.
None of this is to say that those who are professional athletes or in the corporate world are not worthy of learning about ways in which to develop more empathy for themselves and others. Empathy and compassion are integral to MM. No one ‘owns’ this individual practice. While mindfulness is not regarded as a practice that has a political agenda it is seen as a way of listening to oneself as well as to others. In an indirect way it can help with the current chaos and despair that permeates societies in this century with an emphasis on less aggression and anger. MM won’t save the world from the many wrongdoings of the corporate world or the military machine complex and its wars (but it can be of great help in peace keeping). In schools of various kinds , especially with children, in the field of medicine and health, and most directly in our own personal lives, no matter how we chose to live them, quietly contemplating our thoughts and actions can have a profound effect on society. The toll booth ticket takers, cleaners, garbage collectors, computer analysts, farmers, nurses, secretaries, doctors, teachers, volunteers, housewives and house husbands, day care workers among thousands of other people are all subject to various kinds of anxieties and fears.
“We don’t see things as they are, we see them as we are”, Anaïs Nin
One of the common sayings in Mindfulness Meditation is that thoughts are not facts. In the chronic pain clinics we are told that hurt does not necessarily mean harm. B.K.S Iyengar, a yoga master, says to think light and feel light. But what are we to do when we are in a state of high arousal, waiting for disaster to fall, whether it be in the form of new symptoms or the same old ones we have become accustomed to over these many years? How are we to reduce the amount of anxiety and /or trauma we live with everyday?
There are many strategies that one could employ but key is to keep watch over our breath. Breathing is key to meditation, yoga and living with chronic pain. A state of mind is crucial to living a life of ease (somewhat) in spite of the daily challenges we face with this condition of fibromyalgia. We are told to be vigilant about our breathing and it is well documented that we are people who hold our breaths when thoughts become fearful. It is our minds that are in need of reassurance that the worst is not to befall us.
“My own brain is to me the most unaccountable of machinery-always buzzing, humming, soaring roaring diving, and then buried in mud”, Virginia Woolf
To live a life in a state of high anxiety, boarding on panic, is common among those of us with fibromyalgia. We anticipate pain, fatigue, muddled thoughts, and a myriad of other symptoms almost every waking (and sleeping!) hour. It has become a habit that often seems unable to be broken and depression and fear set in. Often accompanying this is the brain fog, the confusion that often does not allow us to focus or to think clearly. Some describe the sensation as “fuzzy brain”, “spaced out”, “dreamy”, “brain farts” or just plain forgetfulness.Whatever the label those of us with the condition know it is often accelerated by over stimulation, lack of sleep, pain, stress and anxiety. The new medical term is now “dyscognition“. It would seem that the brain has difficulty in responding to stimuli because of a hyper-aroused central nervous system, a phrase I keep repeating over and over again in my many blogs. These habits of the brain are strong and require discipline that is challenging to break free from since they have accumulated over many years. Stress and all that it encompasses is, in my view, a main culprit.
“After a traumatic experience, the human system of self-preservation seems to go into permanent alert, as if the danger might return at anymoment” , Judith Lewis Herman
There has been a great deal of public awareness of late regarding the concept of Post Traumatic Stress Disorder. It seems as though the syndrome has become somewhat commonplace and many are quick to self diagnose. But, even more are recognizing that the condition is one caused by great stress and chronic anxiety and there are commonalities among us in our responses to traumatic experiences. What was once associated with abuse, now is believed to be the result of many occurrences that bring about dramatic memories, which in turn trigger danger to an overly stimulated nervous system. With the relatively recent wars in the Middle East whereby PTSD among veterans became all too common, public awareness has been heightened. In my book I discussed fibromyalgia in relation to what was then becoming known as Gulf War Syndrome, now it is more specifically known as PTSD that is capturing the attention of the experts. In the first world war it was known as shell shock. In the second world war it became known as battle fatigue, finally it is now more appropriately labelled as PTSD. Many of these veterans with PTSD have fibromyalgia, in fact I speculated then (and do so now) that they are one and the same thing. I will acknowledge there is the possibility that they are somewhat separate but akin to identical twins. The symptoms are identical.
“Your brain is the command center of your body”, Daniel G.Amen
There are about 100 billion neurons within the nervous system ; the neuron is the basic working unit of the human brain. Just imagine that! All these little neurons (cells within the nervous system) communicate with one another to transmit information through a complex web to other cells. The chronic pain that we fibromyalgia sufferers deal with on a daily basis is produced by our brain from these neurons. Ah, but we can control this pain, if we remember control rather than eliminate! So, what have researchers found about how this can be done? What can we do to take charge of these neurons that seem to be in a constant state of firing off messages of pain? There are, in fact, several strategies that seem promising, but only one will be discussed here, as its relationship to Mindfulness Meditation is another which I have discussed in depth over the years. In my view the two are closely related.
A popular approach to pain management is a form of therapy called ‘Acceptance and Commitment’. Primarily this means an acceptance that one does have pain, it is chronic, and yet to go on to engage in those things in life that gives one pleasure. In short, it is a commitment to pleasurable activities by not engaging in negative thoughts about the pain, what caused it, and all memories of the past experiences of this pain. This kind of therapy, in my view, can be as effective through Mindful Meditation. It is possible to change the brain through discipline and consistent letting go of the thoughts that reinforce the feelings associated with the pain. The brain, after all, is plastic (“neuroplasticity”, which I have discussed so often in other blogs) and can change. That doesn’t mean the pain will go away, but rather it is an acceptance of it and a commitment to live life to the fullest by exploring the thoughts that arise in relation to the feelings and a willingness to accept what it is (again my favourite quote : “it is what it is”). An example that I use while meditating is this- I tell it I haven’t the time to think about it right now. I say ” I will make an appointment with you (the pain) later on, but for now I am letting you go from my thoughts”. It may sound hokey but it does work. I wish I could say that I am always successful with this strategy, but of course it doesn’t mean the pain has disappeared. Rather, it helps me to live life as fully as I can accepting my dis-abilities, rather than giving in to hopelessness. It is giving those little neurons a message to take to the brain that is less anxiety provoking.
I have brought on another pain attack- again! I have overdone it with social situations that have caused anxiety and resulted in overstimulation! This time the pain in my left foot is excruciating. The reason? I wore something other than the sneakers that are my daily companions. No, I did not wear high heels, but nonetheless they were not my regular footwear. There are many times I think I have to wear something on my feet that are a bit more dressy. Yet, I am now known to wear funky sneakers to most places, so why do I conform and wear ‘regular’ shoes when I know my body will rebel? Given that my muscles (like all of us with fibromyalgia) have become weakened over the years because of my inability to sustain regular exercise, I have found that supportive shoes are the best answer to stability. For that reason I have recently chosen to brighten my days with coloured sneakers that bring a smile to most people. But, without them my legs and feet are painful.
” Most of us have unhealthy thoughts and emotions that have either developed as a result of trauma or hardships in their childhood, or the way they were raised”, Steven Seagal
It would seem that those of us with fibromyalgia have developed the condition at an early age which may have taken a tremendous shock, accident, or crisis to bring about a full blown fibromyalgia. Some of us have had repeated crises in our sensitive lives and did not even experience a single unusual occurrence for the syndrome to develop. Nonetheless, we are a group of people with specific personality traits that allow us to dwell on trauma that seems to be stuck in our minds/brains reactivating the experience more frequently than is healthy. So, how in fact can we find ways to train the brain to refocus away from past trauma? The work of Dr. Richie Davidson, neuroscientist, has presented us with the interesting option of “spending as little as 30 minutes per day training our minds to do something different” (p.52 Mindful August 214) which can result in changing the brain. To that end I had decided that quilting was not the answer as I had previously tried that and not had much success (see blog Fibromyalgia and Multitasking, May 17, 2009). Instead I would try my hand at writing about personal issues.
“My anxiety remains an unhealed wound that, at times, holds me back and fills me with shame-but it may also be, at the same time, a source of strength and a bestower of certain blessings”, Scott Stossel
I believe fibromyalgia is an extreme case of prolonged anxiety that began in early life, perhaps in utero, or is even genetic. Furthermore, the concept of a ‘highly sensitive person’ , Elaine Aron’s works of several decades, has changed for me to also mean the highly anxious person, that is, the two are interchangeable. Having just read both Smith’s Monkey Mind and Stossel’s My Age of Anxiety memoirs with his science and historical account of anxiety, I have become convinced that fibromyalgia is another word for heightened anxiety in a highly sensitive person.
“Open your heart to your suffering”, Toni Bernhard
There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’ (a term I am unashamed of borrowing from Carolyn Thomas- www.myheartsisters.org). Often thought of as malingering, hypochondriac, weak, attention seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system which cannot sustain itself in a healthy manner any longer. It is as though we have over stretched the central nervous system just as a rubber band might become less elastic after constant over stretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal . In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue and myriad of other symptoms with which we are faced.
Reading the comments that are posted in the 99 blogs (this is number 100!) 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 cured of 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.
“Doctors are men who prescribe medicine of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing”,Voltaire
Those of us with chronic conditions are constantly seeking relief from the myriad of symptoms that make our lives very challenging. Pain, fatigue, lack of physical abilities, sleep disturbances, depression, rashes, to name but a few of the minor to serious struggles with which we are faced lead us to desperately wanting relief in the form of medications. Living with any one of the daily distressing symptoms affects our quality of life and it is little wonder that we seek help in the form of chemicals to help us get through the day. Many, in fact, are essential to our conditions without which we could not survive. Others are prescribed from the sheer frustration of physicians who want to help but medical answers to many perplexing conditions are not yet available to them. Such is the case with fibromyalgia. What to do with a patient who has chronic pain but to prescribe a pain medication, that may or may not help? If the patient cannot sleep there is a solution: sleep medication. Depression and anxiety? Medications for altering moods.The list of medications for all sorts of conditions is limitless. Pharmaceutical companies are big booming businesses whose profits know no bounds.Physicians could not possibly remember the vast array of information that the drug reps tell them about their efficacy or that they learn about on line. More to the point ‘new’ diseases and conditions are constantly being ‘discovered’ for which new drugs must be invented. Read : The Medicalization of Everyday Life by Thomas Szasz, a psychiatrist, whose work in mental illness was compulsory reading for me as a medical sociology student in graduate school, many years ago.
“Pleasure is oft a visitant, but pain clings cruelly tous“ , John Keats
Living with fibromyalgia, heart disease, asthma, arthritis, COPD to name but a few chronic conditions, is often overwhelming; it is little wonder that anxiety, panic and often depression accompany our everyday lives. The myriad of symptoms such as pain, fatigue, and/or breathing difficulties pre-occupy us and curtail our activities of daily living. The stressors we endure on a constant basis under ‘normal’ circumstances are exacerbated once we have become labelled with a particular diagnosis. We are daily inundated with messages of fear, gloom and doom: wars, unemployment, bombing, climate change, poverty, racism, sexism, homophobia, fast paced technological living…the list is endless. With at least one debilitating health condition to contend with we have an increase in our stress levels. What is to be done? What is to be done with those of us who face living with serious conditions that can inhibit a good quality of life and seem to require constant vigilance ? There isn’t an easy answer and we usually have to become the experts of our own lives. While vigilance is an appropriate response to our health issues, it is hyper-vigilance that can be debilitating as this is a major stressor.
“Memory, the warder of the brain”, William Shakespeare
It has been a long and interesting journey beginning with my book in which I laid the foundation about why women are more prone to developing, or at least reporting FMS, and my conclusion that it is actually caused by an over-aroused nervous system. However, while this was the first step, and the primary one, more has been revealed to me and I am very excited over the unlimited hope there could be for us all. I still don’t have all the answers and it may be that I am presenting information that is not quite accurate, but it has been a steep learning curve and requires much un-learning, which is said to be more difficult than learning. It all began with my physiotherapist, Nick Matheson who brought me to a path which I had never travelled down before, that is, to explore the relationship of pain and the brain, rather than looking simply at fibromyalgia as the result of a hyper-aroused nervous system.
“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people”, Thich Nhat Hanh
Since I am convinced that fibromyalgia is the result of a hyper-aroused nervous system, I wish I knew for certain if it is caused by early inadequate parenting by our parents and/or difficult childhood experiences in highly sensitive persons, or if we are born with highly sensitive nervous systems. I have my hunches, built upon numerous interviews and talks with many people (mostly women) over many years. In particular, my view is built upon my own experiences. Therefore, I will go out on a limb and suggest that we are not born with an easily aroused nervous system, but rather it slowly develops over many years as a result of our early socialization . Yet, even saying such a thing brings up the issue of children with fibromyalgia. Maybe, just maybe, they were born with the pre-disposition to this condition. What a dilemma! More questions than answers once again. Maybe it can be both nature and nurture. Parent blaming has become something of a modern day occupation. That is certainly not my intent. Who among us had perfect parents or are ourselves perfect parents?