I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology.
I am married, a mother and grandmother living on the east coast of Canada.
I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
“Coping with a chronic illness is work”, Carolyn Thomas
A very new book has just been published by Carolyn Thomas: A Woman’s Guide to Living with Heart Disease, Baltimore: Johns Hopkins University Press, 2017. It is one of a kind! Finally, a book that allows the woman with heart disease or those with a family history of heart disease, to pour over it and sigh with relief as questions about the leading cause of death among women is now in print as a source of expert information. Furthermore, it is written in a style everyone can understand.
“When anxious people anticipate something bad about to happen- such as being confronted with creepy pictures of snakes or spiders- their right frontal insulas go into overdrive”, Blakeslee and Blakeslee
Many of us with fibromyalgia can remember childhood as the beginning of a life time of fear, and anxiety. Since there might have been a significant childhood episode that triggered this dis-ease called fibromyalgia, it stayed with us while other troublesome events in our lives piled these generalized feelings one on top of the other. It is as if we accumulate and store anxieties in our psyche (frontal insula of the brain) until we can’t differentiate between everyday events that aren’t fearful and those that are. We feel things too deeply. Our empathy capacity is filled to overload. We cannot respond healthily to any form of drama or excitement. While there are some of the beginning signs of this in childhood, such as a tendency to have symptoms such as fainting, hyperventilating, or to have panic attacks, it appears as though we are usually able to live a normal life until a major crisis brings us full on to fibromyalgia, generally in middle age. Rather than this being a beginning it is usually the end of the lifelong tendency headed for the finale. A central nervous system that can no longer keep the brain from responding to this build up of anxieties in highly sensitive persons is the way I describe fibromyalgia.
” 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.
” Early in life, I was visited by the bluebird of anxiety”, Woody Allen
Anxiety is the root cause of fibromyalgia, particularly at an early age, or even in the womb. So, how is one to overcome the early stages of this deep seated emotional characteristic which those of us with fibromyalgia struggle with on a day to day basis? Even more significant: how do we explain to others that the challenges of life-long anxiety cannot be overcome with those who lack empathy or compassion who suggest we just get on with life and stop complaining? It would seem as though I begin each new blog with a series of questions that aren’t easily answered.
It is fear that triggers the amygdala to release neurotransmitters. In turn the hypothalamus dumps adrenaline which causes the elevated heart rate, flushing, shallow breathing and other physiological symptoms. Fear and anxiety are two sides of the same coin. I can trace my early anxieties/ fear to anxious parenting, Catholic nuns who terrified me with thoughts of hell, a crisis of moving from a large city to a small town as an adolescent, a 17 year old who like others of the day, was used as a source of free labour in a diploma based nursing school, nursing in general, an early bad marriage, three C sections, a divorce, completing a PhD as a single parent, being stalked, remarriage with a blended family of five teenagers, caring for elderly parents, and finally a heart attack, followed by a hip replacement. Now, of course, aging has reared its challenging head. Each new crisis, no matter the seriousness, triggers the amygdala. One might look at this list and believe it is not as horrific as the life of those who suffer greater atrocities. Nonetheless, there are two kinds of people- those who thrive in acute stress situations and those who don’t. I am of the latter kind of persons, born as a highly sensitive person.
” There are many other (besides testosterone) behaviour-eliciting hormones fundamental for human well- being, including estrogen and progesterone in females”, Carl Sagan
The question arises about why fibromyalgia is more prevalent in highly sensitive women and men. The debate about nature/nurture has not yielded specific answers and for awhile I have thought of it as a moot point. As a nurse/sociologist I have leaned toward the impact of the social environment in early childhood. But, as some science in human sexuality suggests there is a relationship between levels of testosterone in utero and the extent to which specific traits are manifested after birth. I am now even more confused. However, I continue to believe that both what happens to the development of the fetus and afterwards in the environment are both relevant, although to what degree each plays a more significant role may never be known.
“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.
“With hypnosis, we can help people modulate perceptions in ways that are therapeutically helpful”, David Spiegel
For those of us with chronic pain and/or a myriad of other distressing physical and psychological conditions the practice of ‘changing our brains’ through relaxation and exercise regimes can be overwhelming. Mindfulness meditation is one way that we can work with our minds to improve our daily lives, but it takes time and discipline. What if there is a quicker way for therapists to teach us how to bring about relief from those challenging symptoms of fibromyalgia such as pain,and chronic fatigue? The medical community is finding that hypnosis can be effective in that regard, although to this point there is little, if any evidence based research on the effects of hypnosis for those of us with fibromyalgia. Nonetheless, it sounds promising.
The nomenclature of Fibromyalgia can be known as : “Central Sensitization”, “Post Traumatic Stress Disorder” , “Cycles of Over-Exertion-Relapse”, “Chronic Fatigue Disorder”, and now a new term: “Systemic Exertion Intolerance Disorder”- all with the same characteristics. What’s to be done so that we can explain ourselves to others while so many labels of these invisible syndromes abound? In fact, do all these terms mean the same thing? Are they bio-psycho-social in nature yet present with symptoms that are almost identical? The more I read, live with, and experience these conditions the more certain I am that they are linked under the umbrella of “medically unexplained symptoms”, referred to as MUS. It appears to me that there is less understanding of the linkages than ever before as new labels appear. How can we separate the ‘bio’ from the ‘psycho’ ‘social’? Are they all neurological conditions?
“I base most of my fashion sense on what doesn’t itch”, Gilda Radner
There isn’t anything more comforting to me than cloth that is soft and soothing. Mostly, it is cotton that gives me a feeling of being in a cocoon. Since the most popular blog on this busy website is about itching it has brought to mind the ways in which we can reduce the itching and scratching (the “Itchy & Scratchy Show” from the Simpsons is brought to mind) of fabric that does not bring comfort.
As an effort to “change my brain” regarding pain, I followed the advice of experts many years ago and took on a project which was creative and new to me. In addition it is somewhat repetitive, also part of the triad of characteristics that make up this endeavor. Quilting was my choice of a new project/hobby. Never a sewer it was indeed a steep learning curve but it brought me into the realm of fabrics.
“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.
” When things get really bad, just raise your glass and stamp your feet and do a little jig”, Leonard Cohen
As I have been limping along these past few months following hip surgery I began to have foot pain, a condition I had never had before. I was speculating about the cause. Too little walking of late? Plantar fasciitis? Shifting from soft sponge shoes (GoWalk) to sneakers which are heavier? Shuffling after the surgery? The possibilities are endless. No one can tell me what the issues are that inhibit my walking and cause almost shock-like pain in arches and the top of foot.
“Courage is resistance to fear, mastery of fear-not absence of fear”, Mark Twain
All of us with fibromyalgia suffer from repressed emotions, and are coping with over stimulation and sensory processing sensitivity. Never has it been so challenging as it has been in the past months with the chaos in the world that we hear of almost none stop in the media. What is to be done? We can’t continue to watch the news on a regular basis without feeling the brunt of world wide fear, anxieties, hatred, rage, and turmoil. We also can’t hide in isolation from outside influences. We are situated betwixt and between our own personal lifelong anxieties and fearful for the volatile and chaotic nature of current politics.
I have grappled with the knowledge that we with fibromyalgia have certain personality characteristics in common while at the same time there are many differences among us. Many of us are introverts while needing to be around people on our own terms; we crave peace and quiet. Others are extroverts and at the same time are easily over stimulated. But, we all have in common our anxiety, hyper-vigilance, and an overly emphatic, highly sensitive nature. For those reasons we are sensitive to injustice. We are intuitive about the good and the bad in others and quick to judge ourselves, particularly if we believe we are not courageous. We live in fear we will be found lacking in strength of character, deriding ourselves over even mentioning our chronic symptoms of pain and fatigue.
“I think people needto be educated to the fact that marijuana is not a drug”, Willie Nelson
Well, here I am in the second month of experimenting with this wondrous herb. It isn’t easy trying to find the right mixture of THC to CBD that fits me! Medical marijuana is not to be considered as one size fits all. In fact, I am not sure I have the right times of day with the right amounts of each of the ingredients completely suited to me even now after two months. It has been trial and error. But I have been aided by my family physician and the very well informed members of the National Access Cannabis clinic. The choices are mine and it involves reading, understanding and recording how each process is helping (or not). It is winter, cold and depressing as I struggle with hip and back pains combined with fibromyalgia and sleep issues. My brain seems frozen in this ice block.
“There is a crack in everything. That’s how the light gets in”, Leonard Cohen-Anthem
Cannabinophobia has resulted in a frenzy of political, medical, social and cultural chaos for generations in spite of the fact that this herb has been around for 38 million years. Prohibition against cannabis usage has resulted in billions of dollars spent trying to stop its usage; hundreds of lives have been destroyed because of arrests, labelling them as criminals while governments have wasted their time trying to contain its widespread recreational use. But, it is medical marihuana specifically that I am the most interested in and as Backes has written: “The way to approach cannabis as a medicine is to do so cautiously, despite the fact that human beings have been using medicinal cannabis for millennia”, (Backes, p.26, 2014). Physicians cannot prescribe but can authorize the use of cannabis. However, some physicians will not even do that in spite of the patient’s pain and even worse in cases like multiple sclerosis where it has been shown to help with spasms, many will not even authorize it! For those of us with fibromyalgia and other chronic pain, as well as other conditions such as multiple sclerosis, waiting for the legalities to be sorted out means that we are expected to wait until the hysteria has subsided.
“There’s someone in my head, but it’s not me”, Pink Floyd
Just as I thought that I had nothing new to write about I have discovered that the weird ‘brain’ sensations I have, which only lasts for moments, are common among those of us with this frustrating condition of fibromyalgia! I have had these peculiar short lived experiences that are followed by dizziness for several years now. The episodes are almost like a small temporary memory loss, almost feeling faint-like. I don’t have the language to describe them. It is as though my skull almost empties for a few seconds. It is somewhat creepy to imagine a skull without a brain.
Many have written that coming off a medication brings about these zaps/pings/shocks/memory loss/dizziness occurrences. But, I have not come off of any medications. Still, I have read that being on Gabapentin can cause them. I do take 300 to 400 mgs per day. Is this what is causing them? The attacks aren’t too frequent but certainly do cause slight dizziness and loss of balance. I have often had electrical shocks throughout my body- this isn’t the same thing. I have written about ‘brain fog’ several times – again, this isn’t exactly the same thing. I have had vertigo- it is different from that as well. I wish I had the language to describe the episodes. It’s as though my brain loses a second or two into the air, is not in my own body!
“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?
“Pain is real when you get other people to believe in it”, Naomi Wolf
As I have frequently written there are two kinds of pain: noiciceptive and neuropathic. Those of us with fibromyalgia suffer from the latter. It is the most difficult to live with as it is long term damage to the nervous system that has become chronic. It cannot be treated with opioids long term as it only gives temporary relief. Many find some degree of effectiveness with Gabapentin ( I do) or Pregabalin.
So many readers write of their pain challenges , often resorting to opioids which result in addictions. However, noiciceptive pain such as I had recently from a hip replacement does produce relief from such medications. Burns, operations, broken limbs, usually all of a temporary nature, are examples of this type of pain. But, I quickly found that my highly sensitive pain receptors as a result of sensitization of the Central Nervous System rebelled and did not tolerate the morphine I was prescribed after surgery. Nausea was the side effect I suffered with, resulting in switching quickly to Tylenol. The pain from the scar has ended. This was noiciceptive pain.
“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?
” Patience is a conquering virtue”, Geoffrey Chaucer
So, the hip replacement happened almost three weeks ago. I had hoped that when I took my first step post operatively I would not have pain. So many people told me that would happen. I should have known better. Of course there is still pain. It is too soon for me to know the nature of it. Is it fibromyalgia? The scar? The hip itself? I thought I was the expert of my own body but it has now had an assault of a different nature. I believe I will have a handle on it in a few more weeks. For now, I am trying to live every day in a slower manner. At first I rushed through walking, stopped using the walker too soon and developed shin splints. It is my misfortune I am not patient and calm. I have learned even more about this highly motivated personality of mine. Are all of us with fibromyalgia this energetic type who suffers because we rush through life?
It is a beautiful summer day with a slight breeze. Time to heal.