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 overstimulation and sensory processing sensitivity. Never has it been so challenging as it has been in the past two weeks with the world on the brink of disaster. 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 realization that we with fibromyalgia have certain personality characteristics in common while at the same time there are many differences among us. Personally I am an introvert while needing to be around people on my own terms. I have a lively interest in people, but no one is all one thing. Good and bad, simple and complex, happy and sad, afraid and courageous- its all a mix. But, we all have in common our anxiety, hyper-vigilance, and overly emphatic 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 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.
“After a traumatic experience, the human system of self-preservation seems to go onto permanent alert, as if the danger might return at any moment”, Judith Lewis Herman
In my book almost a decade ago, I wrote about Gulf War syndrome and the similarities between this condition and fibromyalgia. From the terms ‘shell shock’ and ‘Gulf War syndrome’ has emerged the contemporary ‘Post Traumatic Stress Disorder’ label. We have now landed firmly on the relationship between these three conditions and fibromyalgia. Years and years of studying and researching on the topic of fibromyalgia has convinced me that PTSD and fibromyalgia are the same thing. There I’ve said it! And, finally others are saying it too. What do all those terms share in common? How is it that PTSD and fibromyalgia are twined? Wars, abuse, crises, trauma of many sorts take their toll on us all, but it is the highly sensitive person whose psyche becomes over-burdened. Here are the ways in which the two conditions match:
“There is nogreater agony than bearing an untold story inside you”, Maya Angelou
A very interesting interview awhile ago on CBC Radio with Michael Enright as host. Dr. Suzanne Koven, who is a Massachusetts General Hospital Writer-in Residence and a primary care doctor, writes, teaches and speaks about the healing power of story writing. She was Enright’s guest. It has allowed me to ponder upon my own need to write about fibromyalgia and in turn for others to comment on my blogs. It becomes a shared community of those of us with chronic pain; it also allows me to reflect upon how I came to this point in life when I have finally completely accepted that I have a life long challenge ahead of me.
” You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face”, Eleanor Roosevelt
In my view fibromyalgia is precipitated by the emotions of anxiety/fear which began perhaps in utero, but more likely early in life in which a child develops a hyper-aroused nervous system. Traumatic episodes experienced in a highly sensitive person is a fertile place for fibromyalgia roots to take hold. Generally this dis-ease (not disease) begins to show its ugly face early in midlife. As a youngster this child is often said to be ‘highly strung’ or ‘too sensitive’ or ‘too fearful’. One woman I interviewed said she was likened to a ‘hot house orchid’, fragile and overly empathetic. I have yet to hear any of the hundreds of people I have either spoken with or read about who did not say somewhat the same about themselves. Tuned in to the world in a hyper-vigilant, overly caring way, the parts of the brain which can distinguish between that which is safe, or conversely fearful in our environment, is in a state of disarray. Anxiety predominates the personality of the fibromyalgia person.
“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.
“For the sense of smell, almost more than any other, has the power to recall memories and it is a pity that we use it so little”, Rachel Carson
Many of us with fibromyalgia are extremely sensitive to environmental stimulation such as loud noises, dogs barking, loud music, bright lights, frightening images, strong tastes and even certain smells which can be very provocative. While some smells are deliciously pleasant to many the same ones may not be ones which trigger happy memories for others.
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.
How to go about convincing experts and the general population that fibromyalgia is not a disease, but a Medically Unexplained Syndrome (MUS)? It is in fact, a dis-ease. It is mysterious in the ways in which it exhibits itself with a vast array of features, but the cause can be explained as an uneasy central nervous system! What is implied in that name? Generally it is ‘sore all over’. Fibromyalgia is a compilation of various symptoms such as pain, fatigue, itching, depression, digestive upsets and such a variety of psycho-social- biological challenges that are almost too numerous to cite. The onset : occurs in a highly sensitive, anxious person, with a chronically hyper-aroused nervous system, the fearful amygdala of the brain in hyper-vigilant mode, and generally, but not exclusively, is brought on after a traumatic event, such as an accident or surgery, divorce or the death of a loved one and especially such traumatic events as wars.. Its twin is PTSD. Over time muscles and subsequently joints become increasingly painful and the quality of life suffers.
Is there a type of person more prone to fibro? Well, an anxious personality is a predisposing factor. Whether or not it is a personality trait that one is born with or acquired is up for debate. The person is a ‘type’, but not all anxious persons have fibromyalgia, however the opposite is true, that is, those with fibromyalgia have a history of anxiety. The mind and the body cannot be separated and are together joined forever. It is not a ‘curable’ dis-ease, but there is life after the diagnosis. So let us lighten up a bit for a few seconds! Bright flamingos should bring a smile to our faces, even if it is temporary ( I took this picture in Paris two years ago. These flamingoes did not have fibromyalgia). The more we smile the more the nervous system tells the brain there isn’t any danger, so relax and breathe. FIBROMYALGIA IS NOT LIFE THREATENING. But, it IS challenging! What is to be done for relief?