“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!
“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?
“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.
“Courage is resistance to fear, mastery of fear-not absence of fear” ,Mark Twain
Neuroscientists can now tell us amazing things about the brain, they are the experts on the nervous system. The argument that there is or is not a ‘mind’ is no longer relevant. A mind without a brain and a brain without a nervous system is not feasible. It is the mind that alerts us to fear, which may or not be a threatening situation. It is the brain within the processes of the central nervous system that responds to this perceived danger, affecting the tissues, causing pain.
In June I attended a month in the Chronic Pain Clinic. Each day we were made aware of the importance of our own minds as we lived with chronic pain. We were encouraged to use breathing exercises to produce relaxation in order to break the cycle of pain produced by muscle tension and to relax the nervous system. Equally as important were the pacing strategies: breaking activities into small parts that were more manageable. Knowing, as I do, the personality patterns of those of us with fibromyalgia, I can say with certainty that we are high achievers and want to accomplish many tasks as quickly as possible. Pacing is very difficult for us. Self-talk was encouraged in order to practice ‘letting go’. The motto was: ‘DO-REST-DO“,finding a baseline within which we can work, stop, rest and do again. I warn the readers it isn’t an easy task practicing these strategies on a daily, almost moment by moment routine!
“In three words I can sum up everything I’ve learned about life:it goes on”, Robert Frost
I have frequently cited the works of adiemusfree from her HealthSkills Blog. She has become my guru for updates on research regarding pain. I take hope because of her personal struggles with the issues surrounding living with acceptance in lieu of catastrophising. Daily pain is exhausting, depletes our energy, leaves us with a sense of hopelessness. Each new symptom (and there are many) can be like taking one step forward and two backward. How do we continue? As she says in her October 18/15 blog: “After all, life doesn’t stop just because pain is a daily companion”. The same could be said of the other myriad of symptoms we experience.
“The itch sensation is a perception”, Dr. Zhou-Feng Chen
The most exciting research regarding itching comes from professor Dr. Zhou-Feng Chen, and his colleagues at the Washington University School of Medicine Pain Center. He is Director, Center for the Study of Itch. To quote from his biography : “Ongoing research program is centered on signalling and synaptic mechanisms of itch transmission from skin to the brain and crosstalk between itch and pain”. While it appears that the team has focussed primarily on mice, the avenue is hopeful for those of us with chronic pain and itching. His work is groundbreaking. It would seem that not only is pain in the brain but so it is with itching.
“One should sympathise with the colour , the beauty, the joy of life” , Oscar Wilde
Changing the neural pathways in the brain from ruminating about pain or various other symptoms of fibromyalgia can be achieved through various ways. I have tried two of the ‘hobbies’ that have helped me somewhat. One was sewing, (something I had never done before) by making quilts, mostly by hand! It was a difficult endeavour and costly! My hands would ache but the thrill of organizing colours and stitching them together brought me many hours of joy
The colours are what intrigued me and I searched diligently for bright fabric. I ended up making about 25 of them!
“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.