“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.
I have now written 123 blogs on this site about almost every topic I can think regarding fibromyalgia. What has surprised me is the popularity of the 2009 one on itching! Every day the itching site is replete with many searches and comments on that blog. The agony that many suffer from chronic itching has continued to surprise me beyond anything I have read or researched about fibromyalgia. In fact, a person I met recently who has lectured frequently about fibromyalgia had not even mentioned itching on her immense list of symptoms. So, the question on my mind these days is : what can be done to educate the readers about chronic itching, apparently the most aggravating of all challenges of fibromyalgia? What can be said about that which is often called ‘phantom itching’? How can I possibly present information regarding a condition I know so little about? Bear with me folks, I am embarking on a journey attempting to break down the scientific jargon into a more comprehensive language after I have struggled through it myself. The stories and challenges of those of you suffering from chronic itch are heart breaking. I hope I can do you justice.
“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.
“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.
“People still insist on things like holistic healing and things that have no real basis in evidence because they want it to be true-it’s as simple as that”, Stephen Fry
If there is any alternate healing therapy that I have not tried over many years I don’t know what it can be. Chinese herbs, homeopathy, JinShin, acupuncture, Reiki, osteopathy, therapeutic touch, reflexology to name a few, most of them have not helped; they are not evidence based therapies. They cost me a great deal of money. They kept the practitioners in business. But, of them all osteopathy as a manual therapy was helpful as I thrive on the magic of touch, especially when the therapist is a skilled practitioner. I am also fond of gentle massage therapy, JinShin, chiropractic adjustments, and especially physiotherapy. Having a therapist who spends an hour with you, working on painful areas of your body can be extremely therapeutic. Of them all it is physiotherapy (physical therapy as it is called in the US) which has provided me with the most relief . I trust this practice the most as it is evidence based, a research profession situated in a university, sanctioned by grant giving foundations to further their research agenda. I have however heard from many who do not like to be touched and manual therapy is not for them. When I am touched by a therapist who has experienced hands it relaxes my nervous system. For those who do not like being touched by others, I recommend massaging yourself lightly as a soothing gesture. It does not cure but it provides relief and trains the brain to pause and work with paying attention to the moment rather than catastrophic-futuristic thinking which we are all prone to do.
“He’s (sic) the best physician that knows the worthlessnessof most medicines”, Benjamin Franklin
This is not a blog about doctor bashing. I have been so fortunate for many decades to have a physician who does not suggest unnecessary tests, is sympathetic , highly intelligent and comforting. Rather it is about the run around that many people with chronic pain experience as they ‘doctor shop’. Physicians do not want their patients to suffer. However, often they are stymied by the host of symptoms presented to them which cannot be explained. For that reason many people are burdened with a deluge of medical tests without receiving any concrete explanation about their condition.
“Women never have a half-hour in all their lives (excepting before or after anybody is up in the house) that they can call their own, without fear of offending or of hurting someone”, Florence Nightingale
Florence Nightingale is famous as the woman who developed modern nursing. From May 6-12th we celebrate ‘National Nurses Week’ in honour of her birthday which was on May 12th, 1820. However, her birthday is now also celebrated as ‘International Chronic Fatigue Syndrome and Fibromyalgia Awareness Day’. It is thought by many to have been fibromyalgia that Ms.Nightingale suffered from most of her adult life.
“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.
“To truly laugh, you must be able to take yourpain, and play with it”, Charlie Chaplin
This is a review of the many blogs where I have discussed the pain discourse, keeping it simple and giving us room to breathe through the suffering we experience on a day-to-day basis. It is important to understand some of the basic language and physiology of pain as we become the conquerors of these brain pathways that often lead to despair. Instead we must take a more lighthearted approach and do as Chaplin suggests: play with it.
“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 whomever 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 to 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 which 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 on-going for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?