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 the depth of winter, I finally learned that within me there lay an invincible summer”, Albert Camus
Those of us with fibromyalgia live with chronically hyper-aroused central nervous systems. We should not be subjected to living with threats to our emotional and physical well being. Catastrophic thinking brings about more pain, anxiety, and fear. The news these past few days has the power to either overpower us or bring about hope that there is the possibility of a more calm, sane world.
“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.
This year has been a dreadful one. It all began in January with extreme cold, followed by leaks in our house from ice dams on the roof and long delays until house construction was able to be done- in fact, not until summer! All of this curtailed my mobility as the ice prevented me from walking, and my chronic bursitis in left hip, plus femoral anterior gliding syndrome of same hip aggravated my movements in spring and summer. Long month of June was spent at the Pain Clinic which was actually exhausting, July house repairs, August extreme humidity, followed by a procedure in the hospital x-ray department for cortisone injected directly into the hip joint. Pain, pain and more pain has plagued me this year. Anxiety and lack of exercise has affected my weight. I need to write this down so that I can pull myself up and begin again, after all, what else is there to do, but to look back and sigh?
And now for a spot of levity: seated at the waterfront in a restaurant with friends, a sea gull pooped on my head and in my food. My thought at the time was this took the prize for how I have been feeling about 2015! I think it was Jonathan!
“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.
“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.
“The welfare of each is bound up in the welfare of all”, Helen Keller
I have had two different experiences of being in a group of people where there has been a focus on chronic pain and in one session, outside of my home country, where the presentation was strictly about fibromyalgia. The interesting phenomenon I observed within myself was that the more that was spoken by either the group leaders or the people with the pain was that I personally began to feel more pain and that it was difficult to let go of it. I once again thought through what I had written on earlier blogs that the neural pathways that I have created in my own brain were easily reactivated when I thought of pain or other symptoms of FM. This is somewhat akin to PTSD, that is, the episodes are easily triggered by certain memories or events; the brain just can’t stop remembering.
But does that mean that support/ information groups are not effective? As far as information gatherings these groups can or cannot be helpful. If the information is accurate and does not precipitate bouts of pain (or other symptoms) then they are indeed worthwhile, especially if there are helpful suggestions about what can be done to self manage.
“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.
“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.
“Everything that is done in the world is done by hope”, Dr. Martin Luther King Jr.
Happy International Women’s Day!
It is almost Easter and after the horrendous winter weather I (and thousands of others) have experienced I am anxious for the ice and snow to leave so that I can become more mobile. I don’t know if that will happen. My fibromyalgia legs and hips have become a challenge that have plagued me for the past year. Sleepless nights, pain upon stair climbing, medications that I fear are not good for me have all resulted in increased anxiety. But without hope what is there? I am working on optimism as my mantra rather than the usual gloom and doom I am noted for. Who can look at flowers and not believe in hope for a better day?
“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 (FMS) I awoke several times last night. During these 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 this 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 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?