It has recently come to my attention that there is another condition that is commonly found in a number of fibromyalgia patients. The condition is called “postural orthostatic tachycardia syndrome,” P.O.T.S., also known as postural tachycardia syndrome. The condition is caused by a change from the supine (face down) position to an upright position causing an abnormal increase in heart rate. The increase can range from 30 beats per minute for adults to an increase of 40 beats per minute for people ages 12 to 19. There is no change in blood pressure. Symptoms are relieved by reclining.
Common symptoms of this syndrome are fainting, lightheadedness, headaches which can be migraine, chronic fatigue, sleep disturbances, palpitations, chest discomfort, shortness of breath, weakness, and blurred vision.
There appears to be a significant relationship between this syndrome and chronic fatigue syndrome in as many as 50% of the cases. Because of this relationship this health condition is therefore considered an additional problem that fibromyalgia patients must consider and deal with.
The bad news is that the mechanism of POTS is poorly understood. Genetics likely plays a role. It can be triggered by a recent viral illness, physical deconditioning, or chronic fatigue syndrome. POTS may also be triggered by secondary conditions including chronic diabetes or gastrointestinal disorders.
Treatments should begin with non-pharmaceutical forms including increasing water intake (8 to 10 cups daily) and increased salt unless a blood pressure problem. Large meals usually worsen the condition. Smaller meals, no alcohol, lower carbohydrate consumption, reduced caffeine are all suggested natural treatments. Reduced exposure to extreme heat, a problem for those living in Arizona, along with reduced physical activity should be part of your treatment.
As of 2013, no medication has been approved by the U.S. Food and Drug Administration.
Prognosis is good when managed appropriately with the suggestions already mentioned. Often symptoms improve within five years of diagnosis and many return to their original level of functioning. However, if POTS is caused by another condition, it depends on the prognosis of the other disorder.
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, and the military, no doubt live with some degree of contradiction in their lives.
It is not a practice that is focused 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, and 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 peacekeeping). 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 househusbands, and daycare workers among thousands of other people are all subject to various kinds of anxieties and fears.
The journal Mindful is one that presents the practice in a variety of settings and is a valuable source of information regarding issues of MM.
What exactly is so easy, yet so difficult about being mindful and practicing mindfulness meditation? If someone was disciplined to ‘sit’ quietly for a few minutes each day and gradually increase the time to 20 minutes on a daily schedule it is believed to actually change the neural pathways of the brain. I have written many blogs on this site encouraging readers to embark on this journey so I beg the reader’s forgiveness for repeating myself once more.
Many have asked me about the difference between meditation and mindfulness. I am far from an expert on the subject and have struggled with the concepts over many years. I am not diligent about daily meditation sitting but I am getting better at reminding myself on an almost hourly schedule to bring attention to my thoughts and focus at that moment on my breath.
Can one incorporate mindfulness andmeditation? How is that accomplished? They are in fact the same thing, but being mindful is not just about sitting quietly while allowing our thoughts to come and go while labeling each of them ‘thinking’ and then turning attention to the breath.
Being mindful is practicing the art of ‘living in the moment—while eating, dressing, brushing our teeth, cleaning the house, attending a meeting, playing an instrument, writing on this blog …any of the daily activities of living. Many years ago I took a contemplative photography course which changed my view of photography as an art. To stop, breathe, and think of the subject matter in a deliberate way was an extraordinary experience.
It is not just sitting quietly meditating for a few minutes each day. It is an awareness of what we are doing on a moment-by-moment basis. THIS IS NOT AN EASY TASK! Many are confused by the label of mindfulness meditation but many more are challenged by the process itself as it is so difficult. One cannot say “There! I’ve meditated for twenty minutes, now I’m finished for the day”. Meditation does not become easier, nor is there a ‘good’ or a ‘bad’ experience of the practice…it just is.
Thoughts are constant and meditation is not to suggest that we can ‘stop’ thinking as it is ongoing. But for those of us with ruminating anxious thoughts meditation can be a way of looking at ourselves through a different lens. It is a way of paying attention, on purpose, moment to moment. We can learn to have self-compassion, to be nonjudgmental about our thoughts, and to make friends with our minds rather than struggle with fear, depression, anxiety, anger, and other negative and frightening emotions no matter what our lot is in life.
However, I want to point out that for those privileged by not suffering from racism, sexism, homophobia, classism, poverty, or ageism every day their lives are often (but certainly not always) less fraught with challenges and struggles. Still, even the privileged among us suffer from anxieties and depression and can be subject to fibromyalgia. Mindfulness meditation does not cure anxiety or depression. It allows us the space to not struggle against it.
The chronic anxiety of fibromyalgia can be helped with a program called ‘Mindfulness-based Cognitive Therapy’ which has been found to be extremely useful. The goal is to help the person to focus less on reacting to incoming stimuli and to accepting them without judging and without struggling against them. fMRIs have shown that practicing mindfulness meditation increases activity in the prefrontal cortex of the brain and brings about greater self control.
MBCT programs have become highly regarded as effective for people with anxiety and depression. It is a form of therapy that incorporates mindfulness and meditation (please note I am uncomfortable about separating mindfulness and meditation).
I have called my anxiety by name. She is “Hortense” and I chide her often. I say:” Don’t come back for a few hours, ok? I will listen to you then but for now I am not ready. I need a time out”. Sometimes I laugh at her as she is working hard to bring frightening thoughts to my mind. Hortense is the name of a beautiful flower.
How can something as beautiful as that send me into a catastrophic thought? For me, meditation focuses on the quiet. It is about hearing. It is: “The Sound of Silence”. It is about hearing our own minds and practicing to hear the voices of others. I think of these lines: “People hearing without listening” (lyrics by Paul Simon, recorded in March 1964, “The Sound of Silence”).
We hear our minds, but we often don’t listen. We need silence to do so. TVs and radios constantly blaring, phones ringing, computers and smartphones being attended to almost minute by minute do not allow us to hear ourselves. The world is filled with noise pollution. Fibromyalgia is basically a hyper-aroused central nervous system. Noise is a huge trigger for those of us subject to this malady. Quiet is soothing to our sensitive selves.
Mindfulness can be practiced in a waiting room, on a bus, waiting in a cashier’s line, or anywhere. Could this woman be meditating?
*photo of this painting from the private collection of a friend. It is an untitled oil on canvas 36×24″, Evgenia Makogon (artist), 2004.
Do read many of the books, journals, articles, and websites, or listen to podcasts or CDs on Mindfulness Meditation. The experts are many. But, it is not just theirs; MM belongs to us all if we chose to incorporate this gift into our lives.
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 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?
I have been thinking a lot lately about the many, probably hundreds, of hours and money I have spent on various approaches to help my aching, painful body cope with chronic pain. Pharmaceuticals have not helped much. Psycho-therapy has helped somewhat.
I have tried so many of the manual therapies and now, in hindsight after years of searching, continue to look for one or another to help me live with this demon in a more comfortable way. Let me list a few professionals who have tried to help and present my own analysis of their effectiveness for me personally:
Massage therapy: In Canada, we have very strict guidelines for who can become a Registered Massage Therapist. Their educational system consists of a two-year program and they must pass difficult standardized exams before they can qualify to practice as RMTs. Their knowledge of Anatomy and Physiology is extensive.
Many of their clients suffer from chronic pain, among them people with fibromyalgia. The more experienced ones are highly regarded as their knowledge is invaluable. When I was younger I found their services helpful, although not long-lasting. As I aged I found that too much was ‘stirred up’ and I would have after-effects.
Gentle soothing strokes, like Russian massage, which is an only one-half hour in duration, do help somewhat, (and has been found to be evidence-based, which is unusual for massage practices) but positioning is difficult for me now. There are so many types of massage that I can barely keep up with the names and approaches associated with each. I have been particularly interested in the similarities among manual therapists in general regarding ‘craniosacral’ work. I will refer to this a little later on.
The downside of this therapy is the cost. Many, especially those who are no longer able to work often or not at all, cannot afford the luxury of massages. Even bartering with someone close to you can be problematic as trying to massage another can cause a flare-up of hand, neck, or back pains. In lieu of this, I suggest gentle stroking of oneself with perhaps a feather, on the legs or arms as a way of making contact with the nervous system; it can be relaxing.
Massage therapy has not been shown to rely on research that is science-based, rather the practice is dependent upon anecdotal stories about relaxation and a sense of well-being that follows the procedure. However, touch has been shown through research to be essential to a good quality of life. But, it must be gentle touch! Nevertheless, many people with fibro cannot bear to have anyone’s hands on them, even gently, and shy away from any manual therapies.
Those who can generally benefit from any form of gentle manual therapy. I refer to the work of Canadian physiotherapist Diane Jacobs who discusses how primates such as monkeys thrive by using the sense of touch and the ‘failure to thrive human babies’ is a constant reminder that ‘body work’ is extremely important to us all. More and more evidence of gentle massage is shown to have beneficial effects on the elderly in long-term settings.
In the ‘olden’ days of back rubs in hospitals, patients looked forward to that much-desired three times a day practice from the nurses’ soothing hands. The key issues are gentle, relaxing, comforting, and soothing. While I have had many forms of the massage I am of late enjoying reflexologybecause it is so gentle, although it is generally not considered a genuine massage practice.
Chiropractic adjustments: I have generally found these to be helpful as the treatments are short, usually 15 minutes. Because my body often feels (?) out of alignment a short adjustment sometimes helps the joints. However, I am generally treatment sore for a day or two afterward, even if it does not hurt at the time. I am never sure if a flare-up is caused by this therapy.
Again, the cost may be prohibitive for manywithout medical insurance, and if one does not have joint issues mild exercise may be just the way to go rather than a more slightly dramatic maneuver. For the past few years, I have had trouble with my left hip so walking is difficult for me, but I try to walk as much as possible to help with alignment, however, this does not ‘cure ‘ the problem. I do enjoy an adjustment, perhaps it is the placebo effect?!
Both chiropractors and osteopaths lay claim to being able to adjust the spinal column, but many consider this to be a falsehood and ‘pseudo–science’.
Chiropractors are experts in Anatomy and Physiology and spend four years studying to become a Doctor of Chiropractic (DC). They can not only order x-rays but can take them if their clinic has the facilities. Their practice is considered by many to be evidence-based while mainstream medicine considers chiropractic to be within the ‘alternate’ domain.
The question is whether or not a true ‘subluxation’ actually exists, which is the basis of most DCs. Chiropractors base their practice on the belief that bones are out of place, and that the spine is out of alignment. Allopathic medicine Dr. Harriet Hall writes in ‘Science-Based Medicine’ ( posted by her on December 11, 2009): “In the 114 years since chiropractic began, the existence of chiropractic subluxations has never been objectively demonstrated”.
Further, she points out that if chiropractors use manipulation for low back pain they are using an evidence-based method used by physio (physical) therapists and osteopathic doctors. But when they are using the term subluxation it is a non-scientific belief system, she believes. The jury is out as to whether or not chiropractic manual therapy is true science or not. Even if it is only a placebo effect, my view is if it seems to release the pain to some degree keep up with it! If it doesn’t then search for other forms of touch that can provide relief, even if only temporary. This treatment should never hurt.
I am especially fond of my ‘own’ chiropractor as she sees herself “primarily as a nerve doctor, not a bone doctor”. She writes this in her newsletter (oxfordchiro.ca):” We live our lives through our nervous systems”. Since this is my overall view of the dysfunction of the nervous system in those of us with fibromyalgia her words are extremely important to me. “Our culture is focused on blood, such as pulse, blood pressure, and cholesterol. These largely result from nervous system directions.
So even the smallest nervous system disturbance can dramatically affect the way your whole body works”. Dr. Dena Churchill points out that although the moving bones of the spinal column are so close to the spinal cord, it is not the bones that she is treating but the nerves. Her February Practice Newsletter/Oxford Chiropractic Inc is a valuable resource from an experienced chiropractor.
Back to the criticisms of those who do not believe in subluxation. I have come to believe that there is a great cross-over among various manual therapists as to how to work with pain ( in particular), but it is in the language that is used that it becomes confusing. Apparently, there is no evidence that subluxation causes interference with the nervous system…hmmm?
But, bones can be out of place, can’t they? Who else might believe this? If bones are out of place then the nervous system, the spinal cord, and other systems are out of sync. Who knows for sure that chiropractors are using the language of subluxation inaccurately? Is subluxation a condition? A syndrome? A disease? A dis-ease? Can it be cured? More questions than answers for those of us with this dis-ease of fibromyalgia.
Time for another break here. These bronze statues in Vancouver tell it all. When I visit there (which is quite somewhat frequently) I spend time with these guys as they suggest to me that there are more questions than answers!
What on earth is an osteopath? In the USA it is a medical doctor (MD) who then takes training as a DO but functions as a regular allopathic doctor. It is confusing to me why a medical doctor would go on to become a doctor of osteopathy but not do manual therapy. This doctor in the USA practices osteopathic medicine, which is the same as her/his colleagues who are MD s.
In Canada and some parts of Europe, it is a rather different story. A DO is a diploma-trained osteopath (Diploma of Osteopathy), not a medical doctor with a degree. These practitioners cannot be called “Doctors” for their study of osteopathy. It is not a university degree-granting program from which they graduate, rather it is a diploma they receive.
The founder of osteopathy was a man the name of Andrew Still who was disillusioned by his studies in allopathic medicine, did not finish medical school, but began a school of his own in the US in the 1800s and called himself ‘Dr.’ Still. His students/followers were also called Doctor and their field of study was originally bones. In that respect, his work was evidence-based for the times as he studied bones intensely with cadavers and became an expert in knowing their structures.
The ways in which he studied physiology as opposed to anatomy are not particularly congruent with the science experts of even that day. He wanted to turn the idea of medicine on its head, particularly as he was opposed to any form of pharmaceuticals. It is a type of alternative medicine in which manual treatments are given to attempt to relieve muscle and skeletal problems. It is gentle and soothing and an experienced osteopath uses his hands to guide his treatment as do all manual therapists.
Still’s student William Garner Sutherland the man who originated the idea of Osteopathy in the Cranial Field had the notion that there was cranial bone mobility that would affect the cerebral spinal fluid pressure. This has been shown to be inaccurate through scientific evidence which has repudiated this observation.
It is important here to point out the similarities between craniosacral therapyof massage therapists and that of many osteopaths (and now more recently some physiotherapy approaches which are somewhat similar) to working with manipulating the synarthrodial joints of the cranium. While cranial osteopathy has been characterized often as pseudo-science, woo-woo, and quackery many practitioners believe that by releasing the bones of the cranium the cerebral spinal fluid is regulated and pain can be released.
There are many who believe that by releasing these bones even fibromyalgia may be helped. None of these assumptions have been proven to be totally true. Research has shown a therapist cannot move the bones of the skull enough if at all, to affect the circulation of the spinal cord. Ah! But as we shall soon see there is a physiotherapist of great acclaim who has shown otherwise! More later.
Rather than go into the history of this ‘profession’ it is sufficient to say that, like massage therapists or anyone who practices any kind of manual therapy, an intuitive understanding of the muscles and bones evolves over a long time. Osteopathy is not an evidence-based practice. It is expensive for the client and often not paid for by insurance companies.
Interestingly, in Canada, it is often massage therapists who want the extra perceived prestige of a diploma in osteopathy after their names who enroll in a diploma school to learn the ‘theories’ behind osteopathy. However, in the long run, I believe it is their initial training in massage and the years of experience they have accrued which will guide their practice.
I have had osteopathic manual therapy and in the hands of an experienced practitioner I can attest to some effectiveness for a short period of time, but not for a long-standing condition like fibromyalgia, which (I repeat) is not a disease, although called one by many. It is a syndrome that requires more than manual therapy to treat.
In spite of Still and his followers’ language which differs somewhat from that of allopathic medicine, and his emphasis on blood and veins instead of the new research which focuses on the nervous system and the brain, the practitioner uses the intuition of all manual therapists to aid in ‘changing the brain'( more on this later), although osteopaths do not use that language. However, like all of us who enjoy stroking, rubbing, touching, and massaging our aching bodies the relaxation aspect is pleasant, and if one can afford it an excellent way to train the nervous system to relax.
Physiotherapy (Physical Therapy): Here we find one of the respected, evidence-based professions that almost always use manual therapies to treat the body. (Although I have had experience with physiotherapists who use machines and other equipment in lieu of their hands and for which there isn’t any proof of their effectiveness! Shocking to me!) .
Insurance companies will fund their claims if one is fortunate to have access to insurance. Otherwise, in hospitals, these are the professionals who are employed as manual therapists and there are many in private practice. Schools are situated in universities where the professors are expected to do research that is scientific in nature. It is not considered to be an ‘alternative medicine’ approach, but mainstream. I will mention a few of the approaches of the more recent forms of physiotherapy.
A Simple Contactapproach, developed by Barrett Dorko utilizes the body’s own subconscious movement, called ideomotor movement. I would encourage the reader to explore this concept as I have found it to be most helpful in the past. Ideomotion is a nonvoluntary movement prompted by mental activity. An example of this is the pain in my left hip and buttocks which I have discussed in the last blog.
It is the way in which my hip wants to move unconsciously but is interfered with by my brain registering pain. The way in which the pain has been released is through the gentle and slow movement of my leg by the physiotherapist. Many of the disciplines have based this awareness on their practices of their manual work through their own fingers’ exploration of their client’s body.
I find this type of treatment relaxing and helps me to focus on ‘changing my brain’. Yes! My brain says:” You can move this hip/leg”. It is gentle, soothing, and relaxing and promotes hope that change is possible. At the same time with this approach, I can ‘be in the moment, without worrying about the possibility of pain.
Gentle Skin Stretching, called dermo–neuro–modulation, ( DNM) developed by Diane Jacobs is a tissue glide in the direction the body likes. I have had the privilege of having treatments by Ms.Jacobs while she was living in Vancouver. These are words taken from her website:
“DermoNeuroModulating, or -tion, is a structured, interactive approach to manual therapy that considers the nervous system of the patient from skin cell to sense of self. Techniques are slow, light, kind, intelligent, responsive, and effective”. Her blogs are nothing less than amazing and her approach is one to which I ascribe. Her websites are extraordinary as are her research findings.
Somatic exercises, developed by Thomas Hanna, contract the reflexive muscles so that one can actively own the muscle again, turning off and overriding the reflex. Such treatments include Yoga, Pilates, and Feldenkrais and there are many ‘therapists’ who employ these specific methods which can be considered under the realm of massage or physiotherapy. It is difficult to find a specific discipline under which this approach would fit.
A more recent approach is that of Harry J.M. von Piekartz (Craniofacial Pain: Neuromusculoskeletal Assessment, Treatment, and Management) which is similar to the cranial-sacral perspective of osteopaths, some chiropractors, and massage therapists. This work is considered by many to be evidence-based, and grounded in pain science research for those suffering from craniofacial challenges.
Whether or not this is related to the release of bones in the cranium and allows spinal columns to open up and release tension within the entire body seems to me to be debatable, but perhaps because I am so much less aware of this technique which is difficult to understand I am not giving it the credit that is due. However, von Piekartz has become very popular among many physiotherapists worldwide, but not so much in Canada.
These are some explanations given to me by a physiotherapist: When we do cranial mobilization (it is not always moving bones)… we may move sets of nerves in the fibrous sutures (stress transducer analogy). This gives different sensory inputs to the brain. Or perhaps the pressure just sets off sensors in the skin like DNM- Diane Jacobs’ technique. Either way, it is more about changing sensory input to the brain. All nerves pass from the skull into the lower regions. It is a gentle and not at all painful approach to manual therapy. I enjoyed it.
I am uncertain about this approach but I do know that all manual therapies are helpful IF A PERSON CAN AFFORD THEM AND THEY ARE GENTLE! Now in my old age, I can attest to having had them all, I believe. Because touch is so important to our nervous system they all feel good :-).
Then of course there is the common approach of using electrodes, the machines that take the place of hands and allow the physiotherapist to be treating more than one client at a time. It then becomes a political issue of competition among various practitioners who are vying for us as clients. I am critical of this practice.
This rather lengthy discussion of the various manual therapists available to help with chronic pain in the body must and should acknowledge the role of the brain and the nervous system that feeds it information. This is crucial to acknowledge the evidence-based knowledge now available within the realm of the neuroscientists regarding ways to change the brain.
We, fibromyalgia people, are what our ancestors once called “highly strung” persons. Now, the secret is to find ways to live as highly sensitive persons while admitting there isn’t anyone who can ‘cure’ this dis-ease. But, we can still live fulfilling lives. We have to work with, not against the nervous system and manual therapists can help somewhat if they are up to date about the brain research and their views are evidence-based. Otherwise, a simple back or foot rub from a loving person might suffice.
This is a dull winter, about to be another snowy day. My brain wants to descend into the gloom. It is a struggle…
Maybe my loving spouse might give me a foot rub? Or, alternatively, I could spend the next twenty minutes in my space where I do mindfulness meditation…then do some stretches…listen to music. I am the mistress of my own fate.
“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 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 every day?
There are many strategies that one could employ but the 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.
I have heard and recorded some key phrases that help me (sometimes, when I am diligent about it) calm a frightened mind. One of which is the RAW approach: REGISTER your pain; ACCEPT it; WORK with your body, not against it.
Another method to reduce the potential threat within our nervous system is to differentiate between emotional and contextual memory. We can train our minds to bring up the specific context of the source that is calling up the traumatic information to our mind, rather than simply responding emotionally, without thought to the source. We do this without the drama of imagined angst.
There are other strategies I have learned over the years and have to work with continually:
Avoid catastrophic thinking. It is an ‘all’ or ‘nothing’ approach to life.
Avoid self-blaming such as “should have” or “would of”. Do grant me self-compassion instead.
Avoid mind-reading…imagining that the worst is about to happen. The glass is NOT always half empty.
Avoid fortune-telling. The pain, fatigue, and anxiety are not forever. I WILL have some good days.
I hope these strategies will help in the new year and as I gaze up at the winter sky (at least it is winter in my part of the world, while my Australian friends celebrated thesummersolstice just recently!) I can see the dark clouds dissipating while the amazing brightness of the pinks and blues predominate.
HAPPY 2022 TO US ALL AS WE MANAGE OUR LIVES AS BEST WE CAN WITH HOPE, SELF-COMPASSION, AND CHALLENGES WELL MET.
“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 are 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, and 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 all of these daily activities, it is crucial to understand the mechanisms, the triggers, that precipitate anxiety, depression, fear, and a host of other emotions to which neurons (nerves) respond, and which produce alarm signals from nociceptors. Nerves in the tissues respond to various conditions such as chemicals, mechanical issues, and temperature.
(Note: it is raining and my body has responded in a negative way, bringing on pain. It is my responsibility to work today with my mind to reassure it that we, that is my mind and body, are not in danger.) There are some neurons that are responsible for the danger signals that are sent to the spinal cord and the brain decides whether or not the situation can be ignored by the danger neurons (nociceptors).
Input from the body can send messages of danger, sensory input from the spinal cord to the brain. Muscles increase their tension and the nervous system prepares for flight and heightened vigilance. These are very simply the processes within the brain and the central nervous system that produce the many symptoms of fibromyalgia, most notably pain.
Heightened vigilance is a constant with fibromyalgia. It is raining, what does that mean to my mind? A few hours ago the sun was shining. Is this change something the brain should be aware of? After decades of living with a hyper-aroused nervous system, my poor addled brain cannot differentiate between change that is not harmful and that which should sound an alarm. The struggle continues. Weather is a trigger for me, but I can’t control the weather! I can work towards controlling my mind.
Fear, the root cause of anxiety is insidious. It wears down the physical and emotional aspects of our lives. Ailments, like fibromyalgia, develop from our perception of fear that is often unwarranted. The mind spins out of control and unhealthy images invade our mind, sending false messages to the brain.
In her audiotape, Pema Chödrön helps us to understand the triggers that perpetuate our suffering. She asks: What is causing our pain? What would happen if we did not struggle against it? Today, I am asking myself this question after a restless night with intense discomfort. I call my pain Hortense and I speak to her regularly, saying that although I understand she is warning me – what makes her think I am in danger?
I tell her to leave me alone for a while as I need to practice my breathing. Sometimes it works. It takes practice as she has lived within me for 50 years and is relentless. Oftentimes though I can look back and understand what the trigger has been, usually it is too much excitement or taking on more than I can handle and she is sending me a message.
It is the holiday season. Public excitement is everywhere. I can’t indulge too much in all the activities or I will suffer for a few days afterward. It is a huge trigger! Yet, I am drawn to the stimulation. It is addictive. “Quiet, Hortense. Come back in a few hours. I am not open to your presence right now. I will heed your warning.”
“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 that trigger happy memories for others.
Imagine a rose and the strong scent it evokes. What is the brain’s reaction? Hopefully, it is a joyous one.
However, for some this aroma might be troublesome as it could be associated with a tragic or unhappy event. A good smell for some may be a bad odor for others. As an example, for me, the smell of popcorn in a movie theatre makes me nauseous, although I do not have bad memories of movie theatres or popcorn which I quite like!
Going into a home where wood is burning makes me cough and there is increasing evidence that home wood stoves are unhealthy, although not everyone reacts overtly to that smell as I do. What are we to make of this other than we with this syndrome of fibromyalgia have hypersensitive senses.
These neurological ‘dysfunctions’ and contradictions of ours sometimes cannot be always understood. While it is easy to comprehend how the perfume or soap aisle in a department store or pharmacy(!) can cause many of us to feel dizzy, nauseated, lightheaded, and/or even experience shortness of breath, why is it that we can sometimes smell a scent that brings about pleasant memories and is happily tolerated?
Another quirk of mine: I hate the smell of aftershave, any perfumes, and cologne but love the scent of the natural oils of patchouli and sandalwood. Hair spray or strong shampoos can bring about a feeling of weakness, and walking into a shop that does cosmetic nails or some hair-dressing places can be overwhelming. It can be the body itself reacting to triggers that may or may not have associations with our past. But, it may also be an energy crisis within our bodies responding to extreme stimuli.
This is the case of Multiple Chemical Sensitivities (MCS) from buildings that are considered ‘sick buildings’ and in which people develop sensitivities from toxic substances. But, I do not work in such places and I live in a city in which government offices, schools, hospitals, and mostly all public places, excluding malls and theatres, are scent-free. So, I should be able to tolerate most scents that are not chemical in origin. Puzzling, indeed!
Have I inherited these tendencies from a mother who responded in a panic to loud noises and would ask repeatedly: “what IS that smell?”. I can tell immediately if a person has been in a place where food has been cooking. Like my mother, this smell on someone’s clothing makes me feel nauseous.
So I can say with certainty that odors affect me dramatically, even innocuous ones and that most of my senses are overactive, except my hearing which has deteriorated, but still cannot abide loud noises. But, there is another point of view. While I believe that we have an overactive sense of smell a small study conducted at Tel-Aviv University with fibromyalgia volunteers suggests a different story.
The research took place in 2014 by Amital, H., Agmon-Levin, N. et al with 24 people who had fibro, a control group, and another group of sclerosis patients. The study published in Immunologic Research (“Olfactory impairment in patients with fibromyalgia syndrome and systemic sclerosis”) suggests the fibromyalgia sample had a worse sense of smell and it impacted taste.
They used the Sniffin’ Sticks test as their ‘instrument’ for the testing smell. Since this is a very small sample it cannot be used as proof that this sense is decreased in fibromyalgia. The jury is still out! Many of us do lose our hearing and have no sense of smell or taste. Still, others cannot bear to be touched and many, many more of us are sensitive to light and temperature. It is up to us individually to keep tabs on that which causes discomfort.
These words of Sir William Osler, a Canadian physician educator (1849-1919) are poignant:” Observe, record, tabulate, communicate. Use your five senses…learn to see, listen to hear, learn to feel, learn to SMELL and know that by practice alone you can become expert”. While he may have been writing this to his fellow physicians we have to become the medical expert in our own lives.
“There is nogreater agony than bearing an untold story inside you”, Maya Angelou
A very interesting interview a while 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 lifelong challenge ahead of me.
I frequently review sites about fibromyalgia and while many come and go I wonder at my own need to continue, year after year, to write about the many issues that plague many of us living with this invisible dis-ease. I often become discouraged because most of the searches and comments on an old blog about itching seem to pervade the site, which was and continues to be the most popular topic, much to my surprise.
Of all the symptoms that challenge us, maybe it is itching that has the most physiological and psychological angst associated with it. But, are we all alike in this daily struggle? Or, is there one symptom that hounds us more than others? For me, it is undoubtedly pain. Next, it is the lack of stamina that distresses me since I was once a high-energy person. The past is always there waiting for us, reminiscing about what used to be and lamenting about physiological losses. I have a need to uncover how it all came to be that past events trigger the present.
Life can send us reeling, presenting blows we never recover from, presenting memories that are dependent upon where we are in our lives. Still, I do recognize that life memories are often unreliable. While yet, it is in the storytelling and narrating of my life that I can now see a pattern, a series of events that overwhelmed my ability to deal with sensitive receptors. I reclaim some of this loss through therapeutic writing.
As a mindful writer, I am working to get out of my head and into my body. I know enough ( or not enough!) about neuroplasticity to realize that who I am is malleable and can be changed. The past and the future are not the presents; they are created in the brain. While the past impacts my present, I must “re-engage the healthy self” (Koven interview). This happens for me when I begin ‘narrative therapy’. I don’t want to get stuck there and dwell over and over, but allow my brain to rewire itself so that I no longer see the world in black and white.
I enjoy long comments from readers as it reiterates my view that there is healing power in storytelling. But, in the end, there is nothing but the present moment which, for me, is where I live in springtime. The past is behind me and while it shaped me I have to learn how not to let it affect my catastrophic view of the future. Let me enjoy the beauty of the season.
“In three words I can sum up everything I’ve learned about life:it goes on”, Robert Frost
My friend 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 catastrophizing. Daily pain is exhausting, depletes our energy, and 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.
Chronic pain has become one of the leading reasons for doctor’s visits, workday losses, increases in pharmaceutical approaches for controlling the symptoms, and the emergence of Pain Clinics. Health care professionals are trying many strategies to ease the suffering of millions of those of us with a less than good quality of life.
Among them is the American law professor, Toni Bernhard, who documents her journey through the maze of adapting to and living fully with chronic illness. Her newest book is a practical and honest account of the ways in which a person living with chronic illness can turn her/his life around. As I have discussed so frequently Mindfulness Meditation is integral to her work.
It would seem that among the experts of chronic pain, the advice is very similar: exercise moderately when able, meditate, learn to say “no”, avoid being around friends and family who do not support you, and always keep in mind the idea of ‘pacing’ yourself, practice self-compassion and above all learn to live, rather than to be subject to defining oneself as PAIN! Living in the past or looking into the future is counterproductive. Being in the moment is the only way to live life fully.
It has taken me a long time to stop thinking like an invalid, rather than to acknowledge that I will live with pain but it will not define me. I will continue to do things I enjoy, with limitations, rather than waiting for the pain and fatigue to overtake me. But, oftentimes I give in to hopelessness particularly when my energy is depleted. It is somewhat difficult to accept that monitoring myself is the “new normal”.
She is the author of many Blog writes: “We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue.” (October 18, 2015). She goes on to say how complicated it is to work around what is considered to be “normal” within daily living. Life never proceeds along a linear straight path without daily fluctuations.
What is normal on a snowy, blustery, isolating day differs from a lovely autumn day when getting around outside is less problematic. Some things are beyond our control; while others are of our own doing. Trying to organize a dinner party for a dozen family friends at Thanksgiving is a major undertaking. But taking a drive in the countryside to leisurely appreciate the beauty of the day can be soothing. Yet, both are what we might enjoy, and having to exclude the one that would cause stress and anxiety might produce feelings of guilt and sadness.
This time of the year when there are such things are “scarecrow festivals” that make one smile can be just the medicine one might need.
But serving and preparing a dinner for guests can result in catastrophic thinking as one tries to be the perfect host. Yes, a gorgeous pie was made for our Canadian Thanksgiving dinner in October. Granted it was made by my granddaughter, nonetheless, the work required for a dinner of twelve can be overwhelming.
Sensibly, I was able to say that I was tired (the fatigue that only those who have it can understand) and would be the only person present who would not be doing any of the work. In the past, I would have exhausted myself trying to manage the entire affair. It takes a great deal of courage to be present at an occasion and not organize and take care of others. It takes old age to recognize that I can do both. Go for a ride to see the colors; go to a Thanksgiving dinner and sit back, watching others, being thankful we can be there and not feel overwhelmed with anxiety about how we should take charge.
After my month-long participation in June at the Pain Clinic, I slowly began to realize that those of us with chronic pain fit a profile that is very similar to one another. Many of us are prone to catastrophizing about our symptoms, often give in to depression following a bout of anxiety over some new experience of pain, and generally cannot remember that life varies often from hour to hour, certainly day today.
That there are challenges for us there is little doubt, but the term chronic implies that it is permanent, without any joy left to be looking forward to, little wonder we give in to a sense of despair. Anxiety- looking to the future with a catastrophic outlook. Depression- looking back on the past wishing we could change what we have become. It is not living in the present moment.
How many of us have fearful thoughts about the future? I do often. In Mindful Meditation seminars we are taught that thoughts are not facts. Believing I cannot ever again undertake a task that gives me joy is a challenge I face daily. We often have to compromise but sometimes the brilliant ways in which we have modified our accomplishments can be very satisfying.
I have been reading how Buddhism defines destructive emotions like passion, aggression, and ignorance. I can relate this to fibromyalgia. Unless we become the expert in our own lives we will continue to suffer from ignorance about this syndrome with which we have become afflicted. It is the inability to see the truth about our relationship to this over-stimulated central nervous system.
If we continue to treat fibromyalgia with aggression rather than kindly as part of our Self then we only exacerbate the symptoms. Without self-compassion, we will continue to treat ourselves in ways that continue to cause more suffering. Then there is a passion which is the desire for a different life than what we have. I am not a Buddhist nor an expert on philosophy, but one of the basic concepts is that of suffering.
It can be translated into anxiety or stress, the mental form of which can be suffering from growing old and illness both of which are endemic to fibromyalgia as we wonder if this pain will last forever and how we will manage it in the future. We all suffer, it is part of the human condition. However, often fleetingly, there is joy.
So, on this grey November day when the leaves have almost all fallen from the trees and we wait for the first snow (at least in my part of the world), I have to practice what I preach. Stop and enjoy some of the beauty still left from the autumn colors.
“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 overstimulation, 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, the main culprit.
The statistics regarding the self-described symptoms of fibromyalgia are staggering. They range from 10% to 15% of the population, while it is suspected that the numbers are even higher for unreported cases, particularly in regard to cultural, racial, and gender differences. It is likely that numbers will soar as more veterans of war are open to discussing the frustrating and often agonizing syndrome.
When I often read the symptoms reported by veterans most of whom are diagnosed with PTSD, I immediately recognize what we have described as fibromyalgia. Somehow though the label of PTSD seems to be more acceptable to the experts than fibromyalgia. Nevertheless, in my view they are identical twins, and changing the names and labels is not particularly useful. Certainly, however, dyscognition is common among those of us with PTSD and fibromyalgia, particularly when over-stimulated.
Many of us report pain as the most debilitating of symptoms while others suffer worse from confusion, lack of clear thinking, or fatigue. Most would agree that whatever is the most challenging it leaves one with a sense of despair and anxiety. While we have been told, for example, that pain does not mean damage, we nevertheless find ourselves in a state of high anxiety, wondering what this new type of pain might possibly be.
If we have overwhelming chronic fatigue the same questions arise. The struggles with everyday living result in extreme discouragement. It would seem that this entire multiplicity of symptoms can in and of themselves bring about more stress and confusion regarding our state of being.
While brain research is advancing greater knowledge than ever before, there is still much to be learned. However, it is known that chronic stress triggers changes in the structure of the brain as well as elevated levels of cortisol (the stress hormone). This in turn causes fewer neurons than normal. A cycle is created whereby the brain is in a state of “fight-or-flight” as the pathways between the hippocampus and amygdala are not functioning normally.
The struggle becomes that between the gray matter and white matter of the brain. Gray matter ( packed with nerve cells) is responsible for thinking, computing, and other such functions. White matter is composed of axons in a communication system between brain regions. It has a white fatty myelin sheath and speeds the flow between the neurons of the brain.
It is thought by some researchers that prolonged stress results in too much white matter. (You can read more about this in D. Kaufer et al in the February 11, 2014 issue of the journal Molecular Psychiatry). Kaufer writes: ” You’re creating a brain that’s either resilient or very vulnerable to mental disease, based on the patterning of white matter you get early in life”.
While these ideas are somewhat discouraging there are several ways of lowering the cortisol level: movement and mindfulnessmeditation, the most commonly cited and the old mantra I have been writing about for several years.
We can only work with what is now commonplace knowledge among brain experts, that is, the brain is akin to plastic so it can be changed. By using techniques of daily practice of mindfulness meditation we can learn to live in the present, not anticipate the future or dwell on the past. We can stop, breathe and think, live in the moment. We can refocus.
When we reach the depths of our despair believing that there is no hope WE can change our approach to our challenges. It does require effort, but we can do it, there seem to be little others can do for us; it is up to us.
Along with the disciplined practice of MM is that of movement, whether it be just walking, QiGong, yoga, or Tai Chi, the brain will respond in a positive way. After all only we have control over our own brains. We can change those neural pathways.
I have, of late, discovered another strategy that reduces stress and that is adult coloring books. It is indeed a mindful practice. In particular, I have enjoyed coloring a mandala. Having seen one being built and then torn down in Arizona many years ago I became intrigued with the concept that a mandala is to be destroyed after being completed as a way to show the impermanence of life and…everything changes. Colouring, that is the somewhat making of one, reminds me that change is possible and the intensity of focussing on the diagram has been very soothing to my aroused nervous system.
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 and 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.
When patients present themselves with chronic pain and a myriad of other invisible symptoms to their health care providers, their desire is for relief, more importantly, a cure. It is reasonable at first to rule out life-threatening conditions but with fibromyalgia, the tests can go on and on for several years or longer. I was 25 following a long labor and C section when I had my first attack of fibromyalgia. I could barely walk.
I was diagnosed with gout! I was a small person and did not have any of the usual characteristics of a gout patient, but a misdiagnosis kept me from understanding the side effects of the many medications I began taking. For many years various tests kept me wondering anxiously what each one would reveal (actually nothing was revealed!). The pain continued and has to this day – and will continue to be a challenge for me.
I have recently seen a site where a physician who herself has fibromyalgia suggests that a particular product has become the treatment of choice for both she and her patients with whom she has had great successes. I have read many such claims over the years and I find it disheartening. THERE IS NO EVIDENCE-BASED MEDICINE THAT HAS BEEN SHOWN TO CURE FIBROMYALGIA.
While it may be true that after suffering from fibromyalgia for many years various systems of the body are affected. However, there is no long-term, huge experimental, or quasi-experimental studies that can say with a fair degree of certainty that people with fibromyalgia are insufficient in magnesium, potassium, phosphorus, or any other kind of vitamin or mineral deficiency.
It seems likely that after years of pain and the many other symptoms of this syndrome, changes can eventually occur within the body which may have a deleterious effect on the hormonal and endocrine system, (perhaps, as in my case, even the circulatory and cardiovascular system). But to date, none of this can be proven.
Fibromyalgia remains an elusive condition of primary pain, fatigue, and a host of other symptoms that in the short term are non-life-threatening. I can only repeat what I have been proselytizing for many years: PAIN IS IN THE BRAIN. The pattern of more and more tests to make this invisible dis-ease fit a disease paradigm is exhausting, expensive, and unnecessary.
From my many years of research and living with fibromyalgia I can say with a fair degree of certainty that fibromyalgia is known to occur in a person who is highly sensitive, and generally has a crisis of some sort, like surgery, death of a loved one, or an accident that brings on the first major flare-up.
This person is overly empathetic, intuitive, and has an easily aroused central nervous system which is always in a state of hyper–arousal. There is a specific personality type. This is a person whom the world needs, and an empathetic caregiver who can easily sense what others need. It is also an anxiousperson.
Does this leave us without hope? Absolutely not. While it is challenging, brain research over the last two decades has shown the ability of the brain to change. But, more tests, more misdiagnosis, useless medications that affect us negatively, and constant physician visits are not the answer.
Interventions that are intended to promote self-management are the way that we should move forward as we become experts in our own lives. But then I am repeating myself since in all these blogs I keep saying the same thing. It is a struggle managing pain and fatigue, but any elixir that is said to cure fibromyalgia is not addressing the hyper-sensitive, hyper-aroused nervous system of those of us who are seeking a ‘cure’.
I have been researching historical figures who have been deemed hypochondriacs because of the vague ailments and histories of symptoms that mimic fibromyalgia, one of whom is Florence Nightingale. Others are such figures as Robert Schumann, the classical composer who was said to be highly sensitive as a young man and suffered greatly at age 16 after his father and brother died.
Glen Gould, the pianist was also said to be someone who was a malinger, a common derogatory word that is used for invisible pain conditions. He suffered from pains and was a worrier. Charles Darwin was a very anxious person and had pains and fatigue. The list is long.
We are in the company of many brilliant, talented, intense, anxious people! When a diagnosis is uncertain, and tests do not tell the experts definitive answers, the burden is on the person who suffers. Living with invisible pain and fatigue is a challenge until we take control of our own lives.
