Obviously, I cannot answer for all of the people of the countries in the world, however, those people that I interviewed for the most part either never heard of fibromyalgia or had very little knowledge of this condition. In my opinion, the people that I interviewed were well educated. Some had heard the term fibromyalgia but had little knowledge of this condition except for some similarity to flu-like symptoms. Any of the other many symptoms related to fibromyalgia such as headaches, fatigue, intestinal problems, hair loss, etc., were not considered or mentioned in the discussion.
For example, a lengthy meeting with a group from Brazil found my discussion both interesting and fascinating but apparently had fibromyalgia confused with diabetes and cholesterol conditions. It was interesting that one male individual from the group had no problem remembering his medication, Crestor, for his cholesterol problem but refused to consider any dietary changes including heavy levels of butter and bread along with excessive smoking. When I mentioned fibromyalgia I was met by stares, shrugs, and questions. Languages caused minimal problems since most people I met were conversant in the English language.
There were three groups of people that not only were knowledgeable about the condition of fibromyalgia but also had either family or friends that had been diagnosed with it. These individuals were from the countries of England, Scotland, and Denmark. These individuals were also knowledgeable because their medical community has apparently accepted fibromyalgia as a medical condition. However, treatments suggested in these countries follow the allopathic pharmaceutical forms of treatment.
Apparently, fibromyalgia is not known or understood internationally by the general public. I also question whether or not this is also true in the U.S. This lack of knowledge and acceptance only adds to the problem of understanding the many symptoms that surround a fibromyalgia patient and the proper treatment required.
In twenty-four years working clinically with fibromyalgia patients I have yet to meet one that does not have some lumps, bumps, and/or water-filled swellings also known as lesions just below the skin. What are these and where do they come from? They most often are not painful trigger points. They are areas of swollen tissue. With excess phosphate and calcium in fibromyalgia patients’ cells, the body is unable to evacuate these and other chemicals. These swellings, lumps, and bumps can be found in muscles, tendons, ligaments, and at times in the joints.
Mapping is the form of examination used in our fibromyalgia protocol. This examination is done by a trained physician such as a chiropractor, MD, DO, or a physical therapist or licensed massage therapist by lightly running the flat area of fingers, the pads, over the arms, legs, neck, and any other exposed area. The location of these lesions is then drawn on a caricature of a body. As the patient continues through the fibromyalgia protocol these lesions begin to disappear.
This Mapping technique not only assists the doctor in monitoring the success of the protocol but also an additional positive stimulant for the patient to recognize progress in the return to health. This is an objective test run by the examiner on the fibromyalgia patient. Regardless of the reaction of the patient as too painful areas the examiner should only mark down those areas that are lumps, bumps, and or swellings. There is only one area that is checked during Mapping for pain and that area is the left front thigh.
Mapping should be done on the first visit prior to beginning any other portion of the treatment program. The establishment of the baseline prior to any medication or portion of the program will be used as a reminder and comparison to where you were at the start and how each patient progresses through the protocol.
Fibromyalgia, meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia).
Daily variations are interwoven in combinations from the following list of the most common symptoms.
Central Nervous System – Fatigue, irritability, nervousness, depression, apathy, listlessness, impaired memory and concentration, anxieties, suicidal thoughts, insomnia, frequent awakening from pain resulting in non-restorative sleep
Musculoskeletal – Pain and generalized morning stiffness in muscles, tendons, ligaments, and fascia arise from the shoulders, neck, upper and lower back, hips, knees, inner and outer elbows, wrists, and chest. Injured or old operative sites are often most affected.
Fibromyalgia is described as a non-articular disease, but those with the illness know better. Joint pains — with or without swelling — redness, and heat are frequent.
Irritable Bowel— often called leaky gut, spastic colon, or mucous colitis – Nausea – often brief, repetitive waves; indigestion, gas, bloating, cramps, constipation alternating with diarrhea and sometimes mucus in the stools
Genitourinary– Pungent urine, frequent urination, bladder spasms, burning urination (dysuria) with or without repeated bladder infections, interstitial cystitis, vulvar pain syndrome (vulvodynia), vaginal spasms, irritation of the vaginal lips (vulvitis), irritation of the vaginal opening (vestibulitis), painful intercourse (dyspareunia), “Yeast infection” without the typical discharge, intense PMS and cramping, symptoms worse premenstrual
Dermatological– Various rashes with or without itching, hives, red blotches, tiny bumps or blisters, Eczema, Seborrhea, Neurodermatitis, brittle poor quality nails, premature loss of hair, feelings of cold or hot skin – especially on the palms and/or soles and thighs, crawling and electric vibrations, prickling, super-sensitive to touch, flushing – sometimes with heavy sweating
Miscellaneous Symptoms– Headaches – including migraines, dizziness, vertigo (spinning) or imbalance, dry eyes with itching or burning and blurred vision, nasal congestion, post-nasal drip, irritated tongue, abnormal tastes (bad, scalded, or metallic), ringing or swishing sounds, numbness and tingling hands or feet or face, leg or foot cramps, weight gain, low-grade fevers, greater susceptibility to infections and allergies, heightened sensitivity to sounds, lights, odors or chemicals, morning eyelid and hand swelling from fluid retention that gravitates to the lower legs where it stretches tissues and causes restless leg syndrome
This separate entity can be induced or intensified by fibromyalgia. Forty percent of female and 20 percent of male fibromyalgics suffer from fibroglycemia — what we call the combination of both conditions. Symptoms greatly overlap those of fibromyalgia, but sugar craving, accompanied by tremors, sweating, anxiety, panic attacks, heart palpitations, faintness, and frontal headaches — especially if hunger-induced — are solid clues to the diagnosis.
Hyperglycemia must be treated concurrently or the patient will not totally recover despite the reversal of fibromyalgia.
Fibromyalgics with hypoglycemia must follow a low carbohydrate diet as prescribed or they will not feel better, even when guaifenesin clears the lesions of fibromyalgia. Though not mandatory, fibormyalgics with carbohydrate cravings will get a “jumpstart” with similar dietary modifications for the first 30 days of treatment. Carbohydrates (sugars and starches) release insulin. This hormone not only induces kidney absorption of phosphate but also drives it into various cells and intensifies symptoms.
Another fibromyalgia patient just recently has reached that level of recovery that most of you only dream of. I’m talking about no pain and being able to plan to begin living and enjoying life. This young lady is 30 years old and was literally nonfunctional when her parents brought her into our clinic. With doubts and apprehension, she decided to give one more program a chance, and three months later she is a hiking, fishing, and planning on her “new” life.
Three months you say? Impossible! Well, although all of our patients are not as successful, it has been more common than not for patients to reach pain-free levels in three months’ time. The fibromyalgia protocol is that successful. It takes determination and a strong will to follow exactly what we outline for your program. That often is the difference between success and failure. You cut corners and you will fail. Our protocol is not painful or filled with mental gymnastics. The program requires you to get out of your comfort zone of life and diet and follow what really is a simple step-by-step program. The best part is you have me to help guide you so you do not fail.
Try our protocol or check the website for patient videos on their success.
Recently I completed a number of “video blogs” better known as “vlogs” that explain a number of steps in our protocol that might require a video in order for you to understand more clearly about fibromyalgia and our program. When completed they will be available on Youtube. We also plan on a regular series of video presentations that will include information and also a question and answer session for you and the general public. We will notify you as to when this will begin.
Due to the number of fibromyalgia patients in so many different states requesting assistance in starting our fibromyalgia protocol, we will be visiting a number of states training doctors in our program in order that you have direct contact with a trained fibromyalgia physician in your area.
We will notify you as to the dates and locations of training seminars for your doctors.
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.
