When is the last time scheduled a rest day? I am not talking about spending the day in bed because your chronic illness flared and made leaving it impossible. What I am asking is, when did you last choose a day to relax, give your body a break, and allow yourself to chill out in front of the television for no reason other than you wanted to?
It is like all eyes were on me and that unless I was completely unable to leave my bed, I would be judged for not pushing myself to catch up on everything that I had fallen behind on.
The bad part about that way of thinking was that I wasn’t showing any love or consideration for myself. My life became a full-time punishment. If I was in bed, I was being punished by my chronic illnesses.
If I was able to get out of bed, I was punished for the time when I couldn’t get out. Over time I became bitter towards not only my family, but friends, acquaintances, and pretty much anybody who was alive.
After a decade of punishing myself, it became clear that I needed to give myself permission to take a day “off”. To do whatever I wanted, even if that meant doing nothing but binge shows on Netflix or Hulu all day. I had to love myself enough to not feel like everything I did was a punishment.
A day of planned rest may not always rejuvenate me physically, but it sure does wonders for my mental state. Rest days allow me to clear my head, breathe, and remember that I will be of no use if I continue to run myself into the ground.
A funny thing happened after I began allowing myself to enjoy life, I fell in love with living again. I will always be chronically ill. Yes, my chronic pain has been well managed for the past two years and continues to be, but there are no guarantees that this will always be the case.
I don’t know what the future holds. What I do know is that no matter what my chronic diseases decide to throw my way, no matter what new illnesses or injuries I accrue, I will never punish myself or my body the way that I did before.
Meditation is a way to practice being present. According to Jon Kabat-Zinn, a pioneer in the field of meditation and medicine, meditation is a practice of cultivating mindfulness, which means “paying attention, on purpose, in the present moment, non-judgmentally.”
For this post, I wanted to look at some recent research on mindfulness meditation programs involving participants with chronic pain. The purpose of these studies was to assess whether mindfulness can lower pain, reduce depression, and improve quality of life.
The Mindfulness-Based Stress Reduction (MBSR) program created by Jon Kabat-Zinn to teach mindfulness meditation to patients had demonstrated remarkable benefits for reducing chronic pain as well as anxiety and depression. I personally have found that this approach has helped me to reduce my anxiety, improve my quality of life, and manage my pain. The MBSR intervention is structured so that participants attend weekly sessions where they learn “different types of formal mindfulness practice, mindful awareness during yoga postures, and mindfulness during stressful situations and social interactions” (p. 227, Grossman et al., 2007).
Researchers investigated the effect of MBSR programs for participants with mixed chronic pain conditions and the significance of at-home practice for pain management. The study measured results in terms of bodily pain, quality of life, and psychological symptoms for each chronic pain condition (neck/back pain, arthritis, fibromyalgia, chronic headache, and two or more coexisting conditions). The researchers discovered that the degree of benefit of participating in mindfulness programs varied depending on the chronic pain condition, but that overall improvement was seen in almost every category (Rosenzweig et al., 2010).
Rosenzweig (2010) suggests different possible causes for how meditation practice can improve chronic pain conditions:
First of all, nervous system pathways to parts of the brain associated with stress can be inhibited through mindfulness practice.
Secondly, reducing psychological symptoms like anxiety and depression can help because those symptoms can amplify the perception of pain.
Third, mindfulness practice can help improve emotional regulation and coping skills in stressful situations.
Fourth, mindfulness contributes physical self-awareness which could help lead to better self-care.
Finally, mindfulness can help activate nervous system function associated with rest and calm (parasympathetic nervous system), which in turn can lead to deep muscle relaxation that may reduce pain.
Similar results were found in a study of the effects of participating in an MBSR course for people with fibromyalgia (Grossman, et al., 2007). Significantly, the researchers interviewed about half of the original participants from the mindfulness training group 3 years later and found sustained long-term benefits among those who continued their mindfulness practice (Grossman et al., 2007).
One research review compared 38 studies involving a total of 3500 participants. It examined previously published studies that investigated the effectiveness of mindfulness meditation as a treatment for chronic pain. They found that “mindfulness meditation was associated with a statistically significant improvement in depression, physical health-related quality of life, and mental health-related quality of life” (Hilton et al., 2017). In this review, participants showed promising outcomes on pain symptoms, but the degree of improvement was limited.
Research reviews like this are limited in their ability to compare and contrast different studies. Different meditation techniques were used in the different studies, such as Mindfulness-Based Stress Reduction and Mindfulness–Based Cognitive Therapy. In addition, the studies investigated outcomes in patients with different conditions, like fibromyalgia and migraine – which is like comparing apples to oranges. This highlights the need for more high-quality studies that include a greater number of participants with the same condition, using the same type of meditation program.
When it comes to trying mindfulness meditation, for people with chronic pain, there is nothing to lose and everything to gain. Prescriptions rarely offer total relief and come with unpleasant side effects. The only cost of meditation is a little bit of time. while the potential benefits are less pain, better mood, and a greater quality of life.
Talk about “coming out”. Lady Gaga announced she had to enter a hospital and cancel a number of future engagements due to severe body pain and fatigue that has been diagnosed as Fibromyalgia. She was very positive but she had no time schedule as to when she might be able to return to a regular schedule of work. If you have Fibromyalgia or know of someone who has this disease you know that this debilitating condition can literally change your life’s ability to function in a normal fashion.
Hopefully, Lady Gaga will not be just drugged up to be able to perform. I’ve already had some patients and marketing individuals try to send her information on my almost 30 years of working with Fibromyalgia patients. This just goes to prove that whoever you are if you are genetically tagged for Fibromyalgia it can be triggered by any physical, emotional, or chemical stress. As a high intense performer, I’m sure Lady Gaga has had many stressful moments. Regardless of an individual’s position, we should all be praying for Lady Gaga’s health.
A number of years ago an individual in the entertainment business told me that he knew of a number of performers that had Fibromyalgia but were afraid to “come out” because even years ago this condition meant that their ability to work, be on time, remember their lines or just be functional was compromised by their Fibromyalgia condition. If you are a performer and you are causing production to lag due to your illness that’s causing a money loss for the investors you might be labeled as not reliable. That could mean the end of your career. For many of you who are suffering from Fibromyalgia, it has already meant the loss of your job, spouse, and a normally functioning life that you once knew.
In almost 30 years working with Fibromyalgia patients, I have had almost every manner of individual including rich, poor, famous, females, males, and children and the common thread is the loss of the life they once knew. Do not give up hope. We have successfully helped those who have followed our protocol. Getting back to the life you once knew is what we help you achieve.
Last week I traveled to the California Fibromyalgia Research and Treatment Center to visit with Doctor R. Paul St. Amand and his assistant Claudia Marek. During my visit, I found that the research center is getting closer to identifying the genetic component that triggers fibromyalgia and its many symptoms.
Since pharmaceutical companies control where and how much of the research money is distributed the ability to complete the study is lacking. Guaifenesin, the OTC product used in the treatment protocol to reverse the symptoms and control the condition is not something that would financially benefit the pharmaceutical companies. Therefore, the money needed for this study to be completed is limited.
Really ladies and gentlemen did you expect anything else from the same companies that sell Lyrica, Cymbalta, Savella, morphine, and any of the other “answers” for your fibromyalgia.
During my visit, I asked Dr. St. Amand about a paper that was published in the 1990s by Dr. Bennett, a rheumatologist, that questioned the validity of a research study involving guaifenesin and its effects on fibromyalgia patients. The paper has again resurfaced. Dr. St.Amand stated there were mistakes during the research study due to the incomplete knowledge as to how salicylates infiltrate so many of our daily products including herbal supplements. Since that time, published research has proven the validity of guaifenesin with numerous research papers and references.
In further discussions with Dr. St. Amand and Claudia Marek, they stressed the importance that each individual take upon themselves the responsibility to check all products for salicylates. A simple rule to follow is to check the ingredients on each product. If the ingredients state “Nutritional values,” it’s a food that can be ingested. If the ingredients state “Supplements” do not eat this product regardless of how much you might love what’s in it. If you are on the fibromyalgia protocol and you start “playing” with salicylates, you will fail and return to the whole body aching pain you started with. It’s not worth it!
During our meeting, there was a discussion of multiple conditions and how they affect fibromyalgia patients. In my treatment of fibromyalgia patients over the past 25 years I have not had any that did not have other conditions. These secondary conditions either affected or were affected by fibromyalgia, the most common being chronic fatigue.
Finally, hypoglycemia has so many related symptoms to fibromyalgia that Dr. ST. Amand coined the term “fibroglycemia”. In my restricted hypoglycemic diet I removed sugar, gluten trans-fatty acids, and dairy from the patient’s diet for 2 1/2 to 3 weeks. This removes inflammatory products from the individual’s diet during this detox period and also leads to many patients losing weight during this time. Most fibromyalgia patients respond within days with reduced symptoms and clearer thinking. It just takes self-will and determination.
If you’re still suffering from whole body pain, fatigue, “fibro fog,” irritable bowel, headaches, and many other symptoms what have you got to lose but all the symptoms above. You can do this and I am here to help. Call me with any questions you may have.
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.
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.
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.
“Women never have a half-hour in all their lives (excepting before or after anybody is up in the house) that they can call their own, without fear of offending or of hurting someone”, Florence Nightingale
Florence Nightingale is famous as the woman who developed modern nursing. From May 6-12th we celebrate ‘National Nurses Week’ in honor of her birthday which was on May 12th, 1820. However, her birthday is now also celebrated as ‘International Chronic Fatigue Syndrome and Fibromyalgia Awareness Day. It is thought by many to have fibromyalgia that Ms.Nightingale suffered from most of her adult life.
The critics of Nightingale have speculated that she feigned illnesses, was bi-polar, mentally ill, and suffered from depression, and post-traumatic stress disorder, they were all due to various types of so-called ‘hysteria’ which commonly demeans women and highly sensitive persons. My view is that she developed full-blown fibromyalgia after the trigger of contracting a fever in Crimea while experiencing the horrific hospital and nursing conditions of war. But, it is not as simple as that.
For her to have developed fibromyalgia she needed the following personality and psychological characteristics: a highly sensitive person throughout her life, and plagued with anxieties and past trauma. The war and finally the fever depleted her energy and her overwhelmed central nervous system. She could no longer work as effectively with the anxieties she had faced. While the terms ‘shell shock’ and PTSD seem to be different from fibromyalgia, they are basically of the same anxiety family.
This view is held by many and it fits with my view that fibromyalgia is socially induced, in highly sensitive people (particularly women) whose central nervous system is in a state of chronic hyper-arousal. Dr. Kevin White calls fibromyalgia the ‘Nightingale Disease’, and while I agree that many of the systems within the body eventually break down from this constant state of overstimulation of the CNS, I do not agree with him that it is in and of itself an actual disease, rather a dis-ease.
However, no one has yet to ‘prove’ any particular theory about fibromyalgia, which is frustrating for both patients and health care providers. We can only continue to speculate, hoping for more concrete answers. Needless to say, I believe my theory is worth contemplating about fibromyalgia and chronic fatigue.
A review of the hundreds of comments I have received over the years on many blogs and other forms of research/interviews I have conducted has been interesting to observe that many of the commentators are nurses.
This fits in with my view that it is caregivers, primarily women, who are highly sensitive, working in highly stressed situations, coupled with anxieties, who often say of their lives that they are ‘burned out’ from a lifetime of caring for others. I continue to be amazed at how many nurses suffer from fibromyalgia brought on by a personal history of stress/anxiety and usually precipitated by a crisis, an accident, surgery, or something as seemingly simple as a root canal!
I refuse to think of Florence Nightingale as a malingerer considering all that she accomplished over her lifetime, like the many women I hear from daily who accomplish so much, caring for others, wanting to make an improvement in the lives of others while continuing to face their own challenges with pain and fatigue.
I believe that those of us with central sensitization, that is, fibromyalgia and chronic fatigue, or to call it by another name -“post-traumatic stress disorder”, all suffer from chronic anxiety/ fear. These terms are, in my view, interchangeable. They can keep us imprisoned without recourse and in a state of hopelessness. In fact, the US Department of Health and Human Services has developed a new name that can even be part of our repertoire, that is, “Systemic Exertion Intolerance Disorder”.
In short, more diagnostic criteria are available for health professionals who are interested in tagging us. It is true that we have little energy along with our other challenges, but are we just a collection of symptoms?
For almost a decade now I have been writing about how those of us with these conditions, have options regarding a better quality of life. Yet, in spite of my preaching, I find myself, like others, often recounting yet another symptomof central sensitization almost ignoring the gestalt. Note for example the hundreds of comments or ‘hits’
I have on the two most popular blogs 1) itching and 2) tingling and numbness of arms. One would never have imagined that these two symptoms would be so problematic! Yet, those of us who suffer from specific symptoms focus on them often to the exclusion of what can be done to improve our daily lives.
The intent here is to gather together the ways in which we can begin to take control of our lives in lieu of medicalizing our very existence. After all, I have often written that central sensitization is not a disease but a dis-ease.
1) Talk therapy: We have become highly sensitive persons either because we were born with that characteristic or developed it early in life. We have had a past trauma that has resulted in repressed emotions that need to be attended to by a professional therapist.
2) Mild to moderate exercise, in particular walking.
3) Mindful Meditation.
4) Bodywork involving touches, such as massage, reflexology, chiropractic, Jin Shin, physiotherapy, or osteopathy.
5) Movement therapy such as chi gong, yoga, and tai chi.
6) Avoiding over-stimulating and stressful situations as much as possible.
7) Taking on a new, repetitive, creative undertaking that will help us change our brain: drawing, painting, quilting to name a few.
8) Avoid caffeine and other foods that are too stimulating.
9) Do not over-medicate. If possible medical marijuana through oils or other edibles is a good alternative, especially in regard to sleep.
It must be our intent to change our brain. Unless we embrace the concept of neuroplasticity ( that is, the capacity of our brains to change) and understand that it is up to us to become the masters/ mistresses of our own fate we will live forever in fear and hopelessness, dwelling on symptoms.
On a personal note: I must practice what I preach. It isn’t easy.
