“Names are not always what they seem”, Mark Twain
How to go about convincing experts and the general population that fibromyalgia is not a disease, but a Medically Unexplained Syndrome (MUS)? It is in fact, a dis-ease. It is mysterious in the ways in which it exhibits itself with a vast array of features, but the cause can be explained as an uneasy central nervous system! What is implied in that name? Generally it is ‘sore all over’. Fibromyalgia is a compilation of various symptoms such as pain, fatigue, itching, depression, digestive upsets and such a variety of psycho-social- biological challenges that are almost too numerous to cite. The onset : occurs in a highly sensitive, anxious person, with a chronically hyper-aroused nervous system, the fearful amygdala of the brain in hyper-vigilant mode, and generally, but not exclusively, is brought on after a traumatic event, such as an accident or surgery, divorce or the death of a loved one and especially such traumatic events as wars.. Its twin is PTSD. Over time muscles and subsequently joints become increasingly painful and the quality of life suffers.
Is there a type of person more prone to fibro? Well, an anxious personality is a predisposing factor. Whether or not it is a personality trait that one is born with or acquired is up for debate. The person is a ‘type’, but not all anxious persons have fibromyalgia, however the opposite is true, that is, those with fibromyalgia have a history of anxiety. The mind and the body cannot be separated and are together joined forever. It is not a ‘curable’ dis-ease, but there is life after the diagnosis. So let us lighten up a bit for a few seconds! Bright flamingos should bring a smile to our faces, even if it is temporary ( I took this picture in Paris two years ago. These flamingoes did not have fibromyalgia). The more we smile the more the nervous system tells the brain there isn’t any danger, so relax and breathe. FIBROMYALGIA IS NOT LIFE THREATENING. But, it IS challenging! What is to be done for relief?
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 only one half hour in duration, does 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 down side 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 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 by 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 for 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 massage I am of late enjoying reflexology because 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 afterwards, 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 many without 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 manoeuvre. 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, 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 of subluxation it is a non-scientific belief system, she believes. The jury is out as to whether or not chiropractic manual therapy is a true science or not. Even if it is only a placebo effect, my view is if it seems to release 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 a subluxation causes interference with the nervous system…hmmmm? 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, 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!
Osteopaths:” What’s in a name?”, William Shakespeare
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 “Doctor” from 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 by 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 expert in knowing their structures. The ways in which he studied physiology as opposed to anatomy is 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 shown to be inaccurate through scientific evidence which has repudiated this observation.
It is important here to point out the similarities between craniosacral therapy of massage therapists and that of many osteopaths (and now more recently some physiotherapy approaches which are somewhat similiar) 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 enrol 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 focusses 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, massaging of 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 uses 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 Contact approach , 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 non voluntary 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 ways in which my hip wants to move unconsciously but is interfered with by my brain registering pain. The ways 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 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, contracting 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, 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 world wide, 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 input 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 skull into lower regions. It is a gentle and not at all a painful approach to manual therapy. I have 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 allows 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 who feeds it information. This is crucial to acknowledging 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 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.