” The world is full of suffering, it is also full of overcoming it”, Helen Keller
A condition called paresthesia results in numbness, tingling, and pins and needles in the limbs, due to disturbances in the nerve pathways. Those of us with fibromyalgia have what is also known as peripheral neuropathy, most particularly in the legs. For me, it is much worse at night and in my arms, rather than the legs. However, I also have many twitching new sensations in my legs as well, but the arms right now are worse. The result is that I wake up several times during the night when an arm is ‘asleep’, numb with cold and actually hurting. When I am up for a while, moving about the feeling comes back in my arm and I fall back asleep on the other side only to wake up an hour or two later with it on the other side. My sleep is very disturbed by this relatively new symptom. But, then I developed pains in the knees this summer, another new symptom. Just as I think I have had them all, something new crops up. How discouraging. Like other sufferers of pain, I live in fear that this new symptom will not disappear. While I am a great fan of Harriet Lerner it is this particular book that helps me the most.
It seems that peripheral neuropathy, that is pain mostly in the legs, tingling of the extremities, pins, and needles, numbness, and “falling asleep” of legs or arms is quite common among those of us with fibromyalgia. The central nervous system, being always in a state of hyper-arousal is on high alert. Unlike others who are diabetic and have the same symptoms, those of us with FM do not have this constantly as do diabetics, and is usually associated with a flare-up. It is time to stop, take stock of what is happening in our minds and work with our pain rather than struggle against it. Not an easy job!
I am very sleep deprived of late yet I dread going to bed knowing that a few hours later I will awaken with hurting arms. I do all the suggested right things: I take cal/mag supplements, a B12 supplement under my tongue, and rub my arms with a camphor cream. I take an Epsom salts bath before going to bed and apply heat to my neck during the day. I put a small pillow under my neck to support the area that is not on a pillow and I have the right pillow for my upper body. I try to discipline myself to meditate each day and I also do some gentle movements of my arms often during the day. One particular stretch which does help somewhat is standing against the wall with my arms outstretched against the wall and my head against the surface with a forward look, but not jutting my chin outward, for one minute. I try not to struggle against the pain. QiGong is supposed to be good for this condition. Yet, in spite of all my good intentions, the demon often persists. It isn’t often I write a blog with such whining but today after very little sleep and cold, wet, snowy weather (gasp! it isn’t even officially winter yet!), I feel entitled. Forgive me, folks! The women in my book speak often about feeling guilty about complaining, but since our symptoms are so diverse and frequent, it isn’t easy to ignore them. So this is a blog about my newest struggle!
“The amygdala in the emotional center sees and hears everything that occurs to us instantaneously and is the trigger point for the fight or flight response “, Daniel Goleman.
Many years ago I had hoped that it wouldn’t take long before most would finally give up searching for viral/bacterial/hormonal or other CAUSES offibromyalgia and agree with my theory that this demon is caused by a hyper-aroused nervous system is highly sensitive anxious persons! My book was the first to write about that and now I find that in the magazine Psychology Today, August 2011, an article was written by Andrea Bartz, suggests that as well!
I have laid out these ideas as fibromyalgia= highly sensitive persons who have had acute or chronic trauma in their lives (psychological and/or physical) and have developed a hyper-aroused nervous system, chronic anxiety, and amygdala that is hyper-responsive to fight or flight tendencies. This is called central sensitization, that is, being hypersensitive to sounds, stress, weather changes, light, and many other conditions that can affect the nervous system and which develop slowly over time.
What has not yet been documented by many is why it is perceived to be more prevalent in women, or at least why it is reported more frequently by them. I developed this theory further than what I have just cited and suggest that because the majority of women in society are generally the caregivers of others and have developed highly intuitive empathetic personality traits, they are more prone to a predisposition to fibromyalgia if they are overlyempathetic. But, this is a somewhat simplistic view as many men are also highly sensitive, and the relatively recent documentation of men suffering from PTSD is now gaining more credibility. All people who are highly sensitive persons and are overly empathetic /overly compassionate, and suffer greatly fromchronic anxiety are prone to fibromyalgia. I realize that there are many men with fibromyalgia who also are HSPs.
As roles change somewhat in society and more HSP men become highly empathetic caregivers it may be that fibromyalgia will have been under-reported in men in the past. Not all caregivers are overly empathetic, but interestingly, in the hundreds of people I have interviewed either formally or informally, I have found nurses and social workers to have a high rate of fibromyalgia, particularly if they themselves have experienced severe trauma in their own lives. The key is not female vs males, but rather certain personality traits set up conditions that often result in fibromyalgia. Interestingly, I read recently that children who had a mother who was depressive had a larger amygdala than the usual size of the amygdala. Could it be that these children were raised in a somewhat unstable home situation, always on the alert, always anxious? Too early to even speculate about these new findings in the research. Even more dangerous is the idea that the mother is responsible for one more bad thing in a person’s life! Mother blaming has been far too common in the past.
I have one major differing theory about HSPs than the psychologist, Elaine Aron, and the article was written by Bartz: I do not believe that we are necessarily born with the tendency, but that it is primarily socially induced. However, neither the psychologists nor I, the sociologist, can prove this point and I am not sure it needs validation. More to the point, there is the possibility of changing the brain and establishing new pathways. Living as an HSP may be appreciated that it can be a gift, but it can also be a burden. There are numerous strategies I have described elsewhere and it is too bad that those who write about HSPs do not focus on them in order to make our lives less prone to intense sensitivity.
” Nonviolence means avoiding not only external physical violence but also internal violence of spirit” , Martin Luther King, Jr.
Violence can be defined in many ways. It is anger at its peak in the forms of shouting, yelling, hitting, sexual and/ or physical and /or emotional abuse, throwing things, or any other way of inducing fear and trauma in others. Racism, sexism, homophobia, and all the social injustices are a form of violence. It involves domestic violence, massacres, and harassment, which plague us on a daily basis. The TV gives us shots of Afghanistan, Iraq, and Libya in which war violence is perpetuated. The media and movies fill our psyches with violence, and we face it personally in our own lives. It is not a kind, gentle world. Those of us with fibromyalgia have highly sensitive natures (which I have written about extensively) and we absorb this violence regularly, to the detriment of our hyper-aroused nervous systems.
A”menschenkenner” is a German word that means “someone with a knack for figuring people out, for taking their measure”. The dictionary describes this characteristic as a person who is a judge of character; a connoisseur of nature. I believe that this trait is highly developed in people with fibromyalgia and in the presence of violence or potential violence our nervous systems respond on high alert. If we sense even the potential of violence we respond as if it was imminent. Paradoxically, when I read mystery novels that are not particularly healthy for my psyche, I find myself immersed in the inevitability of anger, rage, and physical or sexual abuse. However, I continue on this path which arouses my nervous system. However, in real-life situations, I am sometimes anticipating that anger could escalate to violence and my system goes into overdrive. Reality and fantasy evoke different emotions, but I have not explored research that explains this phenomenon. What I do understand is that people with fibromyalgia have a tendency to become fearful around those who are excessively angry people.
The question is: how do we live in a violent world and not take on the trauma associated with it? Given our highly developed characteristic of overly emphasizing others, it is not as if we have become immune to scenes, images, or sounds of violence. In fact, we can often predict when someone is about to rage and our bodies react negatively in anticipation. A simple story of someone falling, for example, can arouse in me the actual unpleasant sensation of another’s pain. Hearing a racist remark can bring tears to my eyes. Homophobic stories or jokes place me in the realm of those who are being ridiculed and my nervous system becomes highly aroused. But the more dramatic forms of potential or real anger and violence can leave me reeling for hours or days on end.
In an article by Mark Fenske in the Globe and Mail, July 7, 2011 (L6) I found answers about how we feel another’s pain. “We feel his pain. Literally”, he writes, describing a “class of brain cells called mirror neurons helps explain empathy and the contagious nature of emotions”. Further, he writes” these cells are thought to “reflect” the actions and feelings of others”. For that reason, among many others, it is important to reduce our own stress and avoid situations where anger and violence are common occurrences.
” These are exciting and challenging times for the manual therapy professions. I believe that the pain science world is handing extremely valuable information to clinicians. We now have a greater understanding of the behavior of pain states and we are becoming aware of the molecular targets of manual therapy”, David S. Butler
Dear readers, I apologize for not writing a blog last month, but I have been sick with a cold that would not abate. Nonetheless, as usual, I have still been pondering about the many issues that plague those of us with this demon that can be so debilitating. I search constantly for strategies that could be effective for pain management and my readings and searches often take me to places I had not been before. But no matter where I research I come back to pain and the brain and evidence/research-based strategies. I will never find the cure for my own chronic pain. It is a question of what practices work somewhat and which ones would do more harm. Most importantly how I can avoid flare-ups and not identify myself as my pain to the point where I don’t move coming from a place of fear.
Repetitive actions, long workouts, and strenuous exercise are often harmful, not only to those who have fibromyalgia but to most of us. I remember meeting my physiotherapist Nick Matheson for the first time and telling him I was aiming to speed walk for one hour a day. (I have made reference to Nick on other blogs). His question to me was” WHY?”. Now, I understand the reasons ‘why not. It isn’t that walking for an hour cannot be pleasurable if one is so inclined and the weather is agreeable. It can even be relaxing and have direct positive effects on our brain. But to take this on as a long trek and as something that would provide physical benefits, the research has shown that after about 15 minutes repetition ceases to have many (if any) results. Living as I do in a climate that is rainy, damp, and foggy, walking outside is not often a positive experience. Walking in a gym for that length of time is less than helpful for strength building and boring! So, I have abandoned both inside and outside walking for more than 15 minutes at a time. Evidence has shown that these short walks once or twice a day are more beneficial than a prolonged walk.
I have been thinking about this blog on and off for weeks now and it is difficult to summarize where it has taken me, in spite of the fact that I know it is directly related to pain control/management. One interesting experience I have had recently involves an elderly couple who have found pain control using a ‘foam roller’. Their stories about this apparatus intrigued me and so of course I had to immediately research the topic. It turns out to be something I had used in yoga classes two decades ago and in fact, own a modified version of it myself. Basically, it is a very hard bolster that one rolls on to release soft tissue. One must be very strong to avoid pressing on bones or joints which could be damaged during the process of using it. Foam rollers seem to have been popular two decades ago in Canada among some physiotherapists, influenced by the yoga community and the “core strengthening” craze. In fact, it is a process of self-massage. According to the manufacturers, one must not have chronic pain to use it safely (that is, the pain must be an acute episode), nor any history of cardiac problems, such as taking heart medication, high blood pressure or blood clots and the person must have the strength to avoid coming in contact with joints or bones. Fortunately, this couple is very strong physically, does not have a history of any cardiovascular problems, and can avoid damaging themselves using the foam roller. For them, it has been highly effective in eliminating pain from their lives. Those of us with fibromyalgia could not safely use it, given our weakened muscles, and so that story ended, along with any other kind of apparatus intended to help with pain management in fibromyalgia. While it is possible for those of us with fibromyalgia to build strength, it takes a while, particularly if we have had the condition for a long time. Obviously, the younger we are the better our chances of developing strength at a faster rate.
I know that all of us have heard of various strategies that could help with pain other than medication and off we go to try a new technique or gadget only to find we have a flare-up. I believe it is part of our hope for release from pain that we find a so-called expert, or become enthused with the excitement of someone who has had a positive experience with pain control that leads us down a particular path. I think I have tried it all: acupuncture, yoga, Chi Gong, Chinese herbs, homeopathy, chiropractic techniques, massage therapy, naturopathy, reflexology, flower essences, jin shin, tens machines, osteopathy, Feldenkrais, the list is endless and of course expensive. Finally, after many years I have found that the issue of pain control lies within our own brains. It becomes our own responsibility to use the strategies that those neuroscientists and physiotherapists who have done the research and found the most effective ways of managing the pain on a daily basis. Once again, on my bandwagon: light exercise that can progress to more moderate, movement, meditation, relaxing techniques, quiet, peaceful hobbies that bring joy and are creative for us are among the strategies for those of us with fibromyalgia. Not easy to incorporate into our daily lives, not frenetic, requires discipline, avoidance of alcohol, caffeine, and sugar, keeping stress to a minimum are the ways in which serotonin will be released and pain will be managed if not obliterated. Struggling with pain and taking on the view that it must be conquered cannot do much except exacerbate our anxiety. The idea of being in pain can become hard-wired in our brains; we need to believe in our own capacity to change this image of ourselves and work through it. For me, it involves working on optimism rather than pessimism; not an easy task!
The issue of pain management is difficult for the layperson. I am challenged to understand the vast amount of research on pain and its relationship to the nervous system. The work is undertaken by those in the Noigroup, Soma Simple, Adiemus, Diane Jacobs (all found on FaceBook), and those I have previously cited bring us up to date on the neurobiological evidence, but it is nonetheless not easy to comprehend.
I have been muddling through this one by David Butler and the other books suggested to me by Nick and other international physiotherapists, occupational therapists, and neuroscientists for two years now and it has not been an easy task. This month being National Physiotherapy month, Nick was interviewed on TV this a.m. For several years he has been awarded “The Best Physiotherapist in Halifax” by The Coast magazine. I have been most fortunate to have learned so much from him and some of my other colleagues at Dalhousie University with whom I worked closely for many years. These are evidence-based, PhDs with their own research programs, many of whom are bringing about change to old ways of thinking. I wish for all of you a physiotherapist who understands and, even more, one who can explain neuroplasticity and pain. If one is stuck in the old physio tradition one cannot proceed further unless time is spent by the therapist explaining in lay terms the ways in which one can train the brain and the strategies to employ so that one does not always rely on professionals. If your physiotherapist/physical therapist does not, or cannot explain neuroplasticity to you, search for one who can. It is the way of the future for those involved with helping people in pain. My own fibromyalgia flare-ups have decreased by half during the past two years; for that I am grateful. But of course, we are now faced with two dilemmas. First, what if a person cannot afford a therapist? For them, I would advise that they either go online or get the books I have highlighted over the past several years from the library. It is difficult to do reading by oneself, trying to understand the technical language of pain and the brain. PBS, among other TV stations, has presented many documentaries on the brain which are very helpful. FaceBook information is also available and up-to-date research is forthcoming on FB from the experts around the world. The second issue to be addressed is how to do strengthening, including aerobic exercise without becoming extremely fatigued. Once again, 15 minutes twice a week can suffice initially, longer only becomes repetitive. Those of us with fibromyalgia are subject to great fatigue, so we must proceed with caution and let our common sense guide us. The high-tech gym with the ‘appropriate’ fashionable clothing has been part of the hype of the youth culture. The less we feed into it the more sensible we become. Frenetic activity, wild perspiring, hour-long puffing is not the sign of a healthy person, but rather one who is pushing to excess. Walking is still the cheapest and best way to begin a regime of getting fit.
“When you’re finished changing, you’re finished”, Benjamin Franklin
It really is all about the brain and how new pathways can become established and old ones can be paths less traveled. So many reports their fibromyalgia began with an accident, surgery, violence, or another episodic event that was physically shocking to the nervous system. Some call this ‘primary fibromyalgia’. However, fewer report that major life changes like marriages, parenthood, divorces, job losses, and changes, loss of loved ones, chronic illnesses, widowhood, moves, menopause, retirement, and even significant birthdays, among many others, can be equally as traumatic to the nervous system. Like long-term anxiety and stress, generally, these are slower processes for fibromyalgia to develop and are often referred to as ‘secondary’ fibromyalgia.
The brain needed to adjust to a new life circumstance usually does not do this very quickly. Uncertainty about the new transition develops and for the person with fibromyalgia or prone to it, anxiety brings about hyper-arousal of the nervous system, coming from a place of fear. This is not about the separation of mind/body, but rather to point out that while an assault on the body can bring about fibromyalgia for those who are predisposed to it, so too can a crisis in transitioning from one aspect of life to another. It’s about seeing the new with some degree of promise and hope. It’s about seeing the rainbow somewhere on the horizon, even if there is grief, pain, and sadness associated with the change.
It is a good exercise for us to record all the major transitions and major traumas we have experienced during our lifetimes and how we processed them in our minds. Some were with joy and hope while others were with fear, grief, and panic. In fact, many were felt with mixed emotions. But understanding how our brain led us down a certain path will result in insights that led to fibromyalgia. A good therapist can help; talk therapy cannot be underestimated.
“Sometimes we stare so long at a door that is closing, that we see too late the one that is open”, Alexander Graham Bell
In so many ways we are fortunate to have access to valuable information which then allows us to take more control over our own lives. I can only speculate about what it must have been like for those who suffered from fibromyalgia for decades without a diagnosis, recognizing what the causes were, or how to work with chronic pain and fatigue. Even worse would have been the cost of trying to find someone who could alleviate the worry. It would have been a time when communication with others who suffered from the same condition (that is, those of us with a highly sensitive personality trait, causing our fibromyalgia) would not have been as accessible.
Before medicare in Canada, it is likely that people could not afford to go from doctor to doctor hoping for a name for this invisible dis-ease. It must be dreadful in those countries whose citizens are not insured and cannot afford visits to physicians. Still, in every country in the world, not just those who do not have access to health care for all, many of us with such conditions as fibromyalgia experienced health professionals who are dubious about the very existence of this dis-ease. So, the question arises: what do we do when we encounter those who do not believe there is such a syndrome as that which we live with day after day? How do we deal with the constant demands of others who do not understand that while we look healthy we are not able to participate in the usual activities that others enjoy? It is only ourselves who can take control of our own situation with those doubters. It isn’t easy.
Summertime when there are crowds at concerts, museums, or on beaches where the noise level can be high becomes especially problematic. It can be overwhelming to even attend family barbecues/reunions when there is perhaps music and laughter and our nervous systems then go into overdrive. Children, young nieces, and nephews, grandchildren whom we love, are by their very nature easy to arouse and excite us.
Sometimes it seems like we have to be in a cocoon just to find peace, while at the same time feeling happy and depressed simultaneously at gatherings that should give us joy. The difficulty is how to set limits on those occasions which over-stimulate us without offending anyone or embarrassing ourselves. Finding a physical space where we can escape for a few minutes and calm ourselves is not often easy, but is so very important to our well-being. Those of us who recognize that the few moments of quiet are necessary to avoid flare-ups must become experts in finding that private space. It’s all about setting limits to what we can tolerate, which at times seems impossible. It is then that we must bring on our strategies, such as taking time to deep breathe, finding a place where we can do a minute meditation, and avoiding as much as possible those who are particularly excitable and cause us to go into overdrive. Practicing these schemes of relaxation can open doors for us that we once thought too difficult to enjoy.
The summer is almost over. Time to gear up for the cool autumn! Relax, breathe, take time to open up a new way of being in the world, think positive thoughts, and move that body as much as possible.
” My friend…care for your psyche…know thyself, for once we know ourselves, we may learn how to care for ourselves”, Socrates
Fibromyalgia does not allow for any kind of scientific tests to aid in making the diagnosis of the syndrome. It is not a disease, but a broad spectrum of ‘symptoms’ which appear to be somewhat universal, that is, primarily pain, chronic fatigue, sleeplessness, and often depression, but always present as chronic anxiety.
The official diagnostic wording was made in 1990 by a Committee of the American College of Rheumatologists, lead author Dr. Fredrick Wolfe, who has since suggested that fibromyalgia is actually a response to stress, depression, and anxiety (quoted in Grot and Horwitz).
While I subscribe to this view that fibromyalgia and its sibling chronic fatigue, along with other invisible diseases like multiple chemical sensitivities and post–traumatic stress disorder are not actual diseases, there is a danger in classifying those of us with these conditions as hysterics who cannot manage our lives and have given in to the role of a sick, mentally ill person.
Nothing can be further than this in my attempt to understand how it came to be that those of us with FMS/CFS are highly sensitive to our environments/stimuli/other people’s needs. Yet, even in categorizing ourselves as highly sensitive persons(HSPs), we risk the danger of further medicalizing ourselves and becoming labeled as people who are in need of help through mood-altering medications. We can become labeled as HSPs and then become fodder for the pharmaceutical companies hence in a category of the ‘mentally ill’. This is indeed a conundrum as we ARE highly sensitive persons with easily aroused nervous systems, but the help has to come from within ourselves, not from medications that help alter our emotions.
The book Diagnosis, Therapy and Evidence Conundrums in Modern American Medicine, by Gerald N Grot and Allan V Horwitz, points out the lack of pathobiology in FMS and CFS. The pharmaceutical industry has been the victor in all of this and we have fed into it unwillingly in our effort to alleviate our suffering and obtain some degree of relief. So many write to me citing the numerous medications you are taking. The side effects are frightening. What is to be done?
I know of no other answer than that of the neuroscientists who have worked on strategies to change our brains. We can’t change societal views of people whose nervous systems are highly in tune with their environments, but we can change our responses to stimuli. I have read recently that with the work of the scientists who are making tremendous advances in understanding the brain that this will be the first generation of people to be able to look into our own brains. IMAGINE! WE WILL SOON BE ABLE TO SCAN OUR BRAINS! Brain-based therapy! We will be able to scan for both positive and negative psycho-social emotions! And haven’t we tried to do this in the past? A friend pointed out that mood rings (I had one!), then bio-feedback (I did that in the 1980s!) were both attempts to ‘read’ our emotions. While this scanning of our brains may seem to be frightening to many (especially neuro–ethicists), it could be a relief to many, since we are frequently experiencing thoughts of disaster and impending doom from the hyperactive amygdala. Maybe the time will come when we can change those impulses that lead to negative thoughts and images through mechanical means. In the meantime rather than hoping for others to work with our thoughts and emotions, we can learn to become our own change agents.
The intriguing research and theoretical debates about the brain are related to the mystery of how we develop consciousness, and in the case of fibromyalgia, how does our consciousness relate to our real-life experiences of pain? Philosophers, neuroscientists, psycho-neurologists, sociologists, and neuro-ethicists are studying, researching, and debating this mind/body relationship and the nature of consciousness. For those of us who are interested in finding out how our consciousness manages to get to our brains to communicate that we are in pain, the whole world of science/philosophy is exploding in this regard. Not soon enough, nor very understandable for the general public. But this book may provide some easier-to-comprehend answers (Christof Koch, author).
“Everybody gets so much information all day long that they lose their common sense”, Gertrude Stein
To write that I am frustrated, angry, and discouraged over the recent hoopla this week in the news from the U.S. Institute of Medicine (IOM) report on Chronic Fatigue Syndrome is to be putting it mildly. As is usual with someone who has CFS and fibromyalgia (FM) I awoke several times last night. During those wakeful periods, I wanted to write this blog with great haste in protest for whoever would read this rant from me. I have to admonish my readers that the report is not to be viewed with great enthusiasm. The IOM state that CFS should now be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such and for which a medication can be taken and our conditions would be cured. But as I have repeatedly written over many years, this cluster of symptoms that make up a syndrome cannot be ‘cured’ with the usual allopathic or alternative medicines. It is far more complex than that. Hunts for viral, bacterial, and hormonal causes have been ongoing for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?
The first indication of this awakening of the American health experts to the reality of CFS and FMS came to my attention from an article by André Picard, whose articles I respect and admire tremendously. It is from the newspaper The Globe and Mail, Tuesday, February 17, 2015 A11, and is in regard to Chronic Fatigue. While the f word (fibromyalgia) is only mentioned once it is nonetheless aligned with chronic fatigue and I have conjoined the two for many years. In fact, there may be quadruplets involved here if we combine multiple chemical sensitivities (mentioned by Picard) and PTSD. Happily, Picard calls CFS and FMS a ‘disorder’ in spite of the fact that the U.S. Institute of Medicine has reported CFS as a disease. I continue to call it a ‘dis-ease’ or a syndrome and will not give in to the claim or possibility of a microbe causing disease, in spite of the fact that it does indeed cause secondary illnesses.
The second sighting of this American report was noted on February 21, 2015, on the CBC news. So now, after decades of the suffering of millions of people worldwide, the voices of those of us with several of these invisible, but alike, diseases will be legitimated. Furthermore, the way in which it is to be a bona fide condition worthy of being taken seriously is to call it an actual disease.
So, how closely are CFS and FMS related? I have debated this for many years. I have searched, researched, and contemplated the relationships between the two as well as what I once called Gulf War Syndrome, shell shock, battle fatigue (now called Post Traumatic Stress Disorder) and the elusive Multiple Chemical Sensitivities- all of which are invisible, said to affect women more commonly than men (with the notable exception of PTSD) and cannot be diagnosed with standard medical tests. My conclusion for all of these disorders is the same as it has been since my book and all the blogs I have since written. THESE ARE CONDITIONS THAT ARE CAUSED BY A HYPER-AROUSED CENTRAL NERVOUS SYSTEM IS HIGHLY SENSITIVE PERSONS. These disorders are not exclusive to highly sensitive women but to men and children as well.
It is important to discuss the commonalities among the four diseases of CFS, FMS, MCC, and PTSD. I will do so using the four main ‘symptoms’ discussed in the Picard article:
1) An inability to engage in pre-illness levels of activity that persists for at least six months, accompanied by fatigue. While generally this ‘pre-illness‘ is predominantly applied to CFS, the other conditions can be not only related to illness but are often attributed to traumatic events such as car accidents, violence, and situations that cause the nervous system to go into hyper-arousal.
2) The worsening of symptoms after any type of exertion (physical, mental or emotional). This symptom, post-exercise malaise, is seen as key. This symptom is highly evident in both CFS and FMS but can also be seen with MCC and PTSD.
3) Un-refreshing sleep. Therein lies a commonality among all the disorders.
4) Cognitive impairment. Once again the four diseases experience this to a greater or lesser extent. Also known as “brain fog”.
5) The inability to stand upright for other than short periods of time, a symptom is known as “orthostatic intolerance” which is extremely common in CFS and FMS and may or may not affect the other two disorders.
While it might seem as though there is a great difference between MCC and FMS to CFS and PTSD, in fact, the following is a list of the many symptoms of MCC and PTSD: muscle and joint aches and pains, fatigue, rashes, itching, memory loss, and confusion, all of which are common with the other three mentioned syndromes. As with the other disorders, anxiety, panic, inability to tolerate loud noises, bright lights, excitement, highly reactive to smells, frequent digestive disorders, and so on are the exact reported symptoms of all four. In short, all the mentioned diseases are similar to such an extent that it is difficult to differentiate among them. They remain controversial, lack any kinds of standard tests to help with treatment, and have a gender bias (with the notable exception of PTSD, because of the nature of the higher number of men in the military who have faced combat). One important distinction, however, is that people with CFS have been known to recover, unlike FMS sufferers.
These are all Medically Unexplained Illnesses( my italics; also see other blogs where I have discussed this issue)with symptoms that are common to all and cannot be separated from one another. As I have discussed repeatedly, the realm of study and research for these conditions should be with the neuroscientists who have made tremendous strides with brain studies regarding pain and the brain, and various strategies for changing the brain. Among them which I seem to be presenting over and over again are: mindfulness meditation, light exercise, talk therapy, deep breathing, avoiding caffeine, and especially helpful is taking on activities that are new to you, creative, repetitive, innovative, and enjoyable which will stimulate new neural pathways in the brain, and finally paying attention to situations which bring on added stress and living in as calm an environment as possible.
I liken the nervous system of those of us with all these invisible syndromes to an elastic band that has been stretched to its limit. We are never cured of this highly sensitive nervous system. Whether or not it is nature or nurture cannot be proven. We can only work with the hand we have been dealt. Almost, if not all of the hundreds of people, mostly women, whom I have heard from and made comments on this website, or interviewed personally have been overly empathetic, intuitive, and caregivers in one form or another. I have not been surprised at the number of nurses who have FMS and CFS, gay men, as well as other marginalized people whose lives have been filled with trauma. Some say that after a period of time CFS can be cured without lasting effects. I cannot attest to that, but I can say that those of us with FMS have lifelong challenges. I confess to not hearing from men in the military. I can only speculate that these are highly sensitive men whose nervous systems have been stretched beyond endurance.
So it seems that the IOM has been tasked by the U.S. Department of Health and Human Services, the National Institute of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, the Social Security Administration- all to examine the evidence base for CFS. What on earth are they to do? Are CFS and FMS just now being discovered? Have they ever read any of the comments on this and many other websites exploring the commonalities among all of us worldwide, suffering from these conditions which are so closely related? What do they hope to find that wasn’t explored decades ago? It is not a disease! There isn’t a cure for a permanently hyper-aroused nervous system, always on alert and hyper-vigilant. We are highly sensitive people who, as Elaine Aron discusses in her many books, are like canaries in a coal mine. ( Please note: Aron does not equate the conditions I have just discussed with the highly sensitive person; her extensive work is about the type of people we are and she does not discuss specific disorders associated with this type of person, instead she believes it is a ‘gift’ to be an HSP; the theoretical relationship is mine and I do not want to misrepresent her). We have rich and complex inner lives. We startle easily; we process sensory data differently than other people; our nervous systems differ from the general population. We are highly empathetic and often intuitive beyond what is usual. This entire trend to label us as a disease entity boggles my mind- when I am not in a state of anger. I have to remind myself to breathe…
“If there is nostruggle, there is no progress” , Frederick Douglass
There is a tendency among those of us with chronic pain to be ever so watchful on days we are in pain or extremely fatigued. We take it easy on those days and begin to wonder if we will ever be feeling well again. But, oh! On those days when we are feeling well, our tendency is to be optimistic, think we are cured, and immediately do more than we should. We then pay for it with a big flare-up. It is usually one step forward, one step backward. The struggle continues. Sound familiar?
How do we train ourselves to pace? What is that high all about when we feel as though we can overtake this burden? How do we make sense of feeling great one day and lousy the next? What is it about us that cannot seem to predict what will bring on a flare–up if we overdo it on a good day? Ah, I think it is because we remember what it once felt like and that part of the brain becomes excited remembering BEFORE fibromyalgia. We want more of it; we deceive ourselves that we can go beyond the limits of yesterday when we did not feel so great. It is a series of ups and downs. We refuse to listen to warnings that one cannot be almost bedridden one day and up for a hike the next. Our brains deceive us; we become weary of thinking of ourselves as ‘pain people’. We crave normality. We want to go to that family gathering that inevitably overstimulates us. We want to take an hour walk instead of a 15-minute one because the day is so nice, filled with sunshine. The sky is the limit on what we can do on that magical day. Then the sky falls down and we are once again down and out the next day or the day after that. Our brains have not yet recognized that if we continually fail at some task, repeating it will mean we get the same results!
There is though some hope if we understand the ways in which the brain has the ability to create new neural pathways or change existing ones. ‘Cognitive Therapy’ which focuses on teaching a radical shift to our thoughts and feelings, showing how to live each moment with more awareness, is an evidence-based program that can help with the tendency to overdo! In the meantime “Keep calm and carry on” as the old second WW saying goes! Calm is a balm for fibromyalgia!
I have brought on another pain attack- again! I have overdone it with social situations that have caused anxiety and resulted in overstimulation! This time the pain in my left foot is excruciating. The reason? I wore something other than the sneakers that are my daily companions. No, I did not wear high heels, but nonetheless, they were not my regular footwear. There are many times I think I have to wear something on my feet that are a bit more dressy. Yet, I am now known to wear funky sneakers to most places, so why do I conform and wear ‘regular’ shoes when I know my body will rebel? Given that my muscles (like all of us with fibromyalgia) have become weakened over the years because of my inability to sustain regular exercise, I have found that supportive shoes are the best answer to stability. For that reason, I have recently chosen to brighten my days with colored sneakers that bring a smile to most people. But, without them my legs and feet are painful.
I recently tried to describe my pain to a health professional but found I did not have the language or the energy to express how I lived day-to-day with something that is invisible to the eye yet affects my quality of life. Chronic pain has a life of its own. It is powerful, unceasing, and challenging. Doing something unusual like changing shoes, can bring on a flare-up that lasts for days. The changes in my muscles as they react to change elicit a response that is painful, I become afraid of the pain because it is associated with shoes that are unusual. And so, the cycle continues. My central nervous system signals the brain that there is danger and a threat is perceived. I have begun thinking that wearing all shoes, except the sneakers, is anxiety-provoking and painful. Therefore I have foot and leg pain, particularly at night after wearing ‘dress shoes’. Perhaps it is because I have polyneuropathy?
Specialized nerve endings, called “nociceptors” (pain receptors) respond to potentially damaging stimuli by sending signals to the spinal cord and brain. This causes the perception of pain. Chronic pain, which is the plague of those of us who suffer from fibromyalgia, is caused by the rewiring of the nervous system and is called central sensitization. It is a learning process that is generating chronic pain. This habituated thinking pattern of mine requires that I look at this sensation of pain and what is happening to my mind. It is important that I explore and face mindfully this central sensitization by exploring how the amygdala is always ready to give a signal to flee to that which is not even a potential threat. As I have learned in mindful meditation, it is important to live with the pain rather than fight against it. Change, even in shoes, is difficult for me. The amygdala is quick to try to avoid and escape from what is perceived to be a threat. The more I resist, the more the fear persists.
The pains that I experience in the legs are akin to peripheral neuropathy, that is, damage to the body’s peripheral nervous system. It causes muscle weakness and pain. The more that I experience fear the more accompanied it is the leg pain. While neuropathy is common in such conditions as diabetes people with fibromyalgia experience the same symptoms, which are pain, tingling, pins and needles, and weakness. I have these symptoms in both legs and arms as well as sharp shooting pains often in the back and shoulders. Unlike the diabetic however, the pains are not constant in fibromyalgia as they are in diabetes. I have to confess that Gabapentin does help. Unfortunately the side effects of weight gain and groggy head are very frustrating. There is evidence that people with FM have small-fiber polyneuropathy, but the evidence is inconclusive at this stage of research. There is still much to be learned.
HOWEVER, ONCE AGAIN WE ARE FOCUSSING ON SYMPTOMS OF AN ALREADY COMPROMISED CENTRAL NERVOUS SYSTEM RATHER THAN ASKING OURSELVES THE MOST IMPORTANT QUESTION: WHAT HAS PRECIPITATED THIS FEARFUL/ANXIOUS PERSON IN THE FIRST PLACE?
My theory is that we have experienced trauma from either an early age or in utero, or later in life, we are already a highly sensitive people (HSP), and subsequently, our CNS is generally always in a state of hyper-arousal similar to those who suffer from Post Traumatic Stress Disorder. Sexual or emotional abuse, surgery, accidents, war, loss of a parent- the list is endless regarding how an HSP experiences and lives with trauma. Furthermore, triggers or flashbacks bring on flare-ups.
There are many who believe that reducing the fear/anxiety rather than addressing the pain is the answer. But, if one has lived with severe chronic pain for most of her adult life, changing the brain is not an easy task. To add to my anxiety my body is now chronically unconditioned. I don’t move in a way that brings about good balance and posture. Muscles have atrophied and are weakened. I need frequent massages, physiotherapy, and chiropractic adjustments. Maybe then I can hold up the Leaning Tower of Pisa in Italy once more (note the sneakers I had on!) These pictures are difficult to watch when I am in so much pain. The question always arises: will I ever walk in comfort again as I did just a few short years ago?
