“There is nogreater agony than bearing an untold story inside you”, Maya Angelou
A very interesting interview a while ago on CBC Radio with Michael Enright as host. Dr. Suzanne Koven, who is a Massachusetts General Hospital Writer-in-Residence and a primary care doctor, writes, teaches, and speaks about the healing power of story writing.
She was Enright’s guest. It has allowed me to ponder upon my own need to write about fibromyalgia and in turn for others to comment on my blogs. It becomes a shared community of those of us with chronic pain; it also allows me to reflect upon how I came to this point in life when I have finally completely accepted that I have a lifelong challenge ahead of me.
I frequently review sites about fibromyalgia and while many come and go I wonder at my own need to continue, year after year, to write about the many issues that plague many of us living with this invisible dis-ease. I often become discouraged because most of the searches and comments on an old blog about itching seem to pervade the site, which was and continues to be the most popular topic, much to my surprise.
Of all the symptoms that challenge us, maybe it is itching that has the most physiological and psychological angst associated with it. But, are we all alike in this daily struggle? Or, is there one symptom that hounds us more than others? For me, it is undoubtedly pain. Next, it is the lack of stamina that distresses me since I was once a high-energy person. The past is always there waiting for us, reminiscing about what used to be and lamenting about physiological losses. I have a need to uncover how it all came to be that past events trigger the present.
Life can send us reeling, presenting blows we never recover from, presenting memories that are dependent upon where we are in our lives. Still, I do recognize that life memories are often unreliable. While yet, it is in the storytelling and narrating of my life that I can now see a pattern, a series of events that overwhelmed my ability to deal with sensitive receptors. I reclaim some of this loss through therapeutic writing.
As a mindful writer, I am working to get out of my head and into my body. I know enough ( or not enough!) about neuroplasticity to realize that who I am is malleable and can be changed. The past and the future are not the presents; they are created in the brain. While the past impacts my present, I must “re-engage the healthy self” (Koven interview). This happens for me when I begin ‘narrative therapy’. I don’t want to get stuck there and dwell over and over, but allow my brain to rewire itself so that I no longer see the world in black and white.
I enjoy long comments from readers as it reiterates my view that there is healing power in storytelling. But, in the end, there is nothing but the present moment which, for me, is where I live in springtime. The past is behind me and while it shaped me I have to learn how not to let it affect my catastrophic view of the future. Let me enjoy the beauty of the season.
“In three words I can sum up everything I’ve learned about life:it goes on”, Robert Frost
My friend has become my guru for updates on research regarding pain. I take hope because of her personal struggles with the issues surrounding living with acceptance in lieu of catastrophizing. Daily pain is exhausting, depletes our energy, and leaves us with a sense of hopelessness. Each new symptom (and there are many) can be like taking one step forward and two backward.
How do we continue? As she says in her October 18/15 blog: “After all, life doesn’t stop just because pain is a daily companion”. The same could be said of the other myriad of symptoms we experience.
Chronic pain has become one of the leading reasons for doctor’s visits, workday losses, increases in pharmaceutical approaches for controlling the symptoms, and the emergence of Pain Clinics. Health care professionals are trying many strategies to ease the suffering of millions of those of us with a less than good quality of life.
Among them is the American law professor, Toni Bernhard, who documents her journey through the maze of adapting to and living fully with chronic illness. Her newest book is a practical and honest account of the ways in which a person living with chronic illness can turn her/his life around. As I have discussed so frequently Mindfulness Meditation is integral to her work.
It would seem that among the experts of chronic pain, the advice is very similar: exercise moderately when able, meditate, learn to say “no”, avoid being around friends and family who do not support you, and always keep in mind the idea of ‘pacing’ yourself, practice self-compassion and above all learn to live, rather than to be subject to defining oneself as PAIN! Living in the past or looking into the future is counterproductive. Being in the moment is the only way to live life fully.
It has taken me a long time to stop thinking like an invalid, rather than to acknowledge that I will live with pain but it will not define me. I will continue to do things I enjoy, with limitations, rather than waiting for the pain and fatigue to overtake me. But, oftentimes I give in to hopelessness particularly when my energy is depleted. It is somewhat difficult to accept that monitoring myself is the “new normal”.
She is the author of many Blog writes: “We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue.” (October 18, 2015). She goes on to say how complicated it is to work around what is considered to be “normal” within daily living. Life never proceeds along a linear straight path without daily fluctuations.
What is normal on a snowy, blustery, isolating day differs from a lovely autumn day when getting around outside is less problematic. Some things are beyond our control; while others are of our own doing. Trying to organize a dinner party for a dozen family friends at Thanksgiving is a major undertaking. But taking a drive in the countryside to leisurely appreciate the beauty of the day can be soothing. Yet, both are what we might enjoy, and having to exclude the one that would cause stress and anxiety might produce feelings of guilt and sadness.
This time of the year when there are such things are “scarecrow festivals” that make one smile can be just the medicine one might need.
But serving and preparing a dinner for guests can result in catastrophic thinking as one tries to be the perfect host. Yes, a gorgeous pie was made for our Canadian Thanksgiving dinner in October. Granted it was made by my granddaughter, nonetheless, the work required for a dinner of twelve can be overwhelming.
Sensibly, I was able to say that I was tired (the fatigue that only those who have it can understand) and would be the only person present who would not be doing any of the work. In the past, I would have exhausted myself trying to manage the entire affair. It takes a great deal of courage to be present at an occasion and not organize and take care of others. It takes old age to recognize that I can do both. Go for a ride to see the colors; go to a Thanksgiving dinner and sit back, watching others, being thankful we can be there and not feel overwhelmed with anxiety about how we should take charge.
After my month-long participation in June at the Pain Clinic, I slowly began to realize that those of us with chronic pain fit a profile that is very similar to one another. Many of us are prone to catastrophizing about our symptoms, often give in to depression following a bout of anxiety over some new experience of pain, and generally cannot remember that life varies often from hour to hour, certainly day today.
That there are challenges for us there is little doubt, but the term chronic implies that it is permanent, without any joy left to be looking forward to, little wonder we give in to a sense of despair. Anxiety- looking to the future with a catastrophic outlook. Depression- looking back on the past wishing we could change what we have become. It is not living in the present moment.
How many of us have fearful thoughts about the future? I do often. In Mindful Meditation seminars we are taught that thoughts are not facts. Believing I cannot ever again undertake a task that gives me joy is a challenge I face daily. We often have to compromise but sometimes the brilliant ways in which we have modified our accomplishments can be very satisfying.
I have been reading how Buddhism defines destructive emotions like passion, aggression, and ignorance. I can relate this to fibromyalgia. Unless we become the expert in our own lives we will continue to suffer from ignorance about this syndrome with which we have become afflicted. It is the inability to see the truth about our relationship to this over-stimulated central nervous system.
If we continue to treat fibromyalgia with aggression rather than kindly as part of our Self then we only exacerbate the symptoms. Without self-compassion, we will continue to treat ourselves in ways that continue to cause more suffering. Then there is a passion which is the desire for a different life than what we have. I am not a Buddhist nor an expert on philosophy, but one of the basic concepts is that of suffering.
It can be translated into anxiety or stress, the mental form of which can be suffering from growing old and illness both of which are endemic to fibromyalgia as we wonder if this pain will last forever and how we will manage it in the future. We all suffer, it is part of the human condition. However, often fleetingly, there is joy.
So, on this grey November day when the leaves have almost all fallen from the trees and we wait for the first snow (at least in my part of the world), I have to practice what I preach. Stop and enjoy some of the beauty still left from the autumn colors.
“My own brain is to me the most unaccountable of machinery-always buzzing, humming, soaring roaring diving, and then buried in mud”, Virginia Woolf
To live a life in a state of high anxiety, boarding on panic is common among those of us with fibromyalgia. We anticipate pain, fatigue, muddled thoughts, and a myriad of other symptoms almost every waking (and sleeping!) hour. It has become a habit that often seems unable to be broken and depression and fear set in.
Often accompanying this is the brain fog, the confusion that often does not allow us to focus or to think clearly. Some describe the sensation as “fuzzy brain”, “spaced out”, “dreamy”, “brain farts” or just plain forgetfulness. Whatever the label those of us with the condition know it is often accelerated by overstimulation, lack of sleep, pain, stress, and anxiety. The new medical term is now “dyscognition“.
It would seem that the brain has difficulty in responding to stimuli because of a hyper-aroused central nervous system, a phrase I keep repeating over and over again in my many blogs. These habits of the brain are strong and require discipline that is challenging to break free from since they have accumulated over many years. Stress and all that it encompasses is, in my view, the main culprit.
The statistics regarding the self-described symptoms of fibromyalgia are staggering. They range from 10% to 15% of the population, while it is suspected that the numbers are even higher for unreported cases, particularly in regard to cultural, racial, and gender differences. It is likely that numbers will soar as more veterans of war are open to discussing the frustrating and often agonizing syndrome.
When I often read the symptoms reported by veterans most of whom are diagnosed with PTSD, I immediately recognize what we have described as fibromyalgia. Somehow though the label of PTSD seems to be more acceptable to the experts than fibromyalgia. Nevertheless, in my view they are identical twins, and changing the names and labels is not particularly useful. Certainly, however, dyscognition is common among those of us with PTSD and fibromyalgia, particularly when over-stimulated.
Many of us report pain as the most debilitating of symptoms while others suffer worse from confusion, lack of clear thinking, or fatigue. Most would agree that whatever is the most challenging it leaves one with a sense of despair and anxiety. While we have been told, for example, that pain does not mean damage, we nevertheless find ourselves in a state of high anxiety, wondering what this new type of pain might possibly be.
If we have overwhelming chronic fatigue the same questions arise. The struggles with everyday living result in extreme discouragement. It would seem that this entire multiplicity of symptoms can in and of themselves bring about more stress and confusion regarding our state of being.
While brain research is advancing greater knowledge than ever before, there is still much to be learned. However, it is known that chronic stress triggers changes in the structure of the brain as well as elevated levels of cortisol (the stress hormone). This in turn causes fewer neurons than normal. A cycle is created whereby the brain is in a state of “fight-or-flight” as the pathways between the hippocampus and amygdala are not functioning normally.
The struggle becomes that between the gray matter and white matter of the brain. Gray matter ( packed with nerve cells) is responsible for thinking, computing, and other such functions. White matter is composed of axons in a communication system between brain regions. It has a white fatty myelin sheath and speeds the flow between the neurons of the brain.
It is thought by some researchers that prolonged stress results in too much white matter. (You can read more about this in D. Kaufer et al in the February 11, 2014 issue of the journal Molecular Psychiatry). Kaufer writes: ” You’re creating a brain that’s either resilient or very vulnerable to mental disease, based on the patterning of white matter you get early in life”.
While these ideas are somewhat discouraging there are several ways of lowering the cortisol level: movement and mindfulnessmeditation, the most commonly cited and the old mantra I have been writing about for several years.
We can only work with what is now commonplace knowledge among brain experts, that is, the brain is akin to plastic so it can be changed. By using techniques of daily practice of mindfulness meditation we can learn to live in the present, not anticipate the future or dwell on the past. We can stop, breathe and think, live in the moment. We can refocus.
When we reach the depths of our despair believing that there is no hope WE can change our approach to our challenges. It does require effort, but we can do it, there seem to be little others can do for us; it is up to us.
Along with the disciplined practice of MM is that of movement, whether it be just walking, QiGong, yoga, or Tai Chi, the brain will respond in a positive way. After all only we have control over our own brains. We can change those neural pathways.
I have, of late, discovered another strategy that reduces stress and that is adult coloring books. It is indeed a mindful practice. In particular, I have enjoyed coloring a mandala. Having seen one being built and then torn down in Arizona many years ago I became intrigued with the concept that a mandala is to be destroyed after being completed as a way to show the impermanence of life and…everything changes. Colouring, that is the somewhat making of one, reminds me that change is possible and the intensity of focussing on the diagram has been very soothing to my aroused nervous system.
I have hadFibromyalgia since mid-2006, acquired during a long bout with a viral infection in my central nervous system. I used Neurontin, Percocet, Cymbalta, and Lyrica in the following 4 years to manage my pain. While on Lyrica I slept a lot and ballooned up like a, well, balloon! I did get off of Percocet, though, and had no pain. Despite that wonderful result, I went off Lyrica and back to Neurontin, using Tramadol and Flexeril for pain. Then it just went to Flexeril, and only when I was working. I had, through diet, exercise, state of mind, what have you, got my Fibro to a pretty manageable place. Life was looking up. I had plans to pursue a master’s degree and was working as a makeup artist more and more. We even decided to get a puppy life was so grand and on such an upswing (plus Yorkie was bored), so we rescued Porkie. And then I entered what one would call a manic phase, although never having been a diagnosed bi-polar, and had 2 strokes centered around the purging of haunting memories of a youth unaddressed. I was put on Prednisone to manage the treatment of the rare and serious Vasculatitis that had caused the strokes and preceded to turn into a complete manic speed freak. That was really interesting. But I had NO pain on Prednisone and I was flexible and could snap-crackle-pop myself into place and my muscles were not tight and painful. I have weaned down and tomorrow I take my last little dose and I am off it. And I can barely move.
I feel like a 27-year-old trapped in the body of a 93-year-old. It hurts just to be. I can barely make it through my morning walks and can hardly stretch, any part of my body is tight and in pain. Just the thought of getting up from a chair was an excruciating vision of screaming feeling. So much damn feeling! I have completely deconditioned, although how I am not sure, and have no stamina and am so constricted and just in freaking pain! It is interesting, this turn of events. This wonderful place life has deposited me again. When I got through the worst of Pancreatitis I had a plan and was going to march forward in my life. Then I got CFS that led to Fibromyalgia and I had to get that monster under wraps. It took everything I had and then just when, once again, I am on the cusp of re-building, I stroke twice. And that bumps me back to the beginning of Fibromyalgia, with a mentality of having just come off some pretty high doses of energy-pumping steroids and a deep and powerful frustration for how many times can one woman start over?
I have faith I will get the mean and ugly Fibro dragon back in her cave, for with all I have been through there is very little that can keep me down. But I am tired of this! I feel like a port city that keeps getting hit with devastating, tragic, and wreckage-producing natural disasters. I just want to feel good again, but have to be patient. I will feel good again, it is just gonna take some time and a lot of work…
“When anxious people anticipate something bad about to happen- such as being confronted with creepy pictures of snakes or spiders- their right frontal insulas go into overdrive”,Blakeslee and Blakeslee
Many of us with fibromyalgia can remember childhood as the beginning of a lifetime of fear, and anxiety. Since there might have been a significant childhood episode that triggered this dis-ease called fibromyalgia, it stayed with us while other troublesome events in our lives piled these generalized feelings one on top of the other.
It is as if we accumulate and store anxieties in our psyche (frontal insula of the brain) until we can’t differentiate between everyday events that aren’t fearful and those that are. We feel things too deeply. Our empathy capacity is filled with overload. We cannot respond healthily to any form of drama or excitement.
While there are some of the beginning signs of this in childhood, such as a tendency to have symptoms such as fainting, hyperventilating, or to have panic attacks, it appears as though we are usually able to live a normal life until a major crisis brings us full on to fibromyalgia, generally in middle age. Rather than this being a beginning, it is usually the end of the lifelong tendency headed for the finale. A central nervous system that can no longer keep the brain from responding to this build-up of anxieties in highly sensitive persons is the way I describe fibromyalgia.
While I have repeatedly written about the treatment for this devastating syndrome (NOT A “DISEASE”!) I cannot claim to know of a permanent solution. Meditation, avoiding stress and anxiety, light exercise, movement, talk therapy, massage, and undertaking a ‘hobby’ that is repetitive, creative, and new to you are all strategies for a better quality of life, but there isn’t a cure.
Talk therapy is extremely important, particularly with an experienced professional. Understanding our ‘triggers’ is especially helpful. People with fibromyalgia have too much empathy and we must learn how to reign it in as it seems to pour out of our bodies, or more appropriately stated, pours pain into our bodies. In the book The Body Has A Mind of Its Own by Sandra Blakeslee and Matthew Blakeslee, the authors write:
Research now shows that your brain is teeming with body maps- maps of your body’s surface, its musculature, its intentions, its potential for action, and even a map that automatically tracks and emulates the actions and intentions of other people around you.
Given that we respond not only to our own fearfulness and anxieties but that we respond to that of others it is little wonder that we are acutely aware at all times of that which is going on in the world around us, which is extremely overwhelming these days.
Consider an alternative: rather than focusing on the dreadful news of the day, the despair of so many who are suffering, political leaders who lack empathy, massacres, and the fearfulness/anxieties of many, ourselves included, should we not focus on a few brief moments on the beauty of the season? We have to learn to live in the moment and tend to our own pain.
“Courage is resistance to fear, mastery of fear-not absence of fear”,Mark Twain
All of us with fibromyalgia suffer from repressed emotions and are coping with overstimulation and sensory processing sensitivity. Never has it been so challenging as it has been in the past months with the chaos in the world that we hear of almost no stop in the media. What is to be done?
We can’t continue to watch the news on a regular basis without feeling the brunt of worldwide fear, anxieties, hatred, rage, and turmoil. We also can’t hide in isolation from outside influences. We are situated betwixt and between our own personal lifelong anxieties and fearful of the volatile and chaotic nature of current politics.
I have grappled with the knowledge that we with fibromyalgia have certain personality characteristics in common while at the same time there are many differences among us. Many of us are introverts and need to be around people on our own terms; we crave peace and quiet. Others are extroverts and at the same time are easily overstimulated. But, we all have in common our anxiety, hyper-vigilance, and an overly emphatic, highly sensitive nature.
For those reasons, we are sensitive to injustice. We are intuitive about the good and the bad in others and quick to judge ourselves, particularly if we believe we are not courageous. We live in fear we will be found lacking in strength of character, deriding ourselves over even mentioning our chronic symptoms of pain and fatigue.
Living with a chronic dis-ease usually changes our lifestyle and abilities. While in my previous life I was ‘out there fighting for issues of social justice: women’s rights, LGBTQ issues, race, labor, and worker’s groups, I can no longer dredge up the energy, nor do I have the physical ability. From these marginalized groups of people, I would find kindred spirits as they too would no doubt suffer from fibromyalgia in great numbers.
But I leave the struggles to the younger generation although this generation has little to hope for and so little to believe in. My thoughts go to my grandchildren and the chaos they have inherited.
Given that people with fibromyalgia have exceptionally sensitive (some would say pathologically so) central nervous systems, our inner turmoil leads to flare-ups along with depression and anxiety. Thinking about those who are suffering in war-torn countries and no doubt have developed PTSD, who live hopelessly with terminal diseases and despair, who face living potential massacres, even in their schools, I have little compassion for myself living in a peaceful country with universal health care.
I live in a country that is ranked 6th on the international index of democracies. I am so privileged to be Canadian. I am white, heterosexual, and not poor. Yet, happiness isn’t a natural state for me. I don’t trust it. My fury at injustice must be turned to self -gentleness and I must stop imagining the darkest possible scenario.
Currently, the volume in my central nervous system is turned up high. So, hope is not an easy trait to develop. Then I watch those younger and more fit people who are resisting injustice and I experience a surge of willingness to detach from the bonds that keep my central sensitization in a state of upheaval and anxiety. I am practicing letting go and living with a bit of hope.
” When things get really bad, just raise your glass and stamp your feet and do a little jig”, Leonard Cohen
As I have been limping along these past few months following hip surgery I began to have foot pain, a condition I had never had before. I was speculating about the cause. Too little walking of late? Plantar fasciitis? Shifting from soft sponge shoes (GoWalk) to sneakers that are heavier? Shuffling after the surgery? The possibilities are endless. No one can tell me what the issues are that inhibit my walking and cause almost shock-like pain in arches and the top of my foot.
Once more I was in a quandary and begin thinking it was just a fibromyalgia symptom. Why not? I find myself blaming all my woes on this devilish syndrome…not a disease but a dis-ease of the central nervous system. It affects all my muscles, joints, and body parts so the feet are not immune. This is a dangerous state of mind. One can have other conditions that cannot be blamed on fibromyalgia. But, the puzzle persisted. Should I try other shoes?
I have been having reflexology which is very soothing and comforting. Foot massages are lovely and I do them myself. Nonetheless, pain in the arches and tops of feet persists. I cannot find any research on fibromyalgia and foot pain. Then alas! I was referred to the Chronic Pain Clinic where I met with a wonderful registered nurse and a phenomenal physician who explained to me (once more!) about degenerative disc disease and lumbar spine pain.
I learned (once more!) about pain from these discs which can radiate down the legs and feet. Aha! Aging is not for cowards. One thing leads to another and it is a matter of extrapolating, yet joining together the dots of the body’s complex, yet wonderful central nervous system and its relationship to the brain and even the feet. I suffer from low back pain and of course, those bulging discs radiate pain down the legs and feet, made worse by the hyper-aroused central nervous system.
The staff at the Clinic tell me that the majority of their clients have fibromyalgia. When I gave the physician my short version of fibromyalgia he said it was “well stated”.
Do we need more of an understanding of the physiology of pain (and other symptoms) of this fibromyalgia syndrome (central sensitization)? For those of us suffering from chronically overstimulated nerves ( in lay language) all we want is to find ways to live a better quality of life.
So, once more the treatment: meditation, walking, light yoga/chi gong/tai chi, avoiding stimulating foods like sugar, alcohol, caffeine, talk therapy addressing past traumas which are responsible for these conditions, and avoiding stressful situations or those which are too stimulating. In short, a change in lifestyle while recognizing that our central nervous systems are not going to ‘recover’ completely.
So, what about my sore feet now that it is established that my spine, which does have some abnormalities (ah, but we all have this degenerative disc disease as we age!) is sending messages to my brain that walking hurts my feet? Well, there is some degree of help through paravertebral blocks which may temporarily help with leg and foot pain, but I was advised that fibromyalgia clients do not do as well as others with disc disease, for all the reasons cited above.
Nonetheless, I am happy there is the possibility I will be walking for longer periods of time without foot and back pain! I will walk for short periods of time like 15 minutes, several times a day, and sometimes supplement this with my trekking sticks. “Hope springs eternal in the human breast” (Alexander Pope).
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.
“I base most of my fashion sense on what doesn’t itch”, Gilda Radner
There isn’t anything more comforting to me than cloth that is soft and soothing. Mostly, it is cotton that gives me a feeling of being in a cocoon. Since the most popular blog on this busy website is about itching it has brought to mind the ways in which we can reduce the itching and scratching (the “Itchy & Scratchy Show” from The Simpsons is brought to mind) of fabric that does not bring comfort.
In an effort to “change my brain” regarding pain, I followed the advice of experts many years ago and took on a project which was creative and new to me. In addition, it is somewhat repetitive, also part of the triad of characteristics that make up this endeavor. Quilting was my choice of a new project/hobby. Never a sewer it was indeed a steep learning curve but it brought me into the realm of fabrics.
I found myself in shops that were new to me as I walked among the bolts of material that were either comforting or irritating to the touch. It was then that I finally understood why I have never been a fashion queen. I am only at ease in soft, cotton fabrics, otherwise, my body is ‘itchy and scratchy. Rashes, tingling, and burning will develop if the clothing I wear is not soothing to the touch.
When my oldest son was a toddler he would take a piece of new clothing and rub it against his face and if he did not like the feel of it he would say it was ‘picky’ and would not wear it. It seems as though this is hereditary but maybe not! Raised in the 1970s he and his two brothers were a product of that terrible acrylic, flashy and scratchy clothes for boys. Nylon, rayon, and other non-natural fabrics were the bane of their existence.
Raised in the 1950s myself I remember the unpleasant sensations of the crinoline skirts, tight waistbands, itchy dresses, and uncomfortable high-heeled shoes. I would itch after wearing a crinoline and anything tight, in particular nylon stockings and later panty-hose. High-heeled shoes were another pain-evoking dilemma for me.
Currently, I am embarking on making a quilt for a friend from African fabric which has been in her home for many years from her working days in Africa. The dyed (done by hand) material is soft and enticing. I could imagine the lovely draping and amazing feel of the soft fabric on my skin.
I am certain that all the itching and subsequent skin problems that we ‘fibromyalgia persons’, (mainly women) experience are no doubt exacerbated by irritating fabric against the skin, make-up that is poisonous, and shoes that affect our feet in later life. Is it little wonder that more women than men experience itching and scratching until the skin erupts? Added to this is the pressure women are under to dress fashionably which usually means uncomfortably.
The fashion industry is the second greatest polluter of the environment after oil. Not only is it responsible for pollution of the earth but it also pollutes our sensitive bodies. Do try a day without makeup and nail polish (poisonous substances have been found in nail polish that can affect the endocrine system and potentially the reproductive system, The research in this area is ongoing).
Spend a week in soft, loose,non-irritating clothing, avoid chemicals in the form of hair dyes and makeup, give up the heeled shoes, and note for yourself if it helps with the itching and rashes. Above all, it is our central nervous system that will enjoy the vacation from what is considered fashionable ( note: uncomfortable). It is primarily men who determine women’s fashion although as it is often said: women dress for other women, not for men!
This could be more complex in the area of transgender and fluid orientations nonetheless, for all humans comfort is paramount. We can all redefine what is fashionable and how we present ourselves to the world if we demand clothing that is healthy for our bodies and not made from toxic fabric.
Taking care of our skin, the largest organ of the body will reduce the amount of itching and rashes we experience as persons with fibromyalgia – the dis-ease of the central nervous system.
The nomenclature of Fibromyalgia can be known as: “Central Sensitization”, “Post Traumatic Stress Disorder”, “Cycles of Over-Exertion-Relapse”, and “Chronic Fatigue Disorder”, and now a new term: “Systemic Exertion Intolerance Disorder”- all with the same characteristics. What’s to be done so that we can explain ourselves to others while so many labels of these invisible syndromes abound?
In fact, do all these terms mean the same thing? Are they bio–psycho–social in nature yet present with symptoms that are almost identical? The more I read, live with, and experience these conditions the more certain I am that they are linked under the umbrella of “medically unexplained symptoms”, referred to as MUS. It appears to me that there is less understanding of the linkages than ever before as new labels appear. How can we separate the ‘bio’ from the ‘psycho’ ‘social’? Are they all neurological conditions?
Fibromyalgia (FMS) and Chronic Fatigue (CFS) are no doubt, identical twins. It is rare to have one without the other. Pain, malaise, sleep disorders, brain ‘fog’, digestive disorders, anxiety, fatigue, dizziness, and pain affected by exertion, among a host of other symptoms affect the person to such an extent that the central nervous system becomes overly sensitized/ hyper-aroused. Extreme reactions to a vast array of environmental situations or over-exertion plague the person with FMS and CFS and are known triggers that bring on a flare-up.
But wait! People with Post Traumatic Stress Disorder (PTSD)experience these same symptoms: physical pain, sleeping difficulties, dizziness, fatigue, digestive disorders, triggers that are known as flashbacks, hyper-arousal of the central nervous system, anxiety, and depression make up the countless list of challenges that face the person with PTSD. Is this condition a cousin, a sibling, or a triplet of FMS and CFS?
Now to the next ‘syndrome’ ( a list of symptoms that do not in and of themselves make up an actual disease). This appears to be the biggie these days- Central Sensitization (CSS). Is this the mother who has spawned these neurological offspring? Her personality is highlighted by a history of anxiety, depression, pain, fatigue, psychological trauma, heightened pain affected by movement, and over sensitivity of the central nervous system.
Is this the term that makes these conditions more acceptable to those in the health professions? It sounds more ‘scientific’ and medical. It fits a ‘bio’ interpretation and covers the ‘psycho’ and ‘social’ aspects of the other siblings. Is the psycho the result of a Highly Sensitive Person (HSP) that can make many uncomfortable, and therefore to be avoided? The ‘social’ is something we have to live with every day and not a welcome one for the health professionals with whom we have contact.
As can be seen, I have more questions than answers. But, there is little doubt that whichever label we identify with we are HSPs with a hyper-aroused central nervous system, and there are millions of people facing the same kinds of daily challenges.
