Neural Strife #1: The Sum of it All & Less Would Have Been Lovely!

This blog is a personal journey about dealing with Fibromyalgia and my personal struggle with the ongoing neural misfiring disorder, and the mechanisms and methods that helped me to live a full and happy life, against all odds. Well, I never liked defeat so I muddled along until I found my path to mindful living!

Also, this is just a work in progress ... so take it with a grain of salt, pepper, curcumin or what ever the fancy... cheers!

This is an ongoing saga.... to be continued (06/26/2026)

Preface - Inner Monologue

The lingering, somewhat anticipated thought escapes!

“No! You… Will.. not!” Focused and with deliberate tension, no, you will not… the thought; the mind over matter. Then,

“No, I will not, …again…!”

Muttered through clenched teeth as I am testing my hands’ mobility only to notice the flare that’s more and more bubbling up through the surface of my dermis and gradually of my conscious awareness. At first, it’s a subtle unpleasantness that seems to emanate from somewhere within the tissue.  Depending on other factors, it bubbles fast, nearly instantly, or over days, extensile in nature through the body, with a languishing quality. As of today, the perception of my sensation is like a distinct strand of fibers or a vein that seems to be wiggling through my intercellular matter and signaling a sensation of being inflamed. Maybe, it is just one thin fiber within which threads itself from the metacarpal area, wrist bones, up into the body’s lower elbow region. Throbbing, pulsating, insisting, just noticeable enough today, to be annoying. Not yet fully established as pain but generating the anticipation of more to come.  As the sensation protrudes toward the body’s surface, however, I fight; Inwardly I intone my mantra with more, exaggerated determination, so to combat that other lingering thought, the one that haunts me with despair,

“NO, I WILL NOT! No, I will not, will not!”

Nevertheless, this experience continues, as any pressure on my left hand’s joints and tendons signals a feeling of disturbance, a sensibility similar to the  experience of brokenness, suggesting on the uninitiated tendinitis?  But I know, it is not tendinitis. The again, do I? The sensation that is not there, but distinctly I have the perception thereof, messing in my head, confusing that which is there and that which is not - yet again, I feel it distinctly.  Sometimes more, sometimes less.  The days when the pain experience is not there have already retreated into my memory as the omnipresence of undue pressure and tension pervade cognitive processing and I have to willfully remind myself, ‘this too shall abate’.

Let’s pause, though, and ponder the painless periods,

Never Give Up! Never Surrender - Jumping High at 58

the phases I am experience sensational normalcy: First off, indeed, there are periods that are pain free and I can behave carefree then; At these times, or often enough, the memory of pain withers and lets me be, while never  truly wiped and gone from recall, distant enough to not interfere with quality moments. And when it does return, it shows itself differently again in another part of the body. You gotta love it’s intermittences, featuring unpredictability in its timing, capriciousness in its duration, arbitrariness in its severity, if not whimsical in its loco manifesto:(1) The erratic nature of when and how long, and the where - arguably, why??? Will the pain manifest itself localized or fanning out, will it be radiating, or just be miscellaneously be in unrelated spots here and there? Am I experiencing the sensation of discomfort just close enough to the surface of awareness, or will it race, bounce, and pounce, just like a brute, stomping around my neural network igniting muscle tissue, tendons, joints and somehow bone structures.  No matter what form it takes, I still think vehemently against it,

“Definitely, No!”

Note (1): Latin, locus ‘place’; manifesto ‘pronouncement’ - the object case in Latin seems to offer another layer of emphasis - in case you were wondering!

The strong, resilient, optimistic side does.  On the other side of consciousness, in the recesses of my mind, I also whisper, faintly, with a touch of whimper, “Not again!”.  The dual track mind, which is sometimes more like a scream of exasperation, agains the other me, the I which reminds myself over and over, this too will pass!  Inside me, sometimes a part of me gives up as the constant fight against yourself is exhausting, especially as the bouts of pain usually aren’t solitary events but bring its favorite companion along, a comorbidity, called minor depressive disorder and general anxiety that add a layer of utter fatigue over the psychological profile; for good measure some irritability as well, though that is not necessarily a clinically disorder - just an additional symptom, and a faulty design in my personality composition.  In essence, the whole cocktail will simply wake up the grump in me.  As it unfolds, the depression is an energy sucking companion that seems to drain me from my serotonin reserves and can cause notions of defeat and exacerbate the bout of undefined, circulating, pulsating, and most of all annoying pain, as it comes with impaired mobility and severe sleep issues, as this ache and pain loves to disrupt sleep patterns by being present.  And yet another so beloved (irony, I use a lot of irony) symptom.

So the circle begins, or is in full course - one never knows.

I have been defeated a few times before, dangerously so.  At those times I just didn’t have it in me anymore to go against my own physiology, and that experience of defeat corrupted that which makes up my psychological facets: my resistance, the different parts of me who are fighting over dominance; the enthusiast and never-give-up me v.s. the fatalist who has experienced it too many times and submits to the notion of,

‘Why bother, I cannot overcome it anyway!’

The pain keeps creeping through the body, visceral, palatable, omnipresent, and yet, the actual cause is illusive, cannot be pinned down, keeps us guessing whether something indeed is wrong or whether, once again, it is all ‘in my head’?

And that’s what it comes down to!

“No, it’s not in the head”,

and yet it is.  It is not something we make up, but it indeed is something that is fabricated and misinterpreted in our brains and the origins are as multifaceted as a crystal in brilliant sunshine, flitting like a butterfly through physical systems, and like the concepts of the multiverse, each flutter can result in a variation from one universe of experience to another.  While I won’t go much more subatomic and quantum field physics than this, (for now at least 😌) the correlation between the whole and the minuscule individual particle are remarkable.  The Schrödinger Cat as being alive or dead, being there or not; entanglement, all that part of biology creates an amazingly varied and frustratingly hard to establish, uneasy to read anamnesis - the history of one’s health.   Now here is the thing - I have been afflicted since 1997, or at least that’s the first time I realized something was seriously out of the norm, and many a times was conflicted and screaming at the universe for doing this with me in my early 30s - but then again, I am an artist: filmmaker, writer, dancer, name it; I am a psychologist, though only in training, not certified nor practicing: and I am also an educator by profession. The first category comes through talent, imbued - not much I needed to do, I say with a happy, impish smirk. The middle category I came by through my own general interest which by now encompasses years of study, exploration, teaching, and hell yes, experience first-hand.  The last one seems to be also an innate gift which determined my choice in life. All three show my areas of expertise which have been fine tuned over the decades - curiously enough, that creative contemplation on the human condition makes this journey incredibly fascinating to me, like a my personal case study in my very contained ‘self-laboratory’. 

The psychologist in me has pieced and teased out the many aspects of this disease as it manifests itself in this female body - with (at times) the appropriate distance of scientist and participant - relationship. Arguably, which makes for fascinating conversations in my head, with myself, and on occasions, when I forget myself, mumbled out aloud at times, adding the charming ‘mad scientist’ attribute to my outward personality.  Trust me, I own this label now as a batch of honor. (2) But because of that occasional differentiation between me and, you guessed it, ‘me’ (scientist/patient) I have become very knowledgeable about it, intimately so, and came up with a couple of thoughts and techniques to not surrender to the seemingly inevitable, the mysterious disorder called fibromyalgia.  Welcome to this bizarre journey of an Aristotelian approach of ambulare and observare - walking in the natural world and make observations within.

Note (2): It should also be noted that “I” am a most willing participant in my own case study - a term of note: all that is revealed and discussed is a one-case study only basis. There might be relevance to a larger audience, but, aside from scientific elements that I include, the experiences detailed are solely subjective and cannot generalized.  But someone may emphasize and extrapolate in reflection of his/her/their own experience.

This is as much a narration of the journey, with its many stories helping to provide context about fibromyalgia, as it is a humble guide of the biological implications, shedding light how this disorder manifests within me and what are probable causes in my case.  I cannot emphasize enough, this is ‘my’ case, as fibromyalgia is still too vague to pin down exactly.  It shows up in many people with many difference faces and causes.  So, while this is not a ‘this is it’ and ‘this is how you treat it’, it maybe help for others to start working with their own narrative and make connections that help explain and maybe modify the disorder’s expression to some degree, or at least one's relationship with the disorder.  The idea to write up this narrative came about not only by my passion for writing.  I write a lot (as you might have figured by now). By extension, I talk a lot, but usually I communicate in stories. I draw inspiration from observation of the world, and clad them in humorous parcels of knowledge, and I utilize my passion of creative writing and my expertise of visual storytelling and filmmaking, as well as psychology to bring facets of an entirely internally experienced life to the surface and contextualize them to an extent to current science. 

The spark to turn my writing into a more shared endeavor was ignited by my dear friend and trainer, Autumn Nelson who has been the recipient of many of my stories and a companion along the way as my fibromyalgia intermittently tries (and sometimes succeeds) to corrupt my never-ending passion for wanting to be healthy and obviously stay happy.  She never gave (nor gives) up on me when I am waning in my resolve.  Her empathy and expertise in physical education, body-and-mind relationship, and nutritional guidance helps me usually to rebound quickly, well, sometimes in wobbly increments, but her perky personality usually gets through the grump part of my brain and facilitates within me a gradual readjustment of my misfiring neurons, finicky fibers, and bristling bones.  I am immensely grateful to have a friend like her whose resolve is to help others to live a healthier self with compassion and faith that elevates one even in the most dire of times.

Along with the storytelling biological and psychological explanations and hypothesis are included in this narrative to provide some context based in facts, or - well it is fibromyalgia - assumptions.  These assumptions are my synthesis of all that I have experienced, learned from professions, researched, and then was able to put into scientific sense.  Yet again, while I do apply knowledge and expertise, this is a highly subjective story and cannot be taken as face value for another person.  What my friend Autumn suggested and I like to take her up on it, is hopefully providing others a gateway to do their searching and to find some understanding, maybe some way of dealing.  This is not a guide nor is this a guru’s revelation providing you with a ‘how to do", but maybe this can be an inspiration to start your own journey of discovery and give you the stamina to not give up.  That part of fibromyalgia, the shroudedness in mystery and guesses, the somewhat unpredictable intensity and timing of it, and its hidden causes, are energy draining and can make the lonely fighter forget to fight on.  We know now, we are many who are dealing with this and as such we can learn from each other and get the resources to not give up. As one of my favorite comedy movies states, “Never give up! Never surrender!”  (Galaxy Quest 1999)

Others to thank: My most beloved husband who has been on this journey with me for more than 2 decades with his unwavering support and love. Dr. Ruth Sorotzkin MD, the first one who truly listened to me and assured a first reemergence of my true self; Dr. Dina Kiseleva MD, another physician who took me seriously and whose intervention helped me to thrive again.  Dr. Edward Clark Cullen MD, who took the research to the next level for me and worked on finding some cause and explanations for my near-fibromyalgia diagnosis.(3) And finally, Dr. Christopher Murphy, my current physician who never gives me the impression I am not real in what I am experiencing and continues to encourage me to continue my path of exercise and taking life with a grain of humor.  

Note (3): we’ll get to that a bit later…

NOTE: I have not consulted these specialists to integrate them as contributors.  All doctors have worked with me or are working with me, but they have not specifically added their expertise to this writing.  I am mentioning them because they were and are instrumental in my wellbeing, but cannot be held responsible for any or all I am stating here - - except that I am eternally grateful to have crossed their path and was granted their compassion. Rremember, it is my personal journey.

1- Introduction: The Context of Fibromyalgia and Modes of Mental Processing

Let’s start bizarrely: So, living with Fibromyalgia also has its perks.

Note: In case you have not noticed, therefore I mention it, I use occasionally humor, exaggerations, or well measured sarcasm in my writing, my personal mode of dealing with the cards I have been dealt with. So please bear with me - all these humorous commentaries are intended to self-reflect on me.)

So, to Fibromyalgia's 'perks', and you may say,

“Hu? Come again?”

O.k., while this may sound like a counterintuitive comment, let’s think about it.  If you have no pains generally and your life just floats on normalcy, most of us really wouldn’t appreciate the pain-free moments or days, weeks, or months in your life.

It’s a mode of approaching this kerfuffle that I am in.  If I don’t spin my thinking into more manageable gems, if I do not doctor my cognitive considerations, if I adopt a ‘woe is me’ attitude, it will dampen my resilience and my innate resources to counter the noticeable effect called pain on my body.  Mind over matter does pay off!  Rest assured, I am not as debilitated by fibromyalgia as many of my peers who have been grappling with this during their fibromyalgia-infused existence, but it’s bad enough and it is a constant engagement with my self - a fairly self-centered existence.

Mind over matter.  I consider myself less afflicted, and I do believe this has as much to do with my ongoing focus on not to give in to a sense of defeat or the believe it is unbeatable. And maybe because of my ongoing reflection and resistance to giving in, my urge to not just endure but to get strength from my natural resilience,  I may experience this whole dilemma less severely - who knows?   Do I swing in my determination? For sure, and my husband, my doctor, and my trainer know all about it.  Fact is, I do fight this disorder every day of my life to allow for a good quality of life. With constant activity of my body, whether simply walking, or specifically exercising, I not simply wake up my body, but shake it out of the funk, all to initiate the flow of my innate biological mechanisms that enables my endocrine system into stimulating serotonin, adrenaline, and endorphin production etc.. My mind says,

“Get up girl! Get going! Get into the spirit of things are good!”

Of course, there are the periods when all my efforts are experienced as futile.  Again, the thought we need to keep in mind, is to prevail, to not only weather your own devil in disguise ( defeat ), but to tell it off. To work through it and that I mean literally.  If you can work your body, work out the whole physical (and psychological) you which breathes, moves, exists, in some way or another; if you listen and accept that you don’t have to give in, give up, you are already a step closer to take charge: Mind over Matter.  Do it moderation, though, the active listening to your body and movement motivation, as we don’t want to exacerbate the pain, but to control the pain level experience of it! Fibromyalgia is as much about to become in-tune with ourselves,  learn about every facet of your body’s workings and understand your body’s natural defense and immune systems.  A tall order, but achievable and eventually just about as second nature as it can get. And yes, the surreality of this self-obsessed day to day, this ‘me’-undertaking feels occasionally like a highly elaborate ‘moonwalk’ through your neural system — untethered bounces to which the rules of normal gravity do not necessarily apply.  On a good day, like Alan Shepard in 1971 you swing the golfball miles into the air (4) - it feels awesome as it is a unique feeling to do something with so much elan, so little pain.

But sometimes after you took the club to the golfball you may find it hits your own head as the ball has circumferenced our planets companion. The lack of ‘gravity’ makes the outcome unpredictable.  To use this analogy, we, and by that I mean our auto-pilot driven part of the brain (gravity), miscalculated when and how much force should be used to infuse our body with the immune responses to minor occurrences. Rather than vanishing in the dust, it returns the ball with a vengeance, repetitively.  The brain is often times fighting a memory (how strong we hit the club), a fleeting sensation, a ghost of yonder years, with the force of a full-on attack as it would do when we are dealing with a real, current viral infections like influenza or COVID, or bacterial infection and any type of foreign body intrusion. Our own immune system that keeps us usually safe from these influences essentially starts fighting not the foreign body but our own body. At least, that’s part of the story.

Note (4): Alan Shepard, one of the commanders of Apollo mission (Apollo 14), was the first person to play golf on the moon on February 6, 1971. While ‘extra luggage’ was not permitted, Shepard did snuck a customized 6-iron club head and golf balls into his spacesuit. One of the lunar probe tools was used as a handle for the club. As he hit one of the balls just vanished into the dust.  Sometimes, that’s what I feel like, I can prevail with some tricking of the body (with some tricking of NASA) - makes for a beautiful story!

But fighting allows for tweaking and by extension experiencing less of the discomfort (most of the time).   Remember, fibromyalgia wanders through the body, undefined and often times corrupting our resolve; at the same time as its closely related cousin ‘depression’ lurking behind every bout.(5)

Note (5): Truth be told, sometimes it precedes the bout.  When I ‘catch’ it (become aware what is happening), I increase my sun intake, run another lap or two, and jug down another drop of Vitamin D, while engage in animated conversations with friends.  All ingredients that can temper depressive periods at bay.

The thoughts that meander through our consciousness are manipulated by giving-in ruminations, as in ‘not again’- sentiments, ‘doubt’-delusions, moments of ‘is this maybe for real (a pain with a real cause)?’, ‘frustration frizzles’ (frickin’ nooooooot agaaaaaain!’); and because of these thought and feeling processes, we may not follow through with our regiment of ‘fighting against it’.  And naturally the ‘lazy-instant-lunacy’ that sets in and takes our momentum and causes the reactivation of all theses little pain-gremlins to surface and hit the central nervous system and consciousness, most likely starting the ‘giving-in’ to doubt, to frustration, to deflate cycle, sequencing itself neatly to the ultimate ‘giving-up’ conclusion.  Many of my peers end up there; Rarely, but at times, I end up there.

Many end up at doctors’ offices asking, begging, pleading for remedies that may not help, treatments that end nowhere, therapies that allow for checked boxes but not for body betterment.  And we end up with kind-seeming statements like, ‘it’s all in your head’, ‘it’s typical for women,’ or my recently favorite one, ‘it’s part of aging’…. As I recall, I heard the last one as early as when I turned 30-years of age. Clearly it wasn’t apparent to me, that I had already entered the ‘part of aging’ (6).  Also, painkillers are not the answer, not even in the short term as we are giving in in a different way.  I found most profoundly that your mind as well as your body are connected in more ways than one.  It is not only the body telling your mind you hurt.  But in essence, we can become the influence, that is through our active awareness, and  can call it quits.  The psychological impact of fibromyalgia is enormous - but then, our psychological impact is always enormous, we just don’t realize it.  But Mind of Matter does work, but you have to work for it.  And when you are not strong enough, take strengths from others!

Note (6): ‘Part of aging’ cannot completely be negated, considering that biologically we are at peak development at about 25 years of age and thereafter start our physical decline.  This said (and more later) it is incrementally and actually quite slow if we stay with the all-time mantra (and truth - many times empirically researched and tested), to live a healthy and active life in a social setting.

On days like these - the day I addressed in my intro - when I am hitting rock-bottom I have support networks getting me through, including my current doctor (not all doctors are pharmaceutical pushers), and a few in the past.  Support means,  constant reminder that this can be beat but that YOU are the one who needs to do the beating on the forefront.  You are the artillery that battles the individual emanations of this disorder, push it back into its box and seal it off until it finds another breach.  Breaches are caused by environmental factors like stress-inducing work or relationship issues; poor sleeping habits (though that is a vicious cycle on its own); sleep deprived we usually get cranky and look for the comforts of life and take on more sugars than necessary, and so forth.  A generally more weakened immune system, while it may seem like a good idea as we will be attacking ourselves less, is still not a good idea.  The immune system has to be trained to work with us in concert again - fight the bad guys within, that is the gremlin that has made a home inside of us, and as we fight, keep us healthy. 

You cannot kick the gremlin out,(7) not yet at least, but you can trick it by not pouring water on it.   But in most instances this is only possible if we support our immune system by living healthfully and mindfully - stepping back, tuning our stress down, living more in the moment and breathe, than swinging from moment to moment unaware where we are and letting the disorder run rampant without understanding how to live with it.  Yes, this may sound a tad bit too Zen Buddhism, but there are advantages to taking the world, the good world in, and enjoying the benevolent things in life, and find the calm center of peace.  Readjustment is a full-time job and when we finally get there, never to let it go.  I know, this sounds easy but some may say, unattainable.  I hope you can! I hope you can make changes to your life and live a bit more peacefully.  By the way, you don’t need to have fibromyalgia to be hopefully inspired by this!

Note (7): Steven Spielberg’s 1984 production about an unknown cute-looking animal species called Mogwai which have a dark side when exposed to water, and that dark side wrecks havoc on its unassuming surrounding.

I do love cooking and baking - my stress relief, meditation substitute, and reminder of food being a source of good energy.

2 - Marvels of the Macro- and Microcosmos - and some meandering thoughts

Beating the Gremlin, an example:

In 2024, on another of my marathon trips to Europe, to see my family to celebrate my mother’s 80th birthday, I had to confront my inner demons again.  Sitting in coach on an airplane was anything but appealing.  My brain was already jump-starting misery ideas preemptively.  Goody!  And for good measure, I was already in a bad place to begin with.  After a good period a bad period had enveloped my physical pain existence.  Joy!  This said, I continued with exercise, a little less than usual as this bout was also infused with extreme exhausting levels and I needed to get through more grueling teaching volumes than usual - though, let it be known, this was by my own design.  So, I was already achy, particularly jumpy but for the constancy of my lower back.  Arguably a dual sword of discomfort.  The actual weakness of that area in my body, compounded by the need of my fibro to zoom in on it and emphasizing that discomfort in my back.  Again, I worked against it, walking, eating (mostly) healthfully, and exercising on a limited but still regular basis.  On days before I applied capsicum infused patches, and on the flight itself, heating patches to keep my lower back somewhat chipper.  The rotation of the pain was palpable, but I would add mini-stretches in my confined nooks and as soon as I got of any of the planes, walked the hell out of me - and kept motion on my feet. Also, if available I’d walk up and own stairs, just because these were there.  But that did the trick.  While not pain-free, the pain was shoved under my pain-threshold and because of it, I managed the whirlwind of a turn-around trip with 50 hrs of mostly sitting in cramped seating conditions.  And for good measure, as I returned early in the day, I was also taking myself directly to class to teach for several hours before truly arriving home at 4p.m., to the comforts of home and cats.   Mind over matter - I was able to manage.  I was DETERMINED to manage.

Truth be told, I would have preferred a 1st class ticket (or even a business class)… alas, that was not in the budget.  The heating and capsicum patches were in the budget, not to mention, the walking was for free. - silver lining - allowing enough endorphins to be produced to work against the simmering fibro brew within.

In all this, there is some philosophical approach to it:

At 10,000+ feet altitude gliding over the densely cloud-covered Northern Pacific, I try to enjoy the view of this unique vantage point for a non-avian species.  We should recognize this marvel of our human ingenuity and creativity to explore the domains to which we have not been born to.  We should appreciate the many feats of the human mind and skill for what they truly are: little miracles. As we are able to cover fast distances in a fractions of time it would take us if we were per pedes (on foot), we all to quickly forget how special this is to our species, and how far we have come.  That we are able to explore the many facets of our planet, have discovered the biodiversity and its intricately interwoven connectedness, started to grasp the vastness of the universe, and made amazing feats in exploration and discovery, revealing more and more in science, and in our specific case, medical breakthroughs of unprecedented magnitude (though there is so much to explore yet).  

For granted as Dr. Bones on Star Trek indicated, it takes us maybe until the 24th century before we may have a remedy for the common cold, but fact is, we can in many cases cure devastating diseases and alleviate major disorders. We may not have all the answers but our guesses are sometimes pretty darn good. In many cases, that is!  Speaking of our own recent experience, when my husband was again diagnosed with Large B-Cell Lymphoma, stage IV, with lighting speed spreadability and aggressiveness, which was quite different from the one he had 18 years ago, we were graced with the advancement of medical discoveries. What 18 years would have been the end of it all was this time around doable - hard, but because of the nuanced fine-tuning of the chemotherapy, he came through it, alive!  

Sometimes all our knowledge needs still investigation and modified comprehension as some parts of understanding, the underlying causes and triggers, are still in the unknown.  Don’t disregard the triggers, a term I use loosely right now as it can encompass a mere environmental impact like emotional or social stresses to the more illusive little traumas we experienced and have not processed throughout our lives.  The causes can also not simply be defined by our biology or environmental influences like illnesses, airborne diseases etc..  There are so many aspects to understanding human physiology/psychology - the complexity is sheer mind boggling. 

And, returning to fibromyalgia, the unknown is, where many journeys of fibromyalgia, and the many similarly physically expressed disorders like lupus, rheumatoid arthritis, polymyalgia rheumatica (PMR), and hyperthyroidism etc., begin - all which mimic in a way each other and are not necessarily caused by some other form of pain disorder like CRPS (complex regional pain syndrome) or central pain syndromes, which are caused by spinal cord injuries and are in a why identifiable nerve damages - something that we can pinpoint.  Yet again, even with knowledge, it is never that simple for the individual suffering from any of these.

While I am appreciating and musing about my currently very elevated - and as such fleeting existence - I can briefly forget my other, constant yet intriguing experience which takes me from my macro cosmos of flying across the world to the microscopic level of not succumbing to chronic pain.  

Squeezed into this airplane seat is a body that has been struggling for decades now with rather undiagnosed but fairly noticeable bouts of pain.  This affliction budded in my mid-20s and manifested itself in my early 30s, but I may say, it was already subtly present in the many though short-lived mood and well-being swings that usually want to accompany this condition of physical discomfort.  My body was being  primed to become susceptible, maybe.  Prior to realizing that my pain was caused by nothing particular like injury, physical trauma or foreign-body based infiltrators, but just existed within me as part of my physical master plan which had been impacted by epigenetic mechanisms and caused a minor miscommunication within the body, I believed pain events to result from soreness or ‘overdoing’ something, or plain injury - the latter type was usually not diagnosed because it wasn’t there.   I was active, yes, but not necessarily crazily so.  In my youth I trained classical ballet and for years belonged to the local roller skate dance club, competition and all, and I engaged in sports like soccer, volleyball, or basketball, but never got seriously hurt.  To this day I love riding my bike and as a typical German, I walk and walk and walk some more (is part of our genetic/cultural upbringing).  To this day - I’d knock on wood, alas I am in mid air - I have not broken a bone - but for several toes - over the course of many years.  (The toes have the unfortunate fate to belong to me who can suffer from bouts of extreme clumsiness, sigh). This is naturally also the reason for the many bruises I tend to sport, in particular during summer.  So I was a fairly normal kid with lots of interest in physical activities until my early 20s, when I started to do less.  That indistinct discomfort that sometimes overcame me and I believed to be a sign to do less, made me do less.  Also, as demands shifted from being cared for (of sorts) to being self-reliant added a reduction of activity.  But I still walked and rode the bike, when I could.  

Now here is the thing, though back then I wasn’t yet aware of this, the mind is a cunning and tremendously finicky organ which is not entirely under your control, or to put it more delicately, you are not one entity alone.  First of all, every moment of our life our brain processes millions of pieces of information, whether it is our autonomous nervous system input from fight or flight to basic survival functions like breathing or perspiring for temperature control, or whether we are consciously taking in information like news through friends or media.  We are continuously working, our brain that is, and processing everything we encounter.  Most of the processing is done in a split second, including discarding irrelevant information - and be glad for that, as it prevents our brains’s areas of our awareness from getting overwhelmed - and some of it takes time to process.(8) Somewhere along the way your brain and body may make mistakes in remembering, or has it wrong to begin with, and that may or may not cause problems down the road as we meander on our path through life.  This extremely simplified version of our dual and multiple processing existence does not explain much as of yet.  So again, most of who we are is run on autopilot or hidden from us, yet it is a starting point, esp. when you consider that your conscious self has more power than we originally realized.  We just are not ‘aware’ of it - kind-a-bizarre!

Note (8): Just a heads up: Please do yourself a favor and disregard the. medical myth of the 10% use of our brain capacity.  You use it all, all day long, always.  10% may be that which is illuminated in one aspect or another, or that of which we are aware of, but the brain is - next to your heart - a non-stop superhero, fully, completely, intensely active - and all for you alone!

Pain is inherently autonomic: (9) a term I will explain later in more detail with some scientific background, but for right now it means it is run automatically through our nervous system without involving higher function and consciousness to facilitate instantaneous action through reflex actions, while our awareness eventually kicks in.

Note (9): In an upcoming (announced once written) chapter , I will address the central nervous system in more detail.  For right now imagine the body as a major instrument that takes in information and reacts to that information.  The somatosensory neurons are all the nerves that receive ‘information’, e.g.: the eyes take in what you see though light sensitive neurons, and your finger tips have sensors that take in pressure or temperature.  The motor neurons are those nerves that allow the body to react, for example to retract a finger when you touch something hot.

As this unfolds in a nano fraction of a moment, but still slower than the actual gate threshold response through the somatosensory ( intake of sensations ) and motor neurons ( output, that is the reactive part, like moving muscles ), the overall body has already gone into action mode.  In case of injury, the neural system of our pain gateway threshold has signaled “too much pressure”, and starts throbbing, more or less forcefully, but very acutely - that’s when we become aware.  In short, our brain diverts resources to immediate action, before it alerts the rest of us - which includes our awareness.  All this is good when all functions normal.  But as it is with me, the cause of the original injury of pain has long gone, but my brain still reacts, and as it does, it notifies me frequently with quite some vehemence, although sans actual injury, but most like caused by a totally unrelated trigger.

I am not a single case, and I am not even representative for many.  As I mentioned above, my pain history is actually undiagnosed, not for the lack of trying, but for the lack of hitting the right list of positive symptoms (10).  For fibromyalgia to be diagnosed back then, pressure points needed to be ‘register’ as ‘discomfort’ where there should be non.  I met 8 out of 10, so the actual diagnosis is ever so slightly off (11).

Note (10): manifestations within the profile of pain that are ‘there’ instead of symptoms that are absent.

Note (11): Please note: The method of pressure point diagnosis was conducted 11 years ago. Much has changed and might be more accurate, e.g.: pressure points increased to 18 sites on the body, of which at least eleven need to be causing discomfort, and then was abandoned for a more self-reported 22 area tenderness diagnostic.  For more info, see at the end of this chapter.

What we did learn from that exercise is that the diagnosis was slightly off for me - so I did not ‘qualify’, yet my reactivity of my body was and still is more than slightly off.   Go figure!  So going back to the beginning of this chapter, we know so much already but in some instances, what we know does not necessarily fit the individual profile.  Still, encouraged by my husband, by my trainer, and that part of my psychology that is happy-go-lucky and has a hard time giving up, I felt empowered enough to start my path of perseverance. I had some sort of a diagnosis, and I knew and sadly so still know the following very sobering fact, as perfectly articulated on the Cleveland Clinic’s Fibromyalgia website: “What causes fibromyalgia? Experts haven’t found one single cause of fibromyalgia. Many researchers think fibromyalgia affects how your brain and spinal cord (central nervous system) process pain. Your central nervous system becomes more sensitive. This is called central sensitization. It means your body amplifies pain signals, so you feel pain more strongly than expected.” (link below)

Because experts don’t know the exact cause, there’s no known way to prevent it.

And that’s what we are dealing with, a thought, not knowledge and not real evidence as of yet. The unexplored microcosm of our biology - or the biomedical-magical conundrum of the yet to be explored…

So, while I was on my traveling path a few years ago, I decided to tell my story, starting that legendary moment from my 10,000+ elevated, flying throne, which with some discomfort I try to enjoy by keeping my mind focused on not feeling the pain but telling about it.  Another way of dealing with the unknown - it sometimes takes the punch out of it.

For further information on Fibromyalgia diagnostic methods check out the American Fibromyalgia Syndrome Association:

https://www.fibromyalgiafund.org/diagnosis/

The article explains simply and briefly concepts of “Tender Points Criteria” (pressure points), which are focused on four points each for neck, should, and buttocks/hip region, and two points for upper chest, inner area of the knee, and upper forearm/elbow, as well as the reason why it is not often used anymore (or at all).  The article cautions about the pain thresholds that not only are different in gender, but are different for every person.  Currently the main prerequisite for a diagnosis focuses on the duration of the disorder, which “must be present for at least three months.” - I figure, a lot of us may qualify… so there is a bit more to it as well, like the fatigue symptoms, the alertness in the morning, the cognitive abilities throughout the day, and other symptoms.

Additional resources:

New York - Presbyterian 

https://www.nyp.org/healthlibrary/diagnosis/fibromyalgia?lancode=

Mayo Clinic

https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIH)

https://www.niams.nih.gov/health-topics/fibromyalgia

Cleveland Clinic

https://my.clevelandclinic.org/health/diseases/4832-fibromyalgia

3 - An Evolutionary Story - How the microcosm of my world may have had something to do with it ... or not... who can tell.

But first, lets start with a cat picture:

While a cat picture cannot undo that which troubles us, (or a puppy, or a ferret, bunny... fluffy, furry, feathery... your fancy), it surely can take off the edge at times. Just relish in the beauty, or take your own cuddles and do some oxiticin snuggles. And with cat's purring frequency having shown healing properties... win win!

This is Zhurrieh, our peacemaker, and love bug... but now back to the narrative.

Infancy and childhood were equally good and bad.  I can go through the whole gamut of poor parenting skills, abandonment, and the little traumas, to cherishing and loving episodes blessed with nourishing, supporting, and loving environment.  My parents weren’t bad people, just very self-absorbed in their own worlds, their worlds that were demanding.  They definitely were not cut out for each other, nor for tending to their children.  My mother loved each and all of us, my father in his strangely distorted way of seeing the world did probably too, though it may have been more like the notion of a nuisance-causing pets that ‘somebody’ (though not him) had to take care of until they were ‘grown up enough’.  While loving was hard for him to express or show, a few times he could break his shell and be loving of sorts.  You just had to learn the code.  He loved quietly, I think, a different version of love. And in hindsight, now I may see him not only as a person who suffered from lingering mild depression but more so lived on the spectrum, functioning, but socially awkward, removed. He adored his cat(s), and I think he cared for his son deeply in his own way. It was not the love we usually know. He probably cared at times for me and my younger sister too, but he was pretty clueless in how to show love, or how showing love should transpire between him and his children.  For all we experienced, at least the ones of my living siblings, was his constant pensive, grumbling state, deep in lost thoughts, I detached from reality. When you asked him, what he was thinking about, he couldn’t tell, or maybe couldn’t express it.  And reading him proved exceptionally difficult.  In order to do so a person has to be around frequently, to learn to decode.  He wasn’t around. And, sadly so, later I didn’t make an effort to be around him either. 

Two children deceased in childhood, three wives later, and many more mistresses I may add, who may have fallen for that pensive handsomeness, he died purposefully, feeling unappreciated, and not having been given his due in life. And in his understanding of the world he was not understood und felt unloved, so he may have felt relief when he was finally escaping his inexplicable existence.  He was seriously depressed for most of his life, but unaware of it.  I realized it only later as I brought the many symptoms of my father’s family side together to gauge the interconnectedness of genes.(12)  While depression not easily translates into pain for the layperson, there are relationships between the two, foremost mental and physical pain express themselves in the same brain area.  Depression can be mitigated among others with Serotonin Reuptake Inhibitors (simply explained, allowing more serotonin to be passed on from one neuron to the next).  Fibromyalgia, can function medication wise similarly.  The two are linked, not only because the one may cause the other, that is the constant exposure to pain sensations wears the individual gradually down.  My father had no physical pain, at least through most of his life, until mesothelioma caught up with him, a cancer that starts as a growth of cells in a thin layer of tissue that covers many internal organs - in the mesothelium.(13) Then the mood disorder that was prevalent throughout his adult life was compounded by the physical disease he was dealing with, culminating in his wish to come to terms with life.  As he had wished, his gravestone states “That’s It” (Das War’s) - from a day of loving, when my father was truly mirthful after reading out aloud this obituary.  We both laughed and there and then we had a mutual moment. He told me then, several times afterward, that should he ever die, that has to be his epitaph.  And so it is!

Note (12): While a revised, more distanced direction is making its way into the medical understanding of disease, voicing cautionary notes on the influence of genes and in contrast are promoting a more ‘mind-based’ approach, that is that many disorders would be better analyzed through the little traumas we experience than the genetic makeup, I do consider a more synergetic approach.  Excellent works by Gabor Mate M.D./Daniel Mate (e.g.: The Myth of Normal) and Lissa Rankin M.D. (e.g.: Sacred Medicine) splendidly explain the emotional (deprived), environmental aspects etc., of growing up and being grown up that take us away from the more natural approach of flourishing, but I cannot disregard the impact of genes, esp. when I look at the many participants in my family who are or have been dealing with odd disorders of the body and/or mind.  Yet, the authors have enriched my understanding of the interconnectedness of body and mind, and deepened my own story with more genuine knowledge. 

Note (13): Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/mesothelioma/symptoms-causes/syc-20375022,

retrieved Feb 17, 2025

During his life, our family just assumed my father was a melancholic sort of person.  But through the years I observed other versions of depression in my family. It should be mentioned, I am using ‘depression’ towards a wide range of expressions in the individuals, but often times related to mis-regulations of neurotransmitters, serotonin, dopamine, norepinephrine a.s.o.. One of my uncles, the younger, started early on, though an augmented one by a touch of grandeur and entitlement. His depression resulted from a sense of his standing in life. He so very much desired to be someone else, was convincing himself, he was born to the wrong cast, so to speak.  He be-fretted fate most of his life and even though he did experience real tragedy fate did smile on him.  He was never to have children due to a near-fatal accident, and like a miracle my cousin materialized. He doted on her - she was everything to him.  In general, he was a funny, life-embracing person who cared for his family. He had a loving wife, but his mood wore out the luck and happiness and brought upon misfortune, and one day my aunt left him.  His lovelorn attitude toward life, that he was in the wrong place and should be somewhere else, led him to gambling with money and with opportunities - he squandered, in a way, his profession away. The sense of entitlement made him somewhat blind to the nefarious machinations around him.  A gamble that left him close to destitute.  For my aunt, she loved him as much as he loved her, but she left because she could not take the self-pity anymore nor the bickering of not being rich, nor the gambling.  Gabor Maté implies, that looking for love in the wrong places is the result of something that went amiss sometime in ones emotionally-needy (and necessary) time. A truer definition of addiction by Maté defines, 

“Addiction is a complex psychological, emotional, physiological, neurological, social, and spiritual process.  It manifests through any behavior in which a person finds temporary relief or pleasure and therefore craves, but that in the long term causes them or others negative consequences, and yet the person refuses or is unable to give it up.”

(Mate 2022, p. 225)(13)  

The sadness arises from the fact, that my uncle gambled all away that could have made them rich, loved, and give him the standing he wanted - another dimension to his life’s dilemma. He was a good man, a loving and devoted father, a caring uncle, but something within him did not allow him to find his potential.  For years, after he was left behind, he would live in meager circumstances, bemoaning even more so his fate. A person saturated with an underlying complex of social expectation provoked depression which he tried to compensate at times through addiction (gambling), that promised the reward, but defeated him in the end so completely.

My other uncle, the older, was doing marvelously well for a long time, but then fate dealt him a deadly card and his life for 2 ½ decades was in jeopardy by a disease called lung fibrosis that grew ominously on his lungs.  It came to a halt at one point and lingered there, with little advances until it took his life.  The medical professionals couldn’t fight it, just prolong its progress by slowing it down.  He was a high spirited, fun-loving man whose constant physical pain in his mid-life made him bitter, losing faith in what is good and just.  I never blamed him, because I always felt he had good reasons to become bitter. But I also realized that the family’s history was that of depression. The depression made him bitter and did not allow him to come to terms with life and by doing so maybe enjoy that what he still had.  Additionally to his physical dilemma, a possible manifestations of his struggles with life, the relationship with both of his sons was tenuous at best. He had hoped the best for them, but both turned out rather off the norm, one leaning to right wing fascism, the other to drugs.  Again, my uncle was a loving, caring, hopeful person who had used his youthful energy to immigrate to Australia, making his mark.  But life did lay out other plans and as one promise after another faltered, his resilience broke.  All the children of my elders were imbued with one or another form of mood disorder or addiction disorder - looking for something intangible - some form of love, care, emotional stability they may have lost or not received.  For my father and uncles the end of World War II may have impacted their adult happiness.  While they had it in their powers, they somehow lost that grip on life to make them feel content in their midlives.  And in the cousins a similar thing.. we all seem to be dealing big time with it.  At times I feel blessed because the majority of my dealings is quite simply ‘physical pain’.  The mental one I keep a close eye on and under wraps at all time.  

The depression has come down the family tree - we just didn’t know it.  My great-grandmother had, pardon Uroma, a conniving and malicious streak, managing to hurt people within seconds for hours by just opening her mouth.  In hindsight that was amazing.  I have rarely encountered another person ranting so spitefully than her - strange quality to marvel at.  But I think that darkness in her was part of the family anamnesis, just expressing itself again, slightly differently.  Her son, my grandfather was spared most of his life and the only part of his existence that was clouded by this mood-clogging disorder was the last ten years of his life, after my grandmother had passed away.  A never-ending depression of grief.  In both cases again, very different versions and arguable ‘not relatable’ - but then it is.  It has been in the family so strong, and getting stronger.

So, yes, there is history, not with physical pain, but pain - remember pain expression is visible in our brains and in both cases, psychological and physical, it illuminates the brain same area.  There is a parallel world too.  My younger sister’s mood disorder got entangled with a loss of self-esteem and showed severe comorbidity with eating disorders and later on suicidal ideation.   And the grandchildren of my younger uncle showed different expressions yet again, one child with a social-anxiety paired with agoraphobia as severe as they can come, and the other one on the spectrum. High functioning, and oddly enough, more on the happy sides of things - taking after his mother.  Older uncle’s children faired even worse. His sons exhibited early on peculiar behavior patterns.  As youth very unruly, oppositional behaviors, that manifested later in drug use in one and radicalism in the other, with depressive tendencies, alcoholism aggravating it and suicides, with Nazi ideation.

All of these individual histories are skimmed over, but the core has been revealed, a strangely morbid common ground.  How do I fit in this? Do I suffer from depression? Yes and no? My bouts are usually a tad bit too short, an acute one, but even then it does not hold up to depression.  Anxiety had developed over the years for odd things, like flying, fierce weather, fires - so tangibles, and trust me the fires have become very tangible (Oregon).  But also a doubt about everything, world politics-caused and related, I’d assume.  That indeed may be part of ‘maturing’.  But I am usually keeping taps on it and there is that X factor in the female genome that I inherited.  My mother was one extraordinarily high-spirited and good-mood-kind-a-woman.  “Ah, we don’t have the money for the rent, don’t worry”. She wouldn’t, I think, but I did, and for good reasons.  Yet I inherited a portion of that positivism that floats through my everyday experiences and counters the darkness flaring up.  But what the mood can combat, the physical representation cannot.  

My father in center, with his brothers - how prophetic this images seems now, in a way with their serious, gazes toward the camera. My cousin and I thought it 'their cool look', but now it suggests their dilemma with living.

Overall, I can’t help but interpret this ongoing, persistent manifestation of mental maladies through several (recorded) generations, down to predisposition. A predisposition for neural disorders, whether the firing is off kilter or the production of the neurotransmitters is in undersupply or the like.  It didn’t really matter because it is not specific enough, like Schizophrenia being passed on or Bi-polar disorders.  Just a kink in the coding of my genome that would allow for a variety of disorders, a whole family spectrum of potential biological shortcomings which most likely are caused, turned on I should say, by environmentally induced triggers.  I am not saying, it is biology’s fault - for that biological development is way too amazing and awe-inspiring.  But the biological makeup does have a propensity to fulfill its many potentials - millions of combinations along with thousands of possible mutations.  It is not, we are born defective.  We are born uniquely (aside from identical twins), and we are born to be molded to fit natural needs outside our own personal, emotional, even heath needs as we understand it.  In a way, our biology reacts to meet defensively encounters that we are not even aware of, or not instantly, maybe belatedly, sometimes never. Genetically we have the capability to morph, whilst experiencing our life - epigenetic the interaction between environment and genetic makeup of an individual.(14) 

To exemplify: a combination of genes has been passed on from Great-grandmother, to grandfather, to father, to us children.  In my little sister’s case, the loss of self-worth due to a lack of father figure and high, possibly unattainable social demands turned a combination of genes on which probably were the cause for her biological composition to start undersupplying serotonin. Her great emotional security and love deficit experienced early and throughout life, was exacerbated by an otherworldly episode of abduction by our own father (in his world view he felt he was in the right to do so), but left a traumatized mark on her.  As a three/four year old, she had not really known our father, and when her visit was unexpectedly prolonged with an unsanction 10-day ‘excursion’ away from her mother (my stepmom), it left  her rattled.  While she forgot about the incident and later was saddened by the fact that our father never asked for her (whose ever fault it is I never will know), confused a growing girl and later young woman.  So much so that she later refused to be part of any of his life.  An added environmental impression was also imprinted on her, that of not being sufficient in what she was and did.  While intended as encouragement and motivator, the already existing damage caused her not only to feel unloved but unworthy. Not an easy childhood, and at that, she perpetuated it involuntarily so by often times finding people that either ‘confirmed her suspicion about her insufficient personality’, or simply suspected that others were thinking little of her.  It broke my heart as she had to fight all these internalized inadequacies but could not find a way out of it. She saw and experienced it over and over - whether it was really being done to her or whether it was more her mind thinking peopler were doing it to her, it was detrimental to her overall wellbeing.  Again, don’t misunderstand, it is only a facet of her experiential existence, that was unfolding in her mind, as she was loved and cared for by a well meaning mother and a stepdad whom she adored.  But somehow it could not offset the gene’s propensity to start setting a biological adjustment in motion that most likely was meant to protect but turned fully against herself.  She suffered from depression and eating disorders - inadequacies and loss of self-worth; and when rockbottom hit, suicidal.  Intervention helps, but in her case, for now, it has to happen every other year to keep her balanced.  

Now this is not fibromyalgia, but the underlying biological force is in part the production or lack thereof of neurotransmitters.  I say in part as it is, as always, more complex in its medical intricacies.  

For me it was a similar childhood, but my shield was better equipped with resilience.  I was utterly devastated by my parents’ separation, the loss of them both as one escaped for four years into oblivion for me (my mother), and the other went working abroad.  The worst think that happened to me was losing them.  At the same time the best thing that happened to me, was losing them as they handed my guardianship over to my grandparents.  So, constancy was restored, love was infused into my life and the depressed teenage hood was interwoven by amazing experiences, love and respect, and yes, the scorn of the teenager (not my shiny moment in life).  So rather than developing a mentally pronounced disorder, mine shifted, became more somatoform (physical focus)(15), but it took a while.  The irony is, most likely circumstances so arbitrary were the ultimate triggers (of turning on/off certain genes) that it is beyond grasping.  The emotional upheaval was palpable but somehow I was able to contain it most of the time in my youth, and later in life fully take charge.  The most likely candidates for my fibromyalgia manifestations later in life, was not loss of love or the fear of abandonment (alone), but was a tic one day, another bug somewhere else, maybe the cigarette smoke inhaled as a kid in closed environments like cars. The environmental influences on my biology caused havoc and when these legendary pain inducing moments in my life presented themselves, I had not clue what was going on.  The tic?  I was romping around the forests in Bonn (Germany where I studied for literature, media studies, languages).  I had a jolly good time and the tic bit unnoticed.  The other bug, some nasty little bugger that haunts the Australian East Coast got me one night - fever and Linda Blair’s exorcist propelled vomiting - one night, and it was gone.  Being eaten alive by mosquitoes in my 6 months residency there including a prophylaxis that nearly brought me to anorexia nervosa profile (I have a weak stomach, yet my doctor who worried about me did not believe that the medication could have caused me not keeping food in.  Baby food for three months put the pounds back on me).  These were a few of the environmental experiences (and which my specialist here in Oregon probed and tested for).  So instead of taking my childhoods little traumas and turned them into mood, anxiety, or eating disorders, I was grace with little of that, but along with it at one point in my 20s the persistence of pain.  And yes, during my mid-teens to mid-20th there was also a change in what I’d call teenage blues into existential bouts of self-doubt, with propensities of self harm as I feared to be left alone again (my parents had left me as a child, my grandparents had left for Australia in my late teens, my boyfriend was thinking of exploring other avenues then the first girlfriend (me), and being emancipated at age 17 was tough (especially after a very sheltered home provided by my grandparents).  But goody, the mood expression the prevailed for that time changed with the coming of pain.  The tics, the bugs, the smoke had happened already, no pain then… suddenly there it was… so what was that first pain, that precursor of fibromyalgia? Or was it already the thing that would haunt me for the next decades to come, and teach me to fight, and fight, and fight a little more?  We all thought, my knee had gotten an infection, and inflammation. A bummed knee… the saga of pain begins, strangely at the turning point of being an insecure emerging adult turning into a young, quite self-reliant and feet on ground person (well, I tended and still do to float just a bit above ground… happy go lucky!) Come to think of, how such microcosmic mini encounters (bugs, right? BUGs… could have been part of the equation… but then again, I am happy and most likely got lucky… ‘it could have been so much worse’, as my beloved mother in law Peggy would always say - and there is hard-earned truth to it!

But let's get back to a bummed knee and the genesis of a full-body experience of its own kind.

Note (13): Maté, Gabor The Myth of Normal: Trauma, Illness, & Healing in a Toxic Culture, Avery - Penguin Random House, NY, 2022

Note (14):  https://www.cdc.gov/genomics-and-health/epigenetics/index.html

“Epigenetics refers to the way your behaviors and environment can cause changes that affect the way your genes work, […] and can turn genes ‘on’ or ‘off’.  Your epigenetic change as you age, both as part of normal development and aging and because of exposure to environmental factors that happen over the course of your life.  Epigenetic changes can affect your health in different ways.”  More detailed information can be found on the CDC link above.

Note (15):  https://www.psychiatry.org/patients-families/somatic-symptom-disorder

According to the American Psychiatric Association: “Somatic symptom disorder is diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning. The individual has excessive thoughts, feelings and behaviors relating to the physical symptoms. The physical symptoms may or may not be associated with a diagnosed medical condition, but the person is experiencing symptoms and believes they are sick (that is, not faking the illness).

A person is not diagnosed with somatic symptom disorder solely because a medical cause can’t be identified for a physical symptom. The emphasis is on the extent to which the thoughts, feelings and behaviors related to the illness are excessive or out of proportion.

4 - Discomfort Prevailing: Pain Recognition, Management,

and.... pardon my upsetness: What the Heck?

It was most likely a busy morning, struggling two jobs outside of school, which along with the professorial assistant status, and the actual studying in my graduate classes, was quite a tall order.  And don’t get me wrong, somehow I lived too, had friends, parties, enjoyed life.  For granted, little sleep was necessary at that time, I think.  

While waitressing was slowly coming to an end as I had been offered a student full-time position, that racing around during night times was soon to be part of my personal history. But full-time meant there was no more time left nor really the need for earning money on the side.  However, it did not necessarily meant it made ends meet.  So, the receptionist post I kept and that meant five times a week for 3 - 6 hours to ride up the hill and be in charge of the elder care facility’s patrons’ coming and going.  I truly seem to not have needed much sleep back then - looking back, I wonder how that was possible (me and my cats have snooze competitions nowadays).  

I had an active academic life, thriving social existence, and created works of art and writing, while every other day riding 8 miles to either a retirement home for work or to hit the gym. In hindsight it is always amazing to me how I was able to do so much, achieve so much.  I had no other driving force than my own intrinsic motivation.  I wanted to teach, ideally at college level because I found that atmosphere stimulating and exciting. As in the movie The Mummy (1999) the character Evie Carnahan (Rachel Weisz) enthusiastically echoed in the talkative and somewhat inebriated night, “I am proud…. I am a librarian!” That’s how I felt to be an academic, proud, enthused, ready to conquer and better the world (with literary and artistic endeavors).  I had come so far, and mostly by myself, with the loving support of several family members and dear friends.  But never really with the expectation of some sort of return.  Sure all of them hoped I would succeed, but they did not make it a contingency - I grew up carefree that way. I had the energy and the drive, and for a while now, I had not been clouded by doubts, whether emotional ones or existential ones, or otherwise. I was thriving.  Don’t get me wrong, I made plenty of mistakes, one that got me nearly fired the after the first day on my full-time job… I had a gracious, kind guardian angel that day, who to this day is one of my dearest friends.  She saw something in me and rolled with it.  I hope, I did not disappoint - though she did not put any expectation on me other than, ‘don’t do this again!’.  (I did not properly proofread… on invitation cards… the address was ever so slightly wrong… for a big, BIG event…).  So, once I survived that fire, I was differently on fire - I was on top of things.

But that was being jeopardized with that morning that I awoke to a slightly throbbing pain in my knee.  Naturally, I didn’t heed it much, (I am on top of things) just as the days came and went and the throbbing persisted and at times turned into slightly agonizing bouts, I wondered,  

“Something must be wrong with my knee!!!”

Eventually my knee did swell and I consulted orthopedic specialists who hummed and hoed and murmured ‘inflammation’, slapping some stinky poultice on my knee and wrapped it up for six weeks, with the fear of God put into me, to not take off the wrap.  Oh how delightful, as the days wore on the stinky stuff stank more pungently, becoming nauseatingly rotten in fragrance to me, and I felt like, well awful.  But I stuck it through and wore the darned thing. As I knew it, I had a serious inflammation and my doctor, who obviously had harkened back from the time of King Arthur’s with Merlin’s witches poultice in his medicinal pouch - knew best. People around me started avoiding my nearness - so bad! 

I was hobbling up and down the castle building (yes, our department was housed in a castle - no, not the one in England that supposedly was King Arthurs…, but castle nevertheless, with no modern infrastructure.  Great; that meant no elevators which translated into even less so great: third floor on crutches with an aroma from the middle ages… dark middle ages, wafting about me. Definitely not great at all. Colleagues and friends sympathized and teased - at a respectful distance I may add  - and for sure hoped, it was over soon.  For all our sakes. So, six weeks into it I came back to he doctor’s office where the gentleman hummed and hoed again, questioned my dutifulness of wearing the wrap.  I looked at the wrinkled mess of skin and the atrophied muscle definition of my leg, and found a bit of sass in me, “Really?”.

There was an improvement as there was no more swelling, shriveledness maybe, but not swollen anymore. That said, the experience of discomfort in that knee of mine, however, seemed to be not better. The pain was still there. As it was explained to me, the thought was that ‘it’ will take a while before ‘it’ wears off.  We didn’t even want to use the term pain. When I inquired how that inflammation may have come about in the first place, they were clueless as I had neither twisted or over-bent the knee.  No accidents and nothing out of the ordinary.  It clearly was swollen so something was going on inside, but X-rays did not show anything of explanatory nature, and I was way too young to have arthritis or the like, anyway (which would have shown).  So the result was, I was sent home with some encouraging words, like ‘Good Luck!’, and other ointment and some good recommendations like chilling the knee and resting and within some undefined weeks it would get better again. The doctor and his assistant looked mightily relieved as I did not press the issue, because they simply didn’t know and didn’t venture to hit the books and figure it out.  So here I was, oh so wonderful, yes… unspecified duration of recuperation with no real diagnosis. Yougotta love it.

So far, so good, right? My right knee did gradually ease up with its throbbing, pulsating, pain, but then my left one started aching.  Good grief, what now??? I watched it for a while.  But no swelling appeared, just pain. Going back to the doctors (now two were attending me) was not helpful either.  They were mildly confused about my return, even probed whether I was coming to get a leave of absence from work.  I felt insulted but doctors back then were gods, so you did bite your tongue.  With a bit of insistence they put me through the gamut of tests and exams, the first of many to come.  First alignment studies; maybe my back is off.  Oh, you have holes in your spine - the next X-ray revealed; Oh, you had a hip stretcher as a baby because your hips were to narrow; Oh, the one may have precipitated the other…  Always with the tone, I should have told them or known about it… Recommendations and comments ranged from cutting my leg bones and put them back together again, with a 3 year rehab period, to ‘you are a woman, after all, and maybe you are just sensitive’.

Yep, first time I heard it I was stunned… funny thing is, each time I heard it, it always took me by surprise - Yes, you figured it out… it was to happen a few times… pain and women are just two sides of a coin… (baloney!)

“Ah!”  Weeks of prodding and probing and no advances or clues.  I got more ointments as I wasn’t to keen of getting my legs sawn up.  Though I detected a notch of disappointment in the Mr. Doctors.  They’d love to do surgery, necessary or not.  To make a case they added,

“But remember, you need to do this in the next 10 years or so” … no I didn’t and nearly 30 years later, I haven’t!  And guess what, nowadays everybody looks at me aghast when I tell the story (even the physicians … I try to be less sarcastic and add, ‘those were the times’

… I told you, it must have been the dark middle ages…. sigh.  Glad they did not suggest trephination to scare the evil spirits out of me.

I continued to hobble, first right leg, then the left, and a year into this first experience, the pain subsided.  Sometimes an echo but overall manageable, ignorable, and I figured, ok?

The following year, around the same time my shoulder started throbbing.  I wondered first, what this might be and then realized, whatever it is, while not spreading, it it cruising through my body, from place to place. My first inkling of something other was up.  I was trying to see the blessing in it, though.  

“It’s not multiplying, just moving about!”  I’m the kinda girl who tries to find the silver lining, no matter what.  But at the same time I wish it wasn’t coming at all. 

1997 was the year it started and ever since, more or less, it comes and goes and moves about.  Sometimes with a vengeance that prevents me from sleeping or doing anything.  And as I wasn’t quite sure what this weirdly behaving pain patter was, I was still believing there was something broken, infected, inflamed, torn, corrupted etc..  I went into full somatoform thinking, becoming at times - not always - obsessed with my body being not healthy, something wrong with my physical being.  And it became troubling to my wellbeing.  So at times, because of it, I’d lay low.  I didn’t want to aggravate whatever was broking.  So, laying low, not doing much physical activity, was my first go-to.  Alas, laying low truly helped me to experience the full amount of pain that my body was producing and it was debilitating at times and usually forced me wail and whimper.  But at the same time, when circumstances prevented me from taking resting moments I was actually doing better.  But I did not make the connections that quickly.  For example, a conference I ran for our department, that meant high intensity of moving about, being active, jumping and doing… the pain subsided.  As I said, I didn’t make the connection.  Traveling all summer of 1998 and 1999 in the US from hiking to water polo to rafting and walking for miles and miles through city scapes or the Library of Congress, the pain subsided.   It felt like coming and going and initially I did not see how the one influenced the other.  What I noticed though, was a gradual increase of discomfort over the years when bouts took hold of me, and in the mid/later 2000s I finally had my first severe break down.  At that time I had moved and established myself permanently to the US and worked part-time, mostly at a desk, with some teaching gigs, and spent quality time making house.  My hubby and I had just gotten married after a 5-year stable and happy boyfriend/girlfriend relationship - the kitchen remodel clearly indicated we were made for each other (you make it through a remodel as couple, you are safe!). Depending on the year, he was the dean or director or associate dean at our department and provided for house and home and happiness in my life.  I kept busy, because I cannot help it, but had a bit more leisure time on my side. The perfect  moment for evil gremlins to make themselves known in my body.  There were bouts on and off but this time the pain creeped into my body more and more and suddenly I faced a daunting truth, I was in pain and I seemed to be unable to move, for weeks. The thought petrified - I entered my own tautological nightmare.  Naturally my caring husband recommended to see the doctor, but I refused initially.  Only when I stood at the whiteboard trying to write important parts of my lessons and my fingers hurt so much that I couldn’t hold the whiteboard marker, did I resign to seeking specialist help.  I was pretty convinced they couldn’t do anything, adding a touch of self-fulfilling prophecy to the mix.  But I went.  I went to my regular physician, a really nice person but maybe not the most apt when it comes to mystery diseases and women.  Don’t get me wrong, he was trying to be helpful and kind, and sent me through my second gauntlet of tests, including Rheumatoid Factors, Asthma (which we established as something I have), X-rays galore, PT, for the finger and because they can, and other tests… but nothing came up with anything definitive - minuscule variations, marginal, nothing indicative - I am surely faking it, right?

The finger hurt, as did the rest of the body, but the Rheumatoid specialist had zoomed in on the finger and indicated there might be a ‘tad bit of arthritis happening, the age, and you are a woman. Woman tend to be susceptible to pains and aches, but they amount to not much and come from nothing’.  The capper came when he added, ‘Maybe it’s all in your head, thought about that?’  

Not only did I have not a diagnosis, but I felt humiliated. I steamed over this for a long, long time, and did nothing about it, but was seriously steaming - looking back at it, not too helpful an action. As a budding psychologist in training ( I went back to school to take some introductory courses and contemplated my next possible degree ), I had become a disciple for the scientific method.  And the doctors were working within the framework of scientific facts and findings. Alas they could not find anything.  The made the concession of somethings is up, and it might be somatoform in nature, so off to the psych department with the girl…. sigh!

And they were not utterly wrong… just the way how they approached it, was wrong…    And my outside directed stink eye at the medical field or inside focused self-pity garnered nothing and as a matter of fact was promptly redirected. While at that moment I was furious, incensed, and ready to bite heads off, I had come from a country and generation where we treat doctors like gods.  That steaming activity did not do anything good for anybody, rather what I did, afterwards, was chewing my husband’s head off.  Rightly so, he was wondering what he had done wrong.  Projection is not a good method of conflict resolution but I did it anyway (that’s where the weird brain division comes in, the good part of you and the not so good one, the conniving side… Pain makes you less friendly at times - especially when you are not aware of it doing it to you.  Yet again, my self-absorbed health focus shifted suddenly when my husband was diagnosed with Non-Hodgkins cancer.  I went into nursing drive and caregiving seemed to keep my body on high alert(16) with my pain-threshold increased so that I barely hit the minimum internal stimulus to feel physical pain. The pain was then more focused on a more psychological level, dealing with the possibilities of this disease.  It was strange though, that this intensely stressful time, emotional time, did not act like other stress situations.  My whole being went into action mode, survival focus and that eliminated any other distracting stimuli.  I plough through with one single motif, to heal my husband.

Note (16): GAS - General Adaptation System, a concept about stress and how stress functions in a human body, with an alarm phase - stress situation also fight or flight gauge, a resistance phase - stress impacts the individual/individual handles the stress; and exhaustion phase - when all all resources are depleted and weaken the individual.

After steaming for a long time and then nursing I needed a fresh start.  Everybody declared that the caregiver needs a break because caring takes a toll on the caregiver.  But I didn’t feel it, I needed some new outlet. I had still energies from my resistance (to deplete), so I decided to pick up my psychology training a bit more to train for family art therapist, and took a few more classes at college, for good measure (mostly art). I had studied psychology first at high school and then during my initial few years at college off and on, not seriously, just courses on the side - because that was something I did - and now, around 2008 I decided I needed a serious upgrade. Maybe even get a degree in it.  So, here I revisited neural networks, body-mind connections, and nature-nurture debates. I applied to and was accepted into a graduate program.  At the same time picked up some more classes to teach and so forth.  For psychology, much had advanced and to this day changes/advances by strides. I realized that my two specialists from a couple of years earlier may not have been so far off.  Maybe less the bias of ‘woman’ and ‘crazy’, but more of how things are processed in the human biological entity.  But it did not yet click, I have to admit.  My brain was a bit dense or doubtful or simply indifferent when the pulsating sensation was on the lower end of the experience spectrum.  But by the end of 2009 I hit rock-bottom again.  We had just returned from a semester in Germany and my immune system had just caved which resulted in pneumonia.  While breathing was a bit tough for months, and I was in and out other pains, the pain level started intensifying again. All this was not enough, as I didn’t move at all, so that I had gained weight and I was getting more and more depressed about all that was I seemed to be falling apart. I wanted to shut down.  I did shut down.  I should add, the exuberance of the two years prior had caught up with me and when looking back,  I realize, I had endured necessary stress and added stress for non stop and it had caught up with me, the caregiving fatigue had kicked in.  

The brilliant very logical conclusion of seeking out a new physician - made by my husband - met with scorn initially because, ‘they don’t know what it is anyway’, ‘and I don’t want to do more tests’, nor ‘do I want to hear about it all being in my head’!  But steady encouragement made me see his wisdom, and I was to weak to resist for long anyway; and we researched a medical professional who was versed in pain disorders and who was a woman. While gender or any type of defining criteria mattered to me in the past, this time it was important to me. Sorry guys, but I didn’t want to endure another condescending comment by a male professional. If so, I needed to hear it from a woman, if at all! (17)

Dr Sorotzkin  was a god-sent as she was kind and curious, and an exceptional good listener with a whole slew of follow up questions.  She also inquired what my first goal was, and I had to admit, at that time less the cause more the comfort to move again, to be able to be my sprite self.  A slew (yet again) of tests, mostly blood tests, and reviews of previous X-rays and the introduction to fibromyalgia.  A guess, at that point but she suggested the following process of elimination due to the fact that most tests came back ‘near’ normal.  All was just about good, ‘just about’. But what indeed was off, was hard to determine, except, that something was definitely off.  Two doctors in my life made that observation with all that they collected and each had become instrumental to make good changes.  Neither of them could truly identify the cause - because it is not simple, as we remember from above,

Because experts don’t know the exact cause, there’s no known way to prevent it.

And by extension, can not provide a cure as it was difficult to diagnose with so little substantial evidence, but they helped me find strategies to mitigate and manage my days in meaningful ways.  

Again the process was that of elimination.  The diagnosis back then was fairly new, en vogue I might add, and warranted no straight forward analysis.  New to the medical field as something to be recognized.  Before that the prevailing wisdom was indeed, “It’s because you are a women!”.  It was not apparent the men actually can experience fibromyalgia type of disorders too, but due to their less susceptible pain threshold it manifested itself most likely differently.  Again, we knew nothing of it in the early/mid 2000s.

Note (17): Mind you, I had not yet read the history on male-dominated medical research, which means in the past clinical trials or preclinical studies focused mostly on men, which until recently was the prevailing method, not allowing for the physical differences between gender or races, e.g.: it was discovered that what is good or bad for a caucasian middle aged male does not necessarily apply to a woman, an Asian or African person etc., or in extreme cases at all to any other person.  Individual differences are very important factor in avoiding misdiagnoses

For the moment then, we could see whether pain could be alleviated and movement gradually restored, and with it, mood brought into equilibrium - back to my 1990s amazingness (feeling).  To this end she inquired again, whether I was willing to work on that second part.  I wholehearted said yes, and she simply put me back on the treadmill - literally!  So part one was to get back into my exercise routines - I had given up most except of walking (in L.A. - I know, L.A. of all places, but I did - I am German after all, we walk!).  So, I hit the LMU gym, found my first meaningful trainer, Jeff the Jedi Master of the Gym, who worked hard with me to get me to a place of comfort. He was intuitive and quite knowledgeable about managing his clientele with odd disorders.  I was so, so, so grateful and blessed!

Jeff the Jedi Training Master with me in 2012

The working through pain wasn’t easy at the beginning, but part two was a medication.  I abhor medication but she promised it was temporarily, to either see, whether it will make a difference or not, and if so, indicating that it indeed might be fibromyalgia.  She explained the medication to me, a once-a-day pill, low dosage Selective Serotonin Reuptake Inhibitor that would allow serotonin to flood my body more prominently.  It came with a couple of risks but if I was using it for the time being, she would monitor my progress and make sure I was in a good place.  She cautioned that the effect may only show after five or six weeks, but that it was worth while the try.  So for a year I popped the pill and hit the treadmill, or rather made Bootcamp my second home (high intensity circuit training and one-on-one sessions with our Jedi trainer.). About six months into I was able to move better and with the mobility the medication had an increased chance to act on my receptors flooding me with serotonin, thus preventing the pain to manifest so strongly.  Six months later I was pretty normal, and pretty fit again. Thanks to Jeff and through my sympathetic Dr. Sorotzkin, who did sincerely care and persisted in not giving up, I started to understand the complexity of my body’s mechanisms!  I stayed with my trainer until our move to Oregon in 2014.  I stayed with Sevella, the medication, for about 1 ½ years.  For about five years I was doing mostly well, not always pain free, but I was able to manage, even or especially after I stopped taking Sevella.  Unfortunately, my doctor had to switch insurance systems and my unwavering medical support was not at my side anymore.  Subsequent physicians during the ensuing five years were unsatisfactorily, as they weren’t really listening, and trying to push meds again instead of nurturing and building up my own resilience. And the ‘in the head thingy’ again, was being mentioned - and that did not bode well for a lasting doctor-client relationship - I wasn’t ready yet. I like context, not just a broadly applied psychological stigma. 

Yet again, thanks to the interlude with my first real intuitive and understanding doctor, I had been trained and more so, I had paid attentions to what had been explained to me until then and stuck with routines and self-preservation, and a good dose of optimism.  I continued my exercise regimen with the ever committed support of my hubby and Jedi Jeff, and had developed perseverance mantra - even when the going got tough I hummed, “the more you move the less your body has time to misfire”.  I hummed a truth, but arguably, I was not yet fully understanding.

Further Chapters are in the making.

Please continue wth the Blog 'Neural Strife #2'