This is a personal account of my recovery from the complex and bewildering territory that is Fibromyalgia, including all the many epiphanies and quantum leaps along the way, to the point where I came to see it as the very best thing that had ever happened to me. Looking back across its landscape, I see how this decade has been spent slowly but surely regathering all of the scattered parts of myself and putting them back together in such a way that I now find I am much more than the sum of my parts, for which I am infinitely grateful.
Originally published in April 2014 on my other website Scattering the Light and now updated a year later, it is by far the longest thing I ever published but then it includes everything that I feel may be important or helpful to those on a similar path. If that is you then I suggest that you either read it slowly or just dip into it, scrolling through looking for the tags and headings that feel most relevant, even go straight to the resources in the Appendix; basically, do it however it feels right to you but don’t be put off by its size as there is a lot of information here. I offer it all, as comprehensively as possible, in the hope that some or all of it shines a light on the way forwards towards recovery whilst making you feel better about where you already are.
Telling this story is the foundation for everything that ‘Health Reunited’ is all about (which is explained more fully in the ‘About’ section of this blog); a starting point and a foundation for amazing health.
Fibromyalgia – the fragmented self
If healing is a return to wholeness, then loss of good health is the ultimate fragmentation of the self; a state, made manifest, of something much deeper occurring on the inside.
Ten years ago, my health crashed in the most spectacular way, but I have since come to realise that this was, by no means, the start of the “event”, only the climax; I had been a very long time breaking down into parts so that (I now realise) I could experience finding all the parts and putting myself back together again – recovering.
Looking back, I see all the signs of a health pattern that was straining apart from mid-teens onwards; labelled the sickly by family members (a definition that I internalised), I struggled with mystery aches and pains as soon as I hit puberty and, by my early twenties, was noticing how rundown I felt whenever the pressure (or the good times) mounted up. A run of colds and a glandular fever type illness followed an accident where I was knocked off my bike damaging the spongy material between two vertebrae, from which point long-running, niggling backache joined the club.
From my mid-twenties, following a significant emotional trauma that (at the time) I didn’t connect with any of my health issues, then the reasonably sudden loss of my mother to cancer, there were ever more mystery ailments mounting until I never really felt well. These included hormones and energy levels that see-sawed, perpetually alternating candida overload and cystitis, for which the doctors doled out endless antibiotics, frightening episodes of numbness or pins and needles in my arms or feet and mystery skin irritations. The problem with my back only became worse, having migrated upwards to the scapula area, neck and shoulders and exacerbated by all the computer work I was doing running my own business.
After my daughter was born, and certainly not helped by the lions-share of lifting and carrying that I was doing in a marriage that had turned miserable and unsupportive, this pain became chronic and I started trying various therapies – physiotherapy, chiropractic and osteopathic treatments and acupuncture – as needed, or when I could afford them. In the autumn of 2003, the year I was going through my long-running divorce battle, which was a horrendously stressful time, I woke one unforgettable morning locked-up in such acute pain radiating from beneath my right shoulder blade into my neck and head that I could hardly move and I was forced to begin regular physiotherapy sessions. Whilst these brought some temporary relief, my therapist was left scratching his head at lack of long-term progress almost a year later, which coincided with the finalisation of my divorce and the beginning of a new office job.
During all the years of working from home or freelance for various businesses, I had managed to flex work commitments around my variable health patterns – which hid them somewhat, even from me – but things were about to change. Desperately in need of a predictable income to pay for my mortgage as a newly divorced single-parent, I took a full-time job in a solicitors firm; a job that went completely against my physio’s advice since it involved a long commute by car then constantly sitting at a workstation with a reduced lunch break to enable me to leave half an hour early to collect my daughter. The job was target-based and pressured; I was watched and noted for any time taken away from my desk and leaving my workstation only put additional pressure on work colleagues forced to take my calls so the tendency was to hardly ever get up from my chair. The journeys to and from work were fraught with traffic congestion and the anxiety of being late for work or to collect my daughter. From the minute I got into the car until the minute I led my five year-old daughter back into the house at 6.30 each night, I was sitting down and under stress.
In November 2004, something happened that turned out to be the match to the blue touchpaper of full-blown Fibromyalgia; only, I first came to realise this many years later. As the first winter in this job approached, and knowing I could ill-afford to take time off, I accepted the offer of a flu vaccination at work. Almost immediately, I fell ill which with “proper” flu; the first of my life and the kind where you can’t even get out of bed. From then onwards, it was as though I could never quite shake the feeling of flueyness off; I always felt achy or under-par and unexplained, chronic exhaustion would roll in on waves so that I would often find myself sitting glaze-eyed at my desk, trying to muster the stamina to pick up yet another ringing phone, feeling too vague to think what I was meant to do next. I was good at my job, exceeded my targets and had gone into it guns blazing but, suddenly, I was having to work twice as hard to keep this going; my plates were no longer spinning with ease and all enjoyment of it drained away, replaced by a terrifying feeling of overwhelm, not helped by how stressful things had become at home where even having lodgers didn’t ensure that I was able to pay my bills or keep on top of mounting debt.
By the middle of the next summer I was really noticing it, given the seasonal incongruity of feeling so awful in spite of the sunshine; and yet I continued to put it all down to life stresses at work and at home and so tried to soldier on, ignoring how lousy I felt. Responsible for over 200 clients, this was not a job where I could take my eye off the ball for even a moment. I was also taking freelance work home that involved interviewing witnesses in serious injury cases (having gruelling conversations with witnesses and victims involved in horrific road accidents involving injuries or fatalities, then writing meticulous legal reports). This was on top of parenting a very young child who needed my attention, so I was getting almost no “down-time” before I went back to the office again. My sleep had been poor since the beginning of my divorce and I was now, routinely, waking at 4 am with my head full of worries and fears. There were days when I simply broke down and cried, slumped over my steering wheel, before starting the long journey home and, in hindsight, it’s so easy to see how I attributed all of my bizarre exhaustion and “ill” feelings to circumstantial stress.
Yet there was a very distinct point that autumn, when I was off work for the second or third time in a row, that it really hit me, in a wave of gut-churning fear, that something really didn’t feel right with my health. I was losing my grip on my ability to keep going and I was deeply afraid of what was happening to my body. This was much more than just a run of colds; my whole system felt like it was buckling. Two more illnesses, including gastric flu over Christmas, wiped me out for the end of 2005. The big breakdown had begun.
What followed were several months of witnessing my health collapse, inch by painful inch. My back pain was so severe now that I was using a TENs machine at my desk and taking NSAIDs all the time, gulped down with the coffee that keep me going. After my weekly acupuncture session on Thursday evenings, I would frequently break down in floods of tears and such emotional overwhelm that I would feel as like I had a hangover the next day at work, followed by the inevitable crash into exhaustion over the weekend, only to have to start the weekly cycle over again on Monday.
I began experiencing bouts of sudden hypoglycaemia where my energy would crash, and the blood drain out of my head, so abruptly that the floor would almost come up to meet me and my face would go numb. This often happened on one of my rare trips to the water machine when the whole immense open-plan office I worked in would start spinning and distorting so much that I would have to steady myself on the furniture and would struggle to make it back to my desk without falling. I also had bouts of profound heart arrhythmia that would feel like my heart was being bounced around on a piece of elastic. Yet tests carried out by my doctor, for this and a myriad other things, came back negative and my department head (forever quizzing me for some sort of concrete evidence that there was anything genuinely wrong with me) was increasingly eyeing me with a look that suggested she thought I was losing my mental grip. Some of these episodes literally felt like I was going to die; as though my world was caving in and I couldn’t breathe and it was only much later that I came to realise that these were panic attacks, which could come from nowhere or from a mildly stressful thought passing through.
Sleep deprivation was only adding to this picture, a pattern of waking early and lying there locked in insomnia several hours before it was time to get up for work causing a rolling trend of near-exhaustion to snowball. As I lay there in the dark for night after endless night, I noticed how profoundly aware I had become of my body’s functioning; how fluids seemed to move through my body with the stop-start consistency of lumpy gravy, how electric tingling and weird electrical stabs and twitches could be felt in arms and legs, how my heartbeat seemed to take over my whole body like an ominous drum-beat and how it seemed to skip occasionally in discordant rhythms, how tinnitus in my ears was so relentlessly shrill that it sounded like a car alarm going off inside.
The life-long Reynard’s phenomenon that is a family trait became so triggered that all my fingers could turn blue and numb just from holding the steering wheel on a warm summer’s day or when I rested my hands on my stomach in bed. I rose each morning with horrendous pins-and-needle sensations in my arms and legs and would have to take my time about placing painfully burning soles of feet onto the floor before overcoming profound muscle stiffness to make it to the bathroom. Painful neuropathy – a sensation like a sharp dagger stabbing into toes and base of feet – began to occur so unexpectedly that I would sometimes buckle with the surprise pain of it and, at other times, a suddenly weak leg muscle would fail to support my weight or randomly twitching nerves would start to occur in my legs, forearms or eyelids. The slightest drop in temperature caused muscles turn to rock and pain to exacerbate so much that I became hugely responsive and even fearful of certain weather conditions, particularly cold, dampness, extremes of temperature or changes in air pressure (like those that precede a storm or a new weather front).
On top of all this, my already sensitive stomach developed into a concerted pattern of Irritable Bowel Syndrome so that I faced the misery of swinging from one extreme to the other and became sensitive to food triggers, turning me into a cautious eater who preferred to dine at home where I could exercise control over my food. I also developed an overactive bladder that woke me up at night and forced me to plan what I did, where I went, how I got there. The overall effect was of life suddenly feeling all too convoluted to cope with on top of the pressures of commuting, high-pressure job and being a single parent and so I started to withdraw from anything that wasn’t part of a safe and predictable routine. Over the years, repeat bladder issues have developed into regular episodes of interstitial cystitis; which remains one of the most chronic conditions of them all and which is related to Myfascial Pain Syndrome (more on that later)..
One of the most oddly distressing symptoms was an unquenchable thirst; it didn’t seem to matter how much water I drank, my mouth felt permanently like a dessert and my body had that dry-celled, tender, dehydrated sensation that I associated with hangovers or taking too many products containing phenyleprine (an ingredient contained in cold remedies which, I learned, I had to utterly avoid as it made me feel very much worse). In fact, my whole body felt toxic at some level, like I had been poisoned and this became a description I found myself using most often to try and describe how I felt to bewildered doctors, colleagues and friends. Everything felt wrong somehow.
A final aggravation was that multiple sensitivities started to arise – first in relation to food followed by products such as soap, shampoo, even the smell of perfumes; then to chemicals and the “hard” minerals and other additives in tap water; to EMFs when in close proximity to cordless phones, Wi-Fi equipment, pylons or at times of full moon; even to the mere smell of chlorine watching my daughter swim. The one time I went swimming in a public pool during this era resulted in me being virtually bedridden for days, with the most excruciating migraine headaches and all-over muscle pain that made me almost too weak to stand. These symptoms became my standard body-responses to anything that my system received as toxic, which could include a myriad ordinary environmental factors that included new carpet, synthetic clothes, paint fumes, cigarette smoke or aerosol products. At times, the irritated skin on my back or chest felt like it had been scratched raw and massaged with chilli, all without any obvious provocation, and I developed some excruciatingly persistent patches of eczema that failed to respond to any of the usual lotions. For a number of months, I experienced regular bouts of intense burning on my thighs that felt like chilblains. Perpetually itchy scalp was also an issue – later, one I came to associate with candida.
The space to explore
I was so fortunate at that time to be with a new partner (now my husband) who was nothing but supportive. With the simple intention of affording me some time and space to get to the bottom of what was happening to me, he encouraged me to hand in my notice and so I set about devising a way that I could return to self-employment, coming up with the long-held ambition of owning an art and interiors shop. My new business was almost about to launch when the plans fell through due to a logistical glitch with the premises I was renting but, in hindsight, that in itself was a gift as my health was only going to get worse before it got better. The important thing was that it had given me the excuse to leave my stressful job, which was the first of many gifts that came to me out of these apparently dire circumstances; the first breakthrough in the process of stock-taking my life. Stepping away from that work environment allowed me to recognise that a high-pressure office was absolutely not the place for me, even if I was very good at my job (the excuse I always used to justify it); it was completely out of alignment with my personality type and creative, independent-minded skill-set, my need to move around, to be flexible and varied and to be outside in nature. In its own way, that job catalysed the necessary breakdown of my life, it pushed me over the edge in a way that I now regard as having been a blessing in disguise because out of that breakdown came the rebirth of my life.
For the time being, my sole aim was to recover my health and the peculiar thing was that, even after stopping work (and having attributed so much of my crashing health to work-related stress) I felt no better and the symptoms kept piling on. The reversal of my plans to open a shop was the second gift in this sequence as it gave me the time and the space to focus on recovery. I won’t pretend that I am not extremely fortunate to have been in a position to do this with the financial support of another (now) behind me after years of struggling all alone but I also want to stress how useful it was to be able to take this opportunity to pull back from being the bread-winner in order to focus on myself as my own priority at this point. I would strongly urge anyone with a chronic health issue who is able to do this, even at the expense of trimming their lifestyle back to fit the reduced income, to take such an opportunity with both hands as it was crucial to my recovery process to be able to drop everything and allow life to take care of me, not the other way round, for the next stage of the journey. The whole new way that I came to regard such issues as ‘survival’, ‘necessity’, ‘worth’, ‘priority’ and ‘abundance’ became part of the reinvention of the me that birthed out of my illness and would not have been possible if I had still been tied to my old belief-system about all these things.
So with time on my hands, and between hugely variable health conditions that, on some days, had me just lying there in exhaustion and pain, I put every effort I could muster into researching “what was wrong with me” and that’s when I first hit upon the label “Fibromyalgia” which seemed to tick every single box on my symptom list. Along with ME and Chronic Fatigue Syndrome, I’d (vaguely) heard of this before but, if I’m honest, had regarded them all with the kind of disdain that is conveyed by the label “yuppie flu”.
In some very profound way, I remember it feeling like a relief that I was (finally) able to name this thing instead of it feeling like a masked assailant coming after me in a dark room, never knowing when or how it would strike next. Fibromyalgia is widely deemed to be “incurable” (not a belief I subscribe to at all!) but it has never killed anybody and the “not knowing” what was happening to me had only enhanced this sense of things spiralling out of control. A name enabled me to calm my feelings of apprehension, to appropriately direct my research, to reach out to people that knew about its symptoms or who might offer real hope; in short to feel, ever so slightly less isolated and afraid of what was happening.
Because, by now, pain had become the very core of my experience; spreading out from the tender heat of the upper back region that felt like its control room, especially trapped right beneath my shoulder blades and reaching up into my neck into the back of my head, though its reach was so much broader than that. At its worse, there was hyper-sensitivity present in every cell of the body that brought with it an acute awareness of every extreme, from burning feet to super-sensitive teeth or a sore stomach lining (I was later to discover this phenomenon was to do with elevated levels of Substance P, a neurotransmitter that conveys messages of pain to the brain). This all-encompassing pain sent sciatic nerve pains down legs, made distinct tender points of areas in my thighs and forearms that felt permanently bruised and referred pain from one trigger point in the body to another (something I came to understand more fully later when I learned about Myofascial Pain Syndrome).
At times, I had finger, wrist and other joint pains that felt like rheumatoid arthritis (and I suspected carpel-tunnel syndrome more than once). My general muscle status often felt like I had the flu – just general heavy and achy. Sudden muscle tremors, rhythmic nerve twitches and other variations of peripheral neuropathy would come on randomly yet so intensely that it could be alarming, especially when it involved loss of sensation or shooting pain in the feet that felt like the onset of gout. When what I termed a “sugar-low” happened at the start of a flare-up, the whole lower part of my face could feel numb, my lips and nose turned to rubber like I had been to the dentist. These energy crashes could vary from the “grab a quick nap” variety to suddenly feeling like I’d been hit by a truck and had to just stop for a day or more. My teeth would suddenly mimic intense toothache, migrating from top to bottom jaw at will, and then just as suddenly subside. Perpetually sore ligaments running up my neck joined a painful “hoop” around my ear and triggered nerve pains behind my eyes and into my sinuses (following the path of the Trigeminal nerve); joining forces with the relentless tinnitus that was an almost continuous experience, becoming louder and intensely shrill when I was most triggered. In my jaw, my temporomandibular joint became stiff, tender and gravelly when opening and closing my mouth and trips to the dentist had to be handled with care and planned for when I was feeling the least challenged.
I became profoundly aware of a strange sensation of tenderness and pressure in my head that was like a constant low-grade toxic headache; noticing it most when having to concentrate, such as behind the wheel of my car. Sudden difficulty with night vision and the glare from car headlights made driving a further challenge and the supreme effort this now entailed caused me so much tension in my body that the drive to collect my daughter from school could floor me for the rest of the evening. Migraine-type headaches became frequent after exertion or other triggers, and light and noise sensitivity became the very signal that I was about to experience a full flare-up of other symptoms; flashing lights and blurred vision the indication that it had fully arrived. These were the times that I was forced to succumb to closing eyes and riding the storm of widespread pain.
That’s very much the pattern this condition took; one of “flaring up” so that one symptom after another became triggered and joined the party, which could then last anything from several hours to several days. When this happened, there were times when I felt I couldn’t cope at all; when I just faced the back of the sofa and lay there for hours, had to call for help picking up my daughter or walking the dog, became reclusive, withdrew into myself and felt lost. Yet, however miserable I felt, I learned (the hard way) that I needed to avoid crying as heightened emotions only set off all the symptoms at once and exacerbated all the pain!
The pattern was so bewilderingly variable that there were other times when I felt fine, went out doing things or striding out over hillsides with my dog and it could have almost been any ordinary day – and anyone who happened to meet me would have been completely unaware that there was anything wrong with me at all. On those days, even I began to doubt there was really anything wrong or to self-accuse myself of fabricating it all or of being a hypochondriac…but then another flare-up would come along and suddenly it was all very real again.
Most of my time was spent somewhere in the middle; in a state where it could go either way (which made forward planning near impossible) – and what I found was that, when I painted, the likelihood of it tipping into worst case scenario lessened considerably, so that’s what I did, as often as I could. Painting took me into a state of supreme objectivity that became a sort of meditation, I was able to float away from physical me into a broader sense of myself until that pain-free reminder of a flawless Higher Self (beyond the physical body and its pain) could come flooding into my body cells like a soothing balm. It was like touching base with my original blueprint, the ideal drawing board version of me before life had its way with my biology. I now know, this activity actually did drag me out of ‘over-thinking’, analytical and alert beta thought processing into the gentle theta brain waves of meditation but, in the beginning, I was only aware of feeling so much better. In that state of pull-back from the physical reality that had become like a millstone to my experience, I was able to sustain several hours sitting in creativity and that became the third big gift amidst the rubble of my tattered health – I taught myself to use oil paint and soon realised this was my vocation, my hearts-passion, the thing I wanted to do with my life.
Over time, this took off to the degree that I was able to exhibit my work and make it my prime occupation in a completely credible way, fitting it around my yo-yoing health, with the added benefit that it actually made me feel better for extremely sustained periods of time. Looking back, I see how finding my true passion, something I could immerse myself in, has been responsible for at least two-thirds of my recovery and (whether it is painting or absolutely anything else you love to do; as long as it brings out your creativity) I would encourage you to find your own version of this because it is the elixir of life to follow your passion!
Still, the research, the trial-and-error, the relentless trek in search of the holy grail of ‘recovery’ took up much of my time and it was slow journeying to start with. For all I had now labelled this “fibromyalgia”, this got me no nearer a cure and the culture surrounding this word seemed to be all about “mitigating symptoms” and “learning to cope” rather than getting anywhere. The internet was stuffed full of sufferers on chat forums yet most seemed to function around the model of swapping disheartening stories of “bad days” and offering each other “gentle hugs” and I wanted nothing to do with the underlying defeatism, the focus upon everything that was “going wrong” rather than looking for what was going right so I side-stepped them all. My basic instinct told me that what you focus on creates your reality and I would rather go it alone than focus on all the supposed negatives.
In the meantime, during 2008, a Bartholin’s cyst that had failed to respond to two doses of antibiotics caused me to near collapse with toxic shock before being rushed to hospital for emergency surgery. This turned out to be life-saving as it flagged up an advanced ectopic pregnancy, in my fallopian tube, that I had been completely unaware of (and which shouldn’t have been possible given I had an IUD). They went on to discover that I had a polycystic ovary while I was on the operating table and my recovery from these procedures, followed by months of swinging hormones, threw my recovery momentum into disarray for the best part of a year. Looking back, that whole era seems like all I was doing was keeping my head above water from early 2008 until autumn 2009, although my painting was steadily making headway.
Life under a big grey blanket
This is so significant to mention: one of the worst aspects of fibromyalgia – the trip wire within the stagnation that helps to keep you stuck there – is the brain fog; a sort of befuddled, forgetful, can’t-hold-two-thoughts-together state of mind that comes on during flares, lasting anything from a few moments to a few days or weeks and, in the early years, feeling like a ever-hovering state for many months. Without hesitation, I would say this came to represent the most nightmarish aspect of what was going on as (usually the sharp-witted, hyper-organised strategist of my own life) it seemed to steal away from me my very ability to feel rational or in control of my situation. It took away the very confidence I used to have that I could think my way out of any scrape because – for very large portions of the time – I felt like I was living in a grey blur!
Even worse, it made it so hard for me to communicate through speech or even written words, the use of which (by this 2011) had become my second-greatest passion as I had started blogging and yet, when a flare was underway, it was as though my ability to articulate myself was stolen away from me or I couldn’t trust what would come out of me. I withdrew from situations where conversation was likely and got to the point of having to ban myself from email communication at these times, for fear of regretting the kind of messages I would fire off in my fogginess. Once a big chatter on the phone, I completely stopped answering the telephone when it rang and it remains something I still avoid unless I am quite sure who is calling.
If there was a theme to all this, it was the overwhelming sense that I couldn’t trust myself when a flare was in progress…whether it was do with saying the “right” thing or knowing whether I had locked the house. It flagged up to me just how many of my old behaviours had been unconscious, that is, handled by my unconscious mind, carried-out automatically but not thought about at the surface. The gift in it was that it helped me to single out which actions were conscious and which weren’t; which was the beginning of recognizing which ones I wished to perpetuate and which ones I was ready to drop as “not mine” but, rather, learned from others. Also, in the deepest states of brain fog, I came to realise, I was not disengaged from intelligence…it was just a different kind of intelligence that felt more universal; cosmic, if you will. I might not be able to remember how old I was but it felt like I was “remembering” so much else of such grand significance beyond the trivia of daily life and it was during some of these times that I started to make the most quantum headway, feeling like I was gleaning an infinitely bigger picture of what life was all about. It was like my left-brain got out of my way so I could see so much more (I talk about this factor much more in a post where I review Jill Bolte Taylor’s incredible account of her stroke and all the insight that gave her – “My stroke of insight”).
I was pushed through some sort of chaos threshold, where it was as though life’s runaway train no longer had a driver (which was terrifying at first), to the point where the only option left was to just trust that it didn’t need one and that everything would be alright anyway because there were forces at work here that were expanded way beyond the train or the track it was running on. I was forced to drop the control-freakishness and to live in the moment, taking each one at a time, rather than dwelling on what had just happened or worrying about what might. At some level, it was like being taught how to let go so that I could get back to being me.
While I was in these states, they remained challenging in ways that fed my continued withdrawal, my stepping back from doing so much (to mitigate the extent and seriousness of things that could go wrong “out there” in a practical world). When confronted with even the most basic social situations, like the need to chat with other parents at school or when out shopping, I would sometimes find myself stuttering and stumbling to find words, unable to grasp even the most obvious ones or things I should know by heart like birthdays, pin numbers and post codes. I could find myself in tears and defeated over what socks to wear and would mislay things only to find them in bizarre places (like my phone in the freezer). I had barely turned forty but was already fearing the onset of Alzheimer’s because (I thought) what else could be making me so forgetful of what happened only this morning or barely moments ago?
The once very-much enjoyed pastime of wandering around shops for hours became my worse nightmare due to the sheer amount of being upright it involved, combined with something about the quality of the piped air full of all those chemical fumes from synthetic clothes and shop fittings plus the noise and bright lights which would aggravate headaches, blurred eyesight and muscle pain, not to mention dizzy spells and hypoglycaemia. All the joy went out of going anywhere that was too busy, noisy or full of excitable people and so I learned to avoid these places, including many of the restaurants and venues that I once really enjoyed.
I’ve always taken great care with my appearance and used to love “dressing up” but, from very early on, the sheer exhaustion and reclusive lifestyle made these habits extremely challenging to maintain – although I would still go to considerable, often wearying, lengths to look presentable if I was going somewhere that I would be seen, if only to try and catch my own tumbling self-esteem. Brittle nails, poor skin quality and thinning hair were all part of the territory in the early years (at one point, I was losing hair in handfuls) and, over time, the constant bewilderment at how the steadily improving diet that was starting to pay dividends in my health was still leaving pockets of unshiftable weight to remain around my torso gave way to the light-bulb realisation that this was my body’s own way of protecting me from toxins and the side-effects of free radicals that might otherwise harm vital organs. This led to the introduction of many more antioxidant sources into my diet and a complete overhaul of the vitamins and minerals that I was taking (more on these below and in the Appendix).
With variable ability to cope with normal day-to-day circumstance came waves of irritability and there were times when I felt almost irrationally bad-tempered with it all. Then my own self-criticism for being like this would make me feel I should hide myself away even more.
Another reality was that the Premenstrual Syndrome symptoms that had only ever been very mild and, thankfully, brief before became the main event of my month (lasting a number of days or even weeks), triggering most of the other symptoms on my list, followed by another day-long health crash that always coincided with the halfway point of my cycle. Breast tenderness became debilitating for up to two weeks each month – all part and parcel of the same terrible drainage and handling of toxins that I believed to be behind my cysts and the occasional lymphatic lumpiness under my arms. I also realised that I was likely displaying the symptoms of oestrogen dominance and that this was probably being exacerbated by outside sources of oestrogen via tap water, plastic bottles and food wrapping (there is plenty of information about this if you look for it); all of which I started to avoid. By teaching myself all about natural hormone therapy using creams (natural progesterone became a life-saver) and introducing phytoestrogens through the use of supplements (see Appendix) and diet, I gradually coerced things back under control, but it took a long, painstaking process of careful management and things could suddenly alter again without any apparent rhyme or reason, perhaps triggered by change in routine or a slight increase in stress. As I rapidly approach Perimenopause, the challenge of stabilizing hormones continues to keep me on my toes yet I am so grateful that my journey through Fibromyalgia has taught me all I now know about the natural approach to the ups and downs of this stage of my life.
Early on, I noticed how the winter months became particularly gruelling, the longer darker days only exacerbating the feeling that I was living life under a dark, heavy blanket and also, I came to realise, the lower quality of daylight had a profound effect on the proliferation of all my Fibromyalgia symptoms, as did the cold, damp weather. A SAD lamp and multiple full-spectrum light bulbs to mimic the daylight I was missing became staple fixtures in my living space (and completely transform the feeling of being indoors!) and I now appreciate how much the daily walks with my dog helped to minimise the effect lowered light-quality could have had on my health since I was getting outside, into maximum available daylight, for at least an hour every day. As my health has improved, the early intolerance of bright light and heat have backed off and I now find I can tolerate being outside in sunshine like I used to do before my health crashed, which is wonderful and so therapeutic. Some of my biggest health leaps of last year occurred around the time I was regularly meditating, or just relaxing, in a sunlounger in the garden (not at midday!) and my personal choice is to do this without sunscreen – plus I only use a natural aloe vera suncream when I do. Getting outside into sunlight also tops you up with that all-important vitamin D, essential for pain relief and bone support; on top of which I recommend a high-dose supplement all year round (see Appendix).
Gaining the (infinitely) bigger picture
A massive breakthrough was deciding that the many single-approach therapies I had tried to date, ranging from all the various types of body work to approaches such as acupuncture, hypnotherapy and Bowen Therapy, were getting me nowhere long term – all I was doing was managing my symptoms for brief periods then springing back to where I had been before. Each had their particular spin on what was wrong and what could be made better but it was a piecemeal process and the idea of an holistic approach kept flagging itself out to me, making me feel there must be a more integrated, whole-body approach to tackling the bigger picture of whatever was going on.
By the end of 2009, I had quite a bee in my bonnet to get on the road to permanent recovery and that’s when I tripped upon holistic therapist Lynda Money and embarked on a whole new chapter. If you are on a similar journey to mine, I heartily wish for you that you may come upon a gifted individual such as Lynda as her extraordinarily diverse skill-set made all of the difference and started my recovery along a whole new track.
The way that I found Lynda was via an internet search looking under the heading “Myofascial Pain Syndrome”, which was the new term I had come across to describe the kind of pain I was experiencing, with its various distinct trigger points of pain that I had become aware of around my body. I had read all the many resources on the subject by Devin J. Starlanyl, learning about the body’s myofascia and how this has its own memory, holding onto old emotions like distortions in the fascia until it becomes immoveable or distorted like a twisted corset over time, all of which can be worked upon by someone trained in myofascial relief therapy. If a rigid, inexplicably painful body with some bizarre pain-referrals (tooth pain related to my back issues are what flagged this up for me) sounds like you, I strongly suggest you read up about Myofascial Pain Syndrome as it is far more common than most people realise and is often a comorbidity with Fibromyagia.
Looking for this therapy in my locality, I came across Lynda and promptly booked myself a session yet what she came to offer me was so much more than that one approach. A whole bag of tools, from Reiki to Spinal Touch to Energy Psychology, Myofascial Release Therapy and more, came out to be played with over the course of the next year or so and, together – through tears and many breakthroughs and what felt like many profound releases of beyond-one-lifetime significance, shifting energetic debris that so often felt ancient and inherited, we made serious headway together. This was where I began to gain a multi-lifetime perspective, understanding how many of the blockages that I carried within my own physical body extended back through old wounds, fears and perceived limitations belonging not just to my ancestors (passed on through my DNA) but to humanity in general, women in particular, by virtue of the fact we are all connected, culturally, energetically and at Source.
Perhaps the greatest gift she gave me was to open me up to the spiritual perspective. Through the very direction that some of the explorations took in our sessions and the fact she introduced me to the books of Eckhart Tolle (who came ringing into my consciousness like a clear-sounding note amidst the raging noise of everything else going on), she opened a doorway that became the very portal at the back of the wardrobe, into a whole new expanded perspective that became the next gift of the journey of my life – my reunion with my Self, my Higher Self, my Divine Beloved (or whatever phrase most resonates).
A spiritual being on a physical adventure
After that, things became very much easier because I had my Self fully and openly “back on side” and taking me wherever I wanted to go next, via the direct route, rather than the convoluted one. Suddenly I understood how that was all my Self had ever been trying to do – that is, guide me back into reunion me with my own bigger perspective, one that was aligned with my own heart – only, when I doggedly refused to listen to the clues that were being dropped all around me, I had been necessarily subjected to the Self’s version of shouting, which was to send me messages of profound discomfort at every turn. I came to understand that our body is our best clue as to how on track (or not) we are and that it is only when we ignore its messages that we are taken the most difficult route to get to wherever we are heading. Through gut feelings, fizzing excitement, synchronistic clues, goosebumps and just “feeling inexplicably good” or at ease about one thing, or “feeling off” or dis-eased about another, this inner guidance system had been communicating with me all along – only now I was prepared to take note.
How bizarre it seems to me now; the way I overlooked this aspect of myself for so long! Empathic to a fault, highly instinctive, capable of feeling literally everything going on around me (too much, it often felt like!) and so hyper-sensitive…yet I had largely blocked this aspect of myself because to tune into it felt altogether too “woo-woo”, superstitious, unscientific, unreasoned or like some form of religion. Yet, looking back across my life, I realised all my most inspired decisions and profoundest insights had come to me via those moments when I felt inexplicably guided to take one route over another and had very little, if anything, to do with “logic”.
If I had to nail it in one sentence, it was the sudden realisation that I was a spiritual being enjoying a physical experience that made all the difference to me. “Enjoying” became the key word here because, I now came to understand, at some level, I was wanting all this to happen to me, even Fibromyalgia. At some level that I didn’t need to be minutely concerned with, it was serving me to go through this, was delivering my highest outcome, with only my best interests and most expanded evolution at heart. It was growing me into my best self and if it seemed to be taking me there by the toughest route, this was only because I wasn’t being attentive enough, I wasn’t getting the messages it was trying to deliver on the first try. All the endless repetition of symptoms came down to the fact I was still hitting the same stuck-points as before, across this lifetime and probably many others (all of which had taught me something valuable about myself) and, without the need for self-judgement, if some part of my health didn’t seem to be improving yet, I could now consider that it must still have some grander design for me up its sleeve and would resolve when it was ready or had delivered all its gifts. Suddenly, I was able to allow that there were positives to be found in some of the worst moments of my experience and, once I got this, these positives started to present themselves to me much more quickly, allowing me to move past the need for the delivery method to perpetuate. It felt like the beginning of a great, energetic clear-out of my field!
This newly unfolding level of awareness that was starting to alter my whole perspective of what was happening to me, and the very speed of my recovery, was jump-started even more after a session of Neuro Linguistic Programming with Dominic Knight in Harley Street in May 2011. The irony was that I approached NLP with the same detached scientific curiosity that has made it the approach of choice within corporate management training programs and yet what happened to me as a result of my session stands out to me now as such an esoteric and “woo-woo” kind of an experience that it almost defies logical explanation and I will never forget the impact it had on me, for as long as I live.
Yes, there is a scientific angle to what happened in my NLP session – Dominic helped me to dismantle certain attitudinal structures (self-sabotages) that had been rigid and locked in place all my life (probably held onto most tightly because, at some level, I believed they were protecting me) and, after they were removed, I was left with a complete void where they had been; possibly for the first time in my life. This void, like all true voids, harboured the potential for creation – a rebirth – and within minutes of the session ending, a great flowering took place. What felt like it was happening was that my solar plexus cracked open, like a big golden egg, and love came pouring out. I was sat on a grimy and crowded London tube train leaving Oxford Circus when I suddenly felt overcome with the most incredible outpouring of golden love-light that I had ever experienced, which was literally torrenting out of my heart like illuminated water from a vessel that could no longer contain it. As this happened, I had tears welling up in my eyes and yet I simply could not stop grinning at the other passengers, who probably thought I had a screw loose. I loved them all, I loved myself. I had discovered self -love and I was experiencing, first hand, what this felt like as the centre of all possibility, as the starting point that puts us at the hub of our own experience and radiates us up to a new level of experiencing what it feels like to be alive and connected to all things. I was having a “heightened experience” – the first of many – and had just made a giant quantum leap.
After that, I spent a memorable afternoon near floating around the galleries and streets of London and greeted my bemused family back home like someone returned from an epic journey because – quite obviously, to me – I had travelled much further than the forty miles I had covered and absolutely everything had changed. When a friend encountered me on my dog-walk, the next morning, she greeted me, from twenty paces distance, with “Wow, what happened to you?” as she could so clearly identify the change in me without knowing what it was, though she described it as seemingly like a radiant light had switched on in my face.
With a suggestion from Dominic that I took to like a duck to water, I started meditating (initially using Holosync audios, later on my own – making this a daily practice) and the improvements in my health started to chock-up on a daily basis because, whilst the intensity of the inner light that had “switched on” could vary in its intensity, it never again extinguished (nor has it since) and so my very vibration altered irreversibly. I also found that brain fog backed off so rapidly now that I became super-sharp thinking, super-motivated and more focussed on recovery than ever before. All the information gathering I had done to date suddenly clicked together, seemingly without effort, and I was on a roll. And all that negative inner dialogue – once so quick to find fault, to pounce on the set-backs, to feel defeatist – went terribly quiet after that; it appeared it had run out of things to say!
So grateful for everything
The very pattern of Fibromyalgia lends itself beautifully to developing an attitude of gratitude; the repeated lows and the crashes making the days when you feel great, or even just a little better than you did, enabling you to appreciate the inherent joy to be found in even the simplest of things. Like a zillion mini-deaths, the rebirths became more profound each time they happened and, as a sense of gaining traction and of noticing longer spells of recovery between the relapses came into my awareness, this all-pervading optimism and love of life grew stronger every time.
With renewed gratitude for everything, I started to wonder whether, at the higher level, I had even set up this entire health-crash for myself so that I could experience a living metaphor for all the inner limitations I had imposed upon myself to date; all the bad choices and compromises of my life (jobs I didn’t want to do, my first terrible marriage, giving up so easily on my passions and aspirations) taking form in the physical so I would be forced to learn how to overcome them by making better choices that were more aligned with my Self.
I was beginning to feel out the very presence of my sovereign-self at the centre of my own life-experience and to see how intention was far more powerful than all of the trappings of physical reality, however solid and seemingly impassable that reality may appear to be from the limited perspective of the three-dimensional human being, especially one trapped in a body that keeps on delivering pain. To survive this, I would have to think bigger than that, BE bigger than that – and that was what I was now prepared to do.
I found I was suddenly able to conceive of a plan for recovery that took me far beyond thinking and being so small or so limited; I was going to drive this thing now, not by aspiring to become something beyond myself, something aspirational, audaciously ambitious or out of my reach but by RETURNING to all that I already was; that big, perfect me that was beyond all the pain. Not only that but the way I was going to get there was to drop the control freak tendencies that made me want to be in charge of everything and to be guaranteed of certain outcomes in advance; this time, I was going to ask for BIG help and then surrender to the outcome, allowing that it would come in its own way, in its own time and that it would be just perfect.
That didn’t mean just sitting there doing nothing, hoping I would get well; but it meant taking whatever positive steps I could, being prepared to evolve and modify those steps in each moment whilst allowing that I didn’t have to have all the answers in one go and could trust that I would be delivered the highest possible outcome in ways that would, very likely, surprise me at every step.
On the road to recovery
What unfolded, that summer of 2011 after the NLP and the start of mediation, was a period of such fog-free clarity that I started to feel so much more optimistic and put together a whole recovery plan for myself, based initially on the work of Dr Jacob Teitelbaum, whose book “From Fatigued to Fantastic” I had just read. This involved cleansing my body and taking a whole range of supplements including a powdered vitamin compound made by his company, Enzymatic Therapy, called Energy Reivitalization System which is specifically devised as part of a recovery plan for chronic fatigue.
Another key supplement was MSM and my levels of Co-enzyme Q10 were raised significantly, along with other supplements aimed at restabilising thyroid and adrenal glands, all of which take a hammering as a result of long-term chronic illness (I recommend consulting Dr Teitelbaum’s book for the full low-down on all of this all of this is absolutely key to recovery from Fibromyalgia and Chronic Fatigue).
L Carnitine seemed to be a missing link suggested in lots of places and I found its use really helped to reduce muscle pain and return muscles to something like good functionality as well as making brain function feel sharper and helping hugely with Peripheral Neuropathy.
I learned all about yeast overload and was able to understand how this had been the opportunist side-effect of compromised health (and years of poor eating habits) that had, very likely, triggered many of my longest-standing symptoms and so I went on a candida-bashing programme, using supplements and certain food avoidance, to combat this until I stabilised.
The next key component in the mix was D-ribose, a natural sugar that directly feeds muscle at the cellular level, bypassing all the unwanted side-effects of refined sugar (especially inflammation and pain). The effect of using this – as either a white powder in drinks or on my breakfast cereal, or as a dissolvable tablet in an emergency – was nothing short of astounding. Not only did it make me feel more energised and allow swiftest recovery from sudden energy “crashes” but seemingly erasing that ever-hovering potential for the brain fog to descend in a way that represented a whole new lease of life. It also helped with the transition from a sweet-toothed diet to sugar elimination, over-riding any cravings that I occasionally had at that stage in a way that had none of the negative side-effects of sugar.
More than all that, Tietelbaum’s book enabled me to grasp, more fully than ever, all the ways in which my body was probably struggling to process all the nutrients I was throwing at it (a factor I hadn’t even considered before being Leaky Gut Syndrome, which meant many of my nutrients may not even be getting to where they were most needed) and so I began to gain a handle on the “whys” of the up-then-down see-saw I had been stuck on for so long.
Last but not least, I found out about all the health benefits of alkalinity and kicked-started the change with a regime of green drinks and the addition of an alkaline water filter (more on that later).
By the following spring (2012) and having also pursued a course of natural hormone therapy to stabilise my previous swings and to help counter the worrying trend of osteopenia that had flagged up in a recent bone scan (another very typical side effect of long-term chronic illness), I was feeling almost brand-new and so this ushered in a whole new period of quantum leaps.
A massive eye-opener was having it suggested, by one of my therapists, that I was prone to hyperventilate (if you take a breath and hold it and can only do this for 35 seconds or less, this may be you too as most people can hold their breath for 45 seconds or more) and therefore, very likely, prone to respiratory alkalososis. This causes a rise in blood pH which then stimulates a switch-over from the usual aerobic functioning of the mitochondria to the anaerobic mode of producing energy, called glycolysis. This, in turn, creates a build-up of lactic acid in the muscles, creates a poor antioxidant status, poor hormone control and a variety of effects on the endocrine system (especially relating to the thyroid and adrenal glands – a whole new complex territory of trial-and-error investigation when it comes to Fibromyalgia) plus, of course, a lack of oxygen getting to the muscles. All of this is exacerbated when blood sugar is too high (the body’s natural response being to shut down blood supply to the muscles during a spike in sugar, to protect them from further damage), so explaining the intolerance to sugar that I had already noticed due to the acute pain-episodes it so often triggered.
A catch twenty-two is that muscles need to move and contract a great deal to rid themselves of excess lactic acid and as glycolysis normally kicks-in during intense exercise, the body usually rids muscles of excess lactic acid through the very movement that is already taking place. However, where glycolysis takes place because of chronic systemic failure, the resultant lack of appropriate oxygen-supply to muscles makes movement all too painful to bear – leaving excess lactic acid where it is and so creating the stalemate of muscle spasm and fatigue, burning, cramping and inflammation that is the familiar “locked in pain” of someone with Fibromyalgia; in other words, you hurt if you move, hurt even more if you don’t!
Understanding this also helped me to join another dot – the fact that mosquitoes seem to find me (and many others with Fibromyalgia or Myofascial Pain) utterly irresistible, a bullseye target on every holiday, and that the resultant bites become inflamed and turned into an infected mess – not a pretty sight on holiday legs! My research into Myofascial Pain Syndrome had flashed up the presence of excess lactic acid in the skin as a cause and I now understood why this was the case. It also helped me to grasp the skin-burn symptoms and localised rashes that had plagued me and why drinking alkaline water brought me so much relief (see more about alkaline water below – I no longer drink this regularly but do consider that it helped kick-start my recovery).
Typical effects upon the nervous-system of glycolysis are paresthesia, electric-tingling, numbness and dizziness – all very familiar territory. It can also cause the (alarming) angina-type chest pains of costochrondritis that I have experienced episodes of many times over the years; again, something that benefits from Myofascial Relief Therapy.
What’s more, magnesium plays a significant role in the delivery of energy to body cells yet a side-effect of respiratory alkalosis is that the body is not able to hold on to an adequate supplies of magnesium to serve this function and so keeping supplies of magnesium topped-up can be crucial to mitigating wide-spread pain and muscle cramping. I take a good magnesium supplement every day and, whenever I experience an episode of severe pain, my first step is to temporarily increase that to double dose as well as using Epsom salts in my bath water.
This whole leap in my understanding enabled me to see how a sugar-free diet was most appropriate to me, avoiding the complex carbs (that includes bread!) that trigger spikes in blood-sugar. A new understanding of how toxic stress encourages the mitochondria to malfunction helped to explain why toxicity triggered so much pain and was to be avoided if I wanted to break the cycle (more on this later). I was also encouraged to add more antioxidants into my diet (olive leaf extract and drinking green tea being my favourite sources) and began to newly understand the importance of the Co-enzyme Q10, L carnitine and D-ribose I was taking as all of these are key to the functioning of the mitochondria.
Reaping the benefits
By 2013, my health was on the steadiest footing it had been on for years. Apart from monthly sessions with a Myofascial Release therapist, I was self-managing my health through excellent diet and supplements and feeling more energised and stable than I could even begin to remember. My hair and skin were glowing, my weight went down to where nice clothes fit me again, my normal~healthy appearance was back or possibly exceeded as people kept commenting on how “well” and “glowing” I was looking, I was loving my work and stretching myself into a whole new territory with my painting and writing. Our travels, that year, were the least challenging they had ever been for a long time, with none of the severe exhaustion I was accustomed to, either during or straight after our trip; we even went cycling! In short, I was relishing life and having fun again.
Still unwrapping endless gifts
There isn’t one single aspect of my journey that hasn’t revealed gifts to me along the way; especially teaching me so much about my own self-imposed limitations; those complex inherited and culturally imposed belief systems I had been operating under all of my life, instilling irrational fears that had kept my world small for years.
Yet even as I set about dismantling so much of what I used to believe in, block by block, I still managed to do this without turning on myself in self-judgement and that’s because self-love had become the most powerful tool in my thriving kit, bar none.
Some of the most cathartic moments of my journey were the junctures where I came across yet another version of a lack of self- love (because it is a master of disguise and dresses itself up as many things) and, through identifying whatever this was and moving through it with love, was able to shift into even more expansive territory than at the last hurdle. This became such a wonderful game because wherever I identified a lack of self-love, and moved through that blockage by loving myself even more, I was guaranteed to find a whole new world waiting for me on the other side. There is no other teacher that gets closer than Matt Kahn to the subject of self-love and how this can transform your life and so, if this interests you, I encourage you to find him on YouTube under the name True Divine Nature.
There was a stage, a couple of years ago, when it took the act of looking deeply into my own eyes in the mirror, and having that long-overdue chat with myself on the subjects of self-love and gratitude, to shift things to the next level; finding that holding my own gaze was far harder than I could ever have imagined and that it was cathartic, emotional and utterly transformational to do so. Having an eye-to-eye conversation with myself about all the things I had been through and my heart-felt appreciation of my own company along the way was one of the most powerful things I ever did. It took me through a rainbow-spectrum of many emotions (and many tears) until I came out the other side – in love. This is a mini-ceremony I now re-enact daily in the form of frequent, hand on heart, declarations of “I love you” to myself as well as moments where I make sure to look into my own eyes and hold that gaze with words (or thoughts) of gratitude, even if it is only while cleaning my teeth. The hand-on heart affirmation of self-love (simply, “I love you” said over and over – again, I refer you to Matt Kahn for more explanation of how transformational this can be) is a powerful tool; one that has got me quickly through extreme panic attacks and the most terrible pain; it’s also one I have taught to family members and friends, with some incredible results, so all I can say is try it.
Much of my recovery process involved combing through my experiences and identifying factors that triggered a reaction – and, in so doing, I managed to identify many of the areas of life that weren’t working for me on a far broader level. Thus, I came to love my own triggers – in their way – for providing the metaphor that led me to deeper understanding of my own stuck-points (something which happened time and time again).
For instance, the extent to which I came to realise how any kind of stress, worry or feeling of overwhelm triggered pain and unpleasant symptoms was a huge area where this process of combing for triggers served me well. It helped me to identify all of those quite pointless and therefore obsolete sources of stress in my life and to eliminate them, one by one.
Obsessive perfectionism was one of the first traits to be shown the door, especially when it came to the belief program that I must keep the house looking visitor-ready at all times (or even any of the time when I was incapable of housework). There was simply no place for this attitude in my priorities anymore and I am so glad to have given up the time-wasting nonsense that it was. My house has a permanently lived-in look these days and that’s perfectly fine, with me and with everyone else. Bit by bit, I recognised the obsessively pointless perfectionism in so many area of my life (all these were just made-up opportunities to find-fault with myself so, in short, an absence of self-love) and began to love things – and me – just the way they were.
The fact that runaway emotions caused so much pain to be activated in my body led me, first of all, to avoid giving rise to these at all costs, without really going into the “whys” of this very deeply. I then began to notice how much better life felt without these extreme experiences (you know, the times when you allow yourself to get all stewed up about nothing very important) and to see how they were all born out of some version of fear. Put another way, they were a cry, from my inner child, for more love and attention and so I was able to bypass all the drama and get straight to the self-love part, delivered by being even more kind and gentle towards myself than I was being a moment before. In short, I taught myself to “chill out”, to relax, to listen to my needs, to slow down; to turn to happier, gentler thoughts or activities.
One of the most cathartic things I ever did was to take the stand that I loved myself too much to subject myself to the endless tirade of horror, stress and misery that is delivered by the news media and other information sources and I now select where I choose to place my focus, guided by how this feels in my body.This has nothing to do with pretending everything is alright when it isn’t; it is simply a case of recognizing how best to be loving towards myself, which has nothing to do with becoming overwhelmed or upset with myself or others. Taking responsibility for where we place our focus is a very big deal – so if you want to delve more deeply into the science of how our thoughts profoundly affect our biology, and how the perceived dangers in our environment affect our very cells (the field of epigenetics), I refer you to Bruce Lipton‘s book “The Biology of Belief”.
Other triggers were very easy to eliminate – the very reason why being inherent within the thing I decided to get rid of, like the eating of processed food or loads of sugar, where the reward of giving them up was that my diet, health, weight, energy levels and appearance improved dramatically (much more on that in the Appendix).
I was led to explore a whole world of natural remedies and healthy living practices that have greatly benefited me – and will continue to benefit me and my family all of our lives. This allowed me to regain my trust in my own instincts to handle my own body and its needs without feeling like I have to run to the doctor or chemists whenever anything goes wrong (I have not been to see a conventional doctor for years). Letting go of the belief that I was a helpless leaf blown on the wind and that only someone medically “qualified” could save me was a seminal step, a giant affirmation that launched me into recovery mode with intuition as my greatest tool. There is so much information to be discovered “out there” these day – and while not all of it is reliable, not all of it isn’t. Combined with the confident knowing that you have access to your own highest wisdom at every turn, you begin to gain a sense of what feels appropriate to your own health, including times when you need to call on outside help; but my first port of call, these days, is myself.
Over the course of recent years, I find I’ve amassed quite a wealth of home-remedies for a range of common conditions, as a result of which my family enjoy a swift passage through a whole range of conditions that have other families on a perpetual loop of winter colds, aches, allergies, infections and rashes. In fact, as a family, our tendency to suffer common colds and so on has reduced dramatically since I brought these quick-acting remedies and healthy eating and lifestyle habits into our household.
I was already aware of how affected I felt by the Electro Magnetic Forces in my environment (and one of the first things to find a new home – no longer my home – was the cordless phone) but I steadily became aware that I was being affected by full moons, solar flares and geomagnetic storms, especially as Sun Cycle 24’s period of Solar Max got properly underway from about 2011. It got to the point where I knew that a solar flare had “happened” even before they announced it, and it mattered not whether the resultant CME was earth-bound, I felt it in my cells anyway. If this sounds all to weird, or piques your interest because it sounds like you, I can assure you there are thousands of us electro-sensitives around the world and refer you to a useful E-book on the topic – “How Solar Flares Help You Evolve” by Heather Carlini who has compiled data gathered from many of them (available from the Carlini Institute).
My super-sensitivity to EMFs, geomagnetic forces and other cosmic-unseeables, once I got over thinking they were life-threatening, became fascinating evidence that I am an energy body co-existing with other energy bodies in an energetic universe, helping me to enjoy an awareness of my profound relationship with the wider universe. I now love that I share experiences with the sun and moon at times of solar flares and shining-fullness, that my body responds to geomagnetic storms much the same way as the Northern Lights that dance colourfully around the earth’s axis points, the fact that I get to play the game of who will deliver the latest space weather report first – me or spaceweather.com (a site that is worth bookmarking) – because I can always tell when something has happened “out there”. Owning up to these cosmic inter-relationships can be so empowering – you would be amazed how many of my otherwise healthy friends who suffer from occasional migraines had no idea that these often corresponded with days when the sun was at its most active!
My relationship with all other energy bodies on the planet – that is, my co-occupants of planet earth – has also become much more profound since I have come to understand how we are all energy beings passing electricity between us, all of the time. Plugging into this informs your ability to understand why you are picking up on a certain atmosphere in a room, why you are attracted to certain people and those times when you just “know” something is going to happen. These days, electric currents are my modus operandi and I welcome the messages they deliver, they are my direct telephone line to my Highest Self. The very goosebumps that form on your skin when an idea hits you from nowhere, a strangely synchronistic occurrence happens or a person contacts you when you were just thinking about them is like a giant thumbs-up from your cosmic self to draw attention to the kind of information that will help you on you greatest journey and the reason that this happens is that our skin is wired-up to read electrical messages from the cosmos – and those of us that are already super-sensitive are most ready to jump on the road with this advanced technology!
Work with chakras and coming to understand the human energy field and the extent of its influence, which far exceeds what we encounter as the physical body we inhabit, became a key to my understanding of how we all impact upon each other. Over the years, I have immersed myself in books that help me grasp the science of how we are all connected and, in very profound and influential ways, function as a unit whilst simultaneously being the highly individuated beings that we all are (I recommend looking up Greg Braden and Lynne McTaggart on these topics but see Appendix for books that made a real impact). The way all of our hearts connect to each other, planet-wide, is the subject of much – truly mind-blowing – scientific study and I point you at the Heart Math Institute (HeartMath.com) to read more and find out ways that you can go about feeling part of that. Allowing this knowing to become part of your daily reality can radically alter the way you view the world and the people living on it.
My own very-profound reactions to EMFs in a modern world where energetic interference is rife, due to our use of wireless technology and so on, have taught me some very useful things; for instance, to avoid being permanently attached to electronic devices, especially at bedtime (and to never sleep with these devices in the same room), to allow myself “quiet times” when I step away from these potential sources of interference to my natural rhythms and – perhaps most important – I have learned the importance of grounding myself.
Grounding – by standing or sitting directly on the earth, walking bare foot out of doors, leaning against trees and sleeping on a grounding mat, also wearing barefoot-style shoes almost all of the time these days (which are so comfortable and allow the foot to spread, breathe and self-massage in ways that have multiple health benefits) – has been one of the simplest and most useful techniques to incorporate into a health regime. Whenever I feel triggered or overwhelmed, I know this simplest of techniques holds a solution to bring me back into the containment of my body in a way that anchors me and calms everything right down. I have also learned that, whilst it can feel incredible to meditate and have these amazing, heightened experiences that put us back in touch with our broadest Self, we are “down here” in a body by choice and when we act as though we don’t want to be here anymore, or prefer to zoom off somewhere else than to confront our domestic reality, the body starts to shut down. Grounding is like an affirmation that I DO want to be here and keeps the body’s systems running smoothly and consistently to that tune. At times when I feel pumped full of electricity – particularly at full moon or after a solar flare – just getting back in touch with Mother Earth can allow that electricity to pass quickly through the cells of the body and to dissipate so that I no longer feel “frazzled”, headachy or in pain. Having the perfect excuse to sit down on the banks of a river, every day, to while away five or ten minutes listening to birdsong – because its good for my health – is also something to celebrate!
Increased awareness of my super-sensitivity towards all those other things that trigger me – from chemicals to certain people – has elicited the same kind of approaches to dealing with them as above; including owning the right to exercise preference (which includes avoidance, if that’s what feels best), the usefulness of remaining grounded when a trigger is within range, and coming to know where my space ends and the territory of another begins. This latter includes the importance of understanding that other people’s “stuff” is not my stuff – even when it comes to children and their many problems – and so these can all be put down and stepped away from, without feeling guilty. In fact, you are doing that other person a favour to do so. As a result of this radical new level of understanding, my reactions to outside stimuli have become milder and, in some areas, non-existent and I am, overall, calmer and much less overwhelmed than ever before in my life.
Letting go of “stuff” that is not yours – that doesn’t fit your blueprint – is such a big part of recovery from Fibromylagia that I hardly know where to start. As I’ve mentioned above, we tend to be super-sensitives who hold on to other people’s baggage and all the hurts we’ve ever received – ever, across multi-lifetimes – and these things get squirrelled away and stuck in our energy fields, our cells and the myofascia that wraps around our muscles and organs, causing the blockages and distortions that manifest as pain and malfunction. All human beings do these things but perhaps those with a propensity to develop chronic illness do it even more than most, becoming a sort-of storage system (or messy old cupboard, with everything thrown in) of stuff we would do well to get rid of. Detox, of one kind or another, is therefore a huge part of any recovery plan, with the proviso that too much too soon can be as harmful as not doing it at all.
Myofascial Release Therapy will go a large portion of the way to releasing emotions that have become stuck in various parts of the body, which is why I heartily recommend it as both an acute treatment and a maintenance program. Don’t be surprised to discover that a quick tweak to your myofascia around, say, your right hip also releases a shed-load of tears as there can be a surprising amount of old emotion stored up in the body, especially (for women) around the pelvic basin, though heavy sobbing can pass through remarkably quickly and just as easily be replaced by hysterical laughter as the full release takes effect. The first time this happened to me I looked to my therapist for some clue as to whether she thought I was mad but then it was obvious she had seen it all before!
Another rite of passage is letting out any old-stuck anger from your field, especially if the pain of Fibromyalgia (or old programs dictating restraint and politeness) have meant that you have avoided having a much-need tirade to let it all out. At one, very cathartic, point in my recovery I let out all the stored-up anger related to the actions of a couple of individuals from my past, one of them my ex, and managed to break the handle off my favourite hairbrush in the process – but the release that came afterwards was incredible. Writing down any old grievances and thrashing the piece of paper to smithereens against, say, your mattress can be particularly effective, as can burning the account of whatever it is you have just got off your chest (following up with oodles of self-love and appreciation). It can be surprising what residual anger is still in there, after years of progressing along a recovery path thinking you have “let go of all that”, and I was recently amazed to discover that I still harboured some old-buried anger in my cells, this time directed at my father for all the ways he had let me down or abandoned me as a girl (actually, I was able to identify this one as the root to all those later “failed” relationships). The anger-tears-laughter-love-and-appreciation rainbow that this took me through over the next twenty-four hours was remarkable and had a finality to it that played out in my cells as a feeling of such incredible lightness and sparkly health the next day. I was also able to step back into a very real-feeling place of love and gratitude for my long-deceased father at the end of what amounted to one of the biggest healing-sessions of my life; and I instigated it!
Detox, for me, has now extended to the regular use of a far infrared sauna, which is not only therapeutic because of the lovely ambient heat that has a wonderful effect on muscle pain and locked-up myofascia, but because of its unique ability to release toxins from deep-storage anywhere in the body without putting strain on the organs since this takes place through the skin. An inherent problem with undergoing conventional detox programs, for someone with Fibromyalgia, is that flushing released chemicals through an endocrine system that is already under immense strain can make you feel much worse before you feel better but, as long as I take a thorough shower straight after using the sauna, I have no such problem with this. Inparticular, I am using this method to great effect to detox myself of mercury (more on that later). The home installation of a sauna the size of a shower cubicle cost just over £700, was quick and easy to put together, requiring only a plug socket, and affords me regular use of this wonderful, relaxing, pain-relieving facility as often as I want, which is usually about three times a week.
As a relevant add-on, I strongly recommend bentonite clay as a gentle detoxifier. I have built up to using two scoops of this in a warm bath up to twice a week if I feel in the need of some help releasing unwanted chemical load and other aggravants (you will know when these times are if you listen to your cells) and find it hugely soothing and conducive to a great night’s sleep.
Even my reaction to the inner mental provocations that used to come up…the old urges to push myself, to go beyond the point of comfort, to do what was “expected” of me…became softer over time. I then learned to surrender into that softness and into “what felt good” and to allow that it be alright to stop, to let go, to identify where I needed to be by the feeling of ease that it allowed me to experience in my body. In short, I learned to read my body’s signals and that led me straight into dialogue with the heart, which felt like a homecoming. These days, my head can make suggestions but my heart has the right of veto. I feel more “on-track” and divinely guided than at any other time in my life as what I am listening to feels like a higher source of guidance that genuinely has my back covered; not that old, internalised task-master that used to boss me about.
The empathic tendencies that once felt like such a burden, or even a curse, have largely been turned over to more constructive use whereby they serve as the happy reminder that we are all connected to each other; yet without having to feel like my energy is being siphoned off in every direction. This modification has enabled me to step confidently back out into the world, without fearing that it may become too draining, painful or risky to “put myself out there”, professionally or otherwise.
As the project-obsessed control-freakishness that was once my determining trait became obsolete (due to the fact I had been forced to admit I was in control of nothing except the very moment I was standing in and the thoughts I allowed myself to dwell on) I was able to let go of all that I once held to be important and start again, from the ground upwards. Learning to use the built-in gauge of my own health, I could now reconstruct my own world of priorities and choose reactions from the heart, not a feeling of “ought to do”. When my body became triggered, I could take this as a clear message that I needed to slow down or stop altogether. Like learning to fly an aircraft in some sort of virtual-reality flight game, paying attention to this inner gauge began to serve me well as I learned to pull back on the control stick before my plane literally hit the ground – and so, while near misses still happen, actual crashes have become the rarity. In the meantime, much more time is spent gliding in the air, enjoying the kind of views that I used to completely overlook due to all my rushing around and firefighting.
In short, knowing that I needed to relax (or drop) all of my old ways in order to feel better pushed me to do the very best thing for myself, over and over again, until I got the hang of it all. I have become calm, centred and far more “chilled-out” than at any other time in my life – also virtually schedule free, much more spontaneous and no longer outcome-dependent, taking things (even the unexpected) as they come rather than planning everything far-up ahead and seeking guarantees. Having experienced this way of life for some time now, I no longer choose to be any other way (even if it does occasionally infuriate anyone seeking longer-term commitment from me), enjoying such inner tranquillity and spaciousness, such a sense of unfettered possibility and playfulness, that its like a whole different world to the one I thought I knew just a decade ago.
Who moved the finish posts?
So, having come this far and even managing a few loop-the-loops but, most of all, knowing how to steer myself in a steady line for fairly sustained periods of time by 2013, it started to mystify why I continued to experience crashes at all – but I did; often without warning or obvious trigger, even if the gaps in between were getting longer. It seemed to make no sense.
More than that, I had started to notice a worrying trend of increased bouts of peripheral neuropathic, tremors, muscle spasms or weakness and pain, also of eyesight blurring, quite a run of intense headaches and the return of some of the brain fog. This was all very baffling; why had my recovery plateaued-out or even stalled?
A new trigger that had been (literally) under my nose all along came to light early in 2013. I was crunching on something hard, one day, when I broke one of my old “silver” amalgam fillings – something I laughed about as I pulled this blackish-grey lump of metal out of my mouth. When I woke the next morning with such a severe Fibromyalgia flare underway that it shocked me, I was no longer laughing.
There was just enough time to hurriedly research the topic of “mercury-containing” amalgams and take in some of the horror stories associated with these (and the even more dire side-effects of removing them carelessly) before dashing off to the dentist to have the remains of my filling not-so-safely taken out, without any of the recommended safety removal protocol followed. My dentist had never considered filling-removal particularly risky before I mentioned it and my safeguards amounted to some wet tissue placed over my nose and the window open as she drilled the toxic material from my mouth.
With five more old (and fairly compromised) mercury filling still in there, and this newly acquired knowledge that mercury may very well be one of the biggest Fibromyalgia triggers of all (there is plenty of information “out there” to suggest this), I was naturally apprehensive of what lay ahead of me and left it a whole year before taking it any further.
After another rough month or two, early in 2014, I resolved to have these taken out and found a specialist dentist who could do this following the recommended safety protocol, using a rubber dam and the appropriate vapour extraction equipment. By then, I had had the time to draw some crucial dots together, like the fact my health had taken the final nose-dive into Fibromyalgia straight after having a flu vaccination in 2004 – these vaccinations are often touted as the precursor to chronic health issues related to mercury poisoning due to the common ingredient thimerisol (mercury) as a preservative. Looking back even further, general declines in my health could be said to have corresponded with the times when I underwent the most dental treatment to put my fillings in, when I was about 14-15 and again in my mid-twenties.
Advice about the importance of following the safe removal protocol was literally everywhere on the internet, along with endless anecdotal accounts of recoveries from chronic illness and many websites listing mercury-related symptoms that could have been the story of my life, going back twenty years to those first arbitrary aches and pains of my teen years and repeat viruses of my twenties (studies have shown that mercury interferes with the effectiveness of antibiotics). In fact, there wasn’t a single twist in my story that I couldn’t potentially attribute to mercury poisoning. My new holistic dentist presented me with a questionnaire to complete and there were only three symptoms out of about thirty that I was able to answer a definite “no” to.
Mercury toxicity could even potentially account for things I had never dreamed were anything but personality traits such as extreme introversion, significant loss of confidence and the sudden onset of irritability that often came with a flare of my physical symptoms, along with other mercury-traits that are labelled erethism.
My new dentist had his own story to tell: his health was literally falling apart with ME until a dental colleague suggested that his mercury fillings might be the issue. When their removal led to his complete recovery, he made safe-removal of amalgams his specialism and now treats people from all over the world, most of whom arrive with one chronic illness or another. He estimates that approximately 70% go on to recover fully after safe removal of their fillings, either within weeks, months or over the next year or so. As soon as I started listing my journey through the Fibromyalgia years, he began nodding as though he had heard it all before – because he had!
Of course, there was trepidation in my mind as I considered what was being handed to me here, which was the potential for a full recovery. What if the procedure made me worse? Was I ready for recovery? What did full-recovery even mean? I hardly knew what this thing was that I was gunning for, it had become such a vague concept in my mind, and I was almost reluctant to risk setting-back all the progress I had made for anything less than the full guarantee I didn’t have. Mercury had become the very symbol of everything Fibromyalgia had been to me and I hardly knew whether to take it on or leave it in situ and learn to live with it. Even the safest removal procedure was likely to mobilise long-stored mercury from body tissue, which could easily be reabsorbed back into more lethal positions, such as in brain tissue. Therefore, even if I had the fillings taken out, I may have months or even years of slowly chelating the rest of the mercury out of the parts of my body that had “safely” stored it for all these years; so was I ready for a whole new kind of recovery journey to begin? Could I face any more recovery projects? Had this become some sort of hobby that I was addicted to where I sought endless challenges to do with my health? Did I even know how to be well?
Choosing to be well
I decided to go ahead with the removal of my fillings, over three appointments, a month apart, preparing my body beforehand with a host of recommended supplements, taking plenty of charcoal capsules beforehand and following up with Seagreens, chlorella and spirulina, selenium and increased doses of MSM. The three weeks that followed the first removal (which uncovered a desperately rotten tooth underneath, which had to be cleaned out, drilled almost completely away and replaced with a crown) played out like a tour of all my oldest symptoms. Even some of the earliest, most bizarre aspects of Fibromyalgia that hadn’t really played out for years now seem to make a return appearance, a swollen Bartholin’s gland, heart arrhythmia and chest pain, leg-buckling muscle weakness, random numbness and pins and needles, terrible neuropathic pains, patches of rash and burning skin, the return of Irritable Bowel Syndrome, incredibly intense headaches and crashing exhaustion and an antiobiotic-resistant bladder infection (klebsiella) that also triggered off intense Interstitial Cystitis. If you add to all this that I was experiencing the usual symptoms of detox; both physical and mental, including my emotions feeling all awry, then it safe to say that I had a fairly rocky month of April in 2014…and still had two more dental appointments to go.
The internet is full of other people’s stories of mercury removal – some of them frightening – and, I admit, I was sucked-in to all this for a short time, not helped by all the symptoms I had unleashed. Then I woke up and remembered what I was doing all this for and that this was my story, not theirs. Whilst I list some of the more useful “mercury” resources in the Appendix below, I recommend you keep even these and any other anecdotal advice in proportion and remember that it is YOU, and only you, who gets to determine the outcome of any procedures you undertake and that, when we focus on certain outcomes (either positive or otherwise), these thoughts actively affect our biology. For the record, removing my mercury fillings was one of the best steps I ever took and, while the worst of these symptoms lasted for almost a month, I got through them pretty quickly and am well-and-truly back on the recovery-path now, as well as so relieved to have got those fillings out. Like yet another gift in the list of many, the opportunity to confront mercury became an even bigger opportunity to confront how much I really wanted to put Fibromyalgia behind me; it forced me to front-up to all of my tall-talk about recovering and to take a giant step into the unknown. And I took it.
Out of the chrysalis
When the time came for the second mercury filling removal, I was conscious of a whole new optimism building in me. When the dentist slipped on my protective glasses, the fabulous colour of them sealed that mounting feeling of excitement into place: a different shade of lens to normal, they coloured the whole sunny room with the deepest saffron yellow, yet with highlights that were in violet. It was like total immersion in the same golden-yellow of the solar plexus that cracked open the day I saw Dominic Knight for the NLP session, back in 2011; yet with the crown-chakra violet of my Highest Self standing by, ready to squeeze my hand and tell me it was all going perfectly to plan.
As before, I had an uplifting audio ready to listen to while the work was being done but, this time, found myself drifting off into my own revery. To the distant background sound of the drill, I became vividly aware of my heart as a torus, with the very light force of me flowing in and around and back in and around, in a self-generating, self-feeding momentum…only, as this life force grew to incorporate the whole of me and then return back to my heart, anything that felt blocked, or heavy, or greyed-out, anything that felt like energetic plaque built-up in my field from this or any other lifetime was drawn into the neutral void of all potential at its centre where it was transformed or dissolved away. Then the white glowing light that had built up around my torus-heart became like a motion blur of rapidly flapping wings and, as I asked to see more clearly what this was, it slowed down so that I could see it as a perfect blue butterfly which, in slow-motion, was opening and closing its wings with such rhythmic grace to the clearly audible rhythm of my heart.
This was true alchemy at work. What had seemed like a procedure to be dreaded the very first time I underwent it had been transformed into the most powerfully cathartic instrument of transformation this second time around. The dentistry taking place felt like a metaphor for something far deeper taking place, a grand healing at the energetic level as the heaviness that was mercury was extracted from my body. Like that other time, three years before, I came out of the treatment session knowing something far more momentous than I could explain had just taken place and I felt elated, celebratory and new. I had taken another quantum leap.
Further useful topics are covered below as an Appendix and, whilst the story of my recovery did not end abruptly here (and I underwent a final procedure to remove a mercury filling in June of last year), it DID feel distinctly like the beginning of the end and I have continued to steadily improve on all fronts.
All of the information shared in this post is anecdotal and none of it is intended to serve as a medical guide to recovery or even a resource for diagnosis. Please read my account for inspiration only and then seek medical advice as appropriate before taking any of the steps I refer to.
Some further reading and a list of information resources:
Family, friends…and still enjoying life with fibromyalgia
A factor of long term chronic illness that almost defines the condition is the sudden withdrawal from the world that tends to come with the territory. If you were one of life’s natural introverts beforehand, you may reach a point when you realise you can no longer see the line between natural inclination to keep to yourself and a necessary survival tactic to cope with your illness. You may even start to wonder whether your health issues are some sort of mind-trick, a fabrication that provided you with the perfect excuse to withdraw from life that you suspect you were always looking for. This forces you to look deeply into your motivations and to question all of your friendships and relationships, seeking to examine what it is that you get out of them and what, if anything, is missing from them.
At some point during my recovery, realising I was now living all alone apart from my immediate family, I was forced to consciously choose whether this was the way I wanted things to be or was it just accidental isolation. It forced me to reach out to life and invite it in, if I wanted more from it, which I found that I did. New connections were made through common interests and had nothing to do with geography (most of my friends are scattered all over the world, these days). I now find that friendships occur in ways that feels more synchronistic and by higher-design than through complete randomness, which produces some really special and meaningful interactions that feel unexpectedly profound, whether I have met these people face-to face or not. The emphasis, these days, is upon quality rather than quantity – and I still prefer to be reasonably solitary and independent much of the time in my daily life.
Interactions with broader family and some older friends have changed relatively little when we meet-up…except that I tend to see these people rather less than I did. There is a bizarre way in which, though these groups of people know all about my Fibromyalgia, it is not brought up or made reference to very much, if at all, and so becomes the unmentioned elephant in the room. Part of this comes down to the fact that there is very little to see with Fibromyalgia so people who knew you beforehand struggle to take in that there is anything wrong with you, having no idea what your worst moments look like and generally seeing you at your very best, all dressed up and smiling at social gatherings. Even if there is any initial hurt to be felt about this, I have learned it is best to let this go and see things from their point of view, from where it must be extremely hard to relate to what you are going through. I have come to welcome the fact that those who see me at my best only think of me at my best, which is far better than having so many people imagining me being sickly and in pain. As my recovery progresses, the fact that they never saw me any other way than well feels like a relief and really helps the transition back to full health.
Lengthy evenings of “girl-chat”, drinking loads of wine, going out to crowded pubs or boomy restaurants, burning the midnight oil – all these habits have fallen by the way-side. Taking on friends’ problems can be another no-no and is challenging territory for the natural empaths amongst us; especially as some people are naturally drawn to the calming energy that we are, seeking us out as the listening ear and the bringer of new perspective. Flattered into feeling needed in this way, it is all too easy to succumb to such roles but, in the name of recovery, we really mustn’t, especially if it leads to feeling energetically drained and emotionally deflated. Learning to set appropriate boundaries and putting self-love first is a major recovery step.
Of course, the people I spend the most time with are my husband and daughter and they are so supportive in ways that go far beyond anything words could describe. My husband has been my rock through thick and thin; has accepted all the twists and turns in the road with steady heart and strongly supportive arm to lean on; has accepted all of the costs of therapies and supplements without quibble; showing unwavering faith in the fact that I have sensed my own way out of this maze and seem to know what I am doing. At no point has he ever wavered in his firm belief that I am in recovery.
My teenage daughter is wise beyond her years and is my greatest cheerleader as well as the source of endless inspiration, joy and much laughter. I am in awe of the incredible young woman that she is becoming and know that many of the pearls of wisdom that I have collected along my journey have been shared with her in ways that will serve her all her days. Throughout all of this long saga, the one area I don’t believe to have been compromised is the parenting of my daughter; in fact, in ways too numerous to count, what I have been through has provided a whole series of gifts relating to my role as parent, ranging from an ability to be at home giving her the attention she craved to providing a wealth of treasured insights that I have been able to share with her. She has become an even greater (and better informed) advocate of a healthy lifestyle – especially relating to diet – than I am to the point I wouldn’t be surprised if she wrote about this or used this somehow in her future career.
Importantly, I’ve never allowed fibromyalgia to stop me from doing anything I really want to do and we have travelled to every single destination that has called to us over this last decade, with no compromising. I walk in beautiful places ever day with my dog, we go to concerts, festivals, art galleries and places we love. There is such a lot of fun and laughter in our lives and this has been the best tonic of all.
Rescuing yourself…because no one else will
When chronic health tips your world into disarray, its a natural inclination to want to turn to the family doctor for support but the reality, in the UK, is that GPs are simply not up to speed with Fibromyalgia, ME or Chronic Fatigue. As likely as anything, they will run loads of tests that come back in the normal range (though these conditions are infamous for hovering just fractionally outside what is classed “normal” on multiple tests, without being picked up) whilst offering prescriptions for antidepressants to cheer up your outlook. When my own doctor thrust such a prescription at me, nine years ago, I left her office and never returned. Since that time, I have found a far more understanding family doctor and, by way of keeping her up to speed, have filled her in on my journey – earning her respect – yet she freely admits that I know far more about Fibromyalgia than she does!
Conventional doctors can also have very strong opinions about patients who do their own research and form their own theories; but, as someone recovering from Fibromyalgia, you are left no choice but to do this as nobody knows your own body better than you do and it this intimacy, combined with trial and error, that gets you there in the end. You have to be prepared to take full responsibility for your own health in order to make a full recovery and that has been one of the greatest gifts of Fibromyalgia as I now treasure the autonomy and self-reliance this has given back to me; its also an attitude I have passed on to other family members, not least my daughter, which stands her in good stead for the future. Compared to my parent’s generation, who trusted the family GP implicitly and took everything prescribed to them without question or even reading the small-print, this feels like an evolutionary step, especially as their stance failed to serve them in the end. My father was on a host of side-effect causing medications for over thirty years and my mother’s early liver cancer symptoms were repeatedly waved off as too much exercise and a skin rash. Being in touch with your body’s own signs and clues (rather than surpressing them drugs) can be an absolute life-saver.
The tendency – even by some more “new-age” therapists – is to treat the symptom and not seek the underlying cause and there is such a chronic lack of joined-up thinking where it comes to Fibromyalgia. It is typical for each so-called specialist to look at individual parts of the body as an independent unit when, actually, the premise of this condition is that a system-wide domino effect is happening and you simply can’t treat each part of it in isolation. All the many different events occurring, however bizarre or seemingly unrelated, need to be mapped out together and tracked, and any potential linkages brainstormed, to make any headway at all.
Loving food more than ever
My diet has been utterly transformed from what it used to look like and I now relish food more than ever before; another gift received along the way.
An early discovery was how sugary food and any refined carbs made me feel so much worse, generating that instant high followed by the severest kind of crash, pain and sugar hang-over afterwards. It was a no-brainer to replace what I could with the slow-burn carbohydrates that kept my energy on steady drip throughout the day.
A real discovery for me was D-Ribose; a naturally occurring sugar which serves the muscles directly, easing symptoms of weariness, pain and cramping with remarkable efficiency without any of the see-saw effect of refined sugar. During the early months of 2012, when I was really kick-starting my health, I routinely dissolved this in water and drank it at the start of my day and I still use it as a sugar alternative on cereal or in hot drinks when my energy crashes, considering it to have been one of the key players in my health turnaround. These days, I take it infrequently, as needed.
A natural stage in my food-journey was to look closely at the quality of the food that I was eating, to avoid pesticides, GM, preservatives and other additives etc. and so we became almost entirely organic two years ago (no hardship there as the food is wonderful), ordering the vast majority of our vegetables and fruit from an organic farm supplier and supplementing this with best quality, almost entirely organic, food from the supermarket. Compromise is just not part of our eating plan any more as we would rather spend more on ingredients and take longer preparing food than eat rubbish and this attitude has benefited the whole of the family.
I’ve always preferred to prepare food from fresh ingredients and so this has evolved into cooking light and appetising meals from scratch using fresh seasonal vegetables, nuts, beans, grains, eggs, cheese, tofu and pulses. I cook creatively, spontaneously, without using recipes, throwing seasonal vegetables together in a way that is never hum-drum and always delicious. Since I no longer cook the life out of my food, the flavours and textures are left intact and the introduction of food I may never have tried (quinoa, cacao, coconut oil…), had I not been on this journey, has enriched the whole eating experience.
Coconut oil has slipped into my diet in place of butter most (if not quite all) of the time and is delicious on its own or underneath everything, from marmalade to marmite. Its also great for cooking and far healthier than trans fats or even virgin olive oil (which I also use) when it comes to heating it.
I started to reduce milk in my diet almost three years ago, when I was still struggling with IBS, based on its possible link to inflammation in the body, replacing it with soya milk on breakfast cereal and, since I drink green (and a few other no-milk-added) teas, black decaf coffee or water the rest of the time, milk has gone out of my diet apart from in yoghurt or cheese. Green tea, by the way, is packed full of essential antioxidants – which are crucial for healthy cells!
My other passion is 80% organic chocolate or raw chocolate (full of lovely antioxidants) and I find commercial chocolates and confectionery quite revolting these days as my taste buds have adapted to the absence of sugar.
I’m not quite gluten free but do avoid excessive gluten consumption by eating alternatives where possible. Bread is now a rare luxury, not a staple.
Avocados are one of my favourite things and I eat them almost daily!
Pink Himalayan salt – drank as sol (a salt-saturated solution, diluted into a cup of drinking water) and used as salt on my food – this contains over 80 essential minerals and has multiple health benefits.
The crown in this journey was becoming vegetarian at the end of 2012 and that remains one of the best decisions of my life, on so many levels but not least that my digestion issues have come under significantly better control and that I feel more energised than I ever did as a meat-eater.
Alcohol can be only be tolerated in absolute moderation, though not at all when containing a lot of sulphites, as do many varieties of (especially white) wine, since these trigger acute muscle pain. If I do drink wine, I find I have to stick to one glass and do this only rarely rather than with many meals – which is one of the biggest changes to my consumption habits this year or so but I find I really don’t mind at all. Anything that triggers cellular dehydration becomes questionable when you have Fibromyalgia and the trade-off of one night’s enjoyment in return for hours of pain is more than I am generally prepared to consider.
At the start of my recovery, I made all of my water alkaline using one of the special jugs that are widely available and I firmly believe that this kick-started my recovery and reduced some of the wide-spread inflammation that my body was labouring under. In the longer run, I have decided not to continue with this practice as over-alkalinity can have its own issues. All of these things are widely discussed online and I invite you to do your own research and follow your instincts, informed by how your body reacts to any changes you make. No two people are the same and the acid-alkaline balance is a very fine line to tread; not to mention the fact that a healthy body that consumes a nutritious diet should be able to regulate its own pH levels.
Body care – from the outside in
A natural spin-off of taking what I put into my body more seriously was looking at what I applied to that great permeable membrane that we call the skin! It wasn’t long before I was buying paraben-free, organic hair, skin and other hygiene products, throwing away my aluminium-containing deodorants and ditching the fluoride in my toothpaste.
I’ve also delved into making my own skin products with organic shea butter and love to soak and detox with bentonite clay, which draws toxins from the body and can significantly reduce pain levels – I love this stuff!
Essential oils are a big part of my life – for bathing, aromatherapy and used in my own skin preparations. I use a plug-in oil burning device in my work space every day, playing with combinations of different essential oils for various health benefits.
A large measure of Epsom salts to my bathwater has become my other favourite thing (the magnesium sulphate component absorbs through the skin to detox and replenish these mineral elements, which are so often deficient in suffers of chronic pain). Pink Himalayan salts make another great bath-soak with multiple benefits.
Keep on moving – the importance of exercise
There has hardly been a day since the beginning of this journey that I have not walked my dog; however awful I am feeling, I usually manage to get up off the sofa and outside into fresh air for up to an hour a day, in all weather. The responsibility of dog-ownership has been one of the greatest gifts to my health because of this necessity of putting his needs before my own inclination to stagnate. I don’t think there has been a single day that I haven’t felt better for doing this, however cold, wet or wind-howling it might be – in fact, some of the most extreme weather has been the most therapeutic.
In the winter months, when darker days only add to the feeling of malaise, I know those precious moments of extra daylight out-of-doors have, quite literally, kept me sane and the gentle, regular exercise of walking is what I credit with keeping my body going, whatever else it may be going through. It horrifies me how many people avoid this simplest form of daily exercise and then wonder why their health is far less than ideal, having played witness to its absolutely pivotal role in my own recovery. I would say some kind of load-bearing activity, such as walking, is as fundamental to a person’s wellbeing as getting a good night’s sleep and I would not compromise this daily priority for anything.
Beware, however, of gym-type activities if myofascial pain is one of your symptoms. Flexing and tearing muscles might rebuild them bigger and stronger but, if the myofascia is held rigid over the top of those muscles, this can cause untold damage – as I demonstrated to myself in the early days of recovery, when I attempted to maintain a twice weekly gym circuit to hold on to my mobility. Initially, I felt like I made some headway and then I made things much worse and was forced to give up this kind of work-out completely.
The most effective activity for Fibromyalgia, in my experience, aside from gentle walking, is yoga; especially if you can find a coach who is familiar with yoga for pain conditions, as I have done. My yoga teacher Marie, of Gently Strong Yoga, has tailored a home-practice routine to my particular circumstances and works with me, every eight weeks, to adapt this routine to my evolving needs. Since starting this activity – which I practice most mornings before breakfast – I have found I have much-increased mobility, significantly reduced pain, improved muscle strength and limb flexibility, far less myofascial lock-up…and that I actively look forward to the time I spend on my yoga mat!
At the beginning of my recovery journey, as mentioned above, I used an all-in vitamin compound (powdered drink) made by Enzymatic Therapy, called “Energy Revitalization System”, combined with the Adrenal Stress End supplement made by the same company (note this is not a vegetarian option; I took it before before giving up meat). Both these products are widely available on the internet and can be read about in Dr Teitelbaum’s book “From Fatigued to Fantastic”. I took the vitamin compound (plus some other supplements that it didn’t include) for approximately a year – and believe it kick-started my recovery – stopping when I began to notice that it was making me feel nauseous in the mornings, which I took as a signal that my body no longer needed such a potent combination. Since then, my supplement regime has been roughly as follows:
My daily supplement routine:
- Co-enzyme Q10 300mg or more
- Vitamin and mineral complex (my favourite is from BioCare)
- Super vitamin B complex
- MSM 3000mg
- L Carnitine
- Omega 3 & 6 (I take a vegetarian version)
- Vitamin D 5000iu (high dosage is essential for pain relief and bone strength)
- Chlorella, spirolina etc in a supergreens complex eg. Lifestream Ultimate Greens
- Magnesium (I use Doctor’s Best high absorption) 200-400mg
- Bio-available calcium (from algae or other plant source)
- Olive leaf extract – an extremely potent antioxidant
- Curcumin (fantastic anti-inflammatory and multiple health benefits)
- Nigella seed extract (multiple health benefits)
- E3Live AFA
- Loads of lovely green tea!
- D-ribose – used for energy crash relief or as a sugar alternative on cereal etc.
- D-mannose – a fail-safe wonder relief from cystitis that transformed my world
- 5HTP to manage winter aches, low mood and energy crashes
- Sea Greens(wonderful all-round supplement, recommended for mercury detox)
For pain relief:
- White willow (preferable to ibuprofen)
- Malic acid
- Epsom salts (for bathing)
- Bentonite clay (for bathing)
- Infrared sauna (for wonderful heat therapy and also for detox)
- Heat therapy – heat pad or water bottles preferable to microwave version
- Cold packs
- Small palates massage balls – for self massage of tender points
- Aromatherapy oils
Health management (follow the links to find out much more):
- SAD lamplight therapy and full-spectrum light bulbs everywhere
- Colloidal silver– multiple topical uses and also as an infection-fighting tonic
- Cider apple vinegar with “mother” – far too many health benefits to list
- Coconut oil – as alternative spread, cooking oil and for multiple skin applications
- Alkaline water filter (see above)
- Natural progesterone and phytoestrogen creams (I use Emerita products)
- Phytoestrogen supplements (for hormone management, especially during menopause; I use Nutrition FX; another source, which I have not tried but gets good reviews is pueraria mirifica)
- Grounding mats, sheets etc. from Groundology
- Barefoot shoes and trainers – Vivobarefoot – love ’em!
- Far infrared sauna (this is not the company that supplied mine but is an interesting post about its usefulness for Fibromyalgia)
Therapies: the multi-dimensional approach, taking recovery to a whole new level
As for alternative therapies that I’ve tried, myofascial therapy is my favourite hands-on relief (my myofascial angel is Sue Perry of Two Nine O Five Pain Relief Clinic) and I enjoy the occasional massage but two of the most fascinating modalities I have used on my journey have to be Body Talk (delivered by Karen Best of Enhanced Health) and NES Health – both of which I recommend unreservedly as I know they are responsible for delivering me much further along the recovery route than I would have travelled without them. What I love about both is that they take full advantage of the fact we are energetic beings living in an energetic universe – and that when we tackle stuck-point at the energy level, recovery leaps can be made extraordinarily rapidly. I have come out of Bodytalk sessions both awed and bewildered at how I have just witnessed what felt like energy plugs being removed from various parts of my anatomy, and have walked away from those same sessions feeling completely different, ten tonnes lighter, released, transformed or a combination of all of the above without being able to explain exactly why. If you get the chance, I would say give these kinds of treatment a shot and see what happens as they can help you make a quantum leap in your recovery.
I’ve also talked at length about the difference that NLP (delivered by Dominic Knight in Harley Street) made to my journey but I would say that this very-much depends on the therapist; the two that I have encountered were very different and in a whole different league in terms of what they offered so do your research.
(The information contained in this article is not intended nor implied to be a substitute for professional medical advice; it is entirely anecdotal in nature. Opinions expressed are those of the author and nothing contained here is intended to be used for medical diagnosis or treatment.)
Lynda Money Holistic Therapy in Surrey, UK
Dominic Knight – NLP & Hypnotherapy, Harley Street Clinic
NES Health information
Clare Badrick – Natural therapy including NES therapy in Surrey, UK
Enhanced Health – Bodytalk therapy in Hampshire, UK
Two Nine O Five Pain Relief Clinic in Berkshire, UK
Hollistic Dental Centre for safe mercury removal in Surrey, UK
Gently Strong Yoga in Reading, UK
Books that have made a difference
Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual – Devin J Starlanyl
The Power of Now – Eckart Tolle
From Fatigued to Fantastic – Dr J Tietelbaum
Decoding the Human Body-Field: The New Science of Information as Medicine – Peter H. Fraser & Harry Massey
The Bond: Connecting Through the Space Between Us – Lynne McTaggart
Women’s Bodies, Women’s Wisdom and other books by Dr Christiane Northrup
The Biology of Belief: Unleashing the Power of Consciousness, Matter & Miracles – Dr Bruce H. Lipton
My Stroke of Insight – Jill Bolte Taylor
How Solar Flares Can Help You Evolve – Healther Carlini
NEW and highly recommended Goddesses Never Age – Dr Christiane Northrup
Whilst these websites are just a sample of those I have found useful, I do not condone every word and ask that you take all these with an objective perspective and (sometimes) a pinch of salt as a starting point for your own premise-drawing:
Fibromylagia – an outline of symptoms
UK Fibromyalgia – a useful resource
Fibromyalgia possible causes (when the mitochondria stop working)
Mitochondria Research (useful resource document)
Maximising your body’s performance (the Krebs cycle in relation to fibromyalgia etc.)
Grounding – the benefits to health
How to get this lethal poison out of your body – Mark Hyman, Huffington Post
The light at the end of the tunnel (a mercury detox diary) – this is a lengthy resource, worth dipping into; I have bookmarked it at the most encouraging stage of the process!
A way out of pain – Matt Kahn video