Getting down to the root of my fibromyalgia

For years, I’ve lived with the mystery and frustration of what has been termed fibromyalgia with a whole cacophony of mystery other symptoms circling it like satellites. For many more years, I’ve been on a ride of peculiar health symptoms that always felt as though I my body wasn’t quite behaving in a typical way.

More recently, I’ve come to realise that right at the core of the mystery, I am on the autism spectrum, have hypermobility type Ehlers Danlos syndrome, mast cell activation syndrome (MCAS) and a side-line of Postural Orthostatic Dysautonomia (POTs). When you look any of these up, you will find they are, very commonly, interconnected with one another or overlapping, both anecdotally and in the medical literature, although the jury is still out as to exactly why. Here’s my latest view on that and it makes a much simpler picture for me to handle, going forwards.

Simplistically, my autistic “wiring” and tendency towards EDS, which is a collagen deficiency that is likely genetic (and yes, autism and EDS are common bedfellows), lay me open to a cascade of other effects as follows. Again very simplistically (I aim to keep this post short and pithy with room for expansion in future posts), when I encounter one of many things that serve as “triggers” to my highly-sensitive nervous system, which is an autistic foible (an allergy would be another appropriate term; although these allergies may not always be the most common ones, such as to certain food, though food is certainly included, in the autistic case), this sets in motion a mast cell over-reaction; mast cells being the body’s inbuilt defence response to emergency situations.

This mast cell event then worsens or boosts the effects of EDS and autism as well as unleashing a cascade of side effects to the mast cell onslaught, ranging from tissue inflammation to brain fog, disrupted hormones, over-excitable nervous system, increased pain levels and the kind of flat out exhaustion that happens “completely out of the blue” due to to some subtle exposure triggering this response. When you put all these things together, you have a very great deal to live with and a situation where one thing can set in motion the other and then the other, in ever decreasing circles, unless you work constantly to hold an inner state of over-ride, which is easier said than done when it comes to how the unconscious aspects of physical health tend to perform without our involvement or say-so (so this takes a lot more than just a daily meditation practice to achieve, although it helps). Having people tell you that you need to calm down, look on the bright side or pursue cognitive therapy is nothing short of annoying when you already lead a mindful and optimistic life as these triggers can still “go off”, even when your mind is no longer in a state of reaction, because they are hard-wired into your biology, if not always from birth then certainly from a very early stage of development.

Coming to understand this summary of “what has been going on” all my life has been BIG in ways I am still unpicking (and the epiphany is still quite recent).

Understanding how it also lays me open to that other dysautonomia condition (really, another side-effect rather than its own condition) known as Postal Orthostatic Dysautonomia has also been crucial because POTs is all to do with the relationship between my sympathetic and parasympathetic nervous systems. It can, typically, lead to dizziness, disorientation, increased heart rate, stomach pain or even nausea, in some people’s cases, when so much as getting up from a sitting to a standing position but in my case (of course) the triggers are more usual, yet harder to evaluate. For instance, I seem to be sensitive to broader kinds of transition than simply changing to a vertical position, for instance from day to night (and vice versa), one weather front to another, the transition between seasons or part of the circadian cycle, or even changes in the geomagnetic, ionic and electromagnetic atmosphere. I also find that walking past one of my main allergies, such as mold, an electrical substation or cell phone tower, can have the dsyautonomia effect. Somehow, my body has become acutely and minutely wired to such subtleties and these can cause my parasympathetic nervous system to dysfunction or burn out, for either a few minutes or hours to several days or longer.

It turns out, a very common ingredient in plant based food, known as oxalates, is one of my triggers but only when consumed in excess (easy to do when you eat a plant-based diet) and this has become the latest focus of my attempts to reduce flare-ups and to UNDERSTAND this ever unfolding mystery of my lifetime’s worth of health issues (which I really can trace back to the very beginning of my body memories).

Finding these closely inter-related conditions labelled as “fibromyalgia” or “chronic fatigue” is far from uncommon. I’ve read countless accounts: for instance, of a woman with oxalate poisoning triggering acute widespread pain and dsyautonomia symptoms that stopped when she changed her diet; of people living with years of mystery pain before they realised they had underlying EDS, which shows up more when ostrogen levels decrease; of people, mostly women, wondering for such a long time why they felt so different or struggled so in the workplace (which, often, made them prone to working even harder to fit in and do well), who were prone to sudden crashing fatigue or mystery ailments that came out of nowhere and who often ended up in chronic health burnout in their mid-life before coming to suspect they have Asperger’s; and those with allergy after allergy to a bewildering array of environmental and other triggers that turns out to be MCAS; all of whom have one in thing in common. To start with they were all diagnosed, either by themselves or a medical expert (the woman with oxalate poisoning WAS a doctor) as having fibromyalgia.

Which is not me determining that fibromyalgia doesn’t exist or is “just” a convenient catch-all with no basis in reality, as it is so often used, but that there is so often something else going on at the deeper levels. This is why people like me can spend years and years trying to heal, having periods of what seem like respite and recovery, only to slip back into the side of the pool and find ourselves drowning in symptoms again…and so often ones that are worse than before; because, until we notice those other conditions underlying the primary label we have given to our condition, we can trip up those very things with our attempts to get better, say, with too many “healthy” juices or by simply not understanding how our innate “wiring” cannot be ignored or put on over-ride. We can’t simply rewire ourselves to make ourselves more like other people and, often, the only reason we became “unwell” later in life (as though we were “normal”, whatever that is, beforehand) is that we were pretty good at living with our traits when we were younger, or at pretending we were coping, even to ourselves; or because sheer exhaustion with our ever niggling health issues, plus the effects of mid-life hormone shifts and lifestyle changes, make our health issues show up all the more starkly now, so our bodies reach burnout.

Two things spring to mind here: more women have fibromyalgia, by far, than men…and, possibly by no coincidence, more women “hide” high functioning autistic traits for decades before realising they have them (some live out their entire lives not realising or owning them, not least because they are often perfectionists and high achievers who work ever harder at doing well) plus, of course, women are often hard-hit by menopause and the effect of lowered oestrogen on the body, not to mention the burnout that sometimes comes at the point they can finally stop juggling a professional live with creating a home and rearing children. Just as they do that, this can be exactly when these health foibles show up more than ever, right at the moment they can finally let their rigid inner controls slip by even an inch…only that slip keeps on sliding. Of course, I’m not saying all women with fibromyalgia-type issues are on the spectrum but, in my case, it was the lightbulb of all lightbulbs and I began by reading a whole pile of books written by (rather than about…) Asperger women, as listed in my Health Resources above.

In cases like mine, coming to understand that we may have been born with a different kind of fuse box installed in our wiring compared to other people is the beginning of understanding how to keep our switches flipped on rather than “blowing” constantly; and is all part of a radical degree of self-acceptance, and mastery, that inevitably comes with deep healing. Understanding that to heal isn’t always to eradicate but to “work with” our innate traits is huge. Though what I have learned about my body lately, in very quick succession (since this degree of accelerated understanding only really began 18 months ago, when I finally accepted, after long suspecting, that I was on the autism spectrum, and a few months after that when I tied in the EDS) may very-well have overwhelmed me, it has also enlightened me as in to LIGHT ME UP with a new degree of self-appreciation and awareness.

I newly love (as in, to hold in a state of unconditionality and non-judgement) my innate complexities and, yes, the degree of sensitivity and uniqueness that doesn’t always mean I walk an easy path; and, in holding space for all these foibles to be well-meaning gifts at some level that I can’t always “see” with my logical mind, I have undertaken to remain curious about them and to come to understand them better with time…and, in the meantime, to patiently love and care for myself more.

In this, I have found a new degree of inner-ease this year, in spite of all the health challenges; and it has taught me to breathe through the harder moments, and to listen closer to what my body has to tell me, without falling into assumptions, generalisations, frustrations and bullying behaviours to try and push myself towards some sort of false idea of recovery or by perpetually chasing after some sort of idealised ending to the story. There is no ending while I am still here breathing life, so there is no rush here either; me and my body are conjoined for the duration and, while I seem to have gathered even more labels than ever, which could make it look as though I am further from recovery than before, that’s not how it seems to me.

Really, I have only gathered more appreciation of the unique and complex individual that I am, full of mysteries and foibles which are neither right nor wrong and we can each do no better for ourselves than to come to realise that.

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