Those of us in the UK already realise that, whilst we had a significant late summer heatwave last week, its well-and-truly over this week, thus we are back into the usual wet and much cooler autumn weather. It’s the time of year, similar to spring, where sudden changes in the weather are par for the course and can be one of the most challenging for anyone living with chronic pain.

My body has responded true to type and gone off into a full-blown Fibro episode this week but also into what feels like a significant oxalate “dump”. In fact, mostly at 4am in the morning, my stomach feels so acid and painful its as though I had wandered way off my oxalate-avoiding diet (I haven’t…well not that significantly, in spite of a few minor lapses when eating out) but then there’s a pattern here and its not all to do with what I have been eating or necessarily caused by me “doing something wrong”. So here it is (my hypothesis), which is a more developed continuation of a theme I explored in an earlier post recently:

When there is sudden weather change (TBH I could almost remove the word weather from that part of the sentence…) my hyper mobility-challenged body generally goes into a state of laxity (which translates into severe rigidity…and for a succinct explanation why laxity = rigidity and pain, see this excellent article on the topic). When all my body tissues become lax, there is a sudden and intense release…including the release of oxalates stored in those body tissues. This overwhelms my entire system and my poor liver does its utmost to process this oxalate burden out of the body, doing the bulk of its work at around 4am when rest and recovery is meant to be taking place (its opportunity, normally, to “clean house”). What else can it do but dump this surplus of oxalates back into the digestive system and voila, I wake up feeling as though I have had an almond and spinach smoothy for my bedtime drink.

If any of that oxalates surplus recycles back into the blood stream, which is very likely, then a few days of increased pain and bizarre symptoms – known as oxalate dumping – is very likely. Mine, last night, included a wholesale mast cell like reaction that felt as though my skin was on fire plus I have had bedtime interstitial cystitis, slow gut motility and severe IBS all week. I’ve listed many of the possible effects of oxalates in previous blog posts, including the fact that they are pro-inflammatory, and for a full run down of a safe detox process, I refer you to Sally Norton’s books “Toxic Superfoods”. If laxity could potentially cause leaky gut, as is sometimes proposed, then the likelihood of oxalates leaking back into the blood stream via the digestive track, which covers five times the area of the muscles and connective tissues, is presumably increased when hypermobility is present and I have certainly found at least one paper advising that those with hEDS should be evaluated for oxalates as a matter of course. They certainly present with significant gastrointestinal issues!

Higher oxalates at large, of course, feeds back into joint pain and all the other ails of Fibromyalgia, so more issues with knees and wrists as well as increased back, neck and leg pain etc are likely to happen to me when this occurs, so often coinciding with colder or damper weather, making this the more likely culprit of all those much increased aches and pains, the wooden gait etc., that arise when the autumn weather kicks in (but also just as likely when there are transitions to sudden heat, humidity or damp). The buzz word here is “change” and all of this is so obviously, very deeply, entangled with my neurodiversity that they can’t be separated, at all. My neurodiversity is the reason why I have all of these issues, of this I am absolutely convinced, and to look at my symptoms as mechanical without taking into account the neurological and (related) emotional is to see only half a picture.

The well-known link between hypermobility issues and autism remains pretty wooly as long as the medical approach is to consider that laxity is a continuous thing, a diagnosis that is linear and unwavering…when really, in my experience and that of countless other people I have read about on forums, in blogs etc, the behaviour of hypermobile conditions often isn’t continuous at all but ebbs and flows with a sort of bellows effect. It flares-up and retracts a lot more than you might expect a strictly mechanical issue to do; much more like you would expect from fibromyalgia or, dare I say it, TMS (more on that below). One minute you feel painfully tight, rigid, like every part of you has been set in concrete and the next you are fluid, over-bendy and stretchy in various parts of your anatomy, for instance you might find yourself sitting curled up like a pretzel when normally you lie there like a piece of wood, you may even enjoy the feeling of release and extra expressiveness in your body (its great for dancing!) and yet you also realise that you aren’t that strong or reliable when you are like this and mustn’t overdo it. What initiates the changes, in my case, often isn’t something going on inside of me but the external environment, to which I am responding…weather and all that, also changes of circumstance, sudden stress and so on, can also have a similar effect.

In the light of the tendency towards high-sensitivity and hypervigilance that is so often hardwired into the average (if there is such a thing) neurodiverse person, none of this seems all that surprising. I know that my body speaks to me in actions, not words, when it is daunted or overwhelmed by a change. It doesn’t say to me “hey, it just got cold”, it shows me this by changing the way it feels and behaves. It demonstrates to me that something just altered “out there” by changing the whole experience for me “in here”, and there seems to be no way for me to stay, reliably, autonomous or aloof from that external change, try as I might. Exactly how much say I have over this, often inconvenient, situation is something I continue to experiment with but the thing I have lately come to appreciate is that it is not so much of a glitch or a symptom of my body being faulty in some way as it is a form of communication…which my neurodiverse body uses to warn me and prepare me for different circumstances coming up. The real problems arise when I don’t take pause to hear it out and respond appropriately, which is quite different to how a neurotypical person might need to respond (I always have to take changes a lot more seriously, cautiously and with adequate preparation and forethought). Maybe then it would “demonstrate” less forcefully and we could come to some sort of arrangement.

While I continue to detox from a lifetime of oxalate hoarding, this continues to be more of a problem. I can tell I am getting somewhere (two thirds of a year’s worth of spinach, beetroot, almond and chocolate avoidance…some of my favourite things…has to count for something) as I am enjoying some radical improvements overall. However, the fact I can still “dump” oxalates with such vehemence when conditions change tells me there is still work to do and I can’t afford to get too relaxed about hidden ingredients on menus when I eat out, or to smuggle more mashed potatoes into my diet just because we are back into comfort-eating root veggie season and I like them so much!

Its not just oxalates that get released, I notice, when my body hits a lax phase because (as you can imagine) anything that is held in storage in body tissues risks getting back into the “water supply” like nasty toxins leaked from a vault when the structure that was holding them became suddenly unreliable and compromised. This metaphor always brings to mind the way they dump nuclear waste under the ocean in containers that are meant to be utterly infallible yet who can ever guarantee such a thing and what if they’re not…

So that leakage includes emotions that are deeply buried into tissues all over the body, which all of us have but some of us more than others, depending on the kind of experiences we have had, how overwhelmed we have been by them and how well equipped we were to deal with those emotions at the time they occurred (all of the above puts those of us who are neurodiverse at higher risk of hoarding old emotions in body tissue, as I have written about before). If you doubt this assertion consider the work of Candice Pert, for which she should have received a Nobel prize (and almost did), which uncovered the fact that every single cell in the human body has an emotion receptor built into it, communicated with using peptides. As she writes about in the attached article, “Dr. John Upledger, a notable somatic practitioner, author and healer, called such wounds “somato-emotional cysts”…likened to a primitive body defense response in which the injury, and the emotions therein encoded, are walled off from the rest of the body, and never truly resolve”. My thought is, what if oxalates are being use as a means to strengthen the “wall”?

By this stage of our self-enquiry, we are probably all extremely familiar with concept of “doing the work” to release all those walled-off emotions in order to heal, a process that should always be taken gradually and with great care, but what if pockets of emotional pain were to suddenly release every time you had a spontaneous episode of laxity in your body tissues? Wouldn’t this feel like you were having some sort of emotional bomb go off for no apparent reason, triggered by who knows what? How does this segue with Seasonal Affective Disorder (SAD) and seasonal flare-ups of pain? Remember my other hypothesis, from earlier posts, that a tendency to hoard oxalates is a wholly self-protective impulse (as oxalate hoarding is in the plant world, where certain plants accumulate oxalate to prevent predators and harsh weather from harming them). Imagine the catch-22 that would occur if a propensity to release emotion bombs every time you have a lax-tissue episode causes your body to collect even more oxalates from diet, or even self-generate them (yes, the human body creates its own oxalate stash, a process known as endogenous synthesis) in an attempt to lock those emotions “safely” away again. I’m sure you see the picture I am painting here…

Being this: just imagine you are born neurodiverse, highly sensitive, very highly aware and yes, given time, you develop hypervigilance as life teaches you to be become so as a direct result of the fact you didn’t exactly inherit the easy route and you have had to learn to look out for yourself. Over time, you gather quite the collection of harsh experiences and the kind of unpleasant emotions that frequently overwhelm you, on top of all the sensory overwhelm that is your daily diet, and so with nowhere else to put them all you stash them…inside your own cells.

However, your hypervigilance to changes of any kind, however subtle, equips you with a propensity to change form, to literally transform you structural body in some potent, if often quite subtle, probably defensive, very likely primitive and highly instinctive ways to become suddenly lax in some of your connective tissues and joints, perhaps even your stomach lining or blood vessels, your nerve fibres and so on. Without knowing why this is, my own sense is that it is something akin to the way your instincts inform your knees or even your entire body to go extra soft as self-protection when you are landing on a hard surface, having fallen from a high-up window for instance, or the way a hedgehog is able to adapt its body shape to pull everything together around its spine so that it can curl up into a tight ball-shape when threatened. A link between increased anxiety and hypermobility is already known about in humans and has now been found in dogs “which may suggest a very ancient evolutionary link which could be a universal trait in all mammals” (see article).

Whatever it is, this “sudden laxity” switch undermines all your efforts to squirrel emotions away in tight little pockets of convenience inside pretty much every part of your body (by the time you have lived a few decades of life, I expect much of the body gets used up…). A bizarre hybrid of emotions and oxalates come flooding out of storage in an episode of laxity and there you have it, a flare-up of sudden pain, an unexplained oxalate dump and probably some unruly emotions or even old trauma come to the surface of your mind, seemingly out of nowhere, to boot!

It’s a lot to handle but less so when you start to feel like you can see why or how its happening. For me, it leads me straight back to doing the TMS (tension myositis syndrome) work, see all my other posts on this topic, which is about letting those emotions surface, as messy as they like, but also moving the body more not less (as movement aids the process of release and keeps you out of a mindset of “illness”), changing the belief that you are broken or ill (neurodiversity isnt a flaw, its just different to what most people experience) and doing your best to come to understand those differences so that get to you learn your own operating system better. Its often the comparison with other people that makes you feel most broken but, really, you are just the casualty of not having realised the unique way your body operates and the equally unique vulnerabilities that it has…because no one ever told you.

Knowing that you have this propensity to experience physical effects when external circumstances change pre-arms you before the problems happen; so that you get to try and keep the body’s immediate environment fairly consistent in temperature etc, for instance, and learn not to make too many demands of yourself when these transition phases occur because you now appreciate that you are already coping with much more than the eye can see!

This isn’t something you have to explain to others so much as self-advocate for by making allowances for yourself when you can tell that you are being triggered. It’s enough to believe in yourself and to take all the necessary steps to adapt your own life to work better with what you are already coping with, so that you don’t add to the load.

Understanding how oxalates are a built-in vulnerability and using this information to make dietary changes (the “normal” diet that suits other people doesn’t necessarily suit you!) can make a huge difference. Not investing in old emotions that surface but handling them with respect and compassion, preferably by journaling them out as per the TMS method (not using them to fuel knee-jerk behaviours that overcomplicate your life even more) can be a massive source of release and long-term recovery. Going back to Candace Pert, she puts it beautifully when she writes: “By simply acknowledging emotions, they are expressed. In being expressed, emotions can be released, even old emotions stored in body memory.  Allowing my emotions to surface into awareness and to be able to name my emotions is the beginning of emotional exploration.  I am moving forward, trying to find my position within the family, within the community, and in life.” (Dr. Candace Pert: “Molecules of Emotion: The Science Behind Mind-Body Medicine”). After all, you get to have a huge clear-out and reboot every time one of these release phases happens and the headway you make each time can be made permanent, just so long as you don’t stoke-up any of the old pain that surfaces but just let it have its say, letting “the chips fall where they may” (Pert), and then letting it go.

None of this is to say that experiencing a flare-up of pain (either physical or emotional) is easy to handle…it really isn’t…but it can certainly help to understand all the ways that its really not your fault, just another iteration of the various differences in your “wiring” compared to the next person. Its also something you can get into a far better relationship with, once you start to appreciate just what a rough ride you have had living in the dark until now…followed by feeling extremely grateful that at least you now know yourself and the rhythms of your health a whole lot better than before and are prepared to curate the best possible life to suit what you most need.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any symptoms that concern you.