I always thought I preferred, no longed for, silence…but then, that was during all the years when it wasn’t even an option on the plate. Where I lived was so noisy, often even in the night, that there was simply no choice but to put up with noise. It was never completely quiet there, well, not for longer than a golden few moments between flows of traffic going past (I would sometimes count out the seconds). I now look back and wonder whether it was more a case of disliking the lack of control over when it was quiet rather than wanting it to be quiet all the time.

Where we’ve lived for four months now is painfully quiet, in fact, since its been too cold to have the windows open there’s not a peep to be heard, apart from the rumble of the washing machine if we’re using it, or the boiler when it first switches on. No bird song, no traffic, no people noises, just the once-a-day postman in his near-silent electric van. It’s been a whole other extreme.

You would think that I would love it, be gobbling all this silence up, my nervous system in seventh heaven…but that’s not been the case at all. In fact, I’ve been forced to ask, is silence really “golden” after all?

Instead, I’ve noticed far more general tension in my body, in fact I even have a tendency to tense my main muscles when I’m meant to be completely relaxed, for no apparent reason but it seems to be quite involuntary when I am in a quiet place for too long, as though I am braced for something. I’ve noticed issues with shallow breathing, a habit of slowing breathing down, even long moments of holding my breath until the next tiny sounds startles me back into the habit of it again (its as though I need the sound to remind me to keep breathing…is this an autistic thing?) Likely related to this, I’ve noticed much worsened small fibre neuropathy that doesn’t match the temperature levels in this house since we are never that cold and I tend to wear layers in the house. Just so you know, small fibre neuropathy (unlike peripheral neuropathy which affects feet and hands) can affect many other parts of the body such as torso, hips, chest, legs, bladder (pain, over or under active), vulva (vulvodynia), face, ears (a possible cause of tinnitus), eyes (gritty, sore), heart rhythms etc and can be intensely painful, like burning, tingling, electric-shocks, pins and needles or like grit or glass-shards digging into flesh, wild temperature variations in different body parts and even numbness followed by excruciating pain when sensation suddenly comes back and, yes, is made worse by exposure to cold.  Its one of my worst types of pain and I’ve experienced it for years and years, worse for the last half-decade but never this bad!

However, I also can’t help wondering whether poor breathing and increased tension and rigidity are far bigger culprits of pain, in my case, perhaps in other people with a similar profile to me. A more obvious conclusion might be that I have fibromyalgia and hypermobility, both of which get worse in the winter months, resulting in increased muscle rigidity, reduced blood flow etc…and yet I can’t help thinking that there’s more to it this year, especially since symptoms are much worse on days when I am in this quiet place and the effect this quiet, quite noticeably, has on my body behaviours is also interesting. As alluded to above, when it is deadly quiet, I seem to grab onto the first thing I can focus on in the morning and hold fast, distracting myself furiously by hyperfocusing on it but, meanwhile, the dysautonomic disarray of my body only seems to get worse: I completely forget to move (in fact, its more like I turn to stone for hours, a sort of involuntary reaction, like an animal trying not to be noticed in its hiding place), my breath becomes shallow and pauses for quite a few seconds at a time and my blood pressure tanks…its all quite fascinating, now I notice it. 

So another related thought, though seeking out silence is advocated for lowering blood pressure if yours happens to be high, what if your blood pressure already tends to be too low, as is mine? When dysautonomia is already present, lowered blood pressure is only going to add to the effects and all the increased blood pooling episodes I am experiencing when I stand up at the moment is certainly pointing at this.

It was only when I started to google around the topic of what could have made these factors so much worse for me lately that it came upon me that anxiety and poor breathing could play such a big part in neuropathy. “Hyperventilation is very common when you have anxiety, and when you hyperventilate your blood vessels constrict which takes away blood flow from some parts of your body. Without blood flow, these areas start to tingle, burn, etc.” (Anxiety and Peripheral Neuropathy). I’m not obviously anxious right now, or no more than I was a few weeks ago, although life has certainly had its stressors lately, but does pernicious silence cause a kind of anxiety that I’m not even aware of, adding a whole other layer of stress on top? Also, holding yourself rigid will always constrict blood flow to those all-important peripheral areas so is only ever going to make neuropathy worse and, as I said, my rigidity seems to increase ten-fold when there’s absolute silence, like my nervous system goes into freeze-mode.

The thing is, I was (and always am) fine at the weekends when we get out of here and head off to places where there are people and noise; all the usual signs of life. Last weekend we were in Derbyshire and spent quite a lot of time in cosy pubs full of people and loud music, there was almost too much going on at times but then that’s just Christmas for you and yet I remember sitting there marvelling at how I was feeling just so at-home and contented somehow in this sea of overlapping human sounds. The feeling was convivial, the people at the next table were friendly and, though you could hardly hear yourself think, it was a good feeling to be in there. The rest of the time we were busy meeting with family and walking around crowded Christmas markets, it really was none-stop. What was really noticeable, all weekend, was that I wasn’t in any particular pain and had none of this horrible neuropathy at all, though it was quick to return by the time we had been back here for less than half a day.

So  I’m forced to ask, does my nervous system simply prefer to be around noise and signs of human life than left to languish in silence and aloneness? Its a topic I touched upon in some of my previous posts about the need to seek out positively stimulating places.

This, however, is still something of a surprise coming from someone who has long considered herself to be an introvert…and I am, or, more accurately I’m an extroverted introvert. The thing that determines whether you are an introvert or extrovert is whether you replenish your energy from being with other people or being alone and I certainly need to spend time alone to recharge myself. I love to be around people too and thoroughly enjoy striking up conversations with them when I’m in the mood, its just that I do need those guaranteed time-outs to recharge myself and reset my nervous system. I’m also highly sensitive, prone to over-stimulation if the triggers are all wrong but am generally OK when the source of stimulation is good, in fact, I seem to need it.

Perhaps it’s all because I grew up in a large family. My state of “normal” from a very early age was to be in the bosom of an extremely noisy, often chaotic, family home with everybody talking at once, doors slamming, people coming and going all the time. Even then, I told myself I longed to withdraw…but then my diaries more honestly remind me just how much I struggled when everyone dispersed after Christmas and I was suddenly left all alone once again in my quiet bedroom; that would spook me and I would feel really quite dismal for a while. It was a really hard transition for me once all my siblings left home permanently and I was left all alone with two retired grownups for the next ten years. In effect, I began my childhood as part of a big family and ended it as an only child and that really affected me, in ways that were both good (I got more positive attention from my mother and it allowed me to do more of what I wanted) but also other ways that were, I now notice, fairly detrimental and long-lasting because my nervous system was so confused by this complete change of environment. That transition phase, as it happened, was when I first started to have weird and wonderful “symptoms” affecting my nerves and muscles and which later became fibromyaglia. Looking back, I would use the television and music as my main forms of stimulation and as a way of keeping loneliness at bay and utterly hated to be in my room if it was silent. I think my parents must have been wired the same way as they always had to have the radio or TV on downstairs from the minute the day began!

So it’s a theory that came to me today; does silence actually trigger a state of anxiety for me and perhaps certain other people, maybe those who were used to being in crowds when they were growing up. So, perhaps even a lack of people around, generally, has this effect too. It would certainly seem like a prime culprit for just how much we’ve disliked living here in this oh-so isolated cottage, for all we thought it would be idyllic. We simply don’t see any signs of life here, even on our walks. The village is picture perfect, has all the little touches that makes you want to pull out your camera and yet there’s no one about enjoying any of it. We do most of our daily walks with no sign of human life at all except, perhaps a single car will drive past and I simply don’t like it; it spooks me!

More than not consciously liking it, I do believe my nervous system strongly dislikes it, something feels “off” about not seeing other people around. Instead of feeling better for having them, as I do when I walk around seeing other people out with their dogs, I know I tense up after my walks and I simply don’t get that same feeling of flushed-through tingles of wellbeing or happy endorphins flowing after my walk, I just sort-of throw myself back onto the sofa and tense up all the more afterwards, so much so I’ve been skipping some of my daily walks as they only seem to make me worse.  I hadn’t made the connection between the isolated village and my muscle behaviour and pain levels before but am now I’m really wondering.

The way I’ve reacted to living here has been one of the biggest clues this kind of life isn’t for us…and the fact that we really need a much more social village, just like the one we are moving to, where there are always people about in the cafes and shops, walking down the street or playing in the parks. It’s been a big part of our “best life” recalibration (as written about just yesterday) to realise that we both need people around us to be happy and healthy but now I seem to have spotted another reason…my nervous system really needs it too!

So it’s certainly an interesting topic…could a lack of noise, of people, of signs of human life actually contribute to pain, in some cases? Are we so wired to be together that when we are apart, our health actively worsens? A lot of studies have looked into the adverse effects of too much noise (see example) but what about the adverse effects of not enough? I’m struggling to find much on that, although it is known that there are adverse health effects from not being around other people for concerted lengths of time, something that was under a lot of discussion during the covid lockdown (by the way, could there be a link between the widespread social isolation that occurred at that time and the wave of POTs, a form of dysautonomia, and neuralgia that followed for so many of those who contracted the virus?). I can trace my worsened neuropathy to about the time my daughter flew the nest and the end of all those ways that my life had been connected to other people through the network of school, which was a year or so before covid though, ironically, I didn’t do so badly during the lockdown as she came to live at home again…it was in the phase right afterwards that symptoms became more severe, so coincidence?

Is this effect worse for people from bigger families? A study into the effects of raising children in bigger families compared to those raised alone concluded “According to the present study, living in a family with older siblings – who offer an opportunity for play, comfort and security – protects against developing internalizing and externalizing behavioural problems.” I’ve certainly craved spending much more time with my siblings since that time and now consider this to be an important factor in my psychological wellbeing, having the noticeable effect of calming my system down in a way that is hard to pinpoint; much more so than time spent with friends since we have much more in common (its one of the reasons we moved north, to reduce the distance between us). I also now freely admit that I love to be around people in general, even if I don’t know them, such as being in cafés or pubs etc. and I’m actively factoring this need into my future life, though it was something that was almost completely absent during the worst years of my health (another coincidence?).

Here’s another arbitrary thought; could this be related in some way to the trait of rejection sensitive dysphoria that is so strongly associated with neurodivergence (a lot of people with ADHD and autism report suffering from this)? I have always particularly struggled with receiving “the silent treatment” and even the merest perception that I am being ignored can trigger a cascade of pain in me that is as physiological as it is impossible to deny; it’s the worst kind of bullying. Here’s what I found in this article Is the Silent Treatment a Form of Abuse?:

“A 2012 study shows that the silent treatment stimulates the anterior cingulate cortex, which is the same area in the brain that registers pain. This means that people not only feel emotional pain when given the silent treatment but also a certain level of physical pain. This can lead to damaging physical side effects if someone is repeatedly ostracized by someone important to them. Physical responses such as weight changes, rising blood pressure, and sleep disturbance have all been found.”

I can well believe it; it was this sort of treatment that caused me far more distress, at school, than near-enough anything else and which still drives me nuts as an adult. Stemming from what has been found out about the adverse effects of ostrisizing people, as this article says, “We can hypothesize that, similarly, loneliness is associated with the pain matrix.”  Prof. Steven Cole of UCLCA, part of a team that found a block of genes involved in inflammation that was not suppressed but in fact greatly activated by loneliness, hypothesised that “The best theory is that this pattern of altered immunology is a kind of defensive reaction mounted by your body if it thinks you are going to be wounded in the near-future”.

So, given this, how does this doubly affect those of us on the spectrum, whose lives have been a long-running saga of feeling left out and not understood or received as we are; how does this, potentially, feed into chronic pain conditions? I still hold out hopes of finding “my people” in my new life but what if I don’t; yet, at least I will be around more people on a daily basis than here and I do seem to really need that; without it, my pain seems to go through the roof. So is neuropathy potentially connected to autism? “Neuropathic pain is uncommon in most autism patients” according to Dr. Hsieh in Neurology Today. The study considers gene or nutritional defects, even the possible effects of autism meds (note: I have never taken any!) but what about the socio-psychological factors, do these play a part? In my spectrumy family, we all have Reynaud’s (where fingers/toes or whole hands/feet turn blue-white at the slightest hint of cold) but it seems to have been those of us that have been the most socially isolated (including my father and grandmother, when they were alive) that have suffered with it the worst; so do psychological factors make a bad thing here even worse? I’ve certainly found people on Wrong Planet talking about a possible link between Reynaud’s and their neurodivergence.

By the way, I wonder, is it a coincidence that people tend to develop neuropathy later in life, at a time when their lives often become more socially limited or even cut-off, particularly as is the case for elderly people, in which cohort the direct cause of their pain cannot always be isolated. Taking this thought as a cue, I found this paper which concludes “The study raises important questions concerning the relationship between neuropathic pain, its physical and emotional consequences and social outcomes. The results highlight the importance of viewing neuropathic pain as a social phenomenon in which treatment and management should pay closer attention to the interpersonal and social needs and quality of life outcomes for the spouse or partner and family as well as the patient”. In other words, increased neuropathic pain becomes associated with reduced social contact and lowered quality of life plus increased focus on pain, in a vicious cycle, as highlighted by this article on how neuropathic pain can be associated with social isolation but is this putting the cart before the horse; what if the lack of social contact itself has fed into the pain in the first place, hence why improvements can be expected when better means of social connectivity is focused upon as a solution. As this article shared by a pain clinic summarises “This lack of normal routines and daily human connection triggers an increased risk of stress, depression, and anxiety. These stressors make pain worse because stress affects the peripheral nervous system by causing more muscle tensing and pain.”

I am certainly noticing how pain levels are causing me to do less during the weeks when I am most symptomatic, in fact, interruption of life feels unavoidable when most severe (another isolating effect I have suddenly thought of is that the intense pain of neuropathy even makes it more difficult for me to connect using zoom calls or by phone because of increased sensitivity to EMFs). Conversely, when I make myself busy at the weekends come what may (because that’s what I like to do these days, to get out of here, so I make my arrangements and stick to them, however I feel), my symptoms seems to disappear much more into the background so I enjoy demonstrable improvements in mobility because I am not wincing in pain all the time. This is very real, not psychosomatic but, I do appreciate, it may well have a deeper psychological core to do with how much my nervous system struggles to be quiet and alone five days a week, causing tension, poor breathing, increased inflammation and so on, as I am exploring here.

Following my theory, that the silence is really (physically) getting to me here, and is even perhaps at the root of my terrible neuropathy right now, I’ve determined to play music today…as, for some reason, I often forget to do so here in this quiet house. In the old house, there was no choice but to push headphones into ears as soon as I woke, to block out the cacophony of traffic noise. Here, the silence seems to beguile me into forgetfulness and, many hours later, I often realise I forgot to listen to some playlist I was about to put on hours earlier or, if I switch music off for some reason, I forget to switch it back on again because nothing prompts me to do so. The result is that I mostly tend to sit here writing or whatever in stoney silence and, by the end of it, Im rigid with pain…far more pain than I experience on days when I play music in my ears as I work. In a sense, I’m guessing that listening to music acts as a fill-in for people contact since I feel so deeply connected to the music and musicians and, I guess, this make me feel part of something (although this is just part of the complex love-affair I have with music…but it does feel like a big part). In short, listening to music makes me feel much less lonely and always has. 

So already this morning, I’m noticing that my shallow breathing has vastly improved, transforming into deeper, longer breaths without me having to constantly prompt it along. My legs have lost a couple of points of pain, I’m feeling more fluid in my sitting posture, I’m even feeling warmer. I haven’t thought about my neuropathy apart from writing about it, now, for over two hours whereas it had me grimaced in pain and was impossible to ignore when I first got up. A side observation is that when music is on, I waggle and tap my foot, move my legs, tap my fingers and sway my head nearly all the time, which has to be really helping my blood flow (a big downer in this house is that there hasn’t been the room to continue my daily dance practice for months).

A related point to all this is that I am the sort of person that gets severe hot flushes whenever I suddenly relax (eg. sit down, sip wine, turn off my laptop for the day, finish eating, receive good news) so the fact I am feeling more heat flushing through me now I am back to listening to music again tells me just how tense I normally am and just how much that tension affects my temperature, my blood flow and no doubt the function of my nerves when I am not relaxed, which is so much of the time that I’m hyperfocused upon doing something as a distraction from the lack of noise or feelings of connection that my system seems to crave with a vengeance. I really NEED that lighthearted conversation with someone passing by or the change in the song or the normal but varied sounds of everyday life going on past my window or the chat with the postman to jolt me from this rigid state I get into…and to allow all my body systems to flow normally again…but, when this is absent, my whole system seems to crash!

So, an interesting hypothesis and one I thought I would share, just in case it resonates.