When I was younger (and my dad wasn’t an octogenarian with a penchant for falling in rivers) we used to head for the hills whenever it snowed: Glencoe, the Mamores, the Brecon Beacons, the Lake District, Ben Nevis, Skye. We have climbed a frozen waterfall, built a snow hole, abseiled down an icy gully, fallen into a frozen river (dad, not me), clambered off the Cuillin Ridge as 3 feet of snow fell in an hour, spent a day drinking whisky because we were on holiday so it seemed like a better idea than going climbing in a whiteout, and nearly got blown off a couple of peaks. But in recent years we’ve had a far more limited amount of snow action.
The last time I got my winter mountain gear out was to walk to work (just over 2 miles) during the Great Jersey Blizzard of 2013. Our house at the time was in a fairly exposed spot; although placed within a couple of hundred yards of seven different rural roads, we couldn’t get the car through the snow to reach any of them, and were effectively cut off (except on foot) for several days. On an island that advertises its beaches, large number of days of sunshine etc and which measures 9 miles by 5 that’s quite a feat. The last time my dad went on an adventure in the snow he got his car stuck in a snow drift. At least I made it to the office without having to phone for help.
I’ve never really felt the cold – unless I’ve been ill – and so I’ve never really had to get to grips with it. From a fairly young age I only registered that it was cold from the reactions of people around me (Everyone: it’s cold today isn’t it! Me: Yeah, sure, why not). As far as I can tell, my primary school created a rule that you could only play in the snow if you were wearing trousers, wellies and a parka specifically to prevent me from turning up in my t-shirt and shorts in the middle of winter. Our heating packed up during a particularly cold winter (my dad was working away from home at the time, mercifully for him) and I still remember the amusement factor of wiping ice off the inside of my bedroom window each morning. One December evening in the early 90s my neighbour and I went to a gig in Manchester, and I spent most of the journey leaning out of the window to scrape ice off the windscreen in freezing fog. Then there’s the time I almost got stuck in my parents’ chest freezer……..
Cold as Ice
This is a fairly long winded way to introduce the fact that – for one week only – Jersey has just experienced winter. We had temperatures of -2C during the day, an actual ground frost, 2-3cms of snow and a winter halo around the moon. Usually it just rains a lot in winter, so this was pretty exciting stuff. The wise women were out in force around Gorey, hiding posies in hedge rows and releasing geese, and the feral chickens took up temporary residence in our garden to enjoy some much needed shelter from the icy breeze. It ain’t exactly Texas, but this is pretty rare stuff on an island which still commemorates the year that the fountain in the Central Market froze.
And I don’t think I’ve ever felt the cold like this before. I’ve written about the impact of stormy weather, damp weather and changes in air pressure on my fibromyalgia symptoms, but one brief cold snap arrived and I thought my bones were going to shatter! It felt as though every joint, every sinew froze, my muscles were shouting at me whenever I moved, stretched, stayed still, breathed etc. When I sneezed or coughed my chest and shoulder blades were riven with pain for several minutes afterwards. I met a friend for a socially distanced trip to the Amaizin Adventure Park, and I had been back home for more than four hours before my fingers regained any meaningful sensation.
I felt utterly crippled by the weather, and the most troubling aspect was that I just couldn’t get my head around it. Generally my wife uses a winter duvet in summer and I keep my summer duvet over winter. I’ll open all the windows on a dry day in January to let the fresh air circulate whilst my wife straps hot water bottles all over her body. I go out in the garden in my pyjama shorts to see what the weather’s like whilst my wife puts a coat on to go into the kitchen. And yet here we were, with my wife handing me hot water bottles whilst I shivered under a duvet in my thickest fleecy coat and – mirabile dictu – long trousered pyjama bottoms! And socks! What the hell was wrong with me? Have I spent so much time in the South that I’ve gone soft? Am I doomed to spend every winter’s day complaining about the cold weather, as if drawing attention to it will magically make me warmer?
Senses Working Overtime
The simple answer is that I, like many others with Fibromyalgia and/or Chronic Fatigue Syndrome, experience Temperature Sensitivity. And frankly I’m not happy about it. This can present itself in various different and compelling ways: your fingers and toes may feel bitterly cold, but your head may feel like it’s burning up; you may sweat profusely when it is moderately warm, but not as much when it is really hot; your body may struggle to adjust to sudden temperature changes, leaving your body out of sync with the ambient temperature around you; you may struggle to cool down when you are hot and/or struggle to heat up when you are cold. Commonly, Temperature Sensitivity in Fibro patients can result in reduced tolerance thresholds to heat and cold, and reduced pain thresholds; in other words, we start to feel hot/cold before other people notice the temperature changing, and it starts to hurt sooner (and more acutely) than it ought to.
One common example would be sitting in a car on a sunny day. The driver is enjoying the warm sensation of the sun shining through the car window, making their arm pleasantly warm and tingly; you, the passenger, might feel as if the hairs on your arm are burning and your skin is about to blister. Conversely on a cold day you might feel absolutely fine, but then suddenly your fingers, toes and nose feel as if you’ve got frostbite, and your body appears to be telling you that your muscles and joints are freezing from the extremities inwards towards your very core (although, just to confuse matters, your trunk might feel positively glowing with warmth); it might take hours for those extremities to return to a normal level, finally free from the pain caused by cold, stiff joints and achy muscles.
She Blinded Me With Science
Research points in the direction of the Autonomic Nervous System (ANS) as potentially the key component here, and abnormalities in terms of how it operates in people who have Fibromyalgia, Chronic Fatigue, and who experience Temperature Sensitivity. The ANS is part of the Peripheral Nervous System, which regulates those important tasks that we do unconsciously: breathing, pumping blood around the body, keeping our heart and lungs operating, modulating body temperature, keeping our eyeballs hydrated, digesting food, that sort of thing. It receives environmental information, plus information from various parts of the body, and uses this information to regulate a whole raft of functions, including those mentioned above.
The ANS uses two types of neurotransmitters – acetylcholine and noradrenaline – which operate as part of the sympathetic system (which stimulates the body) and the parasympathetic system (which maintains “business as usual” by inhibiting stimulators and keeping the body ticking over as efficiently as possible). This is something of an over-simplification – there are some very good articles out there so I won’t delve any deeper – but essentially they are the yin and yang of your body’s unconscious operating system, finely tuned and balanced to keep your body operating as normal, or to stimulate your body in response to environmental changes and threats. Think of Fight, Flight or Freeze response versus post-prandial lazing in a chair on a Sunday afternoon and you’ve just about captured the essence of the Sympathetic and Parasympathetic Systems.
A brief list of functions controlled by the ANS includes:
- heart rate
- blood pressure
- rate of breathing
- digestion
- urination and defecation
- body temperature
- production of bodily fluids
- electrolyte balance
- sexual response and
- emotional responses.
So your Autonomic Nervous System is pretty important really, assuming you want to stay a) alive b) functional and c) healthy.
Get The Balance Right
All of this is fine until there is an imbalance or abnormality in terms of how the ANS and its constituent neurotransmitters operate. This can result in disautonomia, significant causal factors of which can include Chronic Fatigue Syndrome and Trauma, as well as autoimmune disease – all three of which can be major contributory factors in the case history of fibromyalgia patients. The symptoms include:
- fatigue and inertia
- chronic pain
- dizziness and light-headedness
- gastrointestinal problems
- profuse sweating (or lack of)
- hypotension
- difficulties with going to the toilet (too much, not enough, not being able to empty the bladder fully)
- numbness and tingling
- anxiety and
- severe depression.
In other words, there are a lot of crossovers between Fibromyalgia, Chronic Fatigue Syndrome and Disautonomic conditions.
Which does not automatically mean that if you have one, you will probably have all three. But if all of this is causing bells to ring in your head – and you have a good doctor who is familiar with your case history – then it might be worth exploring further. As with CFS and Fibromyalgia, treatments for disautonomia/disautonomic conditions often focus on prioritising and managing the most debilitating symptoms, but there is a range of recommended medicine, activities and dietary approaches which could assist the patient in reducing the impact of disautonomia and working towards homeostasis (ie restoring the body’s equilibrium).
Bad Blood
Interestingly, recent studies reported in Pain Medicine Journal indicate that the nerves on our blood vessels monitor temperature as well as blood flow. This explains, for example, why our faces tend to look flushed when we are cold – the system’s response to cold is to send more blood to our faces, hands and feet to assist in regulating the body’s temperature. Early indications point to Fibromyalgia patients having more of these nerves in our faces, feet and hands (where special skin blood vessels called AV shunts control blood flow to manage temperature control). Which potentially overloads our brains with information about the body’s temperature, interfering with the pain inhibitors regulated by the Parasympathetic Nervous System.
This potentially provides an explanation as to why Fibromyalgia patients often experience a combination of poor blood circulation and Temperature Sensitivity: it may boil down to autonomic imbalance coupled with excess nerves in the blood cells situated near the hands, face and feet, resulting in the body having lower than normal pain inhibition responses to cold (or heat), and less effective temperature regulation. Hence the example above of freezing cold fingers and toes combined with a face sufficiently flushed that it feels like it’s burning. Worst case scenario is something like this: the temperature in your extremities is not being effectively regulated, the extra nerves in your hands, feet and face are desperately sending messages to your brain saying that everything’s cold and painful, and your Parasympathetic System is failing to convince your body that everything’s okay by inhibiting pain responses. And to top it all, autonomic imbalance means that you could have erectile disfunction, although sex is probably the last thing on your mind at this point.
Whilst this information does not as of yet provide us with any potential treatment for temperature sensitivity, it certainly points to ways that we can anticipate and manage the impact when the weather changes. So, for example, I almost always wear a hat outside, as well as gloves when it gets cold (unless my younger daughter “borrows” them) even if I don’t bother to put on a coat. I wear socks in bed (awful, awful sartorial abomination) whilst nestling under my summer duvet. It’s also why I wore my face mask every moment that I was outside during the Great Jersey Freeze of 2021. All 7 days of it.
The Mundane Adventures of Captain Fibro 