Who turned up the volume?

Being in a fibromyaglia flare-up always reminds me of the description of when Gulliver arrives in Brobdingnag (the second ‘land’ of his travels, after Lilliput) where he is, relatively speaking, the size of a matchbox and his captors are eleven times his size. Due to his proportionally small size in this world, Gulliver finds the smell, sight and sound or ordinary things abrasive, repulsive or plain ‘too much’ to bear. If this or the following list of symptoms sound familiar, you might want to read on because there’s light at the end of the tunnel…

When I woke this morning, I knew I was in that place because the sound of my husband munching on his breakfast muesli (sorry husband) sounded like a heifer tugging on grass an inch from my ear; the barest daylight coming in around the edge of the shutters stung my eyes like acid rain and I had to ask that all deodorant and perfume be applied well away from where I was because I knew it would ‘hurt’. Exaggerated smell sensations can be one of the oddest things, causing actual physical pain in the body – I feel it first on my upper lip, which stings and tightens, like it wants to curl-up (well, where do you think we get the grimace from exactly?) and then the sensation spreads into something painful in every cell as the nose signal reaches my brain. When I’m in this place, all but the softest spoken words can feel like fingernails scratching down a blackboard and excitable energies around me (good or bad) are a complete no-no. The vice-like head pain and jaw lock of Trigemenial neuralgia (almost certainly associated with the extreme muscle response to smell referred to above and directly instrumental in those familiar migraine-type headaches), bladder hypersensitivity and tender stomach lining very often switch on at these times, along with generalised body pain like a profound flu-ache. The first impulse, on recognising the signs, is to want to pull my head back under the duvet and hide from every sensory trigger until all these exaggerated sensations have passed.

Not so these days, however – and certainly not when its Nia day. As I’ve written about before, I’m finding that dance is something that helps me work through this kind of flare-up and, for the record, so is art;  in fact, so is anything that gets the two halves of my brain to forget about themselves and collaborate together on something enjoyable and distracting.

JumpWhat these flare-ups feel like are a very acute version of self-consciousness (literally, becoming conscious of every minutest sensation, with the ‘volume’ turned up) and, when I dance, I really notice how one side of me is far more self-conscious than the other; that is, one limb so much more expressive and fluid, able to carry out the quick changeovers and more rapid manoeuvres while the other starts out hesitant and even clumsy (just like when you try and write your name with the ‘wrong’ hand). By the end of an hour in the dancing zone, both sides of my body are working together so much more smoothly and efficientley that the transformation is quite incredible and, guess what, pain is significantly reduced, my nerves less triggered…and its the same after an hour or two of painting. In fact, do anything that is both creative/playful and active (using you hands or feet, some spacial awareness etc.) – in other words, lose yourself in a hobby – and watch how the intensity of your pain switches down a few notches!

So, I’ve learned, avoiding these kinds of activity, because I’m having a flare-up, is counter productive and the very last thing I am likely to do these days – if I can drive a car, or hold a paint brush, I get on with them and just trust they will help. Having just landed back home from my Nia session, I can freshly report that all my incredibly intense pain levels of this morning have stabilised and (apart from feeling core-tired) I am feeling…so…much…better that I would hardly have believed such a turn-around was possible a year ago.

Another thing that I am currently trialling for this aspect of fibromyalgia is a high dose of vitamin B1 (Thiamine). According to a very small fibromyalgia study carried out in Italy, a high-dose of thiamine resulted in decreased pain in those who took part and this mantle was picked up by fibromyalgia-blogger Karen Lee Richards, who tried it for herself (her article on this is here). The Italian study gave their patients between 600 – 1,500 msg of thiamine per day, dependent on body weight (the current recommended dosage is between 1-2 mgs going up to  300mgs in the case of severe deficiency). Karen levelled out at about 1500mgs, reporting significant differences in her energy levels, and I am currently taking 300mg, about to go up to 500mg (am taking the increased stages very gradually) so we shall see. One particular plus of thiamine supplementation that pricks up my ears is the suggestion that it can reduce the pain of peripheral neuropathy and the intense trigeminal neuralgia (one of the most intense, sometimes excruciating, sensations that I periodically experience) as referred to above.

So what’s this got to do with the ‘feeling too much’ aspect that undlerlies the pain of fibromyaglia? Here is why I find the early case-studies of Thiamine supplementation so exciting. Communication between neurons in the body relies on chemicals called neurotransmitters, which create and control signals. FMS and ME/CFS have been associated with irregular levels of several neurotransmitters, including Glutamate, which is involved in the process of stimulating the brain or, in other words, it fires the brain up.

When glutamate becomes too active in the body, it can  become what’s called an “excitotoxin,” meaning that it appears to excite neurons until they become seriously over-stimulated, damaged or even die. Studies are starting to suggest that this is often the case in someone with fibromyalgia, ME and CFS where unusually high levels of glutamate can be present in a part of the brain called the insula or insular cortex. Other studies have suggested the likelihood of an excitotoxic event being the result of thiamine deficiency. From what I can gather (see extract), thiamine plays an important role in regulating glutomate levels but, when deficient, glutamate floods the cells of the brain and can trigger an excitotoxic event.

The natural buffer to overloaded glutamate is GABA (gamma-aminobutyric acid), another neurotransmitter that can be negatively affected by fibromyalgia (read this article for more on how to detect if a shortfall of this is an issue for you). One of the natural ways to boost this is to take l-theanine, which I have been self-dosing for a month now, with very positive effects in terms of enhancing how calm yet clear-headed I have been feeling, with good quality sleep. Green tea is an excellent source of it (I drink this regularly as its my favourite drink) and the benefits of calming l-theanine seem to vastly outweigh  the proportionally low levels of stimulating caffeine this contains – more on all that here.

As ever, I share all of this from layperson’s or health-detective’s point of view; I am not a scientist or a medical professional, just someone working their way through the very personal territory of having fibromyalgia, seeking clues to my own well-being. If any of this rings bells to you or intrigues you as it did me, I recommend you click on the links and research around the topic for yourself then consult a doctor to be on the safe side.


How I Found My Long-Lost Energy – Karen Lee Richards

Nia Perfect – how the dance modality Nia has helped my own symptom management and recovery

Windows of Insight – Fibromyalgia and the left-right brain hemisphere connection

Disclaimer: This blog pro­vides personal, anecdotal information and dis­cus­sion about med­i­cine, health and related sub­jects. The words and other con­tent pro­vided in this blog, and in any linked mate­ri­als, are not intended and should not be con­strued as med­ical advice or recommendation. If the reader has a med­ical con­cern or questions relating to the suitability of treatments referred to, he or she should seek professional medical advice.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s