Last time I was in here, I wrote a gushing blog about going back to cycling after all these years. With typical gung-ho demeanour, I had picked up where I left off long before fibromyalgia (FM), myalgic encephalomyelitis /  chronic fatigue syndrome (ME / CFS) and chronic pain (CP) and managed a ten mile circuit…yes ten miles on the second outing, followed (the day after I wrote about it) by another three miles or so involving a short but intense incline. I was flying high…in both my optimism and mood…and I even felt like I was walking taller and stronger.

At the end of that week, we were going on holiday for a week, to a location that is a four hour’s drive away. What have I taught myself over the years if its not to err on the side of caution in the week(s) before going on holiday since the last thing I want is a health crash when I’m there? Of course, I checked in with myself during and after each of these bike rides and the consensus was that I felt better than fine…and yet, with all the beauty of hindsight, I see how I ignored my own well-tested advice.

It was on the Friday that we were due to travel that I got caught in a rain shower packing the car. I should add, I had been doing a certain amount of furniture shifting and cleaning in the previous weeks too, with a bee in my bonnet to change the layout of the house around and declutter our space. Yes, I tried to use a vacuum cleaner (not very successfully or without pain but I gave it my best shot). Its probably also notable that I did a week’s worth of daily lap swimming for the first time in years, just over a month ago, when I had access to a chlorine-less pool. Oh, and I’ve recently instigated some social activities, after a very long break from such things, including organising a meet-up group and a long-weekend hosting another couple in a shared Airbnb, though I invariably find such things totally exhausting. These are all notable physical activities in the life of someone with FM thus ones that should be approached one at a time, with caution and restraint but, here’s the thing…I was doing my darnedest to pretend I was “normal” and no longer had FM since I was weary of the very sound of those words.

No, this was going to be my summer of being “normal” and in my happy place, as I had set out very early on in the year; being my first, since before the responsibilities of parenthood, where I could spend hours and creative hours alone all July and August, just like did when I was a teenager; so, the perfect opportunity to reboot my joy of life and thus my health. It was like conjuring up that carefree feeling of the summer school holidays all over again; I even found myself playing nostalgic music from some of those most memorable of happy times, decades ago, allowing the silken-honey feeling of long days without care to infuse into me as though the last forty years hadn’t happened. Perhaps, if those feelings embedded deeply enough, I could quantumly heal myself to a place where the body sloughed off all its memories of burden and pain and became brand new again.

I was also reading Dr Joe Dispenza’s book Becoming Supernatural and following his meditations daily. Day upon day, these seemed to be making me walk taller, feel more vital and like I was capable of anything so was there any wonder I felt ready to launch.

But the thing about launching is to get the run-up just right…and I had galloped at this cycling escapade, perhaps, a little too eagerly, the consequences of which waited just around the corner of that long drive to our holiday in the hills. One much-too-soft mattress in our rental plus a disturbed and stressful night later (food for another blog) and I was already in trouble, using yoga to try and get my limbs to work and iron out my crooked spine every morning before tackling much reduced outings and struggling with just so many hills right outside the door; even our garden was on a sharp tilt.

By the Wednesday of our week,  a stride too far over a large boulder on an attempted walk to a waterfall caused all my hovering issues to snap into acute pain. I could hardly get up or down from a chair or the bed, climb stairs, dress or lower myself onto the loo. By the time we got home, via another four hour’s drive, I was even worse, continuing to intensify for the next few days until I was grabbing furniture to move myself around. Even though I am more mobile, a week later, I’m left with considerable pain radiating around my lower back and hips, intense nerve pains shooting down my legs, unable to so much as cough or sneeze without wincing and with much aggravated arthritic pains in wrists, knees, feet and fingers from all the extra pushing and levering to navigate around without lower back strength. My summer of cycling has been put on hold for the foreseeable future and I am left struggling to do the tasks that would normally fill my summer days, even sitting at a computer for very long or using my aching and stiff hands for all the distractionary creative tasks I’ve tried to line up.

Worst thing of all, a whole array of FM symptoms are knocking on my door, “out of season” (since I normally experience these most in mid winter), such as brain fog, bone-deep burning pain, nerve spasms and connective tissue that feels brittle and fibrous rather than stretchy and resilient, and all this has (perhaps unsurprisingly) impacted my mood, turning these summer days into a slog.

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So, what was all that about? I was excited, I held a vision, I really saw myself being the way I wanted to be, as an active person again with the wind blowing in my hair…and, for a brief moment, I did that very thing, coming off that bike feeling invigorated and just so good about it all. Then the rebound, the snap back, the crashing disappointment and what feels like a rebuke for even trying had happened and I am left in disarray. I’m full of summer energy and have no where to release it so my foot keeps obsessively tapping, my head is working overtime and this is all so frustrating I struggle to put it into words just as much as I do to get off the sofa so my blogging urge has been tied in a knot for days. It’s like being a caged animal….roaring to be free…whilst being in such significant pain you only want to curl up. For now, I KNOW I have to rest…though I don’t want to at all, I’m so sick of resting…with every energy depleted, tattered and torn part of me.

Looking around for clues, I found an interesting article, discussion and poll amongst people with FM and MS on Cort Johnson’s website, Health Rising (always such a useful resource) on this very topic of “does exercise help or make worse” in these cases. Intense pain that feels like “rigor mortis sets in”, even after the most beneficial and pleasant of exercises, is talked about, along with descriptions such as “it really feels toxic and myofascial – not at all like the burn I used to get prior to ME/CFS” (as one guy describes after doing a short walk). I can so relate to these descriptions; it is like your muscles set in concrete after every effort and this pain is like nothing I ever experienced from exercise before the days of FM.

The official line, amongst doctors and professionals is, of course, that exercise is always beneficial and, often, the guidelines on how much are quite “ambitious” for those with FM pain, because of this assumption but different rules seem to apply to a body with FM. Of course, keeping mobile is oh-so important, as I have been the staunch advocate of in all my posts about the importance of gentle daily yoga, of walking and not sitting for too long, of doing chores and little tasks at regular intervals to keep the body moving. Note the prominence of “little and often” and “gently” in these activities…

Yet there’s a cut off point when the opposite becomes true with FM; where exercise harms more than it benefits. I have sensed this invisible wall time and time again and am far from the only one to attempt to describe it. When you take the temperature of the long discussion on Health Rising, the consensus seems to be that doing most aerobic exercises makes the pain “tremendously worse”. To quote Cort Johnson himself, and I would concur, “exercise has been VERY helpful with my FM, AND exercise made my pain and other symptoms worse!” (italics mine).

Another member of the Health Rising forum says:

“staying active (gently) does make sense if you have a lot of stiffness and pain, but I’ve learned that some illnesses are just not logical (at least not until we discover the underlying mechanism)”.

Herein lies the problem with FM; it’s a mystery and, in many cases, a paradox since it doesn’t behave as you would expect it to. There is always the sense of something underlying its mechanism that will only reveal once you stop looking for it in the obvious, traditional, places and it will often “do” the very opposite of what you expect of it; the contrarian of all pathologies.

Another trend highlighted by the Health Forum article is that health researchers and doctors seem obsessed with suggesting exercise as an approach for FM (almost as though they are out of other ideas…), even though we could really use their attention being applied to understanding the condition better and coming up with new innovate approaches. This trend is so dogmatic that its very easy to feel like you are failing your own recovery process if you don’t take this exercise approach seriously, “doing something” significant every day. Yet, ironically, research findings don’t support this as a primary approach at all (however many assumptions doctors and people who know us may make about what we “should” be doing to get more mobile, as though our health problems would simply evaporate with more exercise). I’ve read far too many anecdotes of people exercising diligently only to embed themselves more deeply in pain and limitation, to the point they can now barely manage mild or moderate exercise anymore. Just so many minute studies have taken place about exercise and FM that meta-reports have also been compiled of these many studies and the results are less than compelling, yet their conclusions are often overstated. Quote Cort Johnson:

“The medical community seems almost driven to overstate any positive findings. The meta-review referred to earlier found minimal effects of exercise on pain and fatigue and depression but note its conclusion “aerobic exercise reduces pain, fatigue and depressed mood, and improves HRQOL and physical fitness, at post treatment” and think what a busy doctor who might take from that.

There’s nothing inaccurate about this statement – it’s just incomplete. Exercise does reduce pain, fatigue, etc. but while the effects are significant they are also small. ” (Have doctors gone too far on exercise for fibromyalgia? – Cort Johnson, Health Rising.)

And certainly not the holy grail of approaches that it is made out to be! So where does that leave us? Rock and hard place springs to mind.

The thing is, I didn’t take out my bike again because I felt I had to. I craved that feeling or normalcy, of doing what other people do to stay fit and optimum in the coming years (an ingrained cultural-tribal impulse, to be sure) and yes, part of me was labouring under the self-criticism that I am a couch potato by comparison. Yet I really WANTED to go back to doing some of the things I used to do, in fact this felt quite crucial to my recovery and also to dispel some of the dark pessimism gathering around the feeling I am “only getting older”, with new aches and pains joining in post-menopause, which had me dreading a limited or even physically handicapped later life and also the prospect of piling on weight. I thought that by diving into the kind of exercise that brings genuine enjoyment, I could waylay these effects through the power of my mind.

The problem seems to be, though we tend to think of “the mind” as another term for brain, our mind is located equally in the tissues and organs of our body. You could say, its a collaboration or meeting ground for both head and body at once; and that body may still hold onto trauma and old-defunct patterns of behaviour long after you have mentally released them from your conscious focus…as is a well-documented trait.  In other words, your body is thinking different thoughts to the ones you have so carefully selected and invested in. The trick is to disengage these thoughts…which is not to suppress them but to go beyond them, to where they hold no sway…beyond the tissue that is caught up in old trauma and patterns.

No surprise, then, that one of the people in the HR forum says that hypnosis was by far the most helpful thing they pursued, over exercise, which is pretty-much the same thing as I just described since it bypasses the over-analytical mind. The most powerful method I know of is to “go quantum” which is what I had been doing using Dr Joe’s mediations. This was having some tangibly positive effects on my mood and my body, in the sense of what I felt capable of and so on.

Yet, though I had been deep into doing that for a few weeks when I took out my bike, I probably wasn’t yet ready for a 10 mile ride…and this has always been my problem. The bull in a china shop approach does not do well inside a body held rigid with trauma so ancient you don’t even know where it all came from anymore; yet the body grips onto it, with white knuckles gleaming, using it to punch you right back in the face if you trigger it. Take such a body too far and it will rebound harder than any exercise you pushed it through…such as that hill or the extra half hour in the Nia class you were enjoying so much (Nia dance was another activity I threw myself into, a few years ago, only to find it made me much worse after a couple of months). The last few years are littered with new exercise regimes I had taken up with great enthusiasm, only to find I couldn’t last a whole class or had to give up after a few weeks due to greatly exacerbated pain.

The time it takes a FM body to recover is one of the biggest issues. When exercising, a huge amount of lactic acid can be released into our muscles and tissues which, though a typical athlete may recover within half an hour, we seem to be capable of releasing as much as a marathon runner with very little provocation and can find ourselves still  reeling from the effects of that days or even weeks later. So, then, repeat the exercise during that time and, suddenly, you have a snowballing effect as acidic, inflamed muscle and fascia attempts to accommodate your instructions and there you have it; the flare up of all flare ups.

Lactic acid and “knowing your threshold” is key.

“Lactate in small amounts is not bad – it actually reduces muscle fatigue – but the presence of high levels of lactate (lactic acid) signal that the anaerobic energy production process – which produces toxic metabolites that cause pain and fatigue – is in full bore.” (Cort Johnson – Lactate – Is it Everywhere in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)?)

He goes on:

“The lactate question ends up not being a question about lactate per se, but about whether widespread problems with anaerobic energy production are found in the brains, muscles and/or guts of FM and ME/CFS patients.  Multiple studies in both diseases suggest that they may. High lactate or similar problems have been found in multiple areas in patients with ME/CFS and in the muscles of FM patients”. (Cort Johnson – Lactate – is it Everywhere in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)?)

Dr Sarah Myhill talks about the secondary as well as the primary effects of this high lactate in people with FM:

“lactic acid…is good at breaking down the collagen matrix which holds cells together. That is to say, the lactic acid may cause microscopic muscle tears, which would present as local areas of soreness and would trigger a process of healing and repair by the immune system. There would also be excessive release of free radicals as the immune system repairs. This may well cause further muscle damage in people with poor antioxidant system. This is a disease amplifying process. Some sufferers find B12 helpful, possibly because it is acting as a scavenger of free radicals.” (Fibromyalgia – implications and possible causes – Dr Sarah Myhill.)

This is why my first impulse was to tackle this episode with increased antioxidant sources in my diet  and to pay better attention to supplements such as B12. The thing is, I knew all this before I took out my bike and did way too much physical exercise in a week; its not new information to me (and I have become quite the lay expert in its mechanisms, from years of personal experience) but I wanted to believe it wasn’t so anymore…I was, quite simply, tired of feeling so limited thus I ignored it, diving straight in. So what’s another approach?

Quote another member in the discussion “We need to look at our physiques, in the same way that athletes look at “aerobic threshold”. It is now decades-old knowledge, that focusing on aerobic training lifts the aerobic threshold; that is, the athlete is capable of a higher intensity of exertion “aerobically”, without the body going into anaerobic condition and then needing to recover, clear out lactate and so on”. For someone with FM, that threshold is significantly lower plus the ability to keep-on generating lactate, even after the exercise has finished, yes even when we are “just sitting there doing nothing” has been shown to be exceptionally high, so throw in more exercise of any stress and you can set a chronic situation in motion before you know it. Yes, even if you enjoy the exercise at the time you are doing it (as so many people in the forum mention and was certainly the case for me). Dr Sarah Myhill writes:

“muscles like being worked – it is essential for good blood supply and this contraction-relaxation cycle is also essential to move out and excrete toxins (such as lactic acid), which inevitably build up in muscles when they are being used. The problem for people with fatigue syndromes is that they do not have sufficient energy to exercise their muscles and therefore bring an adequate blood supply to their muscles and this alone causes muscle problems. This is compounded in severe CFS, where cardiac output is poor, because of mitochondrial failure in heart muscle! For example, if there is too much build up of toxins in muscle, the reflex response of that muscle is to go into spasm. If that muscle goes into spasm and remains in spasm (i.e. a cramp), then the circulation is further impaired and there is a sudden and quick build up of toxic metabolites, which causes more pain and spasm. This is exactly what happens in horses with azoturia (hence its other name ‘tying up’). There is so much muscle spasm and pain that the horse is literally unable to move and there is a huge amount of tissue damage going on. Obviously, humans do not push themselves to the extremes that horses do and so we do not see this same acute clinical picture, but I suspect the underlying biochemistry is the same. (Dr Sarah Myhill – Fibromyalgia – possible causes and implications for treatment.)

Blindly ignoring this annoying “present” reality to pursue the exercise is quite different to envisioning a time when you won’t be subjected to it and this is where quantum healing comes in. In such a case, you don’t ignore the mind but bypass it by taking it to a softer place where it tunes into a different set of possibilities, which has everything to do with how the manifestation of either a quantum particle or wave depends on the expectations of the bystander (look this up if you’re not familiar with it as I refer to it a lot; its the very basis of quantum physics). On a regular basis, when allowed to become that bystander with the option to choose a completely different outcome, the body can learn entirely new tricks, or perhaps remember them from a time before trauma and then extrapolate them forwards into your future life…like regaining your younger body. I would hypothesise, the longer you have been working on your quantum methods to bypass the mind and reinstruct the body (and you will only really grasp what I am saying here if you read Dr Joe’s book), the higher that aerobic threshold can be raised….but it takes time and patience, not a gung-ho approach to getting back on the bike of life.

This I have just learned; and though I am chastened by it, I am not sorry for the experience (assuming I will be recovered soon) since it had a lot to teach me. It is in the equal partnership of both left and right hemispherical approaches, as ever, that our best outcomes lie waiting for us. When we regularly utilise the soft, fluid capacity to return the body to the wave of potential it has access to in every moment (rather than always being caught up in the awareness of all the rigid cells and tissue that seems to be so fundamentally “broken” or “misfiring”) we lay the foundations for different outcomes, going forwards…since we each hold the power to create brand new outcomes just as soon as we remember this. If my days must include much more rest, for the time being, then I can spend a portion of them doing this and know I am putting my very best foot forward with my recovery. I also, gently, walk my dog and I still do daily yoga for a few minutes as its such a gift for mobility and pain relief. At some point, I would like to get back on my bike, though I intend to do so with considerably less intensity and far more focus upon the joy of doing it…in small doses!

So to meet this balanced process half way, yes, find something you enjoy doing so it doesn’t overtly feel like exercise, but do it in small doses, not how you used to do it years ago or in a “pushy” way that is the mindset of a different you. Shocking the body though the introduction of too much too soon can have a profoundly counter-positive effect, even if you are doing the underlying quantum work to create new attitudes; as though a fundamental covenant or trust is broken between two halves of you, and so the trauma-trigger effect is set in motion once again, almost as though your body feels it has been betrayed by your actions (in a sense, it has). Maintaining a state of absolute trust within the whole of the body field (that’s both visible and non-visible aspects, both particle and wave) is essential to healing.

Understanding this is, I suspect, the very key to the door of our healing since we have already come a very long way. Ours are no longer the bodies that tear only to get stronger, where “no pain means no gain” or where pushing long and hard through thresholds leads to super-powers and greater accolades; because all of those are the entrained attitudes of a bygone era (not the future in which you will thrive by meeting exercise joyfully and holistically in the middle territory between particle and wave). We no longer seek to bully or conquer the subtle mechanisms of our physicality but to know them better and then collaborate with them, to new and beautiful effect…and so there is very much to learn from all of this, both within and without the body in ways that can beneficially spiral out into the whole of life.

Resources and related

Have doctors gone too far on exercise for fibromyalgia? – Cort Johnson’s Health Rising article and discussion thread

Lactate – Is it Everywhere in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)? – Cort Johnson

Fibromyalgia – possible causes and implications for treatment – Dr Sarah Myhill (recommended article for better understanding of glycolysis, the very inefficient anaerobic production of energy (not requiring oxygen, but with a large build up of lactic acid) often implicated in FM.

Becoming Supernatural – recommended book by Dr Joe Dispenza

Recommended related posts by Helen White

Mrs White in the study with the candlestick – background to my injury with a deeper level of discussion around “what emotional and circumstantial triggers underly such episodes of chronic pain”

Rigor mortis – going further into the physical causation of lactic acid overdose in fibromyalgia