Pain is something I never really thought about before I got ME/CFS. It was something that happened only at specific times, like bashing my elbow or falling off my bike or my pony as a child. It had an identifiable cause and effect (I bang my elbow is the cause, with an effect of pain where I banged it) and was real in that it was related to some specific visible damage to my body, and acute, in that it hurt, then it healed and decreased accordingly. In short, basic over the counter pain killers worked.
Then from around 2005 onwards I was assailed by different forms of pain. The first being random pains that either had a specific origin say my leg or arm, but no apparent cause (rather like those mystery bruises we all get sometimes, they're there but we don't remember walking into anything.)
Then, rather more bizarrely, the second being something that wasn't quite pain, but I didn't (and still don't) have the words to describe. A something that, in fact, could only reliably be noticed and described by its absence. A sort of 'miasma' that was more and more frequently present, that had no cause or effect, that I really only noticed when it wasn't there. I would wake up feeling all light and healthy then a few seconds later a carapace of unwellness would descend on my body and weigh me down for the rest of the day. Or someone would comment how much I was smiling and I would realise it was because the mystery unwellness that had no identifiable source wasn't there today.
It didn't feel like pain in that there wasn't an 'ouch' in a specific or non-specific place. It was more the other things you feel when you have pain - concentrating is more hard, you feel tired, unwell, worn out, slowed down, uncomfortable. In desperation, I took basic pain killers in the mornings, every morning, and it helped. It masked that feeling of being mired in an unseen, unfelt 'miasma' all day. The very odd thing was that I didn't need to take more painkillers throughout the day, the basic morning dose kept me miasma free all day. Which frankly has to be bunkum in scientific terms because painkillers just don't last that long! But, that's my experience, it is what it is. For a long time I did wonder if I was making it up, though I had no idea why I would.
Later on, as my ME/CFS has worsened and became more severely moderate and fully severe, and basic painkillers just didn't work, again I wondered if the pain was real, or just in my head. Because mostly, as my activities decreased, I was getting the sort of pain one would get after a foolish attempt to get fit fast by taking 3 zumba classes in a week on top of a stonking hangover, without actually having done much at all.
To be honest, it all got rather bewildering. When I mentioned the disconnect I noticed between what I was doing and the pain I was experiencing in 2007 to a psychologist on the PACE Trial (to be fair he thought I was there as a roundup on the CBT treatment I'd had and I thought I was there for a medical appointment, so we were doomed from the start!) the only advice I was given was to take fewer painkillers - as by this stage I was taking the max dosage of paracetamol daily. Nothing like being abandoned when you need help! Needless to say I was rather frustrated and cross.
So, in that context, of being in pain that shouldn't exist, is hard to describe and not knowing how to fix it: the subject of pain has been much in my mind of late years! Why it happens, how to cope with the effects it has, and how to make it stop!!!
- PAIN IS USEFULAm I kidding? No. I'm not.
As you may or may not know, I have a faith, a mix of protestant christian Anglican and Baptist. I would hope it shows in a good way. Apologies if it doesn't, it's a fallen world and whilst my best is good enough for me, I do realise it might not be for others.
Part of being perpetually ill is the 'why me? why does it happen to nice people? why does it happen at all?' series of questions one asks the wider cosmos. My faith, in theory, would help me with this, but when one is staring at an abyss, it's hard to see the wood for the trees (to mix a few metaphors). Yes my faith gives me 'jam tomorrow'. On an eternal timescale, this life and its difficulties, is tiny, not even the blink of an eye. My faith gives me the promise of a pain free, happy eternity. I just have to wait this 'blink' out and then all will be fine.
But still. Illness? Pain? when there's not any obvious damage? Give me a break God - it's wonky! Fix it please!
I have a book by an American christian guy called Philip Yancey called 'Where is God when it hurts?' I don't know that it would be a good read for a committed atheist, you probably wouldn't like it, though the factual details (about how pain works in the human body) he gives to illustrate his thoughts on pain are interesting. For those with a faith, even a failing or past one, it might be helpful.
This is what he says about pain being useful... (my emphasis in bold)
Pain is not God's great goof. The sensation of pain is the gift that nobody wants. More than anything, pain should be viewed as a communication network. [...] a remarkable network of pain sensors stands guard duty with the singular purpose of keeping me from injury.
I do not say that all pain is good. Sometimes it flares up and makes life miserable. For someone with crippling arthritis or terminal cancer, pain dominates so much that any relief, especially in a painless world, would seem like heaven itself. But for the majority of us, the pain network performs a daily protective service. It is effectively designed for surviving life on this sometimes hostile planet.
In Dr Brand's words, "The one legitimate complaint you can make about pain is that it cannot be switched off. It can rage out of control, as with a terminal cancer patient, though its warning has been heard and there is no more than can be done to treat the cause of the pain. But as a physician I'm sure that less than one per cent of pain is in a category that we might call out of control. Ninety-nine percent of all the pains that people suffer are short-term pains: correctable situations that call for medication, rest and a change in a person's lifestyle."
Admittedly the surprising idea of the "gift of pain" does not answer many of the problems connected with suffering. But it is a beginning point of a realistic perspective on suffering. Too often the emotional trauma of intense pain blinds us to its inherent value.
When I break an arm and swallow bottles of aspirin to dull the ache, gratitude for pais is not the first thought that comes to mind. Yet at that very moment, pain is alerting my body to the danger, mobilizing anti-infection defenses around the wound, and forcing me to refrain from activities that may compound the injury. Pain demands the attention that is crucial to my recovery.
From Part 1 Why is there such a thing as Pain? 2. The Gift Nobody Wants by Philip Yancy 'Where is God when it hurts' published by Zondervan
Pain is a gift?
When I first read the initial chapters of 'Where is God when it hurts?' I was truly shocked. This idea that pain is a 'gift', a survival strategy I should be grateful for, was so very very alien to me. It was NOT how I thought of pain at all. I thought of pain as an incredibly unwelcome intruder that got in the way of my life.
In the edition I own, he talks of people with leprosy. As leprosy progresses, sufferers lose the sensation of pain, they do not realise when damage is being done to their bodies. And as a result they lose physical parts of themselves: fingers, toes, noses, ears etc. He described how in, I think, India, poverty stricken leprosy sufferers would time and again come to the clinic with damage they had no recollection of causing. Eventually, part of the cause was seen to be nocturnal attacks by rodents, and each sufferer was given a cat, as rodent control, which significantly reduced the problems those sufferers had with damage to their extremities. As it says above - 'a change in a person's lifestyle' - is not always what one would expect! 'doing things differently' in action!
Pain has an emotional element?
Also, the idea of pain being an 'emotional trauma' was alien to me. Quite apart from me being something of a lifelong 'emotional cripple', disliking and distrusting strong emotions: I think with current western medicine, particularly in the light of the, at times, hugely acrimonious contention that ME/CFS is a 'mental' issue causing physical symptoms (which formed the base of the PACE Trial), we have a natural desire to divorce mind and body in any case of illness. However, I feel that this is particularly true of ME/CFS sufferers who have to battle to get help and to 'prove' they are ill with symptoms that need addressing physically, not merely with counselling and 'positive thinking'.
The NHS is not geared towards holistic medicine, to considering the effects of the physical on the mental and vice versa. Physical and mental medicine are firmly separate disciplines. When one has an illness that doesn't conveniently fit into a conventional diagnosis, and when there is no treatment, then there's problems getting help on the NHS (or even privately). One's predominant symptoms are either categorised as physical or mental and off you are sent down the conveyor belt that is built to work out what's wrong, fix you and send you home. Sometimes you are sent down both the physical and mental conveyor belts, but not at the same time and there's rarely any crossover of medical discipline to deal with the 'whole'.
In addition, with a condition like ME/CFS one has to fight so hard to be recognised as ill in the first place, and with the mental discipline conveyor belt being apparently full of professionals hell bent on proving their own pet theories about ME/CFS rather than actually addressing one's actual needs to continue living, it's entirely natural, and to be brutal, life preserving to reject any notion that the illness involves mental issues at all. I myself, whether with gynaecological or ME/CFS issues have had great trouble convincing medics that yes I may be depressed, but the depression is a natural after effect of my physical difficulties and not the other way around.
- PAIN IS ALL IN YOUR HEADAgain, am I kidding? No. I am not.
For starters, let's go back to Philip Yancey and his 'Where is God when it hurts'. He talks about 'referred pain' where say, one eats an icecream too fast. There are no pain receptors in the stomach, there couldn't be, the actions of the stomach would be so strong and debilitate us permanently if there were with so much pain we couldn't move. So instead, the body 'lends' pain receptors from elsewhere, for example, with an icecream headache, to the bridge of the nose.
So, my understanding is, that with actual pain, stubbing a toe, or with referred pain, an icecream headache, these are actual real chemicals sparking away, sending messages to the brain that there's an issue. And yet at the same time, the message the brain gets is that there is a problem at a particular place in the body, and it warns our consciousness it's time to stop whatever we're up to because there's a potential for damage. In that sense, the pain is in our heads.
I have a friend who is a GP. About 5 years ago I told her about the pain my brain told me I had, which I sort of could locate on my body, for which painkillers worked. But also there was this pain the brain told me I had, but I couldn't locate in a specific place and that there didn't seem to be any damage - it wasn't actual or referred pain. That painkillers often didn't touch.
I was worried that either I was making up this pain for some reason not known to me and I'd like to be able to stop, that it was all in my head. I was also worried that this pain was overwhelming me with it's sheer unstoppable grinding existence, constantly there in the background. Why I asked does this happen and what can I do about it?
Her response - all pain is in your head, and if your painkillers aren't working, try different ones. Because painkillers do different things.
As you may have gathered by now I am not remotely interested in medicine or illness. I want solutions on a plate. I don't want to have to learn about being ill, that's what doctors are for, to fix me without me having to know the detail in the same way I expect a TV to work without me knowing how, or others used to expect me to get their tax bill right without them having to know the whys and wherefores.
So, her response came as something of a surprise. Because yes, I suppose all pain is in my head in a physical 'sparking of chemicals' way, because that's the central processing point, and painkillers stop the signals getting there, to my head. And, really? they do different things?
It wasn't until a couple of years later for example, that I was told that you can take ibuprofen and paracetamol together. Who knew! And what was more exciting was, together, for a while, that combination kept the 'miasma' under control when one or the other by themselves didn't.
So what about pain that I feel that has no source? or can't physically be there?
For a year or so when I first became severe, the inside of my bones hurt. Which can't be possible, there's no pain receptors there and it couldn't be referred pain, because the whole point of referred pain is it happens where there are receptors for areas where there aren't. Therefore, if the inside of my bones actually hurt, I'd be feeling it somewhere else. As it turned out, a prescription for Vitamin D appears (though I have no actual proof) to have mostly got rid of that particular symptom, that and stabilising generally. But it is an instance of pain that can't possibly physically be true in the sense of actually happening where my brain is telling me it is.
However, it is known that when people lose limbs, amputees, they feel pain in them even though there's no limb left. So where is that pain happening? As an ignorant layman I'd say it's in their heads. Because there's nowhere else it can be happening, the limb no longer is there. That's not to say that such sensations are a mental issue, again, I feel they're physical, to do with 'chemicals sparking' though what sets them off I couldn't say.
Just before Christmas 2015 my neck went wonky and I prevailed upon the local osteopath to make housecalls. This 'phantom pain' was something we discussed. Pain that happens in my head, but can't be true in a physical biological sense, because it's not possible.
What I understood him to say (which may not be what he actually said), was, that in his experience, people do experience pain where there's no damage (or it can't be happening as above), and it appears to be caused by the pain network sending confused signals, which need to be interruped. This can be by painkillers, antidepressants, etc or physical manipulation or intervention of the body to help the pain network recognise genuine movement and sensation from 'phantom' sensation.
This leads me to my third and final thought on pain:
- PAIN AND MOOD FEED OFF EACH OTHERAgain, am I kidding? No. I'm not.
This idea was a surprise from a GP at the current practice I'm registered with. For a while in 2013 I had turned up wailing about being exhausted, my PACE Trial CBT techniques weren't working and I was frightened I was getting worse and didn't know how to deal with it.
I didn't get very far until I (a) took my dad with me who was able to be articulate about how the way I was was unusual and uncharacteristic (yes I know, not my finest hour in my mid 40s but I was desperate) and (b) I wrote out a chart of things I would normally do that I was now failing at. Basic things like personal care and feeding myself and climbing stairs (on my bum by this stage).
The GP listened, looked and energetically swivelled his chair to face us exclaiming 'You can't live like this, staring into an abyss! Your symptoms need to be controlled!' Hurrah a breakthrough! I would get help! Except I was so traumatised by the whole experience, I was too busy crying to notice, fortunately dad was listening....
Anyway. What he said next I was doubtful about - pain and mood feed of each other so I needed painkillers AND antidepressants. He had recently read a paper on the subject so prescribed basic co-codamol and a low dose of Sertraline. And warned me it would take up to 6 weeks to kick in.
Two days later, it was working. With some slightly odd side effects - the hyper realistic dreams caused some difficulties with my family, until we worked out that they were dreams and I hadn't actually already eaten my dinner/ asked for shopping to be done and so on. I still find it disconnecting to wake up feeling a very strong negative emotion from a dream, that I'm not actually experiencing now I'm awake. It was a rather fast and startling transformation. The pain wasn't completely under control, but it wasn't so debilitating any more that I couldn't see around it. Over the next few years, the pain has stabilised such that it only really kicks in if I do too much.
It was a salutory lesson to me, I was frightened of taking anti-depressants, of my illness being labelled as purely mental. And the idea of taking more meds, of combining them to achieve a greater result than the sum of the parts taking meds for mind and for body together that felt strange. And that my mood (mental) affected the pain (physical), that was alien to me, even though I would readily and had in the past argued that the physical pain affected my mood. Looking back it seems rather illogical that I would argue an effect in one direction, and deny it in the opposite, but I suspect that comes down to the unfortunate experiences I have had dealing with 'mental health' professionals.
Again, for me, with hindsight, it comes down to 'doing things differently'. Taking a punt and being willing to try ideas that are outlandish or in some way might undermine a cherished way of thinking (ME/CFS is not a psychological issue therefore no psychological technique can help) even if that way of thinking has been adopted to 'protect' myself from the danger of my illness being exacerbated.
Finally though, what has really helped with my pain is being in a position to STOP and live my life differently, in a way that minimises the pain. I've already written about 'giving things up', and in some ways, being suddenly that ill, being forced to give up things, is a lot easier than choosing to do it.
I find it interesting that in that excerpt from Philip Yancey's book above, he quotes Dr Brand as saying experiencing pain in 99% of cases is a 'call for medication, rest and a change in a person's lifestyle'. We are all very ready to take meds when the pain gets too much, to rest for what we consider a reasonable amount of time (which may not actually be enough), but to change our lifestyles permanently? In our culture, the fallibility of our bodies is something to be denied, worked through, medicated, ignored. Countless adverts claim 'take this and you can carry on regardless'. And yet, with this illness ME/CFS, that cultural norm is fatal to our continued wellbeing, sense of ourselves and possibly even our existence.