So a couple of weeks ago I promised to have a chat about pain and the nature of pain from my personal experience. So the first thing I’ve learned is: Pain isn’t real.

Now before you sent me off to the pits of hell and damnation, bear with me.

In my last blog, we chatted about how I’d had to work quite hard (supported by many wonderful people) to get an appointment with a Pain Management Clinic. To that point, I’d made so little progress in getting help to be able to actively manage my pain that I had become completely convinced that all my doctors and consultants thought I was a neurotic hypochondriac (and was starting to have doubts myself, if I’m honest).

I have come to understand that there are a huge number of medical practitioners (across many areas of speciality) whose thinking on pain is simply out of date. Happily, they are increasingly few in number. For many years, conditions such as fibromyalgia and chronic pain syndrome were simply dismissed as hypochondria and neurosis, or worse still, something approaching Munchausen’s syndrome (or at best, just someone looking for attention). Now however, thanks to the work of many expert rheumatologists and neurologists we know so much more.

For those of you who are struggling with pain, I urge you to google Lorimer Moseley. He has a variety of presentations on the subject of pain that I promise you, will open your eyes and you will learn so much. He is also very entertaining! There are lots of videos out there of him doing his stuff, but if you only have 15 minutes, I urge you to watch this one.

In the past, the common belief was that pain resided in the body’s tissues, which sent a message to the brain when something hurt. We now know that is not the case. But the correlation between body tissue and pain is nevertheless undeniable and constant. We know now – and this is the really important thing to understand – that pain exists to help us protect our body: Pain exists to make the brain do something to get out of pain.

Let’s just stop and think about that for a second. Pain only exists to tell us something is wrong. Pain is, and always will be, a construct of the brain. It’s not real.

When you think about it logically, of course that makes complete sense. How often when you have bashed your finger on something do you immediately grab it? Your instinct is to protect it and comfort it. We would not do that if we did not sense pain.

But here’s the rub (my Mother would be so proud of getting a Shakespeare reference in to this!) – as my headline infers – pain doesn’t actually exist. You can’t touch it, you can’t feel it, you can’t see it, you can’t draw it, you can’t measure it. Famously, the thing that most pain management patients hate being asked is to rate the pain level between 1 and 10. There is no point of genuine comparison – my 4/10 might be worse than your 8/10 because we all have different thresholds. But the reality is that asking that question is the only way the clinician can gauge how the patient is feeling – for exactly the reason that you can’t describe it, see it etc etc.

Except, of course, every person on this earth knows that pain exists. For many it is a source of misery that blights and dominates their lives. I’m one of them.

So how do you treat this thing that you can’t see, is difficult to describe, and is impossible to empirically measure? Well, once you have ruled out broken bones, appropriate illnesses, and other obvious sources of pain, you are left with simply trying to manage the symptoms.

So I need to be honest here – I have accepted that I will never be free from pain, and that sometimes that pain will be acute. Currently, it’s at its worst 2-3 days a week, is unpleasant for another 2-3 days of the week and is uncomfortable but manageable the other day or two of the week. I can’t get rid of the pain, but in time, I can learn to turn the volume down. Let me explain.

Many years ago, a dear friend of mine broke her arm in two places and dislocated her elbow falling from a horse. As an experienced practitioner of pain management through brain management, she was able to call an ambulance and remain conscious long enough to await the ambulance’s arrival and talk to the paramedic before eventually passing out from the pain.

There are countless stories of how people have used the power of the brain to “turn the volume down” on pain. It takes a lot of knowledge and a significant amount of hard work. That’s where I am now. I am a sponge for knowledge and an apprentice at work.

You may recall I was only diagnosed with CLL because I visited my GP complaining of non-specific neuralgia and fatigue. Since diagnosis until now (more than 5 years later), my haematology consultant insisted that the pain was not linked to my CLL. He now accepts that the pain may be related to the CLL as it may be active in my bone marrow. He only mentioned it when I brought up the fact that I was now being seen by a Pain Management Clinic.

So many of us have so much to learn about pain and the management of pain. Including some medical professionals.

Stay strong. Fight hard. Laugh lots.