Tuesday, 27 March 2012

The Pain in the brain really drives you insane... Living your life in a game of chess...

It's certainly an interesting time in the treatment of pain. Body in Mind has a link to an article in The Australian (a national broadsheet newspaper) titled: “The champion cyclist, her mysterious excruciating pain and her unconventional road to recovery” written by Christine Jackman (The Australian, 24 March 2012. Click on the link for full article)  I also found a piece in the dutch language magazine Elsevier (No 11, 17 march 2012, pg62:) “Why pain isn't needed” (Waarom pijn niet nodig is); talking about the increase of multidisciplinary pain-clinics in treating pain as a condition and management techniques to lessen the impact it has on peoples' lives.

The newspaper article linked in Body in Mind is very well written; well worth reading. It is not often where I come across any article about pain that also mentiones CRPS. Usually it is overlooked in lieu of the more common lower back pain. Perhaps it is just too strange to mention! It gives a great insight into the realities of Pain, and a look at what it means to live with chronic pain, even as an elite athlete. There is too much in the article to go into in detail, however some points were extremely valuable and brought a smile to my face in the knowledge that once again, I am not alone. 

I am incredibly lucky that I've always been on the right path, even if I get a little lost sometimes. The incredible work of these pain specialists, the way they view Pain as a disease in itself; and their revolutionary treatment is really the reason I am able to do so much in my life. I am very grateful to them. 

Amanda Spratt is a cyclist with the Australian Institute of Sport, competing internationally. She rides with her gnawing demon alongside; just as much as I carry my frenemy Pain. It was wonderful to read her story, her words echoed mine in many aspects, though hers more succinct:
"But nothing out there will hurt me as much as I used to feel. The difference now is, the whole experience has made me much smarter. Knowing what I do now has made me more confident. And that makes me stronger mentally – and more competitive”

It certainly does. I will never again, suffer again like I did during those early years. Nor will I ever fall as far down, as I did 3 years ago. There are ups and downs, sure. But I have done it – I know so much more now! Living in a prison of pain gives you many hours of unwanted self-reflection. Sometimes you become so controlled by the pain that it's all you can do to stop going mad. Gives you something else to focus on rather than the pain that just won't stop. Sometimes you have to be self-absorbed in order to fight it.

So it is said that if you know your enemies and know yourself, you can win a hundred battles without a single loss.”  The Art of War - Sun Tzu

Written somewhere around 400 BCE (late Spring and Autumn/Warring States period). Perhaps the oldest and most famous works on military strategies used still today, in business and military tactics. Being half-Chinese, it is something close to my heart. It is a part of my history. Ancient China was filled with battles both lost and won. But the civilisation itself, never died. China is still China, it survived. And so did these wonderful wise words.

You get to know your Pain when you have it all the time. But it is always in conflict; like the constant bickering over borders and kingdoms. There are some battles you will win and some that you will inevitably lose. Like a game of chess, you must accept that you are going to lose some pieces; you need to accept that things will hurt. It's what you do with it that matters. How you change tactics when the old isn't working. You have to be flexible, able to adapt when a strategy isn't working.

You have to look Pain straight in the eye, without fear and without backing down. You cannot be afraid of the Pain. It's hurting, so much sometimes that you feel you cannot take it anymore. But you cannot be scared of it. In chronic pain, the pain doesn't usually indicate further damage, it just “expects” to feel pain. If you're not afraid of something, it has no power over you. When you really know something, you also learn its weaknesses. You learn how to “manipulate” it to get what you want.

I too, am competitive. I won't back down every time to my pain. I understand that Pain is a part of my life, the travel-buddy-from-hell! But I also know how to trick it; how to manipulate it, while at the same time accepting that it may (or may not) throw a screaming tantrum fit when it realises it's been had. I'm not afraid of what it will throw at me, because I know how it works. It can hurt all it wants, but sometimes that is just the price of what you want to gain – freedom. A hundred battles without a single loss.

Professor Lorimer Moseley is one of the leaders in the neurology of pain. He was awarded in 2008 the outstanding mid-career clinical scientist working in a pain-related field by the International Association for the Study of Pain (

It was back in 2002 or 2003; when I first heard about Professor Moseley's work. It was very much thanks to Dr Coralie Wales, of Chronic Pain Australia; who taught us the reasons we were feeling such excruciating pain all the time. The very concept of treating pain as a condition of its own, was revolutionary. She works very hard in the field of chronic pain, and in getting it recognised as a condition in itself. 

The knowledge that Pain was not something that could be aspirated out with a needle, poked with any instruments or operated away. These actions quite often made things worse in the drastic and sometimes brutal attempts to treat or cure chronic pain. I've asked my doctor to cut my arm off, but even if he did (he always reminded me that it wouldn't work), the pain would remain because it is NOT in my arm. It is in my brain, in my central nervous system, and in my neurological wiring that sends out signals that are not there - something you cannot slice and dice away. This Pain works quite differently to the nociceptive, normal “danger alarm” pain.

Weird symptoms, feeling pain when there shouldn't be; my strange self-portraits, less sensation with contradictory higher sensitivity (allodyna: feeling pain from something that was non-noxious ie: a gust of wind, clothes). Hot skin gave way to Cold. I needed to have something on my arm that gave pressure, so that it wouldn't hurt so much if someone touched me. A previous accident or experience of pain can set your brain up, to make it more “sensitive” to pain, even just the “idea” of what hurt. [TEDxAdelaide: Lorimer Moseley - Why things hurt].

Brains are strange in this way. Sometimes they play tricks on us. But it goes both ways – you can trick your brain back!

But the reality is, that it may always be there. You cannot change it; you might get better one day, you might not. You can't sit around and hope to be saved from it – you have to save yourself from yourself. Some things might not work; some times you'll fall in a heap and cry. But you pick up again, reassemble the troops and fight another day. You cannot let the enemy conquer any more of your life!

Most of the time I try not to focus on it, it certainly doesn't help me. The fact that CRPS is the worst you can get in the chronic pain scale, is not something I like to think about. I don't really care. If I think about it in that devastating way; if I let it in my head, I will lose myself to self-pity before I even begin.

What I do keep in my head; is the times when I was at my peak, both before and after the Pain. Photos are important; not to look at and feel sorry for the loss of the person you once were, but to see and remember how it felt to BE that person. You may not remember a life without the Pain, but you can remember that feeling of succeeding, or feelings of sheer joy and happiness. 

What is Pain, really, next to the extraordinary power of feeling on top of the world? Life is made up of mostly greys with bursts of black and white. It is in this melding of tones and using contrast that make the dramatic effects that we so love in a painting. It makes the image powerful and alive.

With the drawings I did and the floppy arm dancing, there was definitely something wrong in my brain “wiring”. Of course, dancing was also my saviour. I would stand in front of that mirror for many hours every day, willing my arm to move and look normal. An obsession. I didn't realise why, at the time. All I wanted was for no one to see my pain, I didn't want to think about it. I wanted the music to dance me and I wanted it to be perfect, nothing less. Those flowing arm movements were my physiotherapy and “brain” training. The improvements were excellent. I gained mobility; refined my proprioception somewhat. I appeared to dance as though I was a dominant left hander; not as someone who was in severe pain. And at times, I even believed it myself!

However, there are also many times when things were not so good. It was during one of those times when I had a consultation with Associate Professor Milton Cohen (Rheumatology, Department Head, St Vincent's Hospital, Sydney); who spoke in the article of the importance of Moseley's work. (He has also appeared on ABC Radio National Health Report 12.09.2011 and 06.10.2008 where he spoke about appropriate prescription of opioid medication in the treatment of non-cancer chronic pain; that it must be used in conjunction with goal setting and in a holistic framework of treatment and not as the sole method of pain relief/management)

I was lucky to get an appointment with Milton Cohen. He was such a lovely man; he listened patiently while I sat there in utter turmoil, crying into hundreds of snotty tissues that he never batted an eyelid at (I may have even put them on his desk – how embarrassing!!). My dearest Mother was right there next to me. She is a nurse who has years of experience dealing with doctors and specialists; she was impressed by his compassionate and gentle manner. With every suggestion he kindly made, it was rebuffed by a rude and somewhat tortured know-it-all in Pain; who knew all the things she should be doing because she's done them for years and they AREN'T WORKING!

I knew all the stuff, I followed it to the letter. I exceeded expectations and it still failed. I couldn't do it anymore, I couldn't keep failing. I was so desperate, I was suicidal. I had done 8 years of this terrible horrible pain and I just wanted to end it all. I hated the pain; I hated myself for being so weak as to be in pain. I hated the life and I felt in my heart that my loved ones would be better off without such a burden in their lives.

This pain specialist was one of the best there is; my last lifeline before I drowned. I wanted him to cure me; I begged him to fix me. I had been hopeless for so long, but there was a small part of me that wished that maybe, just maybe there was something we missed in the pursuit of being pain-free. Maybe there was an answer we hadn't considered yet.

Much of the appointment was a blur of blackness and despair. But I do remember when he looked into my eyes and said, quite sadly, that what I had would most likely be permanent. He also told me not to let any doctors operate, stick needles in, or anything like that; because it won't do anything. He made some suggestions, which I can't really recall now, as those words echoed in my head. Permanent. Forever. My last hope, gone.

While it was a very dark time; it was perhaps the turning point. What was obvious to everyone was the very thing I was trying to hide. There was no denying just how bad I was anymore. I had no choice, but to get treatment. I took some time off work, saw a psychologist to work on the depression (and a psychiatrist, the depression was serious). Much of the depression came from sleeping problems, the Pain interfering with my sleep. Nobody can function when they are chronically sleep deprived.

I started to listen to the doctors; actually taking my medication without skipping. I hated medication; the many medications that I went through. Pills that, for the most part, did nothing against the pain. For all those years I only took medication when I was at my very worst; believing myself “weak” for giving in and needing them. I had to change my outlook, and my expectations of what they were doing. The goal couldn't be an absence of pain, the goal had to be stability and getting my life back to "normal". 

I had some Bowen Therapy, which is a remedial therapy, working on restoring balance in the body by gentle manipulation of the fascia tissues (ABC TV Second Opinion: Bowen Therapy) which did correct my posture problems and had me walking much better than I was before. I had massage therapy, acupuncture... all useful things that are for managing and maintaining my condition.

Back in 2005, I was treated by Steve Lockhart of SLM Bodywork. He has treated Jeff Fenech, three times World Boxing Champion, among other world champion triathletes, Olympic finalists and record holders and many more professional athletes. These athletes would have had their careers cut short without his treatments. He is excellent, he taught me how to use his techniques in my own self-management. However he did tell me that what I have is notoriously difficult to treat, but he would do his best and we should get some results if I was able to tolerate the discomfort (many people with CRPS cannot tolerate any form of physical therapy, and therapists do not wish to cause more pain in their patients, so the immobility continues. It's a vicious cycle).

At times it was incredibly painful, but necessary to reduce the muscle and joint atrophy of my arm. It was during his treatments that I realised I could "block" the pain for short periods of time. I would put myself into a meditative state, a self-hypnosis if you will. Focusing on counting, on breathing. I focused on speaking to him; or staring at a point, on the floor or ceiling. Anything really. Steve was amazed by what I was able to withstand, as many of his patients required pain relief in the treatments. In many ways, I couldn't tell him how I was doing it, only that I knew this would benefit me and I had to make it work. So I tolerated the discomfort for the greater cause. It made significant improvements physically.

But the pain remained. Never ending. What did change over the years was that I started to actually live again. My amazing family; my dearest partner; those wonderful friends who stuck by me and never treated me any different. Those of whom accepted every excuse when I couldn't go out without question; though letting me know how much they appreciate it when I could. Tolerating the times when I would “drop off the radar”, or the times my behaviour was unacceptable. These people are what made me find my fighter inside, they fought for me when I had given up.

It is really only in the past few years that I realised just how much I had experienced. I saw that I did in fact, know what the answers were. I knew because I had already done it – I travelled WITH Pain quite well. Those short interludes of "pain days" were nowhere near as frequent as the incredible days in which anything was possible. That was what I wanted again, to co-exist with the Pain where I called the shots. It shouldn't matter whether the Pain is there or not, it's not who I was.

I found a website that sold mirror boxes (in the UK, I can't remember the name). It wasn't expensive, but I figured that worse come to worst, I could still use it for exercise. I cannot describe the feeling I had the first time I looked into that mirror and saw a normal-looking right hand. The fingers moving just like they did when I was 20 years old, fingers that drew so well without even a second thought. I felt a spark, a new connection being made in my brain that maybe, just maybe, knew what it was like to have normal arms.

Just like everything else, it isn't a magic cure. There is no cure. Years of pain bombardment has made my body into a Pain-lightning-rod. However, when you have nothing to lose, the only way is up. It is another tool in the box, one that I can use with no harm done. It might work, or not, but my tool box is full of things like this. Things that work only as a part of a set, and not individually.

It is nice to see, two hands working in sync. If there were piano keys under my fingertips, maybe I could play. That is the dream, the goal one day. Maybe I could be that person who had two pain-free and normal-moving arms. Just like everyone else.

I chuckled when Moseley told the story of the woman with 25 years of back pain, being cured after seeing a psychic. I had a similar experience, when I saw a psychic some years back. I am a skeptic by nature, but all the same I believe in fate. The psychic I saw was also rather accurate. What was more remarkable though, was that she told me that she didn't see whatever was wrong with my arm affecting my future. “Don't pay attention to it, it will feed off that and get worse.” I took that to heart. A few years later and I was on the greatest adventure I could do - travelling alone over thousands of kilometres; meeting people and being inside cultures that were so different to all I knew. And I paid as little attention to the Pain as I could.

Though I still have it and it still screams just as loud; I try not to listen, and then it really doesn't matter! It has no importance in the scheme of things, it just is. I don't think I could be where I am without those caring and special doctors and therapists; those who never questioned my pain experience. Who were honest in admitting that they didn't really understand this Pain; but were willing to help me find the things that worked and would enable me to live again - hand in hand with the Pain. 

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