This case study is a compilation of notes taken from an interview I had with Simon, an orthodontist living in Australia. Simon had had five years of moderate to severe pain secondary to Multiple Sclerosis and back surgery.
In this interview, he outlines the steps he took and the daily practice he developed to get 95% pain free, and get his life back. Simon is one of the most inspiring individuals I’ve met, and gives an amazing example of what it means to really do the work, and effect a massively positive life change.
A year ago I was going into a very big blackhole. I had been trying to get pain free or pain controlled using the traditional model of pain medication.
But even with ever increasing dosages of opiates I wasn’t getting better. I was in a downward spiral. I got up in the morning, I was in pain, I tried to do stuff, just the normal acts of self care, that created more pain, by bed time my pain was near unbearable and if I couldn’t sleep the next day was an even bigger hell. I wasn’t living, I was just surviving. In fact the only thing I could do well was pain…..I was Mr Pain!
At that time my hands were so sensitive they were next to useless. I almost always wore or carried gloves with me, I even wore rubber gloves to shower. I dreaded cutting my fingernails, not because the act of cutting caused any pain but because it further exposed an area of exquisitely sensitive skin at the tips of my fingers. Cutting my fingernails would literally result in two weeks of increased burning pain. I also had burning pain affecting my thighs and groin and hadn’t slept under bed covers for years because of their weight.
I was on my third pain specialist. Some of the things he was doing seemed to reduce my pain a bit, but it wasn’t working that well.
My pain system was in overdrive. I saw a show on TV where prison guards were getting zapped with a Taser as part of their training, so they’d know what it felt like. They were all panicking before they were Tasered and then after, one of them said “ it was the worst pain he could ever imagine.” And I thought you don’t know what pain is mate, because surely a worse pain would be like being tasered – and then the tasering never stopping. That is what it’s like with chronic pain, you have no idea when, if ever, it will stop.
As part of my routine care, on top of my opiates I was hospitalised for 6-8 days every 3-4 months for ketamine infusions. This continuous infusion is thought to reset your pain dial and settle things down.
Going into hospital to be connected to a drip for 7 days is a bind and that is even without knowing that I wore a ski suit while on the ward to protect me from the air conditioning and I took my own smooth bedding and towels. They were always amused at the size of my suitcase, but they knew their pain reset was working once I started to take off layers of clothing. The thing I looked forward to was being able to cut those finger nails!
The last time I was in for my pain reset all that was achieved was comfortable fingernail cutting. I left hospital after 7 days still wearing my ski clothes.
My pain was now so bad that I couldn’t go outside without a coat on, unless it was above 20 degrees, even a light breeze blowing on my skin would cause pain. Most of my body was now affected by burning pain and altered sensation. I was becoming increasingly housebound and isolated. Pain and or medication was messing up my memory. I couldn’t even give my wife a back rub, it hurt my hands so much.
I always had great faith in my own ability and as I came out of hospital I thought. “Well this is it, Pain Specialists can’t sort you out with medication anymore. If you want a life, Any Kind of Life, it’s up to YOU.”
I knew from previous experience that if I was going to sort myself, then I needed to know absolutely everything about what was going on. I’m that kind of guy. You see when I got the diagnosis of MS, it took me 3-4 years to become my “local expert”, to figure out and learn everything I could about my condition. In a way I was absent, preoccupied if you will, for about 3-4 years from my own life, my family, my wife and I had deliberately avoided going down this path with pain. I had handed over responsibility for my own welfare to 3 successive pain specialists. Pain specialists who only seemed to manage pain with medication. I was a good patient I took my medication, I always did exactly as I was asked but twice I had had to haul myself back from the brink of near disaster and here I was going down the same path again. I had to take action.
At the time, I didn’t feel like any of my successive pain specialists had really listened to me. I’d say “I’m in pain , I unhappy with the amount of pain meds I’m on, and I don’t really want to take more.”
And then somehow in the consult, I’d get talked round, and end up leaving 45 minutes later with prescriptions for even more medicine. More concentrated medication, more of the same.
I’m really saddened by the ‘dinosaur’ doctors who do not even look at what the person is doing in their life.
They don’t look at boom and bust patterns, they don’t look at Mindbody practices and what the person can do themselves to turn down pain.
There was never any suggestion while I was in pain that going back to work or training to run a marathon was perhaps taking on too much. The only advice I got was “don’t go back full time” and that was when I was on the near maximum dose of pain patches. Crazy!
No one ever looked at my lifestyle in relation to pain. No one (even pain specialists) were talking about pain sensitisation. Many of them were not that positive that their patients would ever get out of pain.
Ten weeks after I came out of hospital and 8 weeks after I joined the Life After Pain club and started Jonathan’s course, I went back to my last pain specialist and told him:
“You won’t believe it, but I’ve managed to reduce my Hydromorphone down to almost zero.”
He was surprised. When I told him it was through Mindbody techniques, he said he “Didn’t think anyone else would be able to do the same, would have the required determination, or (worse) the intelligence”. He’d been an attentive physician but I found these comments very disappointing (and not true). Patients I don’t think have been given the option, I wasn’t, there just isn’t that much information on treatments for pain other than surgery and medication.
Pain has changed – it’s not what we thought it was in the 80’s when I was completing my undergraduate training. It’s a different beast. There’s lots of good information out there but you need to go hunting. In my opinion there needs to be a full overhaul of how the medical system currently treats pain.
Most pain specialists don’t talk about the negative effects of pain meds. They’re fine in the short term, but in the long term they make things worse. If you can’t reduce the amount of meds you require, you’re winding up your pain system.
The pharmaceutical model of giving someone some pain medication, then reviewing them again in 4-6 months, and they’re still in pain, and so you give them more pain meds…this isn’t really caring for you the patient.
You have to take charge of the problem yourself. The ‘dinosaur doctors’ are giving information on chronic pain that’s out of date.
Six months ago I thought my life was down the gurgler – finished, over, that was it. I’d really reached the edge. If I’d been on my own, without a family, I don’t like to think what I might have done. I’d worked through codeine, Lyrica, pain patches – fentanyl, Buprenorphine, lignocaine infusions, ketamine troches, ketamine infusions, opiates by the bucket load.
Two weeks after joining Jonathan’s course I put a post up in the Club that I was going to halve my opiates and see how I got on. In that short period of time I had through the use of Mindbody techniques eliminated my pain. Look I was still on my opiates but, I now had no pain and to continue practicing and honing my skills I needed some pain. Over time, I’ve further reduced my medication, I’ve stopped my opiates and the others are a fraction of what they used to be. Actually as I continue to push, I’m not sure any of them are necessary if you have your own skills for pain management.
In summary, you can’t rely on health professionals to do everything when you have chronic pain. You need to take control of the ship yourself. It’s your pain, it’s your life, reclaim it.
For me what really helped was Jonathan’s description of the 3 types of Chronic Pain as this allowed me to begin dissecting down the pain. Breaking it down into smaller more manageable pieces. You only need to change small things, bit by bit to get a large change over time.
With this knowledge I was able to change what I was feeling from a big ball of pain into the 3 Pain Types, and I knew what to do with each one. Anything that takes the heat out of the situation allows you time to look at the smaller pieces of a problem. I didn’t think I had the power to beat this, but when I did, one small piece at a time, I’d proven to myself that I did have the power and you do to.
The information’s there in Jonathan’s book. It’s presented in a way that’s accessible to most people. Jonathan had a thing called ‘The Roadmap Out of Pain.’ He described the Hotline, Autonomic and Reactive Pain, and that gave me a lot of clarity moving forwards.
To start out, I used Mindbody practices on my Hotline pain. Quite quickly I was able to reduce my pain dramatically. I got rid of around 70% of my Hotline pain in the first four weeks. Once I’d done this, the Reactive pain was much easier to see.
I had Reactive pain around going out in the evening. I had serious pain in my back from a previous surgery and prolapsed discs. This would turn on whenever I planned to go out. I would get a stress response, and the pain would switch on. The same Reactive pain surfaced when I went to exercise. And if I didn’t get my medication first thing in the morning or at a particular time in the evening 5.30- 6.00pm, my pain turned up. It was a classic Reactive pain type pattern.
If I felt stress, my pain, particularly my low back pain increased and the skin around my operation site started to sweat profusely – Autonomic pain.
Once I recognised these pain patterns, I could address them properly. I slowly chipped away until the point I’m at now – where I have 5-10% of the pain I was at before. And I’m expecting to ultimately stop all medication and that pain to go as well, because I’m still working on it.
The residual pain I have is Reactive, usually around running or exercise. There’s also a little Hotline pain left affecting a small area of skin below my knees. So I’m still using Jonathan’s Mindbody techniques on these and I’ve accepted that I may need to do this long term but it’s a small price to pay for getting my life back.
This information – breaking chronic pain down into three types of pain – I haven’t found anywhere else. It rings true, and it was the first spark of light in a very dark place and set me on a road to recovery.
I knew after 2 weeks I was really onto something.
It’s not like I hadn’t tried things in the past though. I had done a lot of Breathworks ( a UK pain management program) of relaxation and body scanning. But my pain was so big, I couldn’t move past it. I’d also tried mindfulness training, Reiki, kinesiology, hypnosis, meditation – naming my pain after the school bully and trying to beat him, naming it after my first pet and welcoming him into my soul, acceptance- many things.
But using the Observer (Jonathan’s technique) really worked for me. I would meditate each day on a reclining chair. I was able to imagine an outer body situation where I was observing myself. I was able to observe the pain as just pain.
I could look down on myself and realise there was nothing physically wrong with my hands or legs. That the problem was a pain message that had been dialled right up. I was sensitised to the point when a breeze going over my skin was painful. Lightly touching the hairs on my arm caused pain!
I thought about sensitisation – where you have a small message coming up from my hands. And that message is being read by your brain, but on the way to my brain it’s been hugely magnified. It was being whispered up to a tsunami of pain.
You have to, when you have pain, take charge of your own care and now I had the Power to control my pain – I knew I could go and do my Mindbody practices. And I knew it would make a difference to my pain, because I’d proved it to myself.
You can’t stop medication unless you have some other method of dealing with your pain. It’s empowering to know you can do this for yourself. When you can see that there is light at the end of the tunnel.
The reality is you don’t need a medical background. Knowledge is power. Jonathan presents it in an easily digestible way and once you truely understand what’s going on you’re on the start line. You just need then to put in the effort with your MindBody techniques.
End of Part 1. Click here to read Part 2 – the Evolution of a Daily Practice