Peter Moore - The Journey of Pain and Recovery

To my fellow pain warriors in The Australian Pain Management Association (APMA). I write to share my experiences over many years in the hope that it may provide support, hope and inspiration to my colleagues, both known to me through the pain group, and to those who are suffering and looking for help.

This story is not about self-aggrandizement, nor about heroics. It is a story told by a wanderer on this planet who has been plagued by pain all his life and has learnt to adapt, change and live with the hand delivered at birth, whilst making some sense of it all and maintaining dignity, purpose, and a sense of self-worth. There is no silver bullet here, nor magic solution. This is a story of the recovery of one’s soul.

History:
At the age of 10 I was diagnosed with Scheuermann's disease, also known as Scheuermann's kyphosis. I was also diagnosed with spondylolisthesis which is a condition where one of the bones in your spine (a vertebra) slips forward and out of place. This in turn puts pressure on the spinal cord which then produced paraplegia.

My spondylolisthesis was at L5/S1 (lumbar and sacral spine joints) and I experienced an episode where I could not walk for several days due to short term paraplegia as a result of jumping off sand hills during a summer beach side holiday. With bed rest I recovered but had to change my life with regard to sporting activities to reduce the chance of further episodes of paralysis. This was a life-changing event and one which would forge my pain landscape for the remainder of my life.

I subsequently lived with lower back pain from that point onward until surgery nearly 30 years later. Some days were better than others, however over exertion would aggravate the pain in my lower back and I was always aware of what activities would increase my pain. This was my life!

The following are treatments which I pursued over many years and the results which I had, or did not have, in exploring them. Remember, we are all unique and our pain experience is unique.

Treatments:
1995: The pain in my lower back had become so bad that, after exploring and trying many medications and treatments, I had a spinal fusion operation at L5/S1 level of my spine. The operation was successful, but I was warned by the surgeon that I would have problems later in life due to the fusing of my spine. I made a good recovery and lived with little pain for a number of years thereafter.

Back pain in my thoracic spine then developed in 2005 and worsened over the next 10 years. I tried many treatments including medications (which affected my cognitive capacity), as well as physiotherapy, chiropractic, Pilates, reflexology and others. No treatments effectively managed the pain. I lived with it and put up with the pain which made life difficult until 2015 when the pain literally stopped me in my tracks and I had to stop work to seek further treatment.

2015: I had a spinal cord stimulator implanted in my back, the aim of which is to disturb the pain signals traveling from my spine to my brain to provide some pain relief. It did not actually stop the pain and I had to cease work permanently. I subsequently sold my business and then went into mental decline. I suffered chronic depression and anxiety for the next 7 years which, in my opinion, added to my physical pain.

2015 - 2022: During this period, I was treated by numerous pain management specialists and medicated with numerous classes and types of pain medication, mostly opioid in nature. Whilst most of the medications made me ill, they generally did little to reduce pain and I suffered debilitating pain during this time. I explored medical cannabis amongst prescription and non-prescription (herbal treatment) remedies. But to no avail. I was also seeing specialists for my mental health due to my debilitation and loss of amenity of life.

2022: I had been taking Palexia since 2015, both slow release in the morning and immediate release as and when required. I was also taking anti-depressants, anti-psychotics as well as benzodiazepines. I decided to cease taking all medication, the outcome of which was that I did not feel sick anymore and my pain level was exactly the same! Even better, I had my brain back and felt, within a few weeks, that I had gained so much. The doctors warned me about withdrawal from these medications, but I took it upon myself to take more control of my life. I do not recommend anyone take this course of action and one should seek medical opinion regarding their own health. As I said, this is my story, and everyone’s situation is unique.

Early 2022: I commenced psychotherapy with a psychologist trained in pain conditions. The treatment lasted for 12 months which assisted me to build the mental tools to deal with debilitating pain and was instrumental in my recovery. This was not a panacea but did help me in dealing with my pain. I remember the very first session when the therapist told me that she could not stop the pain, but could give me the tools to get a better quality of life. Therapy, as some of you know, is a long and arduous process, but with the right therapist and determination, this assisted me with my recovery.

Late 2022 I was treated with Transcranial Magnetic Stimulation (TMS). This involves sending magnetic pulses into the pre-frontal cortex of the brain to a depth of about three to four centimetres. The treatment was carried out in a clinic as an outpatient and involved 18 sessions each of 20 minutes duration. Whilst I felt that the treatment did assist me, the positive effects were not enduring and my mental health went into further decline.

Late 2022: I undertook ketamine infusion treatment which involved 5 days in hospital hooked up to a drip. I experienced some pain relief during treatment, but it did not endure post hospitisation. I was concerned about having the treatment, but experienced no adverse side effects from it.

Early 2023: I was suffering from ongoing pain and struggling with poor mental health. I then had a second Ketamine infusion treatment involving a further 5 days in hospital. Again, I had temporary relief, but no long term pain relief. On this occasion, I spent the time thinking about my situation and the long and arduous journey that I had been on.

Possibilities:
During my TMS treatment I did some research and discovered that essential fatty acids such as those in fish oil (i.e., omega 3 fatty acids) assist with the treatment of depression. Fatty acids are comprised of EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid), which have slightly different chemical properties. EPA provides anti-inflammatory effects on neurons in the brain and throughout the body. A world-renowned research facility in the USA has found that 1,000mg of EPA taken per day provides the equivalent level of relief in treating depression as most SSRI’s (selective serotonin re-uptake inhibitors). The way this works is that fatty acids, and in particular EPA, reduce the re-uptake of serotonin into the bloodstream, which in turn improves mood and reduces depression. It also has a positive effect on reducing inflammation in other areas of the body. There is a clear linkage between chronic pain and depression, and for me, reducing depression had a positive effect on managing pain.

Whilst in hospital I did a good deal of research into ketamine and how it works. One of its effects is that it puts one into a dissociative state. This means that Ketamine can produce an out-of-body-experience where the mind and consciousness appear to be disconnected to one’s body. I certainly did not feel “out of body”, and it was not intoxicating, but it did allow me to think more clearly and think in a very different way. Everyone’s experience is different with ketamine, so I can only describe how the treatment worked for me and how I made the treatment work for me.

During my time in hospital, I thought long and hard about how I had tried all the medical interventions and was no better off, except for the positive effects of fish oil (which anyone can purchase from a pharmacy without a prescription). I considered living a different life and started to think about the possibilities of a better life and what it would mean. Over the days in hospital I began to think of the things I can do, and not the things I couldn't do. It is amazing what the mind can do when channeled in the right direction.

So I decided that despite my pain and disability, I would do things that I still wanted to do (within the physical constraints of my painful and aging body). I re-commenced activities I once thought I would never be able to do, including returning to work, albeit part-time. I am doing things now I could only dream of a year ago and have enjoyed the experience of many aspects of life which I once thought had left me. I am much happier now and do not suffer from anxiety and depression. Depression lifted when I told myself I could do things and the more I thought about it and the more I did, the more positive I became. My mental health has returned to what it was 8 years ago and I have a zest for life rather than sitting in a chair all day being depressed.

Recovery is a holistic approach,….not all problems have been or will be solved. Yes, I have tough days, but now have the strength to deal with life and all that is has thrown at me, and no doubt will continue to do so.
This is my story with pain and the long road to recovery. I wish you all the very best on your own journey.