Casey’s Story: A Guest Blog

I’ve decided to share a story about someone that had a wonderful outcome from engaging in a pain program. The story takes you on a rollercoaster ride of physical and emotional experiences.  I agreed to share it because the story identifies areas in our current practice that have created misconceptions about pain and what to do about it. This guest blog is an opportunity for clinicians to learn, be inspired and to connect with others. It is also a blog for people living with pain to know that there are options that can be explored.

The person is someone that wanted a platform to share their story so others could learn and gain from her experiences. So, without further ado introducing Casey’s Story.

The Medical Merry-Go-Round

A little over two years ago I would have described myself as a happy, bubbly 20 year old who loved running, hockey and life. How I thought I knew myself slowly began to change after I injured my back (hyperextension lead to what I believe were stress fractures in my lower spinal disks).  When the injury initially occurred, I wasn’t very concerned about it. I thought it was a minor, nothing to be concerned about. I continued to go to the gym, walk around and carry on my day as usual. As they days went on, my pain increased rather than diminished – pushing me to seek help from the university physio. He assured me I had broken nothing, and in a few short weeks would be on my way again. After weekly visits for about 3 months (and completing my exercises religiously), the pain was not receding. I began to question whether something more serious was going on – had I perhaps fractured my spine? The pain I was feeling was definitely in my spine itself, not the muscles around it, as the physio kept trying to convince me.  Eventually, not seeing any results, I decided to visit my GP. I requested X-rays, which showed nothing except mild scoliosis. The GP said I also had “a funny back” and that trying to fix the lower vertebrae was a fine art, and pinpointing the pain was not often done. She said I may have to learn to just live with the pain, and suggested I visit an Osteopath.

Visiting the osteo was the first relief I had in months. He gave me exercises to increase the range of motion in my spine (which had become very limited and stiff due to the pain), massaged the muscles around my lower back and manipulated the top of my spine (once again to help with motion). He treated me for a twisted pelvis, which he said was likely due to me having to change the way I walked and moved to protect myself from the pain. This osteo was unique in the fact that he began to explain the power of thought and emotion and the role it plays in pain – after months of weekly sessions, I began to feel like quite the expert in this field. However, little did I know that after constantly telling myself “I’m fine, nothing is wrong, my back is getting better” that I was overlooking the fact that my pain levels were not improving. The osteo showed me a YouTube video of a man in Australia who got bitten by a snake while out walking. After he had been treated, he was out walking in the bush again and felt agonising pain searing up his leg. The pain, similar to the snake bite, caused the man to scream. However, when looking down, the source of the pain was a mere stick. From this video, I could see the importance of the role the brain played in pain. My understanding of these concepts were that pain could be controlled through thought. If I thought positive thoughts about how I was getting better, then my brain would believe it and I would miraculously be healed. Although thinking positively is, I believe, important – I do not think that it should be the sole focus. In my experience, when I wasn’t getting the results I wanted even though I had almost brainwashed myself with the positivity mantra (that I constantly chanted to myself), I felt like a failure. Obviously the reason I wasn’t getting better is because I wasn’t thinking positively enough – perhaps I had too much self-doubt or wasn’t believing the words I was telling myself. This added into the emotional stress I was experiencing. My parents had serious concerns and had sat me down numerous times to try and get me to go to a specialist. My response: “No, I’m fine, nothing is wrong, my back is getting better”.

A Year Of Struggles

By this stage, I had been in pain for one year. As a studious, A+ student, I was spending up to 8 hours a day in the library studying. My pain was interfering with my focus, my ability to sit still (even for my hour long lectures) and especially my emotions. I had not been able to run, play hockey or live life like any other normal 20 year old. I became angry at people who took their active lifestyles for granted. I became angry at people who complained about having to go to the gym, or people who were overweight and suffering from pain that could be so easily remedied.  Under the advice of the osteo, I began Pilates to help with the movement in my spine. This helped my mood – I was finally able to be active again. It seemed to help my spine, but the pain was still ever present. I thought I was doing better.

Over the course of a week, my knees became incredibly sensitive with sharp shooting pains in the joint every time I walked down stairs, bent down, put pressure on them, walked, ran – basically if I looked at them funny they hurt. No longer able to do many basic functions (such as sitting for more than 10 minutes, bending down, squatting, stairs, kneeling etc) I had to give up Pilates – my last solace. I went back to the osteo in an extreme panic. What was happening? What had I done now? He chalked it down to the possibility of chondromalacia patella in both my knees. Or perhaps my ankles not sitting correctly in the joints.

My parents, now full of worry brought it close to home and explained that they didn’t want me living like this for the rest of my life, and that if something needed to be fixed it had to be done now before any serious damage was done. I decided perhaps it was time to try something else and go to a specialist. The first appointment I could get was two months later – a lifetime away to someone who was in pain all time, and only really able to walk upright, pelvis tucked under, and back straight. Pain was a constant companion. Walking down the street, I would ponder my posture – was it right? Was this the cause of the pain? Are these muscles meant to be engaged? Meant to be this tight? Sitting in lectures, instead of focusing on content I would focus on how I was sitting. Is my tailbone sitting funny? Are my feet flat on the floor? I overanalysed, almost becoming obsessed over what I should be feeling and what muscles I should be using. Constantly thinking how much it hurt, how I didn’t know what was wrong, how likely was it that it was going to get better. As time moved on, my mood worsened. I was exhausted from overthinking every little movement I did. I was so sick of not being able to do anything –seeing people my own age frolicking around in glee, taking all their movement and pain free agility for granted only made this worse. I missed exercise and the endorphins that came with it. I missed my life. The old me. The happy girl who flounced around. The new me was frail, fragile and had little fight left.

Any Closer To The Truth?

Eventually it was time for the specialist appointment. X rays showed my knees were slightly abnormally shaped (from my understanding the patella was rubbing or something along those lines) but was still within normal bounds. Nothing further was done about my back – the specialist putting the pain down to sitting and studying for too long. She recommended a personal trainer to strengthen the muscles and IT band in order to pull my patella into place and to strengthen my back. A visit to the podiatrist was also in order. I left happier. A solution – something to work on. I put all my efforts into this new training. I had PT twice a week and visited the gym six days a week. I built my muscle up, and my knees and back pain improved slightly. The pain improved to a certain level and then plateaued. I did this for three months, until I got fed up with the lack of progress compared to all the work I was putting into this. At this point, I had begun a full time internship at a large accounting firm. The hours were from 7.30-5. Killer. It was struggle to sit for an hour at a time, and in order to try and reduce the pain, was constantly rolling a tennis ball underfoot when sitting to try keep my knees moving. I ended up walking for half an hour before work and all through my lunch break to “prepare” my knees for the upcoming torture they would have to endure. When I wasn’t thinking about my knees, I was thinking about how painful the contact of the chair was on my lower spine, and when I stood how I felt my spine compressing down and the pain spreading up through the muscles in my hips and lower back. I decided to go to the podiatrist. $500 later and a new pair of orthotics I was on my way again – this time with zero improvement. To help with the back pain, I went to a very talented chiropractor who manipulated my back and relieved the pressure. This pain relief was temporary, only to return the next day. No progress was being made. I decided it was time to pay the specialist another visit.

However, I discovered that my specialist had relocated and was therefore referred to someone else again. Back to square one. This time, I was sent to have MRIs on my back and both knees (hallelujah). My back showed “flattened” disks at my lumbar spine – finally I knew the pain wasn’t in my head and it wasn’t due to me not thinking positively. My knees however showed nothing – a set of normal knees. Not the result I wanted – because how can you treat…nothing? The specialist gave me Nortriptyline and referred me to a physio. The Nortriptyline was great and I definitely felt a difference. But I was still functioning at around 60%. I still wasn’t running, I still wasn’t happy to crouch or do any explosive activity – all of which I had been warned against by numerous health care physicians. I had gone one step up and plateaued once again. The specialist said he had done all he could, but would give me an epidural injection so that I could focus on the exercises given by the physio. By this stage I had been dealing with the pain for around 1.5 years.

With renewed hope, I went to the physio and eagerly began the exercises she provided. Twice a day, as instructed – taking about 30-40 minutes each time. We started off slowly and then increased activity level. This aggravated my knees, turning them an angry red with heat radiating out. I brought this to her attention and we dropped the level of intensity. For about two months this was the norm, me doing my activities and dropping back down a level to the basics. It was disheartening. Once again, no improvement for all the effort I was putting in. We tried strapping my knees as she saw they weren’t tracking correctly, however this did not help except give me a new fashion trend to wear around. My mood was being affected now more than ever. At 21 I was as good as a disabled person. People would tell me “look on the bright side – at least you aren’t in a wheelchair”. This only angered me more, as I felt just as trapped in my body as I would have in a wheelchair. The main difference being that people couldn’t tell I was injured. I didn’t have a cast, or open wounds that alerted people to the pain. People would get annoyed when they asked me to do something, and I had to use the excuse that I couldn’t physically do it – to them I think it appeared that I was lazy and using the pain as a scapegoat. I got dirty looks when I used the elevator to go up one level at university instead of using the stairs. These judgements added to the frustration I was already feeling. I began to focus on the negative – I would never be able to learn to surf (something on my bucket list), I would never be able to pick up my future children, I would never feel the freedom of running and wind on my face as I had before. The thoughts pulled me down, becoming my own worst enemy. I hated spending time alone. Time to think. That hour on the bus that most people spend looking at their phones? This became one of the worst parts of my day – no distractions, no uni work, no TV – just me. I got home angry, sad and depressed. After weeks of holding the emotions in I would break down, cry myself to sleep and sob at the injustice of life. Why had I been dealt this hand? And the cycle would continue – only to be made worse by finding out I could no longer do more things I had thought I could do before (such as wearing heels) or by awakening from a vivid dream where I was running freely. I was sinking very low and it scared me, but I didn’t tell anyone. What would they be able to do anyway?

It was when I broke down in front of the physio that she spoke to me about the Pain Clinic. An unventured path that I had yet to explore. By this stage, I was ready to go to a witchdoctor or anyone with any kind of claim to health care experience. Hell, drugs were even starting to look attractive. I gratefully accepted her offer and she put through the paper work.

A New Hope

The first time I met the pain physio, I had to tell him my story – what had been done, what did I think the diagnoses were, who had I seen etc. As soon as I opened my mouth to try explain the ragged, exhausting journey I had been on the tears flowed and the emotions I had been holding back and keeping away started to rear their heads again. Trying to hold it together I got it all out. The first thing he told me was “I can’t promise that you will walk away from here pain free”. It was one of the first things someone had said to me that made me feel better. Gone were the empty promises, the “oh a few weeks will have you sorted!”, the “It’s all in your head you are fine” – the first person to be real with me. I can’t even remember what the rest of the session was about, but I walked out feeling like I was finally in the right place. I went back again eager to see what the next session would hold. The pain physio was unlike any of the health care physicians I had visited – quite a feat after considering the length of this list. Unlike the other two physios, he encouraged me not to overthink about posture and muscle engagement. It is something that you should do naturally – like breathing. Of course you can focus your attention on breathing and change it at will – but should you change your focus, you do not suffocate as the body takes over. He never told me what to do (in terms of muscle use or posture) but rather let me explore how to do it myself. Although this was tough at the beginning due to my lack of confidence, it definitely taught me that we can never replicate a movement exactly again and helped me not to focus my attention on certain parts of the body. For example, when I started my new job a few weeks ago, I had to place boxes (about 5kgs) up on a high shelf. In my work environment, I was searching for pain before I had even begun the exercise and then exploring this pain when I put the box up on the shelf. Panicked, I went to the pain physio to tell him of this perplexing issue. During our session, he gave me exercises with a 5kg bag and asked me to put that up on a high shelf in whatever way I wanted. In the safety of the clinic environment, it was a piece of cake. I played around with different movement and exercises and became confident enough to upgrade to a 10kg bag (I know – go me!). The next day when I went to work, I thought about how I was throwing around the bags of weight and all of a sudden, the small boxes didn’t seem so daunting. I now do this twice a day, every day without giving it a second thought.

I had been struggling with the concept of moving my focus from the pained areas for a long time now. One simple “game” the pain physio played with me resulted in one of my greatest achievements – a change where I felt my mind shift. He took a pole and simply played a variation of tag. I had to avoid contact with the pole. I had no time to think about what muscles were moving, what was being engaged, what positions may possibly hurt me, I just had to move. And I moved freely. Without thinking. For the first time in 2 years. This was so different to the other practitioners who had told me specifically to focus on certain areas when completing exercises. They had explicitly told me where and what I should be feeling. It was a huge milestone – I now had the ability to move freely.

When talking about diagnoses, exercises or pain, the pain physio always asked my opinion first – asking me what I thought was going on and why I thought this. He would then explore my answers with me, sometimes challenging my beliefs. For example, when I was squatting and got to a certain point, I felt pain. Yet, when we replicated this movement in different positioning – I did not. We explored why I thought this and what possible causes were. This grew my understanding of what was happening and why, as he and I came to a conclusion together – rather than diagnoses being flung at me left right and centre. I feel that this also helped he and I to connect more, as it felt like a team effort that we reached together and I felt that he valued my input and opinions. Of course, after spending hours at a time with practitioners, I built relationships and bonds – yet it was rare to have a deeper connection where you truly feel that the practitioner understands what you are experiencing, the emotions that go with it, the highs and lows and who celebrates your successes with you. Through this connection with him, I felt like I was not going through this alone anymore. I had someone who didn’t look at my situation from the outside, shrug and say “well it sucks to be you” – I had someone who was genuinely experiencing my pain with me.

Unlike other practitioners, the pain physio not only focused on the physical and muscular aspect of pain, but also the emotional and chemical aspects. He explained the effect of emotions in the pain cycle and how it can affect the pain. He explained the effect of positive and negative reinforcers, the stress responses, fear avoidance, activity anxiety, how pain does not necessarily equal tissue damage, chemical reactions from negative thoughts/stress and so many more concepts that made my condition so much more understandable. He did not dumb everything down, but elegantly explained the concepts using metaphor in such a way that I could still grasp and understand what they meant. I have grieved for the person I was, and mourned her loss, but through this, I have managed to learn so much more about myself and about the human body and processes behind it. We are so much more than just a body full of muscle and bones – something which was never conveyed to me over the last two years. The thoughts in my head and the emotions I was feeling released chemicals and resulted in actual physiological changes – I wasn’t just a depressed sad sack after all. Learning to deal with and understand these emotions, thoughts and stress reactions in my body has been a huge step in my recovery. I am in a much better place mentally – to the point where people are commenting that it is nice to have the “old you back”. I have gotten my sense of humour back (even though some would argue I wasn’t funny to begin with), I smile more, and my mind no longer wanders back to my pain. Instead, I am thinking normally again – did I forget to turn off the stove? What do I need from the shops?

As part of the Pain Programme, I had access to a brilliant psychologist. The psychologist reinforced these ideas the pain physio was talking about, giving me chemical compounds and processes to wrap my head around. As well as this, she gave me coping mechanisms and activities to move my brain from “stress” to “normal”. Symptom searching, healthy attention, experimental avoidance and anticipatory pain were topics we explored together – which all add to the physical and emotional pain. I like to think that through this I was able to ‘rewire’ my neural pathways. The pain physio helped me to measure this change through measuring my heart rate variability (it was really nice to physically measure the mental progress I was working hard to achieve). Emotions and mental processes play such a huge part in pain, and this has been a fascinating area to explore and learn about.

One roadblock I found was that I wasn’t transferring skills I had learnt in the clinic environment to my own personal environments. I could easily lift 10kgs in the gym, but was struggling to lift 5kg bags of dog food at home. Another feature of the pain physio’s approach was to help me link what we were doing to real life scenarios. Instead of lifting dumbbells, we were lifting bottles of milk at the supermarket. Instead of jumping on equipment in the gym, we jumped from rock to rock at the beach. I was strengthening the muscles in my body, but I was also strengthening the relationship and positively reinforcing memories/understanding between my brain and the environment. Once again, I took a massive step in my progress. Unlike any other physio/chiro/osteo/GP/podiatrist/specialist, he took me out of the clinic. Our first outdoor session was a run along the grass outside – probably 20 meters at a time. It was the first time I had run in 2 years. I felt no pain (only a little discomfort, which is understandable after not doing it for so long) – which absolutely shocked me to my core. I cried happy tears when I got back to my car after that. It was dawning on me that I could perhaps return to a semblance of my old self. Fast forward a few months to present time. He and I now go running on the beach as part of our sessions. I only stop running when I get puffed, and have never had to stop because of pain. Each time we go a little further, and each time my confidence increases exponentially. If you had told me I would be doing this four months ago I would have laughed in your face – my progress has shocked me and cannot express how far I have come.

The Future’s Bright

I have not yet found myself frustrated with lack of progress. I am always encouraged to work on something (currently we are focusing on getting me to complete the Vietnamese squat), using unconventional, creative methods that actually make a difference. After reaching goal after goal, I have no doubt that I will get there. I have no doubt that I will be able to reach what I set my mind to – a complete 360 to how I felt months beforehand. Working with the pain physio has given me my life back, and given me a better quality of life than I thought possible. I finally feel hopeful, happy and dare I say it… free. The negative thoughts are still a struggle I live with, and I have to work every day on not focusing on the areas of pain. As the days are going by, I am thinking less and less about what activities may or may not hurt, what positions will be painful and what possible injuries I may inflict on myself.  When I am in a situation where I feel my breath hike and my heart rate increase due to the anxiety (such as today when I knelt down and felt a stabbing pain in my knee), I take a deep breathe, shrug off the panic and diffuse the situation – pain does not equal tissue damage, stop being a big baby – and the pain seems to reduce. The next time when I try the same movement, the pain is less and the cycle continues.

As time will move forward, so will I. This I have no concerns over. Even though I may not be pain free, I now know how to cope with pain and how not to get caught up in the pain cycle. I finally feel like a normal 22 year old girl, and have set myself goals to work towards to continue my progress. I am so grateful for the pain physio’s influence, guidance and knowledge that no words are enough to express my gratitude.

Thanks so much to Casey for sharing her story. It is hoped that people reading this have had the opportunity to gain some insight into avenues that can be explored for others that to are living with pain.

Thanks for having a read

TNP

N.B. Full consent has been given by the author to publish their work.