Pain communication breakdown

I have lived with pain for most of my life. My journey with injuries began at 14 years of age: two right knee subluxations and a surgery. In early twenties I injured my right lower back when I fell in a pothole whilst jogging.

These early injuries that I thought had healed did something called priming, a physical weakness for what was to come. In Ayurveda we call is khavaigunya. The following injuries impacted my right side, or the superficial back line of the  fascial network. Chinese call it the bladder meridian. 

Years later, I experienced a facet dislocation in my thoracic region with yoga and in 2004, again as a result of an intense Ashtanga yoga practice, I injured my lower back again. This time it was a sharp, shooting pain started radiating down to my leg and toe. The doctor said, “Oh, you are very bendy, there must be nothing wrong with you. It’s all in your head. Go and stretch more!” So, I did. I stretched my injured nerve even more and ended up with pain at an almost incapacitating intensity.

In 2008, I suffered from shingles, which left a highly irritating muscle twitch in my middle back, even more annoying than the lower back pain. In 2009, I landed on my head in the sand while learning to kite-surf, dislocating a vertebra. In 2017, I developed arthritis in my toe as a result of wearing high heels.

After many tests, investigations, and therapies, and a long time passing, I still did not have a proper diagnosis for the back pain. It was thought to be a femoral nerve injury (it is actually a lateral cutaneous nerve), but no one, even at Harley Street, made sense to it. The MRI came out inconclusive, and hands were thrown up in defeat. “We don’t know what’s wrong with you, but let’s try a steroid injection at least!” That didn’t help either.

At that point, my life had become driven by pain. The doctors were reluctant to prescribe me stronger medication for fear of misuse. Without asking if I had ever misused drugs, the decision was already made for me. I had to call my mum to smuggle me some naproxen. Thank goodness she had free access to them, so I managed to medicate my flare-ups.

One doctor finally prescribed me five visits with a physiotherapist who had more understanding and prescribed me abdominal strength exercises to support my back. I still to them daily as I noticed the benefits but it was a long journey before I noticed the results. 

In the mean time, in my desperation, I realised something had to be done differently, and the universe answered: I found an online training in chronic pain that revealed that my pain was mostly in my feelings and attitudes, in my head, in other words. This insight changed everything, and within two weeks, I was already feeling much better.

I also started to practice a different style of medication called Vedic meditation. That resolved my shingles muscle twitch in two sessions. Also, the neuropathic flare-ups are less frequent, and the toe pain no longer keeps me awake at night.

My journey is shared by so many chronic pain sufferers: an extended clinical journey, multiple specialists, unnecessary investigations, harmful advice, conflicting information about pain, dismissive attitudes, and persistent misbeliefs about the intensity of pain.

Now, because of my studies, I understand what and why this all happened: a lack of education in pain management. When my back pain needed to be taken seriously, there were no multidisciplinary pain specialist teams that could employ a dynamic, multimodal, patient-centred approach to support me back to health. Even today, this standardised approach is not available to many. Not only do old attitudes about pain persist, but the ongoing lack of education and resources also limits the establishment of such teams. These teams should be able available everywhere and thus able to identify risk groups and take prompt action to prevent chronification. Luckily, there is a major financial gain for it to happen. The direct cost of treating chronic back pain in UK is £1.6 billion and the indirect cost to the society a staggering £10 billion a year.

In my own clinical practice, chronic pain is common. My clients are usually those who suffer from mild to medium pain, have already gone through a clinical journey but because their condition is often considered subclinical, not severe enough, they haven’t found a diagnosis to explain their discomfort. Or, they may have had a diagnosis but no significant improvement in their condition.

One of my most recent client calls was about chronic pain she had endured since she was 14. Now in her seventies, the pain is getting worse. I immediately sympathised with her and revealed how the pain resides in feelings and attitudes, in other words, in her head… A mistake that taught me a lot.

The information about the psychology of pain can be a shocking revelation, particularly for someone who has suffered for long and feels the pain intensely in their tissues. This pain has been a constant for much of their life.

I had to have a board meeting with myself to evaluate why I had lost that client and accept the learning that the nature of chronic pain is going to be a challenge to communicate.

I still live with pain. Living with it has motivated me to learn, practice, and eventually teach Ayurveda and specialise in pain management through my master’s degree. I’ve learned the art of focus, meditation, and breathwork, and I’ve discovered a healthier way to relate to my body. I have created an invisible toolbox based on an “if-then” approach. The box contains habits and behaviours that I engage if something happens, then I pull this contextually appropriate tool out. These tools help me to limit or even stop the development of flare-ups.

I was once defined by pain. Now, I am inspired by it. I changed my attitude and discovered and developed myself. The next thing is I need to learn how to communicate this insight better.

Anu Paavola

UCL student no: 2425050in t