I was an active, outgoing, sporty kid. At 12, I was diagnosed with scoliosis. I wore a brace for 22 hours a day for 3 years. At the age of 16, when I stopped growing, my brace was able to come off. My curves were not bad enough for surgery so I was in “wait and see mode”. I was able to carry on with normal teenage life and even played competitive basketball at the Ontario level up until I was 18. When I turned 22, I formally transferred over from my pediatrician to an ‘adult doctor’. It turned out that during my late teens/early twenties, my spine had actually gotten worse.
I had my first spinal fusion surgery in 1998. My body had a bad reaction to the titanium and was literally rejecting the metal and breaking it off in flakes into my tissues. I had to have a second surgery in 1999 in order to have everything removed. During this time, I had graduated from the University of Western Ontario’s business school and was running a 1,250 person residence. But the pace was too much. I wasn’t healing enough and I needed to slow down and take care of my health; on my surgeon’s ‘orders’ I moved home to focus on recovery.
When you can’t sleep
I have no idea why, but ten years after my last back surgery, the nerve pain started. None of my health team knows why. But in 2009, I started having problems sleeping. I wouldn’t get more than 2 hours a night because I’d wake up crying from pain and was feeling nauseous. I thought I was going to lose my mind from a combination of lack of sleep and pain. I had been going to my physiotherapist for 8 years and, after the first few weeks of troubled sleeping, she suggested it could be neuropathic pain. Talking it over with my family doctor, I got a referral to a pain specialist.
At my first appointment, my doctor handed over a sheet of pain symptoms and told me to circle any that applied. I remember smiling as I checked off each symptom: “feels like insects crawling on my back”, “burning”, and “prickly”. Finally-- language that could describe what I was experiencing! And if this was familiar to my doctor, I thought, maybe he would know how to help me.
Afterwards, he took me for an ‘examination’. I use the term loosely because it was so simple. He simply unhinged a paperclip and touched it lightly to my right shoulder and lower left back. Immediately, saucer-sized red spots appeared on my back where the paper clip had touched. He told me that it was obvious that I had an extremely overactive nervous system and that I was in tremendous amounts of pain. From there, we mapped out a pain management plan.
A neuropathy flare up.
Initially, I had a prescription for pregabalin (Lyrica) and lorazepam (Ativan). We also went ahead with the necessary assessments for me to receive Botox injections in my back. We had no idea if my neuropathic pain was permanent or temporary, or some mix of the two. Nor would we find out until we calmed the affected areas down. My shoulder was so painful that I had not let my physiotherapist or massage therapist touch/assess it for 10 years, let alone do any exercises to strengthen the area/improve posture.
Botox treatment consisted of approximately 85 injections, in a grid-like pattern, across my back once every 3 months. Getting this done was extremely painful for someone whose back already is sensitive to the lightest touch (let alone 85 needles) – but it was worth it. There was some immediate relief as the Botox was mixed with lidocaine, but overall the first 2 days after the injections were pretty uncomfortable. Relief would come between 3-5 days after the procedure and last for 2-2.5 months. Regulations wouldn’t allow me to get them more often than every 3 months, so for the last few weeks of each cycle, I had to manage as best I could and wait it out.
After two years of Botox treatment, as I was approaching the end of a 3-month cycle, I noticed there wasn’t much pain. I was used to the treatment wearing off and I kept waiting for the pain to come back. We pushed my next treatment by a month to see if the pain would come back - but it didn’t. The longer we waited, the more apparent it became that the intensity of my pain had diminished.
I had started seeing a Reiki master – an energy healer- in April 2011. After my first visit with him, my pain was completely gone; it was only for an hour mind you, but it was enough to get me interested. That was the first time that anything had removed my pain entirely, even though it was brief. Regular visits were helping and within 5 months of my first visit, I had stopped the Botox injections entirely. On top of that, I had begun practicing mindfulness meditation to help me calm my nervous system.
I still use some other pain medications to help me sleep. My doctor always tells me that if I’m not getting 6-7 hours of sleep every night – he’s not getting my medication right. I use a cannabis-based spray called Sativex under my tongue before I go to bed. I also take pregabalin, lorazepam and a topical cream pain killer. These help me to get a full night’s rest and manage through any particularly bad days.
Life at 40
This year, at age 40, I had my third spinal fusion surgery. My last spinal surgery went well, though I’m still recovering. I’m also experiencing new kinds of nerve pain in my back. For example, my lower back feels like someone has rubbed sandpaper across my skin. The difference, this time, is that I know what it is. When you’re in so much pain, you just focus on getting through the day. But when I look back over the past 15 years, I can appreciate that I’ve actually come a long way. I have a better understanding of what I’m going through, I have a medical team to support me and the tools I need to manage my pain.
Neuropathic pain affects every part of your life – and not everyone can appreciate what that means. I have lost friends because of my pain. Some think that if I didn’t attend their party, it was because I didn’t want to – not that I was lying in my bed at home in agony. And I missed out on many social events. People don’t understand that you can’t ‘push through’ nerve pain. On the flip side, I know that the friends and family I do have are with me through thick and thin.
I’ve had to find new ways to talk about pain because my experience is so far removed from what people normally understand as ‘pain’. Unless people have experienced it - or have lived with someone who has it – it’s so hard to comprehend. People expect that you should feel better 2 weeks after the doctor has prescribed you some medication. But that’s just not a reality.
Through this experience, I’ve learned that I can’t shy away from difficult or painful points in my life – physical or emotional. When you lie in bed all day you think about who you are, what your purpose is. I think people typically start facing these questions as they age and face health problems. Who am I if I can’t DO anything? What am I worth if I can’t walk? If I can’t do the things I used to do? I started having to deal with those questions in my early 30’s.
I’m cognizant of the fact that everyone has different challenges in life. There are people who go through all kinds of emotional or physical trauma. There are people in worse situations than I am in. While it’s not always easy to cope with the pain, I can manage it – I’ve had to – and I can handle this being my challenge. Over time, I’ve learnt how to step into pain – and that there is something good on the other side if you’re willing to go through it. One of my favourite sayings is a Japanese proverb: Fall seven times, stand up eight. Every time I ‘fall down’, I get back up. When I’m down, I may say I’m not getting up, I really might not want to get up, but I know that I always will.
My advice for anyone newly diagnosed with neuropathic pain?
- Communicate honestly with your doctor – express your pain honestly. For so long, no one understood what I was going through, so I had to unlearn some bad habits of suppressing what I perceived to be ‘complaining’. They can’t help if they don’t know what’s going on. As my pain specialist said to me on my first visit “If an average person woke up one day with the pain you are experiencing, they’d be screaming bloody murder all the way to the hospital – and you’re telling me you’re a 4/10 on the pain scale”. It really changed my perspective and helped me re-learn how to be a ‘complainer’.
- There is always someone who knows how to help. You could get a diagnosis from your family doctor, but they might not know what to do with it. You might need to search and travel for the right healthcare options – but it’s worth it.
- Be kind to yourself. If you need rest and medication, take it. I used to try and tough out the pain until I realized that no one was going to show up at my door with a medal. There was no point in being a hero – I was just hurting myself. I learned to rest and take my medications when I needed to.