If anything, this experience has made me stronger and in a sense, I’m grateful for having had to struggle with this. The wisdom and strength I’ve gained from this is invaluable – I would never be the person I am without this having happened.

I’m a 28 year old psychology student from Nanaimo, BC. I’ve lived here my whole life.  Growing up, I was an elite athlete. I was always into sports. But in 2008, I was injured. It was a brachial plexus nerve avulsion nerve injury, which are the nerves in my shoulder and arm. There was immediately an intense pain and I went into shock. I didn’t know what was going on. 

My hand was purple, blue and swollen. I couldn’t move my arm or my hand. There was no circulation. The pain was the worst thing I’ve ever experienced. I could hardly even articulate what was going on to the doctor. There was a barrier – I was a different person when I was in pain. Doctors kept sending me home because I couldn’t explain what was wrong and they didn’t realize the extent of the injury. It was two or three months before I went into the pain clinic and began to get help.

One of the most healing things about being at the pain clinic was talking to people. Even just the people sitting around me in the waiting room. Being there, with people who understood what I was going through, was comforting. 

The pain clinic diagnosed me with complex regional pain syndrome (CRPS) as a result of my injury. We tried a number of different treatments to see what would offer relief. Stellate ganglion blocks, lidocaine, sodium amatol treatments, ketamine. They would admit me to hospital for a week and try epidurals. None of these really worked for me. The one thing I liked was the TENS machine but that wasn’t a permanent solution. 

Trying surgery 

I ended up having spinal cord stimulation surgery three times. All three times, it was a horrific experience. You’re awake for this surgery, they can’t put you under. I would be in so much pain lying there. I could never get my arm and hand in a comfortable position. They couldn’t give me full dosages of drugs to dull the pain. For the third attempt, I went to Vancouver. They tried a permanent implant that time; but we couldn’t get a good signal where the implant was comfortable for me. They ended up having to just take it out. 

After the three surgeries, I went to see another neurosurgeon in Vancouver. He offered me a dorsal root entry zone legion. That’s basically where they sever the sensory nerves for my hand, directly in my spinal cord. One of the main things I was really struggling with was the sensitivity on the surface of my skin. While my neuropathic pain was horrible, the sensitivity was really interfering with day to day activities. Even little things, like the air brushing over my skin when I moved my arm, or the feeling of my clothing against my skin would hurt. 

In 2010, I decided to try the dorsal root surgery and it turned out to be one of the best decisions of my life. I can drive again, I have free movement of my hand. There were so many things I wasn’t able to do with my hypersensitivity. Before this surgery, my arm was in a sleeve, a sling, a glove, my hand was in a brace; it needed a lot of protection. Now, nothing bothers it. 

Of course there are some risks as well. They nicked my motor nerves during the surgery, so I need to be extra careful. Because I have no feeling (from my shoulder to my fingertips), it’s easier for me to burn, cut, or injure myself. I can’t feel what’s happening on my skin. Regardless, it was worth it. 

When it gets complicated

Last year I got an infection on my finger. I would later learn that people with CRPS have a harder time fighting off infection and heal more slowly. My infected finger resulted in nine surgeries on my arm. I’m still recovering from residual neuropathic pain. Every time I’ve had surgery, it takes a long time for the neuropathy to settle. 

I learned that I really have to be an advocate for myself and that I’m the only one in charge of my care. Through the process of having nine arm surgeries, my healthcare team expanded to include my surgeon, psychiatrist, GP, methadone doctor, rehab specialist, physiotherapist and community nurses. They don’t always communicate with each other effectively. I had to be in charge of advocating for myself. 

What life is like now

I’m on a ton of medication. Gabapentin, carbamazepine, nortriptyline, naproxen. Methadone is the only thing that works when my pain is really bad (though we’re tapering off of that). I’m also on a number of medications for my depression. 

When I’m trying to go to sleep, I meditate. Breathing exercises have also been really effective for me in controlling pain. Exercise and distraction have also been helpful. I’ve learned a lot of different things about pain, anxiety and depression – especially as a Psychology student. 

I get home support now. Someone has been coming to help me this entire time- though on and off. They will help with things like food preparation, showering, changing bed sheets and other day to day stuff. The food preparation has been an essential help. I don’t have feeling in my hand so I can’t cut up vegetables or fruit on my own; if I didn’t have help with that, my diet would be horrible and my quality of life would decline. 

While I’m able to do a lot of things, I need to make conscious choices about what things I’ll spend my energy on. If I choose to do one thing, it might mean I can’t do something else. I’ve slowed down, but it’s been a long process. My depression has gotten worse, but at the same time, I’ve gotten better at managing it. I’ve had to go from being an intensely independent person to someone who can ask for help. That’s been really difficult and very humbling. 

Neuropathic pain is an invisible illness and can affect anyone at any age. I look really, really healthy, able- bodied and young. I experience a lot of ageism, even within the health care system – it’s very frustrating. I’ve had to fight for my rights a lot. Unfortunately, I find that it’s usually when I’m not feeling well. When I feel like I can’t fight, when I’m in a lot of pain - that’s when I need people to support me and believe me. 

If anything, this experience has made me stronger and in a sense, I’m grateful for having had to struggle with this. The wisdom and strength I’ve gained from this is invaluable – I would never be the person I am without this having happened. 

My advice for anyone newly diagnosed with neuropathic pain?

• You are not alone. There are resources out there. There is a huge community out there if you’re looking for support. Find a pain clinic and get connected – they will understand what you’re going through the best. They are the ones who can answer your questions. 
• I’ve been through a lot of hard things in life – but it always seems to get better. Six months ago, I was lying in the hospital with tendons hanging out of my arm. I was hooked up to all kinds of things. I thought I was going to lose my limb because of an infection. Now, I’m healthy, I’m running and preparing to do a 10K. I never thought I’d be able to run again for the rest of my life. 
• You don’t know what’s going to happen. That’s what I tell myself in moments of despair. I know how quickly things can go from good to bad – but it works the other way too. You might have to deal with something for the rest of your life, but that doesn’t mean life is over. I still do everything I want to do, though I might have changed how I do it, or the way that I think about it. 
• I would not be here today if it wasn’t for the support of my amazing friends, family and the fantastic community I surround myself with. You will have people who will be there to support you, but it is also up to you to reach out and ask for what you need.