I was diagnosed with type I diabetes in 1987. Now, at 39, I've faced just about every complication you can think of, short of amputation; I've been blind a couple of times, I've had a kidney transplant, I was on dialysis for 5 years and have some nerve damage as well. I also had a herniated disc last year and am trying to manage my sciatic pain with steroid shots.
I've faced so many health issues that, when I was diagnosed with neuropathic pain, it didn't seem so bad. At first, my feet just started to feel numb. There was a bit of tingling and it continued to spread. I would notice little sores or scrapes on my feet, which I couldn't feel at the time of injury. Eventually, the numbness and tingling began to appear in my hands as well.
I started noticing pain when I would exercise or go for long walks. It's once I start moving and getting active that this kind of electric pain kicks in. Sometimes I have to stop and brace myself, or rest for a while, and the pain subsides enough to keep going.
Across the country
I'm originally from Manitoba and have lived all over Canada. I recently moved to Toronto to be closer to better healthcare. It was hard to leave my family and support network, but I just didn't have access to enough healthcare options back home.
I haven't actually tried any treatments for my neuropathic pain – just because I've had so many other, more pressing, health concerns. I also feel like I've been dealing with it for so long that I've just gotten used to it. I have, however, just started going to a pain clinic. Once I feel more settled, I might start looking at options to manage the neuropathic pain. For now, they're going to refer me to a physiotherapist and hopefully that will help improve some things in my day-to-day life.
Balancing exercise and pain
I do less because of the pain. Even simple things like avoiding going up and down stairs too often. It's a fine balance between managing my pain and staying active. On top of the pain, I also have problems walking. I worry about falling and possibly doing more damage because I don't have very good balance. I also know that if I don't exercise, it could result in bigger problems down the road.
Part of it might be finding the exercises that are right for me, that result in the least amount of pain. For example, I used to ride a stationary bike and that was horrible. I'm hopeful that my new physiotherapist will help me figure out some exercises that are easier on my body and less of a trigger for my pain.
Communicating around pain
It's been about 5 years since I've started to deal with more intense pain – and I'm still trying to understand it. I still can't figure out how to fully explain it or how to get help without asking for another pain medication. I worry about some of the stigmas around chronic pain. If I ended up in the emergency room, for example, and began asking for my pain medications – they might just think I was an addict.
It's so hard to explain to people who don't have direct experience with neuropathic pain – even some of my doctors and nurses. You know the pain scale? “Rate your pain from 1-10.” That doesn't even begin to capture my pain experience.
My advice for anyone newly diagnosed with neuropathic pain?
- Just take everything day by day. Sometimes you can feel helpless or negative about things. You just hope that today, everything will be ok.
Finding a support group is important to me. It helps to find someone who can relate to what you're going through, if only to share your similar experiences.