Figuring out how to manage your neuropathy can be a long, slow process. When you think you’ve got it figured out, something can change and you have to adjust your pain management strategies.

I am 59 years young and have had Type 2 Diabetes for the past 15 years. But that’s not where my journey began. I first noticed a problem when I developed a very sharp, persistent, pain in the corner of the big toe of my left foot. Slowly, the pain progressed to the top of my foot. Eventually, it spread to my right foot, to my ankles and my lower legs. The pain changed from the feeling of sharp pin points to larger throbbing areas on the top of my feet. After a visit to my doctor, we determined that I had neuropathic pain. 

It wasn’t until three or four years later that I was diagnosed with diabetes. We were then able to narrow my pain diagnosis to diabetic neuropathy. The neuropathy has since spread and it’s beginning to affect my hands and my fingers.  

Looking for treatment

My first form of treatment for the neuropathy was actually through a research trial at a hospital in Kingston, through Queen’s University.  I believe the trial was looking at a combination of the drugs gabapentin and duloxetine (Cymbalta). My experience with the trial was great; someone would check in with me every three days or so to see how the drugs were working and what my pain levels were like. We’d adjust the medications based on what was or wasn’t working. That trial lasted for three months. 

I’ve tried some alternatives to manage pain. I had a naturopath who would give me ionic foot baths. The salts turned the water to a rust colour and it was supposed to help take some of the iron out of my body. I can’t say I found this helpful. But it did make me think about everything going on in my body that I might not even be aware of. 

I still take gabapentin. I take it twice a day, to get the maximum allowed daily dosage. Though I’m in a bit of a transition period. My doctor retired and I’m waiting for my new doctor to take up his practice.  Once I start seeing him, I might explore other treatment options. 

Balancing a day and trying to sleep

Simple things, like visiting a friend for tea, are affected by my neuropathy. I might have to stand for half of the visit to rock my feet, or pace, in order to manage the pain. For me, it’s about keeping my body moving and to keep stretching my feet out.  Of course, there’s a balance; if I’m too active, and push myself too far, I can cause a bout of pain lasting two to three hours. Building in time for extra rests and breaks between commitments is critical.

In a 24-hour period, I might experience six hours of extreme pain (four of which occur at night). I don’t sleep very much at night, that’s when the pain is the worst. When I tell people I don’t sleep in my bed, they think I’m joking. More often I’m sleeping on the living room floor with my feet propped up on my chesterfield. Sometimes the elevation doesn’t help and I just need to walk it off. Winter is harder because I can’t exactly go for a walk at 2 am through all the snow and ice. Sometimes I’ll pace in my kitchen doing dishes, or I’ll do a few loads of laundry. Every once in a while, when I have a good night, I’ll sleep until noon. 

My feet almost always feel tight and uncomfortable. Some days are absolutely great and others are extremely uncomfortable. I decided to retire a year earlier than originally planned. I was having extreme amounts of difficulty managing my blood sugar count. It was hard to focus, I was concerned about my vision and there was so much pain. 

My neuropathy doesn’t seem to be tied to better management of my diabetes. Though I do feel better since having bariatric surgery. I’ve been able to reduce some of the drugs I use to manage my diabetes. I’ve been able to get more involved in my community and get out a bit more. 

Finding support

I heard about a neuropathy support group from an ad on TV. I’ve been involved with them for 3 or 4 years now and I find that it helps. The support group has different speakers come in – pharmacists, massage therapists, doctors. They all share different ways of dealing with pain. 

It’s also good to connect with people. Because everyone’s in pain, we all have a common denominator. While our neuropathy may not all be the same, there’s always someone who understands it and we can share what has or hasn’t worked over the years.

My advice for anyone newly diagnosed with neuropathic pain?

• Figuring out how to manage your neuropathy can be a long, slow process. When you think you’ve got it figured out, something can change and you have to adjust your pain management strategies. 
• You need to be good to yourself – exercise and watch your diet. Try and get out and be active in your community or with your church. Sometimes this can take your mind off of your pain. In general, be kind to yourself.