Saturday, 29 October 2016

The Mysterious Case Of The Missing Neuropathy Keys

Today's post from (see link below) falls under the category of personal stories of living with neuropathy. It's surprising how popular these life-stories can be but then again, perhaps not when you think that it's probably due to the fact that someone else's experiences can genuinely validate your own feelings. Hearing how someone else deals with neuropathy can be so reassuring - either because your own experiences are less extreme, or the other way round. Either way, hearing how someone gets through life with neuropathy can give you the feeling that maybe you haven't got it so bad after all. Perhaps the most valuable lesson from other people's stories is that we all share the same frustrations that a disease with no cures can throw up - you're not alone and that's an enormous comfort.

Personal Stories Remember to check your shoes
Dorothy K 2016

I describe the neuropathic pain as burning cold or freezing hot. It’s sort of like when you come indoors after being out on a very cold day, and the burning feeling you get as your skin warms up. I’m 73 and retired. I’ve always enjoyed travelling and have called 3 different provinces my home. I stay physically active and enjoy learning and being around other people. I also have Type 2 Diabetes and diabetic neuropathy.

I describe the neuropathic pain as burning cold or freezing hot. It’s sort of like when you come indoors after being out on a very cold day, and the burning feeling you get as your skin warms up. It originally started as a tingly feeling. I never liked bed covers over my feet – I always stuck them out. I had mentioned that to my doctor, but he didn’t investigate. It wasn’t painful, just uncomfortable; it felt like my foot was going to go to sleep.

The tingling in my feet was there for 10 years before I was diagnosed with diabetes. The tingling grew into pain. The pain gradually got worse and I eventually asked my doctor to refer me to a neurologist. In 2010, we confirmed that I had diabetic neuropathy.

Finding the right treatment 

 The neurologist suggested Gabapentin, Lyrica or Amitriptyline as possible medications for my pain. We tried a graduated dose of Gabapentin. By March 2011, I was at the maximum dose of 6 capsules of 300 mg. This worked for a time, but it lost its effectiveness.

By April of 2012, I was not getting the relief I felt I needed, so I gradually weaned off the Gabapentin and tried Lyrica for about a month. I restarted the Gabapentin in May of 2012. I tried amitriptyline [Elavil] for a short period in 2013. It’s been a bit of a process, but I’m back on Gabapentin – it’s been the best solution we’ve found so far.

I’ve tried many different things including: Shilajit, Reishi Mushroom, acupuncture, Ozone therapy, insoles for shoes, Neuragen topical cream, foot soaks, TENS stimulation, Alpha-Lipoic Acid 100 mg, and Neuropathy Support Formula; B vitamins (B1, B2, B6, B12), vitamin D. A few things have helped, such as Vitamin B12, Tylenol, LivRelief cream as well as using a heat pad at foot of bed prior to sleep. These things are still part of my routine.

I always wear socks to bed now, the really fuzzy comfortable kind. The bed sheets on my bare feet cause pain because of the friction; the sock doesn’t move and, instead, gives you the feeling like someone is holding your feet. I’ve tried having massages and they always feel great in the moment. It’s afterwards that the pain comes back, from my nerves being so stimulated, and it’s just excruciating. I’ve had to eliminate them from my routine.

I took a self-management course sponsored by the University of Victoria. It was a six-week program, focusing on cognitive behavioural therapy based on one designed by Stanford University. It covered a lot of things like chronic disease, goal setting, accepting what you can’t change, how to work with your doctor, managing your personal relationships and learning what your limits are. I found it very helpful. After that I became a co-leader of the program and got involved sharing my experience with others. I have found that it helps to concentrate on someone else’s need.

There is currently no cure for neuropathy. I experience various levels of pain every single day; some days are worse than others. It’s spread just below my knee now, but it’s not as bad as it is in my feet. Numbness is the more common characteristic, especially when I go to bed and my feet are elevated. I’m concerned with what the future holds and how the progression of this disease will affect me.

On the lighter side A funny thing happened to me on the way out of the local swimming pool after an Aqua Fit class. I couldn’t find my car key!

I searched my gym bag, coat, pant pockets, etc. I searched everywhere on the floor, the locker and out on the pool deck. Nothing! I guess I locked them in the back of the car as I took out my gym bag. I searched around the car, and asked at the front desk if anything had been turned in. Nothing.

The desk clerk had CAA so called for help for me. I chatted with her for a bit and we got a call saying the tow truck had come and gone after opening the door. So I went out to the car. As I neared it I could hear the beep of the alarm. Oh. Oh. The doors were locked again! The desk clerk called and the operator came back and opened the doors again. I checked inside for the key. Nothing! The tow truck operator was gone.

As I walked around the outside of the car, the doors would lock and the alarm would sound.

Fortunately my sister has a spare key. She had to get someone to deliver her husband’s car from work and she arrived to save me! However, whenever I got out of the car and walked away, the car would lock on its own and start the alarm beeping!

I made several calls to my Honda mechanic in Toronto and we tried a few things. Nothing. I eventually decided to go to the local Honda dealer and see if they could help. Before I went, I decided to change my shoes. Oh. Oh! Lo and behold there they were. In my shoe! Now I knew why the car locked and beeped with every step I took.

Why didn’t I feel the key (with the fob) in my shoe? How could this be? Well, I knew the answer. Unfortunately my diabetic neuropathy so totally affects the nerve endings in my feet that I could not even feel the object in my shoe!

I’ve always been aware of the importance of being careful with my feet. Wearing shoes, checking them daily, etc. This episode reminded me!

My advice for someone who’s just been diagnosed with neuropathic pain?
Learn as much as you can for yourself. Not everyone is affected the same.
Maintain a positive attitude. Don’t stay still. Keep physically active and volunteer.

Always check your shoes.

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