Personal Stories

Life with neuropathy

William (Medium)

'Old Fart' William's Story

I am 72 years old and live alone in a single family bungalow in Peterborough. I eat too much, drink too much, and get too little exercise. I am a retired teacher and have lived alone since my wife died in 2000. I am a fat old fart who lives a fairly circumscribed life - only partly due to my neuropathy. Right now my sciatica is flaring up and is far more debilitating. 

My peripheral neuropathy likely dates back to the early to mid ‘90s. I suffered from falling arches, and for some time I ascribed my foot and leg discomfort solely to that issue. It was only in 1997, when the numbness, burning, and occasional stabbing pain was keeping me awake, that I took the problem to my GP. 

It is so long ago that I have little or no recollection of the original process of diagnosis. The story is complicated in my mind by my wife suffering a massive brain injury at that time. She was in an automobile accident in Ottawa, in the summer of 1996. She was in an Ottawa hospital until the spring of 1997, and again for several more visits during the next couple of years. She lived at home until her death in January, 2000. Naturally, at the time, my minor problem was peripheral to hers. It was while she was in the hospital (1996 – ’97) that the burning and tingling got so bad that I went to see my GP.  He referred me to a local neurologist who ran some tests and diagnosed peripheral neuropathy. By that time (1998 – ’99) the loss of feeling extended almost to my knees.  

The neurologist had no answer as to the origin of the condition. I had been drinking heavily earlier in my life, but had been totally dry for ten years when the condition struck. My GP (at the time) in 1997-9 was convinced that I had diabetes. My blood sugar levels were consistently close to the threshold levels, so he took that leap and declared me diabetic; controlling it with diet and exercise.  It wasn’t until my present GP had me do a glucose test (in 2009) that the diabetes diagnosis was ruled out. 

At the beginning I had “pins and needles”, burning on the soles of my feet, numbness or loss of feeling in my feet and lower legs, aching feet and legs (perhaps partly due to the falling arches) and occasional shooting pains or a feeling like a weak electric shock. I do not remember the specifics, but I am sure that the discomfort started in one foot at a time before it came to affect both feet and legs. I have a vague memory of it migrating from one foot to the other over the months. 

Finding relief, also known as, gabapentin

Back in 1997 or ‘98 my GP prescribed a common medication used off-licence to treat nerve pain. I have no recollection of which one it was. I just remember him saying that no medication worked for any large percentage of the sufferers, but that particular one was the most efficacious. It might have been an anti-depressant, but the specifics escape me. I just remember that I got every side-effect listed on the fact sheet (dry mouth is one I remember), but it did nothing to ease my nerve pain. 

The second medication he prescribed was gabapentin. It was a miracle cure. Within a few days the worst of the symptoms had eased, and after trying different dosages we settled on just 300mg per day. Over the years, I have had to increase the dosage as the pains and discomfort returned. I have never been free of the feeling that something in my feet and legs isn’t right. There is the constant numbness, the decrease in flexibility, and the fairly common occasional tingling sensation. It isn’t pain! For many years, the discomfort was almost forgettable as I went through my daily chores. I loaded my gabapentin into the evening to reduce any chance of pains that would get in the way of my sleep. I don’t think that I ever expected to avoid all of the discomfort of numbness and a bit of tingling. I was happy as long as I could get to sleep every night. I have never suffered from any side-effects related to the gabapentin; or none that I identified. 

Currently, I am taking 1500mg of gabapentin daily. It has been my only medication since the late ‘90s, and the only change has been a gradual increase in the dosage over the past 15 or 16 years. I am told that I could probably take and tolerate higher doses and that some patients do take more than my dose. 

Life with numbness

From the 1990s, I recognized that I was losing my sense of balance. I avoid ladders. I am far more sedentary than I was in middle age. I rarely travel and, if so, prefer to use my car. At present, I avoid activities which require much walking and standing. I do my own housework (such as it is), but hire people to look after the outside chores. At home, I spend far too much time sitting at the computer – as I am now! I assume that some of the inactivity and lethargy is a result of becoming a fat old fart. I stopped mowing my own lawn over 10 years ago lest I stumble on the uneven surface. For exercise, I walk on a treadmill rather than the sidewalk, as I fear tripping on the uneven surface. For a couple of years before I got a treadmill, I used to walk at 4:00 or 5:00 AM so that I could walk on the residential street which was smoother than the sidewalk. 

As some of my foot muscles become dominant and others atrophy, walking becomes more problematic. I drag my heels and walk flat-footed. My feet are no longer flexible, so I describe the sensation as akin to walking with snowshoes. My feet and legs feel “heavy”. It is very tiring. I can’t walk nearly as fast, or as far as I used to. Much beyond a mile is getting to be a trial: not impossible, but not comfortable. My legs ache after any decent walk on my treadmill. Hiking or walking off road is almost impossible. An extended shopping trip can be problematic. Luckily, I detest shopping. 

I can feel movement on my skin if a finger is rubbed across my foot or leg, but if touched gently without disturbing the hairs, I often can’t tell if my foot or leg is being touched at all. If I am poked I get no different sensation from a finger than from a needle. Some nerves seem to still work as occasionally I get a sharp pain from stubbing a toe, but most times my only clue that I have stubbed it is the blood welling out from under the nail. 

For the past 2 or 3 years I have been noticing a gradual loss of sensation in my fingers. It is just the same numbness and tingling that affects my feet, but less severe as yet. As I do all my own cooking it presents the constant threat of burned fingers. I cook most of my food from fresh ingredients, so I find that my legs often get tired and achy from standing too long in the kitchen preparing vegetables or batch-cooking for my freezer. Perhaps it is the muscle changes in my feet and legs which cause me the most problem; not the occasional bout of neuropathy pain. 

My physiotherapist comments that I have retained strength in my arms and legs, but I notice a lack of strength in my hands and a sensitivity in the skin which keeps me from opening jars or bottles. It can hurt to try to grasp an object too tightly. Accidentally hitting my hand on a piece of furniture or door jamb is often remarkably painful; far more so than used to be the case. I am more likely to drop a light object as I no longer sense, say, a sheet of paper in my hand. Simple tasks, such as doing up small buttons, becomes nearly impossible. My wardrobe reflects that new reality; few shirts with buttons and no tight collars. I struggled mightily to rewire a lamp the other day. My fingers were like useless - and senseless - lumps of clay. It is hard to manipulate thin wire with no sense of touch. Picking up small objects is a trial.  

My days entail reading the newspaper, normal ablutions, essentials of housework (dusting is avoided at all costs), email contact with a couple of dozen people, internet surfing, walking on my treadmill or doing stretching exercises, watching videos from my PVR or streamed to my TV through my computer, football and occasional soccer matches watched live, daily food preparation, grocery shopping 2 or 3 times a week, occasional appointments and lunches with friends, usually weekly contests over a friend’s snooker table, weekly visits by a female friend. I drive to see my children and grandchildren every few weeks. I have pretty well ceased attending plays and concerts except for the occasional MET in HD performance. That is more due to the lack of a companion rather than the effects of my neuropathy. I have ceased travelling because of my inertia, and mostly the lack of a suitable travel companion. Neuropathy wouldn’t keep me at home were I really keen to take a particular trip. It would just affect the type of trip and the day’s activities – as it does at home. My inertia is only partly the result of my neuropathy. 

What pain is like now

I have used gabapentin alone for over 15 years. I have never tried any other medication. I asked my GP about newer and better medications a year or so ago. He said I should stay with what is working rather than weaning me off it and then going through the process of trying to find something better. I was somewhat relieved. 

All in all, I view myself as being rather lucky. I found gabapentin pretty early in the process and under normal conditions I can say that I am pain-free. I have discomfort, and my life is circumscribed, but I do not have the constant level of pain common to some sufferers.

My advice for anyone newly diagnosed with neuropathic pain?

  • Seek out whatever medication will render the nerve pain bearable. Once you can limit the pain, everything else is reduced to the level of a really annoying nuisance. 
  • Forget vanity and wear sensible shoes with proper orthotic support to keep you mobile. Work with a physiotherapist to develop a regimen of stretching exercises to help keep you as flexible as possible.
  • Understand that you will have a constant struggle to maintain as much of your lifestyle as possible, to work around your new limitations, and to seek out any treatments or devices which will make life a bit easier. 
  • It isn’t a death sentence so much as a constant set of hurdles which will make life a bit more difficult, but still enjoyable. It’s no walk in the park, but look around at your peers and all of a sudden neuropathy isn’t so bad. There are lots worse conditions to have to cope with. 

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