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Maddox

Living with Neuropathy

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Living with Neuropathy

I guess I'll start the ball rolling in this Circle by describing what Peripheral Neuropathy is and how it affects daily living to enlighten those who have never heard of it and to give some additional information for those who may be suffering from it, but are not aware that this is what they have.  As I'm from the UK some of the treatments and medicines may go under different names in your country of residence, so look them up to see if there are actual differences.

Peripheral neuropathy develops when nerves in the body's extremities – such as the hands, feet and arms – are damaged. The symptoms depend on which nerves are affected. In the UK, it's estimated that almost 1 in 10 people aged 55 or over are affected by some degree of peripheral neuropathy. So what is it?

The peripheral nervous system

The peripheral nervous system is the network of nerves that lie outside the central nervous system (the brain and spinal cord).

It includes different types of nerves with their own specific functions. This is what peripheral neuropathy can affect:

  • sensory nerves – responsible for transmitting sensations, such as pain and touch
  • motor nerves – responsible for controlling muscles
  • autonomic nerves – responsible for regulating automatic functions of the body, such as blood pressure and bladder function
  • Symptoms of peripheral neuropathy
  • The main symptoms of peripheral neuropathy can include:
  • numbness and tingling in the feet or hands
  • burning, stabbing or shooting pain in affected areas
  • loss of balance and coordination
  • muscle weakness, especially in the feet

These symptoms are usually constant, but may come and go.

The main types of peripheral neuropathy include:

  • sensory neuropathy – damage to the nerves that carry messages of touch, temperature, pain and other sensations to the brain
  • motor neuropathy – damage to the nerves that control movement
  • autonomic neuropathy – damage to the nerves that control involuntary bodily processes, such as digestion, bladder function and control of blood pressure
  • mononeuropathy – damage to a single nerve outside of the central nervous system

In many cases, someone with peripheral neuropathy may have more than one of these types at the same time. A combination of sensory and motor neuropathy is particularly common (sensorimotor polyneuropathy).

This is an encroaching and insidious disease, non-infectious so others cannot contract it from you, which can creep up on you unexpected.  It can start subtly and then increase in levels that can affect your daily living.  The main effect is on your ability to walk pain free; the pain levels can vary from day to day, but there is not one day where you are affected by the pains that come with Neuropathy. You may be able to take a dozen steps one day before the pain strikes and stops you in your tracks, another day you may only be able to take a few steps before you need to stop and wait for the pain to subside.  It can cause you to stumble and even fall if you are not constantly aware of where you are walking.

But it’s not just in the feet; it does mainly affect the extremities and can be in your toes, the balls or arches of your feet, in your ankles the top of your foot and even in the shins.  Other areas affected are the hands, particularly in the fingers and thumbs, but can also be in your wrists travelling into your forearms.  It can even be in your face, though this is less common.

It can cause twitching in your extremities, particularly in the hands which may involuntarily spasm occasionally causing you to drop whatever you may be holding at the time.  Sometimes the pain is so sudden and severe that you instinctively drop whatever you are holding.  It can be both frustrating and annoying.

The pain is often mobile, first it can be in your feet and then it can jump into a thumb or finger, wrist or the whole hand.  It can be in your ankle and then move into your shin before jumping into your forearm; and on and on it goes, constantly – there is little respite from it and you often have to try and condition yourself into working around it, thought that it not always possible, but you have to try otherwise the alternative is to give in and that is not really an option that should be on the table.

It’s something that never crosses your mind, or may never even hear about, until it strikes.  There is no cure and it is often progressive, in that it will generally worsen over time. There are medications that can help treat the symptoms, but these are generally controlled drugs that can become addictive and have arrange of varying side effects, like most drugs, that can impact on your daily living and sometimes restrict what you can do.

Unlike most other types of pain, neuropathic pain doesn't usually get better with common painkillers, such as paracetamol and ibuprofen and other medications are often used.

These other medications should usually be started at the minimum dose, with the dose gradually increased until you notice an effect, because the ideal dose for each person is unpredictable. Higher doses may be better at managing the pain, but are also more likely to cause side effects.

The most common side effects are tiredness, dizziness or feeling drunk. If you get these, it may be necessary to reduce your dose. Don't drive or operate machinery if you experience drowsiness or blurred vision. You also may become more sensitive to the effects of alcohol.

The side effects should improve after a week or two as your body gets used to the medication.

The main medications recommended for neuropathic pain include:

  • amitriptyline – also used for treatment of headaches and depression
  • duloxetine – also used for treatment of bladder problems and depression
  • pregabalin and gabapentin – also used to treat epilepsy, headaches or anxiety

There are also some additional medications that can be used to relieve pain in a specific area of the body or to relieve particularly severe pain for short periods.

Capsaicin cream

If your pain is confined to a particular area of your body and you can't, or would prefer not to, take the medications above, you may benefit from using capsaicin cream.

Capsaicin is the substance that makes chilli peppers hot and is thought to work in neuropathic pain by stopping the nerves sending pain messages to the brain. A pea-sized amount of capsaicin cream is rubbed on the painful area of skin three or four times a day.

Side effects of capsaicin cream can include skin irritation and a burning sensation in the treated area when you first start treatment. Never use capsaicin cream on broken or inflamed skin and always wash your hands after applying it.

Tramadol

Tramadol is a powerful painkiller related to morphine that can be used to treat neuropathic pain that doesn't respond to other treatments your GP can prescribe. Like all opioids, tramadol can be addictive if it's taken for a long time. It will usually only be prescribed for a short time. Tramadol can be useful to take at times when your pain is worse.

As you can see it’s quite a well-known disease in the medical profession and a great deal of research has been done to help combat the effects, but there is no known cure and nothing on the horizon to believe something may turn up in the future.

So now you know what it is and the effects and the treatments available you will want to know the causes of Peripheral Neuropathy.

Diabetes

Peripheral neuropathy caused by either type 1 diabetes or type 2 diabetes is called diabetic polyneuropathy. It's probably caused by high levels of glucose in your blood damaging the tiny blood vessels that supply your nerves.

Peripheral neuropathy becomes more likely the longer you've had diabetes. Up to one in every four people with the condition experience some pain caused by nerve damage.

If you have diabetes, your risk of polyneuropathy is higher if your blood sugar is poorly controlled or you:

  • smoke
  • regularly consume large amounts of alcohol
  • are over 40 years old

If you have diabetes, you should examine your own feet regularly to check for ulcers (open wounds or sores) or chilblains.

Other causes

As well as diabetes, there are many other possible causes of peripheral neuropathy. Some of the health conditions that can cause peripheral neuropathy include:

  • excessive alcohol drinking for years
  • low levels of vitamin B12 or other vitamins
  • physical damage to the nerves – such as from an injury or during surgery
  • an underactive thyroid gland (hypothyroidism)
  • certain infections – such as shingles, Lyme disease, diphtheria, botulism and HIV
  • inflammation of the blood vessels (vasculitis)
  • chronic liver disease or chronic kidney disease
  • monoclonal gammopathy of undetermined significance (MGUS) – the presence of an abnormal protein in the blood
  • certain types of cancer, such as lymphoma (a cancer of the lymphatic system) and multiple myeloma (a type of bone marrow cancer)
  • Charcot-Marie-Tooth (CMT) disease, other types of hereditary motor sensory neuropathy – genetic conditions that cause nerve damage, particularly in the feet
  • having high levels of toxins in your body, such as arsenic, lead or mercury
  • Guillain-Barré syndrome – a rare condition that causes rapid onset of paralysis within days
  • amyloidosis – a group of rare but serious conditions caused by deposits of abnormal protein called amyloid in tissues and organs throughout the body
  • conditions caused by overactivity of the immune system – such as rheumatoid arthritis, lupus or Sjogren's syndrome

Medication

A few medications may sometimes cause peripheral neuropathy as a side effect in some people. These include:

  • some types of chemotherapy for cancer – especially for bowel cancer, lymphoma or myeloma
  • some antibiotics, if taken for months – such as metronidazole or nitrofurantoin
  • phenytoin – used to treat epilepsy – if taken for a long time 
  • amiodarone and thalidomide

There may be other causes that are not known until medical investigation takes place to determine the underlying cause.  Regardless of the cause, only the symptoms can be treated.

Living with Peripheral Neuropathy is, as you can imagine, and unpleasant experience, but you learn to adapt and cope with the symptoms with the help of the correct medication.  At this point in time I am on Pregabalin which does help take the edge off, but not always as effective as I would like it to be.  At this present time, I am in the early stages but the effects are quite dramatic in that I can only walk a very short distance and the sporadic and frequent unexpected shooting pains can be distressing at times.  I take amitriptyline at night to help ensure that I can sleep uninterrupted by the pains, but there is always that tingling or burning sensation the never, and I mean NEVER, stops despite medication.

I’d never heard of this complaint until I was diagnosed with it and anyone suffering from it has my deepest sympathy as I can empathise with what they are going through.  At some point in time it may become so severe that I may not be able to leave home for anything; this means relying on others to help out, something alien to most people who prefer to be self-sufficient and independent; but life has a funny (not so funny) habit of throwing a curveball at you from time to time and you simply have to accept what life throws at you and deal with it as best you can.

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