Just What Is Neuropathy Pain?

Today's post from neuropathyjournal.org (see link below) is the first of two posts written by LtCol Eugene B Richardson, whose work has been featured before on this blog. In today's post, he provides you with a great deal of basic information about neuropathic pain but does it in a way that's easy to follow and remember. It helps that he too is a patient, so he knows what you're feeling and how confusing the whole medical story concerning nerve damage can be. The second article (about how neuropathy is treated) will appear tomorrow. Worth a read.

What is Neuropathic Pain?
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS0 

The physical cause of neuropathic pain is damaged peripheral nerves and as one medical expert notes, may also be due to the attempt of damaged nerves to fire across damaged sections of the peripheral nerve. See: References #1 to #3

It is illegal to torture prisoners in our country. So why do neuropathy patients too often live with a torture known as ‘neuropathic pain’ caused by Peripheral Neuropathy?

Somatization Disorders

Somatization disorder is a long-term (chronic) condition in which a person has physical symptoms that involve more than one part of the body, but no physical cause can be found.

This concept cost me my military career in the 1970’s and 80’s. It sets up the neuropathy patient while they seek help for the horror of neuropathic pain. It is important to understand that the pain and other symptoms of patients with this disorder are real and are not created or faked on purpose (malingering). It is time to stop calling patient’s crazy and ignoring this pain or the other symptoms of a neuropathy.

In 2015 we finally have a growing understanding of neuropathic pain yet with limited medication options, sometimes treatment fails the patient. In the last two decades medicine has come a long way in increasing clinical training of doctors in the diagnosis and treatment of the neuropathies and for this many patients are very grateful. On the other hand, neuropathy patients have many resources today that were not available to them just a few years ago, so the patients have little excuse in teaching themselves so that they are informed advocates who have learned ways to help the doctor and themselves with this chronic condition. 

Testing

Doctors now know to test for large fiber damage and if they find no recordable damage, that this does not rule out neuropathy, only damage. These tests measure damage and do not diagnose or rule out neuropathy.

The patient can have symptoms and neuropathic pain for years before damage will show in these tests.

Doctors now know that testing for small fiber neuropathy must be done using a (skin biopsy) for this is the only test to show small fiber damage..

After I was diagnosed with an immune mediated neuropathy, doctor after doctor, asked, ‘Why did they not do the spinal tap?”, but today doctors know that this can be, along with other tests and information a helpful test in confirming an immune mediated neuropathy.
Severity of pain

Dr. Norman Latov, MD, PhD of Cornell University notes that while for some patients neuropathic pain is a nuisance, but for millions of other patients, they are in fact living with constant torture at one level or another with untreated conditions that do many times lead to severe disabilities at a greater cost to society.

Neuropathic pain can involve a wide variety of strange sensations, such as violent sudden electric shocks, stabbing, shooting, burning, tingling, pins and needles, severe muscle cramps, bone pain, sense of strange numbness, cement legs, heavy legs, strange feelings of socks on the feet or gloves on the hands, severe skin pain due to touch, no feeling on touch, digestive problems, urinary problems, problems with lack of sweating, and the list goes on, in addition to other known symptoms of neuropathy?

While only a well trained doctor can determine the cause of your symptoms, you may have peripheral neuropathy and you are experiencing neuropathic pain from damaged nerves sending inappropriate but real signals to the brain.

Like many types of neurological pain, neuropathic pain does remit and relapse making it sometimes difficult to understand both for the doctor and the patient.

Unfortunately, doctors and patients note that these neuropathic symptoms are often worse at night. Experts theorize that this may be due to the brains relaxed state and the fact the brain is not ‘busy’ processing other data. This is why pain is sometimes perceived to be worse at night, as the brain is not as busy working on other information.

Did you know that research has shown that patients with ‘tightly wrapped” neurons in the brain will experience more intense pain than other patients! Ref: #4

While not completely understood, often how a patient experiences neuropathic pain and symptoms is related to their genetic makeup, physical and emotional resources or inappropriate exercise or physical activity in which damaged nerves are forced to work. 

Exercise

Did you know that the wrong type of exercise (click to see article) will force damaged nerves to work and increase the pain!

How should a neuropathy patient exercise? Consider ordering a copy of the brand new DVD from Matt Hansen the expert as his perspective on exercise for neuropathy is perfect and understands what we can and cannot do. Yet Matt makes it possible for us to exercise WITHOUT the increase in neuropathic pain, keeping muscles as strong and flexible as possible. To see article on (click on link) Exercise for Neuropathy DVD: When ordering enter the special code NSN 10 and Matt will give 10% of your purchase price back to support the work of the NSN!
We are making progress in Medicine when it comes to understanding neuropathic pain!

In decades past, some doctors did not understand the strange manifestations of neuropathic pain and would dismiss the patient.

Today, that is not the case as medicine has grown in its understanding of neuropathic pain and patients are become better at describing the level of pain or symptoms so that the doctor understands their condition and how to treat them.

Many great doctors now report in books and medical journals, especially Dr. Norman Latov in his book for patients and “The Journal of the Peripheral Nervous System” (Ref #3). Since the decades of the 60’s to the 90’’s, we have made great strides toward understanding and attempts to treat neuropathic pain.

One of the most critical aspect beyond the treatment of neuropathic pain, is the absolute requirement for the patient and physician to establish a partnership in which they work together to find out what may work among the options for each individual patient.

Patient systems are different and each patient must be seen as unique when it comes to discovering what works and what does not work for each patient presenting with neuropathic pain. 

Diagnosis

Conversely, it is not enough to treat these symptoms of a neuropathy.

Doctors are become better at conducting the testing necessary in attempts to no only look for a cause, but to identify the TYPE of the neuropathy.

If the cause is unknown, the worst possible diagnosis is a diagnosis of ‘Idiopathic’ Neuropathy. (click on link to read article)

For many doctors now tell us, the use of differential diagnosis (subtle differences between neuropathies) may point to a possible cause. (See Refs: 1 & 3) Thus the other important goal is to identify the type of neuropathy as according to Dr. Norman Latov and other experts, this often points to a suggested cause!

To see How Neuropathic Pain is treated.

References:

#1 Norman Latov, MD, PhD, FAAN Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop, ANN Press, 2007

#2 Mims Cushing, You Can Cope With Peripheral Neuropathy (Ideas from neuropathy patients), with Dr. Norman Latov, DEMOS Publishing, 2009

#3 Textbook of Peripheral Neuropathy, Peter D Donofrio, MD, Editor, Professor of Neuropathy, Chief of Neuromuscular Section, Vanderbilt University Medical Center, Nashville, TN Published by DEMOS Medical, 2012.

#4 “Journal of the Peripheral Nervous System” published by the Peripheral Nerve Society.

About the Author

Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.

https://neuropathyjournal.org/neuropathic-pain-2/