What You Should Know About Neuropathy

By Barby Ingle, PNN Columnist

November is Nerve Pain Awareness Month. Or as we like to call it at iPain, “NERVEmber.”

There are dozens of chronic conditions that involve nerve pain. Neuropathy is a collection of disorders that occur when nerves of the peripheral nervous system are injured or damaged. The peripheral nerves are the ones outside of the brain and spinal cord — in our arms, legs, hands and throughout the body.

There are 3 types of peripheral nerves:  

  • Autonomic nerves regulate biological activities that people do not control consciously such as breathing, digesting food and heartbeat. 

  • Motor nerves control movements of muscles under conscious control such as walking, grasping things and talking.

  • Sensory nerves transmit information about sensory experiences such as feeling a light touch or the pain resulting from a cut.

Some neuropathies affect all three types of nerves, others affect one or two types. Some of the diagnostic terms you might hear are predominately motor neuropathy, predominately sensory neuropathy, sensory-motor neuropathy and autonomic neuropathy.  

Neuropathy often causes pain, tingling or numbness in the hands and feet. Healthcare professionals had a longstanding belief that neuropathy pain is just a symptom of an illness and therefore not a disease. 

We now know that chronic nerve pain is a disease in itself, and the medical community and public are beginning to look at it in this way.

There are approximately 150 known types of neuropathy and the causes of many are not yet known.

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Thirty percent of neuropathies are caused by diabetes, 30% are idiopathic or of an unknown cause, and the other 40% are attributed to autoimmune disorders, tumors, genetic, infections, environmental toxins and nutritional imbalances.

A great resource for patients is Dr. Norman Latov’s book, “Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won't Stop.” This book helps us understand the causes of neuropathies in greater detail.

We need to increase awareness, conduct research, provide better clinical training, and better tools for diagnosing and treating neuropathy. Funding for neuropathy research is difficult to obtain because clinical professionals do not fully understand all of the complexities of neuropathy diseases and conditions. Far too often, if a patient does not have a known neuropathic condition, providers will say they could not possibly have a neuropathy.

Nerve Pain Is Not Just a Symptom

But neuropathy is not just a symptom of another disease, it can be a disease in itself.  When medical professionals fail to recognize the disease or causes of neuropathy, it leads to misdiagnosis, failure to diagnose, and delays in getting proper treatment. This can cause further damage to the patient.  

I have had some doctors tell me that neuropathy does not affect the upper body, hands or face, so I could not possibly have neuropathy and it must be something else going on. Know your limitations and your healthcare providers’ limitations. Sometimes it is difficult for them to understand all of our symptoms or the daily problems we face living with neuropathy.

It is important that we increase our communication skills as patients and caregivers. Better communication allows for better care and better answers. Too often our healthcare professionals stop short of proper diagnostic procedures due to assumptions, poor attitudes, and limited treatment options available to them. They also get pressure from insurance companies that limit payments for treatment and testing. Some providers also fail to understand the potential serious impact of these conditions going undiagnosed and undertreated.  

There are times when a doctor might believe that you can do something that you know will increase your symptoms or set off a flare. Communicate these limitations to your doctor and find out their knowledge of your condition.

Here are 5 tips to better access to proper and timely care.  

  1. Seek credible information, keep your mind open to new treatments and provide copies of your research to your doctor when necessary. Remember – our providers see many patients day after day and do not always have the time to do research. You may be the first one to bring new information to them.

  2. With better treatment options, we will be less frustrated as patients and can make greater progress in our goal to improve daily living.

  3. Use a multidisciplinary approach to treatment. Include on your team of providers doctors who specialize in pain management, internal medicine, neuromuscular neurologists, physical therapists and psychologists/psychiatrists. Depending on the type of neuropathy you have, you may want to add doctors of immunology, radiology, oncology, hematology (liver), cardiology, pulmonology, orthopedics, urology, gastroenterology, podiatry, or other medical disciplines. 

  4. When you read books by other patients or hear of new treatments in your social circles, be sure to have your own treating provider consult on those ideas. Patients are not one-size-fits-all. What works for someone else may not work for you.

  5. Work with a healthcare provider who works with neuropathy patients on a regular basis. They tend to be more familiar with the daily challenges we face as patients.

Until research provides better answers and tools for diagnosing neuropathy, good doctor-patient communication is essential to diagnose and treat neuropathy in a timely manner.

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.  

Power of Pain: NERVEmber

By Barby Ingle, Columnist  

In a few short days Nerve Pain Awareness month begins – a global movement known in the pain community as NERVEmber.

I began the NERVEmber project in 2009 as a way to bring more attention to chronic nerve pain conditions such as Reflex Sympathetic Dystrophy (RSD/CRPS) and diabetic neuropathy. The term NERVEmber is derived from the burning pain people with neuropathy feel, combined with the month of November. 

The Power of Pain Foundation hosts the official NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber and bring awareness to the 150 plus conditions that have nerve pain as a symptom.  

The color orange is the international color for chronic pain awareness, which also fits right in with the fall colors we typically see.

Our largest spotlight throughout the month shines on RSD, which is one of the most painful conditions known to mankind. Yet, like many chronic pain conditions, RSD is misunderstood, mistreated and often misdiagnosed. 

Each day during the month of NERVEmber the Power of Pain Foundation will present an awareness task that we can all participate in. This year we are also giving away over $1,000 in prizes -- available to anyone who registers to participate and uses special hashtags on social media, completes daily tasks, and hosts or attends an event. The more you participate in official NERVEmber events, the more chances you have to win!

You can bring more awareness to conditions like RSD, CRPS and diabetes by posting every day in NERVEmber using social media tags on your posts such as @powerofpain and #PaintTheWorldOrange. Using these tags will earn participants chances to win some great prizes.

The Power of Pain Foundation and the #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s, #OrangeInitiative,  #ColorTheWorldOrange, and #ColourTheWorldOrange. 

Official events include tasks shared on social media, wearing t-shirts, Paint the World Orange, and educational series.

The daily calendar of events are available here on the NERVEmber webpage.

One of our newest additions to the project is #painPOP. We are asking people to get involved by popping a balloon and challenging others to do the same or make a donation to help the Power of Pain Foundation continue our education, awareness and access to care programs.

We are asking participants to text, post or say something similar to, “I have the NERVE to be HEARD!"

We will also be posting educational videos on YouTube and our website. Watching videos and commenting on them gives participants more ways to win great prizes. For #PaintTheWorldOrange, we ask participants to post their #NERVEmber pictures on social media and to share your pics as you #PaintTheWorldOrange. Be sure to hashtag it #NERVEmber #PaintTheWorldOrange to increase awareness and your chances to win POP prizes.

Participants are also invited to create graphics of their own using #NERVEmber and #PaintTheWorldOrange. Don’t forget to WEAR ORANGE all month long! You can upload your orange photos to help us paint the world.

Tens of thousands have participated in past years from around the world and we are expecting even more this year. Don’t miss out on being part of a movement to make a difference.

For more information on NERVEmber visit http://powerofpain.org/nervember

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.