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