Take Neuropathy To The Media

Today's informative post from tampabay.com (see link below) is something we should be seeing much more of and that is media coverage which brings easily understood information to the public at large. We see the figure of 20 million Americans living with neuropathy all over the internet, so it's baffling why the vast majority of the public have no idea what it is, or how it affects people's daily lives. If you get the chance to promote knowledge about neuropathy in the media (social or otherwise) please grab that chance and do it. Local or national media coverage has a huge effect on decision makers' consciousness and will speed up both research and modern treatment for the disease. At the moment, people living with neuropathy are frustrated at the lack of progress in the treatment of nerve damage - blanket media coverage will start a ball rolling as more and more people demand change.

Peripheral neuropathy's pain grips 20 million Americans
Irene Maher, Times Staff Writer Thursday, June 12, 2014

If you've never heard of peripheral neuropathy, just listen to people who have it and you'll begin to understand the misery it causes.

Sara McConnell says her legs — from hips to feet — feel like they're touching the glowing, red-hot burners of an electric stove. At one point, she had to quit working and move in with her mother in Pasco County.

For Bruce Dangremond, it's like having an electrical current running through his body.

"It overwhelmed my brain to where all I could do was go to bed with ice packs,'' the Lutz man said of his first major episode.

Whether severe and disabling or intermittently bothersome, neuropathy affects 20 million Americans, according to the Neuropathy Association.

Half of all diabetics will develop the condition, often after years of not having blood sugar under good control. Smoking, chronic alcoholism, infections such as Lyme disease, toxic medications such as chemotherapy, and traumatic injury can also lead to the condition.

But a third of cases have no known cause.

Usually, longer nerves, which run the length of the arms and legs and end in the fingertips and toes, are affected first. Patients report burning, numbness, tingling and sharp stabbing pain that typically starts in the fingers and toes and works its way up or down the extremities from there.

There's no cure, but people such as McConnell and Dangremond say they cope through a broad spectrum of medical treatment, meditation and support from a group of fellow victims who know their pain.

• • •

Dangremond, 65, said his neuropathy began with nothing but the occasional twinge to herald its arrival.

He woke up one morning in June 2010 with "every nerve in my body firing, pounding with pain."

"It didn't go away for hours,'' he said. For two or three years prior, he had occasional episodes of discomfort he ignored, probably the first signs that nerve damage was under way.

But the episode in 2010 sent him to the doctor, from whom he learned his case was not typical.

"Classic is to get the numbness and tingling below the knees," Dangremond said. "I was also getting it in my back, torso, face and arms."

He was soon diagnosed with idiopathic neuropathy; the symptoms were brought on by nerve damage from an unknown cause.

• • •

"Diabetes is the No. 1 cause of neuropathy in this country," said Dr. Lara Katzin, a neuromuscular specialist and assistant professor of neurology at the University of South Florida's Morsani College of Medicine.

"But 30 to 40 percent of the time, we can't identify a cause and can only help to improve the symptoms."

Knowing and addressing the cause by stopping chemotherapy, getting blood sugar under control or stopping drinking can help, but for most patients, symptoms persist.

"But the progression of the condition may stop," Katzin said, explaining the importance of intervening as early as possible.

By addressing the cause, neuropathy usually "won't get any worse, and a few patients may actually improve, but it doesn't usually go away."

• • •

There are more than 100 types of neuropathy, some more severe than others. McConnell was diagnosed in 2003 with a less common type called small fiber peripheral neuropathy. It affects her nerves of sensation and her autonomic nervous system, which controls involuntary functions such as breathing, digestion and blood pressure.

By 2007, despite treatment, her neuropathy was so severe that she had to quit her job as a Realtor and move in with her mother in San Antonio in Pasco County.

Pain medication helps. "The pain is still there, but it's a little less intense with the long-acting pain medicine. That really gave me my life back," said McConnell, 61, who now works from home a few mornings each week running an online retail business.

Other medications that might bring relief include antiseizure drugs and antidepressants. But they don't work for everyone.

Both McConnell and Dangremond have responded well to practicing meditation regularly. It helps them relax and cope with their symptoms. Attending monthly support group meetings also helps because it reminds members they aren't alone and "they aren't crazy," Dangremond said. "Something really is wrong and it's not just all in your head."

The group meets at USF in Tampa on the first Wednesday of each month.

"Patient education is lacking," said Cindy Tofthagen, a researcher and assistant professor at the USF College of Nursing who has worked with neuropathy patients for eight years. She takes calls from patients all across the country trying to learn how to live with the condition.

Tofthagen, who also is an advanced registered nurse practitioner, facilitates the support group at USF and spearheaded a free clinic to address the unmet needs of patients. Staffed by volunteer medical experts, it is held quarterly in Tampa.

"The patients are so grateful," Tofthagen said. "It's an opportunity for someone to really listen to them and troubleshoot how to meet their needs and resolve their issues.''

"The clinic helps me cope with the disease and gives me helpful tips to get through the chaos," Dangremond said. "I have hope again."

Irene Maher can be reached at imaher@tampabay.com.

Peripheral neuropathy

Nerves commonly affected

• Sensory: receive sensations such as heat, pain or touch

• Motor: control muscles

• Autonomic: control involuntary functions such as blood pressure, heart rate, digestion

Symptoms, depending on nerves affected, could include:

• Gradual numbness, tingling in feet, hands, legs, arms

• Burning pain

• Sharp jabbing, electriclike pain

• Extreme sensitivity to touch

• Coordination, balance problems

• Muscle weakness, paralysis

• Bowel, bladder, digestive problems

• Dizziness when standing

For help

To book an appointment with the Supportive Care Clinic for People With Peripheral Neuropathy or to learn more about the Tampa Bay Neuropathy Support Group, contact Cindy Tofthagen at neuropathyhelptampa@gmail.com or call (813) 368-9862.

Peripheral neuropathy's pain grips 20 million Americans 06/12/14 [Last modified: Thursday, June 12, 2014 4:21pm] © 2014 Tampa Bay Times

http://www.tampabay.com/news/health/pain-of-peripheral-neuropathy-grips-20-million-americans/2184144