What It Means To Live With Neuropathy

Today's post from post-gazette.com (see link below) is a powerful plea for understanding regarding the situation of millions of people living with neuropathy across the world. It highlights the helplessness many people feel when the current drug treatments don't work, or produce side effects almost as bad as the neuropathy itself. If only the rest of the world could read articles like this then things might begin to improve - certainly public awareness. However, that's not going to happen so we have to hope that the media devotes more air time and print space to neuropathy as a disease. Unfortunately, neuropathy cases are only growing at the moment...pity that the treatment isn't advancing at the same pace.

Neuropathy affects millions with no guarantees from treatments
By David Templeton / Pittsburgh Post-Gazette September 13, 2016

Five years ago when Harold Frazier reached 220 pounds and flirted with diabetes, he took to walking 10 miles a day and shed 30 pounds, returning his blood sugar levels to normal.

Problem solved. Or so he thought.

Unexpectedly one day Mr. Frazier, now 63, was unable to lift his foot to the curb. In time, his feet began feeling numb with burning sensations upon awakening each morning and eventual decline in leg and arm function. Today he says he has about 40 percent function of his limbs, forcing his retirement as a maintenance man at the Irwin townhouse complex where he lives.

“Every time I move when I’m asleep I wake up, and I’m lucky to get four hours of sleep a night — and that’s a great night,” Mr. Frazier said, noting he no longer can raise his arms above his head.

“If I am arrested, and they say, ‘Stick ’em up,’ they’ll have to shoot me because I can’t,” he said. “I have lost all the power in my arms.”

Arresting the pain

Mr. Frazier and 40 million other Americans struggle daily with peripheral neuropathy. Initial symptoms typically involve numbness in the feet or hands and may affect other parts of the body such as internal organs. Over time the person can experience sensations of burning, freezing, throbbing or even shooting pain that’s often worse at night, the Foundation for Peripheral Neuropathy reports.

Surprising perhaps is the fact that 70 percent of people with diabetes and up to 40 percent of those who undergo chemotherapy develop painful neuropathy with no cure and limited if any effects from major treatments including Lyrica and Cymbalta, among other drugs.

Alternative treatments exist, each with advocates. But for most people, neuropathy can hinder daily quality of life, preventing activity and exercise, a good night’s sleep and a pain-free existence.

“The pain can be either constant or periodic, but usually the pain is felt equally on both sides of the body — in both hands or in both feet,” according to the foundation website (foundationforpn.org).

Erin Kershaw, chief of the division of endocrinology and metabolism at the University of Pittsburgh and UPMC, said once you develop neuropathy it is difficult to reverse, so prevention is key, especially given that diabetes and alcohol consumption are common but preventable causes.

“Small nerve-fiber burning is extremely uncomfortable,” she said, describing the effects of nerve damage. “It can feel like your feet are on fire all the time,” requiring pain therapies that may have limited impact on reducing pain levels.

Numbness also can result in foot injuries the person may not be aware of due to lack of feeling. This may result in ulceration that’s hard to treat, sometimes leading to amputations. Dr. Kershaw said prescribed drugs do help a substantial number of patients but usually do not eliminate all of the discomfort.

“Neuropathy is a problem that requires more awareness and more research,” she said. “When you see a patient, you are hurting inside because you know the existing therapy is not helping them with pain that’s there every day.”

Cause and effect

About 60 percent of all cases of neuropathy involve diabetes, with chemotherapy-induced neuropathy responsible for about a quarter of all cases and idiopathic neuropathy (where a cause isn’t identified) representing about 10 percent. HIV/​AIDS, repetitive stress, alcohol abuse, inflammatory response, carpel tunnel syndrome, autoimmune diseases and vitamin deficiencies, among others, can cause or contribute to the condition. The American lifestyle and diet also can contribute to and worsen symptoms, studies indicate.

“If nerves are dead, they’re dead,” said Marlene Dodinval, the Foundation for Peripheral Neuropathy’s senior program coordinator. “There is nothing you can do about it.”

The foundation held an international research symposium last week, during which cannabis was discussed as a treatment. It also is working with eight universities nationwide to create a peripheral neuropathy research registry and create a database of patients available for research.

“Neuropathy is an ignored condition,” Ms. Dodinval said. “There is work underway around the world, and more needs to happen.”

The U.S. Food and Drug Administration has approved only pregabalin (Lyrica) and duloxetine (Cymbalta) as treatments for diabetes neuropathy, according to a study update published last month in the American Family Physician journal.

Other nerve-pain and antidepression drugs can serve as second-line drugs with third-line drugs that include opioids. Other treatments include topical creams, sprays and patches including lidocaine, with transcutaneous electrical nerve stimulation providing relief for some, it says.

The update found insufficient evidence to support acupuncture, chiropractic procedures, laser treatments, full-body vibration, electromagnetic field application, and such supplements as alpha lipoic acid, acetyl-l-carnitine and primrose oil. The supplements are championed by some patients with some supportive research.

Ms. Dodinval said some people swear by creams and supplements of capsaicin, an active ingredient in chili peppers.

Relief via support groups

With few effective treatments, Mr. Frazier joined the Pittsburgh Area Peripheral Neuropathy Support Group that meets the third Wednesday of each month April through October at the Brush Creek Evangelical Lutheran Church in Irwin. Members discuss treatments, exchange tips and listen to scheduled speakers.

Bill Wilshire, 70, of North Huntingdon faces his own issue with neuropathy, the exact cause of which is unknown. It began when he kept feeling his socks bunching up under his toes. Pulling up those socks never helped because they weren’t actually bunched up.

Eventually the altered feeling of his toes turned to numbness that affected his balance, eventually jeopardizing his ability to walk. But the retired social studies teacher says he’s one of the lucky ones because he feels numbness but little pain.

Another member, Gerry Getman, 69, of Peters, was undergoing chemotherapy in 2008 for multiple myeloma that’s in remission when he began feeling tingling in his toes and hands. He expected it to go away, as sometimes occurs with chemo-induced neuropathy. But his tingling progressed into pain and burning in his feet, especially at night.

In time, he, too, lost feeling in his legs, reducing his ability to walk without assistance. Now the retired entrepreneur with a doctoral degree in chemistry says he’s 50 percent disabled and controls the discomfort in his arms and legs by keeping his mind occupied.

“I would describe it as fairly severe,” he said. “I have it 24/​7, but it’s always more intense when my mind is not occupied. I actually try to get pretty close to exhausted. I work on the computer until midnight or 1 in the morning so that I can drift off to sleep.

“I think mine has stabilized, and I’ve developed a lifestyle to deal with it quite effectively,” he said. “I mean, you have to. Life goes on.”

David Templeton: dtempleton@post-gazette.com or 412-263-1578.

http://www.post-gazette.com/news/health/2016/09/13/Neuropathy/stories/201609070171