Finding relief from little-known neuromuscular condition

A few years ago Pam Piro got together with a group of college friends, as she did every 18 months or so, this time for a week in Washington’s Methow Valley. But on this trip, she had to stay behind when the women went out to enjoy the scenery, the pain in her feet making day hikes unbearable.

That was a low point for her.

It had begun slowly more than 10 years ago, with sharp pain between her toes and on the bottoms of her feet, moving on to numbness and a decreasing ability to walk any distance at all. By the time she got together with her friends, the numbness had reached above her ankles and the pain in her feet was very distracting.

Living in Denver at the time, she had been to doctors and undergone extensive tests. Nothing. “Nobody could figure out what was wrong, even as it was getting worse,” she said. “I was even told it was in my head and I should seek psychiatric help.”

After three years of “feeling something terribly wrong going on in my body,” a neurologist in Idaho ran a series of neuromuscular tests and a diagnosis was found. Piro had peripheral neuropathy, a condition in which nerves in the peripheral nervous system — those located outside of the brain and spinal cord — have become damaged, most often causing pain and numbness in the hands and feet.

“Peripheral neuropathy is the most common medical problem you’ve never heard of,” said Dr. Scott Carlson, a neurologist at Spokane’s Rockwood Clinic and also Piro’s doctor.

The condition affects 22 million Americans and comes in many forms, with those caused by underlying diseases being the most prevalent. A very few are genetic and some come for no known reason (idiopathic), which is the case for Piro, 65, a former administrator at Eastern Washington University. It can range from a minor inconvenience (slight numbing of the toes) to the more severe issues of weakness, swelling and balance problems, to having more extreme consequences such as digestive problems, breathing difficulties and acute pain.

Peripheral neuropathy occurs when motor nerves (those responsible for voluntary movement), sensory nerves (which allow pain to be felt) or autonomic nerves (those controlling involuntary functions such as breathing, blood pressure and digestion) are injured, causing a malfunction in the signals they transmit. Effects are most commonly felt in the feet because the longest nerves in the body are located there and are usually the first to become symptomatic, Carlson said.

It is a difficult disease to diagnose because it appears as a symptom that could have a number of different causes, Carlson said, “but once diagnosed, about 80 percent of the time, we can find what the cause is.” There are numerous tests, from neurological exams and lab work to electromyography and nerve conduction studies, and sometimes spinal taps.

While neuropathies can occur from trauma, repetitive motion, nutritional issues, autoimmune diseases, tumors, some medications, poison exposure and more, the most common cause is diabetes, Carlson said.

“I have been treating people with neuromuscular diseases here for 15 years and have seen more than 500 patients with peripheral neuropathies,” he said. “About 35 percent of them are diabetics and another 15 percent are pre-diabetic. And while not all diabetics have neuropathies, easily more than half of them do.”

So what can be done about peripheral neuropathy? First, diagnosis, and where possible, elimination or better control of the underlying disease, if the neuropathy isn’t genetic or idiopathic. For the diabetic, Carlson said, stricter control of blood glucose, proper exercise and nutrition can reduce symptoms and avoid additional nerve damage.

Another part of the treatment is relief of symptoms, most especially pain management for the 25 percent of patients who have significant pain, of whom Piro is one. While she might be numb to the touch up to her knees, Piro still experiences severe pain – sharp and stinging sensations felt inside her feet and lower legs. She takes an anti-convulsive medication prescribed for the neuropathy and strong pain medication.

“These are miracle drugs,” she said. “Prior to their availability, I was depressed, emotional, hurting and felt isolated. It was hard for people to understand because I looked normal, and while it didn’t harm our relationship (with husband Richard), it was not a pleasant part of our journey. Peripheral neuropathy has certainly affected the quality of our lives.”

Finding peer support was also crucial for Piro’s management of her disease, and so she jumped in when Carlson told her he needed someone to take over management of Rockwood’s support group.

Sponsored by Carlson and facilitated by Piro, they meet six times a year to talk about this common but often misunderstood condition. Until a new group formed recently in Bellingham, the group in Spokane was the only one in the state, and Piro said she hears from many people in the Puget Sound area seeking peer support.

“What a relief it is to be able to talk with people who are going through the same thing,” said Piro, who holds a master’s degree in counseling psychology and who has conducted support groups in other parts of the country for people with cancer, AIDS and other conditions.

And there’s another important thing all peripheral neuropathy patients must pay attention to, according to Carlson – their feet and good shoes. Said Piro, “Find a podiatrist who understands what this is all about and life will be good.”

She learned that the hard way while attending a funeral in Portland some years ago wearing sandals. Unbeknown to her, because she couldn’t feel it, a blister formed on the bottom of one foot and it got infected.

“I had to be off my feet for a week after that,” she said, “and now I check my feet every day.”

Now that she wears the right shoes, has the right diagnosis and the right treatment plan, she has been able to exercise and enjoy walks with her husband, sometimes a few miles a day. Because of the numbness and accompanying balance issues, off-road walking is tricky, but she no longer hesitates when her college friends want to get together. With some limitations, she feels close to normal.

“And, given everything, that’s not bad,” she said.