Living With Diabetic Neuropathy
Tips on coping with and overcoming chronic pain
Lee Nevitt has type 1 diabetes and severe neuropathy.
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The question isn't whether Lee Nevitt will be in pain today. It's how much. On a good day, he might remember what life was like before neuropathy turned it upside down four years ago. But if it's a bad day—and there are plenty of those—Nevitt uses most of his energy to fight the pain.
It starts as pins and needles, the sensation you feel when your leg falls asleep. Next comes the burning. Though Nevitt's skin is cold, his feet feel as if they've been lit on fire and left to burn. Sometimes it's accompanied by feelings of electric shocks or the sensation of walking on broken glass. Painkillers help, but only slightly. Even when he's on his meds, Nevitt's feet are sensitive to the slightest touch. Putting a sheet over his feet at night hurts, but touching his feet? That always leads to screams of agony.
The neuropathy has caused other issues, too. Pain shoots through his hands. His face tingles. Cramps grip his stomach when he eats the wrong foods. (The foods that upset him change with the day.) Bedtime means night sweats, so he sleeps with a towel. He has erectile dysfunction. And for a time, shortly after his diabetes diagnosis, Nevitt needed a urinary catheter to go to the bathroom.
"I have had so many sleepless nights thinking about what was going to happen to me. What was the future going to be like for me? I never knew how I was going to be, how long the pain spell would last," he says. "I felt like I must have done something pretty awful in my past to have been living in this hell."
Lee Nevitt is 36.
About 60 to 70 percent of people with diabetes have mild to severe neuropathy. The condition is a direct result of high blood glucose levels, though scientists aren't exactly sure how the excess glucose affects the nerves. Adults who've had diabetes for a long time are at a higher risk for neuropathy, but younger people and the newly diagnosed can get the complication as well. When he first experienced foot pain, a year before he was diagnosed with type 1 diabetes, Nevitt was only 31 years old.
There are two main types of neuropathy: peripheral, which affects the feet, legs, hands, and arms, and autonomic neuropathy. This type of nerve damage affects the heart and blood vessels, digestive system, sweat glands, sex organs, urinary tract, eyes, feet, and lungs.
Peripheral neuropathy is more common (though it's not unusual to have both types). "Many people aren't initially aware of a problem," says James Russell, MD, MS, FRCP, FACP, director of the Maryland Peripheral Neuropathy Center at the University of Maryland Medical Center. "Or the problem seems to creep up on them. Many people see us when the symptom begins to bother them." Tingling, burning, or skin sensitivity usually precedes numbness. At its most advanced stage, neuropathy can lead to a loss of perception, or the inability to know where your feet are—a danger for driving and walking. Caught early, symptoms can wane, but it requires major lifestyle changes.
Mike Hoskins was diagnosed with peripheral neuropathy after living for two decades with type 1 diabetes. "I first started noticing signs in my late 20s," he says. "I rebelled quite a bit as a teenager, from 17 to probably 22. I had some double-digit A1Cs. I had the burning, tingling, no feeling."
Hoskins's neuropathy got worse until it affected his entire life. He had trouble sleeping. Doing parts of his job as a newspaper reporter in Indianapolis left him with a sense of dread. "I was worried if I could run out at a moment's notice to stand around a crime scene," he says.
But Hoskins was lucky. After speaking with his doctor, he set out to lower his A1C. "Pain is a great motivator," he says. It helped him drop his blood glucose levels and send his neuropathy into remission. Now 32, Hoskins feels nerve pain only when his glucose levels are high. "I refer to it as my warning bell," he says.
Lowering blood glucose levels to a healthy range is the first focus of diabetic neuropathy treatment. "Managing pain is not managing the underlying problems," says Aaron Vinik, MD, PhD, FCP, MACP, director of the Research and Neuroendocrine Unit at the Strelitz Diabetes Center for Endocrine and Metabolic Disorders at Eastern Virginia Medical School. To lower the risk for complications, he says, the key is not only glucose control but also keeping blood pressure, cholesterol, and triglycerides in healthy ranges, exercising regularly, and not smoking.
Relief may come from lifestyle changes: eating a healthy diet, exercising frequently, and paying special attention to blood glucose levels. "When a person's diagnosed with diabetic neuropathy, they need to make the changes as soon as they can," Russell says. "The studies in type 1 diabetes clearly indicate the better the glucose control, the better the neuropathy. The neuropathy will progress more slowly."
The next step: Treat the pain. There are a host of medications for this purpose, like Lyrica (pregabalin) and Neurontin (gabapentin). Preliminary studies show that supplements of alpha-linolenic acid (ALA) may reduce nerve pain and improve nerve function. Still, each person with diabetic neuropathy responds to medications and supplements differently, a fact that's both reassuring and maddening. It often takes time to find a drug (or combination of drugs) that works, but there's usually something out there that will at least take the edge off. The key is to keep searching. "We fail to educate people on this. People think there's nothing to be done, so they give up. Or physicians don't do anything," says Vinik. But in fact, much can be done, he adds. "I can control pain in my [patients with neuropathy] about 95 percent of the time."
"No matter how you try and explain the pain, it will never come close to the actual struggle."
—Lee NevittEven with minimal pain, many people with diabetic neuropathy experience a sense of loss. It's when reality hits: This is diabetic neuropathy. By the time he spoke those words, Nevitt had already said goodbye to his former life. "I used to manage restaurants and bars and was very active. I used to play rugby and other sports," says Nevitt, who lives in Bournemouth, England.
When the neuropathy advanced, Nevitt packed up his apartment and moved back to his parents' house so they could care for him. He bought a cane to lean on during short walks and a wheelchair for longer trips. At first, "I could barely walk up the stairs," he says. "And there seemed to be no light at the end of the tunnel. No day was ever the same. It was kind of like learning how to live again, [learning] what I am capable of doing."
Unable to work or, on bad days, even get out of bed, Nevitt felt isolated. He didn't fit in with the healthy—he had a host of problems to prove it. But he didn't fit in with the sick either. "You feel so very alone," says Nevitt. "No matter how you try and explain the pain, it will never come close to the actual struggle. It's not visible. There is no scar. There is no cast." To outsiders, he looked like a healthy thirtysomething man.
Inside, he was struggling.
Grief, anxiety, and depression are common in people with diabetic neuropathy. It's normal to grieve the loss of a former life, or feel beaten down by a sudden disability. "I was pretty depressed at the time," says Hoskins. "My mind flashed back to all of the stuff you read about. It's like, 'Oh no, I'm not invincible. I could lose a foot.' "
Neuropathy can touch almost every area of a person's life. People with neuropathy may be unable to work. They might have a hard time tying their shoes or buttoning a shirt. The neuropathy may affect their relationships. Part of the depression stems from the inability to do simple tasks, like sleeping, driving, or walking without stumbling. For some, pain medication may be the only thing they need to continue their day-to-day life. Others, like those who have numb feet or lack the perception to tell where their feet stand, may need to modify their lifestyle.
Much of Hoskins's depression arose from his inability to connect with other people who understood what he was going through. The online diabetes community was still in its infancy, and it seemed the only information he could find about neuropathy just explained the condition. "I wanted to know what it was like to live with neuropathy. I didn't want to hear I might lose a foot," Hoskins says.
When he finally found people with diabetic neuropathy who understood what he was going through, he paid more attention to his diabetes and improved his blood glucose levels. "I would encourage not only good control and having an open talk with your CDE [certified diabetes educator] and endocrinologist, [but also] finding people in the online community," Hoskins says. "Education is more than what I get from my endocrinologist."
When depression hits, doctors may prescribe medications that both fight pain and relieve depression, says Russell. Another promising treatment for both is meditation—and it's safe and free. Research has found that people who meditate are less responsive to painful stimuli.
Exercise's positive effect on depression is a well-studied topic. But exercise is one of the most confounding aspects of managing neuropathy. It aids blood glucose control, lifts symptoms of depression, improves circulation, and keeps the heart healthy, but it's also difficult to do while in pain or without feeling the feet. The answer isn't to stop exercising, though. "You need to find an exercise that is appropriate for you," says Russell. "Some people hate going on treadmills. Every time they take a step, pain shoots up their foot. But for just about everyone, there is a workout they can do."
Instead of playing basketball or tennis, people with numb feet may need to exercise on a treadmill (while holding the handlebars to prevent falls) or a stationary bike, which puts less pressure on the foot. Other options include yoga, Pilates, resistance training, and swimming. Pretty much anybody can tread water in the pool, do exercises with leg weights, or participate in water aerobics. The point is to stay physically active, regardless of whether you can do your favorite exercises anymore.
People with advanced neuropathy might need to further adapt to a new way of life, one with a cane or walker for balance. They may need to accept outside help for tasks they'd usually do solo—like cleaning the gutters or mowing the lawn.
Nevitt's inability to care for himself was distressing. He watched his entire life come to a halt. When he had given up, hope came in the form of family and friends who traveled for hours just to spend an hour with him and to help him with the tasks he could no longer do. "That's when I realized that maybe it was not so bad for these people to do these things for me," he says. "It was for them that I did not want this to get the better of me. I would fight and get back to some kind of life again."
Having a support system made it easier for Nevitt to accept his type 1 diabetes and the complications that came with it. Four years later, he uses a wheelchair to get around town, taking pictures of a world he can now participate in. "I have come to terms with neuropathy and accepted it as me. This is my life," he says. "It's about adapting my life to live around and with [neuropathy]."
Understanding how to deal with neuropathy takes time, especially in advanced cases when the pain or numbness seems to dictate your life. Medications help, but even more important is attitude. "Medications are only a part of the puzzle," says Nevitt. "If your mind is not in a good place, then they alone will not work. You need to find something you enjoy doing." For him, it's photography. Snapping pictures takes him away from the pain and his other health problems. It's an escape he can turn to in the early hours of the morning when his neuropathy keeps him awake.
Nevitt also says he has mellowed out, maybe because of the photography or maybe as a result of his acceptance. "Nerves and stress go hand in hand, so the worst thing to do is fight and get angry and upset, as it only increases the pain. Share your emotions and do not bottle it up. You can't do this on your own, and you need support," Nevitt says. "Don't try and fight it. Work with it. And do what you can when you can, so when you are having a bad moment you can look back on the good times—and know that there are more to come."