Living with Diabetic Neuropathy: One Journey Through Pain

Marilyn Krupnick, diagnosed with type 1 diabetes in childhood, showed symptoms of neuropathy in her 30s. Here's how she got past the pain.

Marilyn Kupnick, 70, first discovered she had diabetic neuropathies at age 35 when she visited a neurologist with symptoms of numbness, pain and tingling in her lower legs and feet. Diagnosed with type 1 diabetes at 12, Marilyn had maintained good blood sugar levels throughout her life, so the diagnosis was a bit of a surprise.

 “I always said that I had control of my diabetes and not the other way around,” says the mother of three married daughters and grandmother to six.

Diabetic neuropathies, a family of nerve disorders caused by diabetes, affect about 60% to 70% of people with the disease. Two types of neuropathies are most common: peripheral neuropathy (Marilyn’s type), which causes pain, tingling, or numbness in the hands, feet, arms or legs and the more serious type known as autonomic neuropathy, which can cause changes in digestion, bowel and bladder function, sexual response, and perspiration.

Autonomic neuropathy can also affect nerves that serve the heart and control blood pressure, as well as nerves in the lungs and eyes. In addition, it can cause hypoglycemia unawareness, where people no longer experience the warning symptoms of low blood glucose levels.

Although people with diabetes can develop nerve problems at any time, the risk for neuropathy rises with age and the longer you have had diabetes. Highest rates of neuropathy are found for people who have had diabetes for at least 25 years. Neuropathies are more common among people who have problems controlling their blood glucose, as well as those with higher levels of blood fat and blood pressure, and those who are overweight.

Burning Feet and Other Unpleasant Surprises

As her pain and numbness grew progressively worse, Marilyn had more trouble feeling the soles of both feet, which impacted her balance, gait, and ability to climb stairs. The neuropathy sent shooting and nagging pains up and down her legs.

 “The numbness was as troubling as the pain,” she admits. “Stepping on a small grain of dirt felt as though I was stepping on a piece of glass. My pain was a 10.”

Although she relied on a cane and then a walker, scorching pain, tingling and numbness made it eventually impossible for Marilyn to reach the second floor of the middle school where she had worked as a science teacher for 35 years. Despite support from the administration, she retired several years early in 2008. 

While she never shared news of her condition with her students, they observed her difficulties walking, and offered to help her carry items from one classroom to another when her balance was off.

 "Luckily, I never fell at school," she says.

Accommodating the Pain

But at home it was a different story. After several falls on the steps at their house, Stephen, her husband of 50 years, suggested that they move to a ranch house without staircases, which they did 10 years ago.

"There were tough years," Marilyn remembers. "I used to be able to walk five miles three times a week with my girlfriend, and eventually I could barely walk half a block." To help around the house, she hired an aide. Dressing and bathing became progressively more difficult.

Throughout, her husband Stephen provided stellar support. He installed grab bars and night lights throughout the house—the bars for balance and the lights to illuminate her way if she rose in the dark.

"When he hears me nonsensically talking in the middle of the night because of a low blood sugar, he’s the first one to wake me up," she says of her vigilant husband.

Treatment for diabetic neuropathies often involves bringing blood glucose levels within normal range to help prevent further nerve damage. Monitoring of blood glucose, meal planning, exercise and diabetes medicine or insulin can help control glucose levels.

Good blood glucose control may help lessen symptoms, or prevent or delay the onset of further problems, says Marilyn’s  physiatrist Michael Saulino, MD, clinical director of intrathecal therapy services at MossRehab in Elkins Park, Pennsylvania. 

Oral medications are usually the first line of defense against the pain of neuropathies. They include antidepressants, anticonvulsants, and opioids and opioid drugs, as well as some topical creams.

Finding A Solution

Marilyn turned out to be particularly sensitive to drug treatments. Regular dosages of opioids made her groggy, while pregabalin (Lyrica) and duloxetine (Cymbalta) caused swelling in her hands and feet and prompted suicidal thoughts. Two additional anti-depressants, nortriptyline (Pamelor) and venlafaxine (Effexor), had little effect on her pain.

Then three years ago, Marilyn’s condition became even more complicated by a spinal injury due to a fragmented disc. After surgery and physical therapy for the spinal injury, which caused additional peripheral nerve damage, her doctors recommended an interthecal pump, an implanted device that provides pain medication directly to the spinal cord. With the pump, Marilyn is able to take only 1/400th of the oral dosage of hydromorphone (Dilaudid), the answer to her drug sensitivity. She also takes gabapentin (Neurontin), a nerve pain medication and anticonvulsant.

According to Dr. Saulino and Marilyn, the pump appears to be working. Today she rates her pain at a 4 out of 10. And on the few occasions she has breakthrough pain, which she says can happen randomly, Marilyn employs a new remote device that allows her to boost her pain medication.

"It isn’t perfect," she says of the pain treatment. "But it takes the edge off. The worse time is at night, when you have nothing to think about before you go to bed and you focus on the pain."

 "The interthecal pump is one of the new treatments for difficult neuropathies, or cases that are complicated like Marilyn’s," says Dr. Saulino. "Other possibilities beyond oral medications are neuromodulation of the spinal cord, and other emerging techniques, such as peripheral nerve stimulation. These technologies might be more effective for some patients."

While Marilyn’s blood sugar have become somewhat more difficult to control as she has grown older, a typical problem, she hasn't really noticed additional pain linked to higher sugars, although she does note occasional “heaviness” in her legs when her glucose readings rise.

"Marilyn has been keeping a really good eye on her diabetes for years," says Dr. Saulino, who notes that while neuropathy is not reversible, it can stabilize or progress slowly if patients keep up good diabetes care. "Having seen Marilyn for a few years, I think she’s relatively stable."

Although the pain pump is a long-term therapy, in the future, Marilyn could choose to have it removed.

 "She’d have to be weaned off the drugs first, since you can’t do it immediately," says Dr. Saulino.

Notwithstanding occasional depression over her pain, Marilyn remains mainly optimistic and, as much as possible, active. To build her balance, she practices Tai Chi  twice a week and though she can no longer cover five miles at a stretch, she walks a half-mile when she can.

And despite her difficulties with pain and fatigue, she’s considering a future trip to Italy with Stephen.

"You have to move forward," she says.



Updated on: 06/18/20
Continue Reading:
Diabetic Neuropathy Overview