Diabetic neuropathy is a potentially frightening but common complication of diabetes. Research suggests that up to one half of all people living with diabetes have one of the various forms of neuropathy. 

While many people don’t talk about this complication, we sat down with Kaye Peterson, a retired librarian from Lebanon, Kentucky, who has lived with type 1 diabetes for over 40 years, to hear her story about living with diabetic neuropathy. 

Kaye Peterson smiling at the camera

Key Points:

  • Diabetic neuropathy, a common complication of diabetes, involves nerve damage from prolonged high blood glucose (sugar) levels, with up to half of all people with diabetes affected.
  • Kaye Peterson shares her experiences with the condition, including symptoms like tingling, pain, and loss of coordination.
  • Despite daily challenges, Peterson emphasizes the importance of blood sugar management, physical activity, and support from medical and community resources to manage the condition.
  • She encourages others with diabetic neuropathy to actively seek help, use preventive measures like regular foot checks, and advocate for personalized medical care.

There are four types of diabetes-related neuropathy:

Peripheral neuropathy: The most common form, it affects the extremities, such as toes and feet, leading to symptoms like pain, tingling, and numbness.

Autonomic neuropathy: Impacts nerves controlling involuntary body functions, such as digestion, heart rate, and blood pressure.

Proximal neuropathy: Causes pain and weakness in the thighs, hips, or buttocks, typically on one side of the body.

Focal neuropathy: Involves sudden weakness or pain due to damage to one nerve or a group of nerves, often affecting specific areas like the eyes or facial muscles.

Read more in: Diabetes & Neuropathy.

Can you describe your journey with diabetic neuropathy? When were you first diagnosed?

Peterson says that she was first diagnosed with the condition about 25 years ago. She explains,

“It started in my feet, then in the past year, I had an EMG [electromyography, a test for evaluating the health and function of nerves], which revealed that I had polyneuropathy in my hands, especially the right hand.” 

Polyneuropathy involves damage to multiple peripheral nerves and is a more complex progression of diabetic neuropathy, which typically affects only a single nerve. 

This condition results in symptoms like impaired coordination, and altered sensation and feeling, impacting multiple areas of the body outside of the brain and spinal cord.

What were your initial symptoms, and how have they evolved?

Peterson says that the symptoms really hurt and came on abruptly.

“It first started as tingling and pain in my feet. It felt like I was being shocked by an electric fence.”

How does diabetic neuropathy affect your daily life and activities?

Diabetic neuropathy can greatly affect quality of life. It can potentially limit your ability to work, exercise, or enjoy life without pain. 

Peterson explains,

“I have trouble with my balance and I was falling. I have numbness and swelling in my feet. I have lots of pain, swelling, and numbness in my hands.” 

Are there specific routines or adaptations you’ve found helpful in managing the condition?

Getting around is harder than it used to be for Peterson. She says,

“I use a rollator [wheeled walker] to get around. It helps with my balance. I also have orthostatic hypotension, meaning my blood pressure drops when I stand, so the rollator is a great help.”

Staying as active as you can be is of great importance if you live with diabetes, even if you are dealing with complications like diabetic neuropathy. 

Getting physical activity can help with maintaining insulin sensitivity and blood sugar management, which is important not only for diabetes but overall health.

What treatments have you tried for managing neuropathy? How effective have they been?

While completely preventing painful diabetic neuropathy may not always be possible, adopting certain measures can be helpful to make sure it doesn’t get worse.

For instance, it’s important to work with your doctor to make sure you’re keeping a close watch on your blood sugar and A1c levels (a measure of glucose control over the previous 2 to 3 months) and sticking as close as possible to your target range.

Peterson says,

“Neuropathy is a daily challenge, but controlling my blood sugar helps.” 

Can you discuss any lifestyle changes you’ve made to help manage your symptoms?

Peterson says,

“I have been living in an assisted living facility for about 6 months, so I have a life alert monitor on 24/7. The staff are very helpful here.” 

Additionally, a variety of complementary therapies and approaches have shown some promise for neuropathy pain. These include yoga, acupuncture, a variety of supplements, meditation, topical CBD cream, and Transcutaneous Electrical Nerve Stimulation (TENS) treatments, among others. 

It’s important to consult with your healthcare provider or a pain-management specialist before starting any new treatment regimen to ensure it is safe and appropriate for your specific condition.

What kind of support have you received (medical, family, community) since the diagnosis?

Peterson says that she couldn’t manage without her community of support. Moving through life with type 1 diabetes and its complications can be hard as you age. 

But, she says,

“I get lots of help from the staff. My family is a great help, and my endocrinologist and primary-care provider have been very supportive.” 

What do you wish more people understood about diabetic neuropathy?

Peterson believes there are many misconceptions about diabetic neuropathy, which are sometimes shared by those in the medical field.

She continues,

“It hurts and is a precursor to many other problems, like finding a foot ulcer that you didn’t feel until it’s a bigger problem.” 

Sometimes complications can snowball into bigger issues, and that is why working to prevent diabetic neuropathy from getting worse can be very helpful. 

Some tips from the National Institutes of Health to maintain the health of your feet include:

  • Work with your doctor to ensure you’re meeting your blood sugar and A1c goals.
  • See your doctor and/or podiatrist regularly for foot exams.
  • Check your feet and lower legs daily for signs of infection such as redness, swelling, etc., and also for cuts, sores, or any unusual changes.
  • Always wear shoes when walking outside to protect your feet from injury.
  • Prevent skin cracking by using lotion regularly (except between your toes to avoid moisture buildup that can lead to infection).
  • Keep your toenails cut straight across and clean; file them gently without cutting into the corners.
  • Wear comfortable, well-fitting shoes that provide good support without squeezing or rubbing any part of the foot.
  • Wear clean, dry socks with your shoes; choose seamless socks to avoid irritation.

Are there misconceptions about the condition that you encounter?

Peterson confirms that there are misconceptions in society and the media. 

She says,

“There is a misconception that you’re going to lose your feet to amputation anyway and you’re going to die sooner than others.”

In fact, you can live a long, healthy life, even if you have diabetic neuropathy or other diabetes complications.

What advice would you give to someone who has just been diagnosed with diabetic neuropathy?

Peterson says,

“Check your feet and toes for cuts and scratches every day. Use lidocaine patches to help alleviate the pain [with your healthcare provider’s OK]. Don’t be afraid to ask for help!” 

She also wants to reiterate that you’re not alone, even if not many other people are talking about diabetic neuropathy. You can find support and assistance from family, friends, and the diabetes online community. People want to help.

How do you view the future in terms of your condition? Are there new treatments or research that you find promising?

Peterson says,

“Neuropathy has caused me to lose a big toe, but it doesn’t affect my heart, head, and voice to advocate for people with diabetes and their caregivers. Wound care facilities are a big asset in hospitals.” 

What are your hopes for advancements in the management and understanding of diabetic neuropathy?

Peterson is hopeful for her future and for the future of all people living with diabetes. At its core, this invisible condition is hard and it can be lonely, especially if you develop diabetes complications. But, she reminds us to take heart. 

She says,

“Remember that people with diabetes are not alone. Ask for help and be your own advocate. Most doctors believe that all people with diabetes are alike, but it’s not a one-size-fits-all disease. Advocate, advocate, advocate!” 

Final thoughts

Living with diabetic neuropathy is undoubtedly challenging, but Kaye Peterson’s story is a testament to the resilience and adaptability of those who face this condition. 

Her experiences underscore the importance of community support, vigilant self-care, and proactive healthcare management. By taking control of her condition through consistent monitoring and making lifestyle adjustments, Peterson demonstrates that it is possible to maintain quality of life despite the difficulties posed by neuropathy.

As we continue to make advances in medical science, the hope for better management and understanding of diabetic neuropathy grows.