I was a young adult when diabetes-related neuropathy first came into my world, and it was a very unsettling experience. At first, it was a tingling in the tips of my toes. That gradually evolved into burning sensations and sharp, shooting pains in my toes, feet and lower legs.
Living with type 1 diabetes since age 5, I had more than a decade of T1D under my belt at that point. My blood sugar management had been less-than-stellar in my late teen years, and my pediatric endocrinologist had warned me continuing that way would likely lead to diabetes complications.
I didn’t listen, so suddenly there I was in my early 20s experiencing my first diabetes complications. This was back before social media existed, so I felt very isolated and overwhelmed.
Now, more than 20 years later, I feel like a veteran of everything from varying degrees of nerve discomfort and pain, to the emotional and mental challenges that go along with diabetes complications. And the Diabetes Online Community (DOC) has helped me find the most appropriate medications and needed peer support to navigate this journey.
I am not alone. Neuropathy is one of the most common of diabetes complications, with estimates that 60 to 70 percent of PWDs (people with diabetes) experience it to some degree.
Here’s what you should know, if you are a fellow PWD living with or starting to experience neuropathy.
In a nutshell, neuropathy is damage to the peripheral nervous system, the vast communication network that sends signals between the central nervous system (the brain and spinal cord) and all other parts of the body, according to the National Institutes of Health (NIH). Peripheral nerves serve to send sensory information to the central nervous system (CNS), such as a message that your feet are cold. They also carry signals that tell your muscles to contract, and to help control everything from our hearts and blood vessels, to digestion, urination, sexual function, bones and immune system.
The NIH explains that when these nerves malfunction, complex body functions can grind to a halt. The disruption comes in three ways:
- loss of signals normally sent (like a broken wire)
- inappropriate signaling when there shouldn’t be any (like static on a telephone line)
- errors that distort the messages being sent (like a wavy television picture)
We tend to use the term “neuropathy” as if it were a single ailment, but in fact there are 4 different types of diabetes-related neuropathy, as outlined by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK):
- Diabetic Peripheral Neuropathy (DPN): the most common form that causes pain, tingling, burning or numbness in the extremities, especially the feet, but also in the hands and arms.
- Diabetic Autonomic Neuropathy (DAN): that causes problems in digestion, bowel and bladder function, sexual response (for both men and women), and excessive perspiration. It can also affect the heart and blood pressure, as well as nerves in the lungs and eyes. For those with diabetes, it’s also even more scary that DAN can make it more difficult to notice dangerous blood sugar drops since the otherwise typical hypoglycemia symptoms aren’t present, resulting in hypoglycemia unawareness.
- Proximal Neuropathy: which means “origin” and causes pain in the thighs, hips, or butt and leads to weakness in the legs.
- Focal Neuropathy: which causes sudden weakness or pain of one nerve or a group of nerves anywhere in the body. This type also includes carpal tunnel syndrome, that compresses nerves in the wrist and affects 25 percent of people with diabetes.
For most of us with diabetes, the most common type we’re likely to experience is diabetic peripheral neuropathy (DPN). It’s the result of damage to the peripheral nerves, caused by the corrosive effects of elevated blood sugars over time. In some people it causes a loss of sensation, and in others is causes phantom pain that ranges from barely noticeable, to mildly annoying, to absolutely horrific.
DPN impacts us by hitting at how the brain communicates with our bodies through the so-called voluntary movements we make. If I reach out to take a drink of my cup of coffee, I’ve just used my voluntary nerves. I chose to make a movement and my brain sends messages, via assorted nerves, to the muscles in my arm, hand, and fingers to pick up the cup and move it to my mouth. It doesn’t take any particular degree of concentration to do this, but it does require conscious choice. It’s this voluntary system that’s damaged by peripheral neuropathy.
Over time, higher glucose levels are a main factor in diabetes that can lead to nerve damage and neuropathy. The landmark Diabetes Complications and Control Trial (DCCT) conducted from 1982–1993 taught the medical establishment that the likely risk of any complication increases if your A1C (average three-month glucose level) remains elevated over time. While it also does appear in
The go-to advice from medical experts and healthcare professionals about any diabetes complication is “keep your blood sugars in range.” Yep, I’ve been hearing that oh-so-obvious advice since childhood. For me, the drumbeat grew louder in my teens and early 20s, when I was most neglectful of my diabetes management — and eventually began experiencing neuropathy for the first time.
Medical experts differ on the idea of possibly “reversing” diabetes-related neuropathy.
Some doctors insist that damaged nerve tissues often cannot be completely repaired. Yet, the NIH’s National Institute of Neurological Disorders and Stroke (NINDS) specifically states: “Correcting underlying causes can result in the neuropathy resolving on its own as the nerves recover or regenerate. Nerve health and resistance can be improved by healthy lifestyle habits.”
That is in line with what my own endocrinologist explained to me many years back. He said that depending on the severity of nerve damage, once you start improving glucose levels and remain consistent, the body can start to heal itself and some of that early nerve damage can reverse itself. In my case, he explained that could mean more short-term effects initially, as in: “it may get worse, before it gets better.”
If you are heading towards neuropathy,
So what are we supposed to do?
There are a handful of medications to address this particular diabetes complication. But keep in mind, you’re treating the symptoms (i.e. the pain, burning, tingling, etc.) and not the root cause of the neuropathy itself.
The best option for you will be determined via conversations with your healthcare provider about your individual needs and what you’re comfortable with. But generally medical professionals look to anti-seizure drugs like Pregabalin (brand name Lyrica) and Gabapentin (Gralise, Neurontin) to treat neuropathy pain.
When my neuropathy has been at the worse over the years, my endocrinologist and I talked through the options and decided Neurontin or its generic equivalent Gabapentin was the best option for me. Unfortunately, of late the FDA has issued some safety warnings about that drug, not least that it may put people with certain respiratory conditions at risk of serious breathing problems.
In 2017, the American Diabetes Association issued a position statement and new guidelines discouraging the use of opioids to treat nerve pain, while recommending two specific medications — Lyrica and duloxetine (Cymbalta) — as the most effective treatments for neuropathy, despite the potential side effects like weight gain.
There are also many “alternative” therapies for treatment, as recommended by the Mayo Clinic: creams and ointments like Capsaicin cream; antioxidents and nutrients like Alpha-lipoic acid and Acetyl-L-carnitine, and acupuncture. As always, Your Diabetes May Vary.
Another option is a type of technology involving Transcutaneous Electrical Nerve Stimulation (TENS). TENS delivers tiny electrical impulses to specific nerve pathways through small electrodes placed on the skin. Essentially, this can help prevent pain signals from reaching the brain.
One of the first devices ever developed specifically for diabetes neuropathy is a drug-free, TENS-based product known as Quell. It uses neural pulses delivery by a Velcro band wrapped just below the knee, communicating with a companion mobile app that allows users to change the settings and track sessions via a smartphone or iPad.
Approved by FDA in 2014 and launched in 2015, Quell is made by Boston area startup NeuroMetrix in collaboration with the renowned design firm IDEO. The company boasts that it is “clinically proven to start relieving chronic pain in as little as 15 minutes.”
Users simply wrap the Quell band around their upper calf, just below the knee, and turn it on for intermittent sessions of up to 60 minutes, followed by a rest period of another hour (more than 60 minutes at a time can cause overstimulation).
Quell works by stimulating nerves in your upper calf with neural pulses, that trigger a pain relief response in your central nervous system that blocks pain signals in your body. So it helps treat pain in the back, legs, or feet –- the pain does not have to be located at or even near the spot on your leg where the unit is worn.
Online reviewers give the Quell 2.0 device fairly high marks for pain relief, without the risk of side effects caused by drugs. The Quell starter kit costs $299.
Well, possibly. More accurately: socks marketed to PWDs most often address circulation and blood flow — a main issue related to neuropathy.
There is an array of different types of socks marketed to PWDs out there, but generally they’re all designed to allow for better circulation and keep feet dry, warm and protected from foot injuries. They’re not guaranteed to prevent or halt neuropathy, but they definitely can help with comfort and protection against small, unnoticed foot injuries, which often become huge infections in people with neuropathy.
Depending on your particular foot issues, you may benefit from the various features: seamless, moisture-wicking, padded, breathable, etc. Seamless, for example means without tight elastic at the top to prevent the socks from digging into the skin and cutting off circulation. Fitted and padded socks can also be more comfortable. For a lot more details, check out this guide to .
As mentioned, I’ve been living with diabetes peripheral neuropathy for almost two decades now.
Over the years, there were times when the neuropathy seemed to disappear completely, only to pop up again unexpectedly later on. Sometimes I’ve had sharp pains that have engulfed my toes, feet, hands, up my legs, and even other areas of my body. Most of the time my symptoms are mild.
Interestingly, I get a feeling like ants are crawling on my skin, or even a bit more pronounced pain, as a sort of warning bell when my blood glucose levels are skyrocketing for whatever reason.
The tingling from neuropathy is clear evidence and quite motivational in telling me what needs to be done: Better BG management. There may be a mild burning sensation or pain now, but it’s not the end. I know it will get worse. This serves as a signpost for me to get back on track. I remind myself that we all wake up each morning with a fresh chance to do the right thing.
When my neuropathy flairs up, I know it’s time refocus on precise calculation of insulin doses, and taking those correction doses when I know I need them. It means getting “back on track” with regular exercise to keep my BGs in check, and reconnecting with folks in the online community for moral support and new tips.
I remind myself also that life with diabetes can be tough and emotionally-taxing, and our mental health is a critical part of the bigger picture of how we take care of ourselves.
Any diabetes complication can be scary, but I have learned to manage neuropathy effectively and even use it as a guidepost in moving forward. For that, along with all the medical guidance and peer support through the years in dealing with this, I am grateful.
Mike Hoskins is Managing Editor of DiabetesMine. He was diagnosed with type 1 diabetes at age five in 1984, and his mom was also diagnosed with T1D at the same young age. He wrote for various daily, weekly and specialty publications before joining DiabetesMine. Mike lives in Southeast Michigan with his wife Suzi and their black lab, Riley.