April is National Foot Health Awareness Month — yep, the feet have a month, too! — so we’re returning to our 411 on Complications series with a foot-featured post for y’all. But not a typical “neuropathy is bad” post with toe-curling scary scientific talk. No, we’ve done something along those lines about diabetic neuropathy before.
This time, we wanted to explore the emotional side of living with diabetic foot problems, and why so few PWDs actually talk about this, when in fact it’s the most widely-impacting diabetes complication around…
For some reason, it’s almost as if we PWDs are playing footsie when it comes to this complication — only gently nudging at it with our toes, under the table where it remains hidden (hooray for foot analogies!).
How ironic, given that the stats show up to 70% of PWDs are affected by diabetic neuropathy. And that’s probably under-reported, with some believing that neuropathy possibly impacts as many as 80% of us to some degree.
I speak from experience on this topic. I’ve lived with neuropathy for a number of years, after first experiencing some mild feet and leg symptoms back in my mid-20s close to a decade ago.
Like anyone who’s been living with diabetes for some time or has surfed the Web about this complication, I can recite the basics: there are four types of neuropathy: diabetic peripheral neuropathy (DPN) that’s the most common kind and impacts the feet, toes, legs, hands and arms; autonomic neuropathy causing issues that include digestion, sexual response and sweating problems; proximal neuropathy that causes pain in the thighs, hips, and behind; and focal neuropathy that leads to muscle weakness anywhere in body. They all cause varying sorts of pain and numbness, sometimes even a feeling like your limbs are on fire, and yes — there are all kinds of treatments and drugs you can turn to.
But that’s not what I was after when I first started experiencing these symptoms, mild at first but steadily getting more pronounced and life-impacting.
Thanks to my tingling toes, shooting pains in my feet and lower legs, I set out in search of “real stories” of how fellow PWDs were actually living with this condition. Back then in 2005, I had been married for a very short time and the thought of facing painful (not to mention unattractive) feet for the rest of my life scared the heck out of me. My doctors could spout off all the horror stories about amputations and advice of “keep your blood sugars in check,” but I didn’t know of anyone who could tell me what it was really like to live with neuropathy.
Not medicines or treatments or the scary complication talk, but the real “living with it” part.
I went online to find those people, to see if there was anything I could learn…. about sitting still with my feet curled painfully under the desk at work while experiencing these sensations, about how to avoid kicking my wife in bed thanks to a shooting pain and leg restlessness, and about whether I’d ever be able to put my feet up in a recliner again without losing all sensation from the knees down.
Sure enough, I found others experiencing all of this — and a whole community of support! But for some reason, the complication talk was still kept at a minimum and not many shared their experiences with foot problems. Even I didn’t broach the topic too often, especially after the pain began to subside.
That lack of discussion, I think, is almost a complication in itself. For many of us PWDs, the emotional stigma and fear of complications can be the worst part.
Talking It Out
That’s why it was so reassuring to me recently when a friend and fellow PWD reached out about this very issue. D-blogger Scott Johnson has been helping spread awareness about diabetic neuropathy, and get the conversation going about how many of us it really does impact. Scott hopes that by connecting us on this topic, we can better share treatment approaches and ways to even prevent neuropathy.
For the past year, Scott’s been working with Louisana-based biomed company Pamlab, which was recently bought by Nestle Health Sciences and specializes in medical foods aimed at specific issues such as diabetic neuropathy. The company has been wondering how to get people talking about diabetic neuropathy more, and if creating web chats or online sites would help PWDs better manage and treat this complication.
“It’s incredible to me that there isn’t more discussion about living with it” since so many PWDs are affected, Scott says.
From a handful of online chats he’s coordinated so far, he’s learned that many PWDs hesitate to talk openly about their neuropathy because of shame and guilt. They feel like it’s their fault, to some degree, that they are experiencing the complication.
This sounded very familiar to me, as it’s pretty much how I’ve felt for years. Also, it’s clear that if someone’s neuropathy isn’t at the “very painful” priority level, they might be less likely to focus on it and more likely to ignore it.
Personally, I started taking neurontin when the shooting pains and fire-feelings got severe, and that eventually helped alleviate the issues until I got my glucose levels under better control and the symptoms faded away.
But it was the talking openly about my diabetes and complications that helped the most, and taught me how to live with it.
We all know the value of peer-to-peer support in general and that’s finally being recognized more by the medical community, but this hasn’t trickled over into the complications side of the coin to date and there’s really not any data on that aspect… something that Scott and Pamlab, at least, are investigating.
Scott’s organizing a bigger “virtual conference” that will focus on talking about complications in general and how to make the best of life with them. The hope is also that more people will learn about neuropathy up front, so they can perhaps take action to avoid it. This new chat is planned for mid-May, with more details and the website expected shortly, Scott says.
UPDATED on May 8: The first-ever Diabetes Hope Conference will be held May 21, 2013, at 11 a.m. Central time. The conference is free, but you need to register in advance. DOC members taking part include: Manny Hernandez, Mike Lawson, Emily Coles, Kerri Sparling, George Simmons… and Scott Johnson, of course!
Fresh Ideas for Treating Your Feet
Through the peer-to-peer connections, I’ve been able to take a fresh look at some of the treatment ideas that had originally seemed trivial, through my jaded-PWD eyes.
One of those is wearing the infamous “diabetic socks,” which used to make me smirk and roll my eyes every time I saw them in an ad or PR pitch. But a couple of years ago, I actually bought my first pair of these socks and tried them out — and only at the suggestion of another PWD, who was mocking them while at the same time telling me they are effective, so I opted to try the socks out myself. And what do you know, they do work!
I’ve tried a few different brands, but the one that’s most commonly found in my sock drawer now is Dr. Scholl’s. These socks have non-binding tops that aren’t tight on my lower legs, important thanks to my less-than-ideal circulation in that area. They’re also quite soft with cushy soles, something I’ve found nice to walk around on. Sure, the website for these socks lists a bunch of other benefits — like “moisture management” and “smooth toe seam” — but those haven’t really been an issue for me.
Through a chat with another PWD, I also learned about a new “revolutionary” product for PWDs with neuropathy in the feet, launched in November by a new company called Orpyx Medical Technologies out of Canada: it’s a self-monitoring insole system for PWDs. The insole connects with a wristwatch that allows you to view real-time feedback about excessive pressure or injury in the feet. Since diabetic neuropathy causes a wide range of sensation loss and numbness, this insole is supposed to help PWDs more actively manage their foot health to prevent ulcerations, infections or amputations (those dreaded scary words!)
Orpyx reached out to us not long ago with the video below. The first three-and-a-half minutes cover basics stats and information about neuropathy, followed by two minutes of Orpyx showing off their new sensor-based technology:
Interesting stuff, and we’re intrigued to see how people might adopt something like this.
So, innovation in diabetes reaches all the way to our feet, in helping us treat neuropathy.
And hopefully connections like the ones Scott’s enabling help people engage more on this topic rather than dance around it (ha!) as they might have in the past… Because the more we know, and the more we can share with others who “get it,” the more prepared we are to deal with the health issues at hand, right?
Healthcare Professionals: if you’re out there reading this, hopefully the takeaway is that Behavior Change is motivated by real-world experiences. The more peer support we have, the more likely we are to be “compliant” to the actions that really improve our health!