The Shoe Problem For Neuropathy Sufferers

Today's post from pamspaulding.net (see link below) is a personal story of a woman trying to find the best shoes to suit her neuropathy symptoms. Many people will identify with her problems and although the suggestions are of American shoe brands, it does highlight the fact that we need to find footwear that is both reasonably stylish and comfortable and supportive. That's not an easy task!

When you have neuropathy-damaged feet, good (cute) shoes are hard to find. 
Posted by Pam Spaulding Saturday, June 8, 2013

 The stereotype is that lesbians wear "comfortable" shoes, as in unfashionable, or maybe work boots, I have no idea.

 Anyway, this lesbian has serious neuropathy in both feet. I've had insulin-dependent diabetes for 30 years, and thankfully my eyes and kidneys -- usual targets of long-term damage -- are fine, unfortunately the feet are what took the damage. My blood sugars have been in good control, but it's hard not to have some long-term effects having diabetes for this long. BTW, it runs on both sides of my family -- both of my parents had adult-onset but were not obese. My brother is fine; I seemed to be the one to get all of the horrid metabolic and immune disorders passed down. Even my RA, according to my rheumatologist, was spawned through the genes; my mom had sarcoidosis, which is in the same auto-immune family.

 Anyway, it's hard to describe what neuropathic pain feels like -- it's simultaneously numbness paired with extreme sensitivity at times to the touch, such as feeling like you're walking on hot coals, or someone is stabbing you with little knives on the soles of your feet. The duality of this is both frustrating and annoying because it can ramp up at any time. The worst-case scenario is an attack of it at night -- I've had pain so bad that even having the sheet touch my feet under the covers was excruciating.

 On the other hand, my feet are nearly completely numb to hot or cold, which can be dangerous. Burning hot water feels only warm on them; ice barely registers as cold. The numb aspect also makes it easy to slip in the shower, since my feet don't have the correct sensation to grip the wet floor well. I have to have bath mats all over the floor to make it to my slippers.

 One of the few topical things that help is capsaicin, derived from hot peppers. Mostly this is used by folks with osteoarthritis. In treating neuropathy, the heat sensation generated by it cancels out/breaks up the neuropathic signals causing the pain. Kate tried using it on a sore muscle and she couldn't bear the burning sensation; I barely feel anything warm on my feet, but after about a half-hour, some of the worst burning subsides and I'm able to finally sleep.

 But back to shoes... 

 Almost all my old shoes -- nice dress shoes, sandals -- had to be tossed out over the last couple of years because they either 1) hurt my feet by causing neuro-pain, or 2) didn't provide enough shock absorption to prevent knee and hip pain that I have from RA. What's left to wear? Well, lots of styles that look like Grandma Shoes. At this point, the only brand I trust to be comfortable are Easy Spirit's Athletic family. At least they come in all sorts of cool colors and styles.

 I took a risk on one shoe that looked kind of cool -- the Naturalizer BZees Mary Jane (right). While they aren't dress shoes or sneakers, they fall into middle ground for me. I'll wear these to work or out on the weekend. I've learned that comfort comes before style at this point. It's really not a choice.

 One of the brands that up until this about a year ago that I could reliably trust were Jambus and J-41s. I wore one pair last week and boy did I pay for it. They seemed comfy enough -- they have memory foam insoles -- but the next day my left knee and hip hurt so bad that I was limping for two days. I had to fall back on my trusty Easy Spirit Mary Janes to get enough support and shock absorption. I was crestfallen. I love those J-41s. I wanted to make a bargain with myself that I can still wear them in some limited way...oy.


 http://www.pamspaulding.net/2013/06/when-you-have-neuropathy-damaged-feet.html

Small Foot Wounds A Threat For Neuropathy Sufferers

Today's post from reuters.com (see link below) again addresses diabetics as being the target audience but as so often, this article applies to everyone with neuropathic foot problems, irrespective of the cause. It looks at a Dutch study showing how dangerous small wounds on the feet can be if neglected. This especially applies to neuropathy patients experiencing numbness on their feet. The likelihood is that wounds may go unnoticed and rapidly become ulcerated and infected. It goes on to advise people to pay special attention to footwear and daily foot care, something which may seem obvious but is easily forgotten in the daily struggle to get by.

 

Minor foot wounds a major threat for diabetics
By Krystnell Storr NEW YORK Mon Apr 14, 2014   (Reuters Health) - For people with diabetes, one foot ulcer is very likely to lead to another, according to a new study that finds even minor lesions create a major risk of more severe foot wounds.

The best defense, Dutch researchers say, is to treat even minor sores carefully and to protect feet from pressure and injury with specialized footwear.

"I hope medical specialists, and other health care practitioners will use this knowledge and implement it in clinical practice," said senior author Sicco Bus, staff scientist with the Academic Medical Center at the University of Amsterdam.

People with diabetes often lose feeling in their feet as a result of nerve damage, known as neuropathy. The lack of sensation makes diabetics prone to injure their feet without realizing it, and allows small wounds to grow into serious ulcers that can eventually lead to infection or gangrene.

In the U.S., 26 million Americans have diabetes. Every year, 65,700 of these patients have lower-limb amputations.

Past research has shown that having had a foot ulcer is a significant risk factor for having more of them.

"Ulcer recurrence is a debilitating condition for the patient, risking further complications such as infection and amputation, and influencing loss of patient mobility and quality of life," Bus told Reuters Health.

To find out what factors most strongly predict who will develop foot ulcers, Bus and his colleagues analyzed data from a large trial of specialized footwear for diabetes patients with nerve damage in their feet (see Reuters Health article of January 24, 2013 here: reut.rs/1ewrG4F).

For the new analysis, the researchers focused on 171 participants, all of whom reported having a foot ulcer at least 18 months before the study began. For a period of 18 months, each person was checked for new ulcers every three months, and interviewed about their daily habits.

The pressure on their feet while walking barefoot and in the special footwear was also measured. During one week, sensors in the shoes reported how often the participants wore their shoes and how many steps they took.

During the study period, 71 people developed ulcers on the soles of their feet, 41 of them as a result of unrecognized "trauma," Bus and his colleagues report in the journal Diabetes Care.

Among those 41, the people who had minor lesions when the study began were nine times more likely than those who didn't to develop an ulcer. Often the wounds were in the same place as a previous ulcer, suggesting there was ongoing pressure or injury happening at that spot, according to the researchers.

Patients who wore shoes customized to the pressure points of their feet, however, had a 57 percent lower risk of developing a new ulcer compared to those who didn't.

Currently, to prevent ulcers, doctors and nurses have to check the feet of diabetic patients every day for wounds or use specialized tools for determining pressure points that might be prone to blisters.

"Some diabetics wear wounds on their feet kind of in the same way that a person might wear a hole in their sock, but for a diabetic, this hole gets infected and often leads to an amputated foot," Dr. David Armstrong, a professor of surgery at the University of Arizona, told Reuters Health.

"(Neuropathy) is a massive problem, it's silent, and it doesn't hurt, even in instances of gangrene. It's no one's fault, but no one pays attention to it. This study opens up avenues for prevention," said Armstrong, who was not involved in the research.

The protective effect of customized footwear seen in the study highlights the benefits of personalized healthcare in high-risk patients, noted Dr. Lawrence Lavery, a professor of surgery at the Texas A&M Health Science Center College of Medicine and the Scott and White Memorial Hospital in Temple, Texas.

Private insurers will have to step up to pay the expense, Lavery said. "This is something that is well worth investing in."

SOURCE: bit.ly/1iBJUCL Diabetes Care, online April 4, 2014.

http://www.reuters.com/article/2014/04/14/us-foot-diabetics-idUSBREA3D0UJ20140414

Shoe Choices For Neuropathy Sufferers

Today's short post from wellandgood.com (see link below) is a salutary warning for neuropathy patients addicted to their favourite footwear (because it's the least painful!) We all do it: we wear the most comfortable options because we have to get places with the minimum of discomfort but that doesn't necessarily mean that we're doing our neuropathic feet any favours! Read on to see why and consider breaking in a couple of alternatives. However, if you're like me and have wasted money on shoes that felt great in the shop but after two days, caused more pain than you ever thought possible, you'll know that making the right choice is crucial.

Why Stan Smiths might be ruining your feet
Katie Maguire, June 7, 2016

When Victoria Beckham famously traded her stilettos in favor of comfy white sneaks—claiming she just “can’t do heels anymore”—the world applauded her for adopting a more down-to-earth footwear M.O. (And, let’s be real, we all scooped up a few new pairs in celebration.)
But wearing flat sneakers 24/7 doesn’t mean you’re automatically destined for pain-free peds. According to Jackie Sutera, DPM, a New York City-based podiatric physician specializing in the prevention and treatment of foot pathology, foot issues aren’t so much about shoe style as they are how much you’re wearing your go-to pair of kicks.
“Everyone is born with a fat pad at the bottom of their foot–think of that chubby, bottom part of a baby’s foot—but, over time, the overuse of ‘bad’ shoes wears it down,” Sutera explains. “So while heels definitely do that to you, it may be more surprising to know that flats and unsupportive sneakers will cause that fat pad to wear down just as quickly.”
This means that while Beckham—along with most of the athleisure-loving female population—may have made the switch to Stan Smiths, simply ditching heels isn’t enough to save feet from painful things like inflammation, tendonitis, and pinched nerves. And living solely in your favorite flats can do just as much damage.

“It may be surprising to know that flats and unsupportive sneakers will cause [your foot’s] fat pad to wear down just as quickly [as heels].” The cure? Make sure to mix up your footwear, says Sutera.
“Sneakers are comfortable and now fashionably complete a look, so I’m not saying you have to sacrifice your style,” Sutera explains. “But don’t wear them on the walk to the subway, and then all day at work, and then all night to go out—and the same goes with flats and heels.”
She suggests alternating your trend-driven kicks with super-supportive options—they do exist!—or buying a supportive insert that can seamlessly slip into any shoe, like Vionic orthotics.
If it means we get to hold on to our go-to Adidas low-tops, that’s a pretty small price to pay.

http://www.wellandgood.com/good-looks/foot-pain-flat-shoes-sneakers/

How Can Marijuana Help Neuropathy Sufferers

Depending on the laws and cultural attitudes within your own area, today's video about the usefulness of marijuana for pain problems (especially neuropathy) may or may not be relevant for you. Unfortunately, reactions to marijuana as a medical tool range from the hysterical and mistrusting to being totally convinced of its efficacy; much of the former is based on preconceptions stemming from various governments' wars on drugs as a whole. Many neuropathy sufferers already benefit from the use of medical marijuana but if you're a non-smoker, or an ex-smoker, you may find it much more difficult. The video suggests using vapourised marijuana, to avoid the worst lung problems but this does add to the expense, as well as being somewhat tricky to use. You also have to be able to accept getting high, which contrary to popular myth is not for everyone! Nevertheless, this video is a useful explanation of how marijuana works medically.

Are Neuropathy Sufferers Fear Avoidance Cyclists

Today's post from psychologytoday.com (see link below) is an interesting article that directly applies to the neuropathy sufferer who's movement is impaired by the symptoms of nerve damage. The more your feet, or legs, or hands, or arms or involuntary organs play up, the less inclined you are to put them to the test by moving more than necessary. It's called the 'fear avoidance cycle' and neuropathy patients are classic sufferers. I'm fully aware, I bore you to tears with constant posts about exercise but if you read this article you may come to realise that however painful some form of exercise may seem, your body and mind will thank you for it later. Worth a read to avoid the slippery slope down to inactivity...and even more pain.

A Day Without Pain 
Treating Chronic Pain to Improve Function
A holistic approach to the healing process
Mel Pohl M.D., FASAM Posted Jul 30, 2013

Unlike other injuries, chronic pain is unrelenting, lasts longer than six months, and is characterized by decreased function. The desire to avoid feeling more pain or aggravating the pain one does feel leads patients to avoid movement, which, over time, erodes function. The old “use it or lose it” mantra is definitely applicable here.

It’s understandable that patients with chronic pain fear worsening their pain by moving, but what most people don’t realize is that maintaining mobility is essential if function is to be preserved for the present and the future. Body parts that go unmoved for any length of time eventually become “frozen.” This can happen with the back, the abdomen, the joints (e.g., knees and shoulders), etc. Furthermore, with decreased movement, circulation decreases, scar tissue eventually forms, and pain increases.

The consequences of this are not merely limited to decreased mobility and lingering pain. Avoidance of movement ultimately leads to complete non-function. When people are limited, they may become ashamed of their disability and want to hide, want to do nothing. If I can’t get my shirt on by myself in the morning, why would I want to go out in public and expose any other problems I have to friends and strangers alike? This response to pain, this avoidance, leads to feelings of depression and helplessness that only feed into the cycle of immobility and worsening pain until the patient is entirely non-functioning. This is called the Fear Avoidance Cycle.

Now, some people will try to function around all of this by taking drugs. If I go to a physician or a prescriber and I say that my shoulder or back hurts, what will I be prescribed? Painkillers in the form of opioids (narcotics). Many people who take these medications and as a result feel less pain assume that their treatment is working for them. Successful treatment of chronic pain must include improvement of function as well as reduction of the level of pain.

When people whose only treatment has been medication to reduce the pain come to treatment at my center, I notice that their function is deceased and they are sleepy, less active, and cognitively impaired. This lethargy affects all aspects of their life, from digestion to social interactions. We see people medicated for pain, but their function overall has suffered as a consequence. This is not the proper treatment of chronic pain.

The root of this problem is fear. People need to be supported to walk through their fear of pain. Numerous studies that have proven that if someone is afraid of a certain activity, he or she will avoid that activity, and as a consequence won’t progress in his or her treatment. If we expose the person to the activity with support and gentle movement, the fear slowly diminishes. If fear diminishes, pain does as well, and the person regains mobility and confidence. There is a direct correlation between fear, anxiety, and pain. The solution for Fear Avoidance is increased movement, which will cause some discomfort initially. But it is on a temporary basis because at first patients are breaking up the fibrous tissue that has built up as a result of their inactivity. But with increased mobility we get increased function, and improved self-esteem and lower social isolation. The person overall becomes healthier.

When using medications, it is essential to make sure that the function of the patient improves. Simply taking the pain away and putting someone to bed for 20-plus hours a day is bad pain treatment. Unfortunately that is the cycle that people get into. They can’t sleep because of their pain meds, and then they are given sleeping pills. This makes them anxious during the day, so they are given anti-anxiety pills, and then pills to wake up. The result is that they are over-medicated and they are not living life to the fullest. Their quality of life is diminished. The solution is to decrease or eliminate the use of these medications until overall function improves and life gets better even though there is pain present. It is this delicate balance that defines pain recovery.

https://www.psychologytoday.com/blog/day-without-pain/201307/treating-chronic-pain-improve-function

A Letter with Genuine Relevance to Neuropathy Sufferers

There is very little introduction needed to today's post from lifeinpain.org (see link below) - it speaks very eloquently for itself. If you are suffering from neuropathic pain, you may want to climb on the roof and shout 'Halleluja!'

Letter to People without Chronic Pain
Posted by guest on May 22, 2006

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN
**********************************

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

AUTHOR UNKNOWN

http://lifeinpain.org/node/2151

Caring for Neuropathy Sufferers

Today's video is a powerful reminder that neuropathy can turn out to be anything but a solo problem. It may well prove to be an even bigger problem in the future, for people with HIV and neuropathy, who live alone and are living longer. Nobody wants to become dependent on other people but the reality is that neuropathy can ruthlessly rob you of your independence and then what do you do? The need for support systems in these circumstances may well prove to be one of the biggest challenges facing health and social organisations in the coming years.



This film has been entered into the 2011 Neuro Film Festival from the American Academy of Neurology Foundation at www.neurofilmfestival.com.