Monday, 26 September 2016

What It Means To Live With Neuropathy

Today's post from (see link below) is a powerful plea for understanding regarding the situation of millions of people living with neuropathy across the world. It highlights the helplessness many people feel when the current drug treatments don't work, or produce side effects almost as bad as the neuropathy itself. If only the rest of the world could read articles like this then things might begin to improve - certainly public awareness. However, that's not going to happen so we have to hope that the media devotes more air time and print space to neuropathy as a disease. Unfortunately, neuropathy cases are only growing at the moment...pity that the treatment isn't advancing at the same pace.

Neuropathy affects millions with no guarantees from treatments
By David Templeton / Pittsburgh Post-Gazette September 13, 2016

Five years ago when Harold Frazier reached 220 pounds and flirted with diabetes, he took to walking 10 miles a day and shed 30 pounds, returning his blood sugar levels to normal.

Problem solved. Or so he thought.

Unexpectedly one day Mr. Frazier, now 63, was unable to lift his foot to the curb. In time, his feet began feeling numb with burning sensations upon awakening each morning and eventual decline in leg and arm function. Today he says he has about 40 percent function of his limbs, forcing his retirement as a maintenance man at the Irwin townhouse complex where he lives.

“Every time I move when I’m asleep I wake up, and I’m lucky to get four hours of sleep a night — and that’s a great night,” Mr. Frazier said, noting he no longer can raise his arms above his head.

“If I am arrested, and they say, ‘Stick ’em up,’ they’ll have to shoot me because I can’t,” he said. “I have lost all the power in my arms.”

Arresting the pain

Mr. Frazier and 40 million other Americans struggle daily with peripheral neuropathy. Initial symptoms typically involve numbness in the feet or hands and may affect other parts of the body such as internal organs. Over time the person can experience sensations of burning, freezing, throbbing or even shooting pain that’s often worse at night, the Foundation for Peripheral Neuropathy reports.

Surprising perhaps is the fact that 70 percent of people with diabetes and up to 40 percent of those who undergo chemotherapy develop painful neuropathy with no cure and limited if any effects from major treatments including Lyrica and Cymbalta, among other drugs.

Alternative treatments exist, each with advocates. But for most people, neuropathy can hinder daily quality of life, preventing activity and exercise, a good night’s sleep and a pain-free existence.

“The pain can be either constant or periodic, but usually the pain is felt equally on both sides of the body — in both hands or in both feet,” according to the foundation website (

Erin Kershaw, chief of the division of endocrinology and metabolism at the University of Pittsburgh and UPMC, said once you develop neuropathy it is difficult to reverse, so prevention is key, especially given that diabetes and alcohol consumption are common but preventable causes.

“Small nerve-fiber burning is extremely uncomfortable,” she said, describing the effects of nerve damage. “It can feel like your feet are on fire all the time,” requiring pain therapies that may have limited impact on reducing pain levels.

Numbness also can result in foot injuries the person may not be aware of due to lack of feeling. This may result in ulceration that’s hard to treat, sometimes leading to amputations. Dr. Kershaw said prescribed drugs do help a substantial number of patients but usually do not eliminate all of the discomfort.

“Neuropathy is a problem that requires more awareness and more research,” she said. “When you see a patient, you are hurting inside because you know the existing therapy is not helping them with pain that’s there every day.”

Cause and effect

About 60 percent of all cases of neuropathy involve diabetes, with chemotherapy-induced neuropathy responsible for about a quarter of all cases and idiopathic neuropathy (where a cause isn’t identified) representing about 10 percent. HIV/​AIDS, repetitive stress, alcohol abuse, inflammatory response, carpel tunnel syndrome, autoimmune diseases and vitamin deficiencies, among others, can cause or contribute to the condition. The American lifestyle and diet also can contribute to and worsen symptoms, studies indicate.

“If nerves are dead, they’re dead,” said Marlene Dodinval, the Foundation for Peripheral Neuropathy’s senior program coordinator. “There is nothing you can do about it.”

The foundation held an international research symposium last week, during which cannabis was discussed as a treatment. It also is working with eight universities nationwide to create a peripheral neuropathy research registry and create a database of patients available for research.

“Neuropathy is an ignored condition,” Ms. Dodinval said. “There is work underway around the world, and more needs to happen.”

The U.S. Food and Drug Administration has approved only pregabalin (Lyrica) and duloxetine (Cymbalta) as treatments for diabetes neuropathy, according to a study update published last month in the American Family Physician journal.

Other nerve-pain and antidepression drugs can serve as second-line drugs with third-line drugs that include opioids. Other treatments include topical creams, sprays and patches including lidocaine, with transcutaneous electrical nerve stimulation providing relief for some, it says.

The update found insufficient evidence to support acupuncture, chiropractic procedures, laser treatments, full-body vibration, electromagnetic field application, and such supplements as alpha lipoic acid, acetyl-l-carnitine and primrose oil. The supplements are championed by some patients with some supportive research.

Ms. Dodinval said some people swear by creams and supplements of capsaicin, an active ingredient in chili peppers.

Relief via support groups

With few effective treatments, Mr. Frazier joined the Pittsburgh Area Peripheral Neuropathy Support Group that meets the third Wednesday of each month April through October at the Brush Creek Evangelical Lutheran Church in Irwin. Members discuss treatments, exchange tips and listen to scheduled speakers.

Bill Wilshire, 70, of North Huntingdon faces his own issue with neuropathy, the exact cause of which is unknown. It began when he kept feeling his socks bunching up under his toes. Pulling up those socks never helped because they weren’t actually bunched up.

Eventually the altered feeling of his toes turned to numbness that affected his balance, eventually jeopardizing his ability to walk. But the retired social studies teacher says he’s one of the lucky ones because he feels numbness but little pain.

Another member, Gerry Getman, 69, of Peters, was undergoing chemotherapy in 2008 for multiple myeloma that’s in remission when he began feeling tingling in his toes and hands. He expected it to go away, as sometimes occurs with chemo-induced neuropathy. But his tingling progressed into pain and burning in his feet, especially at night.

In time, he, too, lost feeling in his legs, reducing his ability to walk without assistance. Now the retired entrepreneur with a doctoral degree in chemistry says he’s 50 percent disabled and controls the discomfort in his arms and legs by keeping his mind occupied.

“I would describe it as fairly severe,” he said. “I have it 24/​7, but it’s always more intense when my mind is not occupied. I actually try to get pretty close to exhausted. I work on the computer until midnight or 1 in the morning so that I can drift off to sleep.

“I think mine has stabilized, and I’ve developed a lifestyle to deal with it quite effectively,” he said. “I mean, you have to. Life goes on.”

David Templeton: or 412-263-1578.

Sunday, 25 September 2016

Is Turmeric The Kick-Ass Spice It's Made Out To Be?

Today's post from (see link below) isn't directly related to neuropathy but discusses the potential health benefits of turmeric, which is something that has long been rumoured to help with nerve pain and promoting nerve health in the body. Other articles on this blog (use the search button to the right, or begin here) are more directly related to turmeric (curcumin) and neuropathy but this one emerges from a BBC program and discusses its health benefits in general. It turns out that turmeric/curcumin prepared in food is more effective than turmeric in pill or powder form. Whatever your conclusions are about turmeric, it may be worth doing a lot more research in relation to nerve damage. Folk-lore herbal remedies are all well and good, but we need a little more proof than that.

Could turmeric really boost your health?
20 September 2016 From the section Magazine

Bold health claims have been made for the power of turmeric. Is there anything in them, asks Michael Mosley.

Turmeric is a spice which in its raw form looks a bit like ginger root, but when it's ground down you get a distinctive yellowy orange powder that's very popular in South Asian cuisine. Until recently the place you would most likely encounter turmeric would be in chicken tikka masala, one of Britain's most popular dishes.

These days, thanks to claims that it can improve everything from allergies to depression, it's become incredibly trendy, not just cooked and sprinkled on food but added to drinks like tea. Turmeric latte anyone?

Now I'm usually very cynical about such claims, but in the case of turmeric I thought there could be something to it. There are at least 200 different compounds in turmeric, but there's one that scientists are particularly interested in. It gives this spice its colour. It's called curcumin.

Thousands of scientific papers have been published looking at turmeric and curcumin in the laboratory - some with promising results. But they've mainly been done in mice, using unrealistically high doses. There have been few experiments done in the real world, on humans.

Find out more

Michael Mosley is one of the presenters of Trust Me, I'm A Doctor, broadcast on Thursdays at 20:00 BST on BBC Two - catch up on BBC iPlayer

Find out more about the experiment

This is exactly the sort of situation where we on Trust Me like to make a difference. So we tracked down leading researchers from across the country and with their help recruited nearly 100 volunteers from the North East to do a novel experiment. Few of our volunteers ate foods containing turmeric on a regular basis.

Then we divided them into three groups.

We asked one group to consume a teaspoon of turmeric every day for six weeks, ideally mixed in with their food. Another group were asked to swallow a supplement containing the same amount of turmeric, and a third group were given a placebo, or dummy pill.

The volunteers who were asked to consume a teaspoon of turmeric a day were ingenious about what they added it to, mixing it with warm milk or adding it to yoghurt. Not everyone was enthusiastic about the taste, with comments ranging from "awful" to "very strong and lingering".

But what effect was eating turmeric having on them? We decided to try and find out using a novel test developed at University College, London, by Prof Martin Widschwendter and his team.

Prof Widschwendter is not particularly interested in turmeric but he is interested in how cancers start. His team have been comparing tissue samples taken from women with breast cancer and from women without it and they've found a change that happens to the DNA of cells well before they become cancerous.

The change is in the "packaging" of the genes. It's called DNA methylation. It's a bit like a dimmer switch that can turn the activity of the gene up or down.

The exciting thing is that if it is detected in time this change can, potentially, be reversed, before the cell turns cancerous. DNA methylation may explain why, for instance, your risk of developing lung cancer drops dramatically once you give up smoking. It could be that the unhealthy methylation of genes, caused by tobacco smoke, stops or reverses once you quit.

So we asked Prof Widschwendter whether testing the DNA methylation patterns of our volunteers' blood cells at the start and end of the experiment would reveal any change in their risk of cancer and other diseases, like allergies. It was something that had not been done before.


Perennial herbaceous plant native to South Asia
Spice is gathered from the plants rhizomes (roots)
As well as being used in Indian food, turmeric is used in traditional medicine and as a dyeing agent

Turmeric recipes from BBC Food

Fortunately he was very enthusiastic. "We were delighted," he said, "to be involved in this study, because it is a proof of principle study that opens entirely new windows of opportunity to really look into how we can predict preventive measures, particularly for cancer."

So what, if anything, happened?

When I asked him that, he pulled out his laptop and slowly began to speak.

"We didn't find any changes in the group taking the placebo," he told me. That was not surprising.

"The supplement group also didn't also show any difference," he went on.

That was surprising and somewhat disappointing.

"But the group who mixed turmeric powder into their food," he continued, "there we saw quite substantial changes. It was really exciting, to be honest. We found one particular gene which showed the biggest difference. And what's interesting is that we know this particular gene is involved in three specific diseases: depression, asthma and eczema, and cancer. This is a really striking finding."

 Turmeric has long been used in Indian food It certainly is. But why did we see changes only in those eating turmeric, not in those taking the same amount as a supplement?

Dr Kirsten Brandt, who is a senior lecturer at Newcastle University and who helped run the experiment, thinks it may have something to do with the way the turmeric was consumed.

"It could be," she told me, "that adding fat or heating it up makes the active ingredients more soluble, which would make it easier for us to absorb the turmeric. It certainly gives us something, to work on, to try to find out exactly what's happening."

She also told me, because our volunteers all tried consuming their turmeric in different ways, that we can be confident it was the turmeric that was making the difference and not some other ingredient used to make, say, chicken tikka masala.

There is a lot more research that needs to be done, including repeating the experiment to see if these findings can be confirmed. But in light of what we've discovered will I be consuming more of the stuff? Probably. It helps that I like the taste and I've already begun experimenting with things like adding it with a touch of chilli to an omelette.

Saturday, 24 September 2016

How To Make Your Daily Nerve Pain More Bearable

Today's post from (see link below) is another 'self-help' post designed to reduce the impact of your symptoms on your daily life and you may find it interesting, depending on the level of cynicism you're feeling today. At least it doesn't resort to clichés based on mindfulness, or yoga, or meditation (all of which may be useful for many people) and any list of self-improvement tasks that includes, swearing and sex, gets my vote. Give some a try - you never know and it may reduce your dependence on chemical pill treatments.

10 everyday activities that can reduce pain, according to science
Starre Vartan December 2, 2015,

Most of us have pain some of the time; some of us have pain most of the time. Whether your pain is temporary or chronic, it doesn't matter: Pain is the worst. Not only is it physically uncomfortable, it's overwhelming, taking over other feelings, interests or desires. Strong pain is debilitating, and for some of us, it prevents basic activities either directly or secondarily. For example, nausea frequently accompanies pain, making meals impossible. (I know when I have a bad headache or aching ankle, I can't eat).

Of course, there are a raft of pharmaceutical options for temporary pain and medical procedures for chronic pain, but some are safer than others and some of us like to avoid taking pills as much as possible. Wherever you are on the pain spectrum, doing any of the things below definitely can't hurt and may very well get you some relief — and we have the science to back up that claim.

Swear: Letting a few choice words fly can reduce feelings of pain in most people, according to a 2009 study. Researchers from Keele University in the U.K. found: "Swearing increased pain tolerance, increased heart rate and decreased perceived pain compared with not swearing. However, swearing did not increase pain tolerance in males with a tendency to catastrophise. The observed pain-lessening (hypoalgesic) effect may occur because swearing inducesa fight-or-flight response and nullifies the link between fear of pain and pain perception."

Hug yourself:
An interesting 2011 study in the journal Pain found that in 20 subjects who were given painful electric shocks, pain was reduced when arms were crossed in front of the body. Like studies that have helped patients with phantom limb pain who use mirrors to confuse or reorient the brain's understanding of the body in space, arm crossing "...impairs this ability to localize tactile stimuli," according to the study, meaning that pain is lessened due to the brain's becoming confused about its origins.

Listen to music: A number of studies have shown that music reduces pain after surgery of various kinds, from gynecologic to major abdominal. And it's even been found to be effective for terminally ill patients with pain.

Sing: Feel free to sing along if you are already listening to music. In a study that compared those who sang versus those who just listened to music and relaxed, those who belted out a few reported better moods and less pain.

Get a hug: Since hugging has been proven to lower cortisol (the stress hormone) and relax the body, it can have some temporary mitigation for pain — as can gentle stroking or other affectionate touch between two people who are both comfortable with the action. A good hug should last 20 seconds for best effect (again, as long as both parties are comfortable with that).

Rub the area around the injury: This floods the brain with stimuli from the area that has been hurt, reducing the brain's ability to focus on the pain's origin area. (This works particularly well for bumped shins and is my go-to move!)

Dance: Dancing in time with others releases endorphins, which can up one's pain tolerance, as found by testing Brazilian dancers who engaged in synchronized and non-synchronized dancing. Those who danced with others released more endorphins, probably due to the social bonding aspect of dancing with others — though you get some positive effect from moving to music too. "Both synchronisation and exertion had independent effects on these measures, so moving energetically or moving in synchrony can both make you feel closer to others when you are dancing," Bronwyn Tarr told "But combining high energy and synchrony had the greatest effects – which might explain why people love to Flashmob!"

Sex: Sex can be mighty distracting, which can help with pain, but it also gets endorphins flowing around the body, making it better for reducing some aches (like migraines) than painkillers. According to researchers: "Sex can abort migraine and cluster headache attacks, and sexual activity is used by some patients as acute headache treatment." Don't have a partner? No worries; the same effects in pain relief can be achieved by reaching climax solo.

Laugh at a comedy show: Watching silly movies and laughing can genuinely make you feel better if you are experiencing pain. According to one study from the 1980s: "Movies were viewed by two groups (humor and non-humor) and differences between groups were noted on measures of perceived pain and affect. Humor is shown to provide significant benefits." And more recent studies back up those older findings.

Pain can ruin your day. But the alternative is a feeling-free life (some people are born without pain receptors) — which is a dangerous, life-threatening condition. So it's worth keeping in mind that pain is part of being human.

Friday, 23 September 2016

Marijuana And Pain: What's The Right Thing To Do?

Today's post from (see link below) takes another look at the marijuana for pain issue and asks the right questions but still leaves the author with a dilemma of his own. What most people don't know when they smoke a joint (or take it in another form) for chronic pain, is how the stuff actually works in the body. This article attempts to explain that in terms we can understand, without going too far into the chemistry of it all.Then he looks at marijuana from the point of view of its opponents and tries to present their point of view (without resorting to moral and societal judgment. All in all, a very interesting article for those who take, or are considering taking, marijuana to address their pain concerns.

Marijuana: Addictive or Medicine?
Posted on September 19, 2016 in My Story, Pain Medication  By Darisse Smith

For some suffering from chronic pain, marijuana is miracle medicine. For others, marijuana is a dangerous, addictive drug. Looking through the lens of chronic pain, is marijuana miraculous, harmful or something in between?

Let’s take a look how marijuana works on one’s system. The human body has its own endocannabinoid system, a series of receptors and binding sites that work against and with each other to reduce or increase different symptoms in the body such as pain, appetite and anxiety. The cannabis plant contains similar phytocannabinoids that act in a similar way, the most known being THC and CBD. One area of the brain that lacks cannabinoid receptors is the medulla, where breathing and respiratory processes are regulated. Since there are no cannabinoid receptors in this part of the brain, one cannot overdose on marijuana (though higher doses can create some odd and for some, uncomfortable side effects).

Anecdotal evidence and some scientific research demonstrate that marijuana can be effective for many different illnesses and symptoms. Marijuana can be effective for acute, chronic and neuropathic pain, anxiety, loss of appetite, different mental disorders and epilepsy, among others. The therapeutic benefits of marijuana are difficult to study since the FDA does not recognize marijuana as a medicinal plant, making scientific study difficult, limited and underfunded. There are a few scientific studies, though, such as one from the University of Michigan that recently conducted research into marijuana and its usefulness as medicine. The Michigan study demonstrated that among the pain patients tested who were on an opioid regimen, using marijuana led to increased quality of life and mobility, less side effects and even caused a reduction in opioid medication in some cases. Another study performed by Dr. Mark Ware at McGill University in Canada, marijuana provides reasonable pain relief without major side effects.

On the other side of the argument, there are those who view marijuana not as medicine but as a harmful, addictive and illegal drug. Opponents of marijuana use argue that the body’s endocannabinoid system, instead of being enhanced by marijuana is overwhelmed by the phytocannabinoids, causing impairment, paranoia, slow reaction time, euphoria and an increase in appetite. When one smokes marijuana, heart rate and blood pressure increase, and in young people, THC can impact development of the brain. Whether or not marijuana is addictive is up for debate, though many anti-drug websites equate addiction purely to physical tolerance. According to the National Institute on Drug Abuse, marijuana can create a physical tolerance leading to withdrawal symptoms such as restlessness and irritability in heavy users. “Of course, tolerance doesn’t mean addiction. A good definition found for describing addiction as it relates to marijuana is by Dr. Roger Roffman, professor of social work at the University of Washington: “Addiction results from a combination of biological and psychological factors that contribute to conditioned behavioral patterns that are very difficult to stop or resist.” According to a 2014 study conducted by the National Institute on Drug Abuse (NIDA), 4.176 million people used marijuana and of that number, 138,000 voluntarily sought treatment for marijuana use.

When one suffers from debilitating pain, finding pain relief which allows an acceptable quality of life is a life-long struggle. With opioids being under attack these days due to the prescription drug epidemic, marijuana can be a reasonable alternative for many. Others who may struggle with previous addiction will have to decide what therapy works best for them without serious risk of further addiction and negative consequences. This is my current struggle-do I use marijuana to treat my various ailments or, with my history of opioid addiction, do I keep looking? I’ll let you know what I decide.

Darisse Smith is a contributor to the National Pain Report. An Army veteran who has suffered from chronic pain for over a decade.

Thursday, 22 September 2016

New Cream In Development To Reverse Neuropathy: A Big Claim

Today's short post from (see link below) is a version of many other such articles that have suddenly appeared on the internet in the last week, announcing the development of a new trans-dermal ointment to treat neuropathy. It's short because frankly, there's not much to report and yet it has caught the imagination of the neuropathy Net. Basically, a sort of ganglioside (a molecule important in immunology) called GM3 has been found that contributes to neuropathic pain. The theory is that an ointment can be developed to reduce GM3 in the body, thus reducing neuropathy symptoms. The difference between this finding and other developments is that they claim that this can reverse the nerve damage instead of just treating the symptoms. That's a pretty big claim but because it's years away from becoming anything that will appear on doctors' prescription pads, or even human trials, so we can only wait and see. However, we're fairly used to this sort of 'breakthrough' news aren't we? A pinch of salt anyone!

Researchers develop ointment to reverse neuropathy in diabetic patients
Sep 15, 2016 | Katherine Davis

 More than 25 percent of type-2 diabetes patients suffer from neuropathy, a condition that causes numbness and nerve pain in the feet. But new research from Northwestern University has found a way to reverse the condition.

The study, published in Molecular Pain, gives hope to thousands of diabetic patients whom have high levels of GM3, a type of ganglioside that contributes to constant pain in their feet.

"We have such terrible treatments right now for the neuropathy of diabetes," said corresponding author Amy Paller, MD, the Walter J. Hamlin professor of dermatology at Northwestern University Feinberg School of Medicine and director of Northwestern's Skin Disease Research Center in Chicago. "We're basically only treating the pain. This is a novel pathogenesis-based approach that looks at what's causing the neuropathy and reverses that instead of just treating the pain."

After finding that by depleting GM3 through genetic modification prevented the development of neuropathy in mice, the researchers created an ointment to reduce the chemical and the enzyme that makes it.

The scientists compared the appearance and function of the mice’s nerves when they were exposed to ointment to when they weren’t. They tested their pain responses and found that when exposed to the ointment, their pain reactions were no different from mice that had low levels of GM3.

Going forward, the researchers want to further test the ointment on humans in clinical trials to conclude it has the same beneficial effect.

"If the studies look promising in mice, our long-term goal would be to further test safety and advance to human clinical trials to prevent and/or reverse the development of diabetic neuropathy," Paller said.

Wednesday, 21 September 2016

Dilemmas When Living With Nerve Pain

Today's post from (see link below) is a useful look at some of the dilemmas people living with chronic neuropathy (and thus chronic pain) have to face daily. It's based on the reality of situations and doesn't give clichéd answers, or tell you what you should think. It reminds us that we're not alone with these conflicts of interest: millions of people across the world are facing the same problems of living with chronic pain. It's the choices we make that determine the quality of our daily lives but they're not always easy and they're not always right.

More: Tough Choices You Face When Chronically Ill or in Pain © 2013 Toni Bernhard Posted Mar 10, 2013

Readers add to the list of tough choices for those with health problems.

On January 28th, I posted a piece called “5 Tough Choices You Face When Chronically Ill or in Pain.” I wrote it from my personal experience but was amazed to discover how many of you said it applied to you too. It seems as if we all face the same tough choices.

In this piece, I want to add to the list by sharing some of the feedback I received. That feedback resonated with me the way my first piece resonated with all of you. I found myself saying, “That’s me too!” And so, without further ado, here are MORE tough choices:

1. Do we ask for help with something we can do even though it will be difficult and may exacerbate our symptoms OR do “save up” our requests for help and use them only when there’s something that we absolutely cannot do?

People who raised this expressed two concerns. First, they don’t want to overburden their caregivers and other helpers. This concern cuts in favor of going ahead and doing what we can do even if there may be “payback” later.

But the second concern cuts in favor of asking for help even if we don’t absolutely need it. The concern is that, if others see us doing anything, they’re likely to assume we can do everything. “You went out to lunch, so I don't see why you can't go away for the weekend.” Knowing that this is the type of reaction we’re likely to elicit if we push ourselves to do even the smallest tasks leads us wonder if it wouldn’t be better to always ask for help.

I have this type of thing happen to me all the time. If people see me doing anything—even just sitting at our local espresso place—they assume I can do everything that others around me can do. If you remember my last piece, “What Kind of Thinker Are You?” you could say we’re victims of divergent thinking. That is, people assume that only one of two options applies to us: either we're sick or we’re healthy. This type of misunderstanding on the part of others is one of the reasons why the question of when to ask for help is such a tough one.

2. Do we stay with the local doctor who’s treated us for years but isn’t really helping OR to we go to the “expert” who is expensive and often hours away?

I've had to deal with this tough choice for almost 12 years now and I know some of you have been dealing with it for longer than that. We have to think about the money involved, the energy required to begin yet another new “doctor relationship,” whether we can handle another disappointment if it doesn’t work out. The list could go on.

3. Do we take pain medication to relieve disabling pain OR do we stoically put up with the pain because the medication makes us groggy and less functional?

I hate the side effects of pain medication, but sometimes it’s a tough choice: unremitting pain or a mind like silly putty. Neither choice is satisfactory but we still have to make it. Which choice we make on any given day may depend on several factors: what our “have to’s” look like, whether we’ll be with other people, etc.

Going along with this is the question of how to allocate pain medication if we’re only given a certain amount each month. Here’s what Carol, who has chronic migraines, said about this tough choice:

Insurance companies limit the amount of pain medication they will give us per month. The problem is that if you get 15-18 migraines per month as I do, the nine pills allowed must be doled out very carefully. So not only do I have a migraine, I have to assess it: maybe it’s not so bad that I need to medicate…but what if it gets worse? And how many pills have I already taken this month? If I take more than four by mid-month, I won’t have enough to get through to the end…but if I let it get too bad, then the medication doesn’t work as well and I am down an out for a couple of days.

4. How do we spend the little energy we have? Do we use it to do necessary things like washing the dishes OR do we use it to do something that’s fun?

Tasks pile up for us, from the dishes to the laundry; but it's also important to try and enjoy ourselves. It's always a tough choice to decide how to spend what little precious energy we have.

5. When people ask how we are, do we respond truthfully (“I’ve been bed bound all week”) and risk being judged negatively by them or being subjected to a lecture on what we should be doing OR do we say, “I’m fine,” and risk passing up a genuine opportunity to connect with someone else or, even worse, wind up feeling like we’ve betrayed ourselves?

This is similar to the tough choice I mentioned in the first piece: Do we talk openly about our health problems or do we keep them private? I raise it again because so many of you commented that you face the same dilemma…and how neither choice is satisfying. We want to share our lives with friends and family, but when our lives are centered around managing chronic pain or illness, not only may that not be what loved ones want to hear about, but it’s not what we always want talk about! Judith commented: “I wrack my brain sometimes trying to find something non-health related I can talk about. Some anecdote that doesn’t start with ‘When I was at the doctor…’” Judith said she said she found this “managing” of conversations to be utterly exhausting. I know how she feels.

I’ll close with a comment left by Martha on the first "tough choices" piece. She said that as she looked over my list of “tough choices” and answered them for herself, she realized that her answers would change over time…and then change again. She said: “So I will ask myself these same question a few times each year, look at any changes in my situation and adjust my answers accordingly.” Thank you for that wise counsel, Martha.

© 2013 Toni Bernhard. Thank you for reading my work. I'm the author of three books:

How to Live Well with Chronic Pain and Illness: A Mindful Guide (2015). The theme of "tough choices" is expanded on in this book.

How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013)

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers (2010)

All of my books are available in audio format from Amazon,, and iTunes.

Tuesday, 20 September 2016

Corydalis Yanhusuo: Plant Extract For Neuropathic Pain

Today's post from (see link below) comes once again from the world of nature and shows again how much undiscovered knowledge there is yet to be found regarding plants and animals and their pain-killing properties. We've had, scorpions, spiders and snakes plus various fish, whose toxins have all been found to be powerful painkillers via their influence on the brain and now we have Corydalis yanhusuo, which is a species of genus Corydalis and a pretty common or garden herbal plant. However, research has indicated that the alkaloid dehydrocorybulbine, extracted from the roots of the plant, can be helpful in reducing neuropathic pain. Another plus is that there seem to be no side effects at all and if it's being compared to morphine, that's a pretty big plus! Slightly worrying is the fact that this is not news. The plant has been highlighted before as a possible nerve pain relief (also on this blog) but there seems to be little progress on producing it commercially. Hopefully, this won't end up in the slush pile of pharmaceutical company research projects.  Read the short article to learn more.

Corydalis yanhusuo extract for use as an adjunct medicine for low to moderate chronic pain 
Date: September 14, 2016 Source: University of California, Irvine

Root extracts from the flowering herbal plant Corydalis yanhusuo, or YHS, has widely used for centuries as a pain treatment. Yet few studies have investigated how it works on different forms of pain, and little is known about its molecular mechanisms.

In a new study, Olivier Civelli, professor and chair of pharmacology at the University of California, Irvine, and colleagues show how YHS effectively treats different forms of pain.

Most notably it can reduce chronic neuropathic pain which is poorly treated with common medicines. They also show that YHS seems to not lose its potency over time, as happens with many analgesics. Study results appear in one open-access online journal, PLOS ONE.

The researchers analyzed YHS pain relief properties in mouse tests that monitor acute, persistent inflammatory and chronic neuropathic pain, respectively, while in vitro tests revealed its mechanism of action as a prominent dopamine receptor blocker. Interestingly, in mice that have no dopamine D2 receptor, YHS effect is weakened in neuropathic pain.

Dopamine is an important neurotransmitters that when released from nerve cells to send signals to other nerves. It is known to be involved in reward but studies have also shown that dopamine may play a role in maintaining chronic pain, and that removing dopamine-containing cells can reduce this pain.

Additionally, the researchers found that YHS use did not lead to tolerance. They administered YHS four times over a seven-day period and measured the mice responses in acute pain, noting that YHS kept its potency while morphine lost its.

Since YHS is a dietary supplement commercially available in the United States, Civelli suggests that it might be an adjunct medicine for alternative pain treatment. "YHS is not a highly potent medicine when compared to morphine," he said. "But I would propose that it can be used for low to moderate chronic pain."

Story Source:

The above post is reprinted from materials provided by University of California, Irvine. Note: Content may be edited for style and length.

Journal Reference:
Lien Wang, Yan Zhang, Zhiwei Wang, Nian Gong, Tae Dong Kweon, Benjamin Vo, Chaoran Wang, Xiuli Zhang, Jae Yoon Chung, Amal Alachkar, Xinmiao Liang, David Z. Luo, Olivier Civelli. The Antinociceptive Properties of the Corydalis yanhusuo Extract. PLOS ONE, 2016; 11 (9): e0162875 DOI: 10.1371/journal.pone.0162875

Monday, 19 September 2016

Strange Symptoms May Be Nerve Damage

Today's post from (see link below) comes from the point of view of a podiatrist (foot care specialist) and is a useful short description of what sort of symptoms might tell you you are suffering from nerve damage. There are many articles on the internet (and here on this blog) about what neuropathy is but sometimes you just need to know what the reason behind your troubling and strange symptoms is. If you feel that you may be suffering from neuropathy, go to your doctor. The symptoms alone should tell him or here that there is nerve damage involved.

How to Identify the Symptoms of Neuropathy
Posted on September 14, 2016 by Jameson Olive |

An estimated 20 million people in the United States suffer from some form of peripheral neuropathy, a condition that affects the normal activity of the nerves that connect the central nervous system — the brain and spinal cord — to the rest of the body.

Peripheral neuropathy can involve various different nerve types, including motor, sensory, and autonomic nerves. It can also be categorized by the size of the nerve fibers involved, large or small.

In the world of podiatry, most cases of peripheral neuropathy are found in the feet and develop from nerve damage caused by diabetes. Diabetic neuropathy can occur in both Type 1 and Type 2 diabetes. In Type 1 diabetes, the body does not produce the insulin necessary to convert glucose into the energy that the body needs. Type 2 diabetes, which is far more common, occurs when the body is unable to use insulin properly. It has been estimated that between 60 to 70 percent of diabetics will deal with some form of neuropathy in their lifetime, compared to only a 25 to 30 percent chance for non-diabetics.

The condition can also manifest itself in the feet as a side effect from certain medications, neurological disorders, arthritis or as a result from a traumatic injury. As of today, more than 100 types of peripheral neuropathy have been identified, each with its own symptoms and prognosis, and are classified according to the type of damage to the nerves have sustained.

So how do you know if you are suffering from peripheral neuropathy?

Symptoms of neuropathy vary depending on the type and location of the nerves involved. The symptoms either appear suddenly, which is called acute neuropathy, or develop slowly over time, called chronic neuropathy.

Dr. Ian S. Goldbaum, a board certified podiatrist with over 30 years of experience, sees over 500 patients a month suffering from neuropathy at his offices in Delray Beach and Boynton Beach.

According to Dr. Goldbaum, the most common symptoms of peripheral neuropathy found in the feet of his patients are cramping sensations, numbing sensations, tightening, tingling or burning, and an overall decrease in sensation. A change in how the toes feel sensations often also signals that something might be wrong.

Other symptoms may also include:
Muscle atrophy
Loss of coordination
Loss of reflexes
Feeling that you are wearing socks or gloves when you are not
Difficulty walking or moving your arms or legs
Muscle twitching
Skin, hair or nail changes.
Inability to detect changes in heat and cold

If you believe you are suffering from any of these symptoms, it is important to seek out your health care provider as soon as possible as these ailments might not only be a sign of peripheral neuropathy, but could also indicate the onset of an underlying disorder like diabetes. Early diagnosis and treatment offer the best chance for controlling your symptoms and preventing further damage to your peripheral nerves.

Follow Delray Beach Podiatry on Twitter @Delray_Podiatry

Sunday, 18 September 2016

Why Nerve Damage May Be Restored (In Some Cases) (Vid)

Today's video and explanation from (see link below) explains why nerve damage is almost always irreversible and in that sense is very useful. However, it could do with simple graphics to illustrate what she says (at breakneck speed!) and furthermore, she tends to concentrate on nerve damage as a result of accident or injury and in those areas, there is the possibility of some nerve restoration. The vast majority of neuropathy sufferers however, have the condition due to over 100 other causes than injury and for those people, nerve restoration is practically impossible. This video, while useful, tends to blur the edges a bit and can confuse you if your nerve damage comes from common causes such as diabetes of chemotherapy, or HIV or whatever. In cases where direct injury is not involved, nerve damage restoration is almost impossible at the moment (although stem cell therapy is offering hope).

Reversing Nerve Damage: Central Nervous System Inhibits Cell Regeneration, But Stem Cell Treatment May Help
February 27, 2016 12:12 PM By Lizette Borreli


Our nervous system is involved in everything our body does, from maintaining our breath to controlling our muscles. Our nerves are vital to all we do; therefore, nerve pain and damage can heavily influence our quality of life. In Discovery News' latest video, "Why Can't We Reverse Nerve Damage?" host Lissette Padilla explains the central nervous system (CNS) has certain proteins that inhibit cell regeneration, because each cell in the nervous system has a unique function on the pathway, like a circuit, and can't be replaced.

The nervous system can be divided into two sections, with the brain and spinal cord making up the CNS. Nerves are made up of sensory fibers and motor neurons, which comprise the peripheral nervous system. Nerve cells are made up of many parts, but they send signals through threads covered in a protective sheet of myelin. These threads are called axons.

Axons are the long part of the cell that reaches out to neighboring cells to send information down the line. Schwann cells, found only in the peripheral nervous system, are glial cells that produce protective myelin. Schwann cells could potentially clean up damaged nerves, which could make way for healing process to take place and new nerves to be formed.

The problem is these Schwann cells are missing from the CNS. The CNS is comprised of myelin-producing cells called oligodendrocytes. And these cells don't clean up damaged nerve cells at all, hence the damage problem.

However, research is currently underway to examine the potential success of system cell treatment, where stem cells are injected directly at the injury site. It will still take a few years to see the results of such trials, but since the peripheral nervous system doesn't have the same blocking proteins that the CNS has, the idea is Schwann cells could help heal the damage.

So it is possible to regrow nerves, albeit slowly. For instance, if you cut a nerve into your shoulder, it could take a year to regrow. By that time, the muscles in your arms could become atrophied. Researchers are working on helping the body heal faster.

Saturday, 17 September 2016

Fluoroquinolone Antibiotics: A Direct Cause Of Neuropathy...Discuss!

Today's post from (see link below) is an impassioned plea for common sense regarding a subject that has been 'current' for years and yet seems to produce no concrete results or changes, despite the condemnation of the FDA. Fluoroquinolones are dangerous if you already suffer from neuropathy and just as dangerous if you don't, yet despite the mountain of evidence that backs up this opinion, doctors still prescribe them as antibiotics of choice for a host of bacterial infections. This article asks why and this blog supports that question 100%. If a personal plea as in this article doesn't persuade you and you need more scientific evidence; there are other articles here on the blog on this subject (use the search facility to the right of the page) but even if you don't do any more research, always ask your doctor if a fluoroquinolone antibiotic is the right choice and ask him or her to prove why!

NEW FDA WARNING for Cipro, Levaquin, Avelox-Permanent Peripheral Neuropathy- Mixed Emotions
February 17, 2016 admin

The FDA announced on August 15, 2013, that fluoroquinolone drugs such as Levaquin, Cipro and Avelox will be required to change packaging inserts to contain a warning for severe, permanent and disabling peripheral neuropathy. The FDA states that the damage may occur very soon into the administration of the drugs and the damage may be permanent.

If you as the reader, are not familiar with exactly what peripheral neuropathy is, here is the FDA’s description: Peripheral neuropathy is a nerve disorder occurring in the arms or legs. Symptoms include pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position. It can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped or be permanent. Permanent. Yes, forever. Never going to stop burning for the remainder of your life. It’s the feeling of spontaneous human combustion with out all the nasty fire and flames. Holy cow. How is this even acceptable?

I have very mixed emotions about the FDA’s announcement today. As a victim of Fluoroquinolone Toxicity and peripheral neuropathy, I am caught between being pleased and being angry. Very, very angry. Most victims, and I know thousands of them, will tell you that they told their doctor about their peripheral neuropathy as well as their other grocery list of horrific symptoms and doctors simply smirked and informed them “These drugs don’t cause that”. Patients were then recommended an anxiety drug, psychotropic drug or asked if someone at home was abusing them. I wonder where doctors get their information regarding drugs that they throw out like beads at a Mardi Gras parade? Some physicians are completely unaware of the Black Box warning placed on fluoroquinolones in 2008 for tendon tears and those who know about it never ask the tendon tear victim “Did you take a quinolone?”. Victims who themselves have become aware of fluoroquinolones and their resulting tears (God bless the internet) have informed their doctors. Not many victims report that their doctor informed THEM that they had a tear as a result/side effect of the drug. Doctors are in denial and they are in deep. There is also money. Yes sireeeee! Good old money. It’s always found where shady deals are done and pacts are made with the Devil. If you don’t believe me Google Dollars for Doctors, put in your physicians name and magically (God bless the internet, again), you are informed as to how much he/she made from drug companies this last year. You also get too see which drug companies are lining the pockets of the people we entrust with our lives to. It’s business. BIG business, so don’t kid yourself for a moment that it’s not.

My next thought is the FDA is covering it’s hiney and trying to cover it fast. Victims are becoming more and more vocal, gathering in groups on Facebook (God bless the internet, again), having Floxie meet ups, organizing in an underground network. If you as the reader are not familiar with the term “Floxie”, it is a darling colloquialism fashioned by author Stephen Freid in his best selling book Bitter Pills-Inside the Hazardous World of Legal Drugs . The term has probably stuck because” Floxie” is much cuter than “disabled” or “eternally suffering human being”. Websites devoted entirely to flouorquinolone victims abound. Google Cipro is Poison or Death by Levaquin or even just the drug names and you will get more than you can wrap your head around. These groups have initiated petitions, organized a lawsuit registry for a potential lawsuit and last May, marched on the Washington Capitol and met with legislators proclaiming the dangers and devastating side effects of these drugs. Victims will no longer take this sitting down. They are no longer being strong armed into believing they are the one in a million, the 1% or just genetically inferior. Lets not forget Medwatch, the FDA’s reporting system. Floxies are reporting in massive numbers and re-reporting each year that they are symptomatic from the drug. (To file a report go to There is a lot of boat rocking going on in the Flox world these days and I think the FDA is feeling it.

The warning also states that this is only for injections or oral doses. Many victims report the same symptoms of fluorquinolone toxicity by IV and eye drops and the symptoms are exactly the same. My own mother was floxed with Zymaxid eye drops for cataract surgery. Zymaxid is the eye drop form of Gatifloxacin which was banned by the FDA in 2006 for severe hepatic failure as a result of the drug. It’s poison orally but go ahead and drop it in your eyes and it’s fine. HUH??? The reality is the results are the same. Children are also given these drops for pink eye and ear infections with regularity. The results are the same but young children are not fully capable of communicating their symptoms so many of the symptoms are unnoticed, blamed on behavior or the illness for which the drugs were prescribed. With the ear drops, the busted ear drum is the only obvious tell tale sign of a child’s severe reaction.

I tend to write very tongue -in-cheek when I write about these drugs. The reality is pretty horrific and terrifying. The day in and day out suffering of Fluoroquinolone Victims should be recognized by doctors, family members, husbands, wives, partners and society as a whole and yes, the FDA. So is a warning on packaging for drugs that steal lives seems almost trivial and somewhat of an insult. It also feels like redemption for victims that have been called crazy by family members or hypochondriac by doctors. I have mixed emotions. It’s a win but it feels like a “gimme”. Like the FDA is tossing a bread crumb and ignoring all the other disabling effects of these drugs. My only hope is that doctors will no longer use these drugs on high risk patients with known chronic diseases like diabetes, Crohns, ulcerative colitis and Lyme.

It looks like a win but it feels like a loss. One thing I do know it that it not GAME OVER. Not by any measure.

Find help here
: Fluoroquinolone Victims Advocacy Network – sign the petition for a BLACK BOX WARNING for peripheral neuropathy.

About me, the author. My name is Erin Wilson and I am an advocate and peer counselor for victims of fluoroquinolone toxicity. A two time victim of Levaquin, I have lived it and seen it all. I now counsel victims in recovery and make the public aware of the devastating effects of these drugs. If you have been harmed by Cipro, Levaquin or Avelox or any fluoroquinolone drugs, there is help.

Friday, 16 September 2016

Are South Africans With HIV And Neuropathy A Tougher Breed?

Today's post from (see link below) looks at present day South Africans living with HIV and neuropathy (among other chronic pain conditions). It shows that despite the pain, most HIV patients are pretty resilient and don't let their condition affect their daily function nearly as much as expected, or in comparison with other conditions including pain as a component. The question is why? Are HIV patients more resilient as a whole; or does it have something to do with the fact that South Africans (and many other countries on the continent) are more used to dealing with adversity? Are South African HIV patients battling through the pain because of economic pressure to 'grin and bear it'? It's an interesting article raising questions that 1st World countries may also ask themselves.
Study finds South Africans living with HIV more resilient despite chronic pain
Published on September 14, 2016 at 2:21 AM ·

When one thinks about chronic conditions that are commonly painful, HIV doesn't typically spring to mind. However, more than 50% of HIV-positive individuals experience a painful condition like headache, chest pain or neuropathy, and that pain is frequently experienced as moderate to severe in intensity.

What struck researchers from the Brain Function Research Group (BFRG) at Wits University as odd was that despite this high burden of pain in HIV, a couple of papers have emerged suggesting that, having asked patients, functional interference (having difficulty with things like walking or going to work) was not as great as they might have expected. One of these papers was from the BFRG and had been completed locally in Johannesburg, South Africa.v

To investigate whether pain does actually affect function in HIV (as it does in many other clinical conditions), researchers Dr Antonia Wadley, Emeritus Professor Duncan Mitchell and Associate Professor Peter Kamerman from the BFRG, based in the School of Physiology, Faculty of Health Sciences at Wits, conducted a cross-sectional study.

The results from the study, titled: Resilience does not explain the dissociation between chronic pain and physical activity in South Africans living with HIV, are published today, 13 September 2016, in the journal PeerJ.

To explain why pain may not affect function, the researchers first put it down to African patients being resilient, i.e. the ability to cope with adversity.

Explains Wadley: "No one has assessed resilience in people living with HIV and chronic pain before. We hypothesised that people living with HIV would be generally be pretty resilient, and those who were more resilient would be more active and report lower pain intensity."

Measuring resilience in HIV-patients objectively for the first time

For the study, the researchers recruited HIV-positive patients from an HIV clinic in Johannesburg: half with chronic pain (defined as having had pain most days for at least three months) and half without. They then assessed resilience and, as well as asking patients about their activity, the researchers measured it objectively for the first time in a subset of patients using accelerometers, which are like sophisticated pedometers. They also asked the patients about their day-to-day worries.

"It turns out," Wadley says, "that we were right on one thing, HIV-positive patients in our study were really resilient, but our hypothesis was wrong: being more resilient did not associate with being more active or having lower pain intensity. In fact, the activity results astounded us. Not only was patients' activity not as affected as one might expect, it wasn't affected at all."

There was no difference in activity intensity, duration, or time spent at different intensities of activity between those with and without chronic pain. "This is something you just don't see in other types of long term pain," she adds.

The researchers then looked at how frequently patients worried about their health, money, food and family. "We thought that if patients were worried about money and having enough food, that pain might be relegated to a lower priority." They found that patients in chronic pain worried more frequently about each of these things compared to their pain-free counterparts and that health was lowest down the list.

"So it really does appear that if you are poor, pain may be relegated to a lower priority. Indeed, our analysis showed that worrying more about food associated with higher levels of activity," says Wadley.

Going forward

The researchers also asked the patients in pain what else they worried about and who they had told about their pain. "It turns out that HIV-related stigma is a real problem and that half the patients in pain had not told their closest friends and some not even their family about their pain, for fear that it might reveal their HIV status."

Wadley says it thus seems that economic stresses and fear of HIV-related stigma may drive people to maintain high levels of activity, even when they are in severe pain.

"What's not clear is whether this kind level of activity in the face of pain is helpful or harmful and that's something we will be looking into next," she adds.


University of the Witwatersrand

Wednesday, 14 September 2016

Do You Qualify For Sickness Benefits Due To Neuropathy?

Today's post from (see link below) highlights the astonishing fact that in some so-called developed countries, people with severe neuropathy can still have problems qualifying for social benefits, including sickness and disability benefits. It's clear there's still a lot of work to do convincing health authorities across the world that neuropathy is a chronic condition, often associated with chronic pain and disability. How does your country treat you if you have severe nerve damage? Do you still have to jump through bureaucratic hoops to convince people who haven't a clue about the disease that you are not capable of normal daily function in many areas? If so isn't it about time we mobilised ourselves to publicise the plight of millions of neuropathy patients? This article presents the situation in the UK anno 2016.

Social Security Help For Peripheral Neuropathy Related Disability 
By Jacqueline Marshall, Sep 9, 2016

Diabetes is a common cause of peripheral neuropathy, a nerve condition involving numbness, weakness, and pain most often in the hands and feet.

Symptoms of peripheral neuropathy (PN) can become so severe they prevent some sufferers from working. For these individuals, the Social Security Administration (SSA) offers two assistance programs:
Supplemental Security Income (SSI) helps people with low, or no income that cannot work because of a disability.
Social Security Disability Insurance (SSDI) aids those who worked before becoming disabled. The qualifying number of years a person must work to obtain this benefit depends on their age. Older applicants are expected to have longer employment records than younger applicants.

Those who meet the basic criteria for these programs are subsequently assessed to see whether they medically fit the disability definition outlined in the SSA’s “Blue Book.”

PN Disability Criteria

The Blue Book contains lists of the physical and mental impairments deemed severe enough to prohibit gainful employment. One section of this book (section 11.14) describes the medical criteria specific to PN patients.

Those with PN must demonstrate, for instance, a “significant and persistent disorganization of motor function in two extremities, resulting in sustained disturbance of gross and dexterous movements, or gait and station...”

The “disorganization of motor function” includes symptoms such as muscle weakness, paralysis, involuntary movements, loss of control, sensory problems, interference with the use of fingers, arms, and hands, and problems with locomotion. 

Info To Gather

Individuals with PN who cannot work, but do not medically quality for disability benefits, might still be granted assistance by having their physician fill out an RFC, or Residual Functional Capacity assessment. On the RFC a doctor specifies, for example, how long a PN patient can walk, or stand, in what ways the hand or gait functions are limited, and how much weight he or she can lift. This information lets the SSA know what a person is actually capable of doing.

Along with the RFC, those applying for benefits should submit as much medical evidence of their PN as can be gathered, such as:
Medical exam histories, and blood test results.
Vibration and monofilament test outcomes.
Skin biopsy results, nerve conduction studies, and electromyography.
QSART (quantitative sudomotor axon fiber neuropathy) outcomes.
A complete PN medication and treatment history.

This medical information can be mailed with a disability application, or the SSA will gather medical evidence for individuals who sign a release. However, sending the evidence with the application may speed the assessment process—which generally takes five months. Those denied assistance can appeal the ruling.

To get the application ball rolling you can visit a local Social Security office, call the Social Security Administration at 1-800-772-1213, or get more information and apply online at the SSA website (link below).

Source: Foundation for PN/Deanna Power ; SSA Disability Info/Apply Online

Tuesday, 13 September 2016

Is Your Diet Directly Contributing To Your Neuropathy?

Today's post from (see link below) written by the ever-reliable Dr John Hayes Jr, looks at nutritional neuropathy; one of the more common causes of neuropathy, if you have ruled out most of  the causes from other illnesses. Basically it means that you are suffering nerve damage from a lack of specific nutrients in your system and that comes from dietary deficiencies. The article explains how nutritional neuropathy works and offers various means to address it. Worth a read if you're worried that your diet and life-style choices may be contributing to your nerve damage.

Combatting Nutritional Neuropathy – A Healthy Diet Is Your Best Weapon 
Posted by john on July 25, 2016

If you’ve been diagnosed with neuropathy as a result of[1]

• Diabetes
• Cancer
• Lupus
• Shingles
• Exposure to toxins
• Lyme Disease
• Repetitive stress injury

We don’t need to tell you how miserable the symptoms can be…

If you

• Take your medication…
• Take precautions to account for muscles weakness or loss of strength in your arms and legs…
• Do whatever your doctor tells you to do and your symptoms still aren’t improving.

In addition to the neuropathy caused by your illness, you could be suffering from nutritional neuropathy.

What Causes Nutritional Neuropathy?

One of the leading causes of nutritional neuropathy is vitamin deficiency, especially Vitamin B12. If you don’t eat meat, dairy products or even fish, you might not be getting the vitamins you would normally get from those foods.

If, in addition to your underlying illness, you also suffer from

• Anemia
• Gastritis
• Crohn’s disease
• Other chronic digestive problem

Your body is probably not getting the nutrition it needs from what you’re eating. That can lead to nutritional neuropathy.

Any condition you have that affects your body’s ability to absorb the nutrients and vitamins from your food can lead to nutritional neuropathy. And that just makes a bad situation worse if you already have some other type of neuropathy caused by one of the illnesses we just mentioned.

How Nutritional Neuropathy Affects Your Body

Even though the name implies that nutritional neuropathy is linked to your digestive system, it can affect much more than that.

Your body runs on what you feed it. If your body isn’t getting the nutrition it needs, the malnutrition begins to affect every system in your body. Eventually it affects the peripheral nervous system. The nerves are damaged and no longer function properly.

If your nutritional neuropathy affects your autonomic nervous system, it can lead to problems with blood pressure, an inability to control your bladder or bowels, or even sexual dysfunction.

If your nutritional neuropathy affects your sensory nerves, you can have problems with your sense of touch – not just possibly an inability to feel sensation but a heightened sense of sensation. Imagine the sheets on your bed feeling like sand paper against your skin.

If your nutritional neuropathy affects your motor nerves, you can lose the ability to control your muscles, you could lose your balance and the muscle cramps you experience from your neuropathy can be even worse.

Even if your neuropathy is being treated with physical therapy or even drug therapies, you still need a healthy diet to give your body what it needs to heal.

If you want to give yourself the best possible chance of avoiding nutritional neuropathy, you need the right diet.

Good Nutrition Can Be Your Secret Weapon

The very first thing you need to do is make sure you’re giving your body the right tools to fight back against nutritional neuropathy. That means a healthy diet and managing your digestive condition.

Talk to your doctor, preferably a NeuropathyDR® clinician, about all of your underlying medical conditions. Your diet will not only need to include the vitamins and minerals, but you also need to take into account any digestive problems you may be experiencing that will prevent your body from absorbing the good stuff you put into it.

A healthy diet should include[2]:

• Whole grains and legumes to provide B vitamins to promote nerve health. Whole grains promote the production of serotonin in the brain and will increase your feeling of well-being.
• Fish and eggs for additional vitamins B12 and B1.
• Green, leafy vegetables (spinach, kale, and other greens) for calcium and magnesium. Both of these nutrients are vital to healthy nerve endings and health nerve impulse transmission and, as an added bonus, they give your immune system a boost.
• Yellow and orange fruits and vegetables (such as squash, carrots, yellow and orange bell peppers, apricots, oranges, etc.) for vitamins A and C to help repair your skin and boost your immune system.
• Sunflower seeds (unsalted), avocados, broccoli, almonds, hazelnuts, pine nuts, peanuts (unsalted), tomatoes and tomato products, sweet potatoes and fish for vitamin E to promote skin health and ease the pain of nutritional neuropathy.
• Ask your neuropathy specialist for recommendations on a good multivitamin and mineral supplement to fill in any gaps in your nutrition plan.

Foods you should avoid:

• Coffee and other caffeinated drinks.
• Fried foods and all other fatty foods. Fatty foods suppress the immune system and that’s the last thing you need when you’re fighting nutritional neuropathy.
• Control the amount of animal protein you eat. High-protein foods elevate the amount of dopamine and norepinephrine which are both tied to high levels of anxiety and stress.
• Avoid drinking alcohol. Alcohol consumption limits the ability of the liver to remove toxins from the body and can make a bad situation worse.

Talk to your local NeuropathyDR™ treatment specialist for a personalized diet plan to help you to help your body to heal with the right nutritional support for nutritional neuropathy and your digestive issues.

We hope this gives you some tips to get started on the road to putting nutritional neuropathy behind you. Working with your medical team, including your local NeuropathyDR™ specialist, to design a nutrition plan tailored to your specific needs is a great place to start.

For more information on recovering from nutritional neuropathy, get your Free E-Book and subscription to the Weekly Ezine “Beating Neuropathy” at


Monday, 12 September 2016

Charcot-Marie-Tooth Disease: An Inherited Neuropathy

Today's post from (see link below) is both complex and easy to understand and talks in full about an inherited form of neuropathy with a strange name but serious problems. Charcot-Marie-Tooth Disease (CMT) is the nerve disease and it is yet another form of neuropathy that can take months if not years to diagnose. You may feel that because you haven't been told that your neuropathy is C.M.T. you don't need to read this article but believe me you'll recognise so many of the symptoms and treatments, you'll feel right at home here (although with C.M.T there is much more emphasis on muscular and foot problems). Many people learn that they have C.M.T. long after being told they have idiopathic neuropathy (no cause can be established) and have been sent home with the necessary pain prescription, to make the best of it, so it's important for your doctor or neurologist to at least rule it out. The treatment and symptoms are much the same as other neuropathies, so with a bit of luck, you won't be missing out due to a mis-diagnosis but nevertheless, establishing the true nature of your neuropathy is important to all concerned, if only because it validates your pain and discomfort. If you already have C.M.T. this article will fill you in on information you may not have received from your doctor - worth a read for everyone.

Charcot-Marie-Tooth – A Very Painful Disorder
By Jeffrey Bado, D.O. | September 3, 2016


During my career as a specialist practicing General Internal Medicine, with a focus on Pain Management, I encountered many unusual causes of chronic pain. In most of those cases, the patients were referred to me for management of their chronic pain and had already been diagnosed by various sub-specialists.

One of the most challenging syndromes I faced in clinical practice was an inherited condition called Charcot-Marie-Tooth Disease (CMT). Due to the clinical frequency of this disorder I have decided to write this monograph entitled, “Charcot-Marie-Tooth – A Very Painful Disorder.”
All of the cases of CMT that were referred to me had a diagnosis and ample medical records.

Patients were usually referred to my practice as a last desperate attempt at their pain management.

Charcot-Marie-Tooth disease is a neurological disorder named after the three physicians who first described it in 1886 — Jean-Martin Charcot of France, Pierre Marie of France, and Howard Henry Tooth of the United Kingdom.

CMT is the most commonly inherited peripheral nerve disorder in the U.S. affecting about 1 in 2,500 people. It affects more than 250,000 Americans.

Since this condition is frequently undiagnosed, misdiagnosed or diagnosed very late in life, the true number of affected persons may actually be higher.


Tracey (her name has been changed) came to my office on referral from a friend. She was siting patiently in the exam room with a “quad cane” at her side when I first interviewed her.

“Hello Tracey, I see you have brought a very extensive copy of your medical records with you. The records indicate that you have been diagnosed with Charcot-Marie-Tooth (CMT) disease.

How may I help you?” I said somewhat uncertain of just what her condition was.

“Yes, I have been to a number of Doctors for my condition. None of them seemed to know what I have. It took 7 years and 7 different Doctors before anyone could figure out my case,” she said with a frustrated tone of voice.

“Do you know what CMT is, Dr. Bado?”

It was never my style to pretend to know something when I didn’t…”Tracey, to be honest with you, I remember the name from medical school but I have never had a case with this disease.”

“But, if you will work with me, I will research what you have and on your next visit I will be fully acquainted with it,” I said a little embarrassed at my ignorance about her disorder.

Tracey smiled, “You are the first Doctor I met who admitted that they didn’t know what it was. I think you and I are going to do just fine.”

I was relieved that I had not disappointed her.

“Tracey, why don’t you tell me just how you feel and maybe I can begin some therapy today?” My goal with every new patient in my practice was to establish trust as early as possible.

I believe the best way to do that is to let a new patient tell their story without any time pressure or interruptions. Here is what she told me over the next hour…

Tracey had been in good health until she was in her mid-30s when she noticed she began to stumble without warning. This happened even when she was walking on flat surfaces that most people would not stumble on.

Her diagnosis of CMT had led to her falling, without warning, occasionally. She had embarrassed herself at several social gatherings with friends because of this.

Her husband had even accused her of drinking too much alcohol at a party where she had fallen…he was embarrassed too.

She went to her Family Doctor who could not find anything wrong with her. Her husband was becoming skeptical and did not want to go to social functions with her.

This put an additional strain on their already fragile marriage.

Over time her condition worsened. After a year she began to notice her feet were “numb” to the touch but felt as if they were always burning.

There were no visible physical changes to her feet though. She had always had “high arched” feet but was able to walk just fine.

Tracey found she was unable to wear high heeled shoes anymore as her ankles would “give out.” She went to another Family Doctor who spent 10 minutes with her and told her she was “just clumsy.”

On several occasions she went to the Emergency Room of her local community hospital when the burning of her feet became unbearable. The Doctor spent 2 minutes with her, ran a few blood tests looking for “arthritis”, and gave her some Motrin.

It didn’t help…she was getting worried.

Her social life was becoming unmanageable as she began to isolate herself due to her frequent stumbling and falls. Furthermore, she was unable to stand for long periods at work (she worked on an assembly line) and had to quit.

Her husband was sure she was just malingering since none of the Doctors could identify what was wrong with her. Her trust in him waned and she no longer wanted to be physically intimate with him.

By the time she was in her early forties she had pain in her feet all the time. Tracey had difficulty just walking around her home, and had fallen down the stairs from the second floor several times.

The Family Doctor she was seeing finally referred her to a Neurologist. In one visit he diagnosed her with CMT and told her the bad news…she had an incurable disease that will only get worse.

He offered her little in the way of pain relief. He told her she would just have to “live with the pain.”
Tracey considered suicide but, the recent birth of her grand-daughter kept her from attempting to end her life.

Tracey’s story with CMT is not unusual. Neuropathic conditions often have little in the way of observable abnormalities.

This makes it difficult for an untrained person to be able to relate to a person suffering from CMT. In fact, even Doctors are often fooled by the lack of physical findings.

Let’s discuss for a moment just what is happening to the human body with Charcot-Marie-Tooth disease. 


In the normal human body, nerves are attached to muscles where the muscle is then “given instructions” for movement from the nerve. Nerves that are required to transmit signals rapidly are covered with a form of “insulation” called myelin.
Myelin allows the electrical signal to travel rapidly along the tail of the nerve called an axon.

If the myelin or the axon itself is in anyway disrupted, the transmission of the nerve signal is affected. If the nerve signal is affected the muscle that is relying on the signal for instructions will not function properly.

Walking is a very complicated function and requires precise coordination of the muscles of the legs and feet to occur.

Furthermore, the information from the bottom of the foot is sent up to the spinal cord and brain for precise adjustment of balance during walking. Simple numbness of the bottom of the foot can make walking difficult.

Numbness often preceeds weakness in people with CMT disease and may not be noticed by the person suffering from the disease in the early stages.

CMT can affect the myelin, the axon proper, or both. The more disruption of the myelin and axon, the more dysfunction that occurs.
The disease process is unrelenting in people with CMT and is not visible in the early stages.

In CMT there is a genetic alteration that renders the myelin dysfunctional and/or the mitchondria inside the axon defective (mitochondria manufacture energy). These 2 processes can result in what is called a neuropathy.


The diagnosis of CMT is suspected when the following history, symptoms, physical signs, and diagnostic findings are manifested by a patient:

People with CMT will often relate a history of difficulty walking, running, unprovoked falling, leg weakness or numbness, hand weakness or numbness, and loss of fine motor movement of the fingers.

There may be a family history of similar symptoms (or perhaps even a diagnosis). It is not unusual for people to have a long delay in diagnosis if their examining Doctor has never seen a case.


1)Decreased sensitivity to heat, touch, or pain of the feet and/or hands.

2)Muscle weakness of the feet, lower legs, or hands.

3)Trouble with fine motor skills of the hands.

4)Foot drop

5)Loss of muscle mass of the lower legs.

6)Unprovoked tripping or falling.


8)High Arched Feet

9)Flat Feet

10)Loss of Patellar and Achilles reflexes.

Needle Nerve Conduction/Electromyogram

The classic diagnostic study for CMT is a nerve conduction/electromyogram study (NC/EMG). This is performed by inserting needles into nerves and muscles of the areas already in pain and placing a small electrical charge through the needles to stimulate a nerve or muscle.

The response of the nerve or muscle is graphically recorded and interpreted by a physician.

The NC/EMG is an uncomfortable study. Imagine having needles inserted into areas that already are painful.
Few patients will subject themselves to more than one NC/EMG after having experienced the discomfort of the first.

The graphic findings are diagnostic for nerve or muscle dysfunction. The study is limited by the discomfort it causes, the precision of the needle insertion, and can only detect larger nerve fiber dysfunction.

Small nerve fiber abnormalities can be missed with this type of diagnostic study.
Neural Scanning

There is a fairly recent improvement in the detection of nerve dysfunction called Neural Scanning (NS). NS does not require needle punctures.

The electrical current in NS is applied via skin pad electrodes. The particular electrical frequency of stimulation used allows for the measurement of both large and small fiber nerves (remember needle NC/EMG can only measure large nerve fibers).

In this way, early detection of neuropathic changes in very small nerve fibers (called C fibers) can be detected with Neural Scanning. Furthermore, it is a painless way to stimulate nerve fibers.

I prefer this method of nerve and muscle stimulation as the patients tolerated it much better. They were more likely to allow me to recheck their results with repeat NS after they had been on therapy.
Most of my patients viewed the needle NC/EMG as torturous, but readily accepted multiple Neural Scans.

The following diagnostic studies are also performed at the discretion of the examining physician:
Nerve Biopsy: this looks at the health of the nerve microscopically. Obviously, the patient requires a minor surgical procedure for this, possibly causing more pain.
MRI imaging: usually of the feet and lower legs. This may show atrophy in a pattern consistent with demyelination or axonal injury.
X-Rays of the feet and/or hands: prolonged and severe neuropathy can actually result in resorption of the toes and fingers. By the time this test is positive the disease is usually quite advanced.
The definitive way to specifically diagnose CMT is with genetic testing.

Molecular genetic testing is currently available for CMT1A, CMT1B, CMT1D, CMT2E, CMT4A, CMT4E, CMT4F and CMTX.

The following section is an in depth review of the present combinations of genetic abnormalities found in CMT.


Today, CMT is precisely diagnosed by genetic testing. There are many sub-types as assigned by the specific genetic defect.
Each sub-type is classified according to the specific genetic defect, where the main disorder resides (whether of the nerve axon or of the myelin sheath around the axon), age of onset, severity of dysfunction, and body parts affected.

The most recent classification is as follows:
CMT1A: A subtype of CMT1, called CMT1A (caused by a duplication in the PMP22 gene on chromosome 17) accounts for around 60 percent of CMT1 cases, making it the most common subtype of CMT1. The PMP22 gene encodes for peripheral myelin protein, and disruption of this gene leads to a dysfunctional myelin sheath on nerves.

CMT1A patients usually present with typical CMT onset within adolescence, but remain ambulatory with no reduced life expectancy.
CMT1B: CMT1B is the second most common subtype of CMT1. CMT1B is caused by a defect within the MPZgene, which lies on chromosome 1.

The MPZ gene produces myelin protein zero, and disruption of this gene also causes defects within the myelin sheath. CMT1B patients have onset and symptoms similar to those of CMT1A patients, although there is a wide range of variability within CMT1B.
CMT1C: caused by defects in the LITAF gene.
CMT1D: caused by defects in the ERG2 gene.
CMT1E: caused by defects in the PMP22 gene, which is also associated with CMT1A. Instead of having a duplication of the normal PMP22 gene, CMT1E patients harbor different genetic abnormalities called point mutations within the PMP22 gene.
CMT1F: caused by defects in the NEFL gene.
CMTX: caused by mutations in the gene for connexin 32, which normally codes for a protein located in myelin, the insulating sheath that surrounds nerve fibers.

Because this form of CMT is X-linked, it affects males more frequently than females (all other forms of CMT affect males and females equally).
CMT Type 2: (CMT2) is a subtype of CMT that is similar to CMT1 but is less common. CMT2 is typically autosomal dominant, but in some cases can be recessive.

CMT2 is caused by direct damage to the nerve axon itself in comparison to CMT1 which results from damage to the myelin sheath insulating the axon. CMT2 is commonly referred to as “axonal” CMT.

CMT2A is the most common subtype of CMT2 and is caused by defects in the MFN2 gene. The MFN2 gene encodes for Mitofusin 2, which is a protein involved in the fusion of cellular mitochondria.

Other more rare forms of CMT and their gene defects include:
CMT2B: caused by defects in the RAB7 gene.
CMT2C: caused by defects in the TRPV4 gene.
CMT2D: caused by defects in the GARS gene.
CMT2E: caused by defects in the NEFL gene.
CMT2H: caused by defects in the HSP27 gene.
CMT2I: caused by defects in the HSP22 gene.
CMT3: severe, early onset CMT is a sub-type of CMT that is a particularly severe variant of the disease. Other terms used to describe this variant include Dejerine-Sottas disease, and congenital hypomyelinating neuropathy.

Severe, early-onset CMT can be inherited in either an autosomal dominant or recessive pattern.

CMT3 is a severe neuropathy with generalized weakness sometimes progressing to profound disability, loss of or changes in sensation, curvature of the spine and sometimes mild hearing loss.

Severe, early-onset CMT begins in infancy or early childhood, and progresses slowly. Severe disability may eventually occur.

CMT3 is caused by defects in the genes for proteins found in axons or in the genes for proteins found in myelin. Some of these same genes also cause CMT1 and CMT2 such as PMP22, MPZ, and GJB.
CMT4: a rare subtype of CMT, a genetic, neurological disorder that causes damage to the peripheral nerves and tracts of nerve cell fibers that connect the brain and spinal cord to muscles and sensory organs. CMT4 is a subtype of CMT that is inherited in an autosomal recessive pattern.

CMT4 is caused by defects in the myelin sheath which insulates the axon. Symptoms are generally more severe than in CMT types 1 or 2.

There are sub-types for this severe type of CMT also:
CMT4A: caused by defects in the GDAP1 gene.
CMT4B: caused by defects in the genes MTMR2 (CMT4B1), or MTMR13 (CMT4B2).
CMT4C: caused by defects in the SH3TC2 gene.
CMT4D: caused by defects in the NDRG1 gene.
CMT4E: caused by defects in the EGR2 gene.
CMT4F: caused by defects in the PRX gene.
CMT4H: caused by defects in the FDG4 gene.
CMT4J: caused by defects in the FIG4 gene.
Obviously, the genetic types of CMT are very complex and really do not affect the treatment of the disease. 


As CMT is presently incurable, treatment is aimed at reducing pain, limiting orthopedic complications, improving functionality, treating depression, and adjusting to the emotional/social isolation that can occur with this devastating illness.

I recommend my article on, “The 7 Best Treatments for Chronic Pain” as a starting point for therapy of CMT (click here to link to that article).

In addition to the therapies recommended in that article, the following are usually listed as therapies for CMT:
Physical Therapy
Shoe Orthotics (shoe inserts)
Leg Bracing
Selective Orthopedic Surgery (for limb deformity)
Effective treatment of pain is essential with CMT.

Simply instructing a patient that they must “live with it” is an insufficient response of a Doctor to a patient in chronic pain. Chronic pain causes negative physiologic changes to the immune system, nervous system, cardiovascular system, endocrine system, cerebrovascular system, and nearly every other system of the human body.

All cause mortality is also increased in people with under-treated chronic pain. This means that existing disorders are often made worse in the presence of chronic pain.
The effect of chronic pain on existing disorders is often under-reported since the cause of death is never “Undertreated Pain” but usually reflects the underlying disease process.

Are you wondering what happened to “Tracey” (the case history I presented at the beginning of this long article)? Her outcome was one of the many successes in my Pain Management practice.

On the first long visit with Tracey I was able to establish that her pain was averaging an 8 or 9 out of 10 when not treated. My custom for my pain practice was to query a new patient as to what medicine in their past history worked best for their pain.

Thereafter, I would estimate the dose based on their usage history.

In Tracey’s case I took a pragmatic approach:

FIRST…I prescribed a short acting opiate pain medication to be taken every 4 hours while awake. This would mean that her starting dose would require 240 pills for the month (1 every 4 hours and 2 at bedtime so she could sleep 4 or more hours).
The “start low and go slow” mantra, that seems to have infiltrated the medical literature, didn’t make sense to me in a patient who was already opiate tolerant.

Nowhere else in medicine do we “start low and go slow” with a patient who already has historically demonstrated an effective dose. Can you imagine a patient with severe high blood pressure, who has been maintained on effective doses of medication, seeing a new Doctor and restarting their medications at the lowest dose possible?

They could have a complication doing this (such as a stroke).

Why is this done with opiate pain medications? It is done this way because the fear of inducing addiction (and potential legal reprisal) is more important to most present day physicians than effectively treating a patient’s pain.

The actual risk of addiction in a chronic pain patient (with whom there is no history of addiction) is less than 1%. The opiate “naysayers” seem to ignore this statistic in favor of political correctness.

Once I had established what dose of opiates would need to keep her pain at a “5” with the short acting opiate, I then converted Tracey to a combination of long acting opiate pain medicine as “background” coverage for her pain and short acting opiate pain medicine for “break-through” pain (the episodes where her pain intensified during the day).

This will often take several sequential visits. Most of my patients had their pain effectively treated within 3 months or less.

The format of using a combination of long acting opiate pain medication with short acting for “break-through” pain mirrors the way in which diabetics are treated with insulin. In a diabetic, a long acting insulin is given as “back-ground” coverage of their blood sugar.

Then, before each meal. a fingerstick blood sugar is checked and a “sliding scale” dose of short acting insulin is given to “cover” any spike in blood sugar. The dose of the insulin is never arbitrarily limited but is determined by how high the blood sugar is.

So it should be with the dosing of opiate pain medications.

SECOND…I considered starting Tracey on a slower to act medication that reduces pain conduction (such as Lyrica). It may take weeks to work so having the opiate pain medication gave immediate relief and hope.

The adjustment of the Lyrica dosing will take months due to each new dose requiring weeks of observation to see if it was reducing her pain.

THIRD…I also considered giving Tracey an anti-depressant that recycles both norepinephrine and serotonin (such as Cymbalta). This type of medicine has shown great promise in reducing pain and alleviating depression (of which most chronic pain patients suffer).

All of these medicines are prescribed with the consideration of potential side effects, drug interactions, previous tolerances, and whether the patient’s insurance will cover the cost of the medicines (a HUGE consideration when considering what medicines to choose).

Within 8 weeks I was able to lower Tracy’s chronic pain level to a “5” where she remained until I retired in January of 2013. She had been a patient of mine for over 7 years at the time I retired and her pain was well controlled throughout the entire period of time.

Don’t believe the misinformation that “long term” opiate therapy doesn’t work. Just ask “Tracey”…

If you are suffering with CMT (or any chronic pain syndrome for that matter) there is hope for you. You will need to find a physician who is willing to prescribe the medications you need.

Those Doctors are out there…don’t give up looking for them.

I hope you have enjoyed this rather long article on CMT. It has been my privilege to share this information with you.

If you have further questions or comments, please send me an email. I will promptly respond.

Wishing you joy and healing,