Friday, 21 July 2017

Eric Clapton's Condition Causing More Guitar-Playing Problems

Today's short, Summer post from ( is a follow up to the post we published when it was first announced that Eric Clapton had neuropathic problems. This then, is a bit of an update. There's not much new news here (regarding neuropathy itself) but it's good to have role-models to both identify with and to compare to our own situations. There are so few 'out' neuropathy sufferers in the media world, yet they must exist. It makes you wonder if neuropathy carries its own stigma for the world of entertainment but at least here, Eric Clapton is open and honest about his condition and the probable reasons for him getting it. As a member of his generation, I do sympathise with what he's going through and hope his guitar playing doesn't suffer too much along the way - we still need the guitar heroes!

Eric Clapton 'struggles to play guitar'
12 June 2016

Rock star Eric Clapton has said damage to his nervous system is making it difficult to play the guitar.

The acclaimed musician told Classic Rock magazine he "can still play" but added it was "hard work".

"I've had quite a lot of pain over the last year. It started with lower back pain, and turned into what they call peripheral neuropathy.

"[It's] hard work to play the guitar and I've had to come to terms with the fact that it will not improve."

But he added that given his life had been fraught with addiction "I consider it a great thing to be alive at all".

"By rights I should have kicked the bucket a long time ago," said the 71-year-old star, who recently released his 23rd studio album, I Still Do.

Clapton achieved global fame in the 1970s with acclaimed songs including Crossroads and Layla, but his widely-acknowledged talent was tainted by addiction, first to heroin and later to alcohol and prescription drugs.

"I don't know how I survived - the Seventies especially," said Clapton. "For some reason I was plucked from the jaws of hell and given another chance."

In 2013, Clapton was forced to cancel several tour dates because of back pain. In the interviews, he likened the pain to "electric shocks going down your leg".

Peripheral neuropathy develops when nerves in the body's extremities - such as the hands, feet and arms - are damaged. There are a number of possible causes, including excessive alcohol consumption.

"I mean, it's hard work sometimes, the physical side of it - just getting old, man, is hard," said the guitarist.

Thursday, 20 July 2017

You Can't Ban Opioids Without First Providing Alternatives

Today's post from (see link below) bemoans the fact that despite the 'crack down' on opioids that currently dominates the news, there are virtually no systems in place to deal with how you treat patients if you don't issue opioids. We're talking about chronic pain patients here - people who have daily pain for months and often years, without let up and without cure. Neuropathy patients are certainly experts in that field! Regular readers will know that this subject appears time and again here on the blog but the point is that people with nerve damage often find themselves in the situation of having no alternatives to controlling their pain than the strongest analgesics. Nobody wants to take them but the options are limited. Everybody is open to a more holistic approach, so long as the treatments provided work. Individually, treatments may be limited but bundled together, the need for opioid strength medications can be reduced. However, from scientists, pharmaceutical companies, through doctors and local health authorities to the patients themselves, the systems are just not in place and that's what this article rightly deplores. You can't deprive patients of opioids in a single action, without providing viable alternatives...but they do!

When opioids aren’t the only answer
By Allison Pohle | September 29, 2016

Earlier this year, in the wake of harrowing statistics about opioid overdoses and deaths, the Centers for Disease Control and Prevention issued new prescribing guidelines for physicians. Opioids, the agency suggested, should not be prescribed as “first-line" therapy for chronic pain, and should be used alongside a range of alternate treatments, from anti-inflammatory medications to meditation and psychological counseling.

But getting the millions of people with chronic pain to switch to alternative treatments is a daunting task for many physicians — one that involves navigating inconsistent insurance coverage, facing resistance from patients, and changing the longtime habits of doctors themselves.

“Our training for the past 15 to 20 years has been left over from this 'pain is the fifth vital sign; you must treat all pain' mode of thinking, and people have been taught to give copious narcotics because we must treat all pain," says Melissa Rathmell, M.D., director of integrative medicine at the University of Massachusetts Medical School. “[Physicians are] now being told, 'Don't use narcotics,' but [they] aren't being given other tools."

Narcotics work by masking pain, but they don't treat the cause of it, which is why chronic pain patients often require many modalities of treatments — sometimes including opioids, Rathmell says. In many cases, the type of chronic pain patients experience will never be completely eliminated, but, rather, managed.

But while chronic pain benefits from interdisciplinary care, pain specialists note that the healthcare infrastructure is largely not set up to provide services in this way. And doctors often don't have the time or information to determine all causes of pain, or to find and treat related ailments.

For instance, chronic pain patients are more at risk for depression, says Anita Gupta, vice chair of the Division of Pain Medicine and Anesthesiology at Drexel University College of Medicine. But many physicians and pain physicians are not screening for depression or treating it.

“Some patients have anxiety disorders that have been undiagnosed, which can contribute to their fear of lowering their dosages or trying alternate therapies," Gupta says. “It's easier to keep writing a prescription than get someone into therapy."

Even when patients do receive mental health treatment or incorporate alternative therapies, many of them struggle to receive coverage from their insurance companies. Physical therapy, for example, is generally capped at a reimbursement limit of $1,960 under Medicare Part B unless the patient is eligible for an exception.

“Insurance plans will easily cover opioids and will not cover alternatives like acupuncture or exercise programs," says Peggy Compton, Associate Dean for Research, Evaluation and Graduate Programs at Georgetown University. “Opioids are very cheap, which is why it's much easier for an insurance company to tolerate them."

One reason for the lack of coverage is a lack of data: There isn't a large amount of convincing research to support their effects. Most research on pain treatment is sponsored by drug companies — and that's the information that gets published and put in front of physicians and insurers, Rathmell says.

“Non-drug methodologies are much more difficult to get funding for research because [many] are individualized and are very patient or provider intensive, so the classic double blind study is really not possible," she says. “It diminishes the perceived effect. Without drug company support, it's difficult to find the money."

And while a physician can appeal an insurance company's rejection, that process can take many months to complete, Gupta says.

“The appeal could involve another form or a peer-to-peer review, which is another doctor determining whether the treatment is necessary. It can be very tedious, and physicians just don't have time for it," she says.

The administrative challenges can leave physicians feeling as though they're barely keeping their heads above water, says Stephen Martin, a family physician and associate professor at the University of Massachusetts Medical School.

And though the CDC's recommendations are voluntary, Martin worries that doctors will take them as the gospel for prescription practices — though chronic pain patients need individual programs for tailored treatment.

“I'm all for providing a scaffolding and reinforcing interventions," for chronic pain, he says, “but that can include finding a job and getting stable housing and a great physical therapist, as well as taking opioids and using a lidocaine patch."

Some chronic pain patients have no history of drug abuse or addiction and function well on higher doses of opioids, he says. “This recommendation could lead to some arbitrary decision-making."

Still, Martin and other physicians say that, in terms of prescribing for acute pain, lowering both dosages and the number of pills provided will be a helpful step forward in combating the epidemic.

“It's hard to do this well, and it's hard to do this well over time," Martin says. “But some of the most remarkable things happen if pain is managed well. People have improved function and can take care of their grandchildren. They can keep their jobs and take care of their families, or they can pick up volunteer work. All the things that matter in this world can get better by being thoughtful about chronic pain."

Allison Pohle is a writer based in Boston. Illustration by David Barber.

Wednesday, 19 July 2017

Now I Get It About Chronic Pain!

Today's post from (see link below) makes a refreshing change from all those self-help, or asking for understanding articles that clog up the medical forums. they all have their place in the chronic illness circuit and are all valid in their own way but after a while, it becomes almost cliched and the readers switch off. This one is different a) because it present the reality of living with chronic pain in a factual and non-sentimental way and b) because it's not telling you to do anything apart from listen and in the end it achieves so much more because of that. Suitable for both patient and friend/family/carer/doctor and may just be a light bulb read for some!

The Side Effects of Chronic Pain Nobody talks about 
Written by katwilson04 

It’s normal to talk about the side effects that everyone can see, but what about the side effects that aren’t seen. The ones nobody dare ask because they are afraid of the answer (and then wish they hadn’t asked the question).

Chronic Pain is an invisible illness and this means hidden side effects.

Firstly, and sometimes obviously, is weight gain and loss. I’ve not met or spoken to one person with a chronic illness who’s happy with their weight. Let’s face it none of us really are happy with our weight, but having all these medications just to be able to survive one day takes a toll on your weight. Be it steroids, nerve pain drugs or even opioids, prolonged use has a big effect. But because of our illness’ exercise barely exists, because let’s face it, if you can get or out of bed one morning you’ve basically just climbed Everest. Enough said. But it’s a constant battle with medication and exercise, and certainly not a battle ANY of us are choosing to fight.

Mood. Mood swings are a given, for any human being, it’s what we do as human beings, but add in severe and debilitating pain and medication, it’s like a ticking time bomb. Everyone has off days, but when your are in so much pain, THE slightest thing can make you explode, and for no apparent reason. Certain medications I have taken in the past have made me a raving lunatic at times, but not having control of your mood is scary. You can almost see it happen, this switch inside you clicks and BOOM, look out! But in the next breath, you can be so delightfully happy, almost delirious, you forget about the bad moods, till that switch goes click.

Patience. Given that most of your time is spent waiting on doctors, surgeons, and everyone else, you’d think patience was a given. No. I have less patience now than I ever did, but not in everything I do. I have less patience for faffing around, being down right rude, General BS and Stress. Stress being the main factor of pain in my body, I try to avoid it at all costs – which in itself can be stressful (go figure!) Of course it doesn’t always work, and I will get myself worked up which then causes a massive crash, but I’m learning to deal with things a lot better. But if we all had a little more patience with someone we know suffering from an illness, the benefit to that person is better than any gift.

Mental Health
. Of course, this is a big side effect and one that’s very easily hidden. Be mindful of the fact that that person has gone from being a healthy person, to having their life changed in an instant. It’s not an easy process, it never will be, you grieve every day for the person you once were, but how do you deal with the fact that that person has gone, and probably forever? Is it any wonder depression is a major side effect? Anxiety also comes in to play here, because not knowing how to deal with this “new” life is extremely new territory, and terrifying. Is it any wonder people can be anxious?

What was once perhaps a care free life where you did as you pleased, has now resulted in a carefully managed routine, and is such a shock to the system. Imagine having a successful career, and a happy/comfortable life (as comfortable as it can be!) and then all of a sudden you become chronically ill, not able to work, or provide for your family, let alone yourself. Not able to function without help, or do the things you used to. All that taken away in the blink of an eye. The lifestyle you once had has been swapped for something that you struggle to control, let alone get used to.

Skin/Hair etc
. Now of course you can see skin (not all skin of course) and hair, nails etc, but through medication, tiredness, and other factors, our skin and hair can take a beating too. My skin has changed from relatively normal to extremely uber sensitive. If something even brushes past my skin, I have a reaction. My face is now full of spots, which come for a couple weeks holidays, then disappear, then re-visit like never before. Reactions to medications can cause terrible skin problems. Hair can also fall out at a quicker rate than it grows.

Intimacy. Not everything is about sex if you are in a relationship, there are of course plenty other ways to be affectionate and loving with your partner. But what if having sex is painful and hurts you, should that put you off ever having sex again? Should people who have chronic pain/illness’ never have sex again? Eh I don’t think so, just because we are in pain doesn’t mean we don’t have the same needs like any other person. It’s all about adapting and finding what works, and what doesn’t aggravate pain levels. Just have fun experimenting!

Finance. I’m broke, like all the time. The never ending medications, the lotions and potions, treatments, travel to and from appointments, everything adds up. And if you can’t work it’s even harder. Ok we aren’t all lucky enough to have won the lottery or be well off, but if you can help someone in need, do it! It doesn’t have to be handing over money, why not buy some of the needed lotions and potions or medication? It’s a gift that will take pressure off. It’s VERY hard for me to admit I need help financially, I do not like asking anyone for money or help, but that’s something I need to work on – my own pride. Because worrying about money only adds to stress, and stress makes things worse.

There are so many side effects, side effects that seem to be taboo. But why? None of the above points need to be hidden or not spoken about! All it takes is for a friendly and supportive ear to be there for a person, and have some degree of understanding what that person has to deal with.

Look beyond what you CAN see, and search for what you can’t.

Tuesday, 18 July 2017

Gluten And Neuropathy: No Proof Of A Cause Effect Relationship

Today's short post from (see link below) asks the question as to whether a high gluten diet can cause neuropathy. It was long-thought that there is a link between the two but proving it was always a problem, if only because of the nature of neuropathy as a disease and its multiple causes. Recent articles have tended to reject the theory linking gluten to nerve damage but over the course of time, both opinions seem to come to the fore. The fact is that we just don't know for sure. Certainly many people seem to gain benefit and a reduction in their neuropathic symptoms if they reduce or cut out gluten from their diet but even then, it can't be proved. This article rightly points then out that a cause-effect relationship cannot as yet be proved.

Does gluten cause peripheral neuropathy?
By |July 15th, 2017

 Peripheral neuropathy is a peripheral nerves disorder; these nerves take care of information going from/to the central nervous system. A nerve or a group can be affected. In fact, many groups of nerves can be affected. Damage can be unilateral or bilateral and symmetric. As the nerves perform many different functions, some or many can be affected. Basically, and to understand better the issue, it can be simplified considering the sensorial, sensitive and motor damage. In other words, it can range from pain to loss of sensibility, numbness or a burning sensation, loss of strength or movement. This allows us to understand the complexity of the issue. For a more detailed read, we highly recommend to visit:

Causes of peripheral neuropathy are varied as well. From diabetes, autoimmune diseases or infections; there are plenty of options to consider with each single patient. However, one of the most common causes nowadays is gluten intolerance or celiac disease. Gluten is a protein found in many cereals, especially in wheat, oat, barley and rye. People who cannot tolerate gluten (celiac disease), not only suffer digestive symptoms, but several organs and systems can be affected.

In people with celiac disease there is, according to several publications, up to 49% of peripheral neuropathies of varying degrees. In fact, in a significant number of cases (which are increasing apparently), celiac disease is found from a peripheral neuropathy, which would be the initial manifestation.

While the percentage of celiac disease patients with some peripheral neuropathy manifestation is extremely high, there is no need to rush for conclusions, according to several studies. It could be a causal relationship (celiac disease causes peripheral neuropathy) or some lesional association (both events happen at once, with none of them causing the other). No conclusive studies in this direction yet, but it is a proven fact both events happen at once frequently. A very strong argument in regard to celiac disease as a cause and not as an associated disease is that there is no significant improvement in a high percentage of patients when a gluten free diet is introduced.

In conclusion is indisputable the relationship between both issues, but still cannot conclude a cause-effect relationship.

Monday, 17 July 2017

Chronic Pain Patients Not Guilty In Opioid Crisis

Today's post from (see link below) is important because it has to be said and the more frequently the better, in order to protect both the reputations and health of genuine patients living with chronic pain on a daily basis. Naturally, neuropathy patients fall into this category but there's nothing the media loves better than to pin labels on people and point the finger when it comes to social issues and when even your own doctor looks worried when writing out your latest strong medication prescription, you know you're being successfully stigmatised. That's why articles like this are vital in providing a balanced argument in the face of the current hysteria concerning opioids and the like. Worth a read and worth passing on, even if your own medication hasn't reached opioid strength yet because it may be your future that's on the line.

Chronic Pain Patients Did Not Cause Opioid Epidemic
By Roger Chriss, Columnist May 30, 2017

Contrary to common belief, chronic pain patients are not all opioid addicts and did not cause the opioid crisis. The vast majority of patients who are prescribed opioids rarely misuse or abuse them.

Opioid addiction is real and should not be ignored or downplayed, but we need to identify its true causes. Despite the growing number of restrictions on prescription opioids, overdoses and related deaths continue to rise, which strongly indicates that pain patients have very little to do with the so-called epidemic.

Some recent articles bear this out:

Science Daily reports that while the national death toll from opioid overdoses is soaring, only “a small minority of pain patients are represented in the mortality data.”

The journal Pain Medicine published research showing that most pain patients on low doses of short-acting opioids “have a low risk for developing a substance use disorder.”

Similarly, chronic pain patients generally do not experience dose escalation, but often remain stable at the same dose for months or even years. And according to the National Institute of Drug Abuse, doctor shopping by pain patients is rare.

For most chronic pain patients, opioid medications are part of a larger daily routine of pain management, and opioids are not craved any more than an athlete craves a vitamin supplement. Thus, the risks of opioid addiction among chronic pain patients is quite low overall, and there are well-established protocols such as the Opioid Risk Tool to screen patients and monitor those whose risk may be higher.

But all this evidence does not seem to convince regulators, politicians, the news media, and anti-opioid activists like Physicians for Responsible Opioid Prescribing (PROP). Fortunately, it can be clearly shown they are wrong and that chronic pain patients are unfortunate bystanders in the opioid epidemic.

First, there simply are not enough chronic pain patients on opioid therapy to account for the number of opioid and heroin addicts. The American Society of Addiction Medicine estimates that in 2016 there were over 2.5 million people addicted to prescription pain relievers or heroin.

There are at most 11.5 million chronic pain patients on opioid therapy. Even if 5 percent of them develop a substance abuse disorder, that would give us 575,000 opioid addicts. Where did the other 2 million addicts come from?

Second, people who suffer from chronic pain disorders are no longer prescribed opioids lightly or quickly. Instead, they start with NSAIDs like ibuprofen or naproxen, then onto anti-seizure medications like gabapentin or anti-depressants like amitriptyline or duloxetine, all the while also trying physical therapy, injections or other modalities. They are carefully screened, monitored and assessed along the way, with opioids considered only if everything else fails. This makes addiction a rare outcome.

Third, media coverage of the opioid epidemic and case literature on opioid use disorder routinely describe people becoming addicted to opioids after recreational use, trauma or surgery. It may be that “opioid addiction often starts with a prescription,” but it is usually a prescription for acute pain. And for many, the addiction starts with someone else’s prescription, perhaps taken from a family member or obtained from a friend.

Therefore, the treatment of chronic pain conditions can at most have only minimally contributed to the opioid epidemic. Chronic pain patients are not opioid addicts any more than a diabetic is an insulin addict, and in fact insulin is abused.

Unfortunately, chronic pain patients are often treated like addicts and the doctors who prescribe to them are even called “drug dealers.” This is harming chronic pain patients, doctors and people suffering from opioid addiction.

Opioid therapy helps people with chronic pain disorders remain employed, care for themselves and their families, and contribute to and participate in their communities. They are achieving what modern medicine and society wants: people who can work, pay taxes, avoid becoming a burden, and enjoy some quality of life.

Restricting opioids is not slowing the opioid epidemic. The increased availability of naloxone and improved care by first responders and emergency departments is helping to reduce fatalities, but opioid addiction still needs treatment and at present there is not enough of it.

To be clear, chronic pain patients and opioid addicts are two distinct groups, both of which deserve care and support. Treating pain patients as addicts can lead to denial of care, which may actually increase the number of opioid addicts. And conflating chronic pain with opioid addiction may be delaying care for people struggling to find addiction treatment.

Roger Chriss
lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Sunday, 16 July 2017

Are Sexual Performance And Neuropathy Related?

Today's well-intentioned post from (see link below) comes over as slightly vague and not sure where its focus lies but the core subject is nevertheless, a frequent, unwanted side effect of nerve damage, be it fibromyalgia (as in this article) or other forms of neuropathy. Unfortunately, we men are sensitive creatures when it comes to sexual performance (quivering jellies at the very thought of impotence!) and if you have neuropathic problems then the likelihood of ED problems increases. The problem lies in knowing why that happens because depression stemming from performance anxiety can kill an erection before anything has happened, even in the healthiest of men. Equally, damaged nerves can be the culprit and then the problem becomes harder to solve. Thankfully, all sorts of variations on the little blue pill (daddy's little helper!) can help but for many men, erectile dysfunction due to neuropathy, becomes something they have to learn to live with and adapt to and nobody knows the implications of that prognosis better than the neuropathy patient. This article is useful without being conclusive but describes the problem sympathetically. By the way, before you ladies become too smug about the fact that men are whingeing about the sort of things that women have had to put up with for years, unfortunately, neuropathy is alsolikely to have effects on women's sexual health too. Yet another negative side effect of neuropathy eh! The dice does seem overloaded at times!

Are Erectile Dysfunction and Fibromyalgia Related? 
Wyatt Redd / July 11, 2017 

Fibromyalgia seems to affect women much more often than men. In fact, about 90% of people with fibromyalgia are women. And understandably, a lot of the information out there on the condition is directed at women. That can leave men with fibromyalgia feeling a bit forgotten. Not to mention, it leaves them struggling to find good information that applies to the unique issues that affect them.

And one of the things that men with fibromyalgia struggle with is erectile dysfunction (ED). ED affects all kinds of men, and it can leave them with the sense that they’re living a half life. After all, it makes it hard to maintain the intimate relationships that men cherish, even if we don’t always vocalize how important they are to us. And when you have fibromyalgia, it can make things even worse. So what are some of the basic causes of erectile dysfunction? Can it be a side effect of fibromyalgia? And what can you do to manage it? 

What Causes Erectile Dysfunction?

Essentially, erectile dysfunction is an inability to maintain proper blood flow necessary to sustain an erection. Men with ED might have trouble getting an erection in the first place or maintaining an erection once they have one.

There are two base causes of the condition: medical and psychological.

Medical causes of erectile dysfunction are things that physically restrict the flow of blood to the penis. Typically, this is due to the narrowing of the blood vessels that lead to the penis, a condition called arteriosclerosis. Arteriosclerosis can be caused by a range of things from diabetes to smoking.

And conditions that affect the nerves like peripheral neuropathy can lead to a breakdown of the nerve stimuli sets that trigger the flow of blood to the penis.

But ED can also result from psychological problems like depression or excessive stress. And strain in a relationship can even make it hard to maintain an erection. 

How are ED and Fibromyalgia Related?

It’s hard to say that ED is a side effect of fibromyalgia, due to the fact that men with fibromyalgia don’t seem to suffer from it at a significantly higher rate than the general population. We do know, however, that fibromyalgia seems to be correlated with peripheral neuropathy in a significant number of people. And the nerve damage that causes peripheral neuropathy could conceivably play a role in erectile dysfunction.

And the medications most commonly prescribed for fibromyalgia include antidepressants, which are known to trigger the condition in many people who take them.

With that being said, there are a number of psychological reasons that fibromyalgia could lead to an inability to maintain an erection which are probably just as significant.

While the physical causes are less of an issue with fibromyalgia and ED, the psychological stresses that can lead to the condition are very much a factor for someone with fibromyalgia.

Fibromyalgia, due to the chronic pain and fatigue, often leads to depression. And depression is a significant source of erectile dysfunction. In addition, men with fibromyalgia are often unable to work and the chronic fatigue leads people to become withdrawn. As a result, the relationships that men depend on can become strained, which leads to the sorts of interpersonal issues that cause ED. 

How can you Manage it?

The best way to handle relationship issues caused by fibromyalgia is with professional counseling. And counseling can also help with the psychological issues behind the disorder. But the most important thing to remember about erectile dysfunction is that it is nothing to be ashamed of.

A lot of guys who suffer from ED can be embarrassed about it, which often keeps them from seeking the help they need. But talking to your doctor about the condition is always the first step in getting effective treatment.

After all, your doctor can prescribe medication that can treat the condition. There are a number of different drugs like Cialis and Viagra that work by stimulating the flow of blood into the penis. These drugs are typically quite effective, but they do carry a small risk of side effects like heart attacks or strokes.

It’s important to discuss the medications with your doctor so that they can adequately assess your risks. And ED can sometimes be a sign of more serious conditions like prostate cancer. So your doctor may want to perform an examination to make sure that you aren’t suffering from any other medical issues.

So tell us, does your ED seem to be related to fibromyalgia? How do you deal with it? Let us know in the comments.

Saturday, 15 July 2017

Statins May Not Be A Villainous Cause Of Nerve Damage After All

Today's post from (see link below) is an important one if the research turns out to be true. This blog has consistently warned about the risks of nerve damage when taking statins for cholesterol problems and it was pretty much a given among neurologists too. However, a relatively small-scale Danish study has shown that the risks are exaggerated and unfounded. They found no evidence that taking statins led to neuropathic problems. There are two caveats to this however: one, the study group was small (370 patients) and two, patients with risk factors for nerve damage (for instance, diabetes patients) were not included. So in conclusion, it's safe to say that there is now some doubt that statins can cause neuropathy but there need to be much wider-scale studies carried out to prove this one way or the other. If you're taking statins, it remains sensible to discuss it thoroughly with your doctor.

Study finds no link between statin use and risk of polyneuropathies
June 27, 2017 

 Download PDF Copy

It was long debated whether cholesterol-lowering statins can be conducive to the occurrence of neuropathies. A study presented at the Congress of the European Academy of Neurology in Amsterdam now issues an all-clear signal: Patients treated with statins were not at greater risk of developing polyneuropathy than others.

Here is a piece of good news for patients who rely on cholesterol-lowering medications. In a break from earlier assumptions, Danish researchers at the 3rd Congress of the European Academy of Neurology (EAN) in Amsterdam reported that the use of statins did not lead to a higher risk of developing polyneuropathy.

Polyneuropathy entails systemic damage to peripheral nerves with symptoms that often include pain, unpleasant physical sensations such as pins and needles, numbness, or distressing perceptions of coldness and heat in the limbs. Polyneuropathy may also result in weakness, e.g., in the hands and feet.

Until now, experts have debated whether statins could be a possible trigger for this nerve disorder. Several studies were unable to prove a connection while individual case reports and a study conducted in Denmark in 2002 cast doubt on this conclusion. The incidence of polyneuropathy of no known cause (i.e., idiopathic polyneuropathy) in this study was quite low, but the relative risk not insignificant nonetheless: Patients who suffered from polyneuropathies were 14 times more likely to have taken statins, compared with controls from the general population.

Now the Danish team of researchers led by Prof David Gaist drilled deeper on this question. The study was repeated with a design highly similar to that of the previous 2002 study, but this time a considerably larger data set was included spanning the years 1999 through 2013. After excluding patients with diabetes, high alcohol use and other recognized risk factors of polyneuropathy, a total of 370 patients with a definite diagnosis of polyneuropathy were identified. Use of statins among these patients with polyneuropathy of no known cause was compared with that of a control group of 7,400 individuals. In the end, the researchers were able to give the all clear signal.

Lead author, Dr. Toke de Koning Svendsen from Odense University Hospital summarized the findings as follows. "In our study, there was no connection between the use of statins and the occurrence of polyneuropathies." The lack of an association to polyneuropathy was confirmed in analyses that took statin dose and duration of statin use into consideration. "One caveat we must add, however, is that we did not include patients with diabetes or other established risk factors of polyneuropathy in our study. So, even though the news is good, we wish to acknowledge this potential study limitation", added Dr Svendsen. 


Friday, 14 July 2017

The Problems Of Taking Medications At The Right Time Every Day

Today's post from (see link below) talks about the importance of taking medications in the numbers prescribed and at the appropriate times of day. Many people living with neuropathy, also live with other conditions that require medication (often the causes of the neuropathy in the first place) and the older we get, the more pills we tend to need to take. If you include supplements and vitamins etc, then your daily intake can quickly become chaotic unless you keep an eye on it. Missing medications has consequences so it's important to develop a system that allows you to take your meds regularly without it dominating your day. This article suggests several ways of doing this and is very helpful. Even if you don't work, taking your meds at the right time can become problematic and if you do work...well, you can guess the rest. Well worth a read if you're needing to take medications for more than one condition.

Forgot to take your meds again? Stay on schedule with these tried-and-true tips
By Stacy Lu May 2017 This story was updated on May 4, 2017.

In a 2016 study, almost 1 in 3 people missed at least one dose of their diabetes drugs within a month. Use these strategies and reminders to stay on track.

1. Add meds to your routine.

Brewing your morning coffee? Reading the newspaper? Take your pills or morning insulin injection, too. “A new behavior is much easier to [make] a habit if you pair it with an existing habit,” says Alison Phillips, PhD, a health psychologist with Iowa State University. Her research shows that having a strong habit is the best predictor of how well someone will stick to a medicine schedule. Adding medications to a daily routine that’s already second nature will help you take your meds.

Morning may be the best time to remember medications taken only once a day (but check your prescription; some once-daily meds are taken at bedtime). People tend to have firmer routines then, Phillips says. Mealtimes, including for pets, and teeth cleanings are other rituals that can include taking meds. It typically takes a few weeks to establish a habit, Phillips cautions, so have backup reminders (more on that coming up) in place until then.

2. Consider smart packaging.

One downside of having a strong habit may be taking medicines so automatically that you sometimes can’t remember whether you’ve taken them or not. An answer to that is a simple, low-tech aid that many certified diabetes educators swear by: the pill box. Set a regular day and time for placing a week’s worth of pills into the box. For larger amounts, try a stack of colorful containers, such as Oveo’s ($16.99, Amazon).

Smart packaging can also help you keep multiple prescriptions straight. One example is PillPack, an online pharmacy that pre-sorts your medicines into single packets labeled with the date, day, and time you need to take them—at no extra cost. Research suggests that ordering 90-day supplies from mail-order pharmacies helps promote taking medication as directed overall, as people don’t need to worry about going out for a refill as often.

A special meds container can be a meaningful reminder, too. Kim Petrecz of Pottstown, Pennsylvania, uses a designer cosmetic bag to hold a full day’s supply of her medications. “It’s the cutest bag,” she says. “It’s part of my routine when we travel and is a great reminder.”

3. Know what you’re taking.

“Having negative attitudes about your medicine can predict forgetting,” says Jeffrey Gonzalez, PhD, a psychologist at the Albert Einstein College of Medicine in New York City. He studies factors that affect how well people comply with their medication schedule. For instance, people are less likely to take their meds as prescribed if the health benefits aren’t clear and if they have no symptoms of their illness. His advice: Ask your provider to explain how each drug works, as well as its potential side effects. Checking your blood glucose as directed may help you to see for yourself that a diabetes drug is working, especially when you start a new medication.

4. Have a system of reminders.

If you’re never without an electronic watch or smartphone, set an alarm or calendar event to alert you when it’s time to take your meds throughout the day. Apps may help, too. One to try is Medisafe; the free app, which works on both Apple and Android devices, allows you to input lists of your medications, set reminders, and alert friends or family members if you’ve forgotten to take your meds. The Mango Health app, also for Apple and Android, gives an audio reminder when it’s time to take your meds and includes a “habits” feature for tracking step count, weight, and blood glucose.

For a fee, you can also hire a service like SageMinder to make one or more phone calls to you per day to remind you to take your medication (; fees start at $18.95 per month). If you like gadgets, try MedCenter’s five-alarm watch ($27.95) or talking alarm clock ($39.95). Or go low tech: Stick notes where you’re likely to see them as you go about your daily routine.

5. Ask for help.

If you often forget to take your medications, ask your provider if it’s possible to simplify your dosing regimen, or ask for help in making a plan that fits your lifestyle. “Sometimes the solution is something as simple as a timer. Other times, it requires looking at regular meal habits and making adjustments to a patient’s schedule, if necessary,” says Renee Cowen, RD, CDE, a diabetes educator with Kaiser Permanente South Bay Medical Center in Harbor City, California.

You can also enlist another person to help remind you when it’s time to dose, but make sure he or she is a positive, supportive teammate. Otherwise, nagging can be counterproductive and annoying, says Mark Heyman, PhD, CDE, a psychologist who runs the Center for Diabetes and Mental Health in Solana Beach, California.

A trusted helper can go a long way. Debbie Blackman Rose of Chagrin Falls, Ohio, sorts pills for her husband’s 10 prescriptions into a labeled to-go bottle for his midday dose and in a pill caddy by his bedside for night. “It helps both of us. I know that he’s taking his meds, and he appreciates that I help him remember,” she says.

A previous version of this article misspelled the last name of a Kaiser Permanente diabetes educator. Her name is Renee Cowen, not Cowan.

Thursday, 13 July 2017

What The Heck Is Fibromyalgia And Is It Connected To Neuropathy?

Today's post from (see link below) is a definitive explanation of fibromyalgia; the disease which defies explanation and is often confused with other conditions, especially nerve damage. If you have already been diagnosed with autonomic, or severe peripheral neuropathy, it is worth talking over the possibilities that you may also be suffering from fibromyalgia with your doctor because many of the symptoms seem to overlap. This is especially true if, in addition to the classic neuropathy symptoms, you also have muscle and joint problems, plus severe fatigue. However, before doing that, it may be worthwhile reading this article and trying to put your symptoms into some kind of context. Fibromyalgia remains a mysterious condition that is often diagnosed after all else is ruled out and as such, it can take years before it's properly diagnosed. Having the basic facts at hand may help you decide whether you need to urge your doctor to look a little more closely at your case, it's important to remember that the chances of you having fibromyalgia are pretty small but that shouldn't dissuade you from taking a rational look at your own situation and either ruling it out, or proceeding further.

Fibromyalgia: Cracking the Case
By Stephani Sutherland 2017

Researchers are just beginning to understand the biological underpinnings of a long-misunderstood condition. Image credit: stepanpopov/123RF Stock Photo.

Fibromyalgia. Many patients with this perplexing diagnosis have seen doctor after doctor in search of an explanation for the widespread pain, fatigue, and disordered sleep that has disrupted their lives—sometimes severely. Depression, anxiety, and “brain fog” also commonly affect people with fibromyalgia. Despite decades of research, seemingly everything about fibromyalgia remains mysterious. But, encouragingly, researchers are finally making progress toward understanding this long-unexplained syndrome. Those who study fibromyalgia hope this will legitimize a condition that physicians have long doubted, and bring much-needed relief to patients.

A difficult diagnosis

Not everyone with all-over pain receives the diagnosis of fibromyalgia. The label usually comes from a rheumatologist—a doctor who specializes in musculoskeletal and autoimmune disorders—only after other ailments are ruled out. But other chronic pain diagnoses, including temporomandibular joint disorder (TMJD), chronic pelvic pain conditions such as interstitial cystitis (IC), and irritable bowel syndrome (IBS) often mimic the symptoms of fibromyalgia, also often with no discernible physical cause. The diagnosis that a patient receives might depend on the specialist they see, experts say.

Roland Staud, University of Florida, Gainesville, US, likens the current understanding of fibromyalgia to the traditional Indian story of seven blind mice trying to determine the identity of an elephant. One blind mouse feels a leg and calls it a pillar; another grabs ahold of the tail and reports finding a rope. Not until all the parts are considered as a whole does a complete picture of the beast emerge.

Likewise, rheumatologists with patients complaining of muscle aches may diagnose fibromyalgia, whereas a gastroenterologist proclaims IBS the cause of pain, but apart from complaints of regional pain in IBS, the overall symptoms of these two conditions look remarkably similar. Patients with low back pain, osteoarthritis, and other common chronic pain conditions can also develop this characteristic set of symptoms.

Today, researchers are sketching out a picture of fibromyalgia as a pain disorder that can be triggered by any number of individual maladies, each one heightening future risk for developing this enigmatic condition.

Brain pain?
Researchers and doctors have traditionally classified different types of pain into several categories. Nociceptive pain is the acute protective signal of impending tissue damage that arises from stepping on a tack, for example. Inflammatory pain results from the activity of immune cells, as in osteoarthritis. And neuropathic pain springs from nerve damage that results from diabetes or chemotherapy, for instance. Fibromyalgia has been a conundrum in part because it doesn’t really fit into any of those categories, though some symptoms resemble inflammatory pain, and others neuropathic pain.

Over the years, researchers have tried to craft a new category to contain fibromyalgia, which they have variously called functional, dysfunctional, or somatoform disorders. “The term that we prefer is ‘centralized pain,’ meaning that pain clearly is coming largely from the brain rather than from out in the periphery,” says rheumatologist Daniel Clauw, University of Michigan, Ann Arbor, US.

Because the pain of fibromyalgia seems to originate from the muscles, for years rheumatologists studied patients’ muscle and joint tissues, but found no evidence of inflammation or damage that could cause pain. Without evidence for bodily injury underlying the pain, many researchers turned to studying the brains of people with fibromyalgia. Some, including Clauw, have embraced the idea that fibromyalgia is primarily a disease of the brain.

The unifying symptoms, like widespread pain and fatigue, of fibromyalgia and other such syndromes indicate that changes in the central nervous system are at play, Clauw says. Brain imaging studies have indeed shown evidence of structural and functional changes in the brains of patients with fibromyalgia. And anti-depressant and anti-seizure medications that are effective for some people with fibromyalgia work in the brain, he adds.

But other researchers contend that all chronic pain conditions lead to changes in the brain, and in fact every experience of pain—whatever its initial cause—emerges from the brain. Many researchers in the field therefore are still searching for as-yet-undetected pathological processes in the body that may be driving the symptoms of fibromyalgia—processes that might be reversible.

Evidence of peripheral nerve damage
In 2013, several groups published evidence of neuropathy, or damage and dysfunction, in the small nerve fibers that transmit pain signals from the skin, in patients diagnosed with fibromyalgia. One study led by Claudia Sommer, University of Würzburg, Germany, found dysfunctional nerve activity in twenty-five adults with fibromyalgia, according to sensory testing (in which subjects reported when they detected hot or cold stimuli) and electrical recordings of peripheral nerve activity. In addition, skin biopsies from fibromyalgia patients often revealed withered or sparse nerve endings. These abnormalities were not present in healthy control subjects or in ten subjects without pain but with depression, a condition that shares some aspects of fibromyalgia such as fatigue and inactivity.

Another study, led by Anne Louise Oaklander at Massachusetts General Hospital, Boston, US (see related RELIEF podcast with Oaklander here) also used skin biopsies, with similar findings. Oaklander found that forty-one percent among 27 adult subjects meeting diagnostic criteria for fibromyalgia also met the diagnostic criteria for small-fiber polyneuropathy (SFPN), a common neuropathic pain condition with myriad causes, whereas only three percent of healthy control subjects showed signs of SFPN.

A third study, led by Jordi Serra, MC Mutual, Barcelona, Spain, and Neuroscience Technologies, London, UK, measured dysfunctional nerve activity in the peripheral nerves of fibromyalgia patients and showed that it mimicked nerve activity seen in patients with SFPN but not healthy controls. Serra uses a highly specialized technique called microneurography to record activity from individual nerves in a person’s skin.

Together, these reports suggest that, somehow, damage to or dysfunction of peripheral nerves is a contributing factor in many cases of what has been diagnosed as fibromyalgia. But many questions remain about the link between neuropathy and fibromyalgia.

Oaklander stresses that it’s important to identify any potential underlying medical causes of fibromyalgia, because some can be halted or improved. Most cases of SFPN can be traced to potentially treatable conditions including diabetes, chemotherapy for cancer, an autoimmune reaction, or—rarely—a genetic abnormality; some cases of SFPN remain mysterious in origin. Oaklander says that many of her patients with neuropathies have improved with treatment of these underlying conditions rather than relying on a standard course of treatment with painkillers. Certainly not all cases of fibromyalgia are rooted in undiagnosed SFPN, Oaklander says, “but pulling out the 40 percent who appear to have SFPN may help researchers to find the cause in the remaining 60 percent as well.”

But for patients, a diagnosis—or even treatment—of SFPN may not be sufficient to halt fibromyalgia. Kathleen Sluka, University of Iowa, Iowa City, US, says that while the findings of peripheral neuropathy in fibromyalgia patients are an important piece of the puzzle, “patients need to understand this is not going to lead to a miracle cure. There are multiple mechanisms underlying fibromyalgia, and there may be several going on at once. Treatments need to be aimed at each of those components and tailored to the individual,” she explained.

Is it a real thing?
While fibromyalgia has gained recognition in recent years as a condition with biological underpinnings, many doctors practicing today still doubt that fibromyalgia is real, or they refer to it as a psychological disorder—one that’s “all in the head.” But, like many diseases in the history of humankind, Serra says, fibromyalgia is evolving in our cultural consciousness. For example, 200 years ago, people with epilepsy were regarded as crazy, or possessed by the devil. Only when electroencephalography (EEG) came along—a test that records brain activity using electrodes attached to the scalp—did doctors realize that the disease was rooted in abnormal brain activity.

“Now, no one doubts that epilepsy is a neurological condition that can be treated. But back then, it was impossible to convince doctors it was a real disease. Fibromyalgia is very similar, in that we have patients who complain of pain and other mysterious symptoms and are studied by physicians who find nothing wrong,” so they often dismiss or ignore the patients, Serra says.

That dismissal can make patients feel crazy, even though they know their pain is very real. “One of the most frustrating things for patients is that they are often not believed—and this may be constant, going on for years,” Serra says. While the new findings of peripheral nerve damage in fibromyalgia patients may not offer a cure or even an immediate treatment, they represent the first objective, physical evidence of dysfunction linked to their illness. “The skin biopsies and microneurography are objective tests. To have a doctor say your nerve activity is abnormal, or that you have small-fiber neuropathy” can be a source of tremendous relief and validation for patients, Serra says.

It’s entirely possible that, until now, studies have missed signs of damage or dysfunction in nerves, Serra says, because they were undetectable with the relatively blunt diagnostic tests used in the past. Peripheral nerves, Serra says, are incredibly sensitive to slight changes in their surroundings, which can alter their activity. “The excitability of nerves is very fine-tuned,” he emphasizes. For example, a pain nerve fiber might be spontaneously active, but once the patient relaxes, that activity stops. That might happen because the patient’s breathing slows, perhaps changing the acidity of blood, or some other factor in the nerve fiber’s environment. “Just this little change in balance determines whether the nerve is firing or not firing,” Serra says. This finding, he explains, also fits with the relationship between stress and pain. “We know this—all patients say, ‘when I’m stressed, I’m worse, and when I’m relaxed, I feel better.’”

Stress and trauma have long been known as contributing factors in fibromyalgia, but researchers are still struggling to find out how they increase risk. “We know that psychology is strongly associated with chronic pain,” Staud says. “Emotional trauma is one of the vulnerabilities for the pain modulatory system, and families with emotional disorders are at much higher risk for chronic pain than others.” Genetic differences—in genes associated with pain or stress, for example—may explain some of that risk, but traumatic experiences seem to accelerate development of fibromyalgia, even in the absence of physical injury.

“Clearly any kind of stress or trauma can bring it on, whether it’s physical, emotional or even a stress on the immune system,” Clauw says. “That includes everything from early-life trauma to a major auto accident to the psychological stress of being deployed to war. Stress is so important.” Today, researchers are actively investigating what types of substances might circulate in the blood or affect the brain to link stress with fibromyalgia. The top contenders include stress hormones and inflammatory molecules released by immune cells in the brain or body.

End of the line?
Many researchers agree that what is now called fibromyalgia—characterized by widespread pain, fatigue, and cognitive and emotional disturbances—may be the final station on the chronic pain track. “Fibromyalgia is the endpoint—the end of the continuum,” says Clauw. “And maybe we can prevent people from getting there if we identify their risk early and treat aggressively,” which might include anti-depressant medications shown to improve fibromyalgia pain in some patients, he says.

Staud went further, saying that everyone might be at risk for chronic pain. “It’s not just the end of the line for chronic pain patients; it’s the end of the line for all of us.” How quickly we get there, he says, depends on how well we can fend off risks. “If you avoid significant trauma in life, be it physical or emotional, that can help keep your pain modulatory system very active and competent.” Otherwise, he says, “you get closer to chronic pain.” Of course not everyone develops chronic pain; some people seem to be protected for life. “For some, it’s a very flat trajectory toward that endpoint; for others, it’s very steep.”

How can people build up this protection to stave off chronic pain? Staud says there are four concrete steps to take in order to minimize risk, whether an individual already has chronic pain or not. First, prevention of injuries or other traumatic events that can lead to pain is important. Of course, this is not always possible, but for someone with fibromyalgia, it might mean avoiding stressful situations that could trigger a pain episode. Second, Staud says, physical exercise seems to condition the body against pain. Third, sleep is also protective, so getting as much high-quality sleep as possible will help. Finally, psychological coping skills are protective against pain. “The ability to adapt to stress of all sorts is critical,” Staud says. Cognitive-behavioral therapy (CBT), mindfulness, and supportive social interactions can all help build this resilience. However, Staud says, “there is a relatively small group of people who practice these steps consistently and effectively. The majority of the population does not.”

Staud stresses that all of these recommendations require tremendous effort on the part of the patient—effort they might not be able to expend. Telling people with fibromyalgia to exercise, sleep more and get therapy, he says, “is similar to telling poor people to save more money and be frugal in order to get rich.” Staud says the emphasis in pain care should instead be on prevention and early recognition, and then on building financial, social and emotional support for patients.

But, for those who are able to exercise, Sluka says the research shows that physical activity is perhaps the single most effective approach to alleviate chronic pain. “In the scientific literature, there is strong support for exercise as a way to mitigate pain—it’s one of the most effective treatments,” but only recently are doctors coming around to the idea of “prescribing” exercise for pain. Inactivity, she says, which is common in fibromyalgia patients, might contribute to or even cause some symptoms of fibromyalgia. “Research shows that higher physical activity leads to greater pain inhibition, it can improve cutaneous nerve innervation [the health and number of nerve fibers supplying the skin], and it can alter the immune system. Exercise does wonderful things.”

Sluka also says it is important that patients play an active role in setting the course for their treatment, though this does place an additional encumbrance on patients already bearing the burden of chronic pain. “Patients need to take control and help manage their own condition,” Sluka says. That’s for two reasons: first, because things like improving sleep and getting exercise, which are under a patient’s control, may lessen pain and improve function. And second, by gaining a sense of control, patients can reduce their stress and pain.

Finding a doctor who recognizes fibromyalgia and is willing to try different approaches is also crucial. Some people suffer from fibromyalgia for years, seeing only doctors who tell them there’s nothing wrong with them, or they undergo surgery that doesn’t help, and they become discouraged. “For a lot of people, this is a long struggle. They end up beaten down, feeling helpless and hopeless,” Clauw says. When Clauw encounters these patients, he says it’s very difficult to help them. “We have to attempt to prop them up and reinvigorate them. Patients have to embrace the fact that there are things they have to do to get better. We can’t give them a drug to cure this—we can’t do that with any pain condition. The goal is to get pain appropriately diagnosed and treated early on, so they don’t get to that end of the pathway.”

“The notion that there’s nothing we can do for people with fibromyalgia is really just wrong,” Clauw says. “When you look at everything available, there is almost always something that will help.” It’s important to try different medications and nondrug therapies, he says, because which treatments may work will vary from person to person.

Although many questions about the causes and treatment of fibromyalgia remain unanswered, Serra says, “it’s a very exciting moment in pain research. We’re beginning to see things we couldn’t even imagine. We will begin to make sense of this disease soon.”

Stephani Sutherland, PhD, is a neuroscientist, yogi, and freelance journalist in Southern California. Find her at or on Twitter @SutherlandPhD

Additional Reading:

Fibromyalgia: Maligned, Misunderstood, and (Finally) Treatable by Bret Stetka, Scientific American

Nerve Damage Might Explain Chronic Pain by Stephani Sutherland, Scientific American Mind

Related RELIEF content:

Is There a New Explanation for Fibromyalgia? A Podcast with Anne Louise Oaklander

Related Pain Research Forum content:

Multiple Studies, One Conclusion: Some Fibromyalgia Patients Show Peripheral Nerve Pathologies

Elucidating the Pathophysiology of Peripheral Neuropathies: A Conversation With Claudia Sommer

Wednesday, 12 July 2017

How Veterans May Learn To Cope Better With Chronic Pain

Today's post from (see link below) is directed at veterans who have to deal with chronic pain both physical and mental. The idea being that if they develop what they call, 'self-management' programs, they can become less reliant on drug treatments and especially strong opioids. You can extrapolate this information to include all people living with chronic pain (also veterans in their own way) but when it comes down to it, it does seem to be somewhat contrived in order to reduce the so-called pain drug problem. There's nothing to disagree with here - we all know that we need a more holistic approach to chronic pain treatment and that relying on drugs alone, is both ineffective and asking for trouble. However, I do wonder if most chronic pain sufferers are resistant to the work they, themselves have to put in in order to 'self-manage' their treatment. If the drug prescription is properly managed by the issuing doctor, then problems of addiction and side effects shouldn't arise. I would suggest that people are only open to other holistic approaches if first, their pain is significantly reduced - not the other way round. Only then do patients feel strong enough to introduce other methods into their treatment plan. What do you think?

Self-management programs help veterans to better manage and cope with pain symptoms
May 22, 2017

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Self-management programs are teaching veterans with chronic pain to become more active, manage symptoms, reduce stigma and frustration, and minimize depression and other mood disorders, according to a VA researcher speaking today at the American Pain Society Annual Scientific Conference,

Robert Kerns, Ph.D., professor of psychiatry, neurology and psychology at Yale University, spent 38 years practicing in VA healthcare, most recently the VA Connecticut Healthcare System. He reported in a plenary session presentation that the VA's applications of cognitive-behavioral therapies (CBT) and other approaches are helping veterans better manage their pain through standardized pain assessments, alternative therapies, patient education and self-care. The VA also is succeeding in reducing drug use.

"The proportion of VA patients receiving high doses of opioids has decreased significantly in the last four years concurrent with greater use of non-drug alternative pain therapies," said Kerns. "Several trials have shown that when patients are engaged in their own care they have less pain, less depression, and are more physically active."

The VA estimated in one study that 44 percent of soldiers in an Army infantry brigade reported chronic pain three months after returning from tours of duty in Afghanistan and Iraq – double the rate among civilians. Spinal disorders have increased by 300 percent in the last 50 years and now rank as the number-one cause of disability in the United States and in the military.

Kerns added the National Pain Strategy's strong advocacy of self-care will provide more educational resources and greater incentives to help physicians empower their patients to become more proficient at managing and coping with their pain.

The National Pain Strategy, released last year by the U.S. Department of Health and Human Services, places strong emphasis on self-management and patient education as critical pathways for improving treatment of chronic pain. Kerns added that the VA is funding several research projects to evaluate the efficacy self-management interventions for persistent pain, including novel approaches that employ advanced communication technologies.

"Specifically for pain management, self-care programs involve gaining knowledge about pain and building skills and confidence to prevent, cope with and reduce pain," said Kerns. The overall objective is to promote adoption of an effective approach to pain self-management, similar to models for treating chronic illnesses."

Kerns added that in re-conceptualizing pain as a chronic disease, it is imperative to understand that pain management is not a cure, realistic therapy goals must be established, and the overall focus should be placed on achieving optimal functioning, well-being and quality of life.

Elements for successful self-management of chronic pain therefore include:

Empowering persons with pain through reassurance, encouragement and education
Conservative use of analgesics and adjuvant medications
Promotion of regular exercise and healthy and active lifestyles
Development of adaptive strategies for managing pain.

Kerns described the role communication technology is playing in helping the VA to promote access and engagement in pain self-management. "Attendance at sessions is the key variable governing treatment outcomes," said Kerns. "Technology is making it easier for more vets to participate in cognitive-behavioral therapy through real-time video conferencing, apps for smartphones, phone-based interactive voice response and web-based CBT interventions for pain and co-prevalent mental and behavioral health problems."

Outcomes for the VA program were published in JAMA Internal Medicine this year and showed that patients accessing CBT remotely did just as well as patients receiving in-person therapy. Patient surveys provided additional verifications. On a seven to 10 scale, the average response of 22 patients was 7.75 in answering the question: "How confident are you that this treatment successfully helped you with your pain?"


Tuesday, 11 July 2017

Dammit! Find A Drug For Neuropathy That Works!

Today's post from (see link below) is yet another damning report on the efficiency (or lack of) of drugs currently used to treat neuropathic symptoms. Once again it confirms what all neuropathy patients know and that is that if something works for them, that's the result of luck rather than anything else. The article deplores the state of affairs which as been pretty much unchanged for 50 years and calls for the development of new drugs to tackle the problem. However, we all know that the pharma companies are throwing money at research in the race to be the first to come up with an evidence-based successful drug for nerve problems but up to now, all promising leads have led to a dead end. Meanwhile, millions of sufferers across the world have to put up with whatever they're prescribed and now also have to face the stigma of being part of a drug problem that was not their making. Perhaps the most astonishing fact is that if you ask ten people on the street what neuropathy is, they haven't a clue! It leaves you almost speechless but that's the reality of having severe neuropathy in 2017.

Evidence Lacking for Current Pharmacologic Treatment of Neuropathic Pain
—Chase Doyle MAY 19, 2017

Successful management of neuropathic pain remains elusive despite the variety of pharmacologic classes prescribed to treat it, new research suggests. Furthermore, the actual evidence supporting drugs used on an everyday basis is remarkably deficient, according to Richard W. Rosenquist, MD, the study’s author and chairman of the Department of Pain Management at the Cleveland Clinic, in Ohio.

“We’d like better evidence, but we don’t really have it,” Dr. Rosenquist said. “There is marginal evidence for the use of a broad range of oral agents to treat neuropathic pain.”

He surveyed the literature on current pharmacologic management of neuropathic pain and shared the “frustrating, surprising and maybe even appalling” results at the 2016 annual meeting of the American Society of Regional Anesthesia and Pain Medicine (ASRA).

Anticonvulsant Drugs

A review of gabapentin use for chronic neuropathic pain patients demonstrated no first-tier evidence for analgesic efficacy in chronic neuropathic pain and fibromyalgia (Cochrane Database Syst Rev 2014;4:CD007938). The research, which is an update of a review published in 2011 (Cochrane Database Syst Rev 2011;3:CD007938), included data from 37 studies and 5,633 participants looking at oral gabapentin at daily doses of 1,200 mg or higher to treat 12 chronic pain conditions. Second-tier evidence for an outcome of at least 50% pain intensity reduction showed that gabapentin was not significantly better than placebo for treating postherpetic neuralgia.

“You needed to treat at least eight people to get some effect with gabapentin, and only a small number of people experienced significant relief of pain,” Dr. Rosenquist said. “You’ve got to treat a lot of people with gabapentin to get a meaningful reduction in pain.”

A separate analysis composed of data pooled from 18 randomized controlled trials comparing the therapeutic response to pregabalin in patients with neuropathic pain showed no significant differences between patients who had recceived gabapentin and those who did not, in extent of pain relief and relief of pain-related sleep interference for any dose (Pain Pract 2016 Sept 9. [Epub ahead of print]).

Dr. Rosenquist said these findings highlight the importance of tailoring treatment of neuropathic pain based on individual patient response to different treatments, including the trial of multiple agents within the same mechanistic class. “Even if you’ve failed gabapentin, it’s worth trying pregabalin because they don’t behave the same. We think about these drugs as though they’re interchangeable, but they’re probably not.”


Although a variety of antidepressants commonly are used to treat chronic neuropathic pain, amitriptyline is often recommended as first-line therapy, according to researchers. However, an updated version of a 2012 review follows the “same disturbing trend” as anticonvulsants, Dr. Rosenquist said. Researchers found no first- or second-tier evidence for amitriptyline in treating any neuropathic pain condition; only third-tier evidence was available (Cochrane Database Syst Rev 2015;7:CD008242).

Even though these findings were disappointing, the authors pointed out that “a lack of supportive, unbiased evidence for a beneficial effect should be balanced against decades of successful treatment in many people with neuropathic pain.”

They recommended that amitriptyline should continue to be used as part of the treatment of neuropathic pain, “but only a minority of people will achieve satisfactory pain relief.”

In a separate study, duloxetine was shown to be noninferior to pregabalin for the treatment of pain in patients with diabetic peripheral neuropathy who had an inadequate response to gabapentin (Mayo Clin Proc 2011;86:615-626).

“These agents are out there,” Dr. Rosenquist said, “and if we fail one, the evidence says you need to try something else. You shouldn’t be quitting after a single drug.”

Benzodiazepines and Opioids

Benzodiazepines commonly are not used to treat neuropathic pain, and with the FDA’s recent black box warning about mixing benzodiazepines and opioids, many clinicians are revisiting their use of these agents.

Valium and clonazepam increase the inhibitory effectiveness of the neurotransmitter GABA in the spinal cord dorsal horn to suppress incoming nociceptive activity, but this is based on a limited number of studies. One review found no evidence of sufficient quality to support clonazepam for chronic neuropathic pain or fibromyalgia (Cochrane Database Syst Rev 2012;5:CD009486).

“This drug is not widely used, and there is not good evidence for widespread use, but there are subsets of patients that have challenges with spinal cord injury pain and transitional zone pain [for which it is effective],” Dr. Rosenquist said.

Opioids are in the headlines every day and mostly in a negative way, Dr. Rosenquist noted. A Cochrane review on fentanyl use for neuropathic pain in adults—at any dose and by any route of administration—showed insufficient evidence to support or refute the suggestion that fentanyl works in any neuropathic pain condition (Cochrane Database Syst Rev 2016;10:CD011605).

“Reading the evidence for drugs that we’ve been using on a day-to-day basis can be very frustrating,” Dr. Rosenquist said.

At least one glimmer of hope, however, can be found in the first study to compare the effects of methadone with fentanyl in cancer patients with a neuropathic pain component (Eur J Cancer 2016;65:121-129).

“Based on the results,” Dr. Rosenquist said, “methadone should be considered in the treatment of oncologic pain with a neuropathic component. … There may be a role for using methadone in this subset of patients.”

Oxycodone, in contrast, demonstrated very low-quality evidence for the treatment of painful diabetic neuropathy or postherpetic neuralgia, with no evidence for other neuropathic pain conditions (Cochrane Database Syst Rev 2016;7:CD010692).


Another glimmer of hope may come from a small short-term, placebo-controlled trial of inhaled cannabis that demonstrated a dose-dependent reduction in diabetic peripheral neuropathy pain in patients with treatment-refractory pain (J Pain 2015;16:616-627). This finding adds preliminary evidence to support further research on the efficacy of the cannabinoids in neuropathic pain, the study authors noted.

“It did help with pain,” Dr. Rosenquist said, “but it also interfered with subjects’ thinking. … Maybe we’re doing something about your pain, or maybe you just don’t care? Whether that’s a bad thing or not, we can leave open for debate.”

New Drugs Needed

“When we examine the published recommendations on neuropathic pain, we end up with a consensus statement without a strong evidentiary basis,” Dr. Rosenquist summarized. “Further guidance regarding appropriate patient selection and drug and dose strategies is needed to improve management with current drugs. If we’re really going to make a difference for our patients going forward, new drug development to treat these conditions with greater reliability and a smaller side-effect profile is urgently needed.”

Kevin Vorenkamp, MD, director of the pain medicine fellowship at Virginia Mason Medical Center, in Seattle, said this survey of the literature underscores the challenges of a very difficult patient population.

“I think we continue to have excellent targets, and even in animal models many of them have played out, but the challenge of treating the patient is that we’re treating more than just a simple nerve pain condition. There are other variables that are brought out: patients with multiple pain generators, patients with other comorbidities like anxiety and depression, etc.,” he said. “Hopefully, some medicines in development will prove clinically useful.”

Dr. Rosenquist writes educational materials for UpToDate, “an evidence-based, physician-authored clinical decision support resource.” Dr. Vorenkamp reported no relevant financial disclosures.

Monday, 10 July 2017

Travelling With Nerve Damage: What You Need To Know

Today's post from (see link below) looks at the problems of travelling with a nerve damage condition. In the main, neuropathy patients are fortunately not confined to wheelchairs (although many are) but that doesn't mean that travelling with neuropathy is a piece of cake - far from it - the energy required to travel is often physically and mentally painful enough to put people off going anywhere. However, why shouldn't we be able to travel across the world like everybody else in this day and age? It's often just a question of careful planning and preparation and thinking the journey through. This article caters more for the severely disabled but whatever your physical limitation, you should be able to adapt these useful tips to suit your own situation. As long as you expect the unexpected, there's no reason why a holiday should be out of the question and if it's successful, the benefits more than reward the effort.

Hit the Road: Traveling with a neurologic condition is not impossible. 
Kritz, Fran Neurology Now: April/May 2017 - Volume 13 - Issue 2 - p 17–19

With advance planning, lots of patience, and these 10 strategies, your next trip can be fun and invigorating. 
Two to three times a year Karen Utley, who lives in Clute, TX, boards a plane with her now 10-year-old daughter, Samantha, to visit family. Samantha loves to fly, and her mom delights in seeing how much her daughter enjoys the travel, especially trips to the ocean. But travel for Karen and Samantha is hardly a cinch. Samantha, who has CDKL5, a rare genetic form of epilepsy, has two or more seizures each week and requires a feeding tube and a wheelchair some of the time. Yet, despite these complexities, Karen packs the needed supplies, including liquid food for the feeding tube, medications, and Samantha's wheelchair, and sets off on their trips. “I want us to experience life fully and even with the extra packing and planning, travel makes us happy,” says Karen.

The Utleys are in good company. Each year people with a broad range of neurologic conditions—from multiple sclerosis (MS) and stroke to epilepsy and dementia—embark on trips from local jaunts to exotic adventures, taking into account any special needs. “I encourage my patients who can to travel,” says John Ferro, MD, FAAN, a neurologist at Vassar Brothers Medical Center in Poughkeepsie, NY, “but I also urge them to accommodate their needs so they come home energized and not set back.”

To ensure your next trip does just that, follow this 10-point plan.


Schedule an appointment with your neurologist, says Dr. Ferro. If you've had any physical changes or new symptoms such as fatigue or incontinence since your last visit, your doctor can adjust your medication. You can also discuss specific precautions, says Dr. Ferro. For example, if you have Parkinson's disease you'll want to stick to your normal sleep routine since fatigue increases the potential for falls. Or if you have MS, you'll want to avoid getting overheated, which can exacerbate symptoms, says Barbara Giesser, MD, FAAN, professor of clinical neurology at the David Geffen School of Medicine at UCLA. You can also ask your doctor for the name of a doctor or hospital where you'll be traveling in case of an emergency. And be sure the medications and other items listed on your patient portal are up-to-date so they can be accessed remotely, if necessary. Most importantly, a visit gives you and your doctor a chance to discuss whether you should postpone or amend your trip.


SKY SELFIE Frequent ...

Be sure your medications and refill orders at the pharmacy are current. If you'll be in a different time zone, ask your doctor or pharmacist for help scheduling your pills, especially in the first and last days of the trip. Also ask what to do if you miss a dose. Make a list of the generic names of your drugs; if you lose any while in a foreign country, you're more likely to find the drugs by their generic names. And store your medication in your carry-on baggage, advises Dr. Giesser. If your checked luggage gets lost, you'll have your drugs with you. Find out if medications or vaccines are required for your destination or if you should pack an antibiotic in case of an infection.


Explore websites about travel for people with disabilities: Long lists of travel sites are maintained by the Society for Accessible Travel and Hospitality ( and the Disabled Travelers Guide to the World (, created by Nate and Nancy Berger. Nancy, now in her seventies, had multiple strokes a couple of decades ago and cannot walk or use her hands. Yet, until her health began to decline three years ago, she and Nate had visited seven continents. Their website, which is continually updated, and a downloadable book ( offer details on how to plan and undertake trips to dozens of countries. Patient organizations such as the Parkinson's Foundation, Epilepsy Foundation, and Christopher and Dana Reeve Foundation also offer tip sheets. The Reeve Foundation, for example, suggests requesting a seat with removable armrests, which can make it easier to be transferred to the seat from a wheelchair. If that seat is in the same cabin as the ticket you purchased—economy, for example—there is usually no surcharge for someone with a disability. However, if the aircraft equipment is changed, the airline cannot guarantee that seat.


Call the customer service numbers for every place you'll go, from airlines and bus stations to restaurants and national parks, and discuss logistics, suggests Jill McClure, an information specialist at the Parkinson's Foundation. Some airlines, for example, limit the size and weight of wheelchairs, although they can sometimes store one wheelchair on board, depending on size. You generally can't reserve that wheelchair space online, but getting to the gate early can help improve your chances. For a summary of airline services for people with disabilities, visit, but also double check with the airlines themselves in case there have been changes. For a general travel checklist from the US State Department, which includes accessibility information for many countries, go to


Like all travelers, you need the usual papers when traveling overseas, such as passports, visas, special IDs if you're a senior, veteran, or student, and your itinerary with all your confirmation numbers. As a traveler with a disability, you'll also need a list of all your medications, a description of your condition, medical supplies you carry, and your limitations signed by your doctor, which the Transportation Security Administration (TSA) and foreign security agencies may want to see. You may also need letters or emails from hotels, airlines, cruises, cab companies, and recreation sites confirming their disability services. (These confirmation letters can help you get backup services—such as an accessible room at another hotel—if what you were promised is not available.)



By booking early, you improve your chances of reserving accessible hotel rooms and cruise berths—and securing lower prices. Ask about travel options. Amtrak offers 15 percent discounts on many fares for both travelers with disabilities and a companion, for example. Many tourist attractions offer discounted or free admission to travelers with disabilities and at least one companion. Check websites for up-to-date information. For expenses that don't come with a disability discount make sure you have a current AARP or AAA card as well as student, military, or veteran IDs, if applicable.


Traveling with a friend or family member may be critical, not just a good idea, especially if it's your first trip. Karen Jackson, 56, of Alexandria, VA, a retired athletic trainer and administrator who has MS, says she usually travels with a friend both for the fun factor and the unexpected needs. “On a recent trip to Chicago, the hotel bed was higher than I could climb onto,” she says, “and I needed my friend to help me up.” Her friend also helped with storing Jackson's wheelchair before takeoff.


Travelers with disabilities should allow more than the recommended time at the airport for domestic and international flights, especially if you'll be getting a wheelchair at the airport or stowing one in cargo. If you have time to spare, you may be able to buy a day pass for an airline club, which often allows you to store your carry-on luggage. Clubs also have accessible bathrooms, snacks and drinks, and outlets to charge devices. If you purchase the pass at check-in, you may pay less.


Many travelers have their own system for folding and storing their wheelchair before flying. Karen Jackson asks to meet the person in charge of cargo to show him or her how to fold the chair, which reduces the chances it will be broken at her destination. She also wraps the joystick in bubble wrap, and takes the seat cushion with her on the plane. If you have any problems with your wheelchair, or any other travel concerns, look for the “chief resolution officer,” advises Jani Nayar, executive coordinator of the Society for Accessible Travel and Hospitality. Since travel can be more fatiguing than your normal routine, consider using assistive devices such as canes, walkers, and wheelchairs, even if you don't use them all the time, says McClure. You can request one at airports and often at recreation sites such as Disney World. For airports, request a wheelchair when you book your flight, says Nayar, then call the airline 48 hours ahead to be sure your request has been documented. You'll need to check in at the counter rather than at a ticket kiosk in order to meet the attendant with the chair.


Being in a wheelchair does not guarantee that you'll be able to cut a long security line, so for US airports consider applying for TSA PreCheck at This prescreening program from the TSA requires an online application, a brief in-person interview, usually at a local airport, and an $85 fee. You may have to wait a few weeks to get an interview so apply early. In February 2017, 97 percent of TSA PreCheck members waited less than 5 minutes, according to the TSA, compared to 20 minutes on average for the regular line—which can be longer during busy times.

If you're traveling internationally, consider a Global Entry card from US Customs and Border Protection. It costs $100 for a five-year card but includes TSA PreCheck privileges and a likely shorter wait at Passport Control when you return to the United States.

If you're unable to get out of a wheelchair for the airport security screening, call TSA Cares at 855-787-2227 or email at least 72 hours before your flight, advises Mike England, a TSA spokesman. This special office can answer questions about screening and medical supplies, including liquids, you can take with you. You can also ask for a passenger support specialist to meet you at the screening checkpoint to help with the process. And go to for information on what you can carry on board.

All this planning may seem daunting, but getting each piece in place increases the chance for a more enjoyable and seamless trip, says Jackson. And the extra effort is worth it, she says. Dr. Giesser agrees. “Don't let disease limit you,” she says. “If you possibly can, get good medical advice, plan accordingly, then go ahead and get on the road.”


© 2017 American Academy of Neurology