Monday, 20 October 2014

Educating The Nervous System To Ignore Pain

Today's post from (see link below) is an excellent explanation of the complexity of chronic pain as a condition and how modern drugs are frequently ineffective in dealing with it. The need is for new drug compounds to address new neural receptors but although progress is being made, it will still take a very long time before the processes and drugs can be explored and refined. It is thought that by interrupting the signal between the pain and the brain (to put it very simply) there is a brief period when old pain memories can be erased. It's working in this area that may bring the most progress for nerve damage patients in the future. A fascinating article - definitely worth a read.

Teaching the Nervous System to Forget Chronic PainBy Eleanor Nelsen on Wed, 13 Aug 2014
“It was an emergency situation,” she says. The horse Sally was riding was barreling straight towards another, younger horse, and the only way to stop him was to pull back on one rein, hard. She felt a pop in her wrist. Heat shot up her arm, excruciating pain fast on its heels.

That was four years ago. No one knows quite what happened to her wrist that day, but whatever it was has left her with constant pain that stretches from her fingertips to her neck, and sometimes creeps into her ribs. On the really bad days, even a hug is unbearably painful.

Sally is my youngest sister, and she is one of an unlucky fraction of people for whom an injury catapults their nervous system into a state of chronic pain. The injury itself heals, but like an insidious memory, the pain lingers. We don’t know why. “The whole issue of the transition from acute pain to chronic pain—why some individuals develop that chronic pain and many don’t—is a major, major question,” says Allan Basbaum, a professor at the University of California, San Francisco. Genetics may play a role. So can the severity of the original injury. 

Today's painkillers are based on well-known compounds like morphine and are often highly addictive.

But what we do know is that once that pain has gotten a foothold, doctors and patients don’t have very many choices. “The irony is that morphine, the 2,000-year-old drug, still remains the number-one weapon against pain,” says Yves De Koninck, a professor of neuroscience at Université Laval in Canada.

And it’s not a weapon that anyone enjoys using. Opioids like morphine and oxycodone are famously addictive, and the numbers of people who abuse them are climbing. Painkiller overdoses now kill more people than cocaine and heroin combined. And while opioids are invaluable for acute pain, they’re less effective for persistent, chronic pain. In fact—in a particularly cruel irony—long-term opioid treatment can actually make pain worse. Non-opioid pain medications exist, but they don’t work for the majority of patients, and even then they are only partly effective. Chronic pain is like “a maladaptive memory.”

Opioids work so well for acute pain because they bind to the receptors the body has designed for its own painkillers—molecules like endorphins and dynorphins that blunt the pain response. Finding good alternatives to opioids for treating chronic pain will mean finding different neurological mechanisms to target—mechanisms that explain not just why people hurt, but why some people hurt for so long.

De Koninck has found such a mechanism. One of the keys to understanding chronic pain, he believes, is to pay attention to the similarities between long-lasting pain and another, very familiar, neurological process that makes some connections stick around longer than others: memory.

Chronic pain is like “a maladaptive memory,” Basbaum explains. Both constitute patterns etched in your brain and nervous system that quicken the connections between “snake” and “poison” or between “bump” and “ouch.” Evidence has been piling up that chronic pain and memory share some of the same cellular mechanisms—and now, De Koninck’s work has shown that a neurochemical trick used to erase memory may be able to turn off chronic pain, too.
An Unmet Need

The number of people struggling with chronic pain has been hotly debated, and the fact that chronic pain is broadly defined and difficult to quantify doesn’t help. But even conservative estimates suggest that about 20% of the population have had at least one episode of serious, chronic pain. In the United States alone, that’s more than 60 million people. “It’s a major unmet need,” De Koninck says.

Pain is physically and psychologically debilitating in way that few other conditions are. “In fact, it’s often the most debilitating component of many diseases,” De Koninck notes. And it sharply circumscribes the lives of people who suffer from it. People can find a way to live with the other challenges of painful conditions like arthritis, cancer, even paralysis, he says, but “if you actually ask the patient, their number-one concern, and the one thing that they want us to cure, is the pain.” When pain pathways are functioning properly, they play a protective role.

When chronic pain gets severe, many patients withdraw, sometimes even from their families. Sally says that she’s constantly nervous, afraid to accept invitations or do things that she loves—like riding horses—in case it makes her arm even worse. The ride that day, Sally says, “changed my life.” For some patients, chronic pain can lead to serious mental health problems—it’s strongly correlated with depression and suicide risk.

When pain pathways are functioning properly, they play a protective role. They are a relay of chemical and electrical signals that move from nerve endings to our brains. Pain teaches us to avoid things that are sharp, prickly, or hot. It’s the way our nervous system has adapted to living in a hazardous world. People who can’t feel any pain typically don’t live very long.

Our skin is packed with millions of specialized nerve endings, programmed to detect dangerous conditions like heat or pressure. When one of these pathways is activated, the neuron sends an electrical current shooting up its long, thin axon towards the spinal cord. When it reaches the end of the neuron, that electrical signal prompts the release of chemicals called neurotransmitters into the synapse, or the gap between the first neuron and the next. The neurotransmitters dock in receptors on the next neuron, triggering pores to open in the cell’s membrane. Charged particles rush in through these open pores, creating a new electrical current that carries the signal farther up the nervous system.
Nerve cells, like these seen here from a mouse's spinal cord, send impulses along their axons and connect over synapses.

The first handoff occurs in a region of the spinal cord known as the dorsal horn, a column of grey matter that looks, in cross-section, like a butterfly. From this first relay point, the signal travels to the thalamus, one of the brain’s switchboards, and eventually to the cerebral cortex, where the signal is processed and decoded.

After an injury, it’s normal for the damage sensors near the trauma site to be touchy for a little while. During that time, your nervous system is encouraging you to protect the damaged tissue while it’s healing. But sometimes that extra sensitivity, called “hyperalgesia,” sticks around long after it’s useful. Hyperalgesia is often a major component of chronic pain, and it means that people with chronic pain have to be unceasingly alert. For example, Sally says, before she hurt her arm, hot coffee sloshing onto her hand might have hurt for a few seconds. Now, a careless moment like that means days of burning pain.

Symptoms like this suggest that changes in the nervous system have migrated to the spinal cord. De Koninck believes that a major factor is the number of receptors on the signal-receiving neurons in the dorsal horn. If those neurons synthesize too many receptors, they’ll pick up too many neurotransmitter molecules. Then the neurons’ pores will flutter open to let charged particles in more often than they should, sending electrical signals shooting up to the brain at too high a frequency. The result is a pain signal that’s much stronger than it should be. De Koninck’s work gives us a new window into how it happens, and how to stop it.
Recall, Then Erase

The key lies in a study about memory that was published nearly 15 years ago. Long-term memories seem to depend on the synthesis of extra receptors, too, and scientists knew that blocking the synthesis of those receptors during a memorable event could keep memories from forming.

But what a group of researchers at New York University discovered was that there is a brief period when interrupting receptor synthesis can actually erase old memories. Memories are reinforced when they’re retrieved, but, paradoxically, during that process, even well-established memories have a brief window of vulnerability—like jewelry in a safe deposit box, memories are useless when they’re stored but accessible to thieves when they’re being used. A chemical called anisomycin blocks the production of receptors that neurons need to form memories. When the researchers injected anisomycin into rats’ brains right after triggering a particular memory, that memory didn’t just fail to get reinforced—it was erased altogether. The right chemical injected at just the right place at just the right time could erase the physiological “memory” of pain.

Accumulating evidence that pain and memory use similar mechanisms led De Koninck to wonder if this same neurochemical trick could erase chronic hyperalgesia. De Koninck and his colleagues made mice hypersensitive to pain by injecting their paws with capsaicin, the chemical responsible for chili peppers’ fiery bite. Capsaicin activates the same pain sensors that respond to extreme heat and can turn on hyperalgesia without the tissue damage that an actual burn would cause. After their capsaicin injection, the mice’s paws were more sensitive to pressure for hours afterward.

Before that sensitivity had had a chance to wear off, the team gave the mice a second capsaicin injection—and this time, they added an injection of anisomycin. What happened after this second injection is “like magic,” De Koninck says. When the second injection initiated the same flurry of neurotransmitters and electrical signals that encoded the hyperalgesia the first time—the pain analogue of recalling a memory—anisomycin shut down the pain-amplifying mechanism by keeping the spinal cord neurons from making extra receptors. “It’s in the process of reorganizing itself,” De Koninck explains, “and there there’s that window of opportunity to actually shut it back down.” The mice lost seventy percent of their hypersensitivity to pain.

The theory that overdeveloped connections other than memories could be attenuated by retriggering them “is not a new idea,” Basbaum says, “but the fact is, there really has been very little evidence that it’s doable.” De Koninck’s results suggest that the right chemical injected at just the right place at just the right time, can erase the physiological “memory” of pain. Ted Price, a professor at the University of Texas-Dallas, says that this “ paves the road to disease modification instead of just palliatively treating people with these terrible drugs like opioids, which everybody, everybody in the field wants to get away from.”
New Options

For now, there are a few other types of treatment doctors can turn to besides opioids. Antidepressants help some people, as do certain antiseizure medications. A controversial technique called “transcutaneous electrical nerve stimulation” may work by making sure that there are plenty of receptors in the dorsal horn for the body’s natural opioid chemicals; a wearable device using this technology was just approved for over-the-counter sale by the FDA.

Treatments based on De Konick’s capsaicin-anisomycin model would constitute an entirely new category of drugs. “When you find a new mechanism,” De Koninck says, “boy, it opens a whole new array of things.” But finding the right combination of chemicals won’t be easy. Capsaicin patches are already sold over the counter at drugstores, but anisomycin is far too indiscriminate for clinical use. Brian Wainger, a physician and researcher at Massachusetts General Hospital, says, “It’s obviously going to be a long time for a discovery like this to work towards a clinical approach, but I think it sort of sets a framework for some options.”

“Options” is a word that seems to come up a lot among pain specialists. One of the reasons chronic pain is so difficult to treat is because “there’s a lot of different forms of chronic pain,” De Koninck says. “But the arsenal that we have so far to treat it is still quite meager.” And the weapons we do have are woefully inadequate.

Still, discovering that this retrigger-and-erase phenomenon works for hyperalgesia, as well as for memory, suggests that it may be useful in other parts of the nervous system. If that’s true, these kinds of treatments could help with pain syndromes more complicated than hyperalgesia—conditions that are so severe that even light touches become painful, or in cases where patients experience pain with no stimulus at all.

One big advantage of De Koninck’s strategy is that it isn’t just an incremental improvement, a way to make a slightly more effective or slightly less addictive analgesic. It’s a totally different angle on the problem. It targets the “chronic” part of chronic pain. “What the field I think really needs is options,” Price says. “And more importantly, patients need options.” For millions of people, and their doctors, a totally different angle is exactly what they’ve been looking for.

Tell us what you think on Twitter #novanext, Facebook, or email.

Eleanor Nelsen

Eleanor Nelsen is NOVA's 2014 AAAS Mass Media Fellow. She has also written for QUEST Science and Wisconsin Public Television.

Other posts from this contributor

Sunday, 19 October 2014

Persuade The FDA To Pay More Attention To Neuropathy

Today's post from (see link below) the site of the US Neuropathy Association, is a call to arms. It asks people to contact the FDA and advocate in other areas, to give neuropathy more visibility in the field of debilitating diseases. Despite upwards of 20 million Americans alone suffering from neuropathy, if you ask the average man on the street if they have ever heard of it, you may well be met with blank stares. It's time that neuropathy gained a greater voice and became better known by the public at large. This article asks people to make the FDA more aware of neuropathy as a major and growing problem, thus inspiring more research and better treatment strategies. If you don't live in the USA, doing exactly the same with your own national health authority, will eventually bring improvements in your own area. Letting them consign neuropathy to the backwaters of public health is not an option. Try to take action now.

ADVOCACY ACTION ALERT! Your Chance to Urge the FDA to Give Neuropathy More Attention
By Natacha T. Pires, MBBS, Director, Medical and Public Affairs October 9, 2014

We have a time-sensitive opportunity to tell the FDA to give neuropathy more attention.

On April 11, 2013, the Food and Drug Administration (FDA) published a Federal Register notice (78 FR 21613) announcing the disease areas for meetings in FYs 2013-2015, the first 3 years of PDUFA V. In selecting the set of disease areas, FDA carefully considered the public comments received and the perspectives of review divisions at FDA. While neuropathy was on the FDA’s preliminary list of nominated disease states, it did not make the final list of diseases areas for meetings in FYs 2013-2015.

Click here to submit your comments online
to the FDA by December 5th, 2014…

Now, the FDA is initiating a second public process for determining the disease areas for FYs 2016-2017. The FDA will consider the public comments received through the public docket and publish the set of disease areas for FYs 2016-2017 in a Federal Register notice. Neuropathy is not included in the preliminary list of nominated disease areas for consideration in the patient-focused drug development meetings scheduled for fiscal years (FYs) 2016-2017. However, neurological and autoimmune diseases treated with IVIG -- such as CIDP and MMN, among others -- are included in the preliminary list. But this represents only a segment of our neuropathy community...


Even though neuropathy is not included in the preliminary list of nominated disease areas for consideration in the patient-focused drug development meetings scheduled for fiscal years (FYs) 2016-2017, the FDA is interested in public comment on disease areas that are not represented on the preliminary list. The FDA needs to hear about the impact of all forms of neuropathy on patients, the range of severity, what matters most to you in getting benefits from treatments, and the adequacy of existing treatments you are using for your neuropathy.

When proposing additional disease areas for consideration, the FDA asks to describe how you applied the following criteria in making recommendations for additional disease areas to consider:

- Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;

- Disease areas for which aspects of the disease are not formally captured in clinical trials;

- Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives; and

- Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly).

All of us – patients, caregivers, health care professionals, researchers… -- must commit to submitting public comments to ensure neuropathy has a better chance of making the FDA’s list in 2016-2017.

Click here to submit your comments online to the FDA by December 5th, 2014…

Alternatively, you may submit written comments (be sure to include the following identifier “ID: FDA-2012-N-0967-0595” with your comments) to:

Division of Dockets Management (HFA-305)
Food and Drug Administration
5630 Fishers Lane, Rm. 1061
Rockville, MD 20852

Don't miss this chance to advocate for your needs and for the needs of our community!

Saturday, 18 October 2014

Is Tai Chi Useful For Neuropathy?

Today's post from (see link below) looks at the benefits of Tai Chi for people who have balance issues and are prone to tripping or falling and that includes many neuropathy patients. Not only this but tai chi helps to provide the exercise all neuropathy patients need to keep their muscular strength and keep the nervous system active (although some may say that in neuropathy the nervous system is active enough!). The last benefit may also be mental, in that it's a dynamic but very relaxing form of exercise and with neuropathy, emotional well-being is very important to a reasonable quality of life. Many people with neuropathy quickly become aware that balance is an issue and may find that tai chi improves their sense of balance considerably. This useful article explains tai chi in an understandable way and may well encourage you to give it a try.

Try tai chi to improve balance, avoid falls
Stephanie Watson, Executive Editor, Harvard Women's Health Watch Posted August 23, 2012, 9:00 am

Compared to the pumping intensity of spin or Zumba, a tai chi class looks like it’s being performed in slow motion. Watching the gentle, graceful movements of this ancient Chinese practice, it’s hard to imagine that tai chi can burn off a single calorie or strengthen muscles. But this exercise program is far more dynamic than it looks.

“The slowness that you see from the outside can be deceptive,” says Dr. Peter Wayne, research director of the Osher Center for Integrative Medicine at Brigham and Women’s Hospital and Harvard Medical School. As an aerobic workout, tai chi is roughly the equivalent of a brisk walk (depending on the intensity at which you perform it). And as a resistance training routine, some studies have found it similar to more vigorous forms of weight training, says Dr. Wayne, who is also founder and director of the Tree of Life Tai Chi Center in Somerville, Massachusetts and co-author of The Harvard Medical School Guide to Tai Chi (due out next spring).
Tai chi and balance

With its integrative approach that strengthens the body while focusing the mind, tai chi addresses a range of physical and mental health issues—including bone strength, joint stability, cardiovascular health, immunity, and emotional well-being. Tai chi is especially useful for improving balance and preventing falls—a major concern for older adults.

Studies have shown tai chi to reduce falls in seniors by up to 45%, Dr. Wayne says. It can also improve balance in people with neurological problems. A recent study in The New England Journal of Medicine found the program particularly effective for balance in people with Parkinson’s disease.

Tai chi helps improve balance because it targets all the physical components needed to stay upright—leg strength, flexibility, range of motion, and reflexes—all of which tend to decline with age.

Interestingly, one of tai chi’s biggest benefits to stability isn’t physical—but emotional.

“Anyone who’s had a fall or who has instability has what we call a ‘fear of falling,'” says Dr. Wayne. “Ironically, a fear of falling is one of the biggest predictors of a fall.” By making you firmer on your feet, tai chi takes away that fear, he says. Tai chi also makes you more aware of both your internal body and the external world, giving you a better sense of your position in space, so you won’t be as likely to trip and fall if you try to simultaneously talk to a friend and navigate a busy sidewalk.

Getting started in a tai chi program

One of the best things about tai chi is its adaptability to every age and fitness level. “I’ve had students in their late 80s,” says Jeffrey Shih-chung Matrician, who teaches tai chi at the Harvard University Center for Wellness. Because tai chi has “zero impact,” it doesn’t put too much strain on aging bones and joints, he adds. “But it’s not by any means something that’s only for the elderly, and it can be quite demanding for the young,” adds Shih-chung Matrician.

“You can start tai chi at most levels of health, and you can ramp up your activities to be appropriate to your level of fitness and function,” adds Dr. Wayne. He’s had students who’ve started out sitting in a chair—or even a wheelchair. Over time, they’ve worked their way into a standing position. Tai chi is also incredibly safe—even for people who are older and have chronic diseases. Dr. Wayne has conducted studies on tai chi that included participants who were awaiting a heart transplant.

To get started, “do a little research,” Dr. Wayne suggests. “Look for classes in your community, and then visit some classes that are convenient for you.”

Get a feel for the way the class is taught, and see if it matches your learning style. “There are quite a few styles and approaches to tai chi, and you can shop around to find one that suits you,” adds Shih-chung Matrician.

Once you’ve tried a tai chi class, you’ll see how this combination of slow, gentle movements adds up to one invigorating workout.

Friday, 17 October 2014

Can Gluten Bring On Neuropathy?

Today's post from (see link below) is another one linking gluten to neuropathic problems. It seems that nobody can make their minds up as to whether gluten really does have an effect on the nervous system. Some swear by a gluten free diet (not easy) and others dismiss the evidence as being circumstantial at best. It seems that in some people gluten triggers a reaction in the immune system that can lead to nerve damage. The only way to be sure is to try cutting down on your gluten intake and see whether this makes a difference to your symptoms but that's no easy task. Discussing the issue with your doctor is also advisable and certainly taking advice when it comes to implementing a gluten-free diet. 

Itching rash or tingling toes: Is gluten the cause?
Kay Cahill Allison, Former Editor, Harvard Health Posted September 21, 2011,  

I love bread, pasta, and many other foods made with wheat. Luckily, I can eat them all without having to worry about gluten. But I have to admit that the growing public awareness of gluten and the problems it can cause has got me thinking.

Gluten is an umbrella term for the proteins gliadin (in wheat), secalin (in rye), and hordein (in barley). Bakers know it as the substance that makes dough resilient and stretchy. In some people, gluten triggers an immune reaction and causes inflammation of the lining of the small intestine, which can eventually interfere with the absorption of nutrients from food. This is called celiac disease. Some of the more common symptoms of celiac disease are: 

Abdominal cramps
Foul-smelling stools
Weight loss
Skin rash

Some people have no apparent symptoms or their symptoms are so subtle that they never mention them to their doctor. As a result, celiac disease may be misdiagnosed or go undiagnosed for years.

A growing number of people who don’t have celiac disease suffer many of its symptoms. They are classified as “gluten sensitive” or “gluten intolerant.” You can read more about gluten sensitivity in the free online excerpt of “Food Allergy, Intolerance, and Sensitivity,” a new Special Health Report from Harvard Health Publications.

My dad developed the tingling, painful condition known as peripheral neuropathy late in his life. The cause was never clearly identified. While researching the topic of gluten sensitivity for “Food Allergy, Intolerance, and Sensitivity,” I read a research paper in the journal Neurology that said peripheral neuropathy can be a symptom of gluten sensitivity. It made me wonder if my father’s condition was linked to an undiagnosed gluten sensitivity. Digging further into the medical literature, I saw that a wide range of seemingly unrelated symptoms can be triggered by exposure to gluten and that a gluten-free diet can sometimes be an effective remedy. In one study published in the Archives of Dermatology, dermatologists found that going gluten-free can help relieve the itchy, red skin blisters of dermatitis herpetiformis. Clearly, gluten-related symptoms this diverse are hard to pin down.

I will never know whether my Dad might have benefited from a gluten-free diet because he passed away a few years ago. But it’s good to know that at least some people are being helped by the growing awareness of the problems gluten can cause.

More complete information on food allergies and reactions, including information on diagnosing and treating gluten-related conditions, is available in the new Harvard Medical School report, “Food Allergy, Intolerance and Sensitivity.” You can read an excerpt or purchase the report at

Thursday, 16 October 2014

Do Opioids Carry More Risks Than Benefits In Chronic Pain?

Today's post from (see link below) looks at a new statement regarding opioids from the American Academy of neurology. It states that the risks posed by opioid prescription use, outweigh the benefits for people living with chronic pain. However, their conclusions are based on the overal numbers of deaths and recorded addictions, which must include the use of opioids for recreational use, even if they are 'prescribed' by doctors. This may give a false impression. The study says that 50% of people on opioids are  still on opioids 5 years later, which is hardly surprising if they're prescribed for chronic pain. Chronic pain does not go away and opioids are not designed to cure it. They relieve symptoms to improve quality of life. If the pain is so severe that the last resort of opioids is prescribed, then they will continue to be necessary for some considerable time. The article does go on to suggest a list of controls that doctors should carry out on long-term opioid users and these are completely relevant  but otherwise, this study seems to reinforce current prejudices, especially in the USA, rather than acknowledge the true benefits to the quality of life of people in long-term chronic pain. It's an argument that will run for ever!
Risks of opioids outweigh benefits for headache, low back pain, other conditions  American Academy of Neurology (AAN) September 29, 2014


The risk of death, overdose, addiction or serious side effects with prescription opioids outweigh the benefits in chronic, non-cancer conditions such as headache, fibromyalgia and chronic low back pain, according to a new expert guideline.

According to a new position statement from the American Academy of Neurology (AAN), the risk of death, overdose, addiction or serious side effects with prescription opioids outweigh the benefits in chronic, non-cancer conditions such as headache, fibromyalgia and chronic low back pain. The position paper is published in the September 30, 2014, print issue of Neurology®, the medical journal of the American Academy of Neurology.

Opioids, or narcotics, are pain medications including morphine, codeine, oxycodone, methadone, fentanyl, hydrocodone or a combination of the drugs with acetaminophen.

"More than 100,000 people have died from prescription opioid use since policies changed in the late 1990s to allow much more liberal long-term use," said Gary M. Franklin, MD, MPH, research professor in the Department of Environmental & Occupational Health Sciences in the University of Washington School of Public Health in Seattle and a Fellow with the AAN. "There have been more deaths from prescription opioids in the most vulnerable young to middle-aged groups than from firearms and car accidents. Doctors, states, institutions and patients need to work together to stop this epidemic."

Studies have shown that 50 percent of patients taking opioids for at least three months are still on opioids five years later. A review of the available studies showed that while opioids may provide significant short-term pain relief, there is no substantial evidence for maintaining pain relief or improved function over long periods of time without serious risk of overdose, dependence or addiction.

The AAN recommends that doctors consult with a pain management specialist if dosage exceeds 80 to 120 (morphine-equivalent dose) milligrams per day, especially if pain and function have not substantially improved in their patients. The statement also provides the following suggestions for doctors to prescribe opioids more safely and effectively:

• Create an opioid treatment agreement

• Screen for current or past drug abuse

• Screen for depression

• Use random urine drug screenings

• Do not prescribe medications such as sedative-hypnotics or benzodiazepines with opioids

• Assess pain and function for tolerance and effectiveness

• Track daily morphine equivalent dose using an online dosing calculator

• Seek help if the morphine-equivalent dose reaches 80 to 120 milligrams and pain and function have not substantially improved

• Use the state Prescription Drug Monitoring Program to monitor all prescription drugs the patient may be taking

"More research and information regarding opioid effectiveness and management is needed, along with changes in state and federal laws and policy to ensure that patients are safer when prescribed these drugs," said Franklin.

Story Source:

The above story is based on materials provided by American Academy of Neurology (AAN). Note: Materials may be edited for content and length.

Journal Reference:

G. M. Franklin. Opioids for chronic noncancer pain: A position paper of the American Academy of Neurology. Neurology, 2014; 83 (14): 1277 DOI: 10.1212/WNL.0000000000000839

Wednesday, 15 October 2014

Can Words Alter Our Perception Of Pain?

Today's post from (see link below) looks at an interesting study using eye-tracking technology, of how people with chronic pain react differently to descriptive 'pain' words. The suggestion may be that by reading or using stronger words to describe out pain, we actually increase its importance in our minds and in effect, make it worse. It's very easy to say of course because when we are describing our pain to others, the tendency is to use language that will convince them that we really are in pain. Similarly, people who try to be modest, or play their pain down, will use lesser 'pain' vocabulary to avoid people feeling sorry for them. Whether this sort of study is valuable, is the question. Of course people living with chronic pain will react differently to particular words describing their symptoms - they do it every day of their lives. It's how their choice of words comes over to others that's more important.

Pain words stand out more for those experiencing it York University October 3, 2014


Ache, agony, distress and pain draw more attention than non-pain related words when it comes to people who suffer from chronic pain, a research using state-of-the-art eye-tracking technology has found.

Ache, agony, distress and pain draw more attention than non-pain related words when it comes to people who suffer from chronic pain, a York University research using state-of-the-art eye-tracking technology has found.

"People suffering from chronic pain pay more frequent and longer attention to pain-related words than individuals who are pain-free," says Samantha Fashler, a PhD candidate in the Faculty of Health and the lead author of the study. "Our eye movements -- the things we look at -- generally reflect what we attend to, and knowing how and what people pay attention to can be helpful in determining who develops chronic pain."

Chronic pain currently affects about 20 per cent of the population in Canada.

The current study, "More than meets the eye: visual attention biases in individuals reporting chronic pain," published in the Journal of Pain Research, incorporated an eye-tracker, which is a more sophisticated measuring tool to test reaction time than the previously used dot-probe task in similar studies.

"The use of an eye-tracker opens up a number of previously unavailable avenues for research to more directly tap what people with chronic pain attend to and how this attention may influence the presence of pain," says Professor Joel Katz, Canada Research Chair in Health Psychology, the co-author of the study.

The researchers recorded both reaction time and eye movements of chronic pain (51) and pain-free (62) participants. Both groups viewed neutral and sensory pain-related words on a dot-probe task. They found reaction time did not indicate attention, but "the eye-tracking technology captured eye gaze patterns with millimetre precision," according to Fashler. She points out that this helped researchers to determine how frequently and how long individuals looked at sensory pain words.

"We now know that people with and without chronic pain differ in terms of how, where and when they attend to pain-related words. This is a first step in identifying whether the attentional bias is involved in making pain more intense or more salient to the person in pain," says Katz.

Story Source:

The above story is based on materials provided by York University. Note: Materials may be edited for content and length.

Journal Reference:
Samantha Fashler, Joel Katz. More than meets the eye: visual attention biases in individuals reporting chronic pain. Journal of Pain Research, 2014; 557 DOI: 10.2147/JPR.S67431

Tuesday, 14 October 2014

Can Acupuncture Relieve Neuropathic Pain?

Today's post from (see link below) is a useful and easily understood look at how and if acupuncture can help relieve neuropathic pain symptoms. Acupuncture is often seen as an alternative therapy but if it is used as part of a combination of treatments, including any medication your doctor may give you, it may well be of benefit. If the acupuncture can reduce any of your pain or discomfort, then it's possible you can reduce the amount of drugs you are otherwise taking and that has to be a plus. However, it's a question of 'suck it and see' because while it may work well for some, it may not work at all for others. That said, that applies to your drug treatments too, so giving acupuncture a try may well be worth your while. Always take care that you choose a qualified and recognised acupuncturist though, there are many charlatans out there willing to take your money!

Acupuncture For Neuropathic Pain
By Joe Carlon|October 3rd, 2014

Most westerners know what acupuncture is even if they have never experienced it for themselves. This ancient Chinese medicine has been practiced for millennia as a way to increase the body’s natural energy flow and promote healing. Trained acupuncture practitioners use fine needles that they place in strategic points on the human body that correspond to specific energies.

Acupuncture has been successfully used to augment other treatments for chronic pain and other conditions, such as sports injuries. Patients dealing with the effects of neuropathic pain may see improvement of their condition based on the opening of these energy pathways in the body.

Neuropathic pain is a chronic condition most common in individuals who have experienced tissue damage. These damaged nerves send incorrect pain responses to the brain even when painful stimuli are not present. The pain can present itself as numbness or the tingling sensation of “pins and needles.” Like many chronic conditions, neuropathic pain doesn’t just affect the physical body. It can often lead to difficulty sleeping, anxiety, and depression. For this reason, a holistic approach to treatment is highly encouraged to focus on the entire mind, body, and spirit of a patient dealing with the effects of neuropathic pain.

There are many causes of neuropathic pain and some have unknown origins and can be difficult to treat conventionally.

Common neuropathic pain conditions include:

Complex regional pain syndrome
Diabetic neuralgia

These conditions affect the nerve pathways in the body. Your nervous system is what carries electrical impulses to the rest of your body from your brain. A healthy nervous system will respond to painful stimuli in a way to tell you to stop doing the action that is causing the pain. However, damaged nerves can send pain responses to the brain even when external stimuli are not present. This can be a debilitating condition.

How can acupuncture help with neuropathic pain?

Because of the range of causes and complex nature of nerve damage and neuropathic pain the remedies also need to be varied and even holistic in nature. Acupuncture can be used but additional methods with the treatment can help.

Electroacupuncture, a procedure where electrodes are placed on the needles, can help with range of motion and sensation problems. It also helps promote the growth of new, healthy nerves. Moxabustion, a treatment that uses burning herbs and heat therapy, can be used to help with spasms, fatigue, the tingling sensation causes by nerve damage, and inflammation. Some acupuncturists are trained in the use of a small hammer called a plum blossom needle. This is tapped against the skin. It also promotes nerve regrowth and can reduce pain in various conditions including post-herpetic neuralgia, a condition caused by shingles.

A small-scale study published by the British Medical Journal in 2011 showed that acupuncture could help individuals suffering from nerve pain as a result of cancer treatments. Patients treated with certain cancer medications are at risk of developing a condition called chemotherapy induced peripheral neuropathy (CIPN).

Like any cause of peripheral neuropathy, this creates a sensation of pain or tingling in the hands and feet of affected patients. However, like with most forms of nerve pain, there is no definitive cure. The study was created to determine if acupuncture could help patients feel relief from the condition overall. Study authors noted that:

“Out of a total of 192 patients with peripheral neuropathy eligible for inclusion in the study, 11 had developed their symptoms during a course of chemotherapy for various types of cancer. Six of these patients agreed to undergo acupuncture; the other five served as a comparison group.”

After acupuncture treatments the majority of patients in the study found that their overall pain sensations were reduced.

The researchers suggested that the science behind acupuncture, which increases blood flow to the affected areas of the body, may help promote the growth of new, healthy nerves. The authors of the study believed that the positive results were encouraging for patients suffering from CIPN. This lends some proof to the idea that acupuncture could benefit patients with other forms of neuropathic pain.

Acupuncture as part of a comprehensive pain management plan

The professionals at Harvard Medical School agree. In 2012 they published this article on their website promoting the use of acupuncture to treat pain.

Fibromyalgia, for example, is such a complex condition that effective treatments have not yet been established. There is no cure and the best that western medicine has been able to do is prescribe treatments for the individual’s symptoms.

Because of the unknown nature of the condition, it may be more advantageous for a patient to pursue more holistic methods for treating the entire condition as well as maintaining a healthy balance to their overall well-being.

There are very few negative side effects from the practice of acupuncture. The treatment is safe and effective for the majority of individuals that use it to help control pain and other symptoms. For this reason, it is beneficial to use this treatment in conjunction with an overall holistic approach for healing and quality of life. Working with medical doctors and trained specialists in holistic health can bring a balance to treatments and restore an overall sense of wellbeing to anyone affected by nerve pain.

The Harvard article goes on to say that the treatment may work better for some people and not for others, but since the risk is low it is practically a no-lose situation for patients who have not been able to find relief from more conventional methods.

To learn more about acupuncture, talk to a pain specialist trained in a variety of treatment methods to discover the best solutions for your specific nerve pain condition. The Harvard article encourages patients to seek out an experienced practitioner who is licensed in your state. However, not all states have a license requirement so the best resource may be an acupuncturist who holds a certification from the National Certification Commission for Acupuncture and Oriental Medicine

About the Author: Joe Carlon

At Holistic Pain, we have a passion for helping you and those who around you who suffer from pain find relief. Part of that passion extends to education and transparency. In our Holistic Pain blog, we focus on new research studies, along with our own tips, for maintaining and improving your quality of life, even with pain.

Monday, 13 October 2014

Is Desipramine A Useful Treatment For Neuropathy Pain?

Today's post from (see link below) is a close look at various studies of the antidepressant Desipramine (Norpramine) and its effectiveness as a drug to treat the symptoms of neuropathy. As many of you will know, antidepressants are often a first line treatment for neuropathic pain because of the effects they have on the brain's pain receptors and various channels that deal with pain signals. They often aren't enough, or they just don't work, or the side effects are too strong, leading to your doctors moving you on to anti-epileptic drugs, or opiates. Desipramine is a tricyclic antidepressant from the same class of medicines as amitriptyline, which is a very common first approach to neuropathic pain and it's very useful to see an objective examination of its effectiveness. The news isn't good I'm afraid and there was not enough evidence to suggest that desipramine is truly effective in calming neuropathic symptoms. The only shadow of doubt is that the authors state that not enough research has been done to make a judgement either way. In the meantime, discussing any treatments like this with your doctor is always advisable and asking probing questions should always pay off.
Desipramine for neuropathic pain in adults The Cochrane LibraryPublished Online: 23 SEP 2014
Leslie Hearn*,
R Andrew Moore,
Sheena Derry,
Philip J Wiffen,
Tudor Phillips

Editorial Group: Cochrane Pain, Palliative and Supportive Care Group



Antidepressants are widely used to treat chronic neuropathic pain (pain due to nerve damage), usually in doses below those at which they exert antidepressant effects. An earlier review that included all antidepressants for neuropathic pain is being replaced by new reviews of individual drugs examining individual neuropathic pain conditions.

Desipramine is a tricyclic antidepressant that is occasionally used for treating neuropathic pain.


To assess the analgesic efficacy of desipramine for chronic neuropathic pain in adults, and to assess the associated adverse events.

Search methods

We searched CENTRAL, MEDLINE, and EMBASE from inception to 29 April 2014, and the reference lists of retrieved papers and other reviews. We also used our own hand searched database to identify older studies, and two clinical trials databases for ongoing or unpublished studies.

Selection criteria

We included randomised, double-blind studies of at least two weeks duration comparing desipramine with placebo or another active treatment in chronic neuropathic pain. Participants were adults aged 18 years and over. We included only full journal publication articles.

Data collection and analysis

Two review authors independently extracted the efficacy and adverse event data, and examined issues of study quality. We performed analysis using three tiers of evidence. First tier evidence was derived from data meeting current best standards and subject to minimal risk of bias (outcome equivalent to substantial pain intensity reduction, intention-to-treat analysis without imputation for dropouts, at least 200 participants in the comparison, 8 to 12 weeks duration, parallel design); second tier from data that failed to meet one or more of these criteria and were considered at some risk of bias but with adequate numbers in the comparison; and third tier from data involving small numbers of participants and considered very likely to be biased or that used outcomes of limited clinical utility, or both.

Main results

Five studies treated 177 participants with painful diabetic neuropathy (104) or postherpetic neuralgia (73). The mean or median ages in the studies were 55 to 72 years. Four studies used a cross-over, and one a parallel group design; 145 participants were randomised to receive desipramine 12.5 mg to 250 mg daily, with most taking 100 mg to 150 mg daily following titration. Comparators were placebo in three studies (an 'active placebo' in two studies), fluoxetine, clomipramine (one study each), and amitriptyline (two studies), and treatment was for two to six weeks. All studies had one or more sources of potential major bias.

No study provided first or second tier evidence for any outcome. No data were available on the proportion of people with at least 50% or 30% reduction in pain, but data were available from three studies for our other primary outcome of Patient Global Impression of Change, reported as patient evaluation of pain relief that was 'complete' or 'a lot'. No pooling of data was possible, but third tier evidence in individual studies indicated some improvement in pain relief with desipramine compared with placebo, although this was very low quality evidence, derived mainly from group mean data and completer analyses in small, short duration studies where major bias was possible. There were too few participants in comparisons of desipramine with another active treatment to draw any conclusions.

All studies reported some information about adverse events, but reporting was inconsistent and fragmented. Participants taking desipramine experienced more adverse events, and a higher rate of withdrawal due to adverse events, than did participants taking placebo (very low quality evidence).

Authors' conclusions

This review found little evidence to support the use of desipramine to treat neuropathic pain. There was very low quality evidence of benefit and harm, but this came from studies that were methodologically flawed and potentially subject to major bias. Effective medicines with much greater supportive evidence are available. There may be a role for desipramine in patients who have not obtained pain relief from other treatments.

Plain language summary

Desipramine for neuropathic pain in adults

Neuropathic pain is pain coming from damaged nerves. It is different from pain messages carried along healthy nerves from damaged tissue (a fall, cut, or arthritic knee). Neuropathic pain is treated by different medicines than pain from damaged tissue. Medicines like paracetamol or ibuprofen are not usually effective in neuropathic pain, while medicines that are sometimes used to treat depression or epilepsy can be very effective in some people with neuropathic pain.

Desipramine is a tricyclic antidepressant from the same class of medicines as amitriptyline, which is widely recommended for treating neuropathic pain. Desipramine may also be useful in these painful conditions. In 2014, we performed searches to look for clinical trials where desipramine was used to treat neuropathic pain.

Five small studies, each with 24 to 54 participants, included 177 participants in total with painful diabetic neuropathy or postherpetic neuralgia. Studies were randomised and double-blind, but all had one or more sources of potential major bias that could lead to overestimation of efficacy. It was not possible to combine information from the different studies, but individually they indicated some benefit from desipramine (usually at a dose between 100 mg and 150 mg daily), compared with placebo, at the expense of increased adverse events. There was not enough information about other comparators to draw any conclusions.

There was too little information, which was of inadequate quality, to be sure that desipramine works as a pain medicine in painful diabetic neuropathy or postherpetic neuralgia, and no information about other types of neuropathic pain. Other medicines have been shown to be effective as treatments of first choice.

Sunday, 12 October 2014

Exercising Safely With Neuropathy

Today's post from (see link below) is a short one illustrating the importance of exercising when you're living with neuropathy. It also warns against the wrong sort of exercise and gives some useful tips. A good start to preparing an exercise regime that suits you best.

Safely Exercising with Neuropathy 
Dr. Noah Levine Sept. 15 2014

On September 25 – 28, 2014, the Super Run Classic Car Show is coming to nearby Henderson, Nevada. More than a thousand classic, vintage, hot rod, and muscle cars will flood downtown Henderson for an extended weekend. This is a great excuse to take a walk and enjoy a day out. It’s also a way to get exercise—though if you have diabetic neuropathy, make sure you take care of your feet.

Exercise is an important part of maintaining your health when you have diabetes. It helps your body use insulin, burns body fat, improves circulation, builds muscle, and strengthens bones. All of this helps combat diabetic foot complications. Even if you have neuropathy, which increases your risk for injuries that could become ulcers, keeping fit is good for you—but you need to do so carefully.

There are some activities you should avoid when you have neuropathy. Anything with repetitive hard impacts is bad for your feet. The regular, intense pressure may create blisters, stress fractures, or other problems that are likely to deteriorate quickly. This means running, jumping, long distance walking, and lifting heavy weights are not good activities for you.

Instead, invest your time in an alternative activity that is more diabetic foot-friendly. Low-impact, moderate weight-bearing exercises are best. They increase your heart rate and benefit your muscles and bones without putting too much pressure on your lower limbs. Water aerobics, cycling, chair work outs, light weight lifting, and walking shorter distances are all good options.

Whatever you choose to do, make sure you warm up and take it slow. Do activity in moderate temperatures and stay hydrated throughout. If you know you’ll be active for a while, bring a long a snack to make sure your blood sugar levels don’t drop dangerously low.

Of course, you need to make sure your feet are well-protected when you’re active. Wear appropriate footwear to support and cushion your lower limbs. You may need custom orthotics to stabilize and correct biomechanical issues. Your socks are important, too—wear fitted, moisture-wicking pairs to help protect against friction and fungal infections.

Saturday, 11 October 2014

Supplement Suggestions For Neuropathy

Today's post from (see link below) is directly related to this lady's neuropathy as a result of chemotherapy but the content and suggestions apply to all people living with neuropathy pain. One of the suggestions (cymbalta) is a drug which your doctor may or may not prescribe - there are many alternatives and that requires careful discussion with him or her. The rest are all valid but again, talking them over with your doctor is advisable before you hit the supplement stores. A recognisable account.

Peripheral Neuropathy after Chemotherapy – Supplements Suggestions
Cha Ching Queen May 31, 2013 
Vitamin and Supplement Suggestions for Peripheral Neuropathy after Chemo for Breast Cancer

Chemotherapy has many side effects, some of which can be long-term or even permanent. I was diagnosed with breast cancer in 2009 (read about my breast cancer here). Even though I finished my treatment about 3 1/2 years ago I still have lingering effects from the the chemo. One of the most bothersome is pain in my feet and hands, which as I found out a few days ago, is Peripheral Neuropathy from Chemotherapy most likely caused by the Taxotere.

I have been to many different doctors and tried a variety of homeopathic and pharmaceutical treatments. It’s hard to exactly describe the long-term chemo side-effects pain I have. At first I believed I had arthritis. I am not able to stand for long periods of time. The area around my joints hurt, with the majority of the pain about my big toe joint and the ball of my foot. It feels like I don’t have enough padding on the bottom part of my feet and the bone is hitting the hard floor.

My hands feel somewhat the same, although not quite as bad. I still have a hard time with some fine motor skills such as opening bottles and using a kitchen knife.

During my most recent appointment with the oncologist, she recommended I see a neurologist. My appointment with a neurological oncologist was earlier this week. I was a little nervous about seeing a cancer neurologist. That sounds scary, and I started worrying that maybe something was horribly wrong with my brain.

The neurologist did a ton of tests checking my reflexes, range of motion, vision, sensitivity, and more. He poked a safety pin up and down my feet, legs, hands, and arms. I never realized how bad my neuropathy really was. At the tips of my fingers and toes I could feel a sensation, but it wasn’t until the pin made it’s way further down my toe or finger, that I could really feel the prick. That was interesting.

So, here I am now with a diagnosis of chemo induced peripheral neuropathy. In addition to a few other daily medications, vitamins, and supplements I already take, the neurologist recommended quite a few others as well. Here are the recommended supplements and vitamins my neurologist suggests for peripheral neuropathy after chemotherapy.

Alpha Lipoic Acid 800-600mg BD
Vitamin B12 500mcg QD
Vitamin B6 25-50mg (I’m not taking this extra B6 because I get it in my multi-vitamin) QD
Vitamin B1 50-100mg QD
Gamma Amino Butyric Acid QHS
Phosphotidylserine and Phosphotidylcholine 300-900mg

Then, in addition to this, this is what I take daily to be healthy and help some of my lingering joint pain that was originally diagnosed as Fibromyalgia.
Tums (for Calcium)
Probiotics (digestive issues with occasional IBS attacks)
Alive Multi-Vitamin

Here’s a picture of what my morning looks like and all the pills I take.

Friday, 10 October 2014

The Flu Jab And Neuropathy: Potential Problems?

Today's post from (see link below) is an interesting article about how sensible it is to get your yearly flu shot if you also suffer from neuropathy. It's a subject that arises every year and most people see the consequences of having the flu as being more serious than the potential problems arising from the flu jab itself. However, there are possible problems associated with the boost to the immune system that the shot gives, not least a possible triggering of a relapse of neuropathic problems. You should talk it over with your doctor or specialist and make a decision based on the two sides of the argument. Will the jab make your current illness worse, or will catching the flu be a more serious factor for you? Neither is certain, so it becomes a case of risk assessment. Your doctor should be able to advise.
Should People with Neuropathy Pain Get a Flu Shot? 
Posted by Editor on October 2, 2014

If You Have Neuropathy Pain from Guillain-Barre Syndrome or CIDP, There Are Special Considerations When Choosing Whether to Have a Flu Shot. Keep Reading for Details On How to Weigh the Risks and Benefits.

Flu season will be here before we know it. Most healthy adults will choose to get a flu shot to help stop the spread of this sometimes incapacitating illness, which can be responsible for thousands of deaths every year. And finding a place to get immunized is easy, with availability at nearly any drugstore, pharmacy, and walk-in clinic. Your insurance may even cover the cost.

But for some, deciding whether to get a flu shot isn’t an easy decision. People with neuropathy pain face a tough dilemma due to potential reactions to the vaccine. The list of folks who may be wary of the flu vaccine due to possible side effects includes people with peripheral neuropathy caused by cancer treatments, immune disorders such as AIDS and HIV, celiac disease, liver or kidney disease, shingles, and diabetes.

It’s important for people with neuropathy pain to realize that the CDC (Centers for Disease Control and Prevention) actually recommends getting a flu shot due to the serious complications that can arise from flu exposure with certain underlying illnesses.

However, if you have neuropathy pain caused by some illnesses, including Guillain-Barre Syndrome and CIDP (chronic inflammatory demyelinating polyneuropathy), you will need to discuss this issue in detail with their doctors. That’s because the immune system stimulation from a flu shot can sometimes trigger a relapse of these illnesses. Many doctors will recommend waiting a year after symptoms cease before receiving a flu shot.

Who is most at risk of catching and transmitting the flu virus? The CDC says you may want to consider getting a flu shot if any of these apply to you:
You’re at least 50 years old. (Children under 19 are also at higher risk.)
You are dealing with a chronic serious medical condition, such as diabetes or heart disease.
You are a resident of a long-term care facility or nursing home.
You are living with someone who is in a high-risk category, such as a child who is below the recommended age for vaccination.

Ultimately, whether to be vaccinated for the flu is your decision. People with neuropathy pain should speak with their doctors about this issue before taking action.

Thursday, 9 October 2014

How To Kick Neuropathy Into The Glossies

Today's post from (see link below) is a call for more publicity for neuropathy. Despite the statistic of 20 million Americans alone suffering from neuropathy, most people still have very little idea of what it is and what it means for people trying to live with it. This article calls for better advocacy for the disease.

How can we kick neuropathy into the glossies?
Tuesday, 30 September 2014 Author // Dave R 

Dave R: Despite between a quarter and a third of people living with HIV ending up with neuropathy, it still draws blank stares from most people When will neuropathy become sexy enough to hit the headlines?

How can we kick neuropathy into the glossies?
I hate to be a kicker, I always long for peace but the wheel that does the squeaking is the one that gets the grease.”The Kicker’ Josh Billings 1818-1885

Apparently the figure of twenty million Americans alone with neuropathy isn’t enough to make it a Twitter Trending Topic, or a Facebook phenomenon. That’s maybe understandable when you think of the average age of social networkers but the fact remains that, one way or another we have to get neuropathy taken seriously as a major health problem.

In an ideal world you’d expect the doctors, medical authorities and drug companies to take the initiative. After all, with those statistics, there’s surely money and reputations to be made, but apart from a few serious neurology and diabetes conferences (where solutions are genuinely looked for), there’s nothing in the mainstream media that makes Joe the plumber sit up and take notice. Why are we missing the target?

What do we really need and what are we really asking for?

From the patient’s point of view we pretty much need universal understanding that what we’re suffering from is debilitating and life changing. We also need treatments that are effective and not necessarily ‘borrowed’ from other diseases. To achieve that, we need to persuade the drug companies that it’s worth investing research money in:
new studies designed to find ways of repairing nerve damage;
finding new ways of dealing with the pain and discomfort and
identifying the true cause of someone’s neuropathy.

In those respects, our aims are probably the same as those of neurologists and specialists who deal with HIV, diabetes, cancer and all the other contributing diseases to neuropathy. Quite a lobby, you might think! Surely enough to stimulate the cogs and wheels of corporate medical science, but up until now, it hasn’t been enough; it’s still ‘Neuro...what?’

Time for patients to take matters into their own hands maybe: grab neuropathy by the short and curlies and make it the discussion of the day in every family home and medical boardroom in the land? Too aggressive? Maybe but thinking back; HIV wasn’t taken seriously, or viewed sympathetically and the fear wasn’t removed, until brave people got on their soap boxes and yelled and shouted until it was.

Now nobody is demanding that we take to the streets with neuropathy banners and placards outside city halls at this moment and it wouldn’t do much good anyway because we’d just be told to get in the ‘needy causes’ queue. However, in order to get effective treatment, we really need neuropathy research to advance more quickly than it does and in order to do that in the modern world, we have to give it an image attractive to the real powers that be; the media.

Advocacy is the word.

Wikipedia defines advocacy as:

...a political process by an individual or a large group which normally aims to influence public-policy and resource allocation decisions within political, economic, and social systems and institutions; it may be motivated from moral, ethical or faith principles or simply to protect an asset of interest. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research or poll or the 'filing of friend of the court briefs'. Lobbying (often by lobby groups) is a form of advocacy where a direct approach is made to legislators on an issue which plays a significant role in modern politics.

So we know where to begin.

To give credit where it’s due, within the neuropathy communities, a lot of great work has already been done. The American Neuropathy Association for instance, has been untiringly active in this area since 1995 (although it is only recently that they have embraced HIV-related neuropathy into the fold) but this is a worldwide problem and patients and organisations in every country (if they exist) need to try to raise the awareness of the problems caused by neuropathy locally if possible.

Should we then concentrate on publicizing the plight of chronic pain sufferers, with the idea that chronic pain evokes more sympathy than the neuropathy that causes it? Or should we try to imprint the word ‘neuropathy’ onto every nation’s subconscious, thus prompting the question, ‘What is it?’ on everybody’s lips.

There are many (pretty dull) YouTube clips about neuropathy and websites, blogs and FaceBook pages too; yet the average person on the street still has little clue what it is, or how it makes people’s lives so miserable.

Do we perhaps need role-models? Of course we do but the number of ‘celebrities’ coming forward and declaring their neuropathy can be counted on the fingers of one hand (and statistically, there must be quite a few). You’d think there was a terrible stigma attached and you could maybe understand it if the only form of neuropathy was HIV-related but it’s not; diabetic neuropathy and other forms outnumber us almost everywhere.

So what’s the problem? Are even 20,000,000 Americans, too small a group to catch the eye of the world’s media? According to a Neuropathy Association summit meeting in December, 2010, as many as 8% of the world’s population has neuropathy and others claim that one in five people will get neuropathy before they die. More infohere.

So if these figures are even near to being accurate, neuropathy can hardly be deemed a ‘minority’ illness and therefore undeserving of media attention.

So what can we do?

It’s a dog-eat-dog advertising and publicity world and neuropathy is up against much ‘sexier’ diseases with high-impact media images. Many will say, “Hold on a minute, it’s not a competition. You can’t make an ad campaign out of people’s suffering!” but unfortunately that’s exactly what it is and that’s exactly what we need to do!

It’s important to know precisely what it is we want and just as importantly, to know which targets are realistic and which are a waste of well-meaning energy.

To my mind, the aim must be to try to achieve some of the following:
To raise neuropathy to a level of understanding amongst the general population equivalent to say, ulcers, heart attacks, emphysema and eczema. These are randomly chosen health problems which most people have heard of and have some idea of how they affect people.
To raise neuropathy to a level of understanding amongst the drug companies where they can see potential profits in finding effective treatments and can compete with each other to be the first to be able to ‘repair’ nerve damage, thus increasing their own public profile. We could whistle in the wind and hope that drug companies will see this as a noble cause for the betterment of millions of people but we all know it doesn’t work that way. What’s in it for them is a far better approach.
To stimulate support networks amongst local government, health councils, social services and health groups associated with linked illnesses, so that home doctors and neurologists can immediately refer someone to a support group if necessary. There’s only so much the doctors can do and that can leave the patient feeling distinctly unloved!
To form alliances with other patient groups dealing with neuropathy; especially concerning diabetes, cancer treatment and alcoholism amongst others. Together we are a much more powerful lobbying group.
To aim for awareness of the problem at local authority and right up to national government level. After all, the bottom line is that the money has to come from the top and the competition for national resources in these difficult times is cut-throat. We need allies in the corridors of power.
Lastly, to stimulate understanding within the HIV community itself that there is a large group of people with HIV who have something else nasty to deal with. This could be promoted alongside education about other growing HIV-related problems like Hepatitis, Anal cancer and Dementia.

Achieving any one or all of these aims could transform the face of neuropathy treatment across the world but how do we realistically go about it?

Each person who reads this is an individual who (unless he or she is in government) has a pretty small voice in a democracy and possibly no voice in other political structures. We have to tailor our advocacy to what we can do as individuals. It’s easy to preach that this, that, or the other must be done but that’s much easier said than done, especially if you’re also suffering from neuropathy symptoms yourself. So if you have the energy and will-power to have a go, let’s look at what is possible.

There are various well-established means of attracting attention to your cause: letter writing, phone calls, emails, individual visits, group visits, becoming part of a patient coalition are just a few actions that individuals can take.

The question is, who do you address these appeals to? Sometimes it depends on who you know, or who someone you know knows! However, generally, the individual feels pretty helpless in the face of large bureaucratic organisations. Choosing one means of asking questions maybe the most we can expect from people, Just writing a letter to the local health authority, or ringing a local government official responsible for health, or emailing an organisation, is already a positive step.

Drug companies for instance, need to be taken to task regarding their neuropathy medication policies. Asking them what their position on neuropathy is and what they’re prepared to do to help neuropathy sufferers may not get a reply but you will have sown the seed in someone’s mind that there may be a problem.

Telling your own story or the story of someone you know can also be very powerful. Maybe that can be done by starting a blog, or joining together with others to start a blog. They’re free and very easy to set up. Before you know it, people you never imagined will be reading about neuropathy. Imagine that happening across your country and something really begins to happen!

If you can and are not afraid of the publicity, post a video on YouTube or Vimeo, or one of the other video hosts and go for viral! It has never been easier for individual people to spread information across the world and differences can be made. From little acorns, big oak trees grow!

The most immediate and effective target for our advocacy must be the media and while we have touched on personal blogs, websites and YouTube videos, getting the message onto TV, radio, or in the newspapers and magazines, remains the most effective way of reaching people. It is however, probably the most difficult for the individual to break into. Not that you shouldn’t try; the media is constantly looking for interesting stories and if you can add just a little drama to the story (twenty million Americans with neuropathy for instance!), you may just be asked to present your argument on air, on line or in print.

However, it’s much more likely that larger groups will gain media attention. If you can join, or organise a patient coalition, that will immediately attract attention. Otherwise, asking organisations that deal with problems arising from HIV, or diabetes, or any of the other contributing diseases what information or help they can offer regarding neuropathy, will again alert people to the problem. Option here.

Web communities are also excellent means of creating a ‘bigger voice’. Every forum with neuropathy as its topic has a large following and is full of heart-rending stories but we need to get the message across the whole spectrum of health forums and especially those dealing with HIV.

I’m a dinosaur; I hate Twitter and Facebook, as means of communication but I do realise that I’m in the minority and many people love them and are experts in promoting hot topics. Please, if you have neuropathy, see what you can do. If you can make one person aware, there’s a good chance that they in turn will pass the story on to others.

Advocate to your own ability and do what you can. More info here. Nobody can ask for more but if you remember that you’re representing millions of people across the world, maybe we can remove the ignorance about this growing disease and stimulate action in treating it.

Our disease may not carry a death sentence but for many, it is a life sentence and we owe it to ourselves to make sure we’re not ignored!

To conclude, this is one of those subjects where you can inadvertently, very easily tread on people’s toes. Thousands of hard-working people have years of experience with various forms of advocacy; sometimes achieving great success and sometimes banging their heads against the brick walls of ignorance. To those people I sincerely apologise if this post seems simplistic, naive, or unrealistic.

Wednesday, 8 October 2014

Life With Neuropathy: Personal Video (Vid)

Listen to this Youtube video account - you'll all have been there and struggled just the same in dealing with neuropathy and wondering what the best approach is. Rachelmarye is trying to avoid drugs in favour of as many natural treatments as possible including exercise and diet.

Neuropathy SUCKS :(
rachelmarye Published on 11 Sep 2014


We like to call these videos our homemade reality show. No scripts and no fake celebrities! We are as real as you can get. These are our videos all about how we live our lives as a military couple. We met and married in Hawaii, then moved to Kentucky, and now we live in Georgia! Come hang out with us, kick back, relax and have fun! Don't forget to SUBSCRIBE!

Tuesday, 7 October 2014

Another Suspect Fluoroquinolone Antibiotic May Cause Neuropathy

Today's post from (see link below) is another one in the growing row about fluoroquinolone antibiotics (in this case Avelox) and their potential for causing nerve damage. It's worth bearing in mind that fluoroquinolones are by far the commonest antibiotic prescribed in the USA but nobody can ignore the evidence that shows that they are a danger for people susceptible to nerve damage and even more damaging for those who already have it. Even the FDA has insisted that the industry display clear warnings on the packaging of these drugs and yet doctors still prescribe them widely, either through lack of knowledge or lack of professional attention to detail. The problem is that this class of antibiotics comes under many brand names and people aren't always aware that the tiny print reveals that they are fluoroquinolones (and sometimes not even that). If you have neuropathic problems and/or immune system illnesses, you really need to have a serious discussion with your doctor as to whether these are the right drugs for you, especially as there are enough alternatives available.

Avelox Lawsuit Filed Over Peripheral Neuropathy Risk Written by: Irvin Jackson September 26, 2014

According to claims raised in a recently filed product liability lawsuit against Bayer and Merck, consumers and the medical community were provided inadequate warnings about the link between Avelox and peripheral neuropathy for years, which allegedly left a Tennessee woman with irreversible and permanent nerve damage.

The complaint (PDF) was filed last month by Sherri Kellerman, in the U.S. District Court for the Northern District of California.

Kellerman indicates that she developed peripheral neuropathy from side effects of Avelox (moxifloxacin), which is a popular antibiotic that is part of a class of medications known as fluoroquinolones. Other medications in the same class include the blockbuster antibiotics Levaquin and Cipro.

Fluoroquinolone Antibiotic Failure to Warn

The case joins a growing number of antibiotic peripheral neuropathy lawsuits being pursued nationwide, which all involve similar allegations that makers of fluoroquinolones provided false and misleading information about the risk of permanent nerve damage that may result from use of the medications.

Peripheral neuropathy involves damage to the nerves, which may impair sensation, movement and other aspects of health. Symptoms may include pain, burning, tingling, numbness, weakness and sensitivity to light touches, temperature and motion in the arms and legs.

Until last year, the peripheral neuropathy warnings provided with Avelox suggested that the problems were “rare” and failed to adequately disclose that users may be left with irreversible nerve damage, according to allegations raised by Kellerman.

In August 2013, the FDA required new, more stringent warnings about the peripheral neuropathy risk with Avelox, Levaquin, Cipro and other fluoroquinolone antibiotics, indicating problems may last for months or years after an individual stops taking the drug.

The new label announced by the FDA required the drug makers to warn patients that if they experience symptoms of peripheral neuropathy, they should contact their doctors and be switched to another antibiotic from a different class of drugs.

Avelox Risks Withheld

Fluoroquinolones are among the most widely used antibiotics in the United States, with about 23.1 million patients receiving prescriptions for an oral version of the antibiotics in 2011. Since it was introduced in 1999, Avelox has increased in popularity within the class, approaching blockbuster drug status.

Kellerman alleges that Bayer and Merck knew or should have known about the Avelox peripheral neuropathy risk for years, indicating that studies have linked fluoroquinolones to a risk of permanent nerve damage for years before the medication was even introduced.

A study published last month in the medical journal Neuorology suggested that users of oral fluoroquinolones may face double the risk of developing peripheral neuropathy. Researchers found that current users of Avelox and other similar antibiotics faced an 83% increased risk of suffering nerve damage, and new users faced more than double the risk of peripheral neuropathy compared to those not taking the drugs.

“Defendants failed to appropriately and adequately inform and warn Plaintiff and Plaintiff’s prescribing physicians of the serious and dangerous risks associated with the use of Avelox concerning peripheral neuropathy, as well as other severe and personal injuries, which are permanent and/or long-lasting in nature, cause significant physical pain and mental anguish, diminished enjoyment of life, and the need for medical treatment, monitoring and/or medications,” according to Kellerman’s complaint.

The Avelox lawsuit pursues claims for strict liability, failure to warn, negligence, breach of warranty, fraud, negligent misrepresentation and fraudulent concealment. It comes amid a growing number of similar Levaquin lawsuits and Cipro lawsuits being pursued on behalf of former users of those related antibiotics, which have also been linked to a risk of peripheral neuropathy.

Related Stories
Psychiatric Warning Should Join Antibiotic Peripheral Neuropathy Warnings, According to FDA Citizen Petition (9/22/2014)
Levaquin Peripheral Neuropathy Lawsuit Filed Against Johnson & Johnson (9/3/2014)
Study Links Side Effects of Levaquin, Cipro to Nerve Damage Risk (8/25/2014)
Cipro Nerve Side Effects May Be Cause of Gulf War Illnesses: Report (11/6/2013)
FDA Warns About Risk of Nerve Damage from Levaquin, Cipro, Avelox (8/16/2013)