Sunday, 24 May 2015

How Effective Is Carbamazepine For Neuropathy Pain?

Today's post from (see link below) is an objective assessment of the effects of carbamazepine on neuropathic pain and as such is always useful for neuropathy patients looking for confirmation that what they're being prescribed is what the doctor says it is. Carbamazepine has become increasingly popular recently, as an alternative to other anti-epilepsy drugs such as Lyrica, which has a possibly deserved bad press. However, does the research show that it works? This article suggests that it does...for some people but with caveats. Pretty much the same as all other drugs used to treat neuropathic pain then! Worth a read if you're on Carbamazepine, or likely to encounter it in the course of your treatment options.

Carbamazepine for chronic neuropathic pain and fibromyalgia in adults 
Philip J Wiffen1,*, Sheena Derry1, R Andrew Moore1,Eija A Kalso2,3
Editorial Group: Cochrane Pain, Palliative and Supportive Care Group
Published Online: 10 APR 2014
Assessed as up-to-date: 7 FEB 2014

DOI: 10.1002/14651858.CD005451.pub3

Copyright © 2014 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
The Cochrane Library
Read a clinical summary of this review on



This is an update of a Cochrane review entitled 'Carbamazepine for acute and chronic pain in adults' published in Issue 1, 2011. Some antiepileptic medicines have a place in the treatment of neuropathic pain (pain due to nerve damage). This updated review considers the treatment of chronic neuropathic pain and fibromyalgia only, and adds no new studies. The update uses higher standards of evidence than the earlier review, which results in the exclusion of five studies that were previously included.


To assess the analgesic efficacy of carbamazepine in the treatment of chronic neuropathic pain and fibromyalgia, and to evaluate adverse events reported in the studies.

Search methods

We searched for relevant studies in MEDLINE, EMBASE and CENTRAL up to February 2014. Additional studies were sought from clinical trials databases, and the reference list of retrieved articles and reviews.

Selection criteria

Randomised, double blind, active or placebo controlled trials (RCTs) investigating the use of carbamazepine (any dose, by any route, and for at least two weeks' duration) for the treatment of chronic neuropathic pain or fibromyalgia, with at least 10 participants per treatment group. Participants were adults aged 18 and over.

Data collection and analysis

Two study authors independently extracted data on efficacy, adverse events, and withdrawals, and examined issues of study quality. Numbers needed to treat for an additional beneficial effect (NNT) or harmful effect (NNH) with 95% confidence intervals (CIs) were calculated from dichotomous data.

We performed analysis using three tiers of evidence. First tier evidence 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, at least 8 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 that was considered very likely to be biased or used outcomes of limited clinical utility, or both.

Main results

Ten included studies (11 publications) enrolled 480 participants with trigeminal neuralgia, diabetic neuropathy, and post stroke pain. Nine studies used a cross-over design, and one a parallel group design. Most of the studies were of short duration, lasting four weeks or less.

No study provided first or second tier evidence for an efficacy outcome. Using third tier evidence, carbamazepine generally provided better pain relief than placebo in the three conditions studied, with some indication of pain improvement over mainly the short term, but with poorly defined outcomes, incomplete reporting, and in small numbers of participants. There were too few data in studies comparing carbamazepine with active comparators to draw any conclusions.

In four studies 65% (113/173) of participants experienced at least one adverse event with carbamazepine, and 27% (47/173) with placebo; for every five participants treated, two experienced an adverse event who would not have done so with placebo. In eight studies 3% (8/268) of participants withdrew due to adverse events with carbamazepine, and none (0/255) with placebo. Serious adverse events were not reported consistently; rashes were associated with carbamazepine. Four deaths occurred in patients on carbamazepine, with no obvious drug association.

Authors' conclusions

Carbamazepine is probably effective in some people with chronic neuropathic pain, but with caveats. No trial was longer than four weeks, had good reporting quality, nor used outcomes equivalent to substantial clinical benefit. In these circumstances, caution is needed in interpretation, and meaningful comparison with other interventions is not possible.

Plain language summary

Carbamazepine for chronic neuropathic pain and fibromyalgia 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, or cut, or arthritic knee). Neuropathic pain is treated by different medicines than pain from damaged tissue. Medicines like paracetamol or ibuprofen are not effective in neuropathic pain, while medicines that are sometimes used to treat depression or epilepsy can be very effective in some people. Our understanding of fibromyalgia (a condition of persistent, widespread pain and tenderness, sleep problems, and fatigue) is lacking, but fibromyalgia can respond to the same medicines as neuropathic pain.

Carbamazepine was developed to treat epilepsy, but it is now used to treat various forms of chronic pain. We performed searches (up to February 2014) to look for clinical trials where carbamazepine was used to treat neuropathic pain or fibromyalgia. We found 10 studies involving 418 people involved in testing carbamazepine. Studies were not generally of very good quality. Most were very small, as well as of short duration. Studies lasting only one or two weeks are unhelpful when pain can last for years.

There was not enough good quality evidence to say how well carbamazepine worked in any neuropathic pain condition. Pooling four small studies showed that it was better than placebo, but the result cannot be relied upon. There was not enough information from these studies to make any reliable comment on adverse events or harm.

Carbamazepine is probably helpful for some people with chronic neuropathic pain. It is not possible to know beforehand who will benefit and who will not.

Saturday, 23 May 2015

Still Waiting For Firm Evidence That Marijuana Helps Pain

Today's post from (see link below) throws a cautionary note into the arguments concerning marijuana as an analgesic. As the article points out, much of the evidence showing the benefits of cannabinoids for pain patients is anecdotal and asks for more studies to provide much more hard evidence. It certainly seems that marijuana can be extremely helpful to patients with chronic nerve pain; everything points that way and there are thousands of examples of satisfied patients struggling against outdated lawgivers etc etc but it is true that we need as much hard evidence as possible to remove all shadow of doubt and in our current systems, that can only come from extensive studies and research by recognised medical bodies. The only way that we can prevent people from being criminalised for treating their pain, is providing irrefutable evidence, so let's get on with gathering that evidence as quickly as possible.

Strong Evidence Still Lacking on Medical Marijuana for Pain
Some Case Studies Show Efficacy, More Scientific Studies Needed

Released: 15-May-2015

Source Newsroom: American Pain Society more news from this source
Contact Information Available for logged-in reporters only
Citations American Pain Society Annual Scientific Meeting

PNewswise — ALM SPRINGS, May 15, 2015 – With increasing numbers of chronic pain patients experimenting with marijuana to get relief, physicians need to learn more about the plant and its constituents to counsel patients appropriately about its safety and possible analgesic benefits, according to a leading medical marijuana researcher speaking today in a plenary session at the American Pain Society Annual Scientific Meeting,

Mark Ware, M.D., executive director, Canadian Consortium for the Investigation of Cannabinoids and director of clinical research, Alan Edwards Pain Management Unit, McGill University Health Center, moved to Canada in 1999 following a court decision that legalized marijuana there. He had been working in Jamaica at a sickle-cell anemia clinic, where he encountered several patients who told him that using marijuana eased their pain. At McGill University, Ware evaluates claims from patients about the medical benefits of marijuana and is involved in research on the long-term safety of the plant in patients using it for chronic conditions.

“Much of what we know about medical marijuana is anecdotal, so the challenge is to recognize that patients who say they get pain relief by self medicating with marijuana may be right, and move forward in conducting more scientific studies to better understand its analgesic benefits and overall safety,” said Ware.

The New York Times has reported that worldwide some 15 trials of medical cannabinoids have been conducted. Results have shown effectiveness in reducing pain from neuropathy, diabetes and fibromyalgia.

The FDA has approved two cannabinoid medications, dronabinal and nabilone. They are prescribed for controlling nausea and vomiting caused by chemotherapy and to treat anorexia in HIV patients. Other cannabinoid-based medications are under FDA review for treating cancer pain and other conditions.

Ware said several challenges lie ahead for conducting marijuana pain studies. “With legalization of medical marijuana in more than 20 states, widespread access will yield more reports that need to be evaluated,” said Ware. “And, while it’s clear that large, Phase 3 clinical trials are needed to better understand medical marijuana’s potential clinical efficacy, who will pay for them and is it necessary to conduct trials for every pain condition that could be treated with marijuana?”

Another obstacle for medical marijuana research, according to Ware, is lack of standardized products. “Plants grown in Colorado and other legalization states could be different, so when talking about cannabis in various states, there could be a variety of compounds,” he said. According to the National Institute on Drug Abuse, most marijuana used as medicine is the same quality and carries the same health risks as marijuana sold on the street.

New studies also are needed to explore safety problems. “There are safety concerns about the molecule itself, and studies of recreational marijuana users show the drug can affect the brain and lungs. Questions also arise about smoking as a safe route of administration vs. oral dosing,” Ware stated.

In states where medical marijuana is legal, physicians have discretion in advising patients about using it for pain management. “Doctors are being asked every day if using marijuana can lessen pain intensity,” said Ware. “Even though there are no efficacy and safety data from large controlled clinical trials, doctors interested in medical marijuana should learn about the plant itself and its myriad active ingredients by reviewing the scientific literature, understanding local legal issues and potential liability, and weighing the risks and benefits vs. other analgesics, including opioids.”

About the American Pain Society

Based in Chicago, the American Pain Society (APS) is a multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering. APS is the professional home for investigators involved in all aspects of pain research including basic, translational, clinical and health services research to obtain the support and inspiration they need to flourish professionally. APS strongly advocates expansion of high quality pain research to help advance science to achieve effective and responsible pain relief. For more information on APS, visit

Friday, 22 May 2015

Foot Neuropathy: A Doctor's Response

Today's post from (see link below) is the initial conversation you would want to have with your doctor, if you turned up at the surgery with neuropathic symptoms. Unfortunately not all doctors are as clear as this during their consultation and many patients leave feeling confused and frustrated that they're not being told what's going on with their nerves. Communication is key with neuropathy. You need to get an umbrella view first and with that information in hand, move on gradually onto the treatment ladder. If you know of someone who is at their wits end as to what their problem is, show them this doctor's response - it's by no means comprehensive but at the beginning it doesn't need to be. At least the patient will have a good idea of what he or she is dealing with.

Foot Neuropathy Isn't 'Major' Problem, but It Sure Can Hurt - Ask Doctor K by Anthony Komaroff Apr 17, 2015

DEAR DOCTOR K: I have neuropathy pain in my feet. What can I do to relieve it?

DEAR READER: Neuropathy, or nerve damage, is a remarkably common problem. I get asked lots of questions about it -- both from readers of this column and from readers of the Harvard Health Letter, which I edit. It isn't considered a "major" health problem by many doctors, because it isn't potentially fatal. But, like many other problems not labeled as major by doctors, it sure can make people miserable and interfere with their lives.

Fortunately, there are several treatments that bring relief to most people who suffer with this condition. There are different types of neuropathy, but I'll assume you have the most common type, called axonal neuropathy.

Neuropathy affects many of the nerves in your body. Each nerve is like a highway that connects your brain to the rest of your body. Signals from your brain travel down the nerves sending orders, such as the order for your muscles to move different parts of your body. Signals from your body travel up the nerves to your brain. When your fingers touch something, for example, signals from your fingers tell the brain how cold and how hard that thing is, and whether touching it causes pain.

The longer a nerve is, the more likely it is to be affected by neuropathy. The nerves connecting your brain to your legs and feet are the longest, so the symptoms of neuropathy almost always begin in and are worst in the feet.

The most common symptoms of neuropathy are numbness, burning, or unpleasant sensations that people have a hard time describing. The loss of sensation in the feet can cause problems with balance when walking. If you can't tell where your weight is being carried (is it on your heels or the balls of your feet?), your brain gets confused.

Among the most common causes of neuropathy are diabetes, alcohol abuse, an underactive thyroid gland and some types of cancer chemotherapy. However, about one out of every four people with neuropathy has none of these known causes.

If you have any of the known causes of neuropathy, the first thing to do is treat the cause. If you're diabetic, do everything you can to lower your blood sugar. If you drink too much, cut down. If you have an underactive thyroid, take your thyroid pills as directed and get regular thyroid blood tests.

The most widely used medicines for reducing symptoms are an anticonvulsant -- either gabapentin (Neurontin) or pregabalin (Lyrica) -- and tricyclic drugs, including desipramine. Other anticonvulsants and drugs that decrease the number and severity of muscle spasms also can be helpful, including phenytoin, carbamazepine, topiramate and baclofen.

Not all of these drugs help for everyone. But if you work closely with your doctor, the odds are good that you can find one that will give you considerable relief.

Thursday, 21 May 2015

The Major Challenges Of Neuropathy Diagnosis

Today's post from (see link below) bemoans the lack of focus when it comes to neuropathy diagnoses. Patients are still far too often sent home with a vague assumption that they have neuropathy and are left frustrated by the 'learn to live with it and in the meantime take these drugs' approach. Similarly, diagnoses are often plain wrong because doctors won't go beyond the standard and generally less than accurate, testing procedures that have been around for decades. This article calls for a more rigorous approach to testing and better ways of informing the patient both about the disease and the options regarding treatment. This blog supports this view completely: neuropathy patients have been passive for far too long and have a right to a thorough analysis of their condition; no 'ifs' no 'buts' just honesty and the feeling that the specialist has done his or her best to get to the bottom of the problem and has the patient's best interests at heart.

Peripheral Neuropathy – The Challenge  Author: Dr. Martin Rutherford, DC, CFMP
Peripheral Neuropathy (P.N.) – burning, cramping, numbness, tingling, sharp pains in the feet and sometimes hands is becoming extremely common. A high percentage of cases can be reversed without surgery or medications. So it is still difficult to fathom the gauntlet a patient suffering from this condition must confront in an attempt to obtain a correct diagnosis or successful treatment.

The medical literature contains abundance of peer reviewed studies cataloging the multitude of causes that create the above symptoms and awareness of the literature should result in a diagnosis of P.N. and its known cause. Indeed, the Contemporary Neurology Series- essentially the medical bible on such matters, in its peripheral neuropathy in chemical practice volume – which is distributed free to most neurologists and neurosurgeons – lists as many as 80 possible causes.

Yet today the P.N. patient is still told “maybe you have P.N.” Tests for diabetes, spinal cord problems, or nerve entrapment in the ankle may or may not be run. If tests are run and are positive for one of these causes medical intervention into the diabetes or surgical intervention for the spinal cord or ankle problems may be performed. If these procedures are not effective (and this list includes post chemo peripheral neuropathy) the patient is regularly told its idiopathic (has no known cause) and you can take these medications for the rest of your life or you just have to live with it, or both. Huh??

Let’s look at a recent case that entered our practice that is representative of the challenges faced by the average P.N. patient. 70 year old Caucasian male comes in with numb toes that he has been unable to move easily since 1998. He went to his PCP who sent him to a neurologist who told him “his nerve endings were dying.” No diagnosis was rendered. The patient researched the symptoms on his own and came to a self diagnosis of Peripheral Neuropathy. For the record, his diagnosis was correct. He developed further symptoms but his primary symptom was still numbness. His legs also felt like “big lumps”, and he currently feels like he is “walking on rocks”, which he described as being uncomfortable. This description of pain alone suggests three probable, separate, but simultaneous causes of his foot symptoms – all of which by the way are listed in the above mentioned medical neurology textbook series.

He does not have diabetes but was started on Lipitor about the same time some of the symptoms started as he has “always had high cholesterol”. He has had his gallbladder removed and has several thyroid symptoms. He has chronic stomach problems which removing his gallbladder did not resolve. He also has restless leg syndrome (RLS). This was expressed as numbness, tingling, and pain and needles in his legs that made him need to move them at night so he could sleep. All of this history is significant.

After a complete neurological and general systems history and examination was completed here’s what was found; His examination was suggestive of what is termed a distal symmetric polyneuropathy involving loss of all of the five different types of nerve endings in his feet. This cannot occur due to only one cause. The exam concluded that the spine, ankles, diabetes and/or chemotherapy were not among the causes for his P.N. It was ultimately found that the statin exposure (the Lipitor) was causing the “Restless leg” symptoms and he was referred back to his MD for this matter. Additionally, he also was found to have a gluten intolerance which can cause gluten related peripheral neuropathy and balance conditions about 8-11% of the time. This gluten intolerance by the way was also the cause of his “stomach” problems and unnecessary gallbladder removal. Two of the many causes of “distal symmetric polyneuropathy” (one of many types of neuropathy listed in the literature) are autoimmune diseases and thyroid conditions. This patient tested positive for two autoimmune diseases – Hashimotos – an autoimmune attack on his thyroid – and Celiac- an autoimmune attack triggered by gluten on his small intestines (remember the stomach problem?). He also had multiple additional food allergies, all of which were affecting his immune system which was in turn attacking and damaging his “nerve endings” and “causing them to die”. Many other causes- as per the medical model’s own literature- were ruled out with fairly minimal and cost effective blood salivary and urinary testing.

Management of the above findings has resulted in a cessation of the patients declining symptoms and a symptomatic reversal of 50-70% of the symptoms to date. The patient is about 2/3 of the way through treatment and further progress is expected.

This case is classic in its representation of the challenges the Peripheral Neuropathy patient faces in obtaining a specific diagnosis of the cause of his P.N. in the medical model. Or in this case, the challenges of obtaining a diagnosis of the multiple causes of his symptoms and/or condition, and obtaining a specific non- drug, non surgical solution to their problem.

The lesson? If you’re told your P.N. is caused by diabetes, spinal, ankle conditions, or chemo and you haven’t responded to treatment for those diagnosis and you have been relegated to live with it, or with a lifetime drug regimen – find a certified Functional Medicine Doctor or a Board Certified Chiropractic Neurologist, or both in your area and get a full evaluation before giving up.

Herskovitz, Steven, Stephen Scelsa, and Herbet Schaumburg. Peripheral Neuropathies in Clinical Practice. Pages 31-38 Oxford University Press. 2010 New York, New York

Author: Dr. Martin Rutherford, DC, CFMP Dr. Martin Rutherford, DC, CFMP is a Certified Functional Medicine Practitioner and clinic director of Power Health in Reno, NV and author of the book Power Health - Back to Basics". For more information on Dr. Rutherford and his clinic visit

Wednesday, 20 May 2015

Motor Neuropathy: What's That?

Today's short post from (see link below) may clear up some confusion among neuropathy patients, who hear various labels attached to their condition but aren't sure what they mean, or how they're different to other forms of neuropathy. In this case, if 'motor neuropathy' is your diagnosis then you may learn something by reading the definition described below. However, a diagnosis of motor neuropathy is just a beginning and you may need to press your doctor for much more information as your treatment begins and do your own research. You may also find that the term 'motor neuropathy' can also be called something else but bear in mind that motor neuropathy is different to sensory neuropathy, even if the symptoms are very similar. It's confusing and that's why information pieces like this one are useful.

Motor Neuropathy 
Motor neuropathy can most likely affect the hands, feet, legs and arms

Motor neuropathy occurs if the motor nerves which control muscle movements become damaged.

As with sensory neuropathy, the parts of the body most likely to be affected are the feet, hands, legs and arms.

Motor neuropathy can affect our body's ability to co-ordinate movements, particularly with regard to walking which can lead to a form of foot deformity known as Charcot foot

Symptoms of motor neuropathy

The symptoms of motor neuropathy may include:
Muscle weakness
Loss of control of co-ordination
Muscle twitching
Muscle paralysis
Complications of motor neuropathy

Weakness in the muscles of the foot and loss of co-ordination can lead to unbalanced pressure being exerted on the ankle when we walk.

People with neuropathy may not notice that they are walking differently as neuropathy often results in diminished sensitivity to pain.

If unbalanced pressure is exerted over a period of time it can lead to sprains, which can go unnoticed in people with neuropathy.

If further pressure is applied to the foot, through continued walking, this can lead to further bone dislocation and fractures, resulting in a deformation of the foot known as Charcot foot.

Tuesday, 19 May 2015

Celiac Disease Versus Neuropathy

Today's post from (see link below) is a call for both celiac (gluten intolerant) and neuropathy patients to be screened for either or both diseases. This comes from the recent findings suggesting links between the two and is a bit of a hot topic on the neuropathy airwaves at the moment. The article does cast some doubt as to the true implications of the recent findings and the statistics do seem to suggest a fairly low incidence of cross-over diseases but so many people are claiming the benefits of gluten free diets for neuropathy patients that this sort of article is necessary to maintain balance in the argument.

Celiac Tied to Neuropathy Risk
Rates of nerve problems more than doubled in celiac patients.
by Kristina Fiore Staff Writer, MedPage Today 05.11.2015 

Action Points

Patients with celiac disease are at increased risk for various types of neuropathy, with no gender difference.
Patients with neuropathy are also at increased risk of future celiac disease diagnosis. 

Patients with celiac disease may be at increased risk of neuropathy, Swedish researchers found.

In a large population-based, case-control study, patients who had biopsy-confirmed celiac disease were 2.5 times more likely to be diagnosed with neuropathy, Jonas Ludvigsson, MD, PhD, of the Karolinska Institute, in Stockholm, and colleagues reported online in JAMA Neurology.

"Given the autoimmune nature of celiac disease, our data reinforce the potential role of immunologic mechanisms for the development of neuropathy," they wrote.

Celiac disease is an immune-mediated enteropathy that occurs in genetically susceptible patients as a result of sensitivity to gluten. Its estimated prevalence is 1% in the general population.

Extra-intestinal neurology manifestations of celiac have been described in the literature, but there are few prevalence estimates of celiac-associated neuropathy, the researchers said.

To determine that prevalence, as well as the relative and absolute risks of developing neuropathy in celiac disease patients, Ludvigsson and colleagues looked at data from 28,232 patients who had their celiac disease confirmed by a biopsy and compared them with 139,473 matched controls.

They found that the absolute risk of neuropathy was 64 per 100,000 person-years in celiac patients within 1 year of celiac disease diagnosis, compared with 15 per 100,000 person-years for the general population.
That corresponded with hazard ratio of 2.5 for later neuropathy diagnosis (95% CI 2.1-3.0, P less than 0.001). Risk remained similar when the analysis was controlled for a multitude of factors, including educational level, socioeconomic status, country of birth, type 1 and type 2 diabetes, autoimmune thyroid disease, rheumatologic diseases, pernicious anemia, vitamin deficiencies, and alcoholic disorders, the researchers wrote.

Risk estimates for neuropathy were highest in the first year after celiac diagnosis (HR 4.4, 95% CI 2.67-7.4, P less than 0.001), but there was still a significantly increased risk of neuropathy after the first year of follow-up, they reported.
There were no gender differences in neuropathy risk in celiac patients, they added.
Ludgivsson and colleagues also examined subtypes of neuropathy and found an increased risk of the following types:

Chronic inflammatory demyelinating neuropathy (HR 2.8, 95% CI 1.6-5.1, P=0.001)
Autonomic neuropathy (HR 4.2, 95% CI 1.4-12.3, P=0.009)
Mononeuritis multiplex (HR 7.6, 95% CI 1.8-32.4, P=0.006)

However, there was no association between celiac disease and acute inflammatory demyelinating polyneuropathy, they reported.

Ludvigsson and colleagues acknowledged that part of the increased risk of neuropathy may be due to surveillance bias, as physicians may be more likely to investigate patients with celiac for neuropathy. But they noted that the consistent excess risk of neuropathy, which lasted beyond 5 years after a diagnosis of celiac, makes that less likely.

They concluded that the data "may also suggest that the two diseases may share risk factors or a common underlying etiology for the development of neuropathy, such as a potential role of immunologic mechanisms. The association between celiac and different types of neuropathy suggests that there may be specific underlying mechanisms that may lead to the predominance of one type of neuropathy compared with others."

Based on their findings, they recommend that patients with neuropathy be screened for celiac disease.

"Although absolute risks for neuropathy are low, celiac is a potentially treatable condition with a young age of onset," they wrote. "Our findings suggest that screening could be beneficial in patients with neuropathy."

Monday, 18 May 2015

Coping With Chronic Pain Symptoms, Family And Friends

Today's valuable post from (see link below) follows on from yesterday's article about learning to cope with the pressures of chronic pain and discomfort. This applies to neuropathy patients too - don't underestimate your condition! The article comes from a different angle to that of yesterday and is equally lengthy but is equally useful in that you can choose from the pieces of advice given, according to your own situation.

How to Cope When Chronic Pain Affects Friends, Family and Social Life
March 14, 2015 by Princess 

When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.

In the recent pain support survey that so many of you kindly did (*enormous thank you* ~ you can still find the survey here), many report that one of the greatest obstacles is not with our bodies but in relations with those closest to us. Our friendships and connections with family can make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Dealing with this on top of the symptoms can naturally be devastating for pain patients. Yet the lessons of living in pain run deep, and even the darkest times can be illuminated by the slenderest light. This post focuses on the effect of pain on our relations with others and offers a few tips on how to cope.

Changing Relationships

“Chronic illness throws a monkey wrench into our relationships,” says Susan Milstrey Wells, author of A Delicate Balance: Living Successfully With Chronic Illness. “We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to be the mum who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch.”

“In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.”

We want to be treated as the same person we have always been. #chronicillness

Chronic Pain and Socialising

Planning a social life around chronic pain and illness is hugely frustrating for everyone involved and – for those who are not in it for the long haul – can be swift to dissolve friendships. If you’ve ever known someone who keeps on saying that they want to catch up but never commits, or a friend who is constantly cancelling on you at the last minute, you know how frustrating that flakiness is.

Yet in our ever-erratic, unpredictable illness, our chronic pain can make us mimic that flaky friend to perfection. “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhard.

“This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.”

Planning a social life around #chronicpain is frustrating for everyone involved.

Never Knowing How We’ll Feel

The ongoing uncertainty about how we’ll feel each day makes planning impossible. “It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment,” says Toni Bernhard.

“In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It’s an ongoing challenge, that’s for sure.” Some pain patients also feel that others expect too much from them, so believe they are letting them down in some way if they can’t keep up, which leads to more unhelpful thoughts.

Cancelling at the Last Minute

Just as others are perplexed by the fluctuation in symptoms, especially the speed with which a flare can transform us from being happy and engaged with someone, to collapsing in a voiceless heap, we too are equally perplexed. We can do everything within our power and planning to see our loved-ones but there are times when it simply does not help, or the pain flares so viciously, we are entirely powerless in controlling it.

Only you know which decisions to make to best manage your symptoms. If you are unable to do something or have to change plans you’ve made with friends, it’s important to communicate this but don’t feel obligated to give long explanations or grand apologies, though I know that is natural. We obviously feel bad, sad, and upset but the subsequent guilt at letting another down will only serve to depress you. 

One Event = Whole Day’s Preparation

A single event, such as seeing a loved-one means our entire day is built around that event. From waking-up, everything is considered and for many of us, we cannot do anything we want to before the event as it jeopardises it. So when we do have to cancel, it’s not just the event but an entire day wasted, us in pain, yet we were never able to even see that friend. This is frequently ignored, especially by those who get annoyed at us for being in pain and needing to cancel.

It’s complicated as we long to socialise, to see those we love but the depth of understanding needed to truly comprehend the constant evaluation, uncertainty and ongoing management of our pain, is only grasped by a select few. These friends are perhaps the finest of all as they do not get angry or feel put out if we must cancel at the eleventh hour, nor do they mind it if our plans are cut short because they understand that we are doing everything we can. It just doesn’t always go to plan.

Seeing a loved-one means the entire day is built around that event. #chronicpain

Evaluating Everything

When you look perfectly healthy but cannot participate in activities such as a short walk with friends or a party, explaining why is often difficult and always tiring. We naturally become exhausted explaining over and over why we cannot partake.

It also breaks our hearts when we keep having to explain that we’re not able to do something that we would truly love to, even if it was ‘just’ a walk with friends or a drive in the countryside. Though of course there is no ‘just’ about it when for the most part, you are stuck indoors because of your pain and illness.

Living with chronic pain and illness involves a constant evaluation of the impact that various activities might have on our pain, fatigue, and other symptoms. This painstaking (pardon the terrible pun), and meticulous pacing often requires difficult choices about whether or not to engage in an activity that others do without a second thought.

Living in #chronicpain involves a constant evaluation of the impact activities have on the pain.

Not Knowing How to Act Around Pain

“We may lose friends because we can no longer share a sport or hobby with them, or because we don’t seem to be as much fun as we used to be,” says Susan Milstrey Wells. “Sometimes our friends just don’t know how to act around us when we are ill.”

Being so misunderstood by loved ones and losing the intimacy once shared in formally close friendships naturally hurts. Human beings are social creatures. Our sense of who we are and our place in the world is forever influenced and redefined by the nature and quality of our interactions and relations with others. Yet chronic illness inevitably changes relationships. 

Sensory Overwhelm and Brain Fog

Another aspect of socialising with pain that becomes difficult, even impossible is trying to interact when the pain rises because of sensory overload and makes it impossible to think. The more people in the room the greater the stimulus on your nervous system, and consequently, your pain.

While you are trying to listen, engage, think of your responses too, any additional noise, people, and especially music can make brain fog and sensory overload exacerbate, making it painful physically and emotionally. The desire to have and maintain closeness in friendship and family is sadly made all the more impossible because of the very symptoms that thwart it.

Many pain patients, especially those with severe pain conditions that mostly leave them house-bound, naturally struggle to see, speak to, or socialise anything close to what we long to. Though it’s humble compensation, when we do connect, it does make it all the more wonderful, Skype too, is a beautiful means for those with pain to see their friends and chat.

Being Treated Differently

When you have an illness that is so hard for others to understand, others may treat you differently. Even those who fully support us can change in how they relate to us. We want to be treated as whole people, and adults, not ’the one with pain’ but may be treated like shadows of our former self, exclusively defined by our pain or illness, or worse as dependant children.

“I’ve had people talk to me as if I’m a child. There’s a word for this frustrating phenomenon: infantilization. The unpredictability of how we’ll be treated by others can be extremely stressful,” says Toni Bernhard. “Will they understand that chronic illness hasn’t turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if we’re contagious?”

Toni offers two strategies for handling this particular uncertainty: “First, I reflect on how even well-intentioned people may behave unskillfully for reasons related to their particular life history and their cultural conditioning. This helps me not to take their behavior personally. Second, I remind myself that, despite this illness, I know in my heart that I’m a whole and complete person; then I re-commit to making sure that’s good enough for me.” 

Talking About Our Pain

If we talk about our health problems, loved-ones may respond judgmentally yet in keeping quiet about our health issues, or the severity of the pain and symptoms, perhaps even acting ‘healthy’, we risk leading others to misunderstand what we can and cannot do. Additionally, by keeping quiet, we’re also passing up the possibility of receiving much-needed support, emotional and practical.

“How much you talk about your pain and other difficulties is a personal matter, affected by your personality, the situation, your culture, and the personalities and cultures of others in your life,” says Lynette Menefee Puiol, Ph.D. “For example, some friends might think it is not polite to ask how you are doing, while others think that not asking indicates that they don’t care.”

“There is a delicate balance between sharing enough so people will understand, and knowing that talking about your pain has a negative effect on relationships,” adds Lynette, who suggests having a ‘script’ prepared when you don’t want to say much, such as, “I don’t like to discuss the details, but thanks for your concern.” Instead of talking, some pain patients use a sign or a number system to communicate when pain flares-up or it is particularly difficult to speak. 

Exceeding Limitations

The nature of invisible illness and our fluctuating symptoms can lead to an equally fluctuating level of support. Since others cannot see our pain, sometimes even those closest to us find it hard to believe that someone who looks healthy can have so many severe symptoms and limitations. We may be misunderstood or expected to exceed our limits by even those we love the most, no matter how much we explain that we cannot.

This of course is hurtful emotionally as well as physically if we do go over those limits. Yet sometimes even those we think understand show they do not. We might try to ‘keep up’ only to pay for it so dearly later but of course the flare-ups and recoveries are as hidden as our pain is. So that side of living in pain is also so vastly misunderstood, which can also affect friendships and relations with family. 

Unpredictable Symptoms

Everyone with painful neurological conditions and invisible illness knows how tricky it is to manage our unpredictable symptoms and limitations but just as we struggle with it, our friends and family may think we are exaggerating our pain or mismanaging it, which may strain in turn friendships and relations with family.

Loved-ones who see us ‘able’ to carry out activities, though obviously oblivious to how painful these actually are, are then confused by our need to rest and recover, or allow that invisible pain to lessen. Oblivious to the pain involved, aftermath, or inability to repeat that activity, this creates doubt and may lead to their questioning of our pain, in turn affecting the closeness and connection in our relationships and friendships.

The swift climb from ‘normal’ pain to being entirely unable to speak because of a flare can also be perplexing to others. Of course not everyone reacts in this way. Some friendships are deepened through our illness and pain but if we are judged on something that is so out of our own control, it naturally makes us feel even more isolated, especially as the reality is so beyond the scope of our loved-ones’ own experience and therefore understanding.

Changing Needs, Changing Relationships

The world of the chronic pain patient, no matter the cause, shares the need to be understood. We don’t want pity but understanding. Not sympathy but empathy. When friends and family change how they respond to us it can make life with pain even more difficult. Even if initially our loved-ones respond with kindness and concern, that may change as time passes and we don’t ‘get better’.

Another way our relationships change is that we may rely on others in new ways, something that can be difficult to acknowledge even to ourselves, let alone in communicating those needs to others. We may feel embarrassed, flawed, or inadequate because of the pain. It’s natural to worry that others may be resentful of our needs because of disability and pain but that frequently leads to those needs not being met.

We don’t want pity but understanding. #chronicpain #chronicillness

Compassion Fatigue

Sometimes our friends and family are there for us only to slacken that support when things don’t improve. They may become frustrated in their role if they are a caregiver or a family member, or simply misdirect their own feelings about your illness at you, which is always hard. Your friend you went out every week with is fed-up of waiting, or your family stops asking how you are.

When even those you thought supported you get compassion-fatigue, or grow a little clipped or angry at you ‘never getting better’, take comfort in your own inner strength and remember that new people do come into your life, online and in person, especially now with so many online support groups.

Distance from Illness and Pain

Watching a loved one struggle with pain often makes others feel helpless and uncomfortable. They may also be experiencing fear, disappointment and loss. These emotions can be powerful motivators. It hurts for us, of course it does, but denial can be their own means for coping, how ever hurtful that is to us. They may simply feel too uncomfortable to acknowledge our pain and ill-health.

Some reactions are also often complicated by feelings of guilt for being healthy and able to walk, run, get out, or simply unable to share aspects of their lives that they know you can now no longer be a part of. Remember that others have their own challenges and lives to lead, that everyone has their own battles to face but above all, keep in mind that others’ reactions usually have far more to do with them than with us.

Keep in mind that others’ reactions usually have far more to do with them than with us.

Letting Go

I used to have a friend who was one of the kindest you could hope to meet. Yet when CRPS began, although the initial reaction was one of concern and compassion, the distance was evident. That grew to increasingly infrequent visits, until it became all too apparent that the pain made them too uncomfortable (as ironic as that sounds to us in pain). Their need to create distance was as they could not deal with it, and many people cannot. Illness, as perpetuated by our youth and health-adoring society, doesn’t sit well for many.

While some relationships are deepened by the challenges of chronic illness, we may need to accept that we must let others go. Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. Of course it hurts if someone you love leaves but for your sake, letting go is often the most healing action you can take. Just as our lives shift and evolve, we too change and grow, so do the people we share it with. Instead of focusing on the heartbreak of losing loved-ones to your chronic pain and mystifying illness, let go, have compassion for yourself, them too in letting go, and know that new friends do appear. 


“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance,” says Susan Milstrey Wells. “We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

Self-compassion attains a whole new height when it comes to living with chronic pain and illness. We are so frequently hardest on ourselves, and when we lose those we love, all the harder. Sometimes that loss, that separation from friends we considered for life can lead us to this dark and lonely place.

“If your #compassion does not include yourself, it is incomplete.” Jack Kornfield #chronicpain

Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself, without judgement, without criticism, without drama. Having self-compassion means to fully be with yourself in awareness, much like a good friend, with the willingness to be a loving companion to your own pain.

Self-compassion also brings care and concern for ourselves; warmth, love, and kindness for our challenges too. It’s a gentleness within you that permeates with acceptance, unconditional love and intimate understanding. As author and Eastern teacher, Jack cornfield said, “If your compassion does not include yourself, it is incomplete.” 

Finding Friends in the Spoonie Community

One way to cope with the ongoing challenges is to make friends with others who truly understand those that you face, on a day-to-day, moment-to-moment basis. Finding others who are suffering with similar symptoms is nourishing and connecting with others who live with chronic pain can provide much comfort. Although they may have a very different illness or condition to your unique combination, they have the ability to be empathetic, encouraging, and a great source of support precisely because of their direct experience.

Yet just as the night is darkest before the dawn, so too can the sadness in our lives be lifted by new people who come into our lives. If you are reading this after being recently diagnosed and fear the loss of friends, take heart in the fact that so many new people will come into your life; brave, inspiring, beautiful, compassionate people.

Some feel their friendship circle actually expands after a diagnosis, or, perhaps more vitally, if you reach out to others in pain online, or in support groups. The capacity for human connection is something that even chronic illness and pain cannot take away.

Sunday, 17 May 2015

How Do You Cope With Severe Neuropathy?

Today's very useful, if lengthy, post from (see link below) is the first of two very different articles looking at how we learn to cope with our health problems as neuropathy patients. The advice given here is generally very valuable and definitely worth a read, whatever the extent of your pain and discomfort. You may not agree with everything but it's likely you'll find some very useful tips and ideas for coping with neuropathy in amongst it all. Recommended reading!

Coping With Neuropathy Pain, Anxiety, and Depression
By Scott Berman MD, Psychiatrist and Neuropathy Patient, (;
From Support for Neuropathy: Facebook Chat October 6 2011

Author of: Coping with Peripheral Neuropathy and Member of the Board of Directors, Network for Neuropathy Support, Inc.

There is a strong overlap between neuropathy pain, anxiety, and depression. Each of the three can raise the risk for having the other two. 30-60% of patients with chronic pain develop feelings of depression and anxiety. Pain and depression co-occur 30-50% of the time and each can cause the other.

Anxiety: Anxiety is to be expected in the face of being diagnosed with a chronic illness. Anxiety can take many forms. There is a difference between anxiety and chronic anxiety. It may be specific worries about the illness such as:

• Fear of relapse or worsening

• Fear of disability

• Fear of isolation

• Fear of stigma

• Fear of pain

There is no reason to suffer from chronic anxiety. There are very good treatments, including:

Non-medication methods:

Psychotherapy, including Cognitive-Behavioral Therapy (CBT): CBT involves learning to recognize the negative thoughts that lead to anxious feelings. Behavior therapy can include relaxation technique, gradual exposure to feared situations, and other techniques that allow mastery of fearful situations.

Relaxation training, which includes breathing exercises and progressive muscle relaxation

Mindfulness based stress reduction (very well studied):

Mindfulness based stress reduction combines aspects of meditation and yoga. It is usually done in an 8 week group format although some people are offering online courses. The books and tapes are also available for sale although I recommend finding a trainer. Many hospitals and complementary/alternative medicine centers use it. It has a good track record in helping people with chronic illnesses cope better.

• Spiritual and faith based help.

• Exercise, Massage and Yoga.

Medication treatment:

“Benzos” (benzodiazepines) include valium, klonopin, Ativan, Xanax

SSRIs (Prozac, Lexapro, Celexa, Paxil, Zoloft): help with panic attacks, PTSD, generalized anxiety disorder, others


• Is it mental or physical?

• Is it psychological, neurological, or medical?

• Are the symptoms really caused by your mind?

• Why these questions are a sure sign of people who are not up to date about the mind-brain-body connection.

• Why treating depression is often ignored? There are a number of reasons.

• The patient is unaware that he or she suffers from depression.

• The patient is embarrassed to ask for help.

• The physician fails to make the diagnosis.

• The physician fails to treat the depression or under-treats it.

• The patient is embarrassed to go to a psychiatrist.

• The patient’s doctor or family is embarrassed to talk about psychiatric care with the patient.

• The patient is afraid that the doctors think their neurological symptoms are “all in their head.”

Psychiatrists have terms for illnesses that are essentially psychological but show up with lots of physical complaints: “somatoform disorder,” “somatoform pain disorder,” and “hypochondriasis.”

I have worked with lots of patients who have been labeled “head cases” by other doctors and I have learned a lot. First, my own illness convinces me that someone can be essentially mentally healthy, get stricken with a chronic and incurable illness, and then develop an incredibly long and unbelievable story (except to fellow sufferers) about their illness. I am frankly skeptical about “psychological” pain disorders. The many patients in whom I have uncovered underlying other medical problems have been very high.

Depression in neuropathy (as well as in other rare and “invisible” diseases) is often confused with the disease. That is, continued problems in function are often attributed to “psychological” or “psychosomatic” (misused word) issues. Patients often feel insulted when psychotherapy/psychiatric care is suggested. Bottom line: all pain is real (unless you are faking), and physical symptoms most often have physical causes. The role of the psychiatrist/psychologist/counselor is to help with the emotional issues that arise from the stress of a medical disease.

Symptoms of depression:

• Persistent depressed mood or loss of pleasure in previously enjoyable activities

• Sleep changes (difficulty sleeping OR sleeping too much)

• Loss of interest

• Feelings of guilt or worthlessness

• Low energy

• Poor concentration

• Appetite (very little or increased)

• Agitation, pacing OR slowing down, moving very little

• Suicidal thoughts or plans

POINT: In neuropathy sleep changes, low energy, poor concentration is common but having 5 out of 9 symptoms above should trigger an evaluation for depression.

Depression is treatable in the face of virtually every known physical disease, including cancer and AIDs. So you should expect to be able to have your depression treated with good responses.

The best treatment for depression is a combination of psychotherapy and medication. Some people prefer therapy or counseling without medication because they already feel over- medicated. Other people feel so bad they can’t even talk in therapy and do better when started on medication.

Antidepressants work (based on a study of antidepressants in pooled neurological disease

Some antidepressants also treat pain or anxiety


• SSRIs (Prozac, Lexapro, Celexa, Zoloft, etc.)—well tolerated but don’t do much for pain

• Tricyclics (Amitriptyline, Nortriptyline, others)—may help with pain and depression

• SNRIs (Effexor, Pristiq, Cymbalta)

• Others: Remeron, bupropion, vilazadone


Self-Management Strategies

• Used in many chronic illnesses with very positive results

• Can reduce disability and improve psychological well-being

• Can help with catastrophising, fear, and avoidance

• Dysfunctional beliefs about pain can become a central problem

• Pain self efficacy questionnaire: Pain Self-Efficacy Questionnaire You can take it now and at later points to see if you are making progress

• Stanford University Chronic Pain Self-Management Program : CPSMP

• Online Disease Management Program: Click here to sign up for online disease management program

Topics include:

• Managing frustration, fatigue, pain, and isolation

• Appropriate exercises for maintaining flexibility and endurance

• Appropriate use of medications

• Techniques for dealing with friends, family, and health professionals

• Healthy eating

• Making informed treatment decisions

• Disease related problem solving

• Advanced directives

POINT: It is not clear to me whether this program specifically addresses the needs of the Peripheral Neuropathy community. At some point we might want to develop our own materials for a Neuropathy Self-Management Program. The topics are a good outline of a lot of what we might cover!

Reorganizing your activities:

• Things I can no longer do (for example, power walking).

• Things I couldn’t do before, but can now (have time to write and do crafts).

• Things I do the same as before (like sitting in the sunroom watching a sunset).

• Things I can still do, but differently (can go to a mall, but need a wheelchair).

• Things I can do differently, just not ready to yet (such as go to a Phillies game)

(from Debbie Dawson, RN, Peripheral Neuropathy Patient)


• Ask yourself exactly what part of your previous job/activity you enjoyed

• Talk with vocational/occupational specialists

• Don’t beat up on yourself

• Organize yourself and set small goals you can meet

• Try something new

• Know your ADA rights if you stay employed, and use the Job Accommodation Network ( Or 800-526-7234)


• You can tough it out with too little help OR become overly dependent on your doctor and family

• You can keep your illness a secret and avoid thinking about it OR you can discuss it openly and become self-pitying

• You can ask for help and risk being a burden OR be too independent and isolate yourself

• You can push yourself to the limit and risk getting sicker OR you can do too little and be more of an invalid than necessary

• You can be angry about your illness and then bitter OR you can focus only on counting your blessings and risk being self-delusional

(From The Chronic Illness Experience by Cheri Register)


• Keep up to date

• Keep routine health care up to date (flu shot, other vaccines)

• Quickly and aggressively treat any other condition—you can’t afford to wait!

• Remember, just because you have neuropathy doesn’t mean you can’t get other illnesses.

• Reduce “excess disability” that is impairments in function from other causes such as other illnesses

Beware of advertisements and self reports of improvement from particular drugs or treatments:

• Self reports often are positive and careful studies often show no benefit—for example modafinil seems very helpful for fatigue in MS in self reports but showed no real benefit in a careful study

• Self reports can be influenced by placebo effects.

• Self reports can be influenced by those who actually report: it is possible that people are more likely to post a report of a benefit than of no benefit. People with great benefit or great side effects might post more often than people with mixed results. People with minimal symptoms in the first place might be less likely to be active in a support group either in person or online. Since we don’t know the characteristics of those reporting or choosing to join, we can’t draw good conclusions about actual results

• Advertisements are from people selling a product!

• Anything that promises 100% response is 100% garbage

CONCLUSION: Buyer Beware! While it is very useful to search the internet, Facebook, and support sites such as and disease specific sites, you have no guarantee of safety or scientific validity. On the other hand you might find useful information that general physicians might not be aware of.

Gather information from groups and online, and review it with qualified health professionals

Even qualified health professionals have prejudices and distortions. University of Maryland Medical Center has a very popular Integrative and Complementary Medical Center featured in recent magazine article and multiple hard core “Western medicine only” doctors were quoted as dismissing it as quackery

Is the drug safe in general? Have a lot of people taken it for other conditions? What are the risks? What are the costs? Is the treatment part of a big money-making scheme?

2ND CONCLUSION: You have to decide if using a medication or a treatment which is experimental or off-label is right for you. But go in knowing all the risks and benefits.

Staying Up to Date

Getting the internet to send you updates:

Google Alerts:

• Go to:

• Follow directions to put in search terms (for example, neuropathy, neuropathic pain)

• Enter preferences and your email

• Get updates as Google finds them

PubMed Alerts:

• Go to

• Register and get a username and password

• Log in

Go to:

• Take the tutorials to learn how to search for articles

• Return to PubMed (

• Search for terms like Guillain Barré treatment

• Click on “save search”

• Follow prompts for how often you want new results sent to you by email

• Get on the email lists for the various neuropathy organizations!



• The Neuropathy Support Network and FREE DVD “Coping with Chronic Neuropathy” (

• Peripheral Nerve Society:

• Societies/websites for particular neuropathy causing diseases (cancer, diabetes, Lyme disease, fibromyalgia, etc.)

• Foundation for Peripheral Neuropathy ( has extensive resource guides and lists many external resources under “Tools”

Saturday, 16 May 2015

Stocking To Detect Neuropathic Foot Wounds

Today's post from (see link below) talks about a new, prototype product designed to help neuropathy patients who have lost so much feeling from their feet that they become prone to injury, pressure sores and open wounds (without realising it). It's a stocking with inbuilt sensors that monitors unduly high pressures on the foot and alerts the wearer to the problem before it causes physical injury. The problem is that it's currently only a prototype and is probably going to be very expensive but if it gets past the development stage, it could be a very useful tool which will hopefully prevent the nasty injuries loss of feeling in the feet can cause.

New pressure-monitoring device could prevent neuropathy-related injuries
Thu, 14 May 2015

Researchers from Germany have developed a pressure-monitoring stocking that could prevent foot wounds in people with diabetic neuropathy.

The device, which was developed by researchers at the Fraunhofer Institute for Silicate Research ISC in Würzburg, uses integrated sensors to send warnings when pressure on the foot is too high, essentially performing the job of the nerves in the feet.
Neuropathy and foot pressure Diabetic neuropathy is one of the most common diabetic complications. Over time, prolonged exposure to high blood glucose levels damages the nerves in the feet. Diabetic neuropathy is the leading cause of amputation in the UK.

When people develop diabetic neuropathy, they lose the feeling in their feet. This can have a number of damaging effects. One such effect is the inability to notice the amount of pressure being placed on the feet. People without diabetic neuropathy have functioning nerve pathways that automatically redistribute when the person is standing up for a long time.

Over time, excessive weight placed on the feet can lead to the development of pressure sores, which can in turn lead to open wounds or damaged foot tissue.
How does the pressure stocking work? The stocking features 40 dielectric elastomer sensors that measures pressure distribution. The sensors are made from a special silicone film. When pressure builds on the foot - usually because of standing in the same place for a while - the sensors transmit a signal to a wireless electronics unit.

The stocking will cost around £180.
What makes the pressure stocking different? There are several products available to balance out pressure on the foot for people with diabetes, but this one is different, according to Dr. Bernhard Brunner, of the Fraunhofer institute:

"Existing systems on the market measure the pressure distribution only on the bottom of the foot using shoe inserts. Our sensors are attached to the stocking's sole, at the hell, the top of the foot and the ankle, so they can take readings in three dimensions. This is a totally new approach."
Moving forward The device is brand new, and some creases still to be ironed out. Dr. Brunner explained the challenges that face the team going forward:

"With the current prototype, the electronics are attached to the end of the stocking. We're planning to relocate them to a small, button-sized housing that can be detached with a hook-and-loop fastening strip. There's no way around this until a reliable method for cleaning the electronics is developed."

The sensors have to be washable, too. "The first washability tests are in planning, but cleaning using disinfectant is no problem."

The researchers have filed a patent application for the stockings. From May 19 to May 20, the team will be presenting a prototype of the stockings at the SENSOR+TEST 2015 Measurement Fair in Nuremberg.

Friday, 15 May 2015

Gluten Intolerance And Neuropathy: New Findings

Today's post from (see link below) is the latest article linking gluten intolerance (celiac disease) to neuropathy. You may have read various articles from various sources, recommending reducing gluten in your diet if you have neuropathic problems. Quite often, dramatic results can be achieved when people exclude gluten from their food intake. However, it's by no means a universal truth and certainly not a scientific fact...yet. So what should you do? It's probably best to do as much research as possible via reliable sites on the question and discuss it carefully with your doctor (although most doctors aren't sure either). A gluten-free diet seems to have several benefits but is extremely difficult (and often boring!) to implement.

Celiac Disease Linked To Nerve Disease In Neuropathy Patients - Is Gluten To Blame?
By James Maynard, Tech Times | May 12, 8:27 AM

Gluten Intolerance could be tied to nerve damage. Should you be worried?

Celiac disease appears to be linked to nerve damage known as neuropathy.

Researchers examined medical records of over 28,000 patients with celiac disease as well as 139,000 people who were never diagnosed with the disorder. They found that those patients with the condition were 2.5 times as likely as the control group to suffer from nerve damage.

Celiac disease, also known as gluten intolerance, is a digestive disorder that causes pain and discomfort to sufferers when they consume the protein composite. This autoimmune response can reduce the efficiency of food absorption and can damage the linings of small intestines. Roughly 1 percent of all Americans suffers from gluten intolerance, regardless of race or gender.

The idea that the two medical conditions could be linked goes back about five decades, although this new study is the most-detailed investigation yet done of the idea.

Despite the apparent strong correlation between neuropathy and celiac disease, the total numbers of patients still remains low enough that a definite correlation between the two conditions cannot be proven. Neuropathy was seen in 0.3 percent of patients in the control group and 0.7 percent of people with celiac disease. There was no apparent difference in the possible correlation of the two conditions detected between men and women.

"We found an increased risk of neuropathy in patients with CD [celiac disease] that persists after CD diagnosis. Although absolute risks for neuropathy are low, CD is a potentially treatable condition with a young age of onset. Our findings suggest that screening could be beneficial in patients with neuropathy," researchers wrote in an article detailing their study.

According to the National Foundation for Celiac Awareness, roughly 83 percent of people suffering from CD are not diagnosed, or their health care provider believes their symptoms are attributable to other causes. Patients can often wait between six and 10 years before they are properly diagnosed with the disorder. Celiac disease can also lead to other autoimmune diseases, neurological disorders, reduced bone density and even some forms of cancer. There are no known treatments for the condition, leaving patients with little choice except to remove gluten — which gives dough its elasticity — from their diets.

Neuropathy is a medical term used for many different forms of nerve damage, although it usually refers to nerves outside the central nervous system. Such damage can be brought on from a number of causes, including infection, physical trauma or chemical influences. Many forms can be treated through therapy and drugs.

Analysis of the possible association of celiac disease with neuropathy was profiled in the journal Jama Neurology.

Thursday, 14 May 2015

Thymosin Beta 4 (Protein) Potential For Neuropathy

Today's post from (see link below) is actually a press release from the manufacturers of Thymosin B4. According to Wikipedia, "Thymosin beta-4 is a protein that in humans is encoded by the TMSB4X gene. The protein consists (in humans) of 43 amino acids". Thymosin Beta 4 is claimed to be able to protect nerves and reduce neuropathic damage. Big claims, which are only borne out after tests on mice but the idea of this protein being able to actually repair and regenerate damaged nerves is a very seductive one. We will have to wait some time before the testing and research processes are complete but it certainly looks promising and is yet more evidence of how drug companies are now taking neuropathy much more seriously as an expansion area.

Researchers Report that Long-Term Administration of Thymosin B4 in a Diabetic Animal Model Prevents Progression of Peripheral Neuropathy and Restores Sciatic Nerve Function 
4 days ago May 2015

RegeneRx Biopharmaceuticals, Inc. (RGRX), a clinical-stage drug development company focused on tissue protection, repair and regeneration, today announced that independent researchers have reported that diabetic mice treated long-term with Thymosin B4 (TB4) have significantly improved motor and sensory function in the sciatic nerve compared to the untreated animals and that TB4 protects the nerves and reverses neurological damage in diabetic neuropathy.

The improvement is closely associated with amelioration of sciatic nerve axonal and myelin damage and an increase of intraepidermal nerve fiber density. In vitro, TB4-treated neurons derived from the diabetic mice had more extensive neurite outgrowth compared to the untreated neurons. Furthermore, the researchers identified the protein that contributes to axonal remodeling.

“These results demonstrate the positive effects that TB4 has on a well-accepted animal model of diabetic peripheral neuropathy and again confirms the ability of TB4 to repair damage and promote tissue regeneration in vivo. The positive impact of TB4 on the tissue and nerve damage, as well as on the function of the sciatic nerve, is extremely encouraging and suggests a potential role for TB4 in the treatment of diabetic peripheral neuropathy in humans. Moreover, the demonstration that reduction of glucose was not required to see the effects of TB4 is consistent with knowledge that reducing glucose levels does not ameliorate diabetic peripheral neuropathy. In addition, these new data are consistent with prior robust findings that TB4 has potent neurovascular restorative effects for both neural injury and degeneration in the central and peripheral nervous systems,” stated Michael Chopp, Ph.D., a member of the research team, Scientific Director of the Henry Ford Neuroscience Institute, and the Zoltan J. Kovacs Chair in Neuroscience Research.

“Since progressive loss of peripheral nerve function due to decreased nerve fibers and reduction in myelin is a major cause of morbidity in diabetes and in other conditions, these findings on the protective and restorative role of TB4 offer a significant potential new therapy for these patients. This study is very significant for RegeneRx as diabetic peripheral neuropathy is one of the targets for the use of RGN-352, our injectable TB4 formulation developed for systemic administration, and supports our continued investment in this area,” stated J.J. Finkelstein, RegeneRx’s president and chief executive officer.

The research was conducted by Dr. Lei Wang and her colleagues in the Department of Neurology at Henry Ford Hospital in Detroit, Michigan and the Department of Physics at Oakland University in Rochester, Michigan under a Material Transfer Agreement between Henry Ford Hospital and RegeneRx Biopharmaceuticals, Inc. The study was published in the Journal of Diabetes Research; 2015:173656. Doi: 10.1155/2015/173656, Epub 2015 Apr 7.

About Diabetic Peripheral Neuropathy

Diabetes affects an estimated 346 million people worldwide. Peripheral neuropathy is a progressive complication of diabetes and is associated with degeneration and demyelination of peripheral nerves. There is currently no effective treatment for preventing the development or reversing the progression of diabetic neuropathy. Symptoms can range from pain and numbness in the extremities to problems with the digestive system, urinary tract, blood vessels and heart and can be painful, disabling, and even fatal.

About RegeneRx Biopharmaceuticals, Inc. (

RegeneRx is focused on the development of a novel therapeutic peptide, Thymosin beta 4, for tissue and organ protection, repair and regeneration. RegeneRx currently has three drug candidates in clinical development for ophthalmic, cardiac and dermal indications, three active strategic licensing agreements in China, Pan Asia (Korea, Japan, and Australia, among others) and in the U.S. RGN-259, the Company’s TB4-based ophthalmic drug candidate is being developed for dry eye syndrome and for the treatment of neurotrophic keratopathy (NK), both of which are being developed in the U.S through its joint venture, ReGenTree. RGN-259 has been granted orphan status by the U.S. FDA and was recently allowed by the FDA to move into phase 3 clinical trials for the treatment of patients with NK. RGN-352, the Company’s TB4-based injectable drug candidate, is a phase 2-ready drug candidate designed to be administered systemically to prevent and restore tissue damage associated with acute events such as heart attacks, strokes, and other similar injuries. RGN-137, the Company’s TB4-based dermal gel, is in phase 2 clinical development. For additional information about RegeneRx please visit

Forward-Looking Statements

Any statements in this press release that are not historical facts are forward-looking statements made under the provisions of the Private Securities Litigation Reform Act of 1995. Any forward-looking statements involve risks and uncertainties that could cause actual results to be materially different from historical results or from any future results expressed or implied by such forward-looking statements. There can be no assurance that any research published by the Company or any third party will be able to be replicated in human conditions, disorders or injuries, or prove to be commercially valuable. There can also be no assurance that any of the Company’s drug candidates will result in any approved products in the U.S. or any other country. Please view these and other risks described in the Company’s filings with the Securities and Exchange Commission (“SEC”), including those identified in the “Risk Factors” section of the annual report on Form 10-K for the year ended December 31, 2014, and subsequent quarterly reports filed on Form 10-Q, as well as other filings it makes with the SEC. Any forward-looking statements in this press release represent the Company’s views only as of the date of this release and should not be relied upon as representing its views as of any subsequent date. The Company specifically disclaims any obligation to update this information, as a result of future events or otherwise, except as required by applicable law