Friday, 26 May 2017
An explanation of various treatments for neuropathy Warning! It aint gonna go viral on YouTube!
We're going to drop in on the 2006, Rare Neuroimmunologic Disorders Symposium to listen to and watch a talk given by Joanne Lynn MD. For the first two and a half minutes you may well wonder why, because the video takes some time to get to the point, or at least the points that are relevant to us. Apart from that, the good lady is not exactly the most inspiring speaker to listen to but stay with it because there is so much useful information and explanation which is specific to our problems. Apart from that, the slides that are shown, explain the difficult vocabulary that would normally go in one ear and out of the other.
You must remember that this is a medical professional talking to other medical professionals and therefore, there aren't very many fireworks to keep your attention but it's worth the effort. I've watched this three times and have learned something new and useful each time.
You can read the transcript of the video on: http://www.myelitis.org/newsletters/v7n2/newsletter7-2-02.htm
It helps!
Tuesday, 16 May 2017
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Sunday, 19 March 2017
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Monday, 20 February 2017
Fibromyalgia Vs Neuropathy The Argument Goes On
Today's post from consultqd.clevelandclinic.org (see link below) highlights something that has seemed pretty obvious to both neuropathy and fibromyalgia patients for a long time - both conditions are neurological in origin and both are treated by much the same medications, with the same lack of success. Basically, fibromyalgia is a rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localized sensitivity and tenderness at specific points on the body. Patients have highly sensitised nerves that display strange sensations including severe pain. No difference with neuropathy there then. The point is that for many years, doctors have refused to put the two conditions together because it was assumed that the problems were solidly muscular or rheumatic in nature; or, even worse, psychosomatic! However, just as with neuropathy, the pain and other sensations can only be experienced through nerves and neural pathways, so how can it not be neuropathic too? This article tries to both legitimise fibromyalgia and prove that neural dysfunction is a key element. Why is this important to the average neuropathy patient? Well because the symptoms can be so similar in terms of what the patient actually feels, that he or she just doesn't understand the diagnosis he or she is given. There are so many forms of neuropathy, why shouldn't fibromyalgia be one of them!

Central sensitization is one explanation
Mar. 8, 2016 / Pain Management
The etiology of fibromyalgia is still largely unknown, but it isn’t as controversial as it used to be.
A decade ago, the chronic rheumatic disease was most often attributed to muscle and ligament problems. Some declared it a psychogenic disorder. (Some still do.) More recently, however, studies have linked fibromyalgia with malfunctioning neurotransmitters, neurochemical imbalances and other neuropathic conditions.
“Today, it’s more widely accepted that fibromyalgia is primarily a neurogenic disease,” says Philippe Berenger, MD, a pain management specialist at Cleveland Clinic. “It still doesn’t explain the disease, but it’s a step forward.”
Dr. Berenger bolstered this belief in a presentation at Cleveland Clinic’s 18th Annual Pain Management Symposium in San Diego in March.
Definitions we can agree on
In 1994, the International Association for the Study of Pain (IASP) defined neuropathic pain as “initiated or caused by a primary lesion or dysfunction of the nervous system.” In 2008, the IASP’s Neuropathic Pain Special Interest Group tweaked the definition to include “disease of the somatosensory nervous system.”
“Fibromyalgia fits these definitions,” says Dr. Berenger. “Although the condition has no anatomically definable lesions, it is marked by altered neurological function in the spinal cord and brain. It can, therefore, be considered a dysfunction of the central inhibitory process of pain control.”
Fibromyalgia’s link to central sensitization
It’s clear that fibromyalgia has mechanisms and pathways associated with central sensitization, he notes. The condition follows similar pathways as other neuropathic pain syndromes, such as complex regional pain syndrome, interstitial cystitis and irritable bowel syndrome.
“All nerves in fibromyalgia patients are more sensitive than they should be — including the brain and spinal cord,” says Dr. Berenger. “Many patients have difficulty with concentration or have hypersensitivity to light, odors or sounds. Some have additional neuropathic pain syndromes or struggle with autonomic dysfunction, such as vasovagal symptoms.”
Central sensitization has been demonstrated in animals and humans by using various triggers (e.g., mustard oil, heat, hypertonic saline injection) to activate nociceptors in skin, viscera or muscle. Sensitization presents as:
Tactile allodynia
Hyperalgesia
Enhanced pressure and thermal sensitivity
Spreading to neighboring nonstimulated sites and remote regions
Increased excitability of spinal cord neurons can cause a series of events:
Increased duration (spontaneous firing) and a growing area of response
Abnormal neuro-anatomical reorganization (new connections between A-beta, A-delta and C fibers, which spread and involve multiple dermatomes)
Diffuse symptoms — which can outlast the stimuli (long-term potentiation)
Newer evidence supports neurogenic claim
In 2014, researchers discovered through skin biopsy that patients with fibromyalgia had lower epidermal nerve fiber density than patients without fibromyalgia. Small fiber neuropathy, therefore, is likely another contributing factor in fibromyalgia pain — and yet more evidence that the condition has neurogenic roots, notes Dr. Berenger.
What this means for treatment
“Most of the drugs used today to treat fibromyalgia — like antidepressants and antiepileptics — are already focused on neurological targets,” says Dr. Berenger.
However, considering fibromyalgia as a central sensitization disorder opens up a larger array of treatment options, he says. Agents active on the central nervous system include:
Sodium channel blockers
Calcium channel blockers
Serotonin-norepinephrine reuptake inhibitors (SNRI)
NMDA receptor antagonists
Nerve growth factor (NGF) inhibitors
Low-dose naltrexone is another treatment option on the horizon. One 2013 study found that the drug significantly reduced pain and improved mood and general satisfaction in people with fibromyalgia. Other studies have reported similar positive responses to the drug.
“It’s all in the mind”
Saying that fibromyalgia is “all in the mind” isn’t entirely wrong, concludes Dr. Berenger.
“Pain pathways and centers are in the brain. And we can employ techniques like mindfulness and biofeedback to control pain,” he says. “However, it’s more helpful — and accurate — to consider it a neurogenic disorder.”
https://consultqd.clevelandclinic.org/2016/03/why-fibromyalgia-is-neuropathic/
Tuesday, 27 December 2016
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Monday, 28 November 2016
When The War On Drugs Hit The Super Bowl
Today's post from statnews.com (see link below) once more focusses on the opioid crisis; an issue that won't go away and has a direct bearing on the lives of many neuropathy sufferers who need strong medications to dampen their pain. This time it's the Super Bowl hitting the spotlight for different reasons than the quality of sport. It was an advertisement trying to elicit sympathy for genuine patients who need opioids to stay sane that caused all the fuss and just goes to show what happens when someone tries to go against the flow of current media opinion. It also shows quite how much issues can be media-driven and that's a dangerous trend, especially when it concerns medical issues that the media has very little understanding of. Whatever the statistics of drug overdose, drug abuse and drug criminality, there is a significant segment of society that needs strong medications to be able to function normally. These people with chronic pain diseases must not be ignored or swept away on a tide of media hysteria. They must be able to have access to the drugs they need - end of story! If there's a problem with criminality and or drug abuse, then tackle that problem but leave the genuine patients alone!
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| "Well, that's one opinion!' |
By Rebecca Robbins @rebeccadrobbins February 8, 2016
A Super Bowl ad mixed humor and empathy as it introduced the problem of opioid-induced constipation.
Abuse of prescription painkillers has grabbed center stage in conversations about the nation’s opioid epidemic. Presidential candidates talk openly about their relatives’ struggles with addiction. Officials at the state and federal levels ponder ways to restrict the number and dosage of pills doctors can prescribe.
That’s why it was so striking to see a Super Bowl ad that took a different tack: It aimed to stir empathy for patients who truly need the drugs to manage chronic pain.
The 1-minute spot targeted viewers who “need an opioid to manage chronic pain” — and who suffer from a common side effect of the pain relievers, constipation.
Read more: Obama wants $1.1 billion to fight opioid abuse Striking a balance between humor and gravitas, the ad featured a man suffering from the condition who can’t help noticing that everyone else around him can poop: A dog on the street. A woman with toilet paper stuck to her shoe. Even a sugar shaker dispenses crystals with ease.
The ad drew sharp rebuke from high-profile observers on social media, who saw it as a tone-deaf commercial play amid a devastating public health crisis.
“Big pharma buys #Superbowl ad to warn about the most pressing effect of opiates: constipation. Thanks. For nothing,” tweeted the police department in Burlington, Vt.
Even White House Chief of Staff Denis McDonough weighed in on Twitter: “Next year, how about fewer ads that fuel opioid addiction and more on access to treatment.”
But several advocates for patients with pain saw it differently. They spent months advising drug makers on the ad, and said their goal was simple: to illuminate one of the burdens faced by the patients they represent.
Paul Gileno, president of the US Pain Foundation, was particularly troubled by a coarse tweet from comedian Bill Maher, who joked that the ad seemed to be aimed at “junkies.”
That happens all too often, Gileno said: Patients in persistent, terrible pain are wrongly “labeled as junkies or pill seekers” because they seek relief. Yes, he said, there’s a need to educate people about painkiller abuse. But there’s also a need to remind the public that these drugs have legitimate uses.
“There is a huge need for education on both issues,” Gileno said.
Read more: Opioid crisis drives record overdose deaths
“We definitely see both sides of the issue, and both sides need to be dealt with, but we can’t forsake one of the issues,” said Barby Ingle, president of the International Pain Foundation.
The ad didn’t promote a specific medication. Instead, it urged patients to ask their doctor about prescription treatment options for the condition. It also plugged a website that links to information about Movantik, a drug marketed by the ad’s makers, AstraZeneca and Daiichi Sankyo.
The spot was directed by Lenny Dorfman, a veteran ad maker with Hungry Man Productions who works on commercials for big-name consumer brands like Nike and Coca-Cola.
Super Bowl ads tend to focus on products and issues that have mass appeal. That’s why, for example, you tend not to see the ads for erectile dysfunction that dominate the airwaves during regular season NFL games.
So it was telling that the advertisers deemed prescription opioid users suffering from a particular side effect to be a large enough market to justify a Super Bowl ad. Thirty-second spots during the game sold for up to $5 million.
Abigail Bozarth, an AstraZeneca spokeswoman, said the company’s goal was to “open the door” for patients with opioid-induced constipation to talk with their doctors, “which provides another important touch point to help ensure opioids are being appropriately used.”
In 2014, prescription opioid pain relievers killed about 19,000 people, up more than threefold since 2001.
This story was updated with more information about the response from local and federal officials to the Super Bowl ad.
Rebecca Robbins can be reached at rebecca.robbins@statnews.com
Follow Rebecca on Twitter @rebeccadrobbins
http://www.statnews.com/2016/02/08/opioid-constipation-super-bowl-ad/
Friday, 18 November 2016
Nerve Damage Whats Going On
Very short and simple but very useful for people new to neuropathy, todays post from interohealthcare.com (see link below) sums up nerve damage and which nerves are involved in a nutshell. Thanks to the complex nature of neuropathy, it's so easy to forget the basic details of what's happening to your body. This short article is a useful refresher for everybody living with neuropathy.

Info from WebMD: Never Damage
Your nervous system is involved in everything your body does, from regulating your breathing to controlling your muscles and sensing heat and cold.
There are three types of nerves, or neurons, in the body:
Autonomic nerves. These nerves control the involuntary or partially voluntary activities of your body, including heart rate, blood pressure, digestion, and temperature regulation.
Motor nerves. These nerves control your movements and actions by passing information from your brain and spinal cord to your muscles.
Sensory nerves. These nerves relay information from your skin and muscles back to your spinal cord and brain. The information is then processed to let you feel pain and other sensations.
Nerve pain and nerve damage can be mild. But, because nerves are essential to all you do, nerve pain and damage can seriously affect your quality of life.
What Are the Symptoms of Nerve Pain and Nerve Damage?
With nerve damage there can be a wide array of symptoms. Which ones you may have depends on the location and type of nerves that are affected. Damage can occur to nerves in your brain and spinal cord. It can also occur in the peripheral nerves, which are located throughout the rest of your body.
Autonomic nerve damage may produce the following symptoms:
inability to sense chest pain, such as angina or heart attack
too much sweating (known as hyperhidrosis) or too little sweating (known as anhidrosis)
lightheadedness
dry eyes and mouth
constipation
bladder dysfunction
sexual dysfunction
Damage to motor nerves may produce the following symptoms:
weakness
muscle atrophy
twitching, also known as fasciculation
paralysis
Sensory nerve damage may produce the following symptoms:
pain
sensitivity
numbness
tingling or prickling
burning
problems with positional awareness
In some instances, people with nerve damage will have symptoms that indicate damage to two, or even three, different types of nerves. For instance, you might experience weakness and burning of your legs at the same time.
http://www.interohealthcare.com/conditions-helped-2/nerve-damage/
Wednesday, 17 August 2016
Neuropathy On Video
Today's post consists of two short videos (from Drs. Marc Spitz and Jennifer Feeny respectively) and is really intended for those new to the disease. They give good descriptions of what's happening to you and what can generally be done about it. The information is by definition limited because of the length of the videos but it will give you a good idea of what you're dealing with. After that, you need to do your own research and most importantly, talk to your doctor or specialist. Making a list of questions you have will help you get as much as possible from a short appointment.
Saturday, 16 July 2016
Join The FDA Discussion On Neuropathy
Today's post from nationalpainreport.com (see link below) seems to be a sincere call for neuropathy patients to share their experiences with the FDA (US Food and Drug Authority). Of course it is aimed at US neuropathy patients but there is no reason why the rest of the world can't join in too. After all, the more information a serious medical authority such as the FDA receives, the better its findings will be and the rest of the world will benefit later. There are various ways to react (click on the 'click here' link at the end of the 2nd paragraph) including digitally so everyone with a computer can submit their opinions and experiences. If we're serious about getting the message across that neuropathy needs to be taken seriously then we have to contribute ourselves to the discussion. By the way: The FDA public meeting is today, June 10th 2016

Have Peripheral Neuropathy? Tell the FDA
Posted on June 6, 2016 By Staff
On June 10th, the FDA is convening a Public Meeting on Patient-Focused Drug Development for Neuropathic Pain Associated with Peripheral Neuropathy. The Agency is holding the meeting to address drug development needs and priorities for neuropathic pain associated with peripheral neuropathy.
Richard “Red” Lawhern, PhD emailed The National Pain Report over the weekend to urge people to participate (click here) and share with our readers what he is prepared to tell the FDA.
For the long term, several experimental drugs or classes of drugs appear to offer potential for enhanced effectiveness in treating chronic pain due to peripheral neuropathy. One of these is CNV1014802, a novel small-molecule Sodium channel blocker specific to the Trigeminal Nerve. The drug was developed by Convergence Pharmaceuticals in the UK and completed Phase II Trials. Convergence was bought by a US company and the status of CNV1014802 is presently unclear. Further work on this agent needs to be accelerated and placed under close NINDS oversight. Authorization for use as an orphan drug should be accelerated.
There are published early reports of effectiveness in pain control from use of Peptides found in spider venoms. Isolation of active agents and testing for safety and effectiveness in humans should receive priority funding.
Despite the legal restrictions still placed on Marijuana, there is ample evidence in patient reports that several strains of this natural plant can be used effectively in pain management for a wide variety of chronic pain conditions including peripheral neuropathy. NIH funding is needed to bring this type of research out of the shadows and integrate it into mainstream medicine. If legislative changes are needed, then seek them soon.
The most important near term outcome that this public meeting can reinforce is recognition that legally prescribed opioid medications play an indispensable role in present treatment of chronic neuropathic pain which is refractory to other therapies. In this context, the recently published CDC voluntary guidelines on prescription of opioids in adult chronic non-cancer pain need to be withdrawn immediately and rewritten to make this role clear — in both peripheral neuropathic pain and many other chronic pain conditions.
In their present form, the CDC guidelines have become a defacto restrictive practice standard that is driving doctors out of pain management, and thousands of patients into unmitigated agony. The basis for the guidelines is also scientifically weak and may have reflected professional or financial self-interest bias on the part of some participants in the Consultants Working Group that supported the writing. Insofar as I can determine, the working group did not include a SINGLE practicing Board Certified pain management specialist who is actively treating patients. Revisions of the guidelines need to reflect a much more patient-centered frame of reference, with explicit recognition that dose levels must be tailored to the individual patient and that effectiveness is highly variable between patients due to genetic factors which make some people poor metabolizers of this class of medication.
http://nationalpainreport.com/have-peripheral-neuropathy-tell-the-fda-8830661.html
Saturday, 9 July 2016
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