What Do We Know About Chronic Pain

Today's post is the third in a series from 4therapy.com (see link below), which looks at the psychological aspects of having neuropathy and other forms of chronic pain. This one looks at pain itself, what it does and why it happens. It also considers various options for tackling pain in the future - a very useful guide to understanding your pain.

A Pain Primer: What Do We Know About Pain?
Source: National Institute of Neurological Disorders and Stroke

We may experience pain as a prick, tingle, sting, burn, or ache. Receptors on the skin trigger a series of events, beginning with an electrical impulse that travels from the skin to the spinal cord. The spinal cord acts as a sort of relay center where the pain signal can be blocked, enhanced, or otherwise modified before it is relayed to the brain. One area of the spinal cord in particular, called the dorsal horn, is important in the reception of pain signals.

The most common destination in the brain for pain signals is the thalamus and from there to the cortex, the headquarters for complex thoughts. The thalamus also serves as the brain's storage area for images of the body and plays a key role in relaying messages between the brain and various parts of the body. In people who undergo an amputation, the representation of the amputated limb is stored in the thalamus.

Pain is a complicated process that involves an intricate interplay between a number of important chemicals found naturally in the brain and spinal cord. In general, these chemicals, called neurotransmitters, transmit nerve impulses from one cell to another.

There are many different neurotransmitters in the human body; some play a role in human disease and, in the case of pain, act in various combinations to produce painful sensations in the body. Some chemicals govern mild pain sensations; others control intense or severe pain.

The body's chemicals act in the transmission of pain messages by stimulating neurotransmitter receptors found on the surface of cells; each receptor has a corresponding neurotransmitter. Receptors function much like gates or ports and enable pain messages to pass through and on to neighboring cells. One brain chemical of special interest to neuroscientists is glutamate. During experiments, mice with blocked glutamate receptors show a reduction in their responses to pain. Other important receptors in pain transmission are opiate-like receptors. Morphine and other opioid drugs work by locking on to these opioid receptors, switching on pain-inhibiting pathways or circuits, and thereby blocking pain.

Another type of receptor that responds to painful stimuli is called a nociceptor. Nociceptors are thin nerve fibers in the skin, muscle, and other body tissues, that, when stimulated, carry pain signals to the spinal cord and brain. Normally, nociceptors only respond to strong stimuli such as a pinch. However, when tissues become injured or inflamed, as with a sunburn or infection, they release chemicals that make nociceptors much more sensitive and cause them to transmit pain signals in response to even gentle stimuli such as breeze or a caress. This condition is called allodynia -a state in which pain is produced by innocuous stimuli.

The body's natural painkillers may yet prove to be the most promising pain relievers, pointing to one of the most important new avenues in drug development. The brain may signal the release of painkillers found in the spinal cord, including serotonin, norepinephrine, and opioid-like chemicals. Many pharmaceutical companies are working to synthesize these substances in laboratories as future medications.

Endorphins and enkephalins are other natural painkillers. Endorphins may be responsible for the "feel good" effects experienced by many people after rigorous exercise; they are also implicated in the pleasurable effects of smoking.

Similarly, peptides, compounds that make up proteins in the body, play a role in pain responses. Mice bred experimentally to lack a gene for two peptides called tachykinins-neurokinin A and substance P-have a reduced response to severe pain. When exposed to mild pain, these mice react in the same way as mice that carry the missing gene. But when exposed to more severe pain, the mice exhibit a reduced pain response. This suggests that the two peptides are involved in the production of pain sensations, especially moderate-to-severe pain. Continued research on tachykinins, conducted with support from the NINDS, may pave the way for drugs tailored to treat different severities of pain.

Scientists are working to develop potent pain-killing drugs that act on receptors for the chemical acetylcholine. For example, a type of frog native to Ecuador has been found to have a chemical in its skin called epibatidine, derived from the frog's scientific name, Epipedobates tricolor. Although highly toxic, epibatidine is a potent analgesic and, surprisingly, resembles the chemical nicotine found in cigarettes. Also under development are other less toxic compounds that act on acetylcholine receptors and may prove to be more potent than morphine but without its addictive properties.

The idea of using receptors as gateways for pain drugs is a novel idea, supported by experiments involving substance P. Investigators have been able to isolate a tiny population of neurons, located in the spinal cord, that together form a major portion of the pathway responsible for carrying persistent pain signals to the brain. When animals were given injections of a lethal cocktail containing substance P linked to the chemical saporin, this group of cells, whose sole function is to communicate pain, were killed. Receptors for substance P served as a portal or point of entry for the compound. Within days of the injections, the targeted neurons, located in the outer layer of the spinal cord along its entire length, absorbed the compound and were neutralized. The animals' behavior was completely normal; they no longer exhibited signs of pain following injury or had an exaggerated pain response. Importantly, the animals still responded to acute, that is, normal, pain. This is a critical finding as it is important to retain the body's ability to detect potentially injurious stimuli. The protective, early warning signal that pain provides is essential for normal functioning. If this work can be translated clinically, humans might be able to benefit from similar compounds introduced, for example, through lumbar (spinal) puncture.

Another promising area of research using the body's natural pain-killing abilities is the transplantation of chromaffin cells into the spinal cords of animals bred experimentally to develop arthritis. Chromaffin cells produce several of the body's pain-killing substances and are part of the adrenal medulla, which sits on top of the kidney. Within a week or so, rats receiving these transplants cease to exhibit telltale signs of pain. Scientists, working with support from the NINDS, believe the transplants help the animals recover from pain-related cellular damage. Extensive animal studies will be required to learn if this technique might be of value to humans with severe pain.

One way to control pain outside of the brain, that is, peripherally, is by inhibiting hormones called prostaglandins. Prostaglandins stimulate nerves at the site of injury and cause inflammation and fever. Certain drugs, including NSAIDs, act against such hormones by blocking the enzyme that is required for their synthesis.

Blood vessel walls stretch or dilate during a migraine attack and it is thought that serotonin plays a complicated role in this process. For example, before a migraine headache, serotonin levels fall. Drugs for migraine include the triptans: sumatriptan (Imitrix®), naratriptan (Amerge®), and zolmitriptan (Zomig®). They are called serotonin agonists because they mimic the action of endogenous (natural) serotonin and bind to specific subtypes of serotonin receptors.

Ongoing pain research, much of it supported by the NINDS, continues to reveal at an unprecedented pace fascinating insights into how genetics, the immune system, and the skin contribute to pain responses.

The explosion of knowledge about human genetics is helping scientists who work in the field of drug development. We know, for example, that the pain-killing properties of codeine rely heavily on a liver enzyme, CYP2D6, which helps convert codeine into morphine. A small number of people genetically lack the enzyme CYP2D6; when given codeine, these individuals do not get pain relief. CYP2D6 also helps break down certain other drugs. People who genetically lack CYP2D6 may not be able to cleanse their systems of these drugs and may be vulnerable to drug toxicity. CYP2D6 is currently under investigation for its role in pain.

In his research, the late John C. Liebeskind, a renowned pain expert and a professor of psychology at UCLA, found that pain can kill by delaying healing and causing cancer to spread. In his pioneering research on the immune system and pain, Dr. Liebeskind studied the effects of stress-such as surgery-on the immune system and in particular on cells called natural killer or NK cells. These cells are thought to help protect the body against tumors. In one study conducted with rats, Dr. Liebeskind found that, following experimental surgery, NK cell activity was suppressed, causing the cancer to spread more rapidly. When the animals were treated with morphine, however, they were able to avoid this reaction to stress.

The link between the nervous and immune systems is an important one. Cytokines, a type of protein found in the nervous system, are also part of the body's immune system, the body's shield for fighting off disease. Cytokines can trigger pain by promoting inflammation, even in the absence of injury or damage. Certain types of cytokines have been linked to nervous system injury. After trauma, cytokine levels rise in the brain and spinal cord and at the site in the peripheral nervous system where the injury occurred. Improvements in our understanding of the precise role of cytokines in producing pain, especially pain resulting from injury, may lead to new classes of drugs that can block the action of these substances.

http://www.4therapy.com/life-topics/chronic-pain/pain-primer-what-do-we-know-about-pain-2860

How Do Anti Convulsants Work For Neuropathy

Today's post from painhq.org (see link below) looks at a common treatment for neuropathic pain and that is anti-convulsants or anti-epilepsy drugs. Many people living with neuropathy are prescribed these drugs after anti-depressants have failed and they are generally a pre-cursor to opiates (if they don't work for you). It is wise to consult carefully with your doctor (especially with Lyrica)depending on which anti-convulsant is prescribed and what the cause of your neuropathy is, as the side effects can be significant and for certain groups these drugs haven't been proven to work at all. It is a useful article in that it explains what they are and how they work and very often patients are not given this information by their doctors because it's assumed the patient will have difficulty understanding the science behind the drug's working process.

Anticonvulsants 
No author or date available
 
What are Anticonvulsants?

Anticonvulsants are a group of drugs that were designed to help manage seizures, but have since been used in the treatment and management of neuropathic pain. It is a fairly large and diverse family of drugs, sometimes referred to as ‘anti-seizure medications’ or ‘antiepileptics’. These drugs are thought to work through a number of different mechanisms: some may block different neurotransmitters; others may affect nerve signalling and ‘firing’ through binding to different receptors; altering ion channels in the brain; or ‘stabilizing’ some of the nerve cell membranes to ‘quiet’ pain signalling. On balance, it is thought that through these various mechanisms anticonvulsants affect pain communication pathways for patients with neuropathic pain.

How do they work?

Anticonvulsants were first used in pain management because it was thought that the nature of pain was somewhat similar to that of epileptic seizures – too much nerve cell firing. A number of these drugs have been shown to block the signals from damaged neurons which would normally communicate pain within the body.

What kinds are there? 
 
Gabapentin (Neurontin): Gabapentin works by binding to the calcium channels in neurons. These calcium channels help communicate pain within the body and, when blocked, help to dull the signal. Gabapentin is one of the only drugs used to treat neuropathic pain that is solely metabolized through the kidney (most are metabolized through the liver). It is considered one of the ‘first line’ medication treatments for most neuropathic pain syndromes. It is often used for treating post-herpetic neuralgia and diabetic neuropathy. 

Pregabalin (Lyrica): Developed as a more potent follow-up to Gabapentin, Pregabalin has been prescribed for postherpetic neuralgia, diabetic peripheral neuropathy and central neuropathic pain. Pregabalin is also associated with a lower risk for dependency and potential abuse. 
 
Carbamazepine (Tegretol) / Oxcarbazepine (Trileptal): Carbamazepine works by binding to sodium channels in neurons and limiting pain signals. Used It is frequently used to treat trigeminal neuralgia, but also diabetic neuropathy and potentially other forms of neuropathic pain (though more research is necessary). 

Valproate (Sodium valproate, valproic acid): Valproate helps block calcium channels and increases the levels of GABA in the brain. The calcium channels help to communicate pain while GABA helps to black dull pain signals in the brain by blocking communication channels and affecting nerve transmission. More evidence is needed to determine the use of Valproate in the treatment of neuropathic pain. 

Lamotrigine (Lamictal): Lamotrigine helps to block sodium channels and helps to regulate signals between neurons. Used it is sometimes used in the treatment of trigeminal neuralgia, diabetic neuropathy and central neuropathic pain. There are increased risks of side effects in woman using Lamotrigine, which also poses certain risks for pregnancies. 

Topiramate (Topamax): Topiramate has a number of mechanisms of action including sodium channels, calcium channels, GABA receptors, AMPA receptors and carbonic anhydrases. More evidence is needed to determine the use of Topiramate in the treatment of neuropathic pain.

Levetiracetam (Keppra): Levetiracetam works by binding to calcium channels in neurons, though it’s mechanisms aren’t fully understood. It can be used in the treatment of peripheral neuropathic pain. 

Lacosamide (Vimpat): Lacosamide works by binding to sodium channels in neurons, which prevents them from firing. Lacosamide also targets the cell which have been active for a longer period of time; in other words, damaged, over-active nerve cells that are sending pain signals (versus healthy cells). Lacosamide is used in the treatment of diabetic peripheral neuropathy.

What kind of Anticonvulsant is most effective for you?

Gabapentin (0)

Pregabalin (0)

Carbamazepine (0)

Valproate (0)

Lamotrigine (0)

Lacosamide (0)

Levetiracetam (0)

Topiramate (0)

Related evidence

Hearn L, Derry S, Moore RA. Lacosamide for neuropathic pain and fibromyalgia in adults. Cochrane Database Syst Rev. 2012 Feb 15;2:CD009318. doi: 10.1002/14651858.CD009318.pub2.
Moore RA, Straube S, Wiffen PJ, Derry S, McQuay HJ. Pregabalin for acute and chronic pain in adults. Cochrane Database of Systematic Reviews 2009, Issue 3. Art. No.: CD007076. DOI: 10.1002/14651858.CD007076.pub2
Moore R, Wiffen PJ, Derry S, Toelle T, Rice AS C. Gabapentin for chronic neuropathic pain and fibromyalgia in adults. Cochrane Database of Systematic Reviews 2014, Issue 4. Art. No.: CD007938. DOI: 10.1002/14651858.CD007938.pub3
Price MJ. Levetiracetam in the treatment of neuropathic pain: three case studies. Clin J Pain. 2004 Jan-Feb;20(1):33-6.
Wiffen PJ, Derry S, Moore RA, Aldington D, Cole P, Rice AS, Lunn MP, Hamunen K, Haanpaa M, Kalso EA. Antiepileptic drugs for neuropathic pain and fibromyalgia - an overview of Cochrane reviews. Cochrane Database Syst Rev. 2013 Nov 11;11:CD010567. doi: 10.1002/14651858.CD010567.pub2.
Wiffen PJ, Derry S, Lunn MPT, Moore R. Topiramate for neuropathic pain and fibromyalgia in adults. Cochrane Database of Systematic Reviews 2013, Issue 8. Art. No.: CD008314. DOI: 10.1002/14651858.CD008314.pub3
http://www.painhq.org/learning/knowledge-base/category/treatments/traditional-medicine-and-surgery/anticonvulsants

DO GUT BACTERIA SWAY OUR FOOD CHOISES

It sounds like science fiction, but it seems that bacteria within us -- which outnumber our own cells about 100-fold -- may very well be affecting both our cravings and moods to get us to eat what they want, and often are driving us toward obesity

In an article published this week in the journalBioEssays, researchers from UC San Francisco, Arizona State University and University of New Mexico concluded from a review of the recent scientific literature that microbes influence human eating behavior and dietary choices to favor consumption of the particular nutrients they grow best on, rather than simply passively living off whatever nutrients we choose to send their way.

Bacterial species vary in the nutrients they need. Some prefer fat, and others sugar, for instance. But they not only vie with each other for food and to retain a niche within their ecosystem -- our digestive tracts -- they also often have different aims than we do when it comes to our own actions, according to senior author Athena Aktipis, PhD, co-founder of the Center for Evolution and Cancer with the Helen Diller Family Comprehensive Cancer Center at UCSF.

While it is unclear exactly how this occurs, the authors believe this diverse community of microbes, collectively known as the gut microbiome, may influence our decisions by releasing signaling molecules into our gut. Because the gut is linked to the immune system, the endocrine system and the nervous system, those signals could influence our physiologic and behavioral responses.

"Bacteria within the gut are manipulative," said Carlo Maley, PhD, director of the UCSF Center for Evolution and Cancer and corresponding author on the paper." "There is a diversity of interests represented in the microbiome, some aligned with our own dietary goals, and others not."

Fortunately, it's a two-way street. We can influence the compatibility of these microscopic, single-celled houseguests by deliberating altering what we ingest, Maley said, with measurable changes in the microbiome within 24 hours of diet change.

"Our diets have a huge impact on microbial populations in the gut," Maley said. "It's a whole ecosystem, and it's evolving on the time scale of minutes."

There are even specialized bacteria that digest seaweed, found in humans in Japan, where seaweed is popular in the diet.

Research suggests that gut bacteria may be affecting our eating decisions in part by acting through the vagus nerve, which connects 100 million nerve cells from the digestive tract to the base of the brain.

"Microbes have the capacity to manipulate behavior and mood through altering the neural signals in the vagus nerve, changing taste receptors, producing toxins to make us feel bad, and releasing chemical rewards to make us feel good," said Aktipis, who is currently in the Arizona State University Department of Psychology.

In mice, certain strains of bacteria increase anxious behavior. In humans, one clinical trial found that drinking a probiotic containing Lactobacillus casei improved mood in those who were feeling the lowest.

Maley, Aktipis and first author Joe Alcock, MD, from the Department of Emergency Medicine at the University of New Mexico, proposed further research to test the sway microbes hold over us. For example, would transplantation into the gut of the bacteria requiring a nutrient from seaweed lead the human host to eat more seaweed?

The speed with which the microbiome can change may be encouraging to those who seek to improve health by altering microbial populations. This may be accomplished through food and supplement choices, by ingesting specific bacterial species in the form of probiotics, or by killing targeted species with antibiotics. Optimizing the balance of power among bacterial species in our gut might allow us to lead less obese and healthier lives, according to the authors.

"Because microbiota are easily manipulatable by prebiotics, probiotics, antibiotics, fecal transplants, and dietary changes, altering our microbiota offers a tractable approach to otherwise intractable problems of obesity and unhealthy eating," the authors wrote.

The authors met and first discussed the ideas in the BioEssays paper at a summer school conference on evolutionary medicine two years ago. Aktipis, who is an evolutionary biologist and a psychologist, was drawn to the opportunity to investigate the complex interaction of the different fitness interests of microbes and their hosts and how those play out in our daily lives. Maley, a computer scientist and evolutionary biologist, had established a career studying how tumor cells arise from normal cells and evolve over time through natural selection within the body as cancer progresses.

In fact, the evolution of tumors and of bacterial communities are linked, points out Aktipis, who said some of the bacteria that normally live within us cause stomach cancer and perhaps other cancers.

"Targeting the microbiome could open up possibilities for preventing a variety of disease from obesity and diabetes to cancers of the gastro-intestinal tract. We are only beginning to scratch the surface of the importance of the microbiome for human health," she said.

The co-authors' BioEssays study was funded by the National Institutes of Health, the American Cancer Society, the Bonnie D. Addario Lung Cancer Foundation and the Institute for Advanced Study, in Berlin.

How Do Clinical Studies Work Vid

Today's animated video produced by Roche, looks at how clinical studies work. It's short and to the point and gives a little more information regarding clinical trials and studies. As neuropathy patients, we are used to the next 'hopeful treatment' being announced and entering the trial stages but we rarely think about what sort of process that is. Because it can be a very long process, the initial excitement at hearing of a potential new discovery can very quickly wear off and lead to frustrations that nothing is being done but there is little doubt that trials and studies are vital to ensure safety and achieve the necessary proof that something is what it says it is.

Drawn to Science: Clinical trials  
Published on 28 May 2014

Clinical trials are essential to providing the scientific data to determine whether new drugs, diagnostics or procedures are both safe and effective when used to diagnose and treat people.

Carefully conducted clinical trials are performed in human volunteers to provide answers to important questions. Every new treatment is usually tested in three phases of clinical trials before regulatory agencies consider it safe and effective. Depending on product type and development stage, investigators initially enroll volunteers and/or patients into small pilot studies and subsequently conduct progressively larger scale comparative studies. As positive safety and efficacy data are gathered, the number of patients typically increases. Clinical trials can vary in size, and can involve a single research entity in one country or multiple entities in multiple countries.

For more information about clinical trials at Roche visit http://www.roche.com/research_and_dev...


 https://www.youtube.com/watch?v=5zXuON7Rueo

What Can I Do About Pain Related Fatigue

Today's post from webmd.com (see link below) may seem like another simplistic self-help post, aimed at  the general public rather than those living with chronic pain but the fact is that many many people living with neuropathy are often desperately tired. Either from the constant pain, or from weakness caused by over-activity that others would see as normal, it doesn't really matter. The point is, what can we do about it, if anything? Some of the tips shown below may well be helpful for you but as long as you're aware of the problem, you're more likely to take steps to help it. One thing is sure; without regular and quality sleep periods, your whole day will be affected by tiredness - don't be ashamed to take naps when necessary and when your body tells you too. Far too many articles stress the need for exercise and activity and they are indeed helpful for neuropathy patients (however you may protest) but rest and recovery are equally important.
 

Why Am I So Tired?
WebMD Feature Reviewed by Jennifer Robinson, MD

Are you always tired? That’s no surprise in these tightly scheduled, overloaded times.

The good news is, it’s simpler than you might think to get your energy back. The trick is to figure out why you’re fatigued. Then you can learn what to do about it. 

5 Common Reasons for Tiredness

1. What you eat. A shot of caffeine and sugar can seem like quick fix when you need an energy boost, but it soon makes things worse. After your blood sugar levels spike, they crash. You end up more fatigued, not less.

A far better solution is a balanced diet full of fruits, vegetables, and lean protein.

“Most people feel like they're less tired if they eat a healthy diet," says J. Fred Ralston Jr., MD. He's a past president of the American College of Physicians. "Eating healthy also means you'll carry less weight, and obesity is a big contributor to fatigue.”

2. How much water you drink. Instead of that caffeine-filled, sugary drink, try a glass of water.

Mild dehydration affects your mood, and it makes you feel more tired, research shows. It can set in when you drink just a little less H20 than you normally do.

The Institute of Medicine recommends that men get about 125 ounces of water a day and women get 91 ounces. Those amounts include water from all foods and beverages.

3. How much you sleep.

Millions of Americans just don’t get the ideal 7 to 9 hours of snooze time. If you’re one of them, avoid caffeine, alcohol, and large meals in the hours just before bedtime. Turn off the TV and unplug the computer before you turn in. Also, go to bed at the same time each night and keep your bedroom quiet and dark.

4. How much you exercise. Studies show that when inactive people start to work out, they feel much less fatigue than those who stay idle. When you move more, you not only use more energy, you also have more on a daily basis.

Ralston recommends you start with 30 minutes of exercise at least 4 days a week. Be sure to finish at least 3 hours before bedtime, so you have time to wind down. After a month, you should notice improvement in your fatigue. Within 3 to 6 months, you should feel much better.

5. What you do to handle stress. Stress is a fact of life. Fatigue sets in when you have more than you can handle. The first step in changing the way you deal with stress is to figure out your body’s stress signals -- aside from feeling fatigued, you might be angry, headachy, tense, or unable to focus.

Once you know how stress affects you, you can teach yourself to control it. Proven ways to limit the toll stress takes on you include:

Short, regular periods of meditation
Talks with friends or family about your challenges
Regular breaks from work
Taking time for yourself
Could It Be Something Else?

If you’ve taken steps to address all five of the most common causes of fatigue and you still feel worn out, visit your doctor.

Chronic tiredness is linked to medical conditions including these:

Anemia, or a lack of iron in the blood, is a common cause of fatigue, and it's easy to check with a simple blood test, says Sandra Fryhofer, MD. She's an associate professor of medicine at Emory University.

"It's particularly a problem for women, especially those who are having heavy menstrual periods,” she says.

An iron-rich diet that's heavy in meats and dark, leafy greens can correct low levels of iron. Ask your doctor if an iron supplement might help, too. Other key nutrients that can hold off fatigue include potassium and vitamins D and B12.

Thyroid problems. Both an over- and an underactive thyroid can cause fatigue. A blood test can help a doctor gauge how well your thyroid's working.

Diabetes. People who have uncontrolled diabetes "just plain don't feel good," Fryhofer says. "If you feel draggy and you're also having blurred vision or lots of urination, you should get that checked with a blood test."

Depression. If your feelings of exhaustion are accompanied by sadness and loss of appetite, and you just can't find any pleasure in things you once enjoyed, you might be depressed. Don't keep it to yourself. Your doctor, or a therapist, can start you on the path back to feeling better.

Sleep problems. Many different sleep issues can keep you from feeling rested and energized. Talk to your doctor about a sleep evaluation, especially if you snore, since that could point to a condition called obstructive sleep apnea, which briefly stops your breathing several times a night. Like other sleep disorders, it’s treatable.

Undiagnosed heart disease. Ongoing tiredness can be a warning sign of heart trouble, Ralston says. “If you have trouble with exercise you used to do easily, or if you start feeling worse when you exercise, this could be a red flag for heart trouble. If you have any doubts, see your doctor.”

http://www.webmd.com/fitness-exercise/features/reasons-tired

What Do You Mean You Have Chronic Neuropathic Pain

Today's post from lifeinslowmotionblog.com (see link below) looks at a dilemma which faces us all when confronted by disbelieving or ignorant faces that don't have a clue what we're on about when we go on about neuropathic symptoms. It's human nature - people match what they hear our pain involves, with what they have experienced in their own lives. Only we know how different neuropathic pain is and how much it can influence our daily lives for the worse. The article talks about a 'communication dilemma' and indeed that's exactly what it is. Just explaining that 'chronic' pain is not a measure of how severe the pain is but a description of something that just never goes away, (chronic meaning, long-lasting) is difficult enough. This article attempts to put the problem into context and help us feel better about the situation when it comes to dealing with other people's opinions.

Explain Your Pain: The Communication Dilemma
Posted on July 30, 2015 by lifeinslowmotion

Hi Folks, I’m starting a new series called “Explain Your Pain” which will attempt to address the difficulty of explaining our chronic pain to our family, friends, and others who need to be in the know. In this first post “The Communication Dilemma” I lay out the problem, and in future posts I will give some thoughts on how to move productively move forward to explain our pain.

Something about chronic pain is mind-numbingly difficult to describe. Something about describing our chronic pain experience leaves us feeling ashamed, alone, and misunderstood. If you struggle to explain your chronic pain to family, friends, and loved ones, you are not alone.

We all have memories of those tongue-tied moments, those seconds that stretched into minutes, as we sifted through our brains to try and find the right words. The words never seem to come.

We all have those relationships that are just not the same, because we have never been able to find the right words to explain why we have suddenly become so unreliable, always cancelling plans.

We all have those tear-stained memories of feeling so misunderstood and so judged that we are unsure if we will ever talk to that one friend again.

We can all remember conversations that were intended to bring clarity and understanding but somehow ended up only adding to the overall confusion.

If you have chronic pain, you are familiar with this communication dilemma. You are familiar with the gap that exists between our intimate experience of chronic pain and how much our family and friends know about our daily experience. You are familiar with the gap, but so far have been unable to bridge it. So far, words have fallen short.

What about chronic pain is so impossible to describe and so difficult to comprehend? Why do conversations about chronic pain feel unnatural? Why is this communication dilemma a common and overarching theme in the lives of so many who struggle with chronic pain? Perhaps if we can begin to answer these questions, we can figure out how to move forward in this quest to explain, in this journey to be known.

Describing chronic pain is difficult because it requires that we put objective and concrete words to a subjective and abstract experience.

At first glance, chronic pain appears to be a tangible and physical experience, but this is not the full story. Our chronic pain is certainly physical, and it feels concrete to the one who experiences it, but in a somewhat paradoxical sense, it is also incredibly subjective and abstract.

Why? These paradoxical qualities exist simultaneously because of the discrepancy between what we experience and what the people around us see.

Chronic pain is tangible to the person who feels it, but abstract to the person who cannot see it. We are the only one who can feel our own pain, and depending on the type and severity of our pain, those on the outside are often unable to see any tangible evidence of what we are experiencing. Because no one can see our pain, the question of whether the pain is real or as bad as we say lingers between our relationships and underlies all of our conversations. And so people wonder, in silence or out loud, “If it cannot be seen, is it actually there?”

Our pain cannot be seen and it cannot be objectively measured beyond a wildly inaccurate 1-10 scale that means something different for each person who uses it. Because it is a subjective experience that cannot be objectively measured, the word of the chronic pain fighter must be taken as true despite no apparent evidence to confirm.

Because there is often no evidence of what we experience, our pain behaviors and responses to our pain are used to confirm our lack of sanity instead of the presence of our pain. Our grimaces, limps, and our groans, as well as our decisions to spend all day lying on the couch or cancelling work in response to something that is invisible are used to prove that we are exaggerating, crazy, or seeking attention, instead of serving as evidence for our pain.

Describing chronic pain is difficult because society has little understanding of the difference between acute and chronic instances of pain.

The terms “acute” and “chronic” as used to describe pain are not a part of our societal vocabulary. And because these important descriptive words have not become ingrained in our vocabulary, people tend to think that pain is simply pain.

When people believe that all pain is the same, this poses a huge problem, because most peoples’ experiences of pain are of the acute variety. When people hear the word “pain,” they then draw on their own experience of acute pain to understand our experience of chronic pain. They make the grave mistake of assuming that chronic pain and acute pain are more alike than they are unalike.

But all pain is not created equal. All pain is not the same. Chronic pain is vastly different than the more common experience of acute pain.

Chronic pain is a continuous and unrelenting experience, vastly different from acute experiences of pain. While acute pain has purpose, alerting us to bodily damage, chronic pain is often purposeless, our body’s pain system run amok. It is poorly understand that pain over time becomes magnified a hundred fold because of how it must be dealt with continuously and with no hope of a break. The hope that exists when pain is acute, that hope that the pain will one day go away gives strength to persist and keep going. However, this same type of hope for physical relief is not present when pain becomes chronic and may not ever go away.

Describing chronic pain is difficult because our pain is unpredictable and transforms over the course of an ever-changing story.

Our chronic pain is shifting and ever-changing. We feel one way on Monday and a different way on Tuesday. The intensity, quality, and presentation of our pain vary throughout the days, weeks, months, and changing seasons. New symptoms come and go. Old symptoms worsen and intensify. We have flares, relapses, setbacks, and periods of relative calm.

Because our pain is always changing, keeping people updated on our condition requires a continuous conversation. We cannot explain our pain one time and expect people to understand. With each new season, we have to supply updates and new information.

Our chronic pain is paradoxical and contradictory. It is a complex and multifaceted experience that is many times confusing even to those who experience it. If we don’t fully understand our own chronic pain, how can we explain it to others? We don’t know what triggers our pain or where that last flare came from. We don’t know how to explain why we felt good on Monday and bad on Tuesday, because we are unsure of the reasons ourselves. Oftentimes we are unsure if or how our various symptoms connect, and oftentimes we do not have a clear diagnosis. When we are dealing with conditions that we have a hard time explaining ourselves, we will struggle even more to convey what we do know to the people around us.

Describing chronic pain is difficult because long-term and unrelenting suffering makes people uncomfortable and sometimes people do not want to know.

Sometimes people do not want to understand our pain. Listening does not come naturally to people, and this is especially the case when the topic is one that makes people uncomfortable. Unrelenting suffering that may never go away makes people uncomfortable because they are unable to fix our problem or give us effective advice. Unrelenting suffering makes people uncomfortable because it inconveniences them and because when we suffer, oftentimes the corner edges of our suffering will affect them as well.

Sometimes describing our chronic pain is difficult because people do not want to listen long enough to fully understand. Sometimes people do not want to listen long enough to understand because our suffering makes people feel uncomfortable and they are unsure how to respond.

Describing chronic pain is difficult because we are too exhausted to keep explaining.

Because our pain is complex, confusing, and contradictory, it takes great energy to explain and keep people up to date. At times we feel able to explain our pain, but we choose not to because we want to save our precious energy for more important things. The physical effects of our chronic pain wear us down and exhaust us. We must carefully decide how we will use our small pool of energy, and sometimes explaining our pain doesn’t seem like a worthy enough endeavor.

For all of these reasons, we eventually reach a state in which we are no longer willing or able to attempt these difficult conversations. And over the years, we tend to move towards one of two tactics.

Instead of seeking to explain our pain, we start to complain about our pain.

We become so hardened and bitter towards those who never seem to want to understand that we move into angry and bitter complaining. Our attempts at productive conversations seem pointless, so instead we move towards ceaseless complaints of how horrible our pain is. Often this turns into a downward spiral as we push people further away, and confirm everyone’s beliefs that perhaps we really are crazy, exaggerating, and attention-seekers.

Instead of seeking to explain our pain, we burrow inward, shutting everyone out, living in silence.

Many of go into hiding. Explaining our pain has become such an exhausting and futile effort that we begin to live out our chronic pain in secret, hiding how much pain we are actually experiencing. Over and over again, we plaster a smile on our faces, pretending that everything is ok, when it is far from ok. We stop explaining because we are exhausted and need every drop of our strength to fight this pain that haunts us.

There is a third option. It is possible to move out of our silence without moving into unhelpful complaining. It is possible to successfully explain our pain. Most of our past conversations were unsuccessful because of the simple fact that we were not prepared, and I believe it is possible to prepared. Once we begin to understand the nature of our chronic pain ourselves, we will better know what topics are important to convey to other people. It is possible to speak the truth about our pain with confidence. It is possible to speak about our pain in a way that will enable others to truly understand.

Once we are prepared, explaining our pain will no longer be a hopeless endeavor.

Stay tuned!

http://www.lifeinslowmotionblog.com/explain-your-pain-the-communication-dilemma/

Why Do I Have Neuropathy A Personal Story

Today's relatable post from americannewsreport.com (see link below) is a very recognisable account of the way that neuropathy can take us by surprise when it arrives. You will undoubtedly recognise many of the experiences the author has gone through and sympathise with the frustrations that the disease can bring. Worth a read, if only because you may be reassured that you're not alone feeling the way you do, although at times it may feel like it.

My Story: Why Do I Have Peripheral Neuropathy?
October 13th, 2014 by Ed Coghlan
 
When we started the National Pain Report a couple of years ago, we had a pretty good idea that it was going to be successful. From prior work that I had in the field of chronic pain, I knew that pain patients were often frustrated about the lack of information that is available to them and how they are treated by the medical community.

So we figured we’d find an audience.

What I didn’t know at the time was that I was about to begin my own personal journey into chronic pain.

A couple of years ago, I was playing golf in Oxnard, California when I noticed that my feet were tingling — like I was walking with sand in my golf shoes — is how I would later describe to my doctor.

It didn’t hurt either my feet or the quality of my golf (such as it is) and I didn’t pay much attention to it. So I ignored it.

For much of the next year, I would get an episode or two, but it always receded and I never thought much about it. I never ever talked to my doctor about it.

Probably should have.

About a year ago, on a night before an important meeting I had in San Francisco, my body just went off. The tingling and numbness seemed to be everywhere in my body.

It didn’t hurt, but it was very unsettling.

So when I returned to Los Angeles, I began a journey I’m still on. To find out what the hell is the matter with me.

The first thing I did was what anyone born after World War II always does. I went to Google. It didn’t make me long to self diagnose.

I have peripheral neuropathy. It’s a tingling, burning and numbness that the Mayo Clinic compares to the loss of sensation that comes from wearing a thin stocking or glove.

There are a number of reasons for it — traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.

My father had diabetes and my grandfather had multiple sclerosis, so off to the doctor I went.

My family physician, who I’ve known for 30 years, ran a bunch of blood tests and said he didn’t see anything problematic. In fact he congratulated me on my blood chemistry. He referred to me a neurologist, who thought my blood sugar was a little high (101) — not diabetic high — but enough that he suggested I eat like a diabetic and try to lose some weight. .

I’m a physical fitness nut, so losing weight never seemed like something I needed to do, but in fairness and out of respect for the neurologist, I ate like a diabetic and lost 15 pounds in about two months.

So I looked better.

But the tingling remained, and sometime the burning is so intense that when I get home from work, I’ll put ice packs on my feet. When it’s especially severe, I feel it in my hands and my face.

He also gave me a nerve conduction test and told me to start taking Vitamin B-12, which I do. I’m also taking Gabapentin (the generic for Neurontin) and I honestly can’t say that it’s working all that well. I stopped taking it for a while. I’m taking it again, because, well, I have to do something.

I’ve gone back to my family physician and the neurologist in the past couple of months, and their diagnosis is the same — which is they’re not sure.

I had back surgery thirty years ago, have banged myself around pretty good on racquetball and basketball courts and hiking trails, and thought maybe something happened during that active life that might have pinched a never or something. They pretty much rejected that.

I’ve never been this unsettled about anything physically.

I have learned that often the cause of the peripheral neuropathy goes undiagnosed.

I don’t like living under the cloud of doubt.

It was Francis Bacon who said, “If a man will begin with certainties, he shall end in doubts; but if he will be content to begin with doubts, he shall end in certainties.”

I don’t think Bacon had peripheral neuropathy.

Ed Coghlan is the CEO of National Pain Report. He lives in southern California.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

http://americannewsreport.com/nationalpainreport/my-story-why-do-i-have-peripheral-neuropathy-8824993.html

Do We Have To Accept Chronic Neuropathy

Today's post from jennifermartinpsych.com (see link below) offers some wise words and advice about 'accepting' the fact that you may be living with chronic pain and by doing so, you somehow wave a magic wand that makes it all okay from that point on. Many self-help sites urge us to accept our chronic condition and that if we don't we're being unrealistic and somehow weak. This article however advises that we should indeed accept the reality of our situation but that doesn't mean giving in to it! Worth a read if you're having trouble resisting throwing bricks at the kids!

Accepting Chronic Pain: Is it Necessary? 
Jennifer Martin, Psy.D Clinical Psychologist PSY 27586 August 3, 2015

As published on Pain News Network (www.painnewsnetwork.com) on March 25, 2015

A patient of mine told me the other day, “I don’t think I will ever be able to accept my chronic pain. It has completely changed my life.”

I think this is something that most people with chronic pain contend with at some point in time; wanting to hold onto hope that their diagnosis isn’t chronic or not wanting to come to the realization that they will have to live with the pain forever.

When most people hear the word “acceptance” they equate it with the notion that they should feel that it’s okay or it’s alright to have a chronic condition. Many people don’t ever feel okay about having to live with pain or an illness for the rest of their lives. It is not something that is easy to get used to and it’s not fair.
Accepting chronic pain does not mean giving into it and it doesn’t mean that you stop looking for treatment.
Accepting chronic pain does not mean accepting a lifetime of suffering.
Accepting chronic pain does not mean you are never allowed to feel angry or sad.
Accepting chronic pain does not mean that you have to give up hope for the future.

When I use the word “acceptance,” I mean accepting the reality of your situation and recognizing that this new reality could be permanent. Those of us with chronic conditions may never like this reality and it may never be okay, but eventually it is necessary to accept it and learn to live life with it. It is the new norm with which we must learn to live.

Acceptance also involves making adaptations and alterations to our lives. We must find new things that bring us joy and we must have hope for the future.
Accepting chronic pain means learning to live again.
Accepting chronic pain means advocating for ourselves and our health so that we can be as healthy as possible.
Accepting chronic pain means learning our limits and learning to cope with feelings of guilt when we have to say “no.”
Accepting chronic pain means being able to look at your diagnosis as something you have, not who you are. Your condition does not define you.
Accepting chronic pain means re-evaluating your role as a husband/wife, mother/father, etc. as well as your life’s goals -- and figuring out how you can maintain these roles and attain your goals with your chronic condition.

For many of us, learning to accept our chronic condition isn’t easy. It is a learning process with a lot of ups and downs. It is something we may resist and something we may think impossible. It is difficult to accept something that has completely changed our lives and possibly the direction we thought our life was going to take.

Why is it necessary to accept your chronic condition?

Once you are diagnosed with a chronic condition, it will be always be with you. The sooner you are able to begin the process of acceptance, the sooner you will be able to learn exactly how to live with it. It is also how you will learn to cope.

Accepting chronic pain means learning to live life in a different way than before your diagnosis. It means learning to pace your activities, educating yourself, taking your medications, advocating for yourself, and surrounding yourself with support. It also means accepting that some aspects of your condition are out of your control.

Chronic pain can be unpredictable. There may be days when you feel in control of your pain and you are able to accomplish everything you would like to. There may also be days when your pain is unbearable, you feel angry about your situation, and all you can do is rest. Accepting your chronic pain means adjusting and adapting to the ways in which your life is different now that you may be living with this kind of unpredictability.

Your life may never go back to what it was prior to your chronic pain. But that doesn’t mean you can’t live a happy, successful, hopeful life with pain. Learning to accept your chronic pain can help you get there.

http://www.jennifermartinpsych.com/yourcolorlooksgoodblog/2015/8/3/accepting-chronic-pain-is-it-necessary