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

Suicide And Chronic Neuropathic Pain

Today's post from psychologytoday.com (see link below) covers a very serious topic concerning people living with chronic pain (and that includes millions of neuropathy patients) and that is the risk that the stress becomes so great that the only option is suicide. People try to link suicides of this nature to the so-called 'opioid addiction crisis' but that is way too simplistic. Anyone living with non-stop, chronic, nerve pain will tell you that there are times when things seem so bleak that thoughts naturally go towards ending it all. Were it not for opioid (and many other) drug treatments, suicide statistics would be much much higher than they are. At the moment, there aren't any trustworthy statistics about exactly how many people commit suicide because of the pain they're in but it's likely that the problem is much greater than imagined and deserves some serious research and study. This article highlights the problem in an intelligent way.

A Nation in Pain: Chronic Pain and the Risk of Suicide
 Judy Foreman Posted Nov 24, 2015

Chronic pain significantly increases the danger.

This fall's grim report about rising suicide and overall death rates among white, middle-aged Americans contains a slim silver lining. Here it is:

The new analysis by two Princeton economists, Anne Case and Angus Deaton, suggests that chronic pain — and the opioids used to treat it — may be a key driver of the rising deaths. While the “noisy” opioid epidemic has garnered near-daily headlines across the country for several years now, the equally horrible but silent epidemic of chronic pain has not yet broken through into the nation’s consciousness. Maybe things are beginning to change.

Many people still don’t realize it, but 100 million American adults live with chronic pain, many of them with pain so bad it wrecks their work, their families, their mental health and their lives.

There are no hard data on how many people with chronic pain die by suicide every year. But there are inferences. The suicide rate among people with chronic pain is known to be roughly twice that for people without chronic pain.

Since there are 41,149 suicides every year in the U.S., according to the National Center for Health Statistics, it’s possible that many of these suicides are driven by pain. Not proven fact, but plausible hypothesis. This would suggest that perhaps as many 20,000 or more Americans a year with chronic pain kill themselves, which would be more than the government’s tally of 16,235 deaths from prescription opioids every year. According to a CDC spokeswoman:

In 2013, there were 8,257 deaths that involved heroin and 16,235 deaths that involved prescription opioids. These categories are not mutually exclusive: if a decedent had both a prescription opioid as well as heroin listed on their death certificate, their death is counted in both the heroin as well as the prescription opioid death categories.

The truth, of course, is devilishly difficult to figure out with any certainty. Many people in severe, chronic pain have, and should have, opioids available. But unless they leave a suicide note it’s virtually impossible to tell if they overdose on purpose or accidentally. That’s in stark contrast to a pain patient who ends his or her life using a gun. That’s clearly a suicide, with or without a note.

In the course of researching my 2014 book on chronic pain, I heard many grisly stories. One Salt Lake City truck driver I interviewed would be dead today if his wife hadn’t walked in on him with a gun in his mouth. He had been in severe headache pain and after many visits to the ER, was repeatedly dismissed as a drug seeker, even without a medical workup. (Eventually, he was diagnosed with two brain aneurysms, bulging weak spots in a blood vessel).

I also heard about a surgeon with shingles who could find no relief for his pain and took a scalpel to his back in an attempt to dig out the painful nerves; he wound up in his own ER — as a patient. I heard of another man with ophthalmic shingles who finally shot himself because of unrelieved pain. A Boston surgeon I met was on the verge of suicide due to unrelenting pain from a rare autoimmune disease.

The anecdotes go on and on. Unfortunately, from a statistical point of view, they are just anecdotes. And unlike opioid abuse deaths, the stories of these and other pain patients rarely make the headlines.

Nor do these cases routinely make it into the reports of medical examiners and coroners, according to Utah pain specialist Dr. Lynn Webster, writing in a recent issue of Pain Medicine News.

In this fall's Princeton study, the lead author, Anne Case, was particularly interested in the role poor health might play in suicide because, as she told The New York Times, she herself has suffered for 12 years from disabling and untreatable lower back pain. In her research, Case discovered that middle-aged people, unlike the young and unlike the elderly, were reporting more pain in recent years than in the past. One-third of people in this group had chronic joint pain in recent years and one in seven reported sciatica.

The dismal situation with chronic pain — and the potential link with suicide — is unlikely to improve until the federal government takes the pain epidemic seriously. While the government spends $2,562 on research for every person with HIV/AIDS, it spends only $4 for every person with pain.

Clearly, chronic pain needs more attention and more research dollars. After all, it is the main reason Americans go on disability.

And it appears to be driving growing numbers of Americans to kill themselves.

(Originally posted on WBUR’s CommonHealth)

https://www.psychologytoday.com/blog/nation-in-pain/201511/chronic-pain-and-the-risk-suicide

Chronic Illness And Exercise

Today's post from myneuropathyandme.blogspot.com (see link below) is written by the same author as yesterday's post and talks about the difficulties neuropathy patients face when they are told they need to exercise. It tells of her own personal experiences with exercise and gives some very sensible tips on how to set about it. We know we have to exercise but we also know our body is going to give us hell for doing it, so the trick is to find easier ways of exercising without putting too much stress on our feet, legs, arms or wherever the neuropathy is most evident.

Exercising with a Chronic Illness
Posted by Tracy Love Thursday, June 6, 2013

Everyone who is suffering with a chronic illness or even pain has heard the doctor say that exercise is good; in fact, most of us knew that, even before the doctor told us that we need to exercise. Before I was so lucky to be diagnosed with Small Fiber Neuropathy, I exercised six days a week for at least an hour a day. I was extremely active and loved being in the Phoenix sun, even when it was 110 degrees outside, I could find an exercise I could do to keep me moving. From walking, hiking the Phoenix Mountains, water aerobics, training for marathons, biking, whatever it was, I loved it. I began working out in 2006 when I joined Weight Watchers to lose 170lbs. I did a lot of exercising a loved every minute of it.

Having Small Fiber Neuropathy and all the different drug trials and fails has put weight back on my body. I cried for the first six months as I got on the scale. I worked so hard to lose the weight, now I was watching it creep back on. But, my sweet husband told me not to worry that one day I will get back there, but my health was more important than a size 10 jean. Then he said "I love you." I think I'll keep this man :-)

Doctors tell us that we need to exercise to improve our heath, I will agree, but it’s not the wanting to exercise, it’s the inability to handle the pain the exercise puts on our chronically ill bodies that matters. I have found over the past year a solution. I think just walking is enough? Like, walking through the aisles at the grocery stores, the malls, parking lots, doing everyday chores such as laundry, sweeping and mopping floors, and cleaning bathrooms. To me this is enough to get my heart racing. Not as much as when I was training for half marathons, but at least my body is moving. But if you want to start exercising, I say start slow. Start with ten minutes a day and work your way up to thirty minutes a day. If ten is too much, break it into six five minute intervals. We all know that exercising will most likely hurt tomorrow, but we are always hurting tomorrow, and I know I am we willing get my body moving again.

There is an article on exercising and nerve pain that states "For many of us, exercise hurts. We often equate athletics with muscle aches, stomach cramps, sore knees, and tired lungs. But, for those with neuropathic pain, exercise can offer a rare refuge from agonizing discomfort." Click here for article

Now that the weather is warmer and my pool has heated up enough, I got back in to workout by doing water aerobics. I love working out in the pool. The water is cool enough so I don’t sweat and overheat and my muscles and joints aren't paying the price like the pounding pavement. Did you know that jogging in the pool is twelve times more the resistance as walking on land? And it doesn’t hurt while doing it. Yes, sometimes it does hurt the next day, but I love exercising in the pool. I can do a 30 minute workout in the cool water and I burn up as many calories as walking 30 minutes in the hot sun.

There are times though that I have to give my body a little pep talk. “Ok, body, we’re going out there and we’re going to give it our all. Yes, you’ll feel some pain, maybe while working out, maybe it won’t happen until later or even tomorrow, but we’re going to move today, so let's not be lazy, let's get moving!” I am tired of this disease having all the control. There is nothing I have experienced in my life that is more aggravating than telling my body to do something and it only does it half way. I now use a shower chair to take showers because it hurts to stand and I get dizzy while showering. There’s nothing scarier than thinking I’m going to get dizzy, fall down in the shower and having the fire department come rescue me. If I weighed 60lbs less, I wouldn’t worry too much HA! So the shower chair helps alleviate any of those nightmares. Trying to even wash my hair brings on added pain in my hands and arms. I wonder how many calories I burn from doing this. And can I count it as moving?

I can’t say what exercise is right for your body, but I do know that moving is right no matter what you’re doing. Try working out in the pool if you have access to one. If you don’t, maybe join the YMCA or a gym that has a pool. Bake some cookies and bribe your neighbor to use their pool. If you own a dog, a little walk after dinner is good for both of you, even if it's just five minutes Fido will love whatever you can give him.

I need to accept for myself that it’s going to be a long journey to get back to where I once was weight wise, and maybe I will never be a size 10 again, but I can be healthy. That’s what exercise is all about anyways, to be heart healthy. I also understand I’m going to have setbacks, flare ups and struggles on my journey. I have set a goal to workout at least twice a week if possible. I need to be patient, understanding, and listen to my body as I move forward. I want to reconnect with my body and tell it who’s the boss instead of the other way around. This will also help me to become stronger, physically and mentally. Summer is here and my pool is ready to jump in and start jogging, jumping, twisting, bending and swimming. I’m ready, are you?

http://www.myneuropathyandme.blogspot.com/

Chronic Inflammatory Demyelinating Polyneuropathy CIPD More Than Meets The Eye

Today's post from hillandponton.com (see link below) has a long title, describing a severe form of neuropathy called chronic inflammatory demyelinating polyneuropathy but in fact, the content applies to practically everyone who suffers from neuropathy and in that respect, is a useful description of what neuropathy entails. The title is also a long-winded description of the form of nerve damage that many people suffer from but is more often called peripheral neuropathy, or just neuropathy. CIPD involves damage to the myelin sheath insulating the nerves but this also applies to most cases of peripheral neuropathy. However, it also suggests that the standard protocol for CIPD neuropathy treatment involves just three components: IVIG (intravenous immunoglobulin); Corticosteroids and plasma exchange. That this is misleading is an understatement. Treatment for CIDP is much wider than that and is certainly not limited to those three options as most patients will know. It's difficult to see where the author has got her information from and from what angle she's approaching the subject but this article is an example of how you need to be careful not to jump to conclusions from just reading one source of information.

What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?
 March 6, 2017/in Veterans /by Brenda Duplantis, Accredited Claims Agent

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by gradually increasing sensory loss and weakness associated with the loss of deep tendon reflex in the legs and arms. The hallmark of a peripheral nerve disease is loss of ankle reflex. This is when your doctor hits your Achilles tendon and there is no reflex.

CIDP is a progressive motor and sensory neuropathy that is very painful and debilitating. CIDP is caused by damage to the covering of the nerves, called myelin.



The axon (nerve fiber) works like an electric wire. The myelin sheath around the axon is the insulation necessary for the nerve to conduct electrical impulses properly. In CIDP, myelin is attacked through very complex mechanisms. In such cases, the body sees the peripheral nerve as foreign and antibodies bind to the myelin and begin to break it down. In people with CIDP, this translates into symptoms. For example, if you want to move your finger, messages tell your brain to move the finger. Then electrical communication within your body tells your nerves and muscles to move the finger. When there is disruption in the myelin sheath, those messages are weakened. Your brain is telling your finger to move but the nerves are damaged and the movement is weakened, delayed, or absent. When the myelin sheath is completely damaged, the message is blocked and this is called paralysis.

The disease can be present in a person for years prior to diagnosis. Because it is a gradually progressing disorder and its symptoms may, at early stages, wax and wane, a definitive diagnosis may require invasive tests. However, a neurologist that has experience in this type of disease should be able to identify the gradual symptoms and rule out any other cause. Typically, a diagnosis of CIDP is based on the person’s symptoms. Common symptoms in CIDP patients include:

In extremities:
 
Pain
Tingling
Numbness
Weakness
Loss of deep tendon reflex
Foot drop
Difficulty walking (altered gait, stumbling)
Fatigue

In addition to the aforementioned symptoms, tests such as a nerve conduction study (NCS) and electromyography (EMG) – a diagnostic procedure to assess the health of muscles and the nerve cells that control them – may be administered to determine the extent of demyelinating disease. In demyelinating disease, there is damage to the lining of the nerves that are critical for electrical nerve conduction. This can be confirmed by EMG studies or nerve biopsy. A nerve biopsy is used to confirm inflammatory process in the patient’s nerve.

A spinal fluid analysis is another diagnostic test that helps determine if a patient has elevated protein with normal cell count, an abnormality found in CIDP patients. Finally, your doctor may order blood and urine tests to rule out other disorders that may cause neuropathy, such as diabetes, which is the number cause of peripheral neuropathy.

The therapy for CIDP includes these three primary protocols:
 
IVIG (intravenous immunoglobulin used to treat various autoimmune, infectious, and idiopathic diseases) – can aggravate kidney dysfunction, cardiovascular disease, cerebrovascular disease, and other.
Corticosteroids (oral prednisone, pulse oral dexamethasone, IV methylprednisolone) – often improve strength, are conveniently taken by mouth, and are inexpensive. Side effects, however, can limit long-term use.
Plasma exchange – a process by which some of the patient’s blood is removed and the blood cells returned without the liquid plasma portion of the patient’s blood. It may work by removing harmful antibodies contained in the plasma. Short-term relief.

If treated early, most CIDP people respond well to therapy that can reduce the damage to peripheral nerves and contribute to improved function and quality of life. If left untreated, 30% of CIDP patients will progress to wheelchair dependence.

https://www.hillandponton.com/cidp/

The Pitfalls Of Caring For Someone In Chronic Pain

Today's post from paincommunity.org (see link below) is a very useful article describing how difficult it can be to be a care giver for someone living with chronic pain. As many of you will know, neuropathy pain can reduce the quality of someone's life dramatically but not only the patient suffers. Their family and friends and the person who has had the responsibility of primary care thrust upon him or her, has to learn to adapt to a whole new relationship scenario and that can be very difficult indeed. Via the writer's own personal experiences, this article sums up the main problems and gives some hints as to how to learn to cope. Certainly worth a read if you're in that position, either as patient or carer.

“Angry, Sad and Frustrated”– The Unspoken Feelings of a Caregiver
Posted by Jim Stemple | March 19, 2014

As a caregiver to a very special lady for the last 20+ years I have learned it is ok to be angry and frustrated. This understanding did not come overnight.
Here is what I learned.
 
1: Chronic pain comes along and turns the lives of everyone involved upside down. Everything you knew is no more. Your life isn’t your life anymore, it is now a life filled with uncertain days and nights. You see the pain doesn’t only affect the person living with pain, it affects all those around them. It affects the whole household and those close to them outside the home. I may not live with chronic pain myself but I do live with someone who does and I am affected on so many different levels.

All the plans you had made for the future are put on hold or forgotten about. You find that each day life can and does throw something new at you and your loved one. It can be breakthrough pain, it can be a new health issue, insurance problems, finding a provider or just plain old frustration that threatens to blow the top of your head off.

The stress of not being able to know from day to day what the pain is going to decide to do to your loved one is over-whelming some days. As a caregiver you constantly worry what each day will bring.
 
2: Sometimes the one who is living with pain doesn’t realize how much it affects those around them. You see they are so consumed with trying to deal with the pain each day that sometimes they forget about the ones around them. The one living with pain will feel as if their partner/ caregiver doesn’t care enough, is angry at them or doesn’t believe that they “really have pain”.

But you know, it isn’t that at all. We, as caregivers, are pulled in so many directions that sometimes we think our heads may spin off of our necks. We do not know if we are coming or going—I know that I have felt that way.

3: For many partners/caregivers the financial stability of the family is always on your mind. For some families you lose the 2nd income that you were dependent on when your loved one is no longer able to work due to the pain. This can and does cause much discomfort and friction within the family. You don’t lay the blame on your loved one because they are unable to work but you cannot help but to feel frustrated at what the pain has done to your family and your dreams.

So what is the secret to success?

Over the years I have found that the most important thing is to communicate. It is ok for the caregiver to lose it once in a while. It is ok to be angry, sad, frustrated and overwhelmed. Share what you are feeling with your family or loved one. Let them know that you aren’t feeling all these things because of them, you are feeling all of this because of the situation—the pain and what it has done to the family and the one for whom you care so deeply.
Communicate with each other.

It is a two-way street. Share those feelings rather than holding on to the frustration, fear and anger. You are borrowing trouble that you nor your loved ones need, if you do not remain open. Holding in those nasty feelings may come back and haunt you– one day you are going to blow and it is not going to be pretty. Don’t wait until the fuse is lit because then things are said that hurt your loved one. Things that cannot be taken back no matter how much you wish you could.

I have been guilty of opening my mouth in frustration and saying some very hurtful things to her. Things that I didn’t mean and things that I wish I could take back more than anything. I am thankful because she knows that it is the anger and frustration talking and she can and does let my slips of hurtful words roll on by her and doesn’t dwell on them.

Trust me, we were not always like that but over the years we have learned to understand that the pain can make each of we say things that we truly don’t mean. We have learned that the pain is a vixen waiting for the right moment to spring forward and turn our lives in to a “he said, she said” fight of the century.

As a caregiver, I have found times where I feel torn between providing for the family and being there when I am needed. This push and pull really sucks! My job consists of taking me out of state each week. There are Mondays that I want nothing more than to stay at home and comfort her. Yet, I know that this will not happen, as I must be the provider which means leaving her and heading out to work. It doesn’t matter how much pain she is in. I have to leave her and go to work.

Yes, there are times she gets angry at me as she wants me there with her. It isn’t that I can really do anything to make the pain better. It is just knowing that she isn’t alone. I understand that but I am helpless to do anything about it. Even though she gets upset, I know she understands that if I could, I would never leave her alone.

As a caregiver, don’t you feel pulled and pushed in a hundred different directions at the same time? Do you find yourself angry, sad and frustrated because you want nothing more than to help your loved one? Would you take the pain from them in a heartbeat? I know I would. After all, I feel it was my job to protect her and help make her life a fairy tale come true.

The pain changes all that but remember even though you are angry, sad and frustrated you can make the world of difference for your loved one by just being there for them. You can make a difference by just listening, by holding their hand or giving a gentle hug when they need it the most.

Help find the humor in this world of pain and share it with them. You will be surprised how much laughter can help both of you. My special gal tells people all the time that if she had a penny for every time I have made her laugh we would be millionaires. That makes me smile.
Here is the pearl:

Remember the pain affects the whole family unit and it is up to everyone in that unit to make the best of the situation. Sure, you can choose to be miserable, depressed and find yourselves fighting all the time. A better option is to choose to communicate with each other and find the love, laughter and the ability to still see all that is good in your lives. Live the life that you want to live and refuse to let the pain destroy what means the world to you.

http://paincommunity.org/angry-sad-frustrated-unspoken-feelings-caregiver/

Coping With Chronic Pain Symptoms Family And Friends

Today's valuable post from princessinthetower.org (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. 

Self-Compassion

“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.

http://princessinthetower.org/how-chronic-pain-affects-your-friendships-and-what-to-do-about-it/

Blog Treatment for chronic sciatica pain

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Vast Numbers Of Americans Live With Daily Chronic Pain

Today's post from drugs.com (see link below) looks at the huge numbers of Americans living with chronic pain on a daily basis. From this, you can also assume that similar proportions apply to many other first world regions and this highlights how ironic it is that nations with the best health services and facilities still have such a high proportion of chronic pain sufferers. A possible cause of this could be put down to lifestyle choices but most neuropathy patients will agree that their pain is a secondary result of another disease or condition. The article talks about the majority of these 25 million having back and joint pain but given that we know that 20 million Americans are living with neuropathy, they will all be experiencing some form of pain, or uncomfortable symptoms. Makes you wonder what the cross-over statistics really mean. Nevertheless, 25 million American chronic pain sufferers means 25 million people receiving medication of one sort or another and over a long period of time. The problem is obvious!

25 Million U.S. Adults Struggle With Daily Pain 
TUESDAY Aug. 18, 2015, 2015

 Pain is widespread in much of America, with more than 25 million adults -- 11 percent -- suffering on a daily basis, a new national survey reveals.

And approximately 14 million adults -- roughly 6.4 percent -- experience severe pain, which can be associated with poorer health and disability, researchers found.

Other national studies of chronic pain have yielded similar results, said study author Richard Nahin, an epidemiologist with the National Center for Complementary and Integrative Health at the U.S. National Institutes of Health (NIH).

"What makes this study unique is that I also looked at how often adults have mild pain," he said.

Nahin found that about 54 million adults -- nearly one-quarter -- reported "mild," but not incapacitating, pain.

Whether pain is increasing nationally is difficult to say, Nahin said. But the good news is that roughly half of those living with severe pain indicated in the survey that they were nevertheless in good or excellent physical health overall.

And even better news: The poll found that 44 percent of American adults say their lives are pain-free.

The estimates are based on the responses of nearly 9,000 adults who took part in the 2012 National Health Interview Survey. The poll is conducted annually by the U.S. Centers for Disease Control and Prevention.

The NIH says more Americans are affected by pain overall than are touched by diabetes, heart disease and cancer combined. Also, chronic pain is the leading cause for long-term disability.

Nahin said joint pain and back pain are the most common sources of discomfort.

"About one-third of all adults have joint pain in a given year, and a bit more than a quarter of all adults have back pain," he said.

For the study, published in the August issue of the Journal of Pain, Nahin asked survey participants about the frequency and intensity of pain experienced in the preceding three months. He coded reported pain into five categories of severity, based on persistence and the degree to which it was "bothersome."

About one in 10 adults experiences "a lot" of pain, researchers found, and nearly 56 percent reported some pain in the preceding three months.

Overall, the researchers found that whites, women, and the elderly were more likely than others to report relatively severe pain.

The survey also found that adults experiencing the most severe levels of pain are likely to be more disabled, in worse overall health, and in need of more health care, compared with people dealing with relatively mild pain.

For those looking to mitigate chronic pain, Nahin said various health approaches can be tried with -- or in place of -- prescription painkillers. Many people turn to yoga, massage and meditation to relieve pain, for example.

"Evidence-based clinical practice guidelines from the American College of Physicians and the American Pain Society found good evidence that cognitive behavioral therapy, exercise, spinal manipulation and interdisciplinary rehabilitation are all moderately effective for chronic or subacute [lasting more than four weeks] low back pain," Nahin noted.

In addition, American College of Rheumatology guidelines advocate tai chi, acupuncture and/or walking aids for knee arthritis, he said.

People in search of a pain plan will often need to mix it up, said Dr. Edward Michna, director of the Pain Trials Center at Brigham and Women's Hospital in Boston, and a board member of the American Pain Society.

"Certainly not all pain requires opioids," Michna said, referring to narcotic medications such as hydrocodone (Vicodin) and oxycodone (OxyContin, Percocet).

"They have a role to play, of course," he added. "But what is needed is an individualization of care and a multidisciplinary approach that might include physical therapy, mind-body therapy, alternative medicines of various kinds, and other types of nonnarcotic medications."

The best treatment "will usually be a combination of these things. There is no one right answer," said Michna, who was not involved in the study.

More information
There's more on pain management at the American Chronic Pain Association.

Posted: August 2015

http://www.drugs.com/news/25-million-u-s-adults-struggle-daily-pain-57937.html

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/

Chronic Pain And Anxiety

Today's post from sciencedaily.com (see link below) may seem like a no-brainer to people living with neuropathy symptoms. Really, what do they expect from a patient living with chronic pain; that they should be dancing with joy? However, as with everything of this nature, until it's scientifically proved, many people in the medical community will take a consequence of a disease less seriously than they should. The problem for neuropathy patients arises when decisions have to be made about treatment. Many people are already on anti-depressants for their neuropathy symptoms (accepted treatment to suppress nerve pain) so doctors need to make careful choices and preferably in full consultation with their patients. The first thing is to decide whether the anxiety and maybe depression caused by chronic pain actually needs extra chemical treatment and the second is to decide what the best way forward is. Maybe it's best to treat the pain symptoms with the right pain suppressant, rather than the mental symptoms caused by the pain itself. Always worth discussing with your doctor or specialist.

Chronic Pain Sufferers Likely to Have Anxiety
May 8, 2013 

Story Source:This story is reprinted from materials provided by Health Behavior News Service, part of the Center for Advancing Health. The original article was written by Glenda Fauntleroy.

Patients coping with chronic pain should also be evaluated for anxiety disorders, according to new research published in General Hospital Psychiatry.

"I think [health care] providers are more aware of the common occurrence of depression in patients with chronic pain, and there has been less of an emphasis on anxiety," said lead author Kurt Kroenke, M.D., professor of medicine at Indiana University in Indianapolis.

In the new study, researchers evaluated 250 primary care patients who were being treated at a Veterans Medical Center in the Midwest. All patients had moderate to severe chronic joint or back pain that had lasted at least 3 months despite trying pain medications.

The participants were screened for five common anxiety disorders: generalized anxiety, characterized by persistent worry; panic, or sudden, repeated attacks of fear; social anxiety, characterized by overwhelming anxiety in everyday social interactions; post-traumatic stress, or a repeated feeling of danger after a stressful event; and obsessive-compulsive disorder, characterized by repeated thoughts or rituals that interfere with daily life. They were also screened for health-related quality of life issues, such as fatigue, sleep habits, and work productivity.

The study found that 45 percent of the pain patients screened positive for at least one or more of the common anxiety disorders. And those who had an anxiety disorder also reported significantly worse pain and health-related quality of life than patients without a disorder.

"It is important to note that patients in our study screened positive for an anxiety disorder but not all would have a full-blown anxiety disorder if they had a diagnostic psychiatric interview," said Kroenke. "Some may just have anxiety symptoms and not all would warrant active treatment. However, probably at least 1 in 5 might have some type of anxiety disorder."

The researchers also found that it was common for the five different types of anxiety conditions to occur in combination with each other and with depression.

"Psychological comorbidities are common in patients with chronic low back pain and other studies have also shown a high prevalence of depression, anxiety and other psychological conditions," said pain expert Roger Chou, M.D., an assistant professor of medicine at Oregon Health & Science University.

Chou added that the guidelines on evaluating and managing lower back pain do recommend clinicians assess patients for psychological factors that may be contributing to a poorer prognosis and address them with appropriate treatments.

"Many patients benefit from cognitive behavioral therapy to help them in coping with the pain and related anxiety," Chou continued. "Just throwing pain medications at someone like this doesn't tend to be very effective since you're not dealing with an important driver of the pain."

http://www.sciencedaily.com/releases/2013/05/130508213112.htm

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

Is Your Neuropathy A Chronic Pain Pt 1

Today's post from hcmsgroup.com (see link below) is the first of two articles concerning chronic pain and what we understand that to be. The second part will appear tomorrow. It's a real problem for many people living with neuropathy describing what their pain feels like and convincing people from friends to doctors, that their pain and discomfort can often be called chronic by any measures of the word. These two articles may help you sort things out in your own mind.
 

Chronic Pain: An Overview
Posted on September 9, 2015 by KnovaSolutions

A Growing Public Health Concern

Chronic pain affects 100 million Americans according to the American Academy of Pain Medicine (AAPM). That’s more than those with diabetes (25.8 million), heart disease (16.3 million), stroke (7 million) and cancer (11.9 million) combined.

Experiencing pain can take a toll on everyday life. The AAPM reports that about four in 10 Americans have pain that interferes with their mood, activities, sleep, ability to work or enjoyment of life.

Chronic Pain Series

Stay tuned for future newsletters on these types of chronic pain:
Neuropathic pain (tingling, burning, stabbing pain involving the nervous system).
Muscle pain (neck, back, legs etc.)
Inflammatory pain (redness, swelling and pain associated with an infection, irritation or injury in a specific location).
Mechanical/compressive pain (any kind of back pain caused by stress and strain on the spinal column).

Is It Chronic?

Pain is an unpleasant sensory or emotional experience. When it resolves quickly, it is called acute pain (think pain after surgery or with broken bones). With acute pain, the nervous system sends signals to the brain alerting us to take care of ourselves. When pain persists, it is called chronic or persistent pain. The nervous system keeps sending pain signals for weeks, months or even years. Chronic pain can be caused by conditions such as rheumatoid arthritis and peripheral neuropathy; an injury or accident; or can occur without any past injury or illness.

Whether your pain is considered chronic pain depends upon who you ask. Some pain experts define chronic pain as pain that lasts for three months; others say six months or even 12 months. The International Association for the Study of Pain provides an alternate definition: pain that continues after the expected healing period.

Because of its prevalence, seriousness, cost, risk of overuse of opioid medications, and need for prevention, chronic pain is considered a public health concern. In a study published in The Journal of Pain, Johns Hopkins University health economists reported that chronic pain costs from $560 to $635 billion a year. This study sought to evaluate the total cost of chronic pain on society; it quantified healthcare costs associated with treating chronic pain ($261-$300 billion) as well as the value of lost productivity such as absences and lost wages ($299 to $335 billion).

Experts expect the number of people affected by chronic pain to continue to grow. The most common conditions reported are low back pain, severe headache or migraine pain and neck pain. Chronic pain is a major driver behind doctor visits, use of medications, cause of disability, and a key reason for loss of quality of life and productivity.

Loss of productivity can refer to missed days (sick days) or disability days but also as reduced work performance. Participants in the American Productivity Audit reported losing on average 4.6 hours per week of productive time at work due to a pain condition. Those with musculoskeletal pain cited 5.5 hours per week of lost productive time and headache caused 3.5 hours per week of lost productivity.

Since trouble sleeping is a common concern, the effects of sleeplessness can cause a recurring cycle of fatigue, difficulty with concentration and low energy levels. It’s no wonder then that depression and a lack of enjoyment of life are common challenges for those in chronic pain. In an American Pain Foundation survey of chronic pain sufferers, 86 percent said they were unable to sleep well, 70 percent had trouble concentrating, 74 percent described that their energy was affected by their pain, and 77 percent of participants said they felt depressed.

There are many approaches to treating chronic pain, including prescription and over-the-counter (OTC) medications and numerous alternative strategies. OTC medications such as ibuprofen and acetaminophen can offer pain relief and are generally safe for most people to take (see box). A variety of prescription drugs are also available. Many pain sufferers try various approaches to discover what works best for them. For example, one KnovaSolutions member said he felt better after taking ibuprofen at night so he could rest, going to exercise classes twice a week and using a heating pad for his low back pain. Another reported that massage, acupuncture and yoga helped reduce her migraine pain.

A Note of Caution

Prescription medicines called opioids (or narcotics) are powerful pain killers. Because they can cause physical dependence, providers often recommend them for short-term use, such as for acute pain. Besides the risk of dependence, it is possible to develop tolerance for pain relievers, which results in the need for increasing doses to receive the same level of relief.

Opioid use and misuse in the U.S. have risen dramatically since the 1990s. The U.S. Centers for Disease Control analyzed prescribing data from pharmacies that showed that healthcare providers wrote 259 million prescriptions for opioids in 2012 and that 46 people died each day that year from an overdose of opioids. Because opioids are increasingly used illegally, it is important for people with valid prescriptions to store their medications out of the reach of others. A National Survey on Drug Use and Health found that 29 percent of people over 12 years who used illicit drugs for the first time began by using prescriptions drugs for non-medical purposes.

If you or someone in your family struggles with chronic pain, your KnovaSolutions nurse is a source for additional information and support. Please come back to our website monthly to see more newsletters about chronic pain and other topics. Let us know how we can help — 800/355-0885.

Read Related KnovaSolutions Newsletters
Growing Evidence of Abuse Among Commonly Prescribed Medications.
NSAIDS: Popping Like Candy? Increase Safety by Knowing the Risks

Click here to view/download the full newsletter.

http://www.hcmsgroup.com/chronic-pain-overview-september-2015/