Pain Companion: Overcoming Victimization

By Sarah Anne Shockley, Columnist

One of the most challenging things about being in chronic pain is the powerlessness we often feel because we are unable to heal our bodies and stop the constant pain.

We may feel victimized by our conditions, pharmaceuticals, invasive procedures, the impersonal nature of most institutions, and even our own bodies.

We may feel we are at the mercy of an interlocking system of agencies and organizations, one or all of which may not present a caring or compassionate face. Medical and insurance forms, appointments, tests, procedures, and legal hearings don’t take into account that we are not at our best physically, mentally and emotionally.

Yet we may blame ourselves if we are not on top of the situation or able to answer questions clearly and accurately.

Sometimes, being ill or injured feels like a crime committed by us!

Take Responsibility

Believing that others are responsible (or guilty) places them in a position of power – leaving you to become the victim. To leave that feeling of powerlessness behind, I decided that, regardless of the circumstances of my injury, I was responsible for my situation from that point forward.

I declared myself at the center of my own emotional and physical well-being and recovery. I decided not to accept an outside source as the final authority, no matter how credible. I knew that I was the one who would ultimately heal myself anyway, regardless of the method used.

That decision alone, while not bringing with it an instantaneous and miraculous cure, at least afforded a measure of relief and a feeling of having more access to different choices, rather than living entirely at the mercy of outside authorities and systems.

Notice What You Can Control

In an effort to feel less at the mercy of outside forces and more in control of my life, I started noticing what aspects of my life were still under my control.

I noticed the decisions I was already making and congratulated myself for them. I also looked at the ones I could take back -- that I had handed over to others because I didn’t know I could make them for myself or felt I didn’t have the knowledge or strength to make on my own.

Instead of following along with everything suggested by medical practitioners without question, I took authority back for myself and became part of the decisions about medications and treatments.

Choose Your Own Path

I decided that I was in charge of my own healing path. I became as knowledgeable as I could about my condition and what modalities were available, so that I could make informed decisions about my treatment.

I researched alternative therapies, natural healing, recent studies and the latest medical breakthroughs. I read blogs and stories about how other people were coping with my condition, and how some had made improvements or found ways to cure themselves.

I looked into what I could can do for myself: How improving my diet could help healing, how I could think more positively, what herbs and supplements might be beneficial, how I could reduce the amount of stress I was under, and how I could get more restful sleep.

Some of these things made only small changes in the amount of pain I was in, but doing them gave me a greater sense of direction in terms of finding ways to live with and ease my pain. It felt empowering to make my own choices, instead of putting my condition and my pain at the helm all the time.

Living with constant pain can make you feel powerless. It’s easy to feel that you have lost control over your own destiny. But thinking of yourself as a victim of pain or a victim of circumstances does very little to help you move toward whatever healing is possible for you.

Deciding to take control of whatever is in your power, taking responsibility for your own healing path, and making conscious choices toward increased well-being on a daily basis can help relieve feelings of victimization and powerlessness. And it allows us to be more fully available to new possibilities that may come our way.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Positive Thinking Helps Me Cope with Chronic Illness

By Ellen Lenox Smith

Recently, I had a column published on tips for coping with gastroparesis – a digestive disorder that interferes with the movement of food through the intestine.

Despite my research and best efforts to try all the advice I gave, I continued to have no success with elimination. My life was weekly colonics, along with home enemas on the other days.

After six months of my gut essentially being shut down, I finally went to a new doctor, to find out that the diagnosis of gastroparesis was incorrect. I was dealing instead with “motility issues” caused by Ehlers-Danlos syndrome.

Feeling frustrated and discouraged, but also determined, I decided to try one more alternative treatment to see if I could find some relief.  

I found my old DVD of the “The Secret” and forced myself to once again listen carefully to what was being described, to see if this could turn things around. I had used this process before when I first had to retire, as I was experiencing excessive stress relative to our financial situation. I was so concerned how we would survive financially without my income.

Watching the DVD, I learned to understand that energy flows where attention goes, and that life is a product of our thoughts and feelings. It seemed nuts to me at the time, but I had nothing to lose and everything to gain if the process worked.

ellen lenox smith

I began to focus on wanting to have enough money to pay our bills. And strangely enough, within a month, that stress over money seemed to leave me and I began to trust that things would fall into place.

Today, ten years later, I have remained calm about money, which still shocks me! This was not who I was before.

Now I was back to the drawing board to see if this could turn my motility issues around. Since energy flows to what you focus and think about, you have to train yourself not to focus on what you don’t want, but on what you are grateful for andwant in life.

To give this a try, I was to wake up each morning and spend a few minutes in bed thinking about what I am grateful for and then visualize what I want in life. Since it seems harmless and I needed help, I decided to try this process again.

About three weeks ago, I started doing this visualization, remembering what it was like to feel the sensation of having to eliminate and also the process of feeling the release. I know this sounds somewhat irrational, but after six months of nothing working, I was game for anything.

Within three weeks of trying it, I began to not only feel the sensation, but actually began to have success with elimination. All seems to be “on go” unless I eat foods that I react to or I’m under stress, both of which cause the GI system to shut down.  

My system has only shut down three times in the past three weeks. Something is changing and the results are thrilling and fill me with new hope.

Focusing on the positive and pushing negative situations out of the mind is not easy. Just look at the evening news! We wait until the end of the national news for one piece called “Making a Difference” that ends the broadcast with one positive report. Why don’t we sit and watch all positive things that have happened that day?

“The Secret” states: “Everything we think and feel is creating our future. If you’re worried or in fear, then you’re bringing more of that into your life throughout the day.”

What do you have to lose to give this a try? I now no longer stress about money and have added a successful movement of my gut again after six months of no success. I love how much more positive and hopeful I am feeling by practicing this simple process. Future goals to try will be imaging a walk on sand and in my yard,. along with driving again.  

Over the past eight years, I have utilized many conventional treatment modalities. Not all have proven successful, but I feel that I owe it to myself and my family to explore any treatment which might enhance the quality of my life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Wheat Protein Could Worsen Chronic Illness

By Pat Anson, Editor

Gluten isn’t the only reason why some people should avoid eating wheat.

German researchers have discovered a second protein in wheat that triggers inflammation and worsen symptoms of multiple sclerosis, lupus, rheumatoid arthritis and other chronic illnesses. The finding could help explain why some people who are not gluten intolerant and do not have celiac disease still benefit from going on a gluten-free diet.

Researchers say a family of proteins called amylase-trypsin inhibitors (ATIs) make up only about 4% of the protein found in wheat. But they can trigger powerful immune system reactions outside the digestive system, in the lymph nodes, kidneys, spleen and brain.

"As well as contributing to the development of bowel-related inflammatory conditions, we believe that ATIs can promote inflammation of other immune-related chronic conditions outside of the bowel,” said lead researcher, Professor Detlef Schuppan of Johannes Gutenberg University.

“The type of gut inflammation seen in non-celiac gluten sensitivity differs from that caused by celiac disease, and we do not believe that this is triggered by gluten proteins. Instead, we demonstrated that ATIs from wheat, that are also contaminating commercial gluten, activate specific types of immune cells in the gut and other tissues, thereby potentially worsening the symptoms of pre-existing inflammatory illnesses.”

Schuppan presented his findings at United European Gastroenterology Week. He said future clinical studies will explore the role that ATIs play on chronic health conditions in more detail.

"We are hoping that this research can lead us towards being able to recommend an ATI-free diet to help treat a variety of potentially serious immunological disorders," said Schuppan.

Celiac disease is a gastrointestinal inflammation caused by the ingestion of wheat, barley, rye, and other foods containing gluten. About 1-2% of the population has celiac disease, but most cases go undiagnosed and untreated.

People with non-celiac gluten sensitivity (NCGS) may also develop gastrointestinal symptoms, as well as headaches, chronic fatigue, fibromyalgia and allergies. Abdominal pain and irregular bowel movements are frequently reported with NCGS, which can make it difficult to distinguish from irritable bowel syndrome (IBS).

The symptoms typically appear after the consumption of gluten-containing food and improve rapidly on a gluten-free diet, even though gluten does not appear to cause the condition. Schuppan says the real culprit may be ATIs.

"Rather than non-celiac gluten sensitivity, which implies that gluten solitarily causes the inflammation, a more precise name for the disease should be considered," he said.

Chronic Pain Patients Go Underground for Relief

By Pat Anson, Editor

The stories seem a little hard to believe. Miraculous cures. Migraines that fade away.  Cataracts that disappear.  People crippled by arthritis suddenly able to walk again.

“I’ve seen people come in with crutches and throw the crutches way. I’ve seen some stuff that’s just crazy,” says Clint Feehan.

“We’ve seen a lot of miracles,” adds Irene Kohut.

We’re not talking about Lourdes or some other religious shrine, but an abandoned gold and silver mine in southwest Montana that’s been resurrected as a radon health mine.

For over 60 years, tens of thousands of people hobbled by arthritis, diabetes, fibromyalgia and other chronic conditions have visited the Merry Widow Health Mine. Many heard stories – often passed down by relatives and friends – that low levels of radon gas inside the Merry Widow will cure whatever ails them.

Radon is a colorless and odorless gas that is a natural byproduct of decomposing uranium. At high levels, radon gas can be dangerous and has been linked to cancer, but at low levels advocates say it helps reduce inflammation and has other healing properties.

Located near the hardscrabble mining town of Basin, the Merry Widow doesn’t look like much from the outside. Just a dark tunnel cut into the side of a mountain. Walk inside though and you’ll see people playing cards, reading and cheerfully chatting away in a friendly, social environment.

Many soak their hands and feet in cold spring water that seeps from the mine shaft. Others drink the water, convinced it will restore them.

“I drink it all the time. The water’s good for you. And I take water home with me. I take 20 gallons home,” says Feehan, a 64-year old Wyoming man who started visiting the Merry Widow three years ago to help with his arthritis pain.

“I could hardly get out of bed. My back, hands and ankles all hurt. So we just came up here and tried it, just for the heck of it. I had nothing to lose,” he said.

Like many, Feehan learned that it usually takes multiple trips inside the Merry Widow – for an hour or so at a time -- before he started to benefit from the experience.

“When you first came in, after a day or two, you’ll feel like you’re getting the flu. You’ll feel like you’re getting sick and you don’t understand why. And you think it’s not doing you any good. But it’s the toxins leaving your body is why you don’t feel good. And if you just keep coming, you’ll come out of it.”

That flu-like feeling is what Veronica Kim experienced when she first visited the Merry Widow in 2004. Veronica suffers from an inherited connective tissue disorder that left her unable to walk and confined to a wheelchair.  

“At first I didn’t have any result. Three days later my symptoms got worse,” Veronica says. “And my husband came to the office and said someone said this would be good for my wife but my wife’s symptoms got worse than ever. And everyone’s laughing and they said congratulations. That means its working!”

The treatments did eventually work for Veronica and she no longer needs a wheelchair.

“I can walk. I can jump. I can kick you even!” jokes Veronica, who started visiting the mine twice a year from her home in Seattle. “Seven days in spring and seven days in fall. I have to do it regularly. My body tells me I need a treatment.”

Veronica and her husband Chang -- who says the mine helped ease his back pain -- were so impressed they bought the Merry Widow in 2008.

The Kims recommend 32 one-hour visits to the mine spread out over 10 to 11 days – an obvious commitment of time and energy for anyone who wants the “full treatment.” Visitors pay $15 for an all-day pass.

“We have really nutritious water, which is mineral water, spring water. I’ve seen so many people, the water cleanses out their kidney stones,” says Chang Kim. “After two days you will see the changes in the complexions. Your face complexion starts changing. Your face shines. You detoxify.”

veronica and chang kim

Exactly how the radon gas helps people is not clear and Kim is careful not to make scientific claims about radon's benefits. He and others who’ve tried the treatment say a certain amount of faith is necessary to make it work.

“Human bodies are affected by emotional things. They got to be ready to get a treatment. You have to be in a phase believing that this mine will work,” he said.

Is it nothing more than wishful thinking? Does spending an hour or so in a cool damp mine have some kind of restorative effect? Does the social, communal atmosphere of being around other true believers play a role in making people feel better?

Irene Kohut first visited the Merry Widow 18 years ago, after a stroke left her partially paralyzed. All she knows is that the mine worked for her.

“I couldn’t brush my hair and had no feeling on one side,” she said.  “I think it helped. It always helps, but you have learn to believe in it. That’s what we come here for. And for the people.” 

Can Fish Oil Supplements Help Prevent Lupus?

By Pat Anson, Editor

Taking fish oil supplements could help prevent lupus and other autoimmune diseases, according to animal studies at Michigan State University.

Researchers gave female mice genetically disposed to lupus an omega-3 fatty acid called DHA, or docosahexaenoic acid, which is found in fatty, cold-water fish. The findings, published in PLOS ONE, were “overwhelmingly positive,” according to researchers.

“What we discovered was when lupus was triggered by crystalline silica, a toxic mineral also known as quartz that’s linked to human autoimmunity, DHA blocked the activation of the disease,” said Melissa Bates, one of the study’s lead authors and a doctoral student in MSU’s Department of Food Science and Human Nutrition and the Institute of Integrative Toxicology.

Lupus is a genetic disease that can be triggered by inhaling crystalline silica and by other environmental factors such as sun exposure. Quartz is the most common, and most dangerous form of crystalline silica, and is often found in the agriculture, construction and mining industries, where workers can breathe in the mineral dust.

“Lupus is the body’s immune system attacking itself and it can damage any part of the body including skin, joints and organs,” said James Pestka, an MSU professor of food science and human nutrition.

The study looked at the effect of DHA on lupus lesions in the lungs and kidneys of laboratory mice.  

“Ninety-six percent of the lung lesions were stopped with DHA after being triggered by the silica,” said Jack Harkema, a pulmonary pathologist. “I’ve never seen such a dramatic protective response in the lung before.”

Harkema says the DHA could be changing the way lung cells, also known as macrophages, react to the silica and somehow alter the immune system’s response.

“Cells in the lung can gobble up the silica, but it’s so toxic, it kills these cells,” Harkema said. “When they die, signals are sent out to the immune system that something is wrong. The body then produces such a strong response that it also starts to target healthy cells.

“Our next step is to figure out exactly what’s happening,” he said.

One theory is the DHA helps cells send an anti-inflammatory signal to the body so it doesn’t overcompensate and trigger an autoimmune response. Another is that DHA allows the cells to swallow up and remove the toxic silica from the lung without dying, preventing any inflammatory signals from being sent.

“What we do know is this study is a clear indication that eating DHA can prevent this one type of environmental triggering of lupus,” Pestka said. “It can suppress many of the disease’s signaling pathways, which current drugs on the market now try to target and treat.”

The National Institute for Environmental Health Sciences and the Lupus Foundation of America funded the MSU research.

DHA is produced by the algae that cold water fish eat and store in their bodies. It can also be found in fish oil supplements, which are used by more than 30 million Americans.

Previous studies have found that fish oil lowers an inflammatory response associated with autoimmune diseases. Fish oil may also help prevent cardiovascular disease and hypertension, although consuming large amounts of it may increase the risk of internal bleeding or stroke.

Don’t Take Away My Right to Kratom

By Jennifer Sage, Guest columnist

I'm on Day 5 of a withdrawal from all of my pain and anxiety meds at the moment this is written.

I just took my morning kratom about 30 minutes ago, assisted to the kitchen with my cane, and right now I can not only walk without the cane, but have zero effects of withdrawal. A very slight headache in the first few days, on and off, but that's it.

I would like to mention I'm 35, a multiple sclerosis sufferer, and a prescribed pain med patient for 7 years. I took off my fentanyl patch on Day 1. Haven't touched a hydrocodone since Day 1. Haven't taken anything other than a tapering dose of clonazepam every other day due to the deathly dangers of stopping that cold turkey.

This plant is a miracle. I've gone through the worst of withdrawals from meds that I couldn't function on to a happy, peaceful, pain-free existence without the use of any of them.

I'm a single mom, an author of 7 published novels, a finance industry employee, and I suffered immensely every day, some days even with the meds. I have wonderful doctors and I don't believe the healthcare system has let me down because they were doing all they could to keep me as productive as possible.

I took nearly a year off work 2 years ago because the MS was unmanageable. I only wish I had known about kratom sooner.

Am I going to be a felon now because I can't live in pain and I refuse to go back to that madness of life that kept me sick instead of healing me? A felon for taking a leaf that Mother Earth provided to do this very thing?

I understand the need for regulation. Put an age limit on it. Get the junk out of the smoke shops that real users of kratom don’t use. Go into the forums and you'll see that true users of this plant are buying high quality powders that we mix in water or juice and take it like we would our very dangerous pills.

JENNIFER SAGE

My 10-year old daughter just got her mom back. If you need her testimony of what life was like before kratom and after, I'm sure she would be happy to share with you. Kratom doesn't get you high. It's self-regulating. If you take too much (which I haven't, but I hear it can happen), you just get nauseous.

I've had days where I took 80-100 mg of hydrocodone on top of my fentanyl patch and was still in bed crying. I wanted to take 100 mg more just to stop hurting. But THAT would've killed me.

They've urged me to go on oxycodone and other more powerful drugs, but I get deathly ill when I take them. This is my choice. This plant that has no abuse potential, NONE, has in 5 days changed my life.

I will always be dependent on something to ease my pain. I choose kratom to be dependent on so that I can live my days without pain, and without the fog and stress of consistently wondering when my next meds can be taken. I would give my daughter this herb over the toxic pills for children once there's more research. There are no negative effects, but there are thousands of positive ones.

DEA, your war on drugs is with the meth labs and heroin that riddle our streets. Maybe if so much manpower wasn't being spent on this peaceful, harmless plant, a 10-year old girl in New Mexico would still be alive. Meth killed her and her mother. And you're going to put kratom in the same category?

It is our right to have a voice in this country, and you are trying to take ours away. Listen to the stories. We aren't trying to get high. We're trying to live our lives.

Jennifer Sage is an internationally acclaimed fantasy romance author, mother, advocate for healthy living, active hiker and, more recently, a user of kratom. Jennifer’s most recent book is The Last Valkyrie. You can learn more about her by clicking here.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Nanoparticles May Help Repair Injured Joints

By Pat Anson, Editor

Injecting an injured joint with nanoparticles – tiny, ultrafine particles so small they are invisible to the naked eye – controls inflammation and may help prevent the development of osteoarthritis, according to a new study.

Researchers at the Washington University School of Medicine in St. Louis found that injecting nanoparticles into the injured joints of laboratory mice reduces inflammation and the destruction of cartilage.

The nanoparticles used are more than 10 times smaller than a red blood cell, which helps them penetrate deeply into tissues.  The nanoparticles carry a peptide derived from a natural protein called melittin that has been modified to enable it to bind to a molecule and interfere with inflammation.

“The nanoparticles are injected directly into the joint, and due to their size, they easily penetrate into the cartilage to enter the injured cells,” said Samuel Wickline, MD, a professor of Biomedical Sciences at Washington University.

“Previously, we’ve delivered nanoparticles through the bloodstream and shown that they inhibit inflammation in a model of rheumatoid arthritis. In this study, they were injected locally into the joint and given a chance to penetrate into the injured cartilage.”

The nanoparticles were injected into the mice soon after an injury to prevent the inflammation and cartilage breakdown that can lead to osteoarthritis.

INFLAMMATORY PROTEIN (GREEN) IN CARTILAGE CELLS. IMAGE COURTESY of UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE

Whether such a strategy will work in humans years after an injury -- when osteoarthritis is established and there is severe cartilage loss -- still needs to be studied. But the findings suggest that the nanoparticles, if given soon after joint injuries occur, could help maintain cartilage and prevent the progression to osteoarthritis.

“I see a lot of patients with osteoarthritis, and there’s really no treatment,” said senior author Christine Pham, MD, an associate professor of medicine. “We try to treat their symptoms, but even when we inject steroids into an arthritic joint, the drug only remains for up to a few hours, and then it’s cleared. These nanoparticles remain in the joint longer and help prevent cartilage degeneration.”

Osteoarthritis (OA) is a joint disorder that leads to thinning of cartilage and progressive joint damage. Nearly 40 percent of Americans over the age of 45 have some degree of knee OA, and those numbers are expected to grow as the population ages. Frequently, an osteoarthritis patient has suffered an earlier injury — a torn meniscus or ACL injury in the knee. The body naturally responds to joint injuries with inflammation.

“The inflammatory molecule that we’re targeting not only causes problems after an injury, but it’s also responsible for a great deal of inflammation in advanced cases of osteoarthritis,” said Linda Sandell, PhD, a professor of Orthopaedic Surgery and director of Washington University’s Center for Musculoskeletal Research.

“So we think these nanoparticles may be helpful in patients who already have arthritis, and we’re working to develop experiments to test that idea.”

The study findings are published in the Proceedings of the National Academy of Sciences. The study was funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases; the National Heart, Lung, and Blood Institute; and the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health.

Pain Companion: The Stories We Tell Ourselves

By Sarah Anne Shockley, Columnist

Coming to grips with the fact that we’re living in chronic pain can be incredibly challenging and distressing. To help us get through, we tell ourselves stories – reasons, excuses and rationales – to cope with and explain a difficult situation.

That isn’t necessarily a bad thing. But sometimes we get stuck in a particular story which may impede us from getting to the next step or level in healing. Getting stuck in a story can make us think there isn’t really a next anything.

I’ll describe a few of the common stories, not to make anyone feel bad, but to remind us  that there are a variety of ways we can hold our situation in our minds and our emotions, and that some stories may be more useful than others. By knowing there are different perspectives, maybe we will be less apt to get stuck in any one of them.

It’s Only a Flesh Wound

This is often the first story we tell ourselves, sometimes even when we’re in pretty dire straits. It’s extremely hard to accept a severe illness or injury as a reality, and we may feel that if we let that truth in, it’s letting the pain win.

But we can’t stay in denial forever if we want to move on in life. We have to face our situation head on, even if it means accepting the fact that moving forward means we are moving forward with pain for a time. Maybe a long time.

Keep My Seat, I’ll Be Right Back

This is another flavor of denial that we often adopt once we’ve accepted that we’re dealing with more than a flesh wound. We tell ourselves that it may look bad, but it will be over soon. Not a terrible thing to believe, if it helps us get through the day.

On the other hand, if we sit in this story overly long, we may be avoiding some things we really need to deal with: That life has changed, that we need to make some accommodations, and that we may have to look at how pain is affecting our work life and relationships.

We may also be ignoring medical or alternative approaches that could really help us. We’re choosing the story that we’re not going to be doing this for long, so why initiate a long-term pain management protocol?

The Answer is Just Around the Corner

This story is about the belief that there is one miracle cure to find and then everything will be all right. There may be, but when we tell ourselves this tale, we could be missing out on all the little, but important things we can do right now to increase our well-being: like resting, drinking a lot of water, eating healthfully, laughing more, staying as stress free as possible, and staying connected with friends.

There is No Answer

This is the story we tell ourselves when we’re discouraged. When we don’t find an answer after months and years of searching, we might decide that there really isn’t any answer at all for us, and that we are lost in our pain forever.

We might then conclude that we just have to live with the pain in a state of resignation. We lose hope and stop moving toward answers and start to dig in for the long haul.

Pain is Bigger than Me

Another common tale is that pain is bigger than we are. It is so all encompassing, so demanding, and so ever-present that it can begin to feel like it has taken over our whole world.

Yes, it may be everywhere we go right now, but it is not the totality of who we are. Pain is an unpleasant experience we’re having, but it is within our experience of life, and it is not all of life or all of us. We need to be careful not to confuse ourselves with our pain, and to remember to find ways to experience pleasures and joys alongside of it wherever we can.

Sometimes the stories we tell ourselves are the only way to get up in the morning or to make it through the day. But sometimes the story is what’s keeping us stuck. I guess the question to ask is, how is my pain story serving me? Is there something I can change in it that will lead to a greater sense of hope, well-being and renewal? Then we can choose to create a different tale to tell ourselves.

Maybe it becomes the story of how healing isn’t some unknown point in the future, dependent upon one right answer, but what we do every day. It becomes the story of finding ourselves again when we thought we were lost, and the story of allowing our healing to take the time it needs while maintaining a balance between acceptance of our current limitations and positive action toward a less painful future.

It becomes a story that focuses more on where we’re headed than what’s wrong right now. And it’s a story we’re free to modify, enlarge or swap out for a new one as soon as it becomes outdated or restrictive.  

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Negative Thoughts About Sleep Make Pain Worse

By Pat Anson, Editor

Negative thoughts about pain and not being able to sleep can worsen chronic pain conditions like fibromyalgia, arthritis and back pain, according to British researchers.

“Pain-related sleep beliefs appear to be an integral part of chronic pain patients' insomnia experience,” said Nicole Tang, a psychologist in the Sleep and Pain Laboratory at the University of Warwick. "Thoughts can have a direct and/or indirect impact on our emotion, behaviour and even physiology. The way how we think about sleep and its interaction with pain can influence the way how we cope with pain and manage sleeplessness.”

Tang and her colleagues developed a scale to measure beliefs about sleep and pain in chronic pain patients, along with the quality of their sleep.

The scale was tested on four groups of patients suffering from long-term pain and bad sleeping patterns, and found to be a reliable predictor of future pain and insomnia.

"This scale provides a useful clinical tool to assess and monitor treatment progress during these therapies," said Esther Afolalu, a graduate student and researcher at the University of Warwick. 

university of warwick

"Current psychological treatments for chronic pain have mostly focused on pain management and a lesser emphasis on sleep but there is a recent interest in developing therapies to tackle both pain and sleep problems simultaneously."

Researchers found that people who believe they won't be able to sleep because of their pain are more likely to suffer from insomnia, thus causing more pain. The vicious cycle of pain and sleeping problems was significantly reduced after patients received instructions in cognitive-behavioural therapy (CBT), a form of psychotherapy in which a therapist works with a patient to reduce unhelpful thinking and behavior.

The study, published in the Journal of Clinical Sleep Medicine, is not the first to explore the connection between pain and poor sleep.

A 2015 study published in the journal PAIN linked insomnia and impaired sleep to reduced pain tolerance in a large sample of over 10,000 adults in Norway. Those who had trouble sleeping at least once a week had a 52% lower pain tolerance, while those who reported insomnia once a month had a 24% lower tolerance for pain.

Can 3-D Sound Technology Silence Chronic Pain?

By Pat Anson, Editor

Cognitive behavioral therapy. Mindfulness meditation. Acupuncture. Massage. Yoga.

The list goes on and on.

You name it and most chronic pain patients have probably already tried some type of alternative treatment for pain relief. Many give up after a short trial period or simply can't afford to continue treatment.

But there's an innovative and inexpensive new way to treat chronic pain -- a CD that uses binaural sound technology to help listeners relax and "deamplify" pain signals. Think of it as a three-dimensional (3-D) stereo sound that reaches parts of your brain that regular sound can't.

"It's so easy. Anyone can pop in a CD and listen to it. The trick is to use it over time because when you use it regularly, you're training your brain away from pain, says Beth Darnall, PhD, a pain psychologist, clinical associate professor at Stanford University, and author of The Opioid-Free Pain Relief Kit: Ten Simple Steps to Ease Your Pain.

In addition to several practical tips at relieving pain, the book comes with a 20-minute CD that Darnall narrates using binaural technology, which she says is the "gold standard" in psychology for treating post-traumatic stress disorder (PTSD) and anxiety.  Darnall believes her CD is the first to use binaural sounds to treat chronic pain.

"The person just puts on headphones and I walk them through a total body progressive relaxation. Layered behind my voice are tones that go in one ear and in the other ear, in rapidly alternating sessions," Darnall told Pain News Network while attending PainWeek, a week-long conference in Las Vegas for pain management practitioners. 

"Most people will not perceive these tones, but your brain perceives them. This is called binaural technology and what it does is stimulates the different hemispheres of your brain in rapid alternating secession."

Wearing headphones is the key to making binaural technology work. So is listening to the CD at least twice a day. Darnall says it works in a way similar to cognitive behavioral therapy -- by "calming"  the brain and quieting the constant barrage of pain signals it is receiving.

BETH DARNALL, PHD

"Its only when you use headphones that the binoral works because the tones are going in one ear and in the other. And they're talking directly to your nervous system," explains Darnall.. "Even if you don't hear it, they're there.

"When you use it regularly, you're training your brain away from pain. You're literally retraining your neural networks to a calmer -- I don't want to say pain free --  state that helps people de-amplify. You're basically dampening the pain processing over and over again. And so over time your brain is less likely to go straight to the pain and amplification. You keep things at a calmer level where you have less pain and less distress."

You can click here to download an mp3 file and listen to a sample one-minute recording from the CD.

"We have observed is that it is very effective for pain," says Darnall, who recommends that users not be driving, doing chores or be engaged in anything else while listening to the CD.

"Sit. Close your eyes. Be present because we really want to induce a total body state ofdeep relaxation. If you're multi-tasking and doing other things, you're not fully relaxed."

Darnall recommends other relaxation techniques in her book to help people reduce stress and sleep better -- techniques she says can help reduce the need for opioid medication. She says listening to the CD will help enhance that process, but like any alternative treatment it takes time and effort to make it work.

"Most people with chronic pain, have been living with pain so long, if you listen to this once or twice, you're not going to scratch the surface. But over time we can train the whole nervous system away from pain," she said.

Senza Stimulator Rated More Effective Long Term

By Pat Anson, Editor

A two-year study of an innovative spinal cord stimulator shows the device is more effective at relieving chronic back and leg pain long term than traditional stimulators.

The Senza HF10 spinal cord stimulator uses high frequency pulses of 10,000 Hz to mask a patient’s perception of pain. Traditional stimulators typically use lower frequencies at 40 to 60 Hz.  

Spinal cord stimulators (SCS) are often considered the treatment of last resort for chronic back and leg pain, because the devices have to be surgically placed near the spine and connected to batteries implanted under the skin. The devices send electrical impulses into the spine to mask pain.

In a study of 171 patients with implanted SCS devices, 76% of those with back pain and 73% with leg pain had pain relief after 24 months with the Senza HF10. That compares to about 50% of the patients implanted with a traditional stimulator.

image courtesy nevro

The Senza stimulator is made by Nevro Corp. (NYSE: NVRO) a medical device company in Redwood City, California.

"By demonstrating a significant and durable decrease in back and leg pain over a two-year period, Nevro's HF10 therapy represents an important and evidence-based advance in pain medicine,” said Leo Kapural, MD, the lead author and principal investigator of the study, which is published in the journal Neurosurgery.  

“Extending comparative safety and efficacy outcomes from 12 to 24 months provides physicians, patients, and payers with rigorous evidence demonstrating the durability of SCS in treating chronic pain.”

The Senza SCS was approved by the Food and Drug Administration last year. It has been available in Europe and Australia for several years.

Nevro says the HF10 stimulator is the only SCS therapy that provides pain relief without paresthesia -- a tingling or buzzing sensation that lower-frequency stimulators use to help mask pain signals. Some patients have found paresthesia uncomfortable.

MarketsandMarkets, a market research firm based in Dallas, estimates the global market for spinal cord stimulators and other neuromodulation devices could reach $6.8 billion by 2017.

What Alternative Treatments Work for Chronic Pain?

By Pat Anson, Editor

A review of over a hundred clinical trials has found that some alternative pain therapies such as acupuncture, yoga, tai chi, and massage are effective in treating chronic back and neck pain, osteoarthritis of the knee, migraine and headaches.

But only weak evidence was found that they might help people with fibromyalgia.

The review was conducted by scientists at the National Center for Complementary and Integrative Health at the National Institutes of Health (NIH). The study,  published online in the Mayo Clinic Proceedings,  was conducted to give patients and primary care providers better evidence on the effectiveness of non-drug treatments for chronic pain.

“One major goal for this study was to be as relevant as possible to primary care providers in the United States, who frequently see and care for patients with painful conditions. Providers need more high quality information on the evidence base for pain management tools, especially nondrug approaches,” said lead author Richard Nahin, PhD, an epidemiologist with NIH.

“Overall, the data suggest that some complementary approaches may help some patients manage, though not cure, painful health conditions.”

The scientists “found promise” in the safety and effectiveness of these treatments:

• Acupuncture and yoga for back pain
• Acupuncture and tai chi for osteoarthritis of the knee
• Massage therapy for neck pain  
• Relaxation techniques for severe headaches and migraine.

Though the evidence was weaker, the researchers found that massage, spinal manipulation, and osteopathic manipulation may provide some help for back pain. Relaxation approaches and tai chi might also help some people with fibromyalgia.

Mixed or no evidence was found that glucosamine, chondroitin, omega-3 fatty acids, and S-Adenosyl methionine (SAMe) are effective in treating chronic pain.

Each year Americans spend about $30 billion on alternative and so-called complimentary health treatments, even though few studies have been conducted on their effectiveness. The NIH researchers had to go back 50 years to find enough clinical studies to review. Many of the studies involved fewer than 100 people, which weakens the conclusions drawn from them. Some of the same studies were used by the Centers for Disease Control and Prevention as evidence for its opioid prescribing guidelines, which encourage "non-pharmacological" treatments for chronic pain.

“It's important that continued research explore how these approaches actually work and whether these findings apply broadly in diverse clinical settings and patient populations," said David Shurtleff, PhD, deputy director of National Center for Complementary and Integrative Health.

Pain Companion: How to Live Better With Nerve Pain

By Sarah Anne Shockley, Columnist

I’ve lived with severe nerve pain for the past eight years and have, through trial and error, found simple ways to help reduce and quiet it down on a daily basis. 

Some of these methods may be obvious if you already live with nerve pain. I include them all here because I know that it certainly would have served me well to have had this information early on, instead of having to work it all out for myself.

The first thing I learned was to think about my situation differently. For a long time, I thought about my nerve pain as its own thing, separate from me. It was something I didn’t want to have around, as if it was its own entity. It was me against the pain.

I’ve come to understand that my nerve pain is an aspect of my body, and possibly myself, that is so raw, so irritated, so sensitive and so volatile that it does not serve to try to make it get better.

My nerves in pain don’t want to be poked or prodded or touched or manipulated into wellness. Even alternative treatments seem like too much to handle. I am a strong believer in acupuncture, but the idea of needles when my nerves are already screaming is not something I want to contemplate. Sometimes even light massage is too much.

When I began to accept the pain as part of my whole life experience, not something that could be extracted or aimed at and annihilated, I began to see that my approach to easing it was going to have to be much more holistic.

I found the best way to do that was to work with creating more well-being in the body around the nerve pain. 

Often, I found that trying to deal directly with my nerve pain actually made it worse, but this indirect approach, over time, was much more effective in helping to ease it.

Here are some methods to help the body feel the best it can around the pain:

Relax and de-stress as much as possible. Limit interaction with things that would normally “get on your nerves,” such as stressful situations, toxic people, crowded stores, and rush hour traffic.

Stay on an anti-inflammatory diet and try to avoid inflammatory situations that activate fright, tension, or adrenaline rushes, such as argumentative people or being argumentative yourself.

Get more rest and sleep by staying calm. Make doing less a priority. You might use herbal teas, such as chamomile, to help with sleep or read yourself to sleep while listen to relaxing music. Avoid staying up late on the internet.

Choose activities that not only suit your physical limitations, but also soothe the mind and soul, such as meditation, listening to beautiful music, singing, walking in nature, talking with loved ones, and reading inspiring words.

Spend time every day in nature walking and focusing your attention on the soothing feeling of the air on the skin, the breeze, the sunlight, and the sound of birds. Bare feet on the ground or in sand can be exquisitely soothing to the nerves.

Take long soaks in bath salts or products using aromatherapy. Let your body relax into the warmth and the delicious smells.

Keep moving in any way you can that doesn’t exacerbate the pain. It’s important to keep the blood and oxygen flowing to keep your muscles from stiffening up and adding to the pain. Stagnant blood and stagnant energy do not help you heal.

Aside from helping your body feel better physically, I also recommend taking care of yourself emotionally.  Here are some pointers:

Find the little pleasures and things you enjoy and appreciate. Don’t wait for the pain to leave before you enjoy yourself and your life. Find the places that don’t hurt and revel in them. If there aren’t any, look beyond your body and find the things you can take pleasure in around you, including nature, the creative arts, the community, and your family.

Don’t try to turn your life off to avoid feeling pain. Don’t close down your ability to laugh or have fun. This is still your life. It is the only one you have. Make the most of it, even if you have to include pain in the equation. Just let it be there. Even invite it along.

Be kinder to yourself. Create a self-love routine around taking care of your body and your emotions. Wash yourself with soothing hands. Buy things that have soothing smells, not sharp chemical odors. Indulge your need for more softness and kindness in your life. Wear clothes that feel soft against your skin. Talk to yourself using soothing words. Give yourself a break more often.

Finally, consider making friends with your painful nerves. Talk to them kindly. Tell them it’s safe to calm down.  Tell them that you’re paying attention to your body and you’re doing the best you can to heal.

Let them know that you hear them, you honor them and you respect what they have to say to you through the pain. Understand that they are in alarm mode right now, but you have heard them, and it’s okay to tone it down a little. It’s okay to let their message be carried to you a little more softly, a little more quietly.

I think one of the tricks to working with nerve pain is to understand that we have one central nervous system that lives throughout the body. Even if we are feeling nerve pain mostly in the face, neck or hands, it relates to and affects the entire nervous system and therefore the entire body.

I believe we can positively affect nerve pain in any part of the body by treating the whole body with calming, soothing, relaxing, and restoring activities and approaches. I’ve found that they work.  And anything we can do to bring the pain down a notch or two is well worth it.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

13 Tips for Living with Gastroparesis

By Ellen Lenox Smith, Columnist

Few people understand what it’s like to live with gastroparesis – a digestive disorder that slows or stops the movement of food from the stomach to the intestine. Not being able to digest food and eliminate waste properly causes abdominal pain and bloating.

Gastroparesis can develop when the vagus nerve is damaged by an injury or illness and the stomach muscles stop working properly. In my case, it was triggered by Ehlers-Danlos syndrome.

The most extreme cases of gastroparesis lead to severe nausea, vomiting, and dehydration, when urgent care may be required at a medical facility so IV fluids can be given.

You can’t allow partially digested food to ferment and become toxic in your body. There are cases where death has resulted from not being treated.

I have been searching for answers for two years now. I had times when things seemed semi-normal. But for the past three months, I have been having on and off luck with elimination and wanted to share some tips I’ve learned that may help if you also suffer from gastroparesis.

1. Changing eating habits can sometimes help control the severity of gastroparesis symptoms. It is suggested to eat six small meals a day instead of three large ones. Less food makes it easier for the stomach to empty.

2. Chew food slowly and thoroughly while drinking at least 8-ounces of non-carbonated, sugar-free, caffeine-free fluid with each meal.

3. Walking or sitting for 2 hours after a meal -- instead of lying down -- may assist with gastric emptying.

4. Avoid eating high-fat foods, because fat slows digestion. Red meat, pork and fowl should be ground.

5. Avoid raw vegetables and fruits. They are more difficult to digest and the undigested parts may remain in the stomach too long. Oranges and broccoli, in particular, contain fibrous parts that do not digest well. Acceptable vegetables might include avocado, summer squash, zucchini, or mashed pumpkin.

6. A person with severe symptoms may have to turn to liquid or puréed food, which empty more quickly from the stomach. Puréed fresh or cooked fruits and vegetables can be incorporated into shakes and soups.

7. Some doctors recommend a gluten free diet. Even mild gluten intolerance can result in the development of thyroid imbalance, which could worsen gastroparesis.

8. Fermented food rich in lacto-fermented foods such as sauerkraut, kimchi, black garlic, and kefir can also improve digestion. Bone broth is very nutritious and healing for your gut, as it contains calcium, magnesium, phosphorus, sodium, potassium, glucosamine, chondroitin, and glycine to ease digestion and soothe inflammation.

9. Believe it or not, chewing gum can make a big difference too. The act of chewing produces saliva, which not only contains digestive enzymes but also stimulates muscular activity in the stomach and relaxes the pylorus, the lower part of the stomach. Chewing gum for at least 1 hour after meals is a very effective treatment of gastroparesis.

10.  High-fiber laxatives such as Metamucil that contain psyllium should be avoided.

11.  You might want to considering giving acupuncture a try. Needles are believed to restore healthy immune and neurological function while removing blocks in your life-force energy called ‘chi’.

12.  Colonics is also something to consider and what I have had to turn to weekly to eliminate waste. A colonic is the infusion of water into the rectum to cleanse and flush out the colon.

13.  There are medications that can help. I had amazing and quick results using metoclopramide, but unfortunately ended up reacting to it and had to stop. That was heartbreaking!

Living with gastroparesis is not easy and most people connected to you have no idea the sensations it is creating in your body. Remember that eliminating is a natural and necessary process. You must rid your body of those toxins and not allow them to ferment inside you.

I hope that one or more of these suggestions will help to improve the quality of your life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

4 Tips to Avoid Chronic Pain’s Anxiety Trap

By Jennifer Martin, PsyD, Columnist

Am I ever going to get better?  Am I going to get worse?

What is in store for me next?

Is there anything I can do to make the pain go away?

How am I going to deal with this for the rest of my life?

How am I going to take care of my family?

Am I ever going to be able to be physically active again?

Am I going to be able to work or finish school?

These are just some of the questions that run through the minds of those with chronic pain.  For a lot of us, racing thoughts and anxiety are an unwelcome companion.  The fear and anxiety come at the most inopportune times and they envelope us.  Just when we think we have put the negative thoughts out of our mind, here they come again, like a wave crashing down and trapping us.

It is so important to take control of anxiety when you have chronic pain because anxiety can actually increase pain.  It is a vicious cycle that can spin out of control if not treated. 

Anxiety often times leads to poor sleep -- and poor sleep often leads to more pain the following day. 

Anxiety also leads to negative thoughts – and negative thoughts may lead to feelings of depression, isolation, and hopelessness. 

These feelings can lead to noncompliance in treatment or inactivity, which may increase pain.  Anxiety can cause muscle tension and an inability to relax, which also has the ability to increase pain. 

Do you see where I am going with this?  Anxiety and pain are closely related.

So, if you are suffering from anxiety and a chronic condition, what can you do?  Here are four tips to avoid or diminish anxiety:

1) Distract yourself as much as you can:  When you begin to notice anxious thoughts, tell yourself “STOP” and then focus your attention on something you enjoy.  Whether it is relaxing thoughts of the beach or an activity such as painting, talking with a friend, or watching TV, distraction will get your attention away from your anxious thoughts and onto something else.

2) Exercise:  Exercise does not have to be physically strenuous.  Take a 10 or 15-minute walk while listening to an iPod or book on tape.  Stretch for fifteen minutes.  Research some gentle yoga poses.  Anything you can find that works for you that does not increase your pain is great.  Exercise can do amazing things for your state of mind and those tense, anxious muscles.

3) Find help and support:  Support groups are wonderful places.  I always tell people, “You cannot really understand what it is like to have chronic pain or a chronic illness unless you have one.”

Having a chronic condition can feel extremely lonely, even in the most crowded places.  Support groups offer a non-judgmental atmosphere filled with people who have some understanding of what you are going through.

Individual therapy is also a great option, particularly if you don’t want to talk about what you are going through with friends, family or in a group of people.  It is a great place to learn additional tools and coping techniques to help deal with chronic pain and anxiety.

4) Breathe: Research different breathing techniques.  Learning to slow your breathing when you are experiencing anxiety will not only calm your mind, it will calm your body too, thus helping your pain.

If you have chronic pain and anxiety, start today and help yourself get help.  Even if it only helps your pain a little bit, isn’t it worth it?

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, colitis and other digestive diseases.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.