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.

How Going Gluten-Free Changed My Life

By Lisa Ayres, Guest Columnist

I would like to share with readers my life-changing experience after eliminating gluten from my diet.

I had spinal implant surgery for spondylolisthesis about 24 years ago. For those who don’t know, spondylolisthesis is a defect in the spine that causes vertebra to slip to one side of the body. You can have spondylolisthesis without even knowing it. Someone may experience little to no pain and not know they have a “back issue.”

In my case, it got progressively worse as time went on.

After the surgery, I had physical therapy and even became certified in personal training to learn how to care for myself. I also took hydrocodone for pain, up to 3 tablets a day depending on my activities.

About 10 years ago, I also started having arthritis in my hands. They would throb after a few hours of gardening or similar use. I was told it was erosive arthritis. My toes also were affected and caused me a great deal of pain when I was on my feet without thick soled shoes.

My 24-year old daughter suffered from intestinal problems most of her life. After having pizza with friends one day, she came home with stomach cramps and was basically ill. I do a lot of research on issues that crop up in our lives and gluten intolerance kept popping up online as a clear possibility.

As a declaration of solidarity, and to make meals and shopping easier, I joined my daughter in going gluten and casein free. I found out that if one has gluten intolerance, they almost always have casein intolerance also. Casein is found in dairy products. 

LISA AYRES

It wasn’t easy for us to rid our diets of both gluten and casein, but to find out if my daughter’s illness was caused by them we had to start somewhere. On April 21, 2015, we cleared our diets and house of all gluten and casein products.

The first initial change was that my daughter appeared to get sicker. Stopping gluten is similar to stopping opioids for some people -- you go through a type of withdrawal. There are many websites, such as MentalHealthDaily.com, where you can learn more about gluten intolerance, withdrawal, and what you can and cannot eat. 

For 8 days she had severe joint pain and flu like symptoms. She said her joints felt worse than the pain she experienced when she broke her foot years before. But, her stomach discomfort began to subside almost immediately after giving up gluten and casein. By the ninth day the withdrawal symptoms vanished and she was feeling wonderful.

I didn’t have stomach problems caused by gluten, but my daughter and I live together and it would be not only unkind to eat restricted foods in front of her, it would be difficult to prepare separate meals, separate work areas, etc. So I changed my diet when she did. 

I had an unanticipated reaction. I had no withdrawal symptoms, but within 48 hours I had what can only be described as miraculous changes.

Due to the arthritis, my hands had a limited range of motion. My fingers were thick with swelling and I hadn’t been able to make a fist with my left hand in at least two years. My right hand also was swollen. The throbbing at night, sometimes without any particularly heavy use, was not only painful but depressing. Activities I had enjoyed were quickly running from my life. I was only 58-years old but felt decades older. The ongoing ache in my back was like an unwelcome guest that I could only get to leave with hydrocodone. 

But 48 hours after going gluten and casein free, I awoke, stretched, and moved my hands freely. My ring felt loose on my finger, the clench of my hands strong and flexible. 

This dietary change is a game changer for me. Plans I had put aside and tried to forget are now possible again. The pain in my back is now mainly managed with Tylenol and then only a couple of times a month. I have only taken hydrocodone twice since dropping gluten from my diet. My depression also has lessened. 

The systemic inflammation caused by the allergic reaction to gluten should not be ignored. A two week elimination diet is the best and only way to see if gluten really is the culprit. Tests currently are not accurate. 

My daughter had an emergency appendectomy and bowel re-section. It was advised by a gastroenterologist that she also get tested for celiac disease. Mind you, this is an experienced doctor.  They did an endoscopy on my daughter and the results were negative. However, the test results page included a disclaimer that if the patient had already cleared their system of gluten and there was no inflammation, the test wouldn’t be accurate for celiac or gluten sensitivity. 

The doctor didn’t tell us that eliminating gluten would “hide” her sensitivity. We only happened to have read the results ourselves. So the test wasn’t needed for her to know to avoid gluten!

Eliminating gluten and casein from your diet is the most accurate way to find out if you have an allergy or sensitivity to them.  I think many people aren’t aware that gluten and casein can cause such reactions. They hear how people are getting tested and clearing them from their diets, but when the results are negative, it feeds into the belief that being gluten-free is just a fad. 

If you are in pain, remember that gluten causes systemic inflammation which is pressing on sore joints and everything else in your body. You owe it to yourself to be as pain free as possible.

Lisa Ayres lives in South Florida. She suffers from spondylolisthesis, arthritis, and is gluten and casein intolerant.

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.

Updated Device Helps Prevent Migraines

By Pat Anson, Editor

A new pocket-sized wearable device is available to help treat and prevent migraine headaches.

Cefaly Technology has released the Cefaly II, an updated version of the Cefaly I, which is worn over the forehead like a headband and uses small electrical impulses to stimulate the trigeminal nerve, which has been associated with migraine headaches.

The Cefaly II is much smaller and fits in the palm of a hand. Like its predecessor, the device is worn on the forehead, but is held more securely in place by a magnet. Because of its smaller size, the manufacturer believes the Cefaly II will be more accessible and easier to use.

“This compact device is so easy to tuck in a pocket or purse and I am hopeful it will further increase compliance and bring an even larger reduction in migraine attacks to patients,” said Dr. Pierre Rigaux, Chief Executive Officer of Belgium-based Cefaly Technology.

“Now that the device is so small, it’s a big deal because patients can have their Cefaly II with them wherever they go, which means they’ll be able to use it more readily, at their most convenient time.”

cefaly technology image

The Cefaly II uses a magnet to attach itself to a self-adhesive electrode worn directly on the forehead. The rechargeable, battery powered device sends tiny electrical impulses through the skin to desensitize the upper branches of the trigeminal nerve and reduce the frequency of migraine attacks. Patients have full control of their daily 20-minute session and can ramp up the intensity to their own comfort level.

In a small study of 20 migraine sufferers, published in The Journal of Headache and Pain, the Cefaly I provided "statistically significant" pain relief and an 81 percent reduction in the number of migraine attacks. Patients in the study also said they used significantly less migraine medication.

The electrode and output of the Cefaly II is identical to the Cefaly I, according to the company.

Here’s a company produced video of how the Cefaly II works:

The Cefaly II is only available by prescription and costs $349, with a 60-day money back guarantee. The device can be ordered online by clicking here. The Cefaly I will no longer be offered, but the electrodes for it will be available for another 5 years. Cefaly Technology has sold about 20,000 of the devices in United States and 80,000 outside the U.S.

Migraine is thought to affect a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. It affects three times as many women as men. In addition to headache pain and nausea, migraine can also cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound.

How Curcumin Helped My Chronic Pain

By Judie Plumley, Guest Columnist

In 2013 I had a spinal fusion, 7 months after I had transvaginal mesh removal and reconstruction surgery.  During the operation, I contracted a severe bacterial infection in my spine called methicillin-resistant Staphylococcus aureus (MRSA). 

To make a long, painful story short, I ended up having 5 more spinal surgeries in the next year.  They did not get rid of the infection until it had liquefied 2 vertebrae and surrounding tissue. It almost killed me. 

There is extensive nerve damage, and my back is filled with rods and screws. 

During the worst of it I was on fentanyl, Dilaudid, Demerol, gabapentin (Neurontin) and oxycodone.  I spent 2015 weaning myself off the narcotics.  I was losing my insurance and I knew if I didn't, I would be in a withdrawal from hell.

I did go to two pain clinics, but just simply refused to be treated like a criminal.  I started exploring other options to deal with my pain.

Judie Plumley's spine

Since my son is a massage therapist, the first thing I started as soon as I was able was to get weekly massages while I healed.  Joseph stretched the forming scar tissue in order to allow me to move.

Next, I started using kratom, a half teaspoon twice a day.  I was amazed by the effect.  It knocked out a considerable amount of pain, but I was still spending 12 to 14 hours in bed each day.

About 2 months ago, my sister told me to try a supplement that combined curcumin – a yellow spice -- with black pepper oil. I bought it from Amazon, $15 for 120 caps. 

I am amazed with the results!  My pain is now bearable.  I can do about twice as much as I could before, and I am spending much less time in bed.

I am now in the process of getting off the gabapentin, but it is much harder than any of the narcotics.  The withdrawal is horrible.  As soon as this devil is off my back, I am done with doctors and hospitals.

curcumin

I refuse to be treated like a drug addict or a criminal.  I believe pain clinics are nothing more than a scam and that drug companies intentionally add things to their drugs to make people addicted. The antidepressants that are taking the place of opiates are even worse! Ever heard of a brain zap?

I swear, they are trying to kill us, or drive us to kill ourselves.  I don't understand why they are attacking people in chronic pain.  It's a terrible way to live.  I am lucky I have my son, a good support system, and have found something that works.  Life is hard enough as it is.

I have kept a journal since 2014.  I plan to write a book about my experience with MRSA.  Unless you’ve had it, you have no idea how dangerous and painful it is.

Judie Tucker Plumley lives in Georgia.

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.

Benefits of 'Sunshine Vitamin' Not So Clear

By Pat Anson, Editor

Maybe Vitamin D isn’t all it’s cracked up to be.

We’ve reported on several studies showing that low levels of Vitamin D are linked to a variety of chronic pain conditions, as well as anecdotal reports that taking Vitamin D supplements can relieve pain and make you feel better.

But a Canadian researcher says there is very little evidence that the “sunshine vitamin” does any of that.

"Wouldn't it be great if there was a single thing that you or I could do to be healthy that was as simple as taking a vitamin, which seems benign, every day? There is an appeal to it. There is a simplicity to it. But for the average person, they don't need it," says Michael Allan, a professor of Family Medicine and director of Evidence Based Medicine at the University of Alberta's Faculty of Medicine & Dentistry.

Allan is the lead author of a review published in the Journal of General Internal Medicine that examines the evidence for 10 common beliefs about vitamin D. Those beliefs include the ability of vitamin D to prevent rheumatoid arthritis, treat multiple sclerosis, reduce falls and fractures, and improve depression.

The review found little evidence that Vitamin D supplements have much effect at all.

"Even areas that we really thought there was good evidence for benefit early on, don't seem to be bearing out," says Allan. "It makes it really difficult to determine a lot of time if there is anything substantial there that you could tell a patient, 'You can take this and it can help you this much.' There's really not nearly enough there to say that."

Allan and his colleagues did find evidence that Vitamin D can have an impact in reducing the number of falls and fractures among the elderly. But the effect is minor.

"Many people would say taking a drug for 10 years to stop one in every 50 fractures is probably not enough to be meaningful. And that's the best vitamin D gets as far as we know now," he said.

There have been over 1,600 studies conducted on Vitamin D in the last decade alone, but Allan says much of the research was poorly executed and is of low quality. He doesn’t dispute the overall health benefits of Vitamin D – such as building strong bones and teeth -- but thinks taking supplements is unnecessary and could even be harmful in large doses.

Most people get all the Vitamin D they need by being exposed to ultraviolet rays in sunlight. You can also get it by eating foods rich in Vitamin D, such as oily fish and eggs.

“Evidence does not support vitamin D supplementation for the treatment of multiple sclerosis and rheumatoid arthritis or for improving depression/mental well-being. Regular testing of 25-hydroxyvitamin D is generally not required, and mega-doses appear to increase harms,” Allan said. “Much of the evidence is at high risk of bias, with multiple flaws, including analyses of secondary endpoints, small and underpowered studies, inconsistent results and numerous other issues. Therefore, enthusiasm for a vitamin D panacea should be tempered.”

Despite the lack of evidence, belief in the benefits of vitamin D supplements remains strong. Allan believes much of it stems from misplaced trust in studies that show low vitamin D blood levels are linked with poor health. However, association does not prove causation.

"The 40 year old person is highly unlikely to benefit from vitamin D," says Allan. "And when I say highly unlikely, I mean it's not measurable in present science."

Pain Companion: How to Release Pain

By Sarah Anne Shockley, Columnist

In all the discussions about pain medications, various approaches to healing and alternative treatments, we don’t want to overlook a key aspect of the nature of pain.

Chronic pain is a messenger. It is here because it has something to say.

Giving pain a voice helps it, in incremental stages, to complete, release and move on.

What does it mean to give pain a voice? You may already be familiar with journaling and finding someone to tell your pain story as ways to relieve the emotional ramifications of living with chronic pain. They are excellent and I highly recommend them, but that’s not what I’m talking about here.

Rather than expressing how you feel about pain, I recommend finding ways to let pain express itself. Think of it as allowing the part of you that is experiencing physical pain to express from within the pain and as the pain.

For example: the next time you decide to journal, instead of writing about your feelings and experiences, try taking a deep breath and stepping into the pain.

I know, at first you may think, yuck, why would I step into my pain? It’s already hard enough to live with it. But bear with me.

From the experience of being within the pain, begin to write what pain wants to say. Write as if you are the pain speaking. Write about what pain feels like to be in your body, what pain wants, and what pain is trying to accomplish by being there. Don’t try to figure this out in your head. Just go into a slightly altered state of consciousness and let the words flow, even if they seem like nonsense at first.

Ask your pain questions, and let it respond. Who are you? What are you? What are you doing in my body? What do you really want? How can I help? How can I soothe? How can I heal?

If it’s difficult to step out of your thinking mind and you find yourself trying too hard to come up with answers for pain, try writing with your non-dominant hand.

The first time you express yourself as pain may feel a little strange or silly, and you may come up blank at first. Just be patient. Pain isn’t used to being listened to in this way. It might take a moment for it to register that you actually want to hear what it has to say.

Experiment with other ways to let pain express too.  Instead of journaling, you can try speaking for pain. Designate a chair in the room as pain’s chair for a moment. Then go sit in it and speak into the room as pain (or do this from bed if you aren’t mobile right now). Just let the words flow.

Pain may surprise you. It may express as very angry about being stifled all the time. Or very tender. Or confused. Or incredibly sad.

Don’t try to analyze it while it’s happening. Just let pain express as pain wants to, however that is. Right now, even though pain feels like a nasty invader, it’s living in your body and it’s a part of your experience that needs to be heard. It’s part of you expressing as pain.

Another way to express pain is to use your voice to express pain as a sound. You might want to wait until you’re alone for this one.

Again, take a breath and go into the experience of pain in your body, and then begin to hum from that place. Experiment with very high and very low pitches. Let the hum express the sound of pain. Then, if you’re feeling adventurous, let the humming morph into other sounds: moans, groans, high pitched whines, sobs, sighs -- whatever sound wants to come from the pain in your body.

It’s most freeing to just let the sounds come out in whatever form they want to take, whether loud or soft. If you’re self conscious or there are others in the house you don’t want to disturb, you can make the sounds into a pillow. Just make sure you’re listening. You are the most important person to hear the sounds of your own pain. It is a way of witnessing, validating, and releasing the pain you’re in.

Do this for as long as you want (or until the dog starts howling). If you’re musically inclined, you might want to make up a song of lament or a song of freedom. Give pain the stage for a few moments.

This may strike you as naively over simplified, but I have found throughout my pain journey that the most potent remedies for ongoing pain are very straightforward and simple. Rest often. Reduce stress and stay as calm as possible. Release held or restricted breath and allow its life-giving and healing force to move more freely through you body. And give pain a voice.

Remember, probably no single thing you do to heal, soothe, express or release your pain is going to be the whole story of your healing. Chronic pain is multi-leveled and complex. Yet all of the simple, yet profound practices we put into effect on a daily basis have a positive cumulative effect. I can testify to that.

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.

Migraines Linked to Low Levels of Vitamin D

By Pat Anson, Editor

Low levels of Vitamin D have been associated with fibromyalgia, rheumatoid arthritis, multiple sclerosis and other chronic pain conditions. And new research suggests the “sunshine vitamin” may play a role in preventing migraines.

Researchers at Cincinnati Children's Hospital Medical Center found that a high percentage of children, teens and young adults with migraines appear to have mild deficiencies in vitamin D, riboflavin and coenzyme Q10. The latter is a vitamin-like substance found in cells that is used to produce energy for cell growth and maintenance.

"Further studies are needed to elucidate whether vitamin supplementation is effective in migraine patients in general, and whether patients with mild deficiency are more likely to benefit from supplementation," says Suzanne Hagler, MD, a Headache Medicine fellow in the division of Neurology at Cincinnati Children's Hospital Medical Center. She presented her findings at the annual meeting of the American Headache Society in San Diego.

Hagler studied a database of patients with migraines who had their blood levels checked for vitamin D, riboflavin, coenzyme Q10 and folate, all of which have been linked to migraines in previous and sometimes conflicting studies.

Many of the patients were put on migraine medications and received vitamin supplementation, if their blood levels were low. Because few received vitamins alone, the researchers were unable to determine if vitamin supplements by themselves were effective in preventing migraines.

Hagler found that girls and young woman were more likely than boys and young men to have coenzyme Q10 deficiencies. Boys and young men were more likely to have vitamin D deficiency. Patients with chronic migraines were more likely to have coenzyme Q10 and riboflavin deficiencies than those with episodic migraines.

Vitamin D helps control levels of calcium and phosphate in the blood and is essential for the formation of strong bones and teeth. Vitamin D also modulates cell growth, improves neuromuscular and immune function, and reduces inflammation

Sources of Vitamin D include oily fish and eggs, but it can be difficult to get enough through diet alone. Ultraviolet rays in sunlight are a principal source of Vitamin D for most people.

Danish researchers found that exposure to sunlight may delay the onset of multiple sclerosis (MS). Patients who spent time in the sun every day during the summer as teenagers developed the disease later in life than those who spent their summers indoors.

Low levels of serum vitamin D were found in over 1,800 fibromyalgia patients in a recent meta-analysis (a study of studies) published in the journal Pain Physician. Researchers at National Taiwan University Hospital found a “positive crude association” between chronic widespread pain and hypovitaminosis D.

Pain News Network columnist Crystal Lindell began taking Vitamin D supplements when her blood levels were found to be very low. Within a few months she was feeling better, exercising more, and losing weight. You can read Crystal’s story by clicking here.

5 Tips on Leaving Your Career Due to Health Issues

By Ellen Lenox Smith, Columnist

Leaving your career due to chronic pain and illness can be heartbreaking, but for some of us it’s a necessary step.

There was never a day in my life as a teacher that I didn’t love getting up and going to work, yet that career had to end due to the progression of Ehlers Danlos syndrome and sarcoidosis. I felt so lost and not sure who I would be without the career I had.

So, one day before retiring, I went for a walk at the Scituate Reservoir in Rhode Island with my dogs at the time, Corey and Carmel. I made the decision to not think about all the emotions entering my mind -- trying to push those negative thoughts away so I could de-stress. I only allowed myself to look and listen to nature.

Within minutes, I started to have words and thoughts come into my head. Before I knew it, I had to come home, sit at the computer and start writing. The first of what turned out to be over a hundred poems poured out of me. I always laugh when I share this experience, for I am not particularly into poetry.

This was the first of my eventual one hundred poems, which helped cleanse my emotions and prepare for announcing my need for retirement and a life with two progressive conditions:    

ELLEN LENOX SMITH

I Attended a Concert This Morning

It was that time to escape, to go for an adventure. We were attending a concert. All ten of our legs got into the car to begin the trip. No clues had been provided to us to prepare for what an impact this performance would have on the rest of our day.

We arrived, opened the door and got out, some of us more easily than others, and then shut the door off from life as we knew it…

It seems that we were late for the concert. It was already in progression. We knew when we arrived that we would have to follow the rules. We had to turn off everything from our lives; the cell, the TV, the radio, computer and most importantly, “the mind”.

We began to walk and quickly heard the concert. It felt loud and overwhelming at first. It felt crowded listening to it despite a lot of space provided. It was too much to hear, too much to absorb. And “the mind”, it wanted to come on, even though it knew it wasn’t invited. But it seemed to finally learn how to respect the rule.

As it cooperated, the concert began to take on a new dimension of sounds and feelings. It became soft, clearer, calmer and incredibly comforting. This concert became exceptional, being absorbed in every space of the mind and body.

And all that was needed to feel this was to just turn off everything else.

The concert never came to a close, but it was time we return to the car and journey back to home as we know and love it. But, we knew we had had an experience that gave us strength and renewal to our lives.

Corey, Carmel and Mom all took a moment to enjoy nature and listen to the truth of life. It was a concert that will never be forgotten. A lesson was learned, “turn it all off”, attend the concert of nature. It’s there for us all and is open at all times.

Looking back, I learned that writing about my emotions helped me face the changes that were happening to my life. It was a very cleansing process that I entered and I continue to do it.

Here are some tips if you are also dealing with the loss of your career:

1. Try writing down emotions that are swirling in your head. You will gain more than you might realize with this process. Many write to the US Pain Foundation for help and I respond to them, but often I do not hear back from them. I believe this is because they’ve cleansed their emotions by just writing down their story and frustrations.
2. Accept that you will have to redefine who you are. I was a teacher by profession, but have discovered I am still teaching, just in a different way.
3. Remember you are not alone for many have also had to face the loss of their career. Try to find comfort in knowing this. I talk to myself and say that if they can do this, so can I!
4. Mourn your losses. You are human and allowed to do this, but remember to move on from this loss too. You are more than your career. There are others things in life that will make you feel worthwhile and productive. It will take work to figure out what you will do next, but it is a worthwhile effort.
5. Try to not get stuck on “Why me?” Instead, try to find a way to move on with acceptance and grace for others to learn from. I always remind myself that although my four sons are now adults, they are still observing how I handle my life, including this process of letting go and redefining. I want to be remembered by them for trying, fighting and not giving up.

I know it is heartbreaking to have to step away from a career, especially if it is one you love. But you also have to remind yourself that you have one life to live, and you need to redefine yourself and find things that will bring meaning, joy and happiness back, despite the loss.

I know this is hard to do, but the effort will pay off in the end. Despite illness, you can discover new things about yourself and have a positive impact in life. Be strong, reach out for support and may you, too, discover there is life despite your huge loss.

Ellen Lenox Smith 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.

Ellen recently published her new book, “It Hurts Like Hell!: I live with pain -- and have a good life, anyway.”

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.