Scientists Use Light and Sound to Reduce Pain

By Pat Anson, Editor

British researchers have found that pain can be significantly reduced if the brain if “tuned in” to a particular frequency, a discovery that could potentially lead to new visual and sound therapies to treat chronic and acute pain.

"This is very exciting because it provides a potentially new, simple and safe therapy that can now be trialed in patients,” said Professor Anthony Jones, director of the University of Manchester Pain Consortium. “The potential is for this to be another treatment for chronic pain.”

Jones and his colleagues say nerve cells in different parts of the brain communicate with each other using different frequencies.  

Nerves in the front of the brain associated with a placebo analgesic effect are tuned in at 9-12 cycles per second, and apparently use that frequency to influence how other parts of the brain process pain.

To test their theory, researchers had 64 healthy volunteers wear goggles and headphones, and exposed them to different flashing lights and sounds while heat pain was induced with a laser on the back of their arms.

The volunteers who were exposed to an alpha frequency at 9-12 cycles felt significantly less pain than those who were exposed to other light and sound levels.

“This study provides new evidence that visual and auditory entrainment in the alpha range can influence the perception of acute pain independently of arousal and negative emotional influences,” the researchers said. “Overall, visual entrainment produced a larger effect than auditory entrainment in the mid- and lower alpha frequencies. This provides further evidence that external stimulation can modulate pain perception and requires further study to ascertain its relevance to clinical pain states.”

Further studies are needed to test the effectiveness of alpha wave therapy in patients with different pain conditions. Researchers say the simplicity and low cost of the technology should facilitate more clinical studies.

"It is interesting that similar results were obtained with visual and auditory stimulation, which will provide some flexibility when taking this technology into patient studies,” said Dr. Chris Brown, a lecturer in Psychology at The University of Liverpool who was involved in the research. “This might be particularly useful for patients having difficulty sleeping because of recurrent pain at night."

The study, which was self-funded as part of a PhD project, is being published in the European Journal of Pain.

Safety Tips for Living with Ehlers-Danlos Syndrome

By Ellen Lenox Smith, Columnist

Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe.

EDS is a condition that leads to deformed connective tissue, the “glue” that holds the body together. Any sudden move or jolt, and your muscles and joints may come apart.

There is no cure for EDS, so living life with this condition means accepting a certain level of chronic pain.

I want to share some safety tips that I have learned that I hope will help others, like myself, who have EDS.

Car Safety

To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.

We ended up with a Prius recently and I realized I had to have the seat changed. Although the height was correct, I had to lift myself into the seat due to the design that sinks in from a lip on the side. We were able to find a person that could reconstruct the seat, making the entire surface flat.

To get into the car with the least chance of slipping out of position, I sit down on the seat, turn towards the front of the car and then I swing my legs into the car.

Check and see where your legs are when you sit down. It is best if they are at a ninety degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble.

Reaching

If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.

That will cause what is called an "up-slip," where the femur jams up into your hip. It does not hurt at first, but tends to show up the next day and is very uncomfortable. To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Have someone check to see if your ankle bones meet. If there is an upslip, there will be a difference in the leg lengths. Get it corrected as soon as you can before it creates significant pain.

Opening Cans

Using downward pressure while attempting to open a can with a can opener can cause you to potentially sub lux your hand, fingers, elbow and/or shoulder. A simple fix to this is to purchase a product called the Handy Can-Opener. All you do is set it on the top on the can, press a button and let it do the magic of opening the can for you!

Sleeping Safely with POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that causes light-headedness, fainting, unstable blood pressure, abnormal heart rates, and sometimes even death.  I learned I had it in my 60’s.

I was instructed to sleep at a 30 degree angle by raising the entire frame of the bed at the head. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?

We found out from a physical therapist that there are bed raisers sold that college students use to raise their dorms beds up to be able to store items underneath. We purchased four plastic bed raisers and found that if we use two on each of the head corners, we are able to raise hotel beds up for me to simulate some of the height we have at home.

It is not as high as my bed, but certainly better than sleeping flat with POTS. You might want to check with the hotel or motel to ensure access to a bed which can be adjusted in this manner.

Greeting Friends and Family

If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.

The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”

Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you my mistake.

Twisting

I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.

When sitting, It is also important to not cross your legs, for this can throw your sacrum out of place.  

Shoes

If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also find sandals that have a good arch when you are not able to wear sneakers.

Trachea and Neck Stability

I have spent many years dealing with a trachea and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine,I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the air flow has decreased or cut off.

I am now a proud owner of a new pillow another EDSer discovered that is holding the neck and head in the correct position and not allowing the trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.

Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.

Carrying Objects

For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying a luggage with wheels, like you see in the airport.

I don’t know why I hadn’t thought of that sooner. I used to carry 125 students essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.

I hope these tips will be of help and hope you will comment and leave tips you have discovered. We need to help educate each other for a safer and less painful 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.

Low Impact Exercise Reduces Pain in Seniors

By Pat Anson, Editor

Even a modest amount of exercise is effective at easing pain from arthritis, and other muscle and joint conditions in older adults, according to the latest study by the Hospital for Special Surgery (HSS) in New York City.

Since 2011, HHS has offered free, low-impact exercise programs at senior centers in Chinatown, Flushing, and Queens – and tracked the health of those who participated. Researchers presented their latest findings at the annual meeting of the American Public Health Association in Denver.

"Joints will often stiffen if not used, and muscles will weaken if not exercised. Our bodies are meant to move, and inactivity leads to weakness and stiffness, and joints with arthritis often worsen with inactivity," said Theodore Fields, MD, director of the Rheumatology Faculty Practice Plan at HSS.

The exercise program takes place once a week for eight weeks. Participants perform chair and floor mat exercises using stretch bands and other gentle exercises led by certified bilingual instructors.

The program was originally developed for Asian seniors 65 and older, many of whom live in poverty and suffer from arthritis and musculoskeletal conditions.

A survey was distributed to participants before classes began and after they ended to evaluate pain, physical function, stiffness, fatigue, balance and other health indicators. A total of 256 adults completed the questionnaires, the vast majority of them elderly women.

HOSPITAL FOR SPECIAL SURGERY IMAGE

"Overall, the program was very well-received," said Minlun (Demi) Wu, an HHS research coordinator. "After completing the classes, statistically significant differences were found in pain intensity, physical function, balance, and confidence about exercising without making symptoms worse."

Eight out of ten participants said they had less pain after participating in the program. Over 90 percent said they had less stiffness, fatigue and their balance improved. There was also significant improvement in their ability to perform daily activities, such as lifting or carrying groceries; climbing stairs; bending, kneeling and stooping; and bathing and getting dressed.

"The study results are consistent with the experience of rheumatologists and with prior studies showing that exercise, even of mild degree, helps with pain," said Dr. Fields. "Getting people up and moving does appear to help with mood, pain and overall functioning."

"Our findings indicate that implementing a bilingual low-impact exercise program can play an important role in pain relief, improved quality of life and improved levels of physical activity in the underserved Chinese community," said Wu, adding that the classes have become so popular there is a waiting list.

According to the CDC, Asian seniors have some of the highest rates of physical inactivity. Chinese Americans are also less likely to seek health care because of cost and language and cultural barriers.

Would This Meal Give You a Migraine?

By Pat Anson, Editor

The dinner on the right looks inviting – but to some people prone to migraines it could leave them with a bad headache.

Many migraine sufferers have learned to avoid or limit their consumption of foods and beverages that can cause a migraine attack. Wine, chocolate, coffee, nuts, and milk are often named as likely triggers, but did you know that some diets can actually help prevent migraines?

The role of diet in the treatment and prevention of migraine is poorly understood and somewhat controversial in the field of headache medicine because few rigorous studies have been performed.

In an effort to bring some clarity to the issue, two professors at the University of Cincinnati College of Medicine performed a comprehensive review of over 180 research studies on the subject of migraine and diet. Their two-part review, "Diet and Headache" is being published online in Headache: The Journal of Head and Face Pain. You can also see it by clicking here and here.

"One of the most important triggers for headache is the withdrawal of caffeine," says Vincent Martin, MD, a professor in the Department of Internal Medicine at the University of Cincinnati (UC) College of Medicine. “Let's say you regularly pound down three or four cups of coffee every morning and you decide to skip your morning routine one day, you will likely have full-fledged caffeine withdrawal headache that day."

Martin and co-author Brinder Vij, MD, an associate professor in the UC Department of Neurology and Rehabilitation Medicine, say there are two different approaches to preventing headaches with diet. The first is an elimination diet that avoids foods and beverages known to trigger headaches. The second approach is to adopt low fat and low carbohydrate diets that may actually help prevent headaches.

"The beauty of these diets is that they not only reduce headaches, but may produce weight loss and prevent heart disease," says Vij.

One of the most promising diets for those with frequent migraine attacks is one that boosts omega-3 fats while reducing omega-6 fatty acids. That means avoiding polyunsaturated vegetable oils (corn, sunflower, safflower, canola and soy) in favor of flaxseed oil. Foods that are rich in omega-3 fats include flaxseed, salmon, halibut, cod and scallops, while foods to avoid would be peanuts and cashews.

Martin and Vij say gluten-free diets are only helpful in lessening headaches if someone suffers from celiac disease, which can be established through a blood test or intestinal biopsy.

Other foods to avoid include anything with monosodium glutamate (MSG), a flavor enhancer used in many processed foods, including frozen or canned foods, soups, snack foods, salad dressing, seasoning salt, ketchup, barbecue sauce, and in some Chinese cooking.

"You eliminate it by eating fewer processed foods," explains Martin. "You eat more natural things such as fresh vegetables, fresh fruits and fresh meats. MSG is most provocative when consumed in liquids such as soups."

About 5 percent migraine suffers are likely to have an attack on days they consume nitrites, a preservative often used in processed meats such as bacon, sausage, ham and lunch meat. The use of both nitrites and MSG has declined, but Martin says checking food labels is a good idea.

Alcohol is another headache trigger for about a third of migraine sufferers, and studies suggest that red wines, especially those with high histamine content, are the worst. Interestingly, one study found that beer was associated with fewer headaches and migraines.

"Persons with headache and migraine have more dietary options than ever. Ultimately a healthy headache diet excludes processed foods, minimizes caffeine and includes a lot of fruits, vegetables, fish and lean meats,” Martin says.

Martin and Vij say identifying dietary triggers is challenging because there are so many different foods and ingredients that migraine sufferers are exposed to. They recommend keeping a food diary to help determine which foods to eliminate.

“It is not reasonable for persons with headache to avoid all know dietary triggers, as individuals may only be susceptible to a small number of foods or beverages,” they wrote. “The triggers could be identified by simple observation if the association is strong or through the use of a food diary if it is less obvious. The ideal would be to use a food diary as part of an app that would then determine statistically if a given food or beverage was associated with headache.”

Migraine affects about three times as many women as men. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. About half of people living with migraine are undiagnosed.

What Grade Should Your State Get for Pain Care?

By Pat Anson, Editor

Millions of Americans who suffer from chronic pain are having trouble finding doctors, obtaining pain medication, and getting health insurance to cover their treatment. So imagine their surprise when a recent study gave passing grades to all 50 states for their pain care policies and said there was “an overall positive policy environment across the nation.”  

“We saw that report and were disgusted. At a time when chronic pain patients across the country are losing their medications and treatments to manage their pain, giving no state a grade below a 'C' is insulting,” said Amanda Korbe, who suffers from Reflex Sympathetic Dystrophy (RSD) and is a founder of Patients Not Addicts, a patient advocacy group.

“Achieving Balance in State Pain Policy” was released over the summer by the Pain and Policy Studies Group at the University of Wisconsin School of Medicine. The report looked at state laws and regulations in 2015 that governed drugs, prescribing and pain care practices.

“This evaluation is meant to identify relevant language in each state’s legislation or regulatory policies that have the potential to influence appropriate treatment of patients with pain, including controlled medication availability,” the study says.

The study gave 13 states an “A” for the quality of their pain care policies:  Alabama, Georgia, Idaho, Iowa, Kansas, Maine, Michigan, Oregon, Rhode Island, Vermont, Virginia, Washington and Wisconsin.

Thirty-one states were given B’s and the rest got C’s. No state was given a failing grade. A complete list of grades for all 50 states and Washington DC can be seen at the end of this story.

“I know that as an Oregon chronic pain patient, I can say my state does not deserve an 'A' right now. We have too many under treated patients, and too many that can't get care at all. For those of us that can't get proper pain management, these high grades are a slap in the face. It invalidates our experiences and struggles to get proper pain management,” said Korbe.

“Would pain management be in such a sorry state if these ‘grades’ actually meant anything? I personally think they are worthless,” said Janice Reynolds, a retired nurse, pain sufferer and patient advocate in Maine, which received an “A” grade.  

Rather than look at state policies and regulations, Reynolds said the study would be more meaningful if it examined whether opioids were being prescribed appropriately, if patients were having a difficult time finding providers, and if untreated pain was leading to more suicides.

“Every state would get a D or F if this was done,” she said.

Study Looked at Pain Policy, Not Practice

“To really look at this comprehensively, it requires a broader analysis to really get an understanding of things,” admits Aaron Gilson, PhD, the lead researcher for the study, which was funded by the American Cancer Society.

Gilson told Pain News Network the study only looked at state policies and regulations as they exist on paper – not how they were being implemented or even if they were effective.

“There’s not necessarily a 100% correlation between policies and practice. The policies in and of themselves don’t create barriers to pain management that we’ve identified. The grade that each state earned is really based on policies that can improve pain management for patients when put into practice,” he said.  

“Sound policy that's not implemented is only words wasted,” says Anne Fuqua, a pain sufferer and patient advocate, whose home state of Alabama was given an “A” grade.

“I'd give Alabama a 'C' for being better than the worst states like Ohio, Kentucky, Tennessee, Florida, West Virginia, Washington, and Oregon.  On paper the policy is excellent and it deserves the 'A' it gets. It just needs to be implemented.”

The study also didn’t look at insurance reimbursement issues or how doctors are responding to federal policies such as the CDC’s opioid prescribing guidelines, which were not released until this year and are having a chilling effect on both patients and doctors.    

Gilson said the methodology used to prepare the next pain care policy report – which was first released in 2000 – probably needs to be updated.

“That’s the first order of business in terms of continuing to do this, to really understand how policies have changed,” Gilson said. “I think it’s really time to examine the criteria that we use to see to what extent we might be missing policy because we’re not looking at the right thing, because barriers are erected in other ways than when we constructed this type of evaluation 16 years ago.”

Patient Survey Underway

One way to better understand those barriers is to simply ask patients what they are experiencing.

“Legitimate patients report the entire move to reduce (opioid) production and restrict prescribing is having a profoundly negative impact on their treatment protocols. Understanding how they are being impacted is important,” says Terri Lewis, PhD, a patient advocate and researcher.

Lewis is conducting a lengthy and detailed 29-question survey of pain patients to see how they are being impacted by efforts to reduce opioid prescribing. To take her online survey, click here.

Lewis will be able to breakdown the data state-by-state to get a real indication of how pain care policies and practices are being implemented.

“We will get that patient voice into this conversation,” she says. “Reports from patients are important and add value to the public conversation.  Reports will be analyzed and compared to months long data collection to look at trends, the impact of increasing restrictions, the fear of physicians to treat patients in this climate, and the influence of other factors like insurance restrictions and red flagging. This is a complex problem.”

SOURCE: PAIN & POLICY STUDIES GROUP, UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE

Study Shows Potential for Early Diagnosis of Arthritis

By Pat Anson, Editor

A new study by British researchers has demonstrated the potential for an experimental blood test that can diagnose arthritis in its earliest stages. Such a test could lead to earlier treatment of osteoarthritis (OA) and rheumatoid arthritis (RA), years before joint damage and physical symptoms begin.

Researchers at Warwick Medical School recruited 225 people with early or advanced OA, RA or another inflammatory joint disease, along with a control group of healthy volunteers with no joint problems.  Their blood and fluid from affected knee joints were then analyzed with mass spectrometry.

The test found patterns in blood plasma amino acids that were damaged by oxygen, nitrogen and sugar molecules. The damage was highest in the blood samples of patients with OA or RA, and markedly lower in the blood of healthy volunteers -- giving researchers identifiable biomarkers that could be used for an early diagnosis.

“This is a big step forward for early-stage detection of arthritis that will help start treatment early and prevent painful and debilitating disease,” said Naila Rabbani, PhD, of Warwick Medical School. “Damage to proteins in the arthritic joint have been known for many years but this is the first time it has been exploited for early-stage diagnosis.

“For the first time we measured small fragments from damaged proteins that leak from the joint into blood. The combination of changes in oxidised, nitrated and sugar-modified amino acids in blood enabled early stage detection and classification of arthritis – osteoarthritis, rheumatoid arthritis or other self-resolving inflammatory joint disease."

Dr. Naila Rabbani of Warwick Medical School

Rabbani says the blood test could be available to patients within two years. Her study is published online in Arthritis Research and Therapy.

Osteoarthritis is a progressive joint disorder caused by painful inflammation of soft tissue, which leads to thinning of cartilage and joint damage in the knees, hips, fingers and spine. The World Health Organization estimates that about 10% of men and 18% of women over age 60 have osteoarthritis. There currently is no diagnostic blood test for osteoarthritis.

Rheumatoid arthritis is a chronic autoimmune disease in which the body’s own defenses attack joint tissues, causing swelling, inflammation and bone erosion. About 1.5 million Americans and 1% of adults worldwide suffer from RA.

A blood test for RA is already on the market in the United States, Canada, Europe, Japan and Australia. The JOINTstat test looks for a protein that is usually found at high levels in the joints of people with RA.

How to Improve Self-Care and Coping at Home

By Barby Ingle, Columnist

Whether you are in pain or caring for someone in pain, it often seems the weight of the world is on your shoulders.

Want to know some ways to lighten that load?

The Chronic Care in America survey was conducted by Harris Interactive in 2002, but still holds some valuable lessons.

The survey of over 3,000 chronically ill patients found that those who were who were organized and made lifestyle changes at home were more likely to be free of depression and to live healthier lives.

They were proactive and knowledgeable, and firmly believed their lives still had value and purpose.

I have my own list of things that I’ve done at home to improve my self-care and coping skills over nearly 20 years of living with chronic pain diseases.

The Bedroom

In the bedroom, the most used room in the house, I created a blanket support frame so that the weight of blankets or sheets does not rest directly on my feet.  I used a body pillow for $7 from Walmart and put it at the bottom of my bed. The sheets and blankets go up and over and keep me warm, but without physical contact with my feet.

You can also install blackout curtains in your bedroom so you have a quiet and dark place where you can retreat during breakthrough pain, migraines, etc. I did this throughout my entire house, which has helped so much on my severe migraine days. For safety, I added nightlights throughout the house so I can still walk around.

Keep commonly used items close to the bed for easy reach (remote control, medications, cup of water, reading materials, etc). Keep the floor from being cluttered to avoid tripping and falls. I even removed area rugs after a few trips and falls myself.

We all know how important sleep is. Keep your bedroom ventilated. Being too hot or too cold can interfere with quality sleep. Make sure your mattress is comfortable and use pillows that provide support as needed.

The Bathroom

The second most used room in the house is the bathroom. I found that drying with smaller towels so the weight of the towel doesn’t wear me out or drag across painful areas is extremely helpful. I also put small towels between me and the shower water when taking a shower, as the water drops can feel like thousands of needles poking me.

We also installed grab bars in the bathtub, shower and next to the toilet for when I am off balance and or having a migraine that has me seeing double. We also put a shower bench into the tub. I love it and so does my husband. This helps save energy pennies. Showers and baths can be one of the most draining activities we face.

My husband got me a hairdryer stand as a Christmas present a few years back. It is great -- no more having to try to hold my arms above my head. I can just sit in front of it and dry my hair with no effort. My dentist also suggested an electric toothbrush which has helped me improve my dental hygiene. And for the worst of worst days, I soak in Epsom salt baths to relax

The Kitchen

The third most used room of the house is the kitchen. I suggest you come up with easy to make recipes that are good for you and that you like. I found crock pot cooking is a great way to have a good meal and they’re easy to prepare.

Keep commonly used items at waist height so you don’t have to reach, which can increase pain and use up energy pennies. We switched out our smaller kitchen knobs for large knobs on the appliances and cabinet doors so they’re easy to open and close. Lightweight dishes and pots, as well as paper and plastic plates and cups, are also easier to use and inexpensive. They also have the bonus of when you drop them there is no glass to clean up.

Long handled brooms, dustpans and sponges make cleaning easier, and long-handled "grabbers" make it easier to reach items on high shelves or picking them up from the floor. Turntables on kitchen shelves make it easier to reach items in the back. My husband helps me split larger food items or food needing to be prepared in Tupperware. And my favorite kitchen tools are the electric can and jar openers.

I hope you find my tips helpful and that it sparks some ideas of your own so you can organize your own home. The goal is to have better daily living, spend less energy pennies, and have more time to do things that you actually want to do.  

You are worth the investment in yourself! It’s easy to put these steps on the backburner, but taking the time and energy now can help you feel better and may even help you live longer.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her 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.

Migraine Drugs No More Effective Than Placebo for Kids

By Pat Anson, Editor

Two medications commonly prescribed to prevent migraines in adults are no more effective than a placebo when given to children and teenagers, according to a new study published in The New England Journal of Medicine.

Researchers affiliated with the Childhood and Adolescent Migraine Prevention (CHAMP) study randomly assigned 328 children and adolescents into three groups. One group received a daily dose of amitriptyline (Elavil), the second group received topiramate (Topamax), and the third group was given an ordinary sugar pill.

After 24 weeks, 52 percent of those taking amitriptyline and 55 percent of those taking topiramate had a 50 percent or more reduction in the number of headache days.

But the sugar pill was more effective, with 61% of the placebo group reporting their number of headache days reduced by 50 percent or more.

Researchers say the expectation of responding to a medication may have surpassed the pharmacological effects of taking a drug.

"The study was intended to demonstrate which of the commonly used preventive medications in migraine was the most effective. What we found is that we could prevent these headaches with either a medication or a placebo," says Andrew Hershey, MD, co-director of the Cincinnati Children's Headache Center and senior author of the study. "This study suggests that a multi-disciplinary approach and the expectation of response is the most important, not necessarily the prescription provided."

The children taking amitriptyline or topiramate had a significantly higher rate of side effects, including fatigue, dry mouth and, in three cases, mood alteration. About a third of those taking topiramate had paresthesia, a "pins and needles" tingling sensation in their hands, arms, legs or feet.

"The interpretation of these results is very challenging. In most situations, trials that fail to show benefit of an intervention do so because study participants do not improve. That was not the situation here. A majority of all study participants improved, regardless of their assigned treatment group," says Chris Coffey, PhD, a professor of biostatistics in the University of Iowa's College of Public Health, who was lead statistician for the study.

Researchers say further studies are needed identify the best ways to treat pediatric migraines. Simply prescribing sugar pill would be unethical without the patient’s knowledge.

"Our national team was hoping to develop evidence to drive the choice by medical providers of the first line prevention medication for helping youth with migraine, but the data showed otherwise, says Scott Powers, PhD, a pediatric psychologist and co-director of the headache center at Cincinnati Children's.

"We see this as an important opportunity for health care providers, scientists, children, and families because our findings suggest a paradigm shift. First line prevention treatment will involve a multidisciplinary team approach and focus on non-pharmacological aspects of care."

One of the non-pharmacological therapies being used is cognitive behavior therapy (CBT). While CBT has not been directly compared to a placebo for pediatric migraines, neurologists and psychologists say it can be a helpful component in pain care.

As many as one out of five teens suffers from migraines, but treatment options are limited compared to adults.  Last year the Food and Drug Administration approved two new treatments for pediatric migraine. Zonig is a nasal spray that provides pain relief in as little as 15 minutes, while Treximet is a medication that contains sumatriptan and naproxen, a non-steroidal anti-inflammatory drug (NSAID). Both Zonig and Treximet have been available for years to treat adult migraine.

Migraine is thought to affect a billion people worldwide and about 31 million Americans adults. In addition to headache pain and nausea, migraine can also cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. About half of people living with migraine are undiagnosed.

Placebo Effect is All in Our Heads

By Pat Anson, Editor

A new study has given researchers a better understanding why some people given a simple sugar pill will say it significantly reduces their pain.

It’s all in their heads.

Using functional magnetic resonance brain imaging (fMRI), scientists at the Northwestern Medicine and the Rehabilitation Institute of Chicago (RIC) have identified for the first time the region of the brain that's responsible for the "placebo effect" in pain relief. It’s an area in the front part of the brain -- called the mid frontal gyrus -- that also plays a key role in our emotions and decision making.

In two clinical trials involving 95 patients with chronic pain from osteoarthritis, researchers found that about half of the participants had mid frontal gyrus that had more connectivity with other parts of the brain and were more likely to respond to the placebo effect.

The use of fMRI images to identify these “placebo responders” and eliminate them from clinical trials could make future research far more reliable. It could also lead to more targeted pain therapy based on a patient’s brain images, instead of a trial-and-error approach that exposes patients to ineffective and sometimes dangerous medications.

"Given the enormous societal toll of chronic pain, being able to predict placebo responders in a chronic pain population could both help the design of personalized medicine and enhance the success of clinical trials," said Marwan Baliki, PhD,  a research scientist at RIC and an assistant professor of physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine.

“This can help us better conduct clinical studies by screening out patients that respond to placebo and we can just include patients that do not respond. And we can measure the efficacy of a certain drug in a much more effective manner.”

Baliki told Pain News Network that differences in the brain could explain why some prescription drugs – such as Lyrica (pregabalin) – are effective in giving pain relief to some patients, but not for others.

“If we do the same with Lyrica, maybe we can find another area of the brain that can predict the response to that drug,” he said.

The study findings are being published in PLOS Biology.

"The new technology will allow physicians to see what part of the brain is activated during an individual's pain and choose the specific drug to target this spot," said Vania Apkarian, a professor of physiology at Feinberg and study co-author. "It also will provide more evidence-based measurements. Physicians will be able to measure how the patient's pain region is affected by the drug."

Currently, most clinical studies involving pain are conducted on healthy subjects in controlled experimental settings. Those experiments usually induce acute pain through immersion in cold water, pressure or some other type of applied pain. Baliki says there are significant differences between acute and chronic pain, and the experiments often translate poorly in clinical settings where pain is usually chronic.   

Do Scents Make You Sick?

By Pat Anson, Editor

One in three Americans suffers adverse health effects – such as migraines and asthma attacks – when exposed to air fresheners, cleaning supplies, perfume and other scented consumer products, according to a new study.

Researchers at the University of Melbourne polled over 1,100 Americans in an online survey and found that nearly all were exposed to fragranced products at least once a week at home, work, or in public places such as stores or hospitals.

Almost 35% reported adverse health effects such as breathing difficulties, migraine headaches, asthma attacks, skin rashes, dizziness, nausea, and other medical problems. For half of these individuals, the problems are so severe they are potentially disabling, as defined by the Americans with Disabilities Act.

"This is a huge problem; it's an epidemic," said Professor Anne Steinemann of the University of Melbourne School of Engineering, who is an expert on the health effects of environmental pollutants.

"Basically, if it contained a fragrance, it posed problems for people."

The study found that fragranced products may affect the bottom lines of many businesses. Over 20 percent of respondents said if they entered a store or business and smelled an air freshener or some fragranced product, they would leave as quickly as possible. And more than twice as many customers would choose hotels and airplanes without fragranced air than with fragranced air.

In the workplace, over 15% of respondents said they became sick, lost workdays or even lost a job due to exposure to fragranced products. Over half said they would prefer fragrance-free workplaces and health care facilities.

Even hygiene is impacted by fragrances. Nearly one in five said they are unable or reluctant to use toilets in public places because of the presence of an air freshener, deodorizer or scented product. And 14 percent said they would be reluctant to wash their hands in a public restroom because the soap might be scented.

“Adverse effects resulting from exposure to fragranced products, such as in workplaces and public places, raise concerns about liability,” said Steinemann. “For instance, individuals can suffer acute health effects, such as an asthma attack, if they enter a restroom that uses air fresheners. If they are unable to access a restroom due to the presence of an air freshener, then that poses a potential violation of the Americans with Disabilities Act.”

Two out of three survey respondents were not aware that fragranced products often emit hazardous air pollutants such as formaldehyde, and 72% were not aware that even so-called natural, green, and organic fragranced products emit hazardous air pollutants.

“Fragranced product manufacturers are not required to disclose all ingredients in their formulations. This lack of disclosure can impede efforts to understand and reduce adverse effects associated with potentially harmful compounds,” Steinemann wrote. “Further, we lack knowledge on which specific chemicals or mixtures of chemicals are associated with the adverse effects, and this is an important area for research.”

The study findings are published in the journal Air Quality, Atmosphere & Health.

Miss Understood: The Oska Pulse Trial

(Editor’s note:  Several weeks ago we were contacted by a representative for Oska Wellness, a San Diego company that makes the Oska Pulse, a wearable device that uses Pulsed Electromagnetic Field technology (PEMF) to treat pain. According to the company, the device dilates blood vessels and releases the body’s natural endorphins, which “has been shown to reduce joint and muscle pain by reducing inflammation.” It sells online for $399.

The company was invited and agreed to provide an Oska Pulse at no cost to PNN columnist Arlene Grau for a test run.)

oska wellness image

By Arlene Grau, Columnist

As many of my fellow pain sufferers know, when it comes to finding relief most of us are willing to try anything. In order to relieve my pain I go through a long list of pain relieving strategies, including a TENS unit, opioids and pain patches. So adding the Oska Pulse wasn’t anything new, especially since the directions were so easy to follow.

In the first weeks of treatment, it’s recommended that you use the device 4-6 times a day for half an hour. Although I don't work due to my being on disability, I'm still a busy mother of two, so this seemed a bit much for me. But I followed the guidelines to get the most out of my experience.

The Oska Pulse is very easy to use. You simply wrap it over the area you want to target, push the button, ensure it beeps and lights up, and the device does the rest. You don't feel or hear anything while it's on, except for when it shuts off, which is kind of nice because you can either relax while you wear it or go about your business. I used it for both my lower back and right hip.

After about a week, I was able to get some pain relief from the Oska Pulse. I wouldn't necessarily compare it to the relief I get from opioids, but it was enough to make me feel like I didn't need to take prescription drugs every 4 hours (which is a triumph). I only took them at bedtime or once or twice for breakthrough pain during the day.

I found that wearing the device 2-3 times in the morning when my back pain and hip are usually at their worst gave me the best results. Then I would wait a few hours and wear it again for one interval. At bedtime I would lay in bed and wear it another 2-3 times.

With the exception of how often I needed to use the device, which is what I think some people may be turned off by, I think the Oska Pulse really helps.

For those of you who work, you can actually wear the Oska Pulse over your clothing and still feel the effects of it. The benefits outweigh the inconvenience of wearing it.

I originally thought the Oska Pulse was not going to work for me, since I'm used to the TENS unit shocking my body and actually feeling something happening. You don’t really “feel” anything when the Oska Pulse is on, but I felt a difference after every use.

In my personal opinion, I think the Oska Pulse did a great job at temporarily relieving my pain and minimizing my inflammation.

Arlene Grau lives in California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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.

Unwilling to Suffer in Silence over Opioid Guidelines

By David Hendry, Guest Columnist

As an Army combat veteran, certified public accountant, law-abiding citizen and also a 70-year old arthritic, I am outraged by the restrictions imposed on primary care physicians for prescribing opioid pain medication.

The Centers for Disease Control and Prevention’s opioid guidelines are officially "voluntary" but have primary care physicians plainly scared about losing their licenses. My own physician, who has provided me with a low dose of Norco (and I have never asked for an increased dose), has suddenly found a host of reasons to discontinue it.

I listened carefully to this man I have known for years. He is not a very good liar. He is scared.

The "voluntary" guidelines seem to be saying to doctors: "Cooperate. We would not want anything to happen to your medical license, would we?"

That is the phrasing and logic of an extortionist.

How did Norco and heroin get lumped into the same set of statistics? I have even heard someone say, "Norco is a gateway drug to heroin.”

In fact, heroin has been a problem for decades. Actions to reduce its use have been ineffective and heroin has nothing to do with mild doses of relief for painful medical conditions that will never go away.

DAVID HENDRY

And how did I get statistically lumped in with addicts and criminals? The New England Journal of Medicine article "Reducing the Risks of Relief" acknowledges the opioid problem, but it is clear that there is not enough scientific evidence for such a "one size fits all" rule.

It is inhumane to remove pain relief and offer nothing as a replacement. Over-the-counter medications have their own problems and now we are told to go back to them? If they were effective, we would not need stronger medications.

The callous decision-makers (we're from the government and we are here to help!) exemplify the words of Francois de La Rochefoucauld: "We all have enough strength to endure the misfortunes of others."

We need a class action lawsuit to restore a reasonable balance between "pill mills" and the responsible use of narcotic pain relief. The class of people injured by the CDC guidelines and subsequent state-by-state actions include people like me, my wife (who suffers from post-polio syndrome), wounded veterans, and many others.

We are law-abiding Americans who recognize government over-reach and are unwilling to suffer in silence just because of a bureaucrat's decision.

David Hendry lives in Arizona. He has been a Chief Financial Officer and CEO for several mid-sized businesses. He also has a Master’s Degree in Health Care Management and a Master's in Education. David enjoys tennis, the outdoors and teaching, and is a proud Army combat veteran.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

No Increase in Physical Activity after Hip Replacement

By Pat Anson, Editor

A new study by British researchers has come to the surprising conclusion that physical activity such as walking and climbing stairs does not increase after hip replacement surgery.

Total hip replacement is one of the most common elective procedures. The surgery is usually performed on the elderly to relieve pain from osteoarthritis, which causes a loss of cartilage and joint function.

But in the first systematic review to examine the differences in physical activity both before and after hip replacement, researchers were left questioning the purpose of the surgery.

"The most common reason for a hip replacement is to reduce pain on movement. We expected that the amount of physical activity post-surgery would therefore increase. What we found surprised us," said lead researcher Tom Withers, from the University of East Anglia’s School of Health Sciences.

Withers and his colleagues looked at the physical activity of over 1,000 patients who had hip replacements, analyzing how far and how fast they walked, as well as cycling and climbing stairs.

"We found that there was no clear evidence of a change in physical activity following surgery,” said Withers. "The benefits of regular physical activity following a hip replacement are well known, so this research is important for healthcare professionals because it suggests that patients need to be encouraged to be more physically active."

The research findings are being published in the journal Clinical Rehabilitation.

"The lack of significant difference in physical activity after patients undergo such a common procedure suggests there is a need for further research, including further investigation into how other personal characteristics or pre-existing conditions might also influence the results,” says Toby Smith, a lecturer in physiotherapy in UEA's School of Health Sciences.

"Healthcare professionals and researchers need to better understand this lack of change and how patient's perceptions of physical activity might be modified to increase their engagement in physical activity post-operatively."

Recent studies in the United States have questioned whether many joint replacement surgeries are appropriate. A five year study of 175 knee replacement patients by the National Institutes of Health found that over a third of the surgeries were inappropriate. Many patients had pain and other symptoms that were too mild to justify having their knees replaced.  

About 30 million Americans have osteoarthritis, including a growing number of younger patients, aged 40 to 65. Doctors are often reluctant to perform hip replacement surgery on patients under age 50 because prosthetic joints typically last for less than 20 years. A second surgery to remove a worn prosthetic can destroy bone and put patients at risk for infection and other complications.

Indians Manager Battles Back from Chronic Pain

By Pat Anson, Editor

Cleveland Indians manager Terry Francona – who has led the Indians to their first World Series since 1997 -- has struggled for decades with chronic pain from knee, wrist and shoulder injuries.

His story is an inspirational one to pain sufferers who have also dealt with the stigma associated with chronic pain and the use of opioid pain medication.

Francona may be the front runner for American League manager of the year, but it wasn’t too long ago that he was barely able to walk after complications from knee replacement surgeries left him in severe pain with blood clots and staph infections.

His managerial career also seemed finished after rumors surfaced that he abused pain medication while managing the Boston Red Sox.

Francona was upfront about his health problems and use of painkillers like oxycodone and Percocet in his book with Dan Shaughnessy; “Francona: The Red Sox Years.”

“I think I probably should have died with all that happened,” Francona said of one extended hospitalization in 2002, when his right leg almost had to be amputated.

“There were a couple of nights in the hospital where I was thinking, I can’t take this anymore.  The nurses would come running in because I’d stop breathing. I was in bad shape. There were people around who did not think I was going to make it. I know I came real close to losing the leg.”

Pain medication helped him survive the ordeal.

TERRY FRANCONA

“I lived on it at that time,” Francona recalled in the book. “When I left the hospital, I was on heavy-duty drugs, and it was tough.”

Francona recovered and resumed his career as a baseball coach. In 2004, he was hired as manager of the Red Sox and led the team to its first World Series title in 86 years. They added a second title in 2007. Through it all, Francona was still in pain and taking so much medication he would sometimes joke about it. He also started hoarding pain pills.

When one of Francona’s adult daughters found a bottle in his home with 100 Percocet pills, she convinced her father to see a pain management specialist and enter a confidential drug treatment program managed by Major League Baseball.  

That was in 2011, the year Francona’s marriage and his career as Red Sox manager unraveled at the same time. A team that many predicted would win yet another World Series suffered an historic collapse. Stories surfaced about players drinking beer, eating fried chicken and playing video games in the clubhouse during games. Anonymous sources pinned much of the blame on Francona, who was unceremoniously dumped by the Red Sox at the end of the season.

“Team sources said Francona… appeared distracted during the season by issues related to his troubled marriage and to his health,” reported the Boston Globe. “Team sources also expressed concern that Francona’s performance may have been affected by his use of pain medication.”

Francona felt betrayed by the team and by the insinuation that he was an addict.

“I don’t have a drug problem, that’s pretty obvious. I don’t drink that much, but I joke about it a lot. Anybody that knew me knew that I had taken more painkillers in ’04, because my knees were shot,” he said.

Francona was hired as manager by the Indians in 2012 and has guided them to four consecutive winning seasons. The Indians swept Francona’s old club – the Red Sox – to win the American League’s divisional series this month. They went on to beat the Toronto Blue Jays to win the American League pennant and now face the Chicago Cubs in the World Series.

This is Francona’s 16th year managing in the big leagues. At 57, he doesn’t talk much about his health problems – preferring instead that the attention be focused on his players. In addition to pain medication, Francona reportedly takes blood thinning medication and wears compression sleeves on his legs to improve blood circulation.  

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.