Many Doctors Not Confident Prescribing Opioids

By Pat Anson, Editor

Nearly two-thirds of physicians who prescribe opioids say they are not confident or only somewhat confident about managing patients on opioid painkillers, according to the results of a new survey that found widespread gaps in education about opioid safety.

"This indicates a critical need for provider education addressing this issue. It is important our medical community is given the training it needs to confidently manage chronic pain while significantly reducing prescription opioid misuse, overdose and diversion," said Daniel Alford, MD, of Boston University School of Medicine.

Boston University and Haymarket Medical Education conducted an online survey of nearly 800 physicians who are registered with the Drug Enforcement Administration to prescribe Schedule II and III controlled substances.

Over a quarter (28%) said they had not completed certified medical education (CME) in safe opioid prescribing. Many also said they lacked the time or staff to implement an opioid monitoring system for patients, such as drug testing and pill counts.

"It's troubling that so many physicians say implementing safe opioid prescribing systems is not a priority, even though this is an acute issue. We've created a situation where some physicians are comfortable not doing anything about it,” said Alford.

Only a quarter of the doctors surveyed said they were very confident about their ability to safely manage chronic pain with opioid pain medication. Four out of ten said they don’t even prescribe opioids.

 “Lack of knowledge regarding some narcotics. Concerns of dealing with patients who appear to be drug seeking. Lack of time to follow some of these patients closely,” said one doctor who was not confident about prescribing opioids.

“Lack of training. Fear of providing access to patients who might abuse opioids,” said another.

Pain education for doctors – or the lack of it – is such a concern that the recently released National Pain Strategy considers it a top priority.

“Many health professionals, especially physicians, are not adequately prepared and require greater knowledge and skills to contribute to the cultural transformation in the perception and treatment of people with pain,” a draft version of the report states. “Core competencies in pain care are not fully developed and generally do not inform undergraduate curricula in health professions schools or graduate training programs, even those in pain medicine.”

A 2012 study published in the Journal of Pain  called pain education in the U.S. and Canada “lackluster” and warned that unless steps were taken to improve the training of pain physicians, “the crisis in pain care and resultant deaths from opioid abuse will only spiral upwards.”

The study of 117 U.S. and Canadian medical schools found that less than 4% required a course in pain education and only one in six schools offered a pain elective. A large number of U.S. medical schools do not have any pain courses and many of those that do have less than five hours of classes.

Power of Pain: There is Great Reason for Hope

(Editor’s note: Pain News Network is pleased to welcome Barby Ingle as our newest columnist. Some of you may already know Barby from her work with the Power of Pain Foundation, but you may not know the story behind her activism on behalf of pain sufferers. You can read all about it here.)

By Barby Ingle, Columnist

The good news is I have taken control of my chronic pain diseases. It has been a long tough road -- 18 years of living in the healthcare system have taught me to stand up for myself and learn to be my own best advocate.

It all began when I developed endometriosis in 1997 and worsened when I developed Reflex Sympathetic Dystrophy (RSD) after a minor car accident in 2002. I thought endometriosis was bad until I got it RSD.

Prior to the accident, I was a business owner and head coach at Washington State University for the cheer and dance program. I was living a great life and was successful in managing the endometriosis through medication and surgery. After the accident I had shoulder pain. Even though there were no signs of an injury on x-rays or MRI images, doctors suggested I have shoulder surgery. This surgery did not fix the pain and only made things worse.

Doctors were stumped and sent me a TOS specialist. After more tests the doctor realized I needed surgery again because bone spurs from the first TOS surgery were going into my lung and nerve bundles in my right shoulder.

BARBY INGLE

In 2005, I was finally diagnosed with RSD and learned that TOS was a symptom of RSD. By the time of that diagnosis, I had been treated by 42 other healthcare providers and been told many random strange things, from “It’s all in your head” to “Your boobs are too big. You should get a breast reduction.”

My RSD symptoms were called “bizarre” by one prominent neurovascular surgeon. Some of those symptoms included severe pain, sweating, skin discoloration, sensitivity to touch and light breezes, dizziness, vomiting, syncope, and gastrointestinal issues.

Every procedure was a new trauma that increased my pain and other symptoms.

Learning about RSD

The 43rd provider finally looked at my records in their entirety before coming into the exam room. He was the one to figure out I had RSD and give me some of my first answers. I remember being so excited because I finally had a name for what I was dealing with.                                                     

But once I started to research RSD on the internet, that excitement turned to fear. I took the time to find out who the best providers were and found ways to get to see them. I have now been treated by over 100 providers since 1997.

Having experienced painful injuries many times in my life, I thought all pain was the same. Now, I know there is a difference. I learned that you can have more than one type of pain at the same time (burning, stabbing, cutting, electric, etc.). I feel bad for the people I knew with chronic pain before my experience began. I thought they were constant complainers. I was wrong.

I was humbled as I needed help with ordinary activities of daily living, like dressing, bathing, traveling, cooking, shopping, and walking. What I was going through was traumatic and depressing. The burning pain was never ending.

Living with pain is a big life challenge. It has been hard. Through this challenge I have learned we all have a right to proper care and treatment to ease our pain. Don't stop until you get the help you need.

Remission

As of 2009, I have been in and out of remission. What I found that worked best for me is the use of an oral orthotic (a mouth device that lowers brain stem inflammation), IV infusion therapy, aqua therapy, heat, traction, better posture, improved eating habits, and stretching exercises. There was not a one size fits all cure for me or any of the thousands of patients I have met in my pain journey.

I have come in and out of remission since then. In the beginning I would be so afraid that this time the doctor would not be able to help me. Now I know that if one doctor can’t help there are others that can. Not all providers offer the same knowledge or access to treatments that may be right for me. I have to research for myself to find out what I am comfortable going through.

We all have to learn to be the chief of staff of our medical team. Be empowered patients and live life to the fullest each moment. Don’t feel guilt if you can’t do something right now -- make it a goal to accomplish once you are able.

When you think it can’t get any worse, it can. And when you think is can never get better, it can. Take life moment by moment and know that we all have ups and downs. Never give up and never give in!

My drive to turn pain into power comes from my motivation to find a cure for RSD. No one should have to go through my experience. 

Barby Ingle is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation.

Barby is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found by clicking here and at the Power of Pain Foundation.

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.

Study Links Painkillers to Homicides

By Pat Anson, Editor

You can add the term “homicidal” to the list of stigmas faced by chronic pain patients.

A new study in the journal World Psychiatry has found that certain drugs that affect the central nervous system – particularly opioid painkillers – significantly increase the risk of committing murder.

The Swedish and Finnish researchers behind the study wanted to know if there was any scientific basis for the claim that anti-depressants and other psychotropic drugs can cause violent behavior. It’s an issue that was debated after massacres committed by young people in schools and other public places in Finland and around the world.

"It has been repeatedly claimed that it was the anti-depressants used by the persons who committed these massacres that triggered their violent behavior. It is possible that the massive publicity around the subject has already affected drug prescription practices," said lead author Jari Tiihonen of the Karolinska Institute in Sweden.

In one of the first studies of its kind, researchers analyzed a database of 959 people convicted of homicide in Finland between 2003 and 2011 to see what medications they were taking before their crimes.  

They found that anti-psychotic medication was not associated with a significantly increased risk of homicide, and there was only a slightly elevated risk for most people taking anti-depressants and benzodiazepines – drugs used to treat anxiety and insomnia.

But the study did find, rather surprisingly, that there was a significantly higher risk of committing a homicide associated with opioid pain medications like oxycodone and tramadol (93% higher) and anti-inflammatory pain relievers such as acetaminophen (206% higher).

The risk was even more elevated for young people. For someone under the age of 26, there was a 223% greater chance of them killing someone if they were taking opioids. Young people taking benzodiazepines had a 95% greater risk.

"Benzodiazepines can weaken impulse control, and earlier research has found that painkillers affect emotional processing. Caution in prescribing benzodiazepines and strong painkillers to people with a history of substance abuse is advisable," Tiihonen concluded.

Although alcohol and other intoxicants were also involved in a majority of the homicides, the researchers said their use did not explain the differences between the drug groups.

In 2007, an 18-year old Finnish high school student named Pekka-Eric Auvinen fatally shot eight people at his school before taking his own life. He had been taking anti-depressants for a year prior to the massacre.

The Citizens Commission on Human Rights UK has a list of several other massacres around the world linked to the use of anti-depressants. Opioids are not mentioned in any of the examples.

New Software Helps Doctors See Kids' Pain Levels

By Pat Anson, Editor

Accurately assessing pain levels in a patient is difficult because pain is so subjective. No one really knows how much pain a patient is in – except the patient.

It gets even harder when the patient is a young child who can’t verbally express their feelings the same way an adult can. For decades doctors have relied on low-tech diagnostic tools like the Wong Baker Pain Scale – a series of sad and smiling faces the child chooses from to help the doctor understand how much pain they are in.

Thankfully, that era may be coming to an end with the development of a high-tech approach at the University of California, San Diego School of Medicine.

Researchers there have demonstrated the validity of new software that measures pediatric pain by recognizing facial patterns in each patient. Their study is published online in the journal Pediatrics.

“The current methods by which we analyze pain in kids are suboptimal,” said senior author Jeannie Huang, MD, a professor in the UC San Diego School of Medicine Department of Pediatrics and a gastroenterologist at Rady Children's Hospital-San Diego.

COURTESY UC SAN DIEGO SCHOOL OF MEDICINE

“In this study, we developed and tested a new instrument, which allowed us to automatically assess pain in children in a clinical setting. We believe this technology, which enables continuous pain monitoring, can lead to better and more timely pain management.”

The researchers used the software to analyze pain-related facial expressions from video taken of 50 youths, ages five to 18 years old, who had laparoscopic appendectomies.

Researchers filmed the patients during three different post-surgery visits: within 24 hours of their appendectomy; one calendar day after the first visit and at a follow-up visit two to four weeks after surgery. Facial video recordings and self-reported pain ratings by each patient, along with pain ratings by parents and nurses were collected.

“The software demonstrated good-to-excellent accuracy in assessing pain conditions,” said Huang. “Overall, this technology performed equivalent to parents and better than nurses. It also showed strong correlations with patient self-reported pain ratings.”

Huang says the software also did not demonstrate bias in pain assessment by ethnicity, race, gender, or age – an important consideration given how subjective current pain scales can be.

Because the software operates in real-time, doctors can be alerted to pain when it occurs instead of during scheduled assessments. The technology could also advocate for children when their parents are not around to notify medical staff about their child's pain level.

Huang said the software needs further study with more children and other types of pain in a clinical setting.

“It still needs to be determined whether such a tool can be easily integrated into clinical workflow and thus add benefit to current clinical pain assessment methods and ultimately treatment paradigms,” she said.

Huang says controlling pain is important, not only for the child's comfort, but also for their recovery since studies have shown that under-treatment of pain is associated with poor surgical outcomes.

Can Oxygen Therapy Treat Fibromyalgia?

By Pat Anson, Editor

Hyperbaric oxygen therapy – also known as HBOT – has been used for decades to treat infections, severe burns, carbon monoxide poisoning, even scuba divers recovering from decompression sickness.

Patients undergoing HBOT are put in a pressurized room or tube. The higher air pressure allows lungs to gather more oxygen than they would normally – helping the body to heal faster.

Promising new research out of Israel suggests that HBOT can also be used to treat fibromyalgia patients by causing neuroplasticity – a “re-wiring” of the brain that can change neural activity in areas overly sensitized by chronic pain. The study has been published in the journal PLoS ONE.

“This study provides evidence that HBOT can improve quality of life and well-being of many FMS (fibromyalgia) patients. It shows for the first time that HBOT can induce neuroplasticity and significantly rectify brain activity in pain related areas of FMS patients,” wrote lead author Shai Afrati, MD, of the Institute of Hyperbaric Medicine, Assaf Harofeh Medical Center.

file photo of a woman getting hyperbaric oxygen therapy

Fibromyalgia is a poorly understood disorder that is characterized by deep tissue pain, headaches, fatigue, depression and insomnia. The cause is unknown and there is no cure.

Afrati, who has also studied oxygen therapy on stroke and concussion victims, enrolled 60 female fibromyalgia patients in his latest study. For five days each week they were given 90 minutes of HBOT with oxygen enriched air.

“It is plausible that increasing oxygen concentration by HBOT can change the brain metabolism and glial function to rectify the FMS-associated brain abnormal activity. It has already been demonstrated that exposure to hyperbaric oxygen induces significant anti-inflammatory effect in different conditions and pathologies,” said Afrati.

After two months, brain imaging showed the women had significant changes in neural activity, and they reported less pain and fewer tender points. Several said that they had either reduced or stopped taking pain medication.

However, not everyone could handle being placed in a pressurized air chamber. Five women dropped out of the study, complaining of dizziness, claustrophobia and an inability to adjust to the air pressure.

But Afrati is encouraged by the results.  

“Follow-up studies are needed in order to investigate the durability of the HBOT effects on FMS. It might be that some patients will need more HBOT sessions,” he wrote. “Since there is currently no solution for FMS patients, and since HBOT is obviously leading to significant improvement, it seems reasonable to let FMS patients benefit from HBOT, if possible, now rather than wait until future studies are completed.”

Vegan Diet Reduces Neuropathy Pain

By Pat Anson, Editor

A vegetarian diet coupled with a daily vitamin B12 supplement significantly reduced pain and improved the quality of life of people with diabetic neuropathy, according to the findings of a small study published in Nutrition & Diabetes. Participants also lost an average of 14 pounds.

Nearly 26 million people in the United States have diabetes and about half have some form of neuropathy, according to the American Diabetes Association.  Diabetic peripheral neuropathy causes nerves to send out abnormal signals. Patients feel burning, tingling or prickling sensations in their toes, feet, legs, hands and arms.

Many drugs used to treat neuropathic pain, such as Neurontin and Lyrica, often don’t work or have unpleasant side effects.

Researchers at California State University, East Bay, and the George Washington University School of Medicine put 17 adults on a low-fat vegan diet that focused on vegetables, fruits, grains and legumes. Typical meals included oatmeal with raisins, pasta with marinara sauce, vegetable stir-fry with rice, and lentil stew.

Participants also took a daily vitamin B12 supplement, as did a control group that did not alter its diet.

After 20 weeks, patients on the vegan diet not only had less neuropathic pain, they had lower blood pressure and cholesterol levels and had lost weight.

"A dietary intervention reduces the pain associated with diabetic neuropathy, apparently by improving insulin resistance" said Neal Barnard, MD, president of the Physicians Committee for Responsible Medicine at CSU East Bay.

Researchers also noted there was significant improvement in pain and other symptoms in the control group.  The magnitude of the improvement suggests that the B12 supplement, intended to serve as a placebo, may have had real effects in both groups.

One in three children born in the U.S. in 2000 will develop diabetes at some point in his or her life. The average lifetime cost to treat type 2 diabetes is $85,200, half of which is spent on diabetes complications.

"The dietary intervention is easy to prescribe and easy to follow," says Cameron Wells, a registered dietician and acting director of nutrition education for the Physicians Committee. "Steel-cut oats, leafy greens, and lentils are widely available at most food markets and fit well into most budgets."

Fibromyalgia Blood Test Gets Insurance Coverage

By Pat Anson, Editor

The founder of a bioresearch company that offers a controversial blood test for fibromyalgia says the test is now covered by Medicare and some private insurers. But questions remain about the viability of the test.  

“Insurance has really been the big issue for us. That was the hump we really needed to get over,” said Bruce Gillis, MD, the founder and CEO of EpicGenetics in Santa Monica, CA.

“We are a Medicare approved laboratory. It covers 100% of the test. We are getting private insurance companies that are reimbursing for the test. And we have gotten most Blue Cross Blue Shield agencies to pay for the test.”

“We are a Medicare approved laboratory. It covers 100% of the test. We are getting private insurance companies that are reimbursing for the test. And we have gotten most Blue Cross Blue Shield agencies to pay for the test.”

EpicGenetics introduced the FM/a test in 2013, calling it the first definitive blood test for fibromyalgia, a poorly understood disorder that is characterized by deep tissue pain, fatigue, depression and insomnia. The test costs $775 and results are usually available in about a week.

Gillis told Pain News Network that with insurance coverage now available he expects more people to take the test. He projects his lab to analyze its 5,000th FM/a test by the end of the year.

IMAGE COURTESY OF EPICGENETICS

The test looks for protein molecules in the blood called chemokines and cytokines, which are produced by white blood cells. Fibromyalgia patients have fewer chemokines and cytokines in their blood than healthy people, according to Gillis, and have weaker immune systems as a result.

But critics have contended that the same immune system biomarkers can be found in people with other illnesses, such as rheumatoid arthritis, making the FM/a test meaningless.

Two small studies supporting Gillis’ theory have been conducted, both of them financed by EpicGenetics. The most recent study, published in Rheumatology International, compared the blood profiles of 160 patients who had taken the FM/a test to blood from hundreds of lupus and rheumatoid arthritis patients, as well as a control group.

“We were able to demonstrate statistically significant differences in scores comparing patients with FM (fibromyalgia), healthy controls and autoimmune disease,” wrote lead author Daniel Wallace, MD, a rheumatologist at the Cedars-Sinai Medical Center in Los Angeles and a professor at the David Geffen School of Medicine at UCLA who has worked as a consultant for EpicGenetics.

“This cytokine profile test had a 93% sensitivity and an 89.4% specificity for the diagnosis of FM. We also found that these profiles are relatively sensitive and specific for FM compared to SLE (lupus) and RA (rheumatoid arthritis). It remains unclear if these differences are directly related to the pathogenesis of FM.”

Wallace called his research “exploratory” and said further studies are needed to see if other autoimmune diseases can lower levels of chemokines and cytokines in the blood.

But Gillis goes further – saying the study “proved” that the FM/a test works.

“This study analyzed patients with fibromyalgia against patients with rheumatoid arthritis and lupus, the two primary illnesses in rheumatology. And it proved that our biomarkers are indeed distinct for fibromyalgia,” said Gillis.

"Junk Science"

But critics say more proof is needed – not only that the FM/a test works – but that fibromyalgia is a separate and distinct disease.

“The study is interesting but interpretation of their results is still made somewhat difficult by the fact that, as far as we know, fibromyalgia is not a discrete medical condition,” said John Quintner, MD, a rheumatologist in Australia. 

Quintner calls fibromyalgia a “symptom cluster” and says lower levels of chemokines and cytokines could be caused by a number of different disorders that trigger an immune system response. 

“Such conditions might also include major depressive disorder and post-traumatic stress disorder,” Quintner wrote in an email to Pain News Network.

An even bigger skeptic is Fred Wolfe, MD, a prominent researcher and rheumatologist who has called the EpicGenetic studies “junk science.” 

“The (new) study is very, very bad, and does not meet minimal scientific standards. The test is not needed and could not possibly be valid,” said Wolfe, who also considers fibromyalgia more of a symptom than a disease.   

“What you need to do in a study like this is you need to have an unbiased population. And this is by no means an unbiased population. They picked the people. If you’re measuring stress, it’s very easy to pick the patients you want and get the results you want,” Wolfe told Pain News Network.

“Fibromyalgia is an illness that can be found in people with rheumatoid arthritis and lupus. It occurs in about 25% of people with rheumatoid arthritis. It’s sort of like separating anxiety from cancer. A lot of people with cancer have anxiety. And the idea that you could have a test that separates anxiety from cancer is absurd because these conditions can occur together and frequently do.”

Pfizer Funding

Gillis says Wolfe’s views about fibromyalgia may have been influenced by funding he received from Pfizer, a pharmaceutical company that makes Lyrica – an anti-seizure drug that was re-purposed by Pfizer to treat fibromyalgia. Lyrica is Pfizer’s top selling drug with annual worldwide sales of over $5 billion.

According to ProPublica, Wolfe received $200,000 in funding from Pfizer from 2010 to 2013 for research and consulting.

“Our test says that fibromyalgia is an immunologic disorder,” said Gillis. “Why would you take an anti-seizure medicine for an immunologic disorder? Lyrica’s primary indication is for anti-seizure therapy.”

Wolfe says the funding he received from Pfizer was for a rheumatoid arthritis study, not fibromyalgia. As for Lyrica, Wolfe says he doesn’t consider the drug a good treatment for fibromyalgia.  

“I think what Pfizer has done has been very harmful, and I have stated and written this publicly. I was barred from speaking at a meeting some years ago by Pfizer and have continuously refused to cooperate with them,” he said.

Fatigue Often Stops RA Patients from Working

By Pat Anson, Editor

Fatigue and pain are the top reasons rheumatoid arthritis (RA) patients in the U.S. stop working, according to a new survey that found only about a third of RA patients are still employed full-time.

The “RA in America” survey of over 3,500 patients was conducted online by Health Union, a healthcare research and marketing company. It found that RA had a severe impact on patients’ quality of life, employment, and ability to afford treatment.

RA is a chronic and disabling autoimmune disease that causes pain and stiffness in joints. It affects about 1.3 million Americans and about one percent of the global population.

Ninety-four percent of respondents said they cannot do as much as they were able before acquiring the disease. Only 37% said they were still working full time.

Although fatigue is often overlooked as a symptom of RA, it had the greatest impact on the respondents’ ability to work – with 92% reporting they were tired while on the job. Pain, physical limitations, and a lack of understanding by colleagues also presented challenges.

“My biggest complaint is fatigue,” wrote one poster on a Health Union Facebook page.  “I am an invalid due to RA. I am in bed 24/7, I can't even sit up. I sleep a lot, not much else to do, but no matter how much I sleep, when I wake I'm exhausted. It's so crazy. I can sleep for 20 hours, and I'm exhausted the minute I open my eyes.”

“I was forced from my job because of exhaustion,” wrote another woman. “The meds contributed to the sleepiness, so I am careful about which I take. (I have) developed Lupus, OA and several related syndrome in addition to the RA.”

Many people who were surveyed said they were diagnosed with other conditions, including depression and anxiety (39%), high blood pressure (33%), fibromyalgia (32%) and migraine (25%).

Survey respondents also reported they needed help with daily activities, such as cleaning (75%) and other household chores (52%). Over a third (41%) needed assistance from a caregiver, which was typically a spouse, to help manage their RA.

"Many people do not know rheumatoid arthritis is a progressive, autoimmune disease and not the result of aging and wear on the body, like osteoarthritis the most common form of arthritis," said Andrew Lumpe, PhD, an RA patient. "Treatment can help slow the damage, but rheumatoid arthritis frequently alters the lives of both patients and their families."

The survey found some good news to report. Over a third (34%) of respondents said their RA had gone into remission at some point, usually for less than a year. Nearly three-fourths (74%) said the remission occurred after they began taking medication.

About half the survey respondents reported satisfaction with their treatments and only 21% were dissatisfied. Those on biologics, a newer and more expensive medication that can cost over $20,000 a year, had a slightly higher satisfaction rate. Over a third of respondents (38%) have avoided medications because of cost.

"The affordability of effective rheumatoid arthritis treatments is a serious concern," said Mariah Leach, an RA patient. "When you consider the burden this disease places on patients in terms of quality of life and employment, it is clear that supporting these individuals with treatment options can yield many benefits."

The Importance of Awareness

By Jennifer Martin, Columnist

The other day I was made aware of a malicious Facebook post that was written about an acquaintance who was making others aware that it was World IBD Day.  She was simply educating others about inflammatory bowel disease and the difficulties that arise from having such a condition. 

The Facebook poster declared how tired he was of people posting about their diseases and trying to gain pity from others. 

The day before, another poster with a J-pouch due to ulcerative colitis mentioned that while she was leaving the bathroom a woman told her that she should use a private bathroom because what she was doing was disgusting. 

Not long before this, a chronic pain patient of mine told me she received a dirty look from someone in a grocery store parking lot because she parked in a handicap parking space, even though her handicap placard was hanging clearly from her rear-view mirror.

The same day, another patient told me that he doesn’t feel like his doctor hears him when he tells him how much pain he is in.

Unfortunately, this kind of misunderstanding and ignorance happens all of the time. People with invisible chronic pain or chronic illnesses are often the recipients of hurtful words or spiteful looks from people with have no clue what they are going through on the inside.

This is why awareness is so important. About half of all American adults -- 117 million people --have one or more chronic health conditions, yet many of us are still largely misunderstood.  We may be feeling awful, but typically we look fine from the outside. 

Many people think chronic pain patients are addicts who just want drugs.  Some who don’t understand Complex Regional Pain Syndrome (CRPS/RSD) think it’s a psychological problem.  And others believe that fibromyalgia isn’t real and that patients only want sympathy.

It is important for people to have a better understanding of what we’re going through so that the stigmas, hurtful words, and malevolent looks begin to fade.  That cannot happen if we remain silent.

May is a big awareness month for chronic pain and chronic illness:

Fibromyalgia and Chronic Pain Awareness Day was May 12.

World IBD day was May 19.

World MS day is May 27.

May is also Arthritis Awareness month.

So keep wearing those awareness t-shirts -- and keep blogging, educating, and posting.  Will it help?  I am hopeful.

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 Digestive Diseases, as well as other types of chronic pain.

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.

Tramadol ER Visits Soar as Prescriptions Rise

By Pat Anson, Editor

Emergency room visits in the U.S. involving tramadol have nearly tripled in the last decade, coinciding with a sharp increase in the number of prescriptions for the opioid pain reliever.

According to a report by the Substance Abuse and Mental Health Services Administration (SAMHSA), emergency room visits involving adverse reactions to tramadol rose from 10,901 visits in 2005 to 27,421 visits in 2011. A second SAMHSA report  found a similar increase in the number of ER visits related to the abuse or misuse of tramadol. The vast majority of patients were treated and released.

Ironically, tramadol is considered less risky than other opioid painkillers and doctors have been increasingly prescribing it. The IMS Institute recently reported the number of tramadol prescriptions in the U.S. nearly doubled from 28 million in 2010 to over 44.2 million in 2014.

Tramadol is the active ingredient in brand name pain relievers such as Ultram, Ultracet, Ryzolt and Rybix.

“Tramadol is not abused as much as most pain medication, but it is often overtaken in an effort to obtain additional pain relief.  Like with all pain medication, excessive amounts can cause serious harm,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine and vice president of scientific affairs at PRA Health Sciences.

Webster predicted that tramadol would be prescribed even more often when hydrocodone was reclassified in 2014 by the Drug Enforcement Administration from a Schedule III drug to a more restrictive Schedule II medication. Tramadol is a Schedule IV drug, meaning it has less potential for abuse than other narcotic pain relievers.

“In the past several years there has been tremendous pressure to reduce prescribing strong opioids. Tramadol has been used in place of other opioids. But it is not without risks as well,” said Webster in an email to Pain News Network.

“The rise in problems associated with tramadol underscores the larger problem of an unmet need to effectively treat pain. Most people, including policymakers, don't realize how many people are desperate to have their pain treated.”

About two-thirds of the ER visits related to misuse or abuse involved tramadol that was taken with other opioid pain relievers or anti-anxiety drugs (benzodiazepines). When tramadol is combined with other drugs that depress the central nervous system its sedative effects can be enhanced, causing seizures and a potentially fatal drug reaction known as serotonin syndrome.

Women were far more likely to have a tramadol-related trip to the ER than men, according to SAMHSA.

The greatest increase in tramadol-related misuse or abuse occurred in patients aged 55 and older. A SAMHSA spokesman said the higher number of older adults was not surprising because seniors are more likely to combine tramadol with other medication.

"Tramadol and other pain relievers can help to alleviate pain, but they must be used carefully and in close consultation with a physician," said SAMHSA Chief Medical Officer Elinore McCance-Katz, MD. "Like all medications tramadol can cause adverse reactions, which can be even more severe if the drug is misused. We must all work to lower the risks of taking prescription drugs.”

Readers Sound Off on Urine Drug Tests

By Pat Anson, Editor

Our recent series of stories on urine drugs screens – and how they are often unreliable or misinterpreted by doctors – struck a note with several readers who said they were falsely accused of abusing or misusing drugs.

Timmi Jernigan is a 54-year old retired educator in South Carolina who says she was “fired” last month by her doctor after a single drug test. Timmi has a prescription for Adderall – a drug used to treat attention deficit disorder – but the amount detected in her system was low.

A week after the test, she received a registered letter from the doctor discharging her.

"On 4/23/15 a drug test was performed which shows you are not taking the controlled substance prescribed. This in in violation of your drug agreement and we will no longer continue your care. We will see you for an emergency only for the next thirty days. During this time we will not prescribe any controlled substances. If you feel you need drug rehabilitation please contact our office for a referral,” the letter said.

 “Just like that. No follow-up appointment to discuss this test. I called and they would not let me see the doctor,” Timmi wrote to Pain News Network.

Timmi wanted to remind the doctor that a month earlier they had agreed to lower the amount of Adderall she was taking because it might worsen her high blood pressure.

“To suggest (per the letter) that I need drug rehabilitation because there is not enough amphetamine in my system is ludicrous at best,” she wrote.

Now Timmi is worried that the discharge letter in her medical files will damage her reputation and prevent her from finding another doctor.  Adding insult to injury, she received a bill for $1,300 from Ameritox, the drug screening company that performed the test – which is not covered by her insurance.

"I was not made aware of the huge cost involved in this ‘not medically necessary’ test. I was not even given a choice,” Timmi said.

"Anytime you are tested to this degree, you are convicted before being charged,” wrote Kim Miller, advocacy director of the Kentuckiana Fibromyalgia Support Group. “If you are the patient testing with a false positive for marijuana or a drug you are not prescribed, it can mean your last prescription of pain medication for a crime you didn't commit! Yes, I said ‘crime’ because that's the way chronic pain patients are treated anymore.”

False Negatives

Sometimes it’s not a false positive that gets a patient in trouble, but a false negative that indicates they may not be taking a prescribed medication – a red flag that could indicate the drug is being diverted.

That’s what happened to another woman – we’ll call her “Kathryn” -- who prefers to remain anonymous. Kathryn was accused of not taking klonopin, a prescribed medication for anxiety, after it didn’t show up in her drug screen.

“I was taking it as prescribed but no one listened. I was treated horribly,” Kathryn wrote. “After a lot of calls, the support of my husband, primary care doctor, insistence with staff (who made me feel like a criminal) and a revisit with doctor, Doc agreed med was at low enough level it wouldn't necessarily show up.”

“It's a shame though that patients have to pay literally and figuratively for the urine tests and revisits,” said Kathryn, who suffers from back pain, osteoarthritis, fibromyalgia and carpal tunnel syndrome.

Some readers did their own detective work to find out why they tested positive for a drug they weren’t taking. One shared with us a website called AskDocWeb that keeps a list of hundreds of medications, over-the-counter drugs, foods and even household products that can trigger a false positive. Poppy seeds in a muffin, for example, can trigger a false positive for opiates. And the pain reliever ibuprofen could get you flagged for marijuana.

“All this, and there is no scientific evidence to support that urine drug screens are curbing addiction. Would our money be better spent on programs to help those with addiction, which would not interfere with people who use their medications responsibly? Is a middle man once again driving up the costs of healthcare?” asked Celeste Cooper, a retired nurse and fibromyalgia advocate.

For more information about the $4 billion dollar a year drug screening industry, the Milwaukee Journal Sentinel has a story about the "Hidden Errors" found at drug testing laboratories.

New Arthritis Treatment Could Slow Joint Damage

By Pat Anson, Editor

Researchers in California are working on a novel method for the treatment of rheumatoid arthritis that could open the door to a new class of medications that prevent joint damage.

Rheumatoid arthritis (RA) is a chronic autoimmune disease in which the body’s own defenses attack joint tissues, causing pain, inflammation and bone erosion. Most RA treatments focus on suppressing the immune system to reduce inflammation and slow progression of the disease.

"Unfortunately, for around 40 percent of patients, immune-targeted therapies are not sufficient to bring them into full remission," said Nunzio Bottini, MD, an associate professor at the La Jolla Institute for Allergy and Immunology and associate professor of Medicine at the University of California, San Diego.

"If we could add a drug that acts on a different target without increasing immune suppression it could be very valuable."

Bottini and his colleagues are focusing on specialized cells called fibroblast-like synoviocytes (FLS) that line the inside of joints, providing lubrication and repairing joint injuries. In RA patients, the cells invade surrounding cartilage and secrete enzymes that break down the rubbery tissue that cushions the bone. They also trigger bone destruction.

"Even if your inflammation is completely under control with the help of current therapies -- and they are excellent -- the damage to the skeletal structure is not necessarily arrested in the long term because synoviocytes continue to cause damage," explains Bottini. "And although synoviocytes are considered the main effectors of cartilage damage in rheumatoid arthritis there's no therapy directed against them."

FLS cells rely on phosphates to transmit signals. When researchers screened tissue samples from rheumatoid arthritis patients for the expression of phosphatases, they discovered that an enzyme called RPTPσ -- short for receptor protein tyrosine phosphatase sigma -- is highly expressed on the surface of their FLS cells. RPTPσ weakens the ability of synoviocytes to aggressively invade the joint's cartilage.

"RPTPσ acts like an inhibitory signal that is pre-coded on the surface of these cells," says postdoctoral researcher Karen Doody, PhD, first author of the study published in Science Translational Medicine.

“Being able to activate RPTPσ's activity gives us a specific tool with which to adjust the migration and aggressiveness of synoviocytes in rheumatoid arthritis," said Doody, who hopes to develop drugs that make the cells less invasive and lose their ability to attach to cartilage.

"The ultimate goal is to use biologics that target synoviocytes in combination with treatments that suppress the immune system, such as methotrexate or anti-TNF, to address all three aspects of rheumatoid arthritis: swollen joints as a result of inflammation, cartilage damage and bone damage."

About 1.5 million Americans and 1% of adults worldwide suffer from RA.

'Robust Response' to National Pain Strategy

By Pat Anson, Editor

Public reaction to the National Pain Strategy has been “very robust” according to the co-chair of the government committee that released a draft version of the report in early April.

Today marks the deadline for public comments on the 72-page report, a long awaited study that calls chronic pain a threat to public health, and identifies several areas where physicians and the healthcare system are failing pain sufferers.

“I think it’s safe to say that there was a very robust response,” said Linda Porter, PhD, co-chair of the National Institutes of Health’s Interagency Pain Research Coordinating Committee (IPRCC).

“I feel  like we really got the word out widely and the comments are coming in from a very broad range of the community, ranging from the professional societies, individual patients, coalitions of patients that have come together, and patient advocacy. So yes, I’m comfortable with it. We’ve gotten a good range of comments from a really broad set of folks.”

Some pain patients and advocates have complained that the IPRCC was dominated by academic researchers, physicians and government bureaucrats – and not enough input was sought from pain sufferers during the drafting of the National Pain Strategy (NPS).

“The NPS is essentially an underpowered, unrealistic, and undemocratic occupational strategy of some pain experts and professionalized lay experts, who were chosen because of their ideology and rank in certain organizations and government,” wrote patient advocate David Becker in his public comment on the NPS.

“There is no evidence that a survey or needs assessment of what Americans want from pain care was done or considered by the NPS and the NPS fails to make a case for their ‘evidence based, high quality, interdisciplinary, integrated multimodal biopsychosocial model’ as being what people in pain actually want out of pain care -- and especially those Americans in pain who will be forced to live with a plan they had no say in developing.”

Porter said she could not release the number of comments that have come in during the public comment period, but she was satisfied patients had a voice in drafting the National Pain Strategy.

“We felt very strongly that their voice had to be heard,” Porter told Pain News Network. “We had patients and patient advocates on every single one of the work groups, on the oversight panel, and on the IPRCC. There was actually a large group of patient advocates and we made sure that each of the working groups had at least a voice on it and some of them had several.”

A list of members on the IPRCC’s oversight committee can be found here. Two of the panel’s 14 members are pain sufferers and/or patient advocates. The rest are longtime experts in the field of pain management, including several who helped write the 2011 Institute of Medicine report, “Relieving Pain in America,” which estimated that 100 million Americans suffer from chronic pain.

Implementing the Plan

One member of the oversight committee said he found it “really exciting in terms of changing the culture of pain,” but admitted there were “minor things” about the NPS that bothered him.

“There is nothing in it about pediatric pain. There’s not as much emphasis on research as we would always like, particularly basic science is left out of it,” said Greg Terman, MD, an anesthesiologist and professor at the University of Washington who is president of the American Pain Society.

“The general problem that I had as a member of the oversight committee is how are we going to implement any of the recommendations? And the answer is I don’t think anyone knows yet, it’s not even final. But I am optimistic.”

The NPS calls for significant improvement in pain management practices, including better education in pain care for physicians, more collaboration between primary care physicians and pain specialists, broader insurance coverage of pain treatments, and more research. But nowhere in the report is the cost for any of the recommendations even discussed.

“That was not our responsibility nor did we have the ability to estimate what these would cost,” says Linda Porter. “It was really out of our scope and we were not asked to do that. It will certainly come up in the planning stage.”

Porter said cost estimates will be handled by the federal Department of Health and Human Services, which is still in the “discussion and planning stage” of deciding which recommendations to implement first. She expects a plan to be announced in late summer or early fall of this year.

“Things move slowly in government I hear,” says Terman. “It’s there, at least in writing, what needs to be done from our expert opinion. Having it gathered all in one area has never been done before and maybe if we can’t make it happen in the next year, maybe in a few more years. If it’s still sitting there waiting to be implemented, sadly there will still be patients waiting to be helped.”

Half of Americans Say Painkiller Abuse 'Serious Problem'

By Pat Anson, Editor

Over half of all Americans believe the abuse of a prescription painkillers is an extremely or very serious problem, according to a new poll by the Boston Globe and Harvard School of Public Health that documents the widespread concern – and misconceptions – the public has about opioid pain medication.

While nearly half (45%) believe painkillers are prescribed too often or in doses that are bigger than necessary, a majority (51%) believe that current regulations on the prescribing and availability of opioid pain medication are about right.  

Less than a third (29%) believe that regulations make prescription painkillers too easy for people to get.

The telephone poll of over 1,000 adults, which was conducted in mid-April, found that most Americans were more concerned about prescription painkiller abuse than they were about heroin.

Nearly one in four (39%) said they knew someone who had abused pain medication.

"For much of the public, the issue of prescription painkiller abuse is not just a remote concern; it's a problem they see in their personal lives," said Robert J. Blendon, a professor of Health Policy and Political Analysis at Harvard T.H. Chan School of Public Health.

People who know someone who has abused prescription painkillers hold different views about the problem than those who do not. They are significantly more likely to think painkiller abuse is an extremely or very serious problem (64% vs. 43%) and that the problem has gotten worse over the past five years (56% vs. 28%).

Of those who have known someone who has had an abuse problem, a majority say it has had a major harmful effect on the user's family life (67%), work life (58%), and health (55%). In addition, 21% say that the person's abuse of prescription painkillers led to their death.

Although studies have found that only a small percentage of pain patients become addicted to opioids, many Americans believe it is easy to get hooked on them. Nearly half of those surveyed (44%) say it is “very likely” that a person taking prescription painkillers will become addicted.

About one in five (21%) of the survey respondents said they had taken a prescription painkiller in the past two years. Of those, one in four (26%) reported they had been very or somewhat concerned that they could become addicted. Nearly two-thirds (61%) said they had talked to their doctor about the risk of addiction.

You can view the complete poll findings here.

While many respondents (39%) believe prescription painkiller abuse has gotten worse over the last five years, there are signs it has been abating.

Hydrocodone prescriptions fell by 8% last year and it is no longer the most widely prescribed medication in the U.S.

A recent report by a large national health insurer found that total opioid dispensing declined by 19% from 2010 to 2012 and the overdose rate dropped by 20 percent.

A Pained Life: Where Can I Get Help?

By Carol Levy, Columnist

Pain News Network recently featured a story about a California woman with chronic pain who is in such dire financial straits that she resorted to asking for help through the crowdfunding site GoFundMe.

After reading the article I realized how many of us are in the same or a similar situation.  I often read and hear the laments:

"There is no one I can go to for help."

"I am alone in this and have nowhere to turn."

"Where do I go for help?"

I have been there myself.

But there are help resources out there once you know where to turn. Here are some of them:

Meals on Wheels provides meals, companionship and safety checks to seniors and others with mobility issues.

Dental Lifeline Network  provides donated dental services. They will connect you with a dentist who will make up a treatment plan for you and complete all the work he feels you need.  The downside is you can only use this service once. 

1-800-Charity Cars provides donated vehicles for free to a wide array of individuals. Their list of those they help include the "medically needy."

The National Association of Free & Charitable Clinics provides a range of medical, dental, pharmacy, vision and behavioral health services to economically disadvantaged Americans. Their website can help you find a free or charitable clinic near you.

Social Security’s Ticket to Work program provides work opportunities to people on disability.

This Google search page has information on dozens of programs that offer free lifeline cell phones. 

PsychCentral has a list of hotlines available 24 hours a day that can help you with whatever assistance you need from substance abuse to domestic violence issues.

Suicide Prevention Lifeline links crisis centers across the United States into one national chat network that provides emotional support, crisis intervention, and suicide prevention services.

Suicide.org has a listing of suicide hotlines by state.

The Samaritans is a hotline that offers emotional support to people dealing with every kind of problem, including illness, trauma and loss.

The National Health Information Center has an extensive list of toll free hotlines for health information.

In addition, you can call your state capitol or local township to find out about local social services, which may include counseling, food, setting you up with an aide, and other in-house help.

Often a local senior center will provide services.  At mine there are professionals who come in every so often to offer free assistance, such as a lawyer who deals with legal issues, accountants who help with taxes, and insurance agents who can help sort out what is the best plan for you. They may also have members who are willing to provide transportation at low or no cost, or other services like cleaning and making meals.

Also, if you live near a major university, often their professional schools (legal, dental, business, etc.) will offer reduced cost services where faculty will double check the work they do for you.

Our lives are hard enough as it is.  These various numbers, services and people can help to make them a little easier.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.