Drug Tests Scare Off Some Chronic Pain Patients

By Pat Anson, Editor

Urine drug testing has become standard protocol for many patients who are prescribed opioid pain medication. But a new study suggests the practice may be counterproductive, because it increases the odds a patient won’t come back for further treatment.

In a study involving 723 chronic pain patients being treated at a pain clinic, researchers at the University of Houston and the University of Texas Medical Branch at Galveston found that nearly a quarter (23.75%) who were given a urine drug screen on their first visit failed to show up for the next appointment. 

The odds were even higher for those who tested positive for an illicit drug, but the “no show” trend also applied to patients whose drug tests were negative.

“Even those who tested negative for illicit substances in the UDS (urine drug screen) were more likely to be no-shows compared to those who did not get tested. This raises concerns that the UDS administered early in the doctor-patient relationship might have an inadvertent impact on injuring patient expectations of trust,” the researchers reported in the journal Pain Physician.

Only about 10% of those who weren’t tested skipped their follow-up appointment.

“It is a balancing act,” said Partha Krishnamurthy, director of the Institute for Health Care Marketing at the University of Houston’s Bauer College of Business. “On one hand, concerns about patient safety and public health necessitate the monitoring of patients on opioid medications. On the other hand, aggressive monitoring may interfere with the therapeutic alliance.”

Routine use of urine drug tests is one of the main recommendations in the CDC’s draft guidance for opioid prescribing, which calls for primary care physicians to “use urine drug testing before starting opioid therapy and consider urine drug testing at least annually.”

The scientific research behind that recommendation is considered weak, as is much of the evidence that standard “point of care” urine drug tests are reliable or accurate.

“I've only been saying that UDT (urine drug tests) harms patients and the patient/provider relationship for the past seven years and not a single physician, researcher, or healthcare provider of any kind supported my position.  I guess common sense wasn't enough but now we have evidence,” said Mark Collen, an independent scholar and patient advocate. 

“As I've stated previously in regards to UDT, the entire pain community will end up on the wrong side of history and it looks like that's beginning to occur.”     

Researchers say one possible solution to the high-rate of patient “no shows” is for doctors to delay drug screening of new patients until they’ve had a chance to develop rapport and trust with them.

“Not testing is not an option,” the researchers said, while at the same time warning that routine testing may only make prescription drug abuse worse.

“If the patients are disengaging from the clinic, where are they going? Is the illicit market place their next stop? Thus, while UDS may induce the problematic patients to go away from the clinic, the problem of opioid misuse may continue to persist.”

A Pained Life: Does Child Abuse Cause Chronic Pain?

By Carol Levy, Columnist

The idea of childhood trauma or abuse leading to chronic pain in adulthood has always bothered me.

The idea that trauma/abuse can change the neural system sounds intriguing, but has yet to be proven. The studies I have seen do not prove a connection, only a link.

I was abused as a child.  I have almost no memory of my childhood, but I fit the profile. Two siblings also circumstantially validated it.

My trigeminal neuralgia is a symptom of a neurovascular birth defect that I was unaware of until the pain was diagnosed. My pain started as typical trigeminal neuralgia; out of the blue a horrendous, excruciating, world bending pain. It lasted only a few seconds then disappeared.

I have a birthmark in the exact area of the pain which anatomically corresponds to the pained area and trigeminal nerve distribution in the face. It's presence, as well as the fact that it is 'vascularized' (can change color), is a sign of the birth defect.

Growing up my sister would sometimes say, “You're upset.” I’d deny it and she'd smile knowingly, “Yes you are. Your birthmark's out.”

I am lucky in that this birth defect often comes with other terrible consequences; paralysis, blindness, intellectual deficit, and psychiatric disorders. That may be the only time the words “luck” and “trigeminal neuralgia” have gone hand in hand. I could have had some or all of those awful things. Instead it was only trigeminal neuralgia.

My signs and symptoms of abuse are many, among them that I do not like to be touched unexpectedly. I often flinch when it happens. Trigeminal neuralgia can be triggered when something touches the pained area, even something as benign as the slight wisp of a strand of hair.

Circumstantially, one could put those two together; I don't like to be touched and I developed disorder that makes touch horrendously painful.

The negative to that is twofold. I did not know I had the defect, and trigeminal neuralgia in my case has very specific neurosurgical attributes. Although the cause has been theorized, no one is completely sure of what causes trigeminal neuralgiait. In my case though, there is no doubt: dozens and dozens of tiny vessels throughout the affected side of my brain.

I moved to New York City six months before the pain started. I shared a two- room apartment with someone I knew slightly. We never developed chemistry and one day I came home to find a note on the table saying, “I'm going back to Washington.”

I now had the unexpected responsibility of full rent, which I could barely afford. To top it off, I had just been fired. I hated my job but was not aware my employer also knew it until 3 days before Christmas, when he said, without preamble, “You're fired.”

Not surprisingly, I became very depressed. Now, did the depression change my neurochemistry so that the birth defect suddenly became active? I can see that as a possibility. Is there a way to prove it? None of which I am aware.

I think it is too easy to make a connection between two disconnected things, like chronic pain and childhood trauma/abuse, and turn it into an explanation.

Many articles and studies conclude that there is a high prevalence of childhood abuse among those with chronic pain. Often the studies rely on self-reporting, so there is also a question of reliability and constancy as to what constitutes abuse. Too often the authors go on to postulate that there is a connection.

But the presence of one does not mean it causes the other.

Without true studies, such as MRI imaging or other forms of measurement, to compare and contrast the brains of those with chronic pain and childhood abuse histories to those who have chronic pain but suffered no abuse -- we are left with a theory in search of a proof.

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.

Pain Companion: Breathing Exercises for Chronic Pain

By Sarah Anne Shockley, Guest Columnist

Can your breathing patterns actually affect your pain levels?

Over several years, and born from the desperation of having no effective pain remedies, I discovered some simple breath exercises which helped decrease my acute pain levels and increase my overall well being.

In the fall of 2007, I contracted a particularly severe case of Thoracic Outlet Syndrome (TOS). Briefly stated, the area between my collarbones and first ribs collapsed, squeezing the nerve ganglia, muscles, arteries, and veins that have to fit through an already narrow breathing space.

This caused a myriad of symptoms, including burning, aching, shooting pains, and tingling in my hands and neck, and a reduction of mobility and function in my neck, arms and hands.

Over the next several years, I tried various forms of physical therapy and a number of pain medications, none of which improved my TOS and most of which exacerbated the squeeze in the thoracic area, inflamed the nerves, and swelled the tissues even more, causing more pain.

Finally, I was pronounced permanently disabled and left to my own devices.

The only thing I'd found that helped keep my pain levels stable in all that time was walking. So, walking slowly for about 20-30 minutes a day and staying as quiet and calm as I could became the sum total of my pain management protocol.

After several years of stoically putting one foot in front of the other, both figuratively and literally, I thought, there has got to be something else I can do here.

I meditated before my injury and knew that calm meditation was often good for reducing stress as well as increasing overall health, so I thought it might help my nerve pain. It certainly couldn't hurt.

Except that it did.

The meditation forms I was familiar with called for sitting with an erect spine and breathing deeply and evenly.

Unfortunately, sitting in any one position for more than a few minutes increased my pain. Trying to keep my spine straight increased my pain. Breathing deeply increased my pain.

So much for meditation. Every so often, I would try again to see if anything had changed, but got the same results.

Yet something good did come out of it. In the process of trying, I began to pay attention to my breathing, at least for a few moments. Eventually, I noticed something startling.

Every time I began my brief little excursions into meditation, I noticed that I was holding or restricting my breath, as if I was afraid to breathe at all.

So I began watching my breathing patterns and putting my attention on my breath at various times during the day, whenever I thought of it.  I didn’t do anything else at first, I just paid attention.

What I noticed was that I was taking very shallow breaths and then stopping my breath in between them. I don't mean that I was filling my lungs with air and holding my breath. I mean I was barely breathing. Since breathing deeply increased my pain, I was unconsciously trying not to breathe.

This is understandable, and maybe it's something that you do too. If you check in with your breath right now, are you inhibiting its flow in order to try not to feel pain? Just notice that.

The problem with holding back the flow of breath is that it blocked the natural flow of oxygen in the body, and made the body tenser. I realized that I might be inhibiting the body's natural healing process by inhibiting the breath.

So, I started some experiments.  The first thing I did was notice my breath at different times during the day.  Then, I started consciously taking an easy breath and releasing it a few times calmly and freely. I didn't try to breathe deeply since that increased my pain, I just simply released my breath to flow more naturally.

The second thing I did was stop using my breath to push against pain. That meant I had to let pain be where it was without as much resistance from me. It was as if, by withholding breath from the pain - trying not to breathe in the painful area - I could force it to leave, or die, or I wouldn't have to feel it.

The third thing I did was to begin to breathe with the pain. In a sense, I included pain in my breath, rather than trying to stop it by not breathing in the painful area. I first imagined breathing around the pain, and then I imagined breathing through the pain, and then I imagined breathing with the pain, as if pain were breathing with me at the same time.

In short, I allowed pain to have breath.

This seems counterintuitive to most of us. We want to stop our pain, so we stop the flow of our breath. But it doesn't seem to work that well. Pain is already part of our experience, so resisting it doesn’t usually bring good results and it creates more stress and tension in the body.

Accepting pain for what it is and breathing with it helped me create a great deal more relaxation in the body, and thereby began to relieve the acute levels of pain I was in.

It seems like a paradox, but I found that giving pain permission to be where it was, so to speak, and allowing it breath, actually helped it to begin to move on.  I also noticed increased energy in my body overall, and I felt better emotionally.

After having worked with breath for several years now, I can say that, for me, these little breath awareness exercises have made a great deal of difference in my pain levels and overall well-being.

Sarah Anne Shockley is the author of The Pain Companion: Practical Tools 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.

Senators Seek to Silence Pain Patients

By Pat Anson, Editor

We’ve run several columns recently about the poor quality of pain care in hospitals and how many pain sufferers are treated as drug seeking addicts. Emily Ulrich’s column about her mistreatment in hospitals (“The Danger of Treating ER Patients as Drug Seekers”) really hit a nerve, generating hundreds of comments on our website and Facebook page from readers who shared their own hospital horror stories.

This makes a recent letter from a bipartisan group of U.S. senators all the more striking, because it seeks to silence hospital patients who are unhappy about their pain care.

In the letter to Health and Human Services Secretary Sylvia Mathews Burwell, Sen. Susan Collins (R-Maine) and 25 of her colleagues claim that many pain sufferers get opioid pain relievers far too easily in hospitals. To see the letter and the list of senators who signed it, click here.

“For millions of patients who are suffering from illness or injury, prompt delivery of pain control which may or may not include opioid pain relievers is proper and humane,” the letter states. “Yet inappropriate use of opioid pain relievers does not provide any clinical benefit and may actually pose a risk of harm. The evidence suggests that physicians may feel compelled to prescribe opioid pain relievers in order to improve hospital performance on quality measures.”

At issue is a Medicare funding formula that requires hospitals to prove they provide quality care through patient satisfaction surveys. The formula rewards hospitals that provide good care and are rated highly by patients, while penalizing those who do not. 

Collins and her colleagues asked Burwell for a “robust examination” of the patient surveys – and strongly suggested that questions about pain management be eliminated. The Medicare survey has 32 questions for patients about their hospital experience, including two that ask if a patient's pain was "well-controlled" during their hospital stay and if hospital staff did "everything they could" to help a patient with pain.

“Currently, there is no objective diagnostic method that can validate or quantify pain. Development of such a measure would surely be a worthwhile endeavor,” the letter says. “In the meantime, however, we are concerned that the current evaluation system may inappropriately penalize hospitals and pressure physicians who, in the exercise of medical judgment, opt to limit opioid pain relievers to certain patients and instead reward those who prescribe opioids more frequently.”

Some doctors agree with that sentiment.  

“I’ve just had conversations with several physicians in the last week and they were saying they felt pressured by patient satisfaction surveys,” Andrew MacLean, deputy executive vice president and general counsel of the Maine Medical Association, told the Portland Press Herald. “This type of inquiry would be helpful and we applaud the senator’s efforts.”

More people suffer from chronic pain than heart disease, diabetes and cancer combined, and pain is a major reason why people even seek admission to a hospital; so the senators are proposing that the opinions of a large segment of hospital patients be ignored, not that it isn't happening already. Pain patients frequently tell us they go without appropriate pain treatment in hospitals because they are quickly labeled as drug seekers. Some have horrific stories of mistreatment.

“My sister had Complex Regional Pain Syndrome (CRPS/RSD), went to 3 different hospitals was treated the same way. Finally she got a doctor that did his job, only to find out she had stage 4 cancer. She died less than 2 months from the time she got diagnosed,” wrote Melissa.

“My 13 year old daughter went in with chest pain and they told me she was having an anxiety attack. They did nothing. Two days later we found out from the children's hospital that she had a hole in her heart and could have died. ER doctors are the absolute dumbest, cruelest people I have ever met,” said Shannon.

“I used to work in an ER. Patient came in with tremors, talked of pain. She was quickly diagnosed as a pregnant drug addict who received no care and was sent home,” wrote another reader anonymously. “Two days later her husband brought her back demanding treatment. Doctor wanted to put her into rehab when she went into labor along with seizures. It wasn't drugs it was meningitis. She and the baby BOTH died.”

“I take Norco for chronic back pain. I go to the ER for a different medical issue and I get the looks and nothing to relieve my pain. I recently herniated a second disk in my back and was given nothing in the ER. I refuse to go to another one. If I am bleeding out or literally dying I don't know if I would go into another ER. All they do is judge because they can't feel my pain,” wrote Mistye Staten.

“Last time I was in the hospital and asked for medicine to control the pain I was told no. I said I at least wanted Ibuprofen and the nurse yelled at me to stop asking for narcotics,” said Amanda Hunt.

A recent study at Temple University Hospital in Philadelphia found that the rate of opioid prescribing dropped by about a third after tougher guidelines were adopted to discourage doctors from prescribing the drugs.

Only 13% of the doctors believed patients with legitimate reasons for opioids were denied appropriate care after the guidelines were implemented. A large majority – 84% of the doctors -- disagreed or strongly disagreed that patients were denied appropriate pain relief. Ironically, the researchers did not ask any pain patients what they thought about their hospital care.

Pain Patients Ignored in Reaction to Super Bowl Ad

By Nicole Hemmenway, Guest Columnist

While the issue of pain medication and addiction has been a hot topic in the media and government for quite some time, a TV commercial shown during the Super Bowl seemed to add more fuel to the fire. 

Initially, I thought these conversations would be beneficial to those of us – like myself – who deal with pain. I believed that in 2016 we had come a far way from judging people with disabilities, and that the patient voice would finally be heard for positive, proactive, and bipartisan change to occur.

I was wrong. Sadly, the focus has not been on the patient. Instead, media coverage (and a White House press conference) has chosen to only address the high rate of opioid overdose.

There is scrutiny from the public, those running our nation and the media that such an ad, designed by multiple patient advocacy groups to raise awareness about a serious issue (opioid induced constipation), is seen as a way to further stem the opioid epidemic. The ad became an excuse for politicians and high-profile individuals to push an agenda that only stigmatizes the pain patient more.  To my dismay, the patient voice wasn’t only lost in the rhetoric, it was obsolete.

I am angry. Very angry. We have two very serious problems happening in America right now: addiction and the pandemic of pain. In 2011, the Institute of Medicine reported that over 100 million Americans live with some type of pain brought on from a chronic condition, illness or injury. This is a staggering number that will only grow higher, and not enough is being done to help these Americans.

NICOLE HEMMENWAY

My issue is that it appears most people only want to state how terrible pain medications are, and how they are the reason we have such a high addiction and overdose rate. The only discussion to “fix” the crisis is to limit access to treatment. Repeatedly, I hear the answer is to deny legitimate people living with pain access to the treatments their providers deem beneficial for them. That is not a solution. This doesn’t solve or even curtail the problem. In my mind, I see it as a cop-out; a loosely fit Band-Aid if you will.

Let me be clear. I am not pro-drugs. In fact, the high doses of medications I was prescribed nearly took my life a decade ago. Thankfully, I was able to try countless treatment options and found my answer in a non-invasive electrical stimulation device, as well as diet change, light therapy, acupuncture, upper cervical care and exercise. 

I live in the San Francisco Bay area. Because of where I reside, I have access to every possible complementary therapy. I can try active release technique, reiki, healing touch and hot mineral springs. There are wonderful interdisciplinary programs nearby. Anything that may help me move past my pain is available. Yet the downside is that nearly none of these treatments are covered by insurance.

So while I have access to them – unlike rural areas, where finding a complementary practitioner is impossible – I also have to pay out-of-pocket. And they are not cheap!

The cost of my health insurance – like millions of others who need it – is obscene. For my family, our monthly premium is $827.34 (my husband’s employer contributes an additional $225). Our deductible is $9,000, with an out-of-pocket max of $13,000 for the year. This is the reality for most Americans. With that, how is it feasible for Americans living with pain to afford additional treatments? It is not.

The actual problem is not being addressed, and I would love to be given the opportunity to talk with White House Chief of Staff Denis McDonough, Senator Ron Wyden or Dr. Andrew Kolodny about the real issue. I believe most people taking pain medications want to lower their dose or even not need them. But there has to be other treatment options in place to help control the pain. What are we offering now? Nothing, really. 

That is the problem, and this is where I hoped the discussion surrounding the Super Bowl, pain care in America and addiction would have went this past week. Unfortunately, it did not. As a society, we keep missing opportunities to really advance the issue of healthcare and pain care. There is a serious pandemic called chronic pain that is widely misunderstood and inadequately treated.

Right now, the public persona sees those with pain as “junkies” (thanks Bill Maher for adding to the misperception). I take huge offense to that. We are not junkies or addicts. We are people following legitimate treatments our providers believe will help us. And even with that, many cannot receive the medications or care they need and deserve.

This, in my mind, is injustice. It is time to stop shaming a quarter of our population for having pain. They are just trying to find answers so they can return to a better quality of life.

So I leave you all with these questions to ask yourselves. When will the voices of those with pain be considered a priority to America? How can we make sure those with pain have access to ALL forms of care? What can we do to begin working together so we find a balanced approach to pain management?

There will be a solution, as soon as we start asking the right questions.  To start, America needs to care for those of us with invisible illnesses. Our voices must be part of the discussion, which sadly, they have not been. Let us do our part to change this now.

Nicole Hemmenway is vice-president of U.S. Pain Foundation, a non-profit patient advocacy group. Nicole is also the author of No, It Is NOT In My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon.

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.

Senator Alleges Conflict of Interest in Fed Pain Panel

By Pat Anson, Editor

An influential U.S. senator is raising questions about possible conflicts of interest on a federal panel that was highly critical of the CDC’s controversial opioid prescribing guidelines.

“I was alarmed to read of efforts by the members of the Interagency Pain Research Coordinating Committee (IPRCC) to weaken efforts underway at the Centers for Disease Control and Prevention (CDC) to develop guidance on opioid prescribing practices,” wrote Oregon Sen. Ron Wyden (D) in a letter sent to Health and Human Services Secretary Sylvia Burwell.

As Pain News Network has reported, several members of the IPRCC said the guidelines were “ridiculous” and “an embarrassment to the government” at a December meeting.

“Several non-Federal IPRCC members, their organizations, or both, appear to be recipients of funding from major pharmaceutical companies that manufacture opioids or related products at levels that raise serious concerns regarding the potential for conflicts of interest,” wrote Wyden. “These financial and professional relationships raise serious concerns about the objectivity of the panel’s members that deserve additional review.”

december, 2015 meeting of iprcc.

Wyden mentioned several of the panel members by name, including Myra Christopher and Dr. Richard Payne of the Center for Practical Bioethics, Penney Cowan of the American Chronic Pain Association and Cindy Steinberg of the U.S. Pain Foundation. All three non-profit organizations get a substantial portion of their funding from pharmaceutical companies, including Purdue Pharma, the manufacturer of OxyContin. Purdue gave over $100,000 to U.S. Pain Foundation in 2014, according to Wyden.

“I do not and have never been paid by a pharmaceutical company,” said Steinberg, who became a patient advocate after she suffered a serious back injury in an accident. Steinberg, who is National Policy Director for U.S. Pain Foundation, currently receives a small stipend of about $8,000 a year.

“I am fortunate in that my husband works to supports us.  I do this work despite my daily, debilitating chronic pain, often needing to lie flat in meetings to control the pain and lay across two plane seats to travel because I am passionate about improving pain care in this country,” Steinberg said in an email to Pain News Network.

“If anyone watches the video of the IPRCC meeting they will see that they had to bring in a special small sofa for me to lie on every hour so that I could participate. I am proud to do this work and am honored to represent the voice of millions of disempowered Americans who suffer from the pernicious disease of chronic pain and desperately need more and better treatment options."

Penney Cowan, another member of the federal panel mentioned by Wyden, also serves on the CDC “workgroup” that recently endorsed the agency’s recommended guidelines, which discourage primary care physicians from prescribing opioids for chronic pain.  

“When treating a person with pain, a health care provider needs to determine what is best for that individual based on physical examination, test results and what is important to the individual. The recommendations seem very clear on that point,” Cowan wrote in an email to PNN. “The American Chronic Pain Association advocates for a balanced approach to pain management - that means that all therapies such as PT (physical therapy), counseling, biofeedback and stress management, OT (occupational therapy), nutritional guidance and more should be available and used based on their appropriateness for each individual.”

Wyden’s letter does not mention that some IPRCC members who were most critical of the CDC guidelines are federal employees of the Food and Drug Administration and the Agency for Healthcare Research and Quality (AHRQ), who as government workers are not allowed to accept financial contributions.

The senator’s letter and an Associated Press story about it also fail to mention that the CDC itself has a foundation that accepts funding from healthcare companies such as Abbott Laboratories, Amgen, Medtronic, Johnson & Johnson, Merck, Quest Diagnostics and Pfizer,  companies which stand to benefit from the CDC guidelines because they offer non-opioid treatments or tests. The CDC Foundation accepted over $157 million from donors last year.  

Up to 11 million Americans use opioids daily to treat their chronic. A survey of over 2,000 pain patients by Pain News Network and the Power of Pain Foundation found that many fear losing access to opioid pain medication if the guidelines are adopted.

Our Search for a New Pain Doctor

By Marlee Hanson, Guest Columnist

I am 31, and my husband Ray is 34.  Ray is disabled.  His biggest daily struggle is chronic pain from  a serious back injury. Adding to our troubles is that we live in Montana, a state where there is an acute shortage of doctors willing to treat chronic pain with pain medication.
 
Ray has undergone multiple surgeries to fuse his spine.  We went into these surgeries knowing he would lose some range of motion, but hopeful that they would lessen his pain, allowing Ray to be the husband and father he desperately wants to be.  Sadly, the surgeries were difficult, the recoveries were long, and his pain has only worsened postoperatively.  The disappointment has been crushing.
 
Interventional pain procedures have sadly failed to help my husband as well.  He has endured diagnostic CT myelograms and developed post-procedure cerebrospinal fluid (CSF) leaks.  One was severe enough to require an epidural blood patch.  A CSF leak causes vomiting and a severe headache commonly known as a spinal headache.  These are not only painful, but can lead to meningitis.  The primary treatment is bed-rest.  When this fails, an epidural blood patch is performed.  Though it relieves the headache in most cases, it puts the patient at further risk of developing meningitis.

On many days my husband is not able to move, get out of bed, prepare food, or even take a simple shower because the pain is so severe.  Thankfully, Ray has found relief through opioids. Oxycodone allows him to function so he can be a husband and father.  It gives him enough relief that he is able to stretch and do physical therapy exercises. 

Exercise has also allowed him to rebuild muscle, improve stamina and helped decrease his pain.  None of this would be possible without the pain relief opioids provide him. Unfortunately, we fear my husband is weeks away from losing access to the one medication that truly gives him relief, as his physician’s license has been suspended.

Once we knew this was a possibility, Ray and I began seeking a new doctor to treat him. I believe my husband is a low risk patient.  He takes his medication as prescribed, does not abuse it, and has never been discharged by a doctor for misusing his medication. He has never overdosed. 

ray and marlee hanson

So far we have scheduled appointments with two doctors. The first one neither examined my husband nor reviewed the X-Rays and MRI’s we brought to the appointment. This physician made his treatment decision based on the prescription monitoring database and gave my disabled husband a prescription for one quarter of what he usually takes in a month, along with a pamphlet on vocational rehabilitation. 

We told the doctor Ray had already consulted vocational rehabilitation when it was suggested by his workers compensation caseworker.  We explained to the doctor how much opioids have reduced his pain and improved his ability to function.  The doctor said it was simply not worth the risk of his license being suspended.

Years ago, workers’ compensation and Social Security deemed that Ray was disabled, based on input from several physicians.  We felt this new doctor was not listening, and we were disappointed when he refused to provide the chronic pain management my husband needs. 
 
We were still hopeful that the second doctor, who was recommended by a friend, would assume responsibility for his care.  Ray waited five months for this appointment.  The day before the appointment, the doctor's office called to cancel, stating she would not see Ray for pain management. She also refused to fill his prescription.  He has taken these medications with good functional benefit for the past eight years.

We used to travel to Missoula for chronic pain management.  The trip was inconvenient and the long drive exacerbated his pain.  Eventually we were fortunate enough to find a physician in Helena near our home.  Unfortunately, we will now be forced to travel for appointments once again and deal with all that this entails.  Our next appointment will be in Great Falls.  If Ray does not receive care there, not only will we be forced to travel out of state, but my husband will also have exhausted his supply of medication. 

Ray is a law abiding citizen with a chronic pain condition that needs to be addressed.  Finding care is nearly impossible in the current regulatory climate.  I fear deeply that one day he will escape his pain by suicide.  Ray is not suicidal at all, but I fear if he is forced to go without medication, he will become bound to bed in pain, and I fear that suicide will be the outcome.

The government is looking at opioid pain relievers as harmful substances.  When these medications are illicitly used and abused there is a problem.  That problem does need to be addressed.  However, as harmful as those medications have been for some, they are just as helpful for others.  We do not need laws restricting or banning opioids; we need a nationwide effort to ease the suffering of those who are in pain.  We need doctors and practitioners who are trained in proper use & dosage of pain medication, as well as alternative pain treatment. 

Physicians need to look at chronic pain patients as individuals, just as they do with other patients.  Each condition varies in severity and everyone metabolizes drugs differently.  Please allow doctors to prescribe the medications Ray needs to survive so can be the husband and father he wants to be.  His children and I deserve that, as does he. 

Marlee and Ray Hanson live in Montana.

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.

Constipation Ad Leads to Laughs and Anger

By Pat Anson, Editor

Next to the game itself, probably the one thing people talk about the most to day after the Super Bowl are the TV commercials.

One commercial that is making quite a few lists as one of the worst is by drug maker AstraZeneca promoting its opioid induced constipation (OIC) drug. The black and white commercial features a constipated man envious of others (even a dog) who can easily go to the bathroom.

“The Super Bowl is known for inspiring lots of eating and lavish spreads of food. So why would advertisers pay millions to air ads focusing on constipation?” asked Eric Deggans of National Public Radio.  “There may never be a great time to air ads like this, but to broadcast such spots in an event where viewers are eating stuff like guacamole dip and pizza surely is the worst.”

“Nothing livens up a Super Bowl like a commercial about opioid-induced constipation,” said ESPN’s Dan Graziano on Twitter.

“Opioid Induced Constipation commercial during the Superbowl? Should have aired that during the Pro Bowl. Nobody gives a sh** about it,” wrote Don on Twitter.

Most of the Tweets aimed for laughs, but one by comedian and talk show host Bill Maher quickly went viral – and not because most people thought it was funny.

“Was that really an ad for junkies who can’t sh**? America, I luv ya but I just can’t keep up,” wrote Maher.

The depiction of opioid patients as “junkies” really got under the skin of pain sufferers and patient advocacy groups, some of whom are sponsored by AstraZeneca.

“You’re a funny guy but for many #chronicpain is real and opioids are needed for quality of life,” replied CreakyJoint.org on Twitter.

“This has to be the dumbest f***ing tweet I have read all day. Don’t ever become sick, sir. Just be glad for your perfect DNA,” wrote Ryan Stevens.

“I’m offended. Ad NOT for junkies but for people with CHRONIC pain who HAVE to have medicine to SURVIVE,” tweeted Caroline Evans.

“I am appalled at this, basically calling all people with pain junkies and making the side effect OIC seem like its no big deal,” said Paul Gileno, U.S. Pain Foundation. 

AstraZeneca paid CBS big money for its one minute spot, perhaps as much as $10 million – yet the commercial never even mentions the drug’s name, Movantik, which the British drug maker introduced in 2014.

The commercial may also have the unintended effect of giving more ammunition to those who want to further restrict access to opioid pain medication, a major goal of the Obama administration.

"Next year, how about fewer ads that fuel opioid addiction and more access to treatment," asked White House Chief of Staff Denis McDonough on Twitter.

"Our Administration is determined to control opioid addiction as a public health threat," replied White House press secretary Josh Earnest.

What to do Before Seeing a Doctor

By Barby Ingle, Columnist

When I first started having chronic pain issues, I would go into the doctor’s office and expect them to fix me. But we were talking two different languages and I was getting nowhere fast.

Learning to communicate with your doctors is important in your treatment plan. To do this most effectively, it is important to prepare. Improving your communication skills will lead to better treatment and pain relief.

Before seeing a doctor, try to put your thoughts in order so that you can accurately describe what you are experiencing. On days like the past few weeks, when I am in a full body flare and my pain is very high, my brain starts to mess up my words and even normal conversations become difficult.

Times like these made me realize that I had to get organized and prepare a checklist for my doctor visits. It’s part of becoming your own best advocate.

You can start by answering questions, such as “What did I do since I last saw this doctor?” Review past treatments and ask yourself, “Are they working and what makes the pain better or worse?”

It is good to keep a journal of your activities and pain levels so that you can reflect on these questions. Keeping a journal helps me organize my thoughts and answer these questions more precisely and accurately.

When you keep track of your pain, you gain a better understanding of what causes it, and what activities help or hurt. Prepare a personal history, be brief, and stick to the needed information on your checklist. If there are any concerns about your medications or if you would like to try a different medication you have researched, be able to explain why to your doctor.

Another important step is getting your emotions under control. I have found that if you go into the office showing frustration, anger, anxiety or other negatively perceived emotions, the doctor will be less likely to provide you with useful tools. Providers will focus on your mental status first.

I experienced this phenomenon a lot in the beginning of my search for proper treatment and diagnosis. So many doctors said, “Do you want to get better?” or “It is all in your head, so I can’t help you.” One physician even told me, “Try a different doctor. I am stumped and these symptoms don’t make sense.”

Letting your emotions get the best of you at the doctor’s office will create trouble. If you prepare ahead of time, you may still have these emotions, but you will be better able to keep them under control. You will also have a more productive doctor visit by staying on track and progressing forward with a treatment plan.

Go into the appointment having evaluated yourself and your symptoms. Keep yourself in check, stay calm and positive, and assist the doctor with finding the answers so that the outcome will be more beneficial for you.

Every provider is not the same. One of the most important decisions confronting patients who have been diagnosed with a serious medical condition is choosing a qualified physician who will deliver a high level and quality of medical care. Finding the "best" doctor to manage your condition, however, can be frustrating and time-consuming unless you know what you are looking for and how to go about finding it.

In the beginning of my ordeal, I followed what the doctors told me to the letter, even when I had doubts about their recommendations. My focus was on getting better and I was brought up to believe that doctors knew better and had all the answers. It took me almost three years after my accident to realize that this was a complete myth. Healthcare providers are human too, and they can make mistakes.

When preparing to see a provider it’s important to know your needs so you can be assertive and ready to listen to their instructions while in their office. Try to find a close friend or family member who can attend with you or record the exam on your smartphone so you can refer back to it between appointments.

The day before or on the morning of an appointment, write your questions out. I create a one page checklist that includes my medications/dosages, what I need a refill on, current issues, ongoing issues, past procedures, and questions. I use this checklist to guide my appointment so I cover everything important. I put my thoughts in order so that I get the best care possible.

Another time this comes in handy is in an emergency situation. About a month ago, I had to head to the emergency room after breaking my foot. I was simply walking in my house and walked into a wheel of a suitcase. My bones are fragile and I knew instantly from the sound and the pain that my foot was broken. I grabbed a copy of my latest checklist and headed out the door.

When the nurse came in to take my history and vitals, the pain was overwhelming, but my checklist answered most of her questions. I didn’t have to concentrate on making sure she got the right information, as my brain was clouded with severe pain at the time. That helped her help me. Being prepared is an essential element for proper diagnosis and treatment.

In my next column, I’ll have some tips on what to do during the actual visit to a doctor.

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.

What Alternatives do Pain Patients Have?

By Pat Anson, Editor

When the Food and Drug Administration last week endorsed the CDC’s controversial guidelines to limit opioid prescribing, the agency promised it would prioritize development of non-opioid alternatives for chronic pain relief.

“We are also working closely with industry and the National Institutes of Health to develop additional alternative medications that alleviate pain but do not have the addictive properties of opioids,” said Dr. Robert Califf, FDA Deputy Commissioner for Medical Products and Tobacco, who co-authored a “special report” on the FDA's new opioid policies the New England Journal of Medicine.   

“The FDA has approved non-opioid medications for treatment of various chronic-pain syndromes, including gabapentin (Neurontin), pregabalin (Lyrica), milnacipran (Savella), duloxetine (Cymbalta), and others, and a number of promising development programs are in the pipeline. But we need more. The FDA will use all the tools at its disposal to move these alternatives along as expeditiously as possible, while remaining mindful that all medicines have risks.”

The four drugs mentioned by Califf all have mixed track records, and many chronic pain sufferers have told Pain News Network the medications either don’t relieve their pain or have intolerable side effects.

“Gaba (Neurontin) did nothing for me and Lyrica seemed to help a very little with nerve pain but it made me very shaky, as if I drank a gallon of coffee,” wrote Pam Cushion.

“The side effects of Cymbalta were more than I could bear. I got terrible pains in the skin on my upper back and shoulders, and it made me feel downright awful,” said Tracy W.

“As opiate medications are lowered, my Lyrica dosage has gone up. It does have side effects like weight gain and next day fogginess,” wrote Kenneth McKenna. “I look for physicians to use other medicines in a similar fashion, (due to of the opioid restrictions) which may turn out to be a worse problem than the opioids themselves.”

Both Lyrica and Neurontin are coming under scrutiny in the UK because of increasing reports they are being abused by addicts to get high. Since 2012, over 60 overdose deaths in the UK have been linked to pregabalin and gabapentin.

Researchers in British Columbia also recently warned about the limitations of gabapentin, pregabalin, duloxetine, and venlafaxine (Effexor) when used to treat neuropathic pain.

“The best available evidence now indicates that as few as one in ten people can expect much pain relief from these drugs,” said Dr. Aaron Tejani, a Clinical Assistant Professor in the Faculty of Pharmaceutical Sciences and a member of the University of British Columbia's (UBC) Therapeutics Initiative Working Group. “Many people who improve are getting a placebo effect, or would improve in time without any drug treatment.  Others end up sedated, with impaired thinking, balance disturbance, dry mouth, or other side effects that cause more harm than good.”

The drugs may be ineffective for most patients, but Tejani says many doctors continue to prescribe them because of an exaggerated belief in their effectiveness. From 2005 to 2014, the number of British Columbians receiving pregabalin increased by 17 fold, according to UBC Therapeutics. Over three times as many prescriptions for duloxetine were written during that period, while gabapentin prescriptions nearly doubled. The use of venlafaxine, mostly for depression or anxiety, has been stable.

“Increasing evidence suggests that drugs have relatively little useful role for most patients with chronic pain. We should be much more cautious about prescribing them, and warn patients about their side effects,” said Dr. Tom Perry, a Clinical Assistant Professor in the Department of Anesthesiology, Pharmacology and Therapeutics and Chair of the UBC Therapeutics Initiative team.

Califf Nomination Still Stalled

The FDA’s sudden reversal on many of its opioid policies may have been intended to reduce opposition in the U.S. Senate to Robert Califf’s nomination as the agency’s new commissioner. Early indications are that strategy may not have worked.

“I will continue to strongly pressure the FDA to strengthen its oversight of opioid medications and will continue to push for the strongest possible framework for drug approval to ensure that the agency doesn’t simply continue to approve ever stronger and more deadly opioid medications under this new process,” said Sen. Joe Manchin (D) of West Virginia, one of five senators who are blocking Califf’s nomination.

Manchin has been particularly critical of the FDA’s failure on several occasions to accept the advice of its advisory committees, which have been reluctant to support the approval of new opioids. Last week Califf promised to appoint new advisory panels to review every new opioid that doesn’t have abuse deterrent properties.

“I believe the FDA should use the advisory committee’s expert advice for all opioid medications, including abuse-deterrent formulations, which are just as addictive and can be just as deadly as non-abuse deterrent opioids. The FDA also needs to commit to adhering to the recommendations that the advisory committee puts forward,” said Manchin.

Sen. Edward Markey (D) of Massachusetts also believes the FDA policy changes “fall short of what is needed.”

“While this is a good start, even more is required to ensure the FDA’s approval process protects Americans from the dangers of opioid painkillers,” Markey said in a statement. "Whether an opioid is abuse deterrent or not hasn’t prevented tens of thousands of people who have had their wisdom teeth removed or experienced lower back pain from getting addicted to these painkillers. That is why the FDA must change its decision not to seek expert advice about the risks of addiction before it approves abuse-deterrent opioids.”

Chronic Pain and Weather Study Underway

By Pat Anson, Editor

The Greek philosopher Hippocrates in 400 B.C was one of the first to note that changes in the weather can affect pain levels. A large body of folklore has reinforced that belief, with expressions like “feeling under the weather” and stories about people being able to predict a storm because they “can feel it in their bones.”

British researchers are investigating that ancient theory with a modern twist, a smartphone based study called Cloudy with a Chance of Pain that aims to prove whether there is an association between pain and weather.      

“This question has been around for more than 2,000 years, but it’s only now with widespread modern technology that we have the ability to answer it,” says Dr. Will Dixon, Director of The University of Manchester’s Arthritis Research UK Centre for Epidemiology.

Anyone in the UK with arthritis or chronic pain who is over the age of 17 can participate by downloading an app from here.

The app uses a smartphone platform called uMotif that allows users to record how they are feeling, while weather data is automatically collected using their phone’s GPS.

“And we’re not just inviting people to submit data – we want their ideas about the association between weather and pain too,” says Dixon. “We will be running a big citizen science experiment where anyone can explore the data and try and spot patterns and relationships in the data. We’ll gather ideas and theories from everyone to come up the best possible conclusion.”

Participants are encouraged to record their symptoms each day until the project ends in January 2017. Even people who don’t have pain can participate by browsing through the data and submitting their own ideas. Researchers hope to compile the information and develop “pain forecasts” based on weather predictions.

“Many people with arthritis believe that changes in the weather affect the level of pain they experience, however there is currently no scientific evidence to support this relationship," said Stephen Simpson, Director of Research & Programmes at Arthritis Research UK.

“This exciting study will for the first time enable us to investigate the link between pain and the weather. We’re delighted to support this project and we hope that the use of the uMotif app will help encourage a wide group of participants to take part, both in terms of submitting their data but also examining the results themselves to help our scientists reach a conclusion."”

The weather-pain connection remains controversial. A 2014 study in Australia found that acute episodes of low back pain are not associated with weather conditions such as temperature, humidity and rain.  And a 2013 Dutch study concluded that weather has no impact on fibromyalgia symptoms in women.

You can follow the University of Manchester study on Twitter at @CloudyPain.

You can also learn more by watching this video:

The Top 5 Questions Pain Patients Want Answered

By Pat Akerberg, Columnist

I’m sure you recognize them, the questions that invade your mind and take you down rabbit holes digging for real answers.  With our worlds turned upside down by chronic pain and/or illness, we want the kind of answers that make sense of our new reality.  We’re convinced finding those answers will somehow turn us right side up again.

So we ask various versions of why, how, what, where, and who questions.

Perhaps the question that haunts the most is the slippery “Why?” question.  It’s not long after you have a name for the source of your suffering that you ask, “Why me? Why did this happen to me?”  That question makes it very personal, like we were victims purposely targeted. 

It’s as if we believed that we were somehow immune, operating in a protective bubble that shielded us from all potential harm.  And when that bubble burst, an unexpected, unthinkable, and undeserved betrayal was visited upon us.

Why questions are slippery because they hold us captive in the lore that there is an answer that can be known with absolute certainty.  And they presume that having such an answer in hand would create a better outcome or even change it.   More often than not, why questions simply frustrate because most speculations masquerading as answers feel inadequate, unsatisfactory, and leave us wanting something more definitive.

One day I asked myself exactly who was I expecting to give me the answer to my “Why me?” question.  Was there anyone who could tell me with reliable authority whether it was my genetics that set me up for trigeminal neuralgia? Or was it my severe auto accident, a blood vessel pressing on my trigeminal nerve, the hefty amount of stress in my life, or a combination of all of those factors? 

The realization finally dawned that I wasn’t going to get the actual answer to “Why me?”

So with the biggest question unanswered, I moved on to the next questions.

If not why, then how did this happen to me?  How questions beg for specific factors that explain how the chronic illness came about, how the horrible pain started.

Sometimes I still ask myself how it is that I didn’t see or feel this coming, as if I could have.

Without one clear precipitating event, how questions have a tendency to defy real answers too, so they begin to give way to the more practical inquiries.  Once I crossed over into the “what” questions, being more proactive became possible. 

What questions identify potential actions that we can consider taking.  I started by asking, “What now?”  What options do I have?  What kind of specialist do I need to see?  What medications and/or treatments have the best track record?  What kinds of risks might be involved?  I searched for what I could read to help me learn and understand more about my condition.

Each of those what questions laid out paths to pursue for my neurological disorder and I went down all of them.  Some worked better than others and some failed me completely, but that wasn’t from lack of trying.

The what questions that aren’t very helpful are the “What if?” ones.  That’s because in my experience they tend to dredge up fears of worst-case scenarios or self recrimination.  Asking yourself “What if I had only (fill in the blank)” is an example of punishing self doubt for impossible to forecast outcomes.

Certain answers to what questions will automatically cause us to ask “where” questions.  Where questions are those that attempt to pinpoint a location or direction for us to investigate. 

For instance, if there’s a specific treatment or surgery, where are the best medical centers for those?  Or, if medication or treatment didn’t work, it’s time to tale stock and ask “Where do I go from here?”  Sometimes we can benefit by asking where to find support groups (in person or online) to connect with people dealing with the same issue.

When at an impasse, we find ourselves stepping back to process all we’ve been through by asking ourselves where we fit now or where our situation is taking us.

It seems that where questions naturally fold into questions that ask about who.  Who questions have a direct purpose; they are asked to locate an expert with a solid track record that might offer help.    

We ask others with successful outcomes who they were treated by or who operated on them.  We wonder who we will relate to the most when we join a support group or who might offer the best help or resources for assistance.  

Over time, I even came to wonder who among my dwindling friends would stay with me for the long haul. 

However, the most important who question that I continue to ponder now is, “Who am I now that this progressive, painful disorder took over my life?”

I would say that the jury is still out on that answer.  But I’m working on it, as I’m sure many of you are too.  And it’s not surprising that sorting out answers to an internal core question like that would involve asking ourselves those same five questions in search of meaningful answers we can accept:

1)  Why would I think I was immune from harm?

2)  What have I learned that I wouldn’t have otherwise?

3)  Who do I want to be in response to this life change?

4)  Where are these important insights taking me now?

5)  How do I choose to reframe this experience and my purpose?

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research 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.

FDA Endorses CDC Opioid Guidelines

By Pat Anson, Editor

In a move that may have more to do with politics than healthcare, the U.S. Food and Drug Administration has set aside the advice of its own experts by endorsing the CDC’s controversial guidelines for opioid prescribing.

The move is part of several sweeping changes the FDA is making in its opioid policies, including some that the agency has resisted in the past. The most significant change is support for the CDC’s proposed opioid guidelines, which are designed to combat the so-called epidemic of opioid addiction and overdoses.

“We are determined to help defeat this epidemic through a science-based and continuously evolving approach,” said Dr. Robert Califf, FDA Deputy Commissioner for Medical Products and Tobacco.

“Things are getting worse, not better, with the epidemic of opioid misuse, abuse, and dependence. It’s time we all took a step back to look at what is working and what we need to change to impact this crisis.”

Califf’s nomination to be the next Commissioner of the FDA has been held up in the U.S. Senate, in large part by senators who want the FDA to go much further than it has in restricting access to opioid pain medication.  

ROBERT CALIFF, MD

“We need to change the culture of the FDA, and that will not happen if the person at the helm is not a champion who is committed to pushing back against the pressure to continually approve new opioid medications given the significant risks to public health,” said West Virginia Sen. Joe Manchin (D), who has criticized Califf for his ties to the pharmaceutical industry and threatened to filibuster his nomination.

In a news release issued late Thursday, Califf said FDA would “re-examine the risk-benefit paradigm for opioids,” use tougher language in warning labels on extended release opioids, and prioritize development of non-opioid alternatives for pain.  The FDA also promised to convene an expert advisory committee before approving any new drug applications for opioids that do not have abuse deterrent properties, one of Manchin's key demands.   

“I was very disappointed that Califf would release a statement like this as talk of blocking his nomination for FDA Commissioner grows in the Senate amid concerns that he was ‘soft’ on a range of issues, including genetically modified salmon, e-cigarettes, and regulation of opioids,” said Anne Fuqua, a chronic pain sufferer and patient advocate.

“I am concerned his desire for career advancement is interfering with the oath he took to ‘first do no harm’ when he became a physician.  This statement is heavily focused on the potential harms of opioids. Though it says they will seek to balance individual and societal risks, it seems that the need to prevent people from making poor choices will be given priority over providing care to individual pain sufferers for whom opioid therapy has proven to be an essential element of care. “

The FDA’s opioid policy changes are further outlined in a “special report” in the New England Journal of Medicine that was co-authored by Califf.

“We will start by launching a broad reexamination of our approach, considering how best to apply existing policies to this problem, which policies need to be improved and updated, and whether new policies must be developed,” Califf wrote.

“Accordingly, we are supporting the CDC’s Guideline for Prescribing Opioids for Chronic Pain. The draft guideline received extensive public comment, and we look forward to participating in the process when the CDC finalizes it soon. We are also supporting the Surgeon General’s efforts to engage the clinical community in a concerted approach to curbing inappropriate prescribing and proactively treating opioid addiction, while reinforcing evidence-based approaches to treating pain in a manner that spares the use of opioids. Until clinicians stop prescribing opioids far in excess of clinical need, this crisis will continue unabated.”

Some of the FDA’s own experts have been highly critical of the CDC’s proposed guidelines, which discourage primary care physicians from prescribing opioids for chronic pain. As many as 11 million Americans use opioids daily for chronic pain and many fear losing access to them if the guidelines are adopted.

“I think we need to recognize that CDC wants to substantially limit opioid prescribing. Period,” said Sharon Hertz, director of the FDA’s Division of Anesthesia, Analgesia and Addiction Products, at a December meeting of a federal pain research panel. Hertz said the evidence cited to support the guidelines was “low to very low and that’s a problem.” Other panel members said they were “appalled” by the guidelines, calling them an “embarrassment to the government.”

The CDC planned to implement the guidelines last month, but delayed doing so after widespread complaints about its secrecy and lack of transparency during the guidelines' development. The CDC is now reviewing changes to the guidelines recommended by an advisory committee.

“I guess it shouldn't surprise me that the FDA is selling out by endorsing the CDC guidelines,” said Kim Miller, a pain sufferer and patient activist. “Could it be the FDA was not wanting to be made to look irrelevant in light of the CDC taking care of what many see as the FDA’s territory? Either way, it's an extremely gloomy looking horizon if you're a pain patient. Just when you think it can't get any worse, it always does.”

"It is a sad day for chronic pain patients in this country. The unintended consequences of these guidelines will bring about a true epidemic; not the media manufactured so-called epidemic of overdoses from opioids," said Chrystal Weaver, a Florida woman who suffers from Complex Regional Pain Syndrome. "The last figure I heard quoted for veterans taking their life is around 42 per day. When you take away the only tool we have to help lessen the pain from war injuries you'll see that number skyrocket from 42 per day to perhaps 500 per day. It will be the same story for non-veterans as well."

Earlier this week, the Obama administration said it would ask Congress for $1.1 billion in extra funding to help fight the opioid abuse epidemic. Most of the money would be used on expanding addiction treatment programs.

Why I Hate February

By Crystal Lindell, Columnist

I effing hate February. First of all, it should be spelled Feburary. It’s called phonics, people.

And then, everyone who is happy and well-adjusted gets to brag about the fact that they found true love for a whole freaking day. The Bears are never in the stupid Super Bowl. And there are no longer any Christmas lights to get us through the eternally dark days.

Also, it’s the anniversary of when I first got sick.

I guess that’s the real issue. I will forever associate it with the worst thing that has ever happened to me. Sorry, February.

Feb. 4, 2013 was the day I went to the ER, and it means it’s been three years exactly since I first woke up with rib pain. Even though I’ve been doing better lately, I’m still extremely broken — both physically and emotionally. My ribs still hurt if I do too much, or get too stressed, or rain is coming, or Pretty Little Liars gets too intense.

And I’m having the worst anxiety from the long-term morphine withdrawal. 

Like anxiety attacks that leave me crying in the middle of Target on a Friday afternoon for no reason, other than the fact that I have convinced myself that I’m never going to get married or have kids, and that I will likely die broke and alone in an apartment filled with old newspapers and cats. And I’m allergic to cats.

It sucks.

Every day when I wake up I have to constantly tell myself: Today is a new day. The sun is up — again. The sun always comes up. And today you get to start over. Today will be better.

I have been trying to look back over all the progress I’ve made since last year at this time — I lost weight! I feel mostly better! I got out of a relationship that needed to end! But I usually just end up thinking about what my life would have been like if I had never gotten sick.

My painniversary is one of those days that stop me in my tracks. It’s bigger than New Year’s and more stunning than my birthday every year.

It’s one of those days where I woke up three years ago assuming my life was just going to go according to plan, but instead the world ended. It’s the kind of anniversary nobody expects to ever have.  

They say that Virgos are really hard on others, but it’s only because they are hardest on themselves. As a Virgo, I can tell you that it’s true; I’m totally judging you, but it’s only because I think I suck.

I should have lost more weight by now. I should be married with kids by now. I should have finished my freaking book by now. How come I can’t get completely off the morphine? What is wrong with me? These are the thoughts that constant anxiety and horrible pain plant in your head.

I wish it was different. I wish I was a cliché motivational poster or something and I could write about how I’m a better person now — a stronger, more compassionate person. How being sick made my faith stronger and made me amazing. But that’s not real life. Being sick didn’t make me stronger. It made me weaker and it broke me into a bunch of shattered pieces and it’s going to take a long time to put me back together.

I’m using this app called Calm to try to meditate. I even paid $9.99 for a month worth of extended meditations. I’m forcing myself to work out. And I’m trying to write through all my emotions.

But at the end of today, it’s still today. The three-year anniversary since I first woke up with rib pain, went to the ER and everything I ever knew got all effed up. 

Tomorrow is a new day though. The sun will come up — again. The sun always comes up. And tomorrow I get to start over. Tomorrow will be better.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

Cellphone Towers Amplify Pain in Amputees

By Pat Anson, Editor

For many years there has been a debate about the possible health effects of cell phone towers, power lines and other transmission devices that create electromagnetic fields (EMFs). These magnetic and electromagnetic frequency waves pass right through us, raising concern that they might cause cancer and other adverse health effects.

A new study by researchers at The University of Texas at Dallas suggests that cellphone towers may trigger neuropathic pain, especially in amputees that suffer from phantom limb pain.

"Our study provides evidence, for the first time, that subjects exposed to cellphone towers at low, regular levels can actually perceive pain," said Dr. Mario Romero-Ortega, senior author of the study and an associate professor of bioengineering in the University's Erik Jonsson School of Engineering and Computer Science. "Our study also points to a specific nerve pathway that may contribute to our main finding."

Most of the previous research into the possible health effects of cellphone towers has been conducted on individuals with no diagnosed, pre-existing conditions. This is one of the first studies to look at the effects of EMFs on amputees.

For years, retired Maj. David Underwood noticed that whenever he drove under power lines or near other electromagnetic fields, he would feel a buzz in what remained of his left arm. When traveling by car through Texas' open spaces, the buzz often became more powerful.

"When roaming on a cellphone in the car kicked in, the pain almost felt like having my arm blown off again," said Underwood, an Iraq War veteran who was injured by an improvised explosive device (IED). His injuries resulted in 35 surgeries and the amputation of his left arm.

"I didn't notice the power lines, cellphones on roam or other electromagnetic fields until I first felt them in my arm," says Underwood.

After learning about Underwood’s experiences, Romero-Ortega decided to study the phenomena.

He and his colleagues thought that neuromas -- inflamed peripheral nerve bundles that often form due to injury – could be more sensitive to EMFs. To test their theory in a laboratory, they assigned 20 rats into two groups -- one receiving a nerve injury that simulated amputation, and the other group receiving a sham treatment.

Researchers then exposed the rats to a radiofrequency electromagnetic antenna for 10 minutes, once per week for eight weeks. The antenna delivered a power density similar to what a human would be exposed to 125 feet away from a cellphone tower.

By the fourth week, 88 percent of the rats in the nerve-injured group demonstrated a behavioral pain response, while only one rat in the sham group exhibited pain. After growth of neuroma and resection -- the typical treatment in humans with neuromas who are experiencing pain -- the pain responses persisted.

"Many believe that a neuroma has to be present in order to evoke pain. Our model found that electromagnetic fields evoked pain that is perceived before neuroma formation; subjects felt pain almost immediately," Romero-Ortega said. "My hope is that this study will highlight the importance of developing clinical options to prevent neuromas, instead of the current partially effective surgery alternatives for neuroma resection to treat pain."

Romero-Ortega says since the research produced pain responses in rats similar to those in anecdotal reports from humans such as Major Underwood, the results "are very likely" generalizable to humans.

"There are people who live in caves because they report to be hypersensitive to radiomagnetism, yet the rest of the world uses cellphones and does not have a problem. The polarization may allow people to disregard the complaints of the few as psychosomatic," he said. "In our study, the subjects with nerve injury were not capable of complex psychosomatic behavior. Their pain was a direct response to man-made radiofrequency electromagnetic energy."

At one point in the study, members of the research group showed Underwood video of subjects in the experiment and their response to radiofrequency electromagnetic fields.

"It was exactly the same type of movements I would have around cellphones on roam, power lines and other electromagnetic fields," said Underwood.

Until the study was published online in PLOS ONE, there was no scientific evidence to back up the anecdotal stories of people like Underwood, who reported neuropathic pain around cellphone towers and other technology that produce EMFs. .

Phantom limb pain is a common and painful disorder that many amputees feel after their limbs are removed. The origin of the pain and sensations from the missing limb are not well understood. There are nearly 2 million amputees in the United States, according to the Centers for Disease Control and Prevention.