Exercise Best Prevention for Low Back Pain

By Pat Anson, Editor

Regular exercise significantly reduces the risk of developing low back pain, according to new research that found other therapies such as ergonomics, back belts and shoe inserts do little to prevent it. Lower back pain is the world’s leading cause of disability.

Researchers at the University of Sydney in Australia analyzed nearly two dozen back pain studies involving over 30,000 people to see which therapy works best in preventing low back pain. Their study, reported in JAMA Internal Medicine, found “moderate quality evidence” that exercise or a combination of exercise and education work best.

“For exercise to remain protective against future LBP (low back pain), it is likely that ongoing exercise is required. Prevention programs focusing on long-term behavior change in exercise habits seem to be important,” wrote lead author Daniel Steffens, PhD, of the University of Sydney. “The available evidence suggests that education alone, back belts, shoe insoles, and ergonomics do not prevent LBP.”

Over 80 percent of us suffer acute low back pain at least once in our lives, and about half will experience a recurrence within one year.  

The researchers estimate that exercise results in a 35 percent reduced risk of developing low back pain within a year; while exercise and education reduces the risk by 45 percent.

“If a medication or injection were available that reduced LBP recurrence by such an amount, we would be reading the marketing materials in our journals and viewing them on television. However, formal exercise instruction after an episode of LBP is uncommonly prescribed by physicians,” wrote Timothy Carey, MD, and Janet Freburger, PhD, of the University of North Carolina at Chapel Hill, in a commentary also published in JAMA Internal Medicine.

“This pattern is, unfortunately, similar to other musculoskeletal problems in which effective but lower-technology and often lower reimbursed activities are underused. In one study, fewer than half of the patients with chronic LBP or neck pain who were surveyed received exercise instruction despite a good evidence base for its effectiveness.”

Carey and Freburger said physicians and professional societies need to start working together to establish exercise guidelines for low back pain, and health insurance companies “will need to be convinced” about the benefits of exercise for them to start covering it. 

A 2015 study by BMC Health Services Research found that early physical therapy for low back pain significantly lowers healthcare costs by reducing the use of expensive treatments such as spinal surgery, injections, imaging and pain medication.

Are Chronic Fatigue Sufferers Afraid of Exercise?

By Pat Anson, Editor

Research published in a respected British medical journal is fueling a new debate over exercise and whether it helps or hurts people suffering from chronic fatigue syndrome.

Researchers at King’s College London reported in The Lancet Psychiatry that most chronic fatigue sufferers have “fear avoidance beliefs” that exercise will only make things worse.

Chronic Fatigue Syndrome (CFS) -- also known as Myalgic Encephalomyelitis (ME) –  is characterized by severe tiredness, disturbed sleep and a weakened immune system, along with muscle and joint pain. CFS is a comorbid condition often shared by fibromyalgia and other chronic pain sufferers.

The King’s College study followed 641 CFS patients who were given cognitive behavioral therapy (CBT) and graded exercise therapy that included light exercises such as walking. CBT encourages patients to think differently about their symptoms.

When used together, researchers say the two therapies helped about a third of the patients recover from CFS, primarily by reducing their fear that exercise and activity would only worsen their symptoms.

“Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity,” said Professor Trudie Chalder of King’s College London. “Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.”

Many CFS sufferers were outraged by the study and the way it was reported by the news media, feeling it added to a stereotype that they were lazy couch potatoes and malingerers.

“This article has made me so angry. This journalist should live my life for a few days and then maybe they’d reconsider what they wrote,” said one woman in an online comment to a Daily Mail story.

“Sometimes having a shower is like climbing a mountain,” wrote another CFS sufferer. “Until one of these ‘experts’ has had to literally crawl back to bed shaking and ill from just trying to clean their teeth I don’t think they’ll ever be able to understand what we go through.”

“Given the number of athletes and sportspeople diagnosed with this neurological disease, trying to pass it off as 'fear of exercise' is laughable. And lazy!” wrote another reader.

An American neuroscientist also weighed in, disputing the theory that exercise is an effective treatment for ME/CFS.

“Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS,” wrote Mark VanNess, PhD, a professor at the University of the Pacific in a letter published in the ME blog, Just ME. “Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial.

“For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain.”

Some skeptics in the medical community refuse to accept ME/CFS as a real disease, although it was classified as a neurological disease by the World Health Organization in 1969.

According to the National Alliance for Myalgic Encephalomyelitis, nearly 1 million people in the U.S. and 17 million worldwide have ME.

My Life with CRPS

By Chrystal Weaver, Guest Columnist

I have been suffering from Complex Regional Pain Syndrome (CRPS) Type 2 for nearly six years. I first got this disease as a result of a botched back surgery called a kyphoplasty.

The bone cement they used was too thin in consistency, which allowed it to travel to my epidural space and kill off most of the axons in my nerves; which in turn caused my left foot and ankle to be paralyzed with indescribable burning pain, electric shock pain, bone crushing pain, and pins and needles pain.

It’s been nearly six years of living hell.

I was 46 when this happened and I was working as a CPA in Florida. At the time, we had pain management clinics in abundance and doctors were not afraid to prescribe opiates. They worked with you to get your dose to the point where it was effective for your individual needs, without causing side effects like over sedation.

The dose of medication I was on took my pain down from a 9 or 10 to a bearable 3 or 4 level. I was able not only to continue to work, but to attend my son’s baseball games, go to the beach with him, take him on vacations and be an active mom.

Then when Florida got all the bad press due to pill mills, and the DEA and state law enforcement cleared out the bad operators, good doctors also got caught up in the net. This had a profound effect on doctors who were using pain medication in good faith and a “chilling effect” occurred. Pain management doctors left the field in droves. Those who remained were unwilling to maintain me on the regime I was taking and that was working for me.

chrystal weaver

CRPS has the nickname “the suicide disease” for a very good reason. It is not curable and there is no effective treatment for the disease. Any medication, narcotic or non narcotic, is prescribed “off label” because there is not one medication approved for CRPS by the FDA. I tried spinal cord stimulation, nerve blocks, Prialt, antidepressants, anti-seizure medication, and acupuncture. I couldn’t bear for my foot or lower leg to be touched, so massage was not an option. I even had high dose ketamine infusion treatment at the University of Miami. All to no avail.

Because of the aggressive law enforcement tactics that shut down the bad operators, the pendulum has swung the other way to the extreme. There were huge unintended consequences in Florida’s efforts to shut down the pill mills. I was taken down to about 30% of the old dosage I was on, which allowed me to work and be a great mom. The new dosage never gets my pain below a level 6.

I ended up losing my job due to poor performance and had to apply for Social Security disability after a 25 year career in the accounting field. I stopped going to baseball games, that my son wants desperately me to see, but I just cannot go. I am now home-bound and cannot perform the activities of daily living. If I did not have a 12 year old son, the pain has been so unbearable I would have taken my life by now.

I do not exaggerate when I say this pain is like being a prisoner of war. It can take the most mentally sound, happy and stable person, and make that person wish that they would not wake up. This should not be happening in the most advanced country in the world.

The saddest part of all is that the government actions did not even solve the problem of people abusing drugs and overdosing. The people that were abusing narcotics have switched to the much easier to obtain and much cheaper heroin. The population that has been greatly harmed by what the government has done is the legitimate chronic pain patients in Florida and indeed all over the United States.

The heavy handed tactics used by our government gained nothing. The people who want to abuse drugs have turned to a much more dangerous substitute, where they have no clue regarding the potency of what they are putting in their bodies, nor do they have any idea of the contaminants they are ingesting. We have traded a decrease in prescription opiate abuse for increased heroin abuse, while leaving legitimate chronic pain patients severely undertreated and in many cases untreated for their pain.

Every person is unique. Cookie cutter recommended dosages do not work for human beings. There will always be outliers on both sides of the bell curve. Some people do well with small doses of opiates and some people require higher doses to bring their pain down to a manageable level.

I understand that the CDC’s prescribing guidelines are meant for primary care physicians. However, it is highly likely that pain management doctors will follow the guidelines as well. Even if a pain specialist were to prescribe doses above the guidelines for patients with diseases that are debilitating painful, it would be impossible to find a pharmacy willing to fill the prescription. We already are having a very real problem being able to fill prescriptions now.

I cannot imagine how much more difficulty chronic pain patients will have accessing their medication should these guidelines go into effect. I cannot even count how many times I have been forced into withdrawal after spending over $150 on taxi fare going from pharmacy to pharmacy, only to be told that they do not have the medication in stock or that they no longer carry that medication. I am a single mother. I have no family living that can help me take care of my son when I lay on the couch in level 10 pain from CRPS and the pain of withdrawal. No one should be made to suffer like this. No one.

I don’t enjoy taking narcotics. I purposely had my baby at home with midwives and no pain medication or epidural because I did not want unnecessary medical interference with what is a natural occurrence. I can take pain. It was my first and only child.

I explored the possibility of getting my left leg amputated below the knee if that would free me from the pain of this disease. But it does not take away the pain and CRPS does spread. It is now in my right foot and lower leg. 

So there is nothing more that I can do medically to treat the pain effectively, except for taking opiates at the dose and combination that was effective for me. But I have no way of obtaining that same dose and combination of short and long acting opiate medications that allowed me to live at a level 3 or 4 on the pain scale. My son needs his mother and for the last 5 years I am still breathing, but I certainly am not living.

I also want to emphasize that there are numerous diseases and conditions that are not malignant, but are just as painful if not more painful than cancer pain. CRPS is listed as a rare condition by the National Institutes of Health, but there are many more orphan and rare diseases whose primary feature is severe debilitating pain with no cure and no real effective treatment.

Alarmists cite an increase in opiate prescriptions without putting it in the proper context. Most baby boomers are in their fifties or sixties now and people are living longer due to medical advances. Sun Belt states like Florida have a higher retirement population than northern states do. Pain was undertreated in the early 1990s before pain was classified as the fifth vital sign.

Alarmists also point to the number of deaths from opiates being over 16,000 annually. But they have no way of knowing if that person intended to take their life or if the death was accidental. 16,000 deaths does not an epidemic make. I shudder to think of the real epidemic that will occur if these arbitrary guidelines are adopted by the CDC. Wounded veteran suicides will dramatically increase, along with suicides from 100 million chronic pain patients in this country. Some will begin to abuse alcohol to try to get relief. I’m certain that some will be willing to break the law and turn to the streets for heroin if they happen to know where they can obtain it.

Pain should be managed as we manage diabetes in this country. You are prescribed the number of units you need to get your blood sugar as close to 100 as possible without causing your blood sugar to drop too low. Pain has been subjective until the advent of the functional MRI. Pain doctors can verify that you are in pain using fMRI.

We would never lock up 100 people in prison if one of them were guilty of murder just to punish the one murderer. But this is precisely what has happened in the treatment of chronic debilitating intractable and incurable chronic pain. In order to protect a small portion of the population from themselves, our government has cast 99 innocent people in prison in order to punish the one murderer.

Drug addicts will always be able to obtain their drug of choice, while chronic pain patients languish in their homes unable to participate in life; waiting and wanting to never wake up because the pain is going to be the same as the day before, just like the movie Groundhog Day.

I was very active and enjoying my life, my career and my son until one medical procedure changed my life forever. Your life can change in a blink of an eye. A loved ones’ life can change in the blink of an eye. Every human being deserves to have their pain managed appropriately. Anything else amounts to torture.

Chrystal Weaver has submitted these comments to the CDC. The public comment period on the CDC's opioid prescribing guideline continues until January 13th.

You can make a comment by clicking here.  The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

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

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

CDC Holds First Public Hearing on Opioid Guidelines

By Pat Anson, Editor

After months of controversy over its guidelines for opioid prescribing, the Centers for Disease Control and Prevention (CDC) held its first true public hearing today on the proposed guidelines – which many pain patients fear will make opioid pain medication much harder for them to obtain.

The CDC planned to implement the guidelines this month with little public input, but was forced to change course after widespread criticism about its secrecy and lack of transparency during the drafting of the guidelines, which would discourage primary care physicians from prescribing opioids for chronic pain. As many as 11 million Americans use opioids for long-term chronic pain.

“We have heard some concerns about the process. We’ve done a lot, but want to be sure there will be no concern about the final guidelines when released,” said Debra Houry, MD, director of the CDC's National Center for Injury Prevention and Control, which is overseeing development of the guidelines.

“As a part of our response, we are proposing the establishment of a workgroup under the BSC (Board of Scientific Counselors) to review the guidelines and the feedback we have received from stakeholders, peer reviewers, and importantly the public. We want to ensure that this workgroup includes diverse perspectives of experts, stakeholders and consumers invested in reversing this epidemic, while cognizant of the need for safe and effective pain management.”

The CDC nominated a workgroup of ten health care experts to review the guidelines and advise its Board of Scientific Counselors, most of whom have expertise in workplace injuries, but little experience in pain management. Unlike a previous workgroup known as the “Core Expert Group,” the new workgroup has broader experience in pain management, pharmacy, primary care practice and patient advocacy:

• Erin Krebs, MD, MPH
• Mitchell H. Katz, MD
• Mark Wallace, MD
• Gregory Terman, MD, PhD
• Katherine Galluzzi, DO
• Christina Porucznik, PhD, MSPH
• Penney Cowan, American Chronic Pain Association
• Chinazo Cunningham, MD, MS
• Anne Burns, RPh
• Traci Green, PhD, MSC

Krebs and Porucznik were members of the original Core Expert Group, while Cowan and Terman were part of a "Stakeholder Review Group" that also advised the CDC.

The BSC approved the CDC's nominees with little discussion, although it encouraged the workgroup to add additional members, if needed. Only one member of the BSC voted against the nominations.

No members of Physicians for Responsible Prescribing (PROP) were nominated by the CDC to be part of the new workgroup. As Pain News Network has reported, five PROP board members advised the CDC during the initial drafting of the guidelines. PROP is funded by Phoenix House, which runs a chain of addiction treatment centers, and critics had complained the PROP members were biased and had conflicts of interest against the use of opioids.

Several pain patients said they wanted to see more patients in the workgroup. Penney Cowan of the American Chronic Pain Association was the only one nominated by the CDC.

“I want this panel and this group to have patients. You need to hear our side,” said Diane Gracely, who said she has been a chronic pain patient for 46 years. “The goal of the CDC is to reverse the prescription drug epidemic. I think this is inhumane to us chronic pain patients. The voices of chronic pain patients need to be heard by the CDC and the DEA. We need you to listen to us. You’re pushing more patients to the street for drugs and causing more suicides.”

The new workgroup is expected to meet at least four times to review the guidelines, a process that could delay finalizing the guidelines for several months.

“The guidelines will be an important and essential step in reversing the prescription drug epidemic, said Houry. “Given the lives lost and impacted every day, we have an acute sense of urgency to issue guidance quickly.”

That urgency was also stressed by CDC director Thomas Frieden, MD, who spoke briefly by telephone during the hearing.

“We know we don’t have ideal evidence, but we also know that we can’t wait,” said Frieden, who claimed prescription opioids were “fueling an increase in heroin use” and that their benefits were “largely unproven and uncertain.”

“Addressing the prescription drug overdose epidemic is one of CDC’s top priorities. Overprescription of opiates for pain is the key driver of this epidemic and we believe the epidemic can be reversed. Key areas will be to improve prescribing for both pain and for addiction. There are definite, often fatal risks, including both addiction and death with prescription opiates.”

The public can still comment on the CDC's prescribing guideline until January 13th. You can make a comment online by clicking here. 

The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

My Journey From Doctor to Chronic Pain Patient

By Lisa Kehrberg, MD, Guest Columnist

I'm a 41-year old family practice physician living in the Chicago area. I worked in private practice directly after residency and then worked for the Veterans Administration in an outpatient clinic the remainder of my short career.

Much of my work involved treating patients with chronic, non-cancer pain. Little did I know at the time, this was more of a training course for me to become the very patient I was treating. 

In 2011, my 39-year old big brother died suddenly and unexpectedly at home. He was a criminal defense attorney living in our home state of Oklahoma at the time. His death was shocking since I was unaware he had any serious medical conditions. Getting his medical records was even more shocking. His physical symptoms were attributed to psychological causes. 

His death was the worst life situation I had experienced. I'd never felt such emotional pain. I also began to have physical symptoms. I had bouts of severe abdominal pain, headaches, vomiting, dark urine, numbness in my hands, and fatigue. 

In 2013, when I was the same age my brother died, I had very severe abdominal pain with vomiting and foot drop. This time the pain was too intense to tolerate and I went to an emergency room. I was admitted and had a CT scan, endoscopy, and a colonoscopy. All of these tests were unremarkable, yet I was getting sicker each day.

Initially, when speaking to the hospital doctors involved with my care, I assumed the diagnosis would be found and I'd receive appropriate care. The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced. It was a hot, burning pressure that was like lava and hot razor blades filling up my abdomen. My stomach distended to appear 9 months pregnant.

LISA KEHRBERG, MD

Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.

I was shocked and in disbelief. How could my colleagues not believe me? Did they think I was lying? And why would I lie? I had a busy life with two young children, a husband and worked full time as a physician. I had rarely gone to doctors in my life and only taken opioids after the few surgeries I had.

Clearly the doctors didn't listen or believe me, because on day 3 of the first hospital stay, I was discharged home, doubled over in the most excruciating pain ever. I was unable to tolerate even liquids and vomited continuously. At home I never even made it upstairs. I lay on my couch getting sicker and sicker. I was getting short of breath and having palpitations. My pulse was very rapid and blood pressure high.

I went to a different hospital emergency room within 24 hours of discharge from the first hospital. After about a week of tests, the doctors were able to diagnose me with a rare genetic metabolic disease called acute intermittent porphyria.

Before figuring out the cause of my pain, doctors at this second hospital not only listened to me, but believed me. My pain was very aggressively treated the entire time I was there. I was believed, as all patients should be. Time wasn't wasted on judging and all energy went towards helping me.

Eventually I received hemin, which is an infusion used to treat porphyria. I was diagnosed and received treatment just in time and fortunately I survived, unlike my brother. 

Learning to Live with Porphyria

Because the disease had became so severe before being diagnosed and treated, I have permanent nerve damage. I have severe abdominal pain from visceral neuropathy every day. I have also had back-to-back porphyria attacks since 2013. Porphyria attacks are known to be excruciating and a patient experiencing one will normally be hospitalized and get IV morphine.

What happens to patients like me who have back-to-back attacks without a break ever? Do I live in a hospital? I spent the first 3 months of this ordeal hospitalized the majority of the time. I began to wonder if I would spend the rest of my life as an inpatient. But I wanted to live and go back to my life somehow.

The only way to stay out of the hospital is palliative care; treating the symptoms at home. I've been unable to work and spend most of my time too sick to leave my house or do much. The disease is very unpredictable, so it's impossible to plan much. At least I can see my children every day. I survive by putting my energy into loving my children and taking things hour by hour. Just making it through one day is a challenge. 

One of the most common causes of death from porphyria is suicide. This isn't surprising. I always wonder how people who are sick like me keep surviving. To live in continuous excruciating pain every minute of every day with no end in sight is quite the challenge. Now imagine living this way with no pain medication. I will tell you that it's not possible. The pain from this disease if left untreated is not compatible with life.

At that first hospital, I tried to find a window I could open and jump from. I felt like I was on fire. I wasn't depressed. I was in pain. How would someone like me exist in life without pain medication? I couldn't. Impossible. It would be like performing abdominal surgeries on patients without anesthesia. It's so beyond my comprehension how the medical community can have such little empathy for those who are sick, in pain, and disabled. 

My palliative care doctor is wonderful. He has compassion and listens to me. He believes me and doesn't judge. He has saved my life and the reason I'm able to attempt living life and not continuously be readmitted to the hospital.  

Last summer I went to a new doctor who specializes in pain and is a physiatrist. I was hoping he may have some ideas. He listened to my story, then said he couldn't help me since I took opioids. He told me my pain must be "emotional.” He said patients without cancer should not be taking opioids chronically.

I asked him what someone like me can do. I explained it’s like having a blow torch in your colon all of the time and how do you exist that way? He shook his head and rolled his eyes. I left crying.

I still cry when I think of that interaction. How could a physician, a person supposedly trained to offer healing and compassion, treat any human being this way? If I was healthy and was working in the same hospital as this doctor, he would be inviting me to lunch. But because I met him while sick and disabled, I'm judged. No compassion, much less treatment. 

Now that I've entered the world of chronic pain, I've had the opportunity to talk to hundreds of patients suffering like me. The majority have uncontrolled pain. They are forced to jump through many hoops each month just to get the medication needed to offer a little relief. I've talked to many who plan suicide someday, because they are unable to get appropriate pain management. This isn't depression. It's pure physical torture. I can't imagine people needlessly dying because they are unable to get medication to ease their suffering. Medication that's available. These people have children, are someone's child, have siblings, friends, etc. 

Physicians see a patient for 10-15 minute appointments and don't understand that the person’s pain continues after that office visit. Physicians who think opioids shouldn't be prescribed for chronic non-cancer pain are wrong. Ask these same doctors how they plan to treat the pain and you learn there is no plan.

I suspect these doctors don't understand the concept of continuous pain. If a doctor refuses to treat a patient’s chronic pain and that patient commits suicide from pain, then somebody should be held accountable. This is criminal and completely preventable. 

I'm saddened to see what's happening with the CDC's opioid prescribing guidelines. I would really like the CDC to suggest how to treat my severe back-to-back porphyria attacks. Too many doctors are being investigated for opioid prescribing. This is meant to scare doctors not to prescribe. Doctors should be receiving training on how to prescribe opioids and treat chronic pain patients. Doctors who treat chronic pain patients are saving lives everyday. They should receive only praise.

Lisa Kehrberg, MD, is a family practice physician who specialized in pain management. You can read more about Lisa at the American Porphyria Foundation’s website.

Lisa is also featured in this report on Acute Intermittent Porphyria:

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.

Spine and Hip Fractures Raise Risk of Chronic Body Pain

By Pat Anson, Editor

Breaking a bone in your spine or hip may be so traumatic that it doubles your chances of developing chronic widespread body pain such as fibromyalgia, according to a large new study by British researchers.

The study, published in the Archives of Osteoporosis, utilized an existing health database of over half a million adults to investigate associations between fractures of the spine, hip or upper and lower limbs, and the development later in life of chronic widespread body pain. Researchers at the University of Southampton also considered the possible effects of other factors, including diet, lifestyle, body build, and psychological health.

They found that men and women who had a spine fracture and women who had a hip fracture were more than twice as likely to experience long term widespread pain than those who did not have a fracture.

"The causes of chronic widespread pain are poorly characterized, and this study is the first to demonstrate an association with past fracture. If confirmed in further studies, these findings might help us to reduce the burden of chronic pain following such fractures," said lead researcher Nicholas Harvey, Professor of Rheumatology and Clinical Epidemiology at the University of Southampton.

"Chronic widespread pain is common, and leads to substantial health related problems and disability. Past studies have demonstrated an increased risk of chronic widespread pain following traumatic events, but none have directly linked to skeletal fractures."

Physical and emotional traumas have long been identified as risk factors for chronic widespread pain. For example, people involved in motor vehicle accidents are at greater risk of developing fibromyalgia, and rates of chronic widespread pain are known to increase after major disasters such as a hurricane or earthquake. Until now, there was no evidence that bone fractures could trigger such a response.

“Interestingly, the associations appeared strongest for fractures at the hip and spine, compared with fractures in the upper or lower limbs,” wrote Harvey. “High levels of morbidity and decreased survival following a hip and spine fractures is well documented, as are the potential changes in body shape, such as kyphosis, leading to pain and respiratory difficulties following vertebral fracture.”

Data for the research was collected from the UK Biobank study, which maintains records on almost everyone who utilizes the UK National Health Service.

8 Tips for Living with Chronic Pain

By Ellen Lenox Smith, Columnist

Getting a diagnosis of chronic pain or any condition that will be with you for the rest of your life is heartbreaking and overwhelming. But when the dust has settled, you have mourned your old way of life and begun to accept the new life you will have to adjust to, there are things you need to think about to make the rest of your journey more productive and peaceful.

 1. End anger and redirect

It is so easy to get stuck feeling, “Why me?” or “What did I do to deserve this?” It takes courage and strength to turn this around, put a smile on your face, and instead learn how to cope with what you have been given.

Awhile back, a doctor’s letter was posted online on what it is like to deal with a patient who has a chronic problem that will never get better. It  was an amazing insight into what goes through a doctor’s mind. They go into medicine to help others and people like us come to them that don’t fit into that box.

Remember, they are human and it will bother them not to be able to fix you. Their compassion is what we need. When a doctor shows through his words and actions they’re trying to find solutions for me, I come home grateful that they care. We can't expect the medical field to fix the impossible - but we also have to live with hope and not give up.

     2. Prepare for appointments

When you go to a doctor’s appointment, we all know there is usually very limited time and if you are not careful, you’ll forget to ask things that are important. Trying to call the office after and asking for an answer to those questions later can be an annoyance for them and is preventable.

Try to go to the appointment prepared. Living with a complicated condition, you owe it to yourself to  be prepared so you stay on point with what needs to be accomplished. To help get ready:

• Keep a list at home before the appointment and jot down things that pop into your mind that you want to address and then take that list with you.
• If you have a lot to cover, consider making a second appointment to cover the rest.
• Arrive with your medical cards and co-pays.
• Have a list of your current medications, dosages and supplements.
• Have a list of any medications you have reacted to.
• Have contact information of other doctors treating you.
• Have a list of past surgeries and important tests and the date and location of where they took place.

I keep my medical records on file so I can refresh it with information such as new medications, tests, surgeries, etc. and make sure I keep a copy in the car in case of emergencies.

3. Be willing to think out of the box for solutions

As you accept a long term health issue, another thing you want to consider is keeping an open mind. New ideas, tests, treatments are always happening. Try to think out of the box and if something can’t hurt you but just may help you, consider giving it a try!

4. Learn to put things to rest that are out of your control

You are already fighting with your emotions coping with a chronic condition. At some point, it is helpful to learn to let things go that are just out of your control. You didn’t ask for this condition, so why remain angry?

Your life will never be the same, so try to find peace and redirect towards more reasonable and productive activities. Maybe you had to step away from your career, but there could be something new you can take on to supplement your income. Or maybe you can find a good opportunity to advocate to help others coping with a similar condition.

5. Patience and more education

We have to learn to accept, although it is frustrating, that not all doctors can possibly know how to address all of our difficult conditions. Take this issue and help to make the changes needed. Consider speaking out by educating those that are trying to help you and those that have no knowledge. Possible suggestions:

• Take copies of helpful information to hand to them and ask them to read
• Ask to speak to staff, young medical students, nursing students, or physical therapy students
• Set up awareness tables at local events
• Write letters to the editor at local and national newspapers
• Call your congressman for suggestions
• Set up a pain awareness event to help educate others and bring in a guest speaker or panel forum

Be proactive and help with the much needed education, so the next person in line with what you are facing has an easier road to follow!

6. Start a support group to help others – not to just sit and complain

Along with educating the medical field, you also need to think about a support system that can help others like you in the community. We have set up a site where we list willing doctors that will take our difficult cases, brought speakers into our support group, and shared with each other to try to soften the journey we are on.

Try to prevent the group from using it as a format to complain and whine, but instead use it to educate and help direct each other.

7. Prepare for a hospital emergency

This topic was approached by Barby Ingle in a recent column, Power of Pain: Making a Hospital Stay Easier.  I encourage you to read it. There were many helpful tips suggested to prepare for the possibility of an emergency visit and also for a planned surgery.

We are responsible to know about us and share our information, so think to prepare this while you are alert and able to be as complete as possible. And share with someone where you keep this list. I always keep a copy in the car to be safe!

8. Be grateful to those that reach out and try to help

A person living with chronic pain becomes a host of many issues and that can be overwhelming for others too. So when someone reaches out and cares about you and tries to help in any capacity, remember to count your blessings.

We have all experienced some close friends, family and even medical personnel that have chosen to step away instead of embracing us. It is painful to experience. So when you meet anyone who is kind to you, remember to focus on that and try to let go of the hurt from the others.

We don’t need to add any more stress to our lives, feeling let down and disappointed by those others. And believe me, it is easy to write this and harder to follow. Look and treasure those that come into your life due to your circumstances and try to not look back!

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

For more information about medical marijuana, visit their website.

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

The CDC and Profit Driven Drug Testing

(Editor’s Note: As part of its draft opioid prescribing guidelines, the Centers for Disease Control and Prevention (CDC) recommends that physicians “use urine drug testing before starting opioid therapy and consider urine drug testing at least annually to assess for prescribed medications as well as other controlled prescription drugs and illicit drugs.”  Mark Collen is an expert in this field and has submitted the following to the CDC.)

By Mark Collen, Guest Columnist

There are a number of conflating factors which have led to the CDC‘s recommendation for urine drug testing (UDT) in pain management -- none of which have to do with quality patient care. These include the federal government‘s complicity in the overprescribing of drugs, the unethical marketing of OxyContin by Purdue Pharma, the profit motive which drove drug testing patients in pain, and physicians‘ fears and inability to effectively treat pain.

We live in a drug addled society with Americans consuming record amounts of prescription drugs, including opioids. In other words, American healthcare providers are exceptional at writing prescriptions. Someone needs to tell them to, “Just say no.”

The pharmaceutical industry‘s direct-to-consumer advertising (DTCA) has driven demand for drugs and has contributed to the escalating cost of prescription medications. Both Congress and the FDA are largely responsible for this overprescribing public health issue since they have allowed DTCA to exist and spread.

What has not been investigated is the influence the incessant drug ads have had on the American culture and more importantly, the American psyche in terms of one‘s views on drug use, prescription or otherwise. Almasi and colleagues write, “DTCA pushes a ‘Brave New World‘  where if anything unpleasant should somehow happen, why, there‘s always [the sedative] soma to give you a holiday from the facts.” DTCA may influence the abuse of opioids and other drugs.

The pharmaceutical company Purdue Pharma was responsible for one of the most deceptive marketing campaigns in history with their medication OxyContin, a timed-release oxycodone. Art Van Zee writes, “A consistent feature in the promotion and marketing of OxyContin was a systematic effort to minimize the risk of addiction in the use of opioids for the treatment of chronic non–cancer-related pain.” As a result, OxyContin became the poster boy for prescription drug abuse and Purdue was fined $600 million to settle criminal complaints. That has had little impact on the Sackler family, Purdue‘s owners, with Forbes estimating their worth at $14 billion.

Although Purdue is not completely responsible for the current opioid abuse epidemic, they certainly have played a meaningful role. In addition, a congressional investigation suggested that the pharmaceutical industry has promoted opioid sales through a number of organizations including the American Pain Society and the American Academy of Pain Medicine, both of which write treatment guidelines. 

As opioid abuse and overdose deaths began to rise, so did the drug testing industry within pain management. Drug testing labs used a similar strategy as the pharmaceutical industry in promoting their wares and money was used as an incentive to drug test. 

In my 2012 article entitled, “Profit-Driven Drug Testing,” I presented Medicare data which showed a meteoric rise in drug testing:

“A deeper examination finds that between 2000 and 2009, the total number of CLIA-waived drug tests paid for by Medicare and conducted at physicians‘ offices increased approximately 3,172,910%; with 101 tests conducted in 2000 and 3,204,740 in 2009. Furthermore, during that same time period and within the specialty of anesthesiology, CLIA-waived drug tests increased 63,687,900%.”

The annual cost of drug testing in pain management is estimated at $2 billion per year. Unfortunately, that may be a gross underestimate since no study has ever evaluated the indirect costs of patient harm or harming the therapeutic patient-provider relationship—likely the most important aspect of pain management. A November, 2014 article in the Wall Street Journal reported that some physicians are making more money from drug testing patients than treating them.

Not unlike big pharma, there appears to be a dearth of integrity in the drug testing industry. Millennium Health, the largest drug tester in pain management, was recently fined $256 million by the U.S. Department of Justice and then filed for bankruptcy. This led to the discovery that the founders took $1.3 billion out of the business in 2014.

Ameritox, the second largest drug tester, actually paid physicians to drug test their patients, and as a result was fined $16.3 million by the Justice Department. Calloway Laboratories is yet another drug testing lab that was prosecuted and it is going out of business.

This author asked Debra Maul, a whistleblower in the laboratory industry, for her comment on UDT in pain management for this paper. Debra wrote, “Personally, I believe it‘s all about the money. When I entered the laboratory business in 2003, it was very difficult to get physicians to test their patients. In 2007, when Millennium entered the industry with the POCT (point of care tests) business model, pain doctors significantly increased their patient testing, I believe, because they could make money on in-office testing. New labs were popping up everywhere promoting this business model.”

She continued, “If you look at the information the WSJ obtained from CMS regarding Medicare reimbursements for UDT, reimbursements for simple UDTs grew significantly from 2007 until reimbursements were cut in 2010. Then in 2011 and 2012, high tech drug testing took a big jump, I believe, due to laboratories promoting in-office analyzers and other high-tech testing equipment to doctors, so they could continue billing for UDTs. It will be interesting to see what happens with in-office testing and the entire UDT market, with the significantly reduced reimbursements this year.”

What follows is a list of drug testing labs and the amount they were reimbursed by Medicare for urine drug testing in 2012. These numbers come from Medicare‘s website and were provided by Debra Maul:

• Millennium: $109,031,768
• Ameritox: $99,553,258
• Aegis: $36,140,368
• Alere: $16,937,116
• AIT: $13,845,880
• Dominion: $12,551,313
• Calloway: $6,918,972

To complicate matters, healthcare providers do a poor job at treating chronic pain and opioids may not be the best choice for the long-term treatment of chronic, non-acute, non-malignant pain. Moreover, insurers have been known to reimburse for pain medication and not physical therapy. It is likely that a number of clinicians prescribe opioids because they don‘t know what else to do, and then perform random drug tests in hopes of mitigating any damage they may cause, but it does not work. There is a great need to develop and test cost effective, alternative interventions to pharmacotherapy for the treatment of chronic pain and illness in the primary care setting.

The overriding factor in this historical perspective is the consistent and negative impact industry has on medicine and in this case, pain medicine. A good example of how close the drug testing industry gets to individuals who write guidelines, please go to this link and note the presenter is the lead author of the CDC guideline (Dr. Deborah Dowell) and a conference sponsor is a drug testing lab (Ameritox). 

There is no question that industry has a negative influence on medicine. Stamatakis and colleagues write, “The industry has created means to intervene in all steps of the processes that influence healthcare research, strategy, expenditure and practice. These include evidence base production, evidence synthesis, understanding of harms issues, cost-effectiveness evaluation, clinical guidelines formation, healthcare professional education and direct influences on healthcare professional decisions.”

Urine drug testing in pain management costs an estimated $2 billion per year and there is no proof of efficacy. Moreover, it may cause patient harm and harm to the patient-provider relationship and thus increase healthcare costs even further. 

The desire for profits likely started and maintains UDT in pain management along with fear. Fear of prosecution has been attributed to the proliferation of drug testing by doctors treating chronic pain. Goldberg and Rich write, “This singular focus strongly suggests purposes beyond ensuring quality patient care, such as fear of regulatory scrutiny and potential legal liability.”

The CDC has turned a blind eye to a number of important issues regarding UDT in pain management, including its constitutionality and the fact that it was likely driven by profits. Group think can negatively influence treatment guidelines and that is likely to blame for the CDC urine drug test recommendation. Giving a person with pain a “choice” to either submit to a drug test or not receive pain medication is really the option to either submit to a search or suffer, and that is coercion. It exemplifies patriarchal medicine at its worst and is the antithesis of patient-centered care. 

James L. Madara, MD, CEO of the American Medical Association, was quoted as saying about the CDC guideline, "The guidelines and supporting discussion are devoid of a patient-centered view and any real acknowledgment or empathy of the problems chronic pain patients may face."

The CDC should not recommend UDT as part of the current guideline since there is no proof of efficacy, it may be unconstitutional, and was likely driven by profits and nurtured through fear. Furthermore, it is very expensive and may cause harm to the patient and patient-provider.

Mark Collen is an independent scholar and patient advocate. He serves on the editorial board of the Journal of Pain & Palliative Care Pharmacotherapy, and has peer reviewed manuscripts for journals including The Patient: Patient-Centered Outcomes Research, The American Journal of Pharmacy Benefits, and The Clinical Journal of Pain. 

Mark is also the founder of PainExhibit.org, an online art exhibit from artists with chronic pain, which seeks to educate healthcare providers and the public about chronic pain through art, and to give a voice to the many who suffer in silence.

This column is an abbreviated version of the comment Mark has submitted to the CDC. The full version of Mark’s comment can be read here.

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.

Communication is Key with Chronic Pain and Illness

By Jennifer Martin, PsyD, Columnist

Have you ever felt like the people in your life have no idea what you are going through?  Like they just don’t get it?

Your friends keep asking you to go out with them for a late night, even after you have told them a thousand times you can’t do things like that anymore. 

Your husband doesn’t understand why some nights you just don’t want to be touched. 

Your parents don’t get why you can’t do 10 things per day like you used to.

The truth is, unless it happens to them, your loved ones will never fully understand what you are going through.  And you can’t expect them to.  There are some things you can do however to try and ease some of your frustrations.  In my opinion, communication is key.  And if you are thinking right now, “All I do is communicate and they still don’t get it,” then maybe it is time to try a new tactic.

It is essential to find a way to communicate with your loved ones about your wants and needs. This is so essential because everyone’s wants and needs are different and we as humans are not mind readers. 

Your loved one may think he is helping you when he does the laundry so you don’t have to, but for you that may not be something you want help with.  It may be the one activity you can do without pain and it may help with your sense of purpose. 

Or you may want your very active family to slow down a little because you can’t keep up anymore without pain and exhaustion.  But you haven’t told them yet because you don’t want to change their way of life on account of you.

How are the people in your life supposed to know these things unless you tell them?

Or maybe you have tried to communicate these things and they just don’t get it.  What do you do then?

The first step is to find the right time to communicate.  Over drinks in a loud bar or right before bed when everyone is tired may not be the best time.  Find a time to have a sit-down conversation in a quiet room with your loved ones, whether it is one person at a time or all together.  Think about what you want to say beforehand and write down some notes, so you make sure to talk about everything you want to.

Next, if needed, educate them a little on your condition and how it affects you.  You may be surprised by how little people know about chronic illnesses, even those closest to you.  They may understand the basics about your condition, but not enough to help you in the way you need them to.  They may not understand how dramatically life has changed for you or how much you struggle.

Finally, talk to them about how they can support you.  Tell them what you want from them and what you need from them.  Mention some of the things they are doing that are very helpful and that you would like them to continue and then help them understand what you need them to do differently. 

For example: “It is really nice of you to help me with the laundry but that is something I would like to do on my own.  It gives me a sense of purpose and makes me feel like I am accomplishing something.  Instead, I would really like for you to help more with the dishes.  That is more difficult for me to do and it really hurts.”

It may take more than one conversation for your friends and loved ones to really begin making the changes you would like.  But if you keep gently reminding them what you want and need, it is likely that you will see some changes.

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.

Supplements Help Relieve Pain of Osteoarthritis

By Pat Anson, Editor

Two natural dietary supplements are effective at relieving pain and stiffness caused by osteoarthritis, without the side effects caused by non-steroidal anti-inflammatory drugs (NSAIDs), according to two new research studies.

One study found that a combination of glucosamine and chondroitin was effective in treating knee osteoarthritis (OA), while the other study examined an herbal treatment used for thousands of years in Chinese medicine to treat joint pain.

Osteoarthritis is a progressive joint disorder caused by painful inflammation of soft tissue, which leads to thinning of cartilage and joint damage in the knees, hips, fingers and spine.

The first study was a meta-analysis (a study of studies) involving over 16,000 patients with knee OA. Published in the journal Scientific Reports, it is the first study of its kind to compare glucosamine, chondroitin, and the two in combination, against the NSAID celecoxib or a placebo in the treatment of knee OA.

Researchers found that the combination of glucosamine and chondroitin was associated with significant improvement in pain relief and functional enhancement, compared to placebo, without the high rate of gastrointestinal side effects in patients who received celecoxib.

There was "no significant difference" in pain relief between celecoxib and the glucosamine/chondroitin combination.

"This comprehensive analysis provides us with a wealth of historical data supporting the safety and efficacy of glucosamine and chondroitin in the management of joint health. It is consistent with recent findings suggesting that the efficacy of this combination is comparable to celecoxib in terms of relieving pain and improving function," said lead author Chao Zeng, MD, of the Department of Orthopaedics at Xiangya Hospital at Central South University in Changsha, China.

"This is important news for patients requiring long-term treatment, as the potential side-effect associated with profiles of NSAIDs such as celecoxib warrant consideration of alternative treatment options that are safe and effective."

Glucosamine and chondroitin are both found in healthy cartilage, which acts as a cushion between the bones in a joint. In dietary supplements, glucosamine can be harvested from shells and shellfish or made synthetically. Chondroitin can also be made in a lab, or manufactured from cartilage found in cows, pigs, sharks and other animals.

Chondroitin and glucosamine are popular in supplements used to treat joint pain, but according to the Arthritis Foundation, “most studies assessing their effectiveness show modest to no improvement compared with placebo in either pain relief or joint damage.” The American Academy of Orthopaedic Surgeons also recommends against their use.

The second, smaller study examined the effectiveness of Arthrem, a dietary supplement made in New Zealand that contains an herbal extract from the plant Artemisia annua (Qinghaosu), which has been used in Chinese medicine for more than 2,000 years.

Forty-two people with osteoarthritis of the knee or hip were enrolled in the randomized, controlled study, which was published in the journal Clinical Rheumatology. Researchers say patients who took an Arthrem capsule twice a day for 12 weeks had a significant reduction in pain and stiffness and an increase in their physical function.

"The published results show that the natural product, Arthrem, has potential as an anti-inflammatory/analgesic in osteoarthritis," said Dr. Sheena Hunt, study co-author and principal scientist for Promisia Integrative, the company that makes Arthrem and conducted the study.

"Particularly positive results were observed in a subset of patients with mild to moderate osteoarthritis. In this subgroup, the average magnitude of pain after 12 weeks of taking Arthrem was less than half of the value at the start of the study. Arthrem at this dose was also well tolerated with no treatment-related side effects."

Arthrem recently became available in the United States. Those who qualify can sign up for a free, no obligation, two month trial online at www.Arthrem.com.

Compared to pharmaceuticals, the U.S. Food and Drug Administration loosely regulates the $35 billion dietary supplement industry and many manufacturers' claims about their products are unverified.  The agency recently announced plans to tighten enforcement of the industry by creating a dietary supplement office.

The World Health Organization estimates that about 10% of men and 18% of women over age 60 have osteoarthritis.

Power of Pain: Growing Older with Chronic Pain

Barby Ingle, Columnist

I am another year older. At 43, I should be in my prime, but I live with chronic pain. Chances are I passed my peak health on the proverbial mountain and am headed back down when it comes to my health.

My friends are getting older as well. I hear more complaints about painful knees and hips, backs, and breathing difficulties. Those are common symptoms among older adults, with about 30% of adults 65 and older reporting knee pain or stiffness and 15% reporting hip pain or stiffness.

There has to be a way to lessen the blow of growing old, even for those of us with chronic pain. Although they are not taught well in society, there are actually life choices we can make that will lessen the pain and limitations.

Where should we start? Exercise is a good place, but don’t overdo it. Good eating habits are essential, but remember to splurge a couple of times a month. Increase your water consumption too, unless advised by a healthcare provider to limit fluids. Another challenge for me and probably you is getting enough sleep.

There has to be a way to lessen the blow of growing old, even for those of us with chronic pain. Although they are not taught well in society, there are actually life choices we can make that will lessen the pain and limitations.

Where should we start? Exercise is a good place, but don’t overdo it. Good eating habits are essential, but remember to splurge a couple of times a month. Increase your water consumption too, unless advised by a healthcare provider to limit fluids. Another challenge for me and probably you is getting enough sleep.

Posture is another area. When we are young we see the elderly hunched over. When we are in pain we tend to do the same tuck and comfort position. If you pay attention to your posture, it will be a great benefit to staying upright and breathing deeper, providing more oxygen and helping maintain a healthy body weight.

Living with all of this in mind is difficult, but important. The goal should not only be to live a long, happy and productive life, but do it well. Moments of prevention, especially in our youth and young adulthood, can add up to additional life experiences that you would have missed. Work on your strength (physical and mental), moderate your lifestyle, and practice balance, endurance and flexibility skills.  

I have to remind myself to take a break. Even if I can’t sleep, I go into a quiet dark area and let my brain have a break from all of the stimuli in our environment. Living with pain is a pain in itself, but luckily for us there are safe and effective ways to manage it. It is important to learn what is available and what we need to make available for better daily living.

Aches and pains are NOT a normal part of aging. If we learn how to recognize our bad behaviors and practice better ones, we can overcome many of the battles of growing older with chronic pain. Learn how to recognize, understand and properly treat your pain.

This takes a little work to get started, but once it becomes habit, it gets easier and easier. Be sure to use the resources available to you: providers (develop a team), pharmacists, caregivers, positive people, local churches and community centers. One of the things we did for my mother before she passed was get local high school kids to come in and check on her, and help her with tasks that needed done around her house. Many high schools now have mandatory volunteer hours for graduation. Check your local resources, support groups, and community groups for tools you can use to better your life.

When pain lasts for more than a few months it usually has an underlying disease that is the cause. For the elderly, two widespread causes are diabetes and arthritis. Both can be warded off with proper care throughout the life cycle. If you find yourself already in pain while reading this, it’s never too late to start. It is important to pay attention and admit that you are feeling bad. The sooner you take care of yourself the better your outcomes will be over time.

Working on the core lifestyle actions; posture, nutrition, good behaviors (limited or no smoking/drinking), and exercise will go a long way when it comes to prevention and maintenance of your body.

Also take into consideration what treatments you are willing to participate in. Doing noninvasive treatments first, unless in an acute health situation, is important. The less stress and trauma you bring to yourself the better off you will be. Some noninvasive options would be warm baths, relaxation, moderate physical activity, or non-prescription pain relievers.

Always let your providers know if you have a change in the pain’s location, intensity, and sensation. Be sure to rule out any other underlying causes. Providers may also try medications, herbal or supplemental products, medicated lotions, acupuncture/pressure, chiropractic, massage, physical therapy, occupational therapy, nerve blocks, radio frequency ablations, and other surgical procedures. As a pain patient I have learned that we are all different, what works for me doesn’t always work for my best friend, or even family members who suffer with chronic pain.

I will leave you with some important pain facts for the elderly. If a person has pain, even at the end of life, there are ways to help. It’s best to focus on making the person comfortable, without worrying about possible addiction or drug dependence.

Many older people have been told not to talk about their aches and pains because it is a part of getting older. But it is not a given that since we are getting old we will have pain.  Don’t put off going to see a doctor because you think the pain is just part of life. Early and proper care is best when working to address the pain and its cause.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation and 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.

Medical Necessity or Addiction?

By Lisa Davis Budzinski, Guest Columnist

All of the issues surrounding the CDC’s opioid guidelines and opioid pain medication being compared to heroin are quite stressful to those of us who are disabled and seeking quality of life on a daily basis.

Does everyone understand that there are “healthy” people that take prescribed medications just to deal with life?

That there are young adults who experiment with prescription meds that were not prescribed to them by a doctor?

That there are people who buy on the street the same prescription drugs that we use?

And that there are people who get injured but heal and no longer need pain prescriptions?

We all see the abuse and misuse of pain medications, but what about those of us who will not or cannot ever heal again? It’s one thing to break a limb and know you are going to heal up in 6-8 weeks. But what about those of us who are not ever going to heal? 

I had a stroke that damaged my central nervous system, leaving me with Central Pain Syndrome, a neurological condition that causes constant pain. There is no cure and few treatments help. I do not have a diagnosis of being better a few months down the road. And I’ve had to come to the realization that I will have pain every day of my life.

I can have some quality of life and get the pain scale down to a 6-7 by taking Tramadol daily. Using Robaxin keeps my muscles from stiffening up or being spastic every hour of every day. I also take Zoloft because it has been clinically proven to help ease chronic pain and to work in conjunction with my bio-identical hormones.  

What about my husband, who suffered a horrible accident 35 years ago that damaged his right lower leg beyond repair? What about his daily pain levels from his shin bone that stays broken from bone infections?  Why shouldn’t he have quality of life on a daily basis? His leg will never heal and it will never stop causing him pain.

We aren’t taking prescription medications that makes us sit and drool, or knock us out without knowing what’s going on around us. We take medications so we can be alert and live daily life the best that we can while we are here.

No one can imagine a life of chronic pain that will never go away until they live it themselves. We are not talking about pain that comes from getting a scuffed knee or elbow. We aren’t talking about pain that comes and goes like indigestion. We aren’t talking about the pain of creaky joints that comes from getting older, although we have that as well.

Why must those of us who struggle to live a quality life be ridiculed and ruled by government agencies that do not even deal with these issues? Shouldn’t that be decided by our medical doctors who have put in years learning their profession? Who took an oath not to harm us but to help us?

It’s not logical to compare a prescribed pain medicine to heroin or any other illegal drug you can buy on the street.  

We are living a life of “medical necessity” and not one of addiction. We are law abiding citizens that just want quality of life.

Lisa Davis Budzinski is a cancer and stroke survivor who suffers from Central Pain Syndrome.

Lisa is a delegate to the Power of Pain Foundation, Vice President of the Central Pain Syndrome Foundation, and author of "At The End of The Day."

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.

Vitamin D Lowers Inflammation from MS

By Pat Anson, Editor

A new study is adding to the growing body of evidence that Vitamin D supplements can be used to treat multiple sclerosis (MS) and other inflammatory chronic pain conditions.

The pilot study published by Johns Hopkins physicians in the journal Neurology found that taking a high dose of vitamin D3 is safe for people with MS and may help regulate the body’s hyperactive immune response.

“These results are exciting, as vitamin D has the potential to be an inexpensive, safe and convenient treatment for people with MS,” says study author Peter Calabresi, MD, director of the Johns Hopkins Multiple Sclerosis Center and professor of neurology at the Johns Hopkins University School of Medicine. “More research is needed to confirm these findings with larger groups of people and to help us understand the mechanisms for these effects, but the results are promising.”

MS is a chronic and incurable disease which attacks the body’s central nervous system, causing numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain.

Low blood levels of vitamin D – known as the “sunshine vitamin”-- have been linked to an increased risk of developing MS.

People who have MS and low levels of vitamin D are also more likely to have greater disability and more disease activity.

In the Johns Hopkins study, 40 people with relapsing-remitting MS received either 10,400 international units or 800 international units (IU) of vitamin D3 supplements every day for six months. Patients with severe vitamin D deficiency were not included in the study. The current recommended daily allowance of vitamin D3 is 600 IU.

Blood tests at the start of the study, and after three and six months, measured the amount of vitamin D in the blood and the response in the immune system’s T cells, which play a key role in MS.

Participants taking the high dose of vitamin D reached optimal levels of Vitamin D in the blood (40 to 60 ng/ml), while the group taking the low dose did not reach that target. The people taking the high dose also had a reduction in the percentage of inflammatory T cells related to MS severity. The people taking the low dose did not have any noticeable changes in the percentages of their T cell subsets.

“We hope that these changes in inflammatory T cell responses translate to a reduced severity of disease,” says Calabresi. “Other clinical trials are underway to determine if that is the case.”

Another recent study in Neurology by Danish researchers found that MS patients who spent time in the sun every day during the summer as teenagers developed the disease later in life than those who spent their summers indoors. Ultraviolet rays in sunlight are a principal source of Vitamin D, which has a wide range of positive health effects, such as strengthening bones and inhibiting the growth of some cancers.

Low levels of serum vitamin D have also been linked to fibromyalgia. In a study of over 1,800 fibromyalgia patients published in the journal Pain Physician, researchers at National Taiwan University Hospital found a “positive crude association” between chronic widespread pain and hypovitaminosis D, which is caused by poor nutritional intake of Vitamin D, inadequate sunlight or conditions that limit Vitamin D absorption.

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

CDC ‘Not Aware’ of Website Issues

By Pat Anson, Editor

The start of the New Year means the deadline is fast approaching for people to submit their comments about the opioid prescribing guidelines proposed by the Centers for Disease Control and Prevention (CDC). The deadline is January 13th to comment on the draft guidelines, which discourage primary care physicians from prescribing opioids for chronic pain.

So far, nearly 1,500 comments have been received at the regulations.gov website, and while the process appears to have gone smoothly for most users, some have complained to Pain News Network about the website loading slowly, not accepting comments, "internal errors" and other “technical difficulties.”

One couple even sent us a series of screen shots showing some of the problems the website was having around Christmas.

“I have multiple screen shots for days of being told the site was experiencing technical difficulties and to send an email. Another saying due to internal error they were unable to retrieve docket info, etc.,” wrote Jerry and his wife Sharon, who asked that we not use their last name.

The CDC says the website was undergoing maintenance the weekend of December 19-20, but the agency is unaware of any other period when the website was down.

“CDC is not aware of issues with submitting comments via Regulations.gov. People should be able to submit a comment through the docket without any issues. Once submitted, they should receive a receipt confirming the submission. There might be a slight delay in comments appearing online given the holiday,” said CDC spokesperson Courtney Leland in an email to PNN. She urged anyone experiencing a problem to call the Regulations.gov help desk (1-877-378-5457).

The delay in posting comments has contributed to the frustration of some posters, especially those who were already suspicious of the CDC, given the agency’s secrecy and lack of transparency when the guidelines were first drafted.

“My comment wasn't posted on the CDC opioid issue – I’m not surprised,” said David Becker, who submitted a lengthy comment accusing the agency of trying to “subjugate people in pain to forces beyond their control.”

Becker complained to the CDC and his comment appeared on the website the next day.

The CDC says it is not trying to censor or silence anyone – but is reviewing all comments for personal information, inappropriate language and other issues before posting them. That delay causes a discrepancy between the numbers of comments received and the number posted on the website.

 “There were comments pending posting while CDC contacted individuals who had included personal, private information in their comments. CDC contacted the commenters to ensure that they agreed to have their personal information publicly posted. CDC has completed contacting those commenters and their comments have been posted. The only comments currently waiting to post are those that the docket managers need to review and catalog before public posting,” said Leland, adding that no comments had been rejected as inappropriate for posting.

Another issue that has led to frustration is the limit on characters, not words, used in comments. The limit is 5,000 characters, including spaces, something the CDC says it is unable to change, and posters say is too limiting and confusing.

“The site certainly isn’t very (user) friendly is it?” asked Janice Reynolds, a retire nurse and pain sufferer. “I read ‘words’ when it actually said characters.  So even though it looked like I was under the ‘word’ limit it would say I had too many characters.  I finally recognized what it was saying and divided the paper in two (pain patient and pain management nurse) and did them separately.  That worked however it still wouldn’t let me download a file.  It was frustrating.  So it was really operator error with a poor instruction manual.”

Still another issue that has raised concern is efforts by some organizations to get their followers to submit form letters as comments. Physicians for Responsible Opioid Prescribing (PROP), for example, sent a newsletter last week to supporters urging them to submit comments in favor of the guidelines. In his “urgent request” to supporters, PROP founder Andrew Kolodny, MD, even had several suggestions on what to write.

But in its “Tips for Submitting Effective Comments,” the government says that tactic won’t work. It’s not the number of comments that come in, pro or con, but the quality.

“Many in the public mistakenly believe that their submitted form letter constitutes a ‘vote’ regarding the issues concerning them. Although public support or opposition may help guide important public policies, agencies make determinations for a proposed action based on sound reasoning and scientific evidence rather than a majority of votes. A single, well-supported comment may carry more weight than a thousand form letters,” the regulations.gov website states.

The public comment period on the CDC's prescribing guideline continues until January 13th. You can make a comment by clicking here. 

The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

All Things Considered: Except Patients

By Pat Anson, Editor

National Public Radio’s All Things Considered is one of the most respected radio programs in the country, reaching nearly 12 million listeners each week.

So when All Things Considered aired a two-part series this week on the opioid prescribing guidelines being developed by the Centers for Disease Control and Prevention (CDC), many expected an in-depth and balanced report on America’s love-hate relationship with opioids – how a medicine that gives pain relief to millions is also responsible for the deaths of thousands who abuse it.

Host Robert Siegel said the nation was at a “turning point” in its complicated relationship with opioids. The broadcast interviewed pain specialists, a family physician, and various experts who said the CDC guidelines either go too far or are long overdue.

“We have a moral responsibility to address pain and suffering. And we do have a responsibility not to do harm, but you can do harm in either direction,” said Richard Payne, MD, of Duke University.

“The number of deaths is only the tip of the iceberg, that's just indicating the pyramid of problems that lies beneath,” said Jane Ballantyne, MD, President of Physicians for Responsible Opioid Prescribing (PROP).

Completely missing from the report was the voice of pain patients. Many noticed the omission and left comments on NPR’s website.   

“Please consider interviewing real chronic pain patients. Everyone seems to be making decisions about our treatment but no one asks us how these medications work for us,” wrote one pain sufferer.

“Sorry but NPR screwed up majorly on this piece – they had no panel of patients to give their thoughts – considering how terrible pain patients are treated, that would have been a good angle,” wrote Cary Brief.

“The recent public discussion on opiates, which paints all opiate users as addicts or drug-seeking, is not only unhelpful, it is exceedingly harmful to patients like myself who take their medications as prescribed,” said a woman who suffers from chronic back pain.

“I am amazed at my beloved NPR not doing their homework on this,” wrote Kristine Anderson. “You have just labeled yourself another media outlet getting your information from only the CDC (other than Dr. Payne perhaps) and creating feed off of their press releases, timely sent just as the guidelines comments were reopened and soon to close.”

Anderson also wrote she was disappointed that the broadcast included a lengthy interview with Ballantyne, a retired pain specialist who has recently emerged as a controversial figure in the debate over opioids. As Pain News Network has reported, Ballantyne is one of five PROP board members who are advising the CDC and her inclusion in a secret panel of experts is one of the reasons the agency delayed implementing the guidelines and reopened a public comment period.

Critics have said Ballantyne is biased, has a financial conflict of interest, and should be fired from her academic position at the University of Washington School of Medicine for advocating that pain intensity not be treated.

None of that was reported by All Things Considered, which gave Ballantyne a prominent role in the broadcast. Ballantyne told the program that during her lengthy career in pain management she and other doctors were sometimes abused and insulted by “awful” pain patients when they tried to wean them off opiates.

“If you give people opiates, they think you're the best thing since sliced bread. They love you. They just worship the ground you walk on. The moment you suggest that you want to try and get them down on their dose or, worse still, say you can't carry on prescribing - not that I do that myself; I never cut people off; I don't think people should be cut off, but I do try and persuade them to come down on their dose - they are so awful,” Ballantyne said.

“And you can see why people who are not seeped in this stuff - the young primary care physicians just don't know what to make of it. They don't want to be abused. They want to be loved like everybody else does. We go into medicine to try and help people. And when you get abused and, you know, insulted, you can see why it perpetuates itself.”

Ballantyne said patients on high doses of opiates “were absolutely miserable, were not doing well, were medically ill and always had severe pain." It was then that she and her colleagues began to think "the opiate wasn't helping, and maybe it was harming.”

You can listen to Ballantyne in the first part of NPR’s story, by clicking here.

The second part -- an interview with Dr. Wanda Filer, president of the American Academy of Family Physicians -- can be heard by clicking here.