A Pained Life: Help Us Help America

By Carol Levy, Columnist

I had a friend who was diagnosed with lung cancer. We were all afraid for her. Not only because we feared for her life, but because of all the horrors we hear surrounding treatment for cancer.

She had surgery and a part of one lung was removed. When I spoke with her after surgery, I hesitantly flirted around the edges of the question: chemotherapy, radiation, how awful will it be for you?

My worries were unwarranted. Her answer was completely unexpected.

"I don't need anything else,” was her reply. “My doctor said, ‘You had cancer. Now you don't.’”

Wow. What strides they have made against this horrendous disease.

There is no question how feared cancer is, how dreadful the disease is and the possible repercussions -- from the cancer itself or as a result of the terrible treatments used against it.

The federal government throws huge amounts of money at cancer research and new treatments. As they must. Cancer scares everyone. It must be eradicated, if at all possible.

Cancer also costs the economy. Treating cancer in the United States cost nearly $125 billion in 2010 and is projected to reach $156 billion in 2020. The government would be accused of malpractice if they ignored this life and money devouring monster. And they don't. That is one reason my friend had it and then she didn't.

 What is the economic impact of pain? Between $261 and $300 billion annually in healthcare costs alone. Add in lost works days and productivity, and the tab reaches $635 billion.

Estimates vary, but according to the American Academy of Pain Medicine, 76.2 million Americans have chronic pain, compared to 20.8 million with diabetes, 18.7 million with coronary heart disease and stroke, and 1.4 million with cancer. In other words, chronic pain affects more Americans than diabetes, heart disease, stroke and cancer combined.

So why is chronic pain ignored? Why do we continually have to fight for the dollars to fund research and development of new treatments? The National Pain Care Act languished in the U.S. Senate for many years with no action taken. Under the Affordable Care Act (Obamacare), it was finally incorporated as an amendment that calls for more pain education of physicians, and more dollars for pain research and the development of new treatments.

So where are the dollars? Where is the research? Where are the new treatments?

So far, they seem nonexistent. Instead, the one option that many pain sufferers have – opioid medication -- is being taken away. We are the whipping boys of the “opioid epidemic.”

Many of us have been helped by opioid medication. Some are less disabled by pain. Some are helped enough to continue working and pay taxes, reducing our drain on the economy.

This should be celebrated and expanded, by giving us access to medications that provably help, at least until other treatments become available. But instead of assisting us in improving our lives, the government is giving us policies and “guidelines” antithetical to helping the chronic pain community. The consequences of these dreadful policies – higher healthcare costs, more disability, lost quality of life, and suicide -- are being ignored.

Is that because it makes for better headlines when politicians scream about the so-called opioid epidemic?

There is no doubt there is a big problem with the overuse, abuse and illegal use of narcotics. But we are not the bogeyman in this fight. Less than one percent of opioid medication that is legally prescribed falls into the wrong hands.

If they truly wanted to help the country, they would look seriously at the consequences of making us the bad guys. Many of us who were doing better as a result of opioids have been forced to reduce our dose or are no longer able to get a prescription. It’s not saving lives and it’s not preventing addiction. Look at how the overdose numbers keep rising. This is a benefit to no one. Not for us as individuals or to the country as a whole.

Our pain is invisible, but so too are cancer, diabetes, heart disease and many other conditions. Insulin is okay. Statins are okay. Chemotherapy is okay. Opioids are the devil.

The devil, as they say, is in the details. And the details are very clear. Opioids help pain patients. They allow us to help the country. We keep looking for a way in, to make our voices heard. Maybe we should make patriotism our rallying cry. When you hurt us, you hurt the country. Help us help America.

Until the government, DEA, CDC and politicians can find other ways to reduce or even eradicate chronic pain, take us off your list of opiate abusers.

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.

I Am a Casualty of the War on Drugs

By Lorelei Bryan, Guest Columnist

I am a 51 year old wife, mother, grandmother and businesswoman, among other things.  Along with all of those other titles and roles, I am a person who lives with chronic pain.

I do not like the label “chronic pain patient,” as it carries with it more stigma and derogatory implications than ever. 

In 2010, I began to experience extreme pain near my left ear.  Suspecting an ear infection, I went to my primary care physician. After examining me and asking a lot of questions, he said I had no infection and that he suspected this was related to the temporomandibular joint (TMJ) in my jaw. Like most people, I had heard of TMJ and thought it was the result of grinding or clenching my teeth. A visit to my dentist confirmed that there was no evidence of grinding or clenching.  He was at a loss. 

Thus began my two year journey of one oral surgeon after another, one therapy after another, and one failed surgery after another, trying to get this condition resolved. All the while, I battled between the primary care doctor and the surgeons on which of them was going to write the pain medication prescriptions I needed to keep functioning throughout this ordeal.

Finally, after two years and seven surgeries of various types, I was referred to an oral surgeon who specialized in TMJ patients with advanced and rare conditions.  A cat scan revealed that arthritis had destroyed almost all of the bone structure in my jaw.  I had to have two more major surgeries; one to remove what was left of the diseased bone and the second to install custom made titanium jaw parts.  

LORELEI BRYAN

The surgeon warned me that the procedures would restore function to my jaw (I could not open my mouth more than a few millimeters), but that I may be left with chronic pain.  He was right on both counts. The combination of the multiple surgeries, scar tissue, damage to the surrounding structure, and permanent nerve damage left me with severe chronic pain from trigeminal neuralgia that will never improve. 

During the final two surgeries, I was working with a pain management specialist who knew my surgeon.  All was well, as they communicated regularly and I was receiving pain medication that allowed me to manage my pain to the point of having a relatively normal life, although not completely pain free. 

In 2014, 18 months post replacement surgery. I received a letter from my pain management doctor explaining that he was no longer treating pain patients. No additional prescriptions would be given to any patient and no referrals to other doctors or pain clinics would be provided.  Just like that, everyone he treated for pain was dropped. Of course, I panicked, as I’m sure many of his other patients did. Being dropped by a doctor for no reason and with no support for transitioning to another provider feels like betrayal.

I sought help from my primary care provider and, fortunately, he said he could treat my pain himself. I was very relieved and grateful to him.  For three years he and I worked together to manage my chronic pain, including the trigeminal neuralgia that the surgeries caused. We were able to use a combination of Tegretol and oxycodone that reduced my need for oxycodone by 20mg per day, as compared to the dose I was on with the pain management specialist.

Never before had my pain been managed to the point it was.  He and my pharmacist know each other well, and the three of us worked together to manage my pain.   

The War on Drugs Targets the Wrong People

Fast forward to June 2017.  I go in for my every other month appointment with my primary care provider. He does his exam, we talk about my other medical issues, and then he gets a grave look on his face.  “I can’t write the oxycodone for you anymore,” he says. 

I am thrown.  He explains that the state has instituted strict limits on who can be prescribed narcotic pain medication and very strict limits on the amounts. I couldn’t breathe. Thoughts of what life would be like without having my pain effectively managed ran through my head -- reduced job performance, reduced job attendance, possible job loss, checking out of the lives of my children and grandchildren, suffering and crying all day like I used to. 

When I gained a little composure, I said, “We are talking about my quality of life here. I know why this is happening. This so called ‘war on drugs’ is creating a war on the wrong people.” 

My doctor agreed that I am a model pain management patient, a “poster child” for the appropriate use of narcotic pain medication. I see only him. I use only one pharmacy and he knows the pharmacist personally. I take the medication according to directions. I do not doctor shop. I do not ask for early refills.  I follow all the rules and still I have to suffer, so that a bunch of bureaucrats who have no right getting involved in what my healthcare provider deems appropriate for me, so they can pat each other on the back and congratulate each other for “striking a blow in the opioid crisis.”  

When I put it that way, the doctor agreed that I was a prime example of a responsible patient who needs this medication and is not a high risk. He agreed to continue writing the narcotic pain medication prescriptions, but explained that new state laws meant we had to almost cut my dose in half. 

I am now trying to manage on much less medication. The increased pain level makes it difficult to concentrate at work. It has made me withdraw from my husband. And it has impacted my ability to be the mother and grandmother I should be.

These bureaucrats and politicians are causing needless suffering for thousands of people in pain, while doing virtually nothing to stem the heroin overdoses that are the prevailing reason for the opioid crisis in the first place.

Is there a serious issue with abuse and addiction to narcotic pain medication?  Of course there is, and something should absolutely be done to address it.  But taking away medication needed by people in chronic pain is not the answer.  Limiting or denying medication to legitimate patients who need it to live and function with any quality of life only creates another crisis. More and more people turn to illegal drugs or, worse yet, commit suicide because their medication has been taken from them and they cannot endure without it.

My question is this: where is our voice?  For all of the politicians and celebrities speaking out on the war on drugs, who is speaking out on the other side of this?  If someone of consequence and influence does not speak out for people in pain, these new laws and limits will create just another silent epidemic and the war on drugs will take more lives than ever.

Lorelei Bryan lives in Virginia.

The Virginia Board of Medicine recently adopted emergency regulations that require doctors who prescribe more than 120mg morphine equivalent (MME/day) to a patient to document the justification for the dose or to refer or consult with a pain management specialist. It does not expressly forbid doctors from prescribing more than 120 MME/day.

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.

Can Marijuana Improve Your Sex Life?

By Roger Chriss, Columnist

A new study by researchers at Stanford University, published in the Journal of Sexual Medicine, shows that marijuana use is associated with greater sexual frequency in both men and women. There has been a lot of enthusiasm about the findings, but relatively little understanding of what the research actually says.

Marijuana has intriguing medical potential, from symptom relief in terminal cancer patients to pain management in chronic conditions. And the possibility that it may improve sexual function is enticing in particular for people with health problems. Thus, it’s important to understand what any new results are really saying. So let’s use this paper as a case study on how to read a research paper.

We start with the study methodology. Because the gold-standard of a double-blind placebo-controlled randomized prospective trial is not possible with marijuana, the authors had to engage in data mining, the process of using an existing data set to ask new questions.

For a data source, the study uses the National Survey of Family Growth (NSFG), a large database assembled by the CDC. The study results were drawn from an analysis of 28,176 women (average age = 29.9 years) and 22,943 men (average age = 29.5).

It is important not to be impressed by these large numbers. Increasing a sample size beyond a certain point offers no additional reliability, and it may create more problems with confounding variables and hidden biases. Because the authors did not assemble this data themselves, there was no way for them to address these issues.

A sanity check of the data is the next step. This study looks at sexual frequency at various levels of marijuana use. A check of the International Encyclopedia of Human Sexuality shows that “on average, men and women engage in sexual intercourse approximately six times per month.”

This is consistent with the Stanford study findings, but with a caveat: recall of the previous month’s sexual activity or marijuana use may be imperfect. Some researchers try to get around this problem by having participants keep written logs or by using apps, but this study did not.

It is also important to keep in mind that the study variable of sexual frequency is an imperfect number. You cannot have sex 0.73 times!  Any change in sexual frequency has to occur in increments of one per unit time. In this study, the unit time is a 4-week period. The increase reported in the study represents the smallest possible increase, or one additional sexual event. The authors found that regular marijuana use was associated with one more sexual event every four weeks.

The study mentions the use of the NSFG data as a limitation. The authors note that “survey responses were self-reported and represent participants only at a specific point in time.” But there is a deeper issue here. As noted above, the data set may contain flaws, biases, or other issues beyond the control or even the awareness of the authors. Formally speaking, randomness is lost. In election polls, for instance, pollsters follow strict protocols to ensure randomness because doing so makes for more reliable results.

In practice, large data sets often contain many associations because life is complicated and even seemingly simple activities like sex are subject to a variety of influences. So posing questions to large data sets requires caution, or as statisticians sometimes say, “give me a large enough data set and I can prove anything.”

The Stanford study’s conclusion is that a “positive association between marijuana use and sexual frequency is seen in men and women across all demographic groups.”

But in an interview with The Washington Post, the authors qualify that by noting that the study “doesn't say if you smoke more marijuana, you'll have more sex,” appropriately warning that correlation is not causation.

Spurious Correlations

But the mantra of “correlation does not imply causation” is simplistic. In reality, association does not even imply direction. It is equally reasonable here to say that greater sexual frequency is associated with increased marijuana use. But changing the word order alters the implication.

The second problem is that the association may be meaningless, an artifact of our data-rich world. Such spurious correlations can even be a source of entertainment. For instance, coital frequency may be correlated with living in an even-numbered zip code or marijuana use may be associated with banana slug activity.

Not to make light of overdoses, but there is even a spurious correlation between deaths caused by opioids and the price of potato chips:

SOURCE: TYLERVIGEN.COM

These associations could be tested, but a positive result would probably not get the kind of media attention the Stanford study is receiving.

Moreover, sexual activity is influenced by a wide range of factors. It is possible that regular marijuana users have a lifestyle more conducive to sex, making lifestyle a lurking variable that affects both sexual frequency and marijuana use. Or it may be that daily marijuana users have more disposable income, more time to enjoy the effects of marijuana, and a more drug-tolerant work situation. In this case, marijuana use would act as a proxy for other potentially causal factors that influence coital frequency.

Because these issues are always found in large data sets, the potential for finding meaningless associations is ever-present. Or as statisticians say, “if you torture the data enough, you can get it to confess to anything.”

Thus, a study of this nature has inherent limitations that mean its results must be interpreted with caution. As the authors note in their conclusion, “the effects of marijuana use on sexual function warrant further study.”

So our final task is to consider what would constitute further study. Obviously, this result needs to be confirmed, ideally with a prospective study that controls for confounders. If the result is reproduced, then the hard work of identifying the causes begins. Once identified and confirmed through human testing, then and only then can we say that marijuana increases sexual frequency. For now the best we can do is read such studies with care and caution.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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

How Rx Opioids Helped Me Work Again

By Kate Nicholson, Guest Columnist

I recently told 2,200 intimate listeners during a TED Talk how a surgical error left me in severe pain, unable to sit or stand, and largely bedridden for almost twenty years.

I also explained that with appropriate pain management, including treatment with opioids, I continued working as a high-level federal civil rights prosecutor despite my physical limitations. I won important arguments in federal court, arguing from a folding lawn chair. I drafted the current regulations under the Americans with Disabilities Act (ADA), coordinated with the White House, and supervised thousands of cases by hundreds of attorneys across the country from a computer screen and well-camouflaged bed.

And when my pain finally improved, I stopped taking opioids.

A part of me was not eager to go public as someone who used opioids, for the same reasons that I was initially reluctant to take opioids for pain. Opioids carry a stigma, one that is only increasing today in an era of opioid abuse.

The increase in prosecutions and the oversight of physicians, and the difficulty people in pain today experience in getting appropriate pain medication motivated me to tell my story.   

My story of pain began 23 years ago. I was working at my desk in the Civil Rights Division of the U.S. Justice Department, putting the finishing touches on a document due to court, when my back started to burn. It felt like acid eating my spine. My muscles seized and threw me from my chair.  As I curled on the floor, my body seared with pain.

Over the coming days and weeks, the pain only intensified. Any postural compression on my spine caused electrical and burning sensations to escalate like an alarm that grows louder and louder.

At the age of 30, just a few years out of Harvard law school, I could barely stand and sitting was impossible. So, I began to conduct my life lying down. For a while, I was able to commute, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. Then for many, many years, I was entirely bedridden.

Two things allowed me to maintain a life under these circumstances. The first is that I happened to be working in one of the few jobs that would accommodate me. When my pain began, I was enforcing the ADA, a civil rights law that protects the rights of individuals with everything from multiple sclerosis to cancer to HIV disease.

The second and more critical factor was my access to good medical care. My pain began in the 1990s, when the pendulum on pain swung decidedly in the opposite direction of where it is today.  I had access to the best doctors and to treatment at a pain management clinic. My physicians tried all sorts of treatments, from lidocaine infusions and directed injections, to nerve ablations and a surgery to separate nerves from adhesions. Nothing restored my mobility or diminished the pain.

Early on, I refused to take opioids.  I was worried about addiction and stigma.  When my doctors initially approached me about taking opioids for pain, I was, at first, devastated. I felt like they were giving up, that I was being put out to pasture.  But I had exhausted my available treatment options, so I relented and underwent psychological screening to determine if opioids were appropriate. 

As soon as I took opioids, I improved. I wasn’t foggy or especially euphoric. In fact, the opposite happened, space opened in my mind and I could work again.  I also never developed a tolerance, requiring more medication for the same level of pain relief. 

Opioids did not heal me. Integrative treatment over a long period of time did.  But opioids gave me a life until I could find my way to healing. Importantly, they allowed me to continue to work.  

I understand that opioids are complicated. People are different. I also recognize that as a public health matter, the interests of treatment must be balanced against the potential for abuse.  But today we have no such balance: our media attention and public policy focus singularly on abuse.

Serious physical pain needs to figure into the conversation, especially since severe or persistent pain affects 25 times more Americans than opioid abuse.

I worry that we are throwing out the baby with the bath water. By focusing on a single substance, we are not addressing the root causes of addiction.  By placing undue pressure on physicians and the doctor-patient relationship we abandon people in severe pain, many of whom could contribute and lead productive lives, to their suffering.

Kate Nicholson lives in Colorado. She served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court. 

Kate is currently writing a book about her personal experiences with severe chronic pain. She can be reached through her website at www.katemnicholson.com. 

You can watch Kate's TED Talk below:

Should You Tell an Employer About Your Chronic Pain?

By Lana Barhum, Columnist

Telling your boss or a potential employer about your chronic pain condition can be slippery slope. 

If you disclose it, you may wind up dealing with judgments and misguided attitudes from supervisors and coworkers about the extent of your chronic pain. On the other hand, if you don’t disclose it, you may miss out on accommodations you need and are entitled to.

There is always going to be risk when you disclose. And it is hard to know whether an employer will be accommodating or treat you unfairly.   

You do have rights as an employee and a person living with chronic pain. You should know what they are before you decide whether to disclose.

You Do Not Have to Be Visibly Disabled

Many people who live with chronic pain don’t consider themselves “disabled.”  Even so, they may still qualify for accommodations under the federal Americans with Disabilities Act (ADA).

The ADA defines a person with disability as someone who has “a physical or mental impairment” that significantly alters one or more major life activities. You may have trouble sitting, standing or walking, for example. The key is whether the limitation is substantial

It is important to note the ADA’s definition is a legal one, not medical. And because it is a legal definition, the meaning of disability is different than it would be under other laws. The ADA doesn’t list all the covered conditions, which gives some flexibility to people living with  non-specific chronic pain; which is pain that lasts longer than three months, but has no specific medical cause.

For example, you could have joint pain from rheumatoid arthritis, while someone else’s back pain may not be related to a specific event or health condition. It doesn’t make the other person’s pain any less valid than yours or diminish their need for job accommodations. Back pain would still be considered an impairment.

You Do Not Have to Disclose When Job Hunting

The ADA does not require you to disclose your medical conditions when interviewing and applying for jobs.  However, the employer is allowed to ask questions about whether there is anything that could prevent you from doing the job required. 

They may inquire about medical conditions and request a medical exam, but only if they are doing this with all their new hires and being in good physical health is a requirement to perform the job.

You Do Not Have Disclose When You Start a New Job

If you didn’t disclose your condition while interviewing or when you started the job, you can still ask for accommodations later.  You have the right to ask when the need arises.

If you request an accommodation, an employer is allowed to ask for a reasonable corroboration of your need for one,  such as a doctor’s letter. You can disclose what you want about your medical condition and it doesn’t have to be everything.

You Can Disclose on Your Own Timetable

You are under no legal obligation to tell anybody at your job about your chronic pain.  Your employer also does not have any legal right to request this information from you; unless it involves health and safety obligations they are required to meet.  

It is your decision when and if you want to tell your employer, ask for accommodations and/or share with your co-workers.  You never have to let anyone know if you don’t want to.

Should You Disclose?

If you believe chronic pain affects your ability to do your job, think about the ways it does and what solutions there might be.  For example, are you leaving work often for medical appointments? Would a flexible schedule or working from home one day a week help your situation?

Or could you benefit from other tools that make it easier to work, such as an ergonomic workstation?  Keyboards, mice, office chairs, standing desks and other ergonomically designed tools are increasingly being used in the workplace because they reduce the risk of back pain and other musculoskeletal disorders. 

A good resource where you can find examples of accommodations for specific medical conditions is the Job Accommodation Network.

Things May Not Go as You Plan

If you choose to disclose, you may not get the response you want. Your employer is prohibited by law from terminating you based on your need for accommodation.  However, they might find other ways to get rid of you or retaliate, such as changing your work schedule or denying you a promotion.

They’re taking a big risk if they do. Any form of retaliation when someone asserts their rights is illegal under the ADA. The question will be -- can you prove it? Always keep good records and notes about your communications with an employer about your medical conditions.

Your employer can deny your request for a specific accommodation, provided they are willing to accommodate you in other ways.  For example, if your office space is cold and your joints hurt more in that environment, they could deny your request for a space heater due to fire concerns, but offer to move you to a warmer section of the office as an alternative.

The good news is that your employer cannot flat out deny your request for accommodation. They are required to make a good faith effort to accommodate you in ways that make it easier to do your job with chronic pain.

Good Employers Want to Keep Good Employees

There are no easy answers as to whether you should or shouldn’t disclose your chronic pain to your employer. You should do what works best for you and your workplace. A good employer will be motivated to keep you and will do everything to accommodate you. Others may not.

Make sure you are continually updating your resume and your skill-set should you need to look for a new job.

I have been fortunate to work for companies that have accommodated my needs as a person with chronic pain.  They have understood my need for a flexible work schedule, an ergonomic workstation, and to be able to leave work early or show up late after medical appointments. They’ve made it easier for me to be successful at my job.

I know the idea of disclosure can make you nervous, but it may help you get the support necessary to be a better employee.  From my experience, most employers are accommodating and want to keep valuable employees. They know that the best employees are found in comfortable workplaces.

Lana Barhum is a medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

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

Why We Should Keep Those Letters Coming

By Janice Reynolds, Guest Columnist

I have been a pain management and oncology nurse for over 20 years, and have long been a patient advocate.

Eight years ago, I joined the ranks of those living with a chronic pain syndrome (persistent post craniotomy pain), and in the last year spent an ungodly amount of time in acute pain.

As a patient advocate, I have written emails and letters for over 15 years to politicians, newspapers and online media, columnists, and book authors -- usually with poor results. But it is that one letter out of a dozen that makes it worthwhile.

My hometown newspaper, the Portland Press Herald, has refused to print any of my letters or editorials for several years now. I know they had good results when they did, because I would receive letters and calls from individuals thanking me or asking me questions.

Letters to the editor that were published by the Press Herald in response to my letters tended to be on the malicious side. Politicians were defensive or accused me of being wrong. 

I have had responses from two authors. One actually thanked me and said his source was obviously misinformed.  The other was on the nasty side. Her son is an orthopedic surgeon in the Army, and she said he knows what he is talking about – that our military and veterans are nearly all becoming addicts because of their pain treatment! She was a little more conciliatory when I wrote her back, but still didn’t understand why what she wrote was misleading and dangerous, which I found even more scary.

I still owe Stephen King a letter for the misinformation he presented on pain management, addiction and how opioids work in “Under the Dome,” which I recently re-read. Even though the book is fiction, people will believe what they read.

It was my latest email which brings me to writing this. Recently there was a political cartoon which really upset me.  It showed a bottle labeled “opioids” pouring pills onto the U.S. Capitol and nearly covering it.

The cartoon is based on a recent story by 60 Minutes and The Washington Post that was critical of a law that limited the ability of the DEA to go after pharmaceutical distributors.

I looked up the cartoonist – R.J. Matson -- on the Internet and sent him an email.  It basically told the other side of the story and how the current situation is harming not only people in pain but those in the future as well. 

I did use the term “witch hunt” and my analogy of the four pillars of the so-called opioid epidemic: McCarthyism, Fear-mongering, Yellow Journalism, and Bigotry towards People in Pain with a foundation built on Opiophobia.

I received a reply back almost immediately.

“Far from a witch hunt, the United States Congress, at the behest of lobbyists for the pharmaceutical industry, passed legislation preventing the DEA from monitoring opioid abuse in the medical profession and taking action against that abuse,” Matson wrote to me. “The prevention of responsible oversight of the pharmaceutical industry and doctors who profit from overprescribing pain medication is the subject here.

“Do you applaud the Congress taking away the ability of the DEA to do its job?”

Actually, if this happens, I do applaud Congress.  The DEA’s job is to prevent the illicit use of drugs, not to harass providers and patients or make medical decisions for them.

One of the key words in Matson’s response is “overprescribing.” There is no evidence to support this word and anyone who uses it should be deeply ashamed.  You are saying the provider should only prescribe “X” amount to patients and any amount more than that is too much.  If you mean they are prescribing inappropriately, then you should also be ashamed. This is a judgment call between the patient and provider. What knowledge or expertise do you have to say otherwise?

As for the reasons for the law, I seriously doubt it was “at the behest of lobbyists for the pharmaceutical industry.” Pharmaceutical companies are responsible for many wrongs -- like direct to consumer advertising -- but pushing addiction is not one of them.  If Pharma was trying to "behest" anything, it has more to do with the prevention of widespread terrorism the DEA has inflicted on physicians and their patients. 

This is why I believe it is tremendously important to write letters. You may get a response like mine, but at least you got a dialogue going. Here are other reasons: 

• Telling “our” story may help weaken the stance of non-compassion.
• Review facts we know are wrong and point out why.
• Review facts we know are true and why we know this.
• Explain why opioid addiction is a fictional epidemic or has little relationship to prescribed opioids.
• Call people on the use of fictional terminology like “overprescribing." I once read an AP story where the reporter actually wrote, “everyone knows people become addicted by taking opioids for pain.”
• Remind everyone they are only one accident, one surgery, one illness or one disease away from severe acute pain that may become chronic if not treated correctly.  
• Remind everyone of the ethical and moral issues raised by ignoring and undertreating pain.  Medical professionals are required to know them. Should media and politicians be held to lesser standards?

A single letter may cause someone to think and put a crack in the wall of propaganda.  Many more letters may be powerful enough to break that wall down. 

Letters and emails are our strength and hope.  Changing the current situation may seem overwhelming, but to borrow a phrase from a famous World War II poster: “We Can Do It.” 

Janice Reynolds is a retired nurse who specialized in pain management, oncology and palliative care. She has lectured across the country on pain and co-authored several articles in peer reviewed medical journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them.

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

4 Infusions That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist

I am so excited to finally be to my favorite letter – "I" -- in my series on alternative pain treatments. The “I” stands for infusions.

There are many different types of infusions, but the four I will cover are ketamine, immunoglobulins, lidocaine and stem cells. I have done 3 of the 4, and one of my good friends has done the fourth with great success. So I feel comfortable sharing what I know about infusions based on my personal health journey.

Ketamine

I was afraid of ketamine when I first heard about it. Ketamine was created in 1962, when it was first synthesized by scientist Calvin Stevens at the Parke Davis Laboratories. Ketamine is a potent anesthetic that blocks pain by acting as a N-methyl-D-aspartate (NMDA) receptor antagonist. It can also reset glia nerve cells in the spine and brain.

Ketamine is not appropriate for everyone. For me, I saw it as a chance to reverse the Reflex Sympathetic Dystrophy (RSD) that I had been living with since 2002.  My excitement was great, along with my family’s. My regular treating doctors were not so optimistic about ketamine, but were not discouraging it either.

I began receiving ketamine infusions in 2009. They put me into remission and I continue with booster therapy as needed. I still have flares, but ketamine got me through the biggest challenges of living with RSD. Here is a video of me after my initial infusion treatments, which many find motivational.

Before I started getting ketamine infusions, they wanted me off opioids completely so that my nervous system would reboot better. Research showed that ketamine patients on opioids were not getting the same good results as people who stopped taking them. Since then, I have also learned that opioids also set off glia cells, which is not a good thing for nerve pain patients.

Immunoglobulins

Intravenous Immunoglobulin – known as IVIg --  is used to treat various autoimmune, infectious and idiopathic diseases. One of my best friends, who has multifocal motor neuropathy, uses it to stay functional.

I have not had IVIg yet, but if ketamine didn’t work for me, I would give it a try, insurance permitting. The cost per treatment is between $5,000 and $10,000, so for many it is not an option.

If you have the cash, the FDA has approved IVIg for graft disease and idiopathic thrombocytopenic purpura (ITP). It is also used to treat patients with Kawasaki disease, Guillain-Barre syndrome, and polymyositis/dermatomyositis. I know a number of people who have used it for RSD.

One of the complaints I have heard from friends who use IVIg is that it takes time before your feel any benefits – sometimes days or weeks. If it is a viable treatment for you, there should be some changes in your symptoms and pain levels within 4 weeks.

However, some people do not respond to IVIg and it is very expensive to try just to see what happens. The cost is high because immunoglobulin products come from the pooled human plasma of a thousand or more blood donors, who have to go through an extraction process themselves before it can be processed and ready for use in infusions.

Stem Cells

Stem cell research could pave the way for an entirely new approach to chronic pain that reduces the current reliance on opioids and other analgesics.

I tried two rounds of stem cell infusions for gastroparesis, intestinal ischemia, heart valve dysfunction, cardiac ischemia, and temporomandibular joint disorder (TMJD).

The infusions reversed my gastrointestinal issues within 24 hours and my heart issues in 7 days, but it took longer for my TMJD to feel any relief. I did get some, just not as much as the other areas of my body. I also got improved function in my ovaries, with an increase in estrogen production I did not have before stem cell therapy.

The providers I worked with said it would take 6 to 8 rounds of stem cell infusions to help my nerve pain. I don’t have the money for that, so I stopped after two treatments.

Stem cell studies I have seen show great promise for multiple sclerosis patients, and I will be watching closely to see if it works for RSD and other neuro-autoimmune diseases. Stem cells could also be used as a tool to reverse opioid tolerance and opioid-induced hyperalgesia, two problematic side effects of opioid therapy.

Lidocaine

Although my providers told me that lidocaine infusions are practically pain free, I can tell you they are not. The lidocaine infusions I was given were in conjunction with my stem cell therapy. I felt everything and came away feeling that lidocaine was not a good option for me.

My step sister did have good results from her 7-day infusions of lidocaine, so it goes to show that you have to check to see what works best for you.

Lidocaine is an amide anesthetic and has a wide range of mechanisms of action. Research has shown that lidocaine, when given in a low dose intravenous infusion, has successfully provided pain relief for several chronic pain conditions that have failed other treatment modalities. A recent study in Pain Medicine found that lidocaine provided pain relief to 41 percent of patients, most of whom had neuropathic pain. 

According to providers at Stanford University, the success of lidocaine infusion is dependent on the specific cause of your pain. Some patients report immediate and long lasting pain relief, while others say relief came slowly and only lasted while the medication is being infused. Some patients also report unpleasant side effects.

The only adverse reaction I had – besides the fact it didn’t work for me – is that the infusion itself was extremely painful. Physicians have no way of knowing how you’ll react until you try it. By the time I was begging for help during the infusion, it was too late.

PNN columnist Crystal Lindell has been getting lidocaine infusions and they’ve helped Crystal reduce her use of painkillers. A recent study in Pain Medicine found that lidocaine provided long-lasting pain relief in 41 percent of patients, most of whom had neuropathic pain. 

I would be glad to share more of my experiences with infusions for anyone who has questions from the patient perspective. I would also love to hear your stories about infusions and whether they worked for you. 

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.

Opioid Limits: Means, Medians or Madness?

By Roger Chriss, Columnist

CVS recently announced it would impose a 7-day limit on opioid prescriptions for short-term acute pain for customers in its pharmacy benefit management program.  A pharmaceutical industry trade group also supports a 7-day limit and so does the U.S. Pain Foundation, a patient advocacy group.

Maine, New Jersey, Massachusetts and other states are also limiting prescriptions to a week or less, justifying the time frame by saying that’s what patients need on average.

But this represents a misunderstanding of how statistics work and ignores emerging research about opioid analgesia in the world of acute pain care.

In statistics, we have three values of fundamental importance: the mean, median, and variance.

The mean, also known as the “arithmetic mean,” is the sum of a collection of numbers divided by the number of numbers in the collection. The average height or weight of a group of people is the mean.

The median is the “middle value” of a data set that is ordered from lowest to highest. The mean is found in “median income” or “median price of a new home.” Importantly, the mean and median are not necessarily the same. In the set of numbers 2, 3, 3, 5, 7, 17 and 313, the median value is 5, but the mean value is 50.

The variance is the tendency of a set of numbers to cluster around the mean, or how spread out the numbers are. We know from experience that the height of adults is closely clustered around average height: Most people are over five feet tall and under seven feet tall. No one is 2 inches or 20 feet tall. But variance can also be significant, as is the case with annual income, home prices or family size.

The significance of these three values cannot be understated. In his essay “The Mean Isn’t the Message,” biologist Stephan J. Gould explains that a “median mortality of eight months” does not mean that a person will probably be dead in eight months. Some people, including Gould himself, live many times more than the median survival time for a disease. 

So when talking about opioid analgesia for acute pain, we cannot rely on just an “average” value. Physicians know this, but legislators, corporations and even some patient advocates do not seem to.

JAMA Surgery recently reported on the post-surgical acute pain needs of over 200,000 patients who had one of eight common surgical procedures. The results showed median values from 4 days for an appendectomy or gallbladder surgery to 7 days for a discectomy.  

The authors then used these values and the variance to calculate the range of time a patient would typically need opioids for acute pain after surgery:

• 4 to 9 days for general surgery procedures
• 4 to 13 days for women's health procedures
• 6 to 15 days for musculoskeletal procedures

In other words, there is substantial variance, with the optimal length extending to as much as two weeks. And there is no way to know ahead of time where in this range an individual will fall.

To address this uncertainty, the Opioid Prescribing Recommendations for Surgery were developed at the University of Michigan. They list the recommended numbers of tablets of hydrocodone, codeine, tramadol, or oxycodone for a range of common surgical procedures, including laparoscopic cholecystectomy, open colectomy, and several types of biopsy.

This resource gives amounts that “represent the actual maximum opioid use reported by three-quarters of actual surgery patients.” Those amounts range from 10 to 40 pills, depending on the procedure, noting that “prescribers are encouraged to use their best judgment.”

The Opioid Prescribing Recommendations for Surgery also advise recovering unused pills to reduce the risk of diversion, which is a much more sensible policy than forcing people recovering from trauma or surgery to seek refills if they happen not to fit a mandated average.

In sum, the medical profession is offering evidence-based recommendations for pain management that include not just a simplistic mean, but the real-world variance found in individuals. This approach is likely to provide better results than blanket policies geared toward a statistical mean that does not capture vital features of medical care.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

Why Human Suffering Should Bother You

By Margaret Aranda, MD, Columnist

Patients go to doctors when they have pain and doctors can give them opioid medication to relieve that pain. That should not bother you, because it is a decision made between the physician and the patient.

No doctor has the right to strip a patient of dignity by minimizing or downplaying their pain. We can't become indifferent to the denial of pain, because pain is real. Pain hurts.

A recent column in The Conversation by Dr. Andrew Kolodny bothers me because of two sentences:

"They (opioids) are also helpful when used for a couple of days after major surgery or a serious accident. Unfortunately, the bulk of the opioid prescriptions in the U.S. are for common conditions, like back pain," wrote Kolodny, who is a psychiatrist, not a pain management doctor.

Let’s look at the different ways that Dr. Kolodny is minimizing pain:

Postoperative Pain: A large study recently found that long-term opioid use after surgery is rare. Yet some patients are now being denied opioids after major surgery because of fears they might become addicted. Patients should ask questions about how their postop pain will be treated before surgery and get another surgeon if no opioids are to be offered. Patients do not have to allow a surgeon to minimize their pain.

Trauma:  Serious accidents cause severe trauma. Severe trauma can take months, years or decades to alleviate, leaving patients with chronic pain through no fault of their own. Many are burned, disfigured, scarred, disabled, have a pain syndrome, use a wheelchair, and go on disability or Medicare. 

We cannot allow ourselves to minimize any degree of pain that leads to suffering, less zest for living, and lower quality of life.

Back Pain: Millions of people have low back pain and the added mental health stress that often comes with it, which costs the U.S. economy $100-200 billion in lost workdays and productivity annually. Don't minimize their pain, either!

Treating Pain:  No doctor who witnesses a patient suffering in an emergency room, operating room or intensive care unit should minimize their pain. I've worked in all three as a board certified anesthesiologist and intensive care unit doctor, and am a witness to how an Ivy League university, private clinic, free clinic, county hospital, women's hospital, and Veterans Administration hospitals treat severe pain that may never, ever get better. I'm also a witness as a rebel patient who was offered acetaminophen and ibuprofen for my postop pain.

Physician judgment: Many patients with chronic pain are disabled and legally protected from discrimination. They have failed other therapies and deserve opioid medication for quality of life. They are not bad people, and they have not done anything wrong. Nevertheless, they are often treated like "today's lepers," as Dr. Thomas Kline says. So don't minimize their pain.

Patient Perspective: While on opioids, many chronic pain patients can get out of bed, work a job and keep their families together. They aren't addicts, do not sell their pills, steal money from others to get more, are not estranged from their families for a “drug problem,” and have never had naloxone used on them.

If they are lucky enough to still get an opioid prescription, many are being treated like criminals with rigors that do not stand on evidence-based medicine. They are forced to sign pain contracts, undergo drug tests, and then deal with pharmacy restrictions. Even with pills in hand, it is often not enough. There is an epidemic of undertreated chronic pain, so don't minimize the patient.

Patient Outcome: Unilateral withdrawal or sudden tapering of opioid therapy leads to patient suffering, sleep loss and decreased quality of life. A patient can become bedridden, depressed, and some have committed suicide! It all starts with non-validation of pain.

The Doctor's Oath

No doctor has a right to label, stigmatize, minimize or abandon a patient, much less a patient in pain. To stay clear of this, every medical student is taught to preserve patient dignity and autonomy. Nevertheless, patients are being withdrawn from opioid therapy all over America today, and it is being done by doctors who minimize pain, break the physician-patient bond, and dishonor the Hippocratic Oath.

We've known for over 150 years that doctors commit suicide twice as often as other professions. I think the current situation truly bothers most compassionate doctors, who will be struggling even more in the years to come with physician burnout syndrome. We could see even more suicides by medical students and physicians. 

Doctors are supposed to save lives, and it is just as important to save quality of life. Without quality of life, it is entirely human to have moments when death seems to be the only option out of a life of suffering. Doctors need to keep patients away from having suicidal thoughts, especially if their illness is something that modern medicine can take care of and is severely undertreated, like pain.

It is important to the public in general, and to patients who are disabled in particular, that everyone understands that there are doctors who work night and day for patients who are in pain. We are passionate about it because doctors are healers and no one is ever going to change the meaning of being a real doctor.

I was reminded of this recently when I saw the revised version of the Hippocratic Oath by the World Medical Association. Two important sentences depict how doctors should be responding to pain and their patients:

“I WILL RESPECT the autonomy and dignity of my patient."

"I WILL NOT USE my medical knowledge to violate human rights and civil liberties, even under threat."

When we minimize pain, we minimize the patient. When we minimize the patient, the patient dies.

So go ahead and let human suffering bother you. It proves that you still have empathy and compassion. 

Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

Margaret is a board member of the Invisible Disabilities Association. She has authored six books, the most recent is The Rebel Patient: Fight for Your Diagnosis. You can follow Margaret’s expert social media advice on Twitter, Google +, Blogspot, Wordpress. and LinkedIn.

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 is Opioid Use Disorder?

By Rochelle Odell, Columnist

You’ve probably heard or seen the phrase “Opioid Use Disorder.”  It’s a broad term currently being used to describe not only opioid addiction, but patterns of behavior that might be a sign of addiction or could lead to it.

If that sounds like they’re putting the cart before the horse, it’s because they are.

In order to understand Opioid Use Disorder, one must understand the government's stance on opioids. The National Institute on Drug Abuse – which is part of the National Institutes of Health (NIH) – lays it out in a recently revised statement on the opioid crisis:

“Every day, more than 90 Americans die after overdosing on opioids. The misuse of and addiction to opioids--including prescription pain relievers, heroin and synthetic opioids such as fentanyl--is a serious national crisis that affects public health as well as social and economic welfare."

Notice how they lump prescription pain relievers in with heroin and illicit fentanyl?  The more I research, the more I find this common thread of illogical thinking. The government consistently lumps pain medication in with illicit drugs.

Here’s another example from the NIH: 

“In 2015, more than 33,000 Americans died as a result of an opioid overdose, including prescription opioids, heroin, and illicitly manufactured fentanyl, a powerful synthetic opioid.

That same year, an estimated 2 million people in the United States suffered from substance use disorders related to prescription opioid pain relievers, and 591,000 suffered from a heroin use disorder.”

Substance use disorders “related” to pain relievers? Heroin use disorder? That got me wondering how many drug “disorders” there are.

According to the Substance Abuse and Mental Health Services Administration (SAMSHA), there are six major substance use disorders. Nearly 93,000,000 Americans have a substance use disorder of some kind:

1) Alcohol Use Disorder (AUD): About 17 million Americans have AUD. According to the CDC, alcohol causes 88,000 deaths a year. 

2) Tobacco Use Disorder: Nearly 67 million Americans use tobacco. According to the CDC, cigarette smoking causes more than 480,000 deaths a year.

3) Cannabis Use Disorder: Over 4 million Americans meet the criteria for a substance use disorder based on their marijuana use. No estimate is provided on the number of deaths caused by marijuana, if any.

4) Stimulant Use Disorder:  This covers a wide range of stimulant drugs that are sometimes used to treat obesity, attention deficit hyperactivity and depression. The most commonly abused stimulants are amphetamine, methamphetamine and cocaine. Nearly 2 million Americans have a stimulant use disorder of some kind.

5) Hallucinogen Use Disorder: This covers drugs such as LSD, peyote and other hallucinogens. About 246,000 Americans have a hallucinogen use disorder.

6) Opioid Use Disorder: Again, this covers both illicit opioids and prescription opioids. In 2014, an estimated 1.9 million Americans had an opioid use disorder related to prescription pain relievers and 586,000 had a heroin use disorder (notice the SAMSHA numbers are somewhat different from what the NIH tells us).

But what exactly is Opioid Use Disorder?  Does it mean 2.5 million Americans are addicted to opioids?

No.

The diagnostic codes used to classify mental health disorders were revised in 2013 to cover a whole range of psychiatric symptoms and treatments. Two disorders – “Opioid Dependence” and “Opioid Abuse” -- were combined into one to give us “Opioid Use Disorder.” Few recognized at the time the significance of that change, it's impact on pain patients, or how it would be used to inflate the number of Americans needing addiction treatment.

Elizabeth Hartley, PhD, does a good job explaining what Opioid Use Disorder is in an article for verywell.

Hartley wrote that Opioid Use Disorder can be applied to anyone who uses opioid drugs (legal or illegal) and has at least two of the following symptoms in a 12 month period:

• Taking more opioids than intended
• Wanting or trying to control opioid use without success
• Spending a lot of time obtaining, taking or recovering from the effects of opioids
• Craving opioids
• Failing to carry out important roles at home, work or school because of opioid use
• Continuing to use opioids despite relationship or social problems
• Giving up or reducing other activities because of opioid use
• Using opioids even when it is unsafe
• Knowing that opioids are causing a physical or psychological problem, but using them  anyway
• Tolerance for opioids.
• Withdrawal symptoms when opioids are not taken.

The last two criteria will apply to almost every chronic pain patient on a prescription opioid regimen. So might some of the others. Most of us develop a tolerance for opioids, and if they are stopped or greatly reduced, we will experience withdrawal symptoms.  We simply cannot win for losing. 

If you learn your physician has diagnosed you with Opioid Use Disorder, be sure to ask them what criteria were used and why was it selected. Ask if you should see a doctor more knowledgeable about diagnostic codes and psychiatric disorders. 

Remember, knowledge is power. Take this information with you on your next visit to the doctor if you suspect you have been diagnosed with Opioid Use Disorder and your medications have been cut or reduced.

I hope what I have written helps you further understand exactly what we are facing and why. To be honest, it makes me want to wave the white flag, but I know that cannot happen.  We have to fight. Fight for proper care for a chronic disease or condition we didn't ask for or want. We can’t live the rest of our lives in severe, debilitating pain when effective treatment is available.  

Rochelle Odell lives in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

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.

Why I Keep a Pain Journal

By Barby Ingle, Columnist  

In 2002, I was in what was thought to be a minor car accident. After months of getting worse, noticing new symptoms and doctors telling me it was all in my head, I set out to find answers that made sense for what was happening to me. 

Many of the medical tests that were performed did not show any problems. Even so, my symptoms were still bad and getting worse. I started physical therapy about a month after the accident, which was excruciating and seemed to make things worse.

Flash forward three years, and I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and examine me.  The thought of being examined again by a new doctor was frightening. After an hour with me, the doctor said I might have Reflex Sympathetic Dystrophy (RSD), a painful neurological condition. A test later confirmed I had RSD -- as all my signs and symptoms had pointed to for all that time. 

After finding so little information out there about RSD and having so many doctors try to treat me who did not know about it, I realized that I was the one who had to teach my caretakers.

Many doctors who are not connected with a research hospital or university do not have the time to stay up-to-date with the latest information on RSD and other chronic illnesses. RSD does not always respond to treatments that relieve other types of chronic pain. Even among RSD patients, there are different responses to treatment.

The condition affects many aspects of the patient's life in varying degrees. For me, the simple things are the toughest. Activities of daily living, personal grooming, and my social and personal life have all been affected. I was not prepared for a catastrophic injury and lost my professional life during the bad days of RSD. I have had to adjust my daily routine because of the difficulty of performing simple tasks. 

I also learned to participate in very limited leisure activities, as I had to find my tolerance levels and work within them. I used to be very athletic, and loved hiking, biking and dancing. I constantly worked out and trained my body. Now I have a limited exercise regimen.

Because of my pain, falls and blackouts, as well as medication side effects, I am no longer able to drive. I need assistance with shopping, cooking, remembering things and traveling. I am in constant need of assistance, which makes traveling, social activities, personal care and holidays more complicated.

I have difficulty sleeping, lack energy and experience stress in my daily life. All of these help the cycle of pain continue.

Over time, I have found that pre-planning for daily events, activities and trips is not something I should do out of convenience; it is something I have to do to be able to function at even a basic capacity.

When I started a daily journal, I found that prayer, having a low-stress lifestyle, and staying hopeful keeps me in a positive place mentally. It also helps me keep my records organized, allowing for better healthcare. I have learned not to sweat the small stuff, to let go of troubles from the past, and look for ways to better my future. With a good team around you, the same is possible for you.

Like most chronic pain conditions, RSD is an invisible disability, which makes it harder for people to “see” your pain. People often have misconceptions about people with disabilities, so I disclose my condition to anyone who will listen, to let them know that RSD exists, and that early detection and proper treatment are important for RSD patients to have any chance of remission.

The more people I educate, the better the chances will be that someone else with RSD will have it easier. I know what I live, I journal it and I want to help others. Maybe a journal will help you.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.

Sessions Seeks to End Protection for Medical Marijuana

By Ellen Lenox Smith, Columnist

If you’re one of the millions of Americans who uses medical marijuana, you need to be aware of something going on in Congress that could affect your legal right to use cannabis.  

A few months ago, Attorney General Jeff Sessions wrote a letter to congressional leaders urging them to ditch an amendment that effectively prevents the Department of Justice from investigating or prosecuting cannabis users or sellers in states where medical marijuana is legal.

The Rohrabacher-Farr amendment first became law in 2014. It forbids the Justice Department from using any funds to prevent states from “implementing their own State laws that authorize the use, distribution, possession, or cultivation of medical marijuana.” Last year the Ninth Circuit Court of Appeals ruled that the provision protects marijuana growers, patients and dispensaries who are complying with medical marijuana laws in 29 states and the District of Columbia.

Those of us involved in our own state's medical marijuana programs felt safe and legally protected – until the Attorney General wrote his letter.

ATTORNEY GENERAL JEFF SESSIONS

Although the amendment has been attached to spending bills for years, Sessions wants to make sure it’s not in appropriations legislation for 2018. He stated in his letter that the court ruling gives dangerous criminals a loophole to protect themselves from prosecution. 

Sessions says the country is “in the midst of an historic drug epidemic and potentially long-term uptick in violent crime,” and the Justice Department “must be in a position to use all laws available to combat the transnational drug organizations and dangerous drug traffickers who threaten American lives.” 

Sessions appears to be deliberately equating medical marijuana use with the so-called opioid epidemic. But an emerging tide of research indicates otherwise. Opioid overdoses have actually declined in states where marijuana is legal and many pain patients prefer cannabis over opioid medication.

John Hudak of the Brookings Institution called Session’s letter a "scare tactic” that just might work. He told The Washington Post that Sessions "could appeal to rank-and-file members or to committee chairs in Congress in ways that could threaten the future of this Amendment."

So far Session’s arguments haven’t gained much traction in the U.S. Senate. In July, the Senate Appropriations Committee voted to keep the Rohrabacher–Farr  amendment in the appropriations bill for 2018.

“The federal government can't investigate everything and shouldn’t, and I don’t want them pursuing medical marijuana patients who are following state law,” Vermont Sen. Patrick Leahy (D) told The Hill. “We have more important things for the Department of Justice to do than tracking down doctors or epileptics using medical marijuana legally in their state."

But the Senate and House must work out a compromise, and it’s unclear how the House will vote. Last month the House Committee on Rules voted to remove the amendment from the House appropriations bill after Republican leaders said it was too “divisive.”

In the past, there has been broad bipartisan support for the amendment in Congress. One of its sponsors, California Rep. Dana Rohrabacher, is a conservative Republican who has long supported marijuana legalization. Without his amendment, Rohrabacher says Congress would be undermining the rights of states to make their own laws.

“The status quo for four years has been the federal government will not interfere because the Department of Justice is not permitted to use its resources to supersede a state that has legalized the medical use of marijuana,” Rohrabacher told his colleagues.

Many Americans agree. Support for medical marijuana is at an all-time high, reaching as much as 94 percent in one poll. 

Where do you stand? Where does your congressman? Should medical marijuana be protected from federal prosecution in states where it is legal?

I, for one, depend on cannabis for life. And will do all I can to let my voice be heard.

Ellen Lenox Smith lives with Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart 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.

What Are the Odds of Failing a Drug Test?

By Roger Chriss, Columnist

What are the odds that a person who tests positive for an illicit drug is actually using that drug?

That is a vital question in pain management and the opioid crisis, because millions of pain patients undergo drug tests regularly and some are falsely accused of failing them. The answer is not just a matter of looking at the accuracy of the test.

In a simple situation, like a toss of a coin or a roll of a die, computing the probability of an outcome is elementary. Most people realize that a toss of a coin has an equal chance of coming up heads or tails.

But drug testing is not as simple. It is an example of conditional probability. A drug test that is 95% accurate will not find drug users 95% of the time. That is because the test is applied to both drug users and non-users. We have to use a calculation known as Bayes’ Theorem to determine the real probabilities.

Bayes’ Theorem calculates the probability of one event happening given that another event has already happened. In terms of drug testing, this means the probability that a randomly selected person who has a positive test did in fact use that drug.

To perform the calculations, we need to know two things:

1. The accuracy of the drug test
2. The “base rate” at which drug use occurs in the population at large.

The accuracy of drug tests varies widely. A 2010 study estimated that drug tests generally produce false-positive results in 5% to 10% of cases and false negatives in 10% to 15% of cases.

Data on the base rate of drug use also varies. The CDC claims as many as 25% of chronic pain patients develop signs of opioid use disorder. However, a Cochrane review found addiction in less than 2% of long-term opioid users.

This gives us four general scenarios to consider when estimating the probability that a chronic pain patient with a positive test result is actually misusing opioids:

Scenario I (25% base rate; 95% accurate drug test):  90%
Scenario II (25% base rate; 90% accurate drug test): 83%
Scenario III (2% base rate; 95% accurate drug test):  29%
Scenario IV (2% base rate; 90% accurate drug test):  17%

With a high base rate of opioid misuse and a more accurate test, the probability is high at 90 percent. On the other hand, as the base rate falls and test accuracy decreases, the probability drops significantly, down to 17 percent. This means that the probability of a person getting a false positive result increases.

The Base Rate Fallacy

Bayes’ Theorem clearly shows that the base rate of drug use has a large effect on the probability that a person will get a false test result. Because clinical decisions and healthcare policy are often based on the results of such tests, knowing the probabilities is vitally important.

The base rate fallacy occurs when a decision is made without taking the real base rate into consideration. As shown above, the upper value of 25% is more than 10 times the lower value of 2 percent, indicating a high degree of uncertainty in the base rate.

Moreover, the base rate is not the same in all locations or across all populations. Drug abuse is known to be higher in some places and among some age groups. The accuracy of drug tests also represents an average, but factors such as biochemical individuality and testing conditions may influence actual performance.

Further, drug testing is not an entirely random process. For instance, prior to prescribing opioid medication, a doctor may perform a risk assessment using an Opioid Risk Tool. A doctor may also have hints that a patient is abusing opioids to motivate testing. In either case, randomness is lost and the base rate shifts.

Conditional probability produces counter-intuitive results, with a high degree of dependence on the base rate -- itself a number that requires constant attention.

The bottom line is that drug testing alone is not foolproof. Clinical judgment by experienced physicians, combined with information such as pharmacy data, pill counts and medical records, will always get better odds than drug testing alone.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

A Pained Life: It Never Hurts to Ask

By Carol Levy, Columnist

Recently a documentary was released on Netflix about Lady Gaga.  A part of her story is that she has fibromyalgia. 

I have not seen the film, but understand she devotes a little time to detailing and showing how she deals with chronic pain, both physicially and emotionally. Articles and posts abound in chronic pain social media about the film and Lady Gaga's pain.

The odd thing is many of the writers start by complaining that people don’t understand their pain, why they have to take drugs, and why they can't do many things that seem so easy to everyone else. 

Then, strangely, they do exactly what they complain happens to them.  They express doubts about Lady Gaga’s diagnosis, wonder if she is malingering, and say she can't really have fibro because her level of suffering and disability is not the same as theirs.

It seems we in the chronic pain community want to have our cake and eat it, too.  We want to have the discussion about chronic pain made public. We want awareness. But the awareness has to be exactly the way we want it or we don't want it at all

SCENE FROM "GAGA: FIVE FOOT TWO"

Many in the pain community express feelings that anything in the public eye that even hints of chronic pain should be about the person's struggles and life interruptions caused by pain.  Lady Gaga is a case in point. 

“She didn’t talk enough about fibro,” writes one person, others echoing the sentiment. “I thought from all the hype I heard it was going to be about that.” 

It would have been terrific if Lady Gaga had devoted more time to her disease and its effects on her life, but then that really was not the point of the documentary.

“Some of the film may actually be hurtful to some of us, as it shows her being able to do very physical things that are often beyond many of us as we struggle with the pain. If you have watched her perform she is not a sedentary singer,” wrote one poster on social media.  

Maybe it is worth asking her. Could you do something more, maybe another film or even just a commercial, that would bring needed attention to chronic pain and its effects on our lives?  

Last month was Pain Awareness Month, and it went by with almost no awareness or notice at all.  Lady Gaga might be the awareness hook that we need.

But we need to stop lamenting, hoping and complaining that no one is doing enough.  It is past time to take the bull by the horns.  We have to do it ourselves.  As they say, if not now, when? If not us, who?

And who knows? If someone or a bunch of someones ask Lady Gaga or another celebrity to be our voice, they might actually respond. If we don't ask, we’ll never know if they want to help the pain community.

The worst they can say is no.  And maybe, just maybe, we can get a “Yes.”

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.

How the FDA Can Help Solve the Overdose Crisis

By A. Rahman Ford, Columnist

As the U.S. Food and Drug Administration prepares to issue new guidelines on stem cell therapy, it must give due consideration to the ever-increasing number of Americans who suffer from intolerable chronic pain.

According to the National Institutes of Health, over 25 million American adults suffer from chronic pain and nearly 40 million have severe levels of pain.  To alleviate that pain, many turn to addictive opioid medications, sometimes with deadly consequences. 

Under former FDA Commissioner Robert Califf, the agency took several steps to reduce opioid addiction, including improved warning labels, enhanced education for prescribers, and the development of abuse-deterrent drug formulations. 

Unfortunately, those initiatives have had negligible success in stemming the tide of opioid overdose, perhaps because, as Califf himself put it, “financial incentives in the (pharmaceutical) industry can lead to a focus on short-term profits instead of patient well-being.”

Indeed, although opioid addiction has seeped into the public consciousness and ascended to the top of many politicians’ agendas, the attention has been largely rhetorical -- practical, immediate-term solutions to the overdose crisis remain few and far between.  Clearly, new approaches are needed. 

Stem cell therapy can be a meaningful intervention in the effort to eradicate chronic pain and end opioid deaths.  The fact is that many physicians are already using stem cells to treat chronic pain safely and effectively, and have been doing so for years. 

Stem cell therapy can be a meaningful intervention in the effort to eradicate chronic pain and end opioid deaths.  The fact is that many physicians are already using stem cells to treat chronic pain safely and effectively, and have been doing so for years.  But with the issuance of new guidelines, which are expected this fall, the FDA could very well limit access to stem cell therapy, even to stem cells that come from our own bodies. 

Current FDA Commissioner Scott Gottlieb recently said stem cells hold “significant promise for transformative and potentially curative treatments,” but some unscrupulous stem cell clinics were preying on sick people desperate to find cures. While cracking down on these bad actors, Gottlieb must not lose sight of the fact that stem cell therapy is a potential solution to everyday Americans’ chronic pain.

Science Supports Stem Cells for Pain

Let’s take a brief look at some of the recent scientific literature about stem cell therapy, and how it can attenuate or even eliminate the chronic pain that results from a myriad of medical conditions. 

A 2014 study in the Journal of Pain Research made the case for the use of adult stem cells to treat neuropathic pain.  Due to the "scarce response to the conventional analgesic therapy,” the authors said it was “mandatory to identify and propose novel approaches" to neuropathic pain. They noted the “fast onset and long-lasting effect on pain relief that one injection (of stem cells) could provide,” an outcome far superior to drugs which require chronic administration, have side effects, and require periodic dose increases.

That same year, an editorial in the British Journal of Medical Practitioners entitled “Stem Cell Therapy: The Future of Pain Medicine” claimed that “recent advancements for SCT (stem cell therapy) for pain due to degenerative diseases in the spine and joints are promising and indicative that SCT will undoubtedly play a major role in the future.” 

A 2015 review in the World Journal of Stem Cells examined the plausibility of using stem cells to treat acute, chronic and neuropathic musculoskeletal pain, concluding that stem cells “show promise for several chronic non-life-threatening yet disabling conditions.”

Just this year, in a review published in Frontiers in Immunology, researchers said stem cells derived from a patient’s bone marrow “may provide efficient, long-term, and safe therapy for patients with painful diseases” such as osteoarthritis, degenerative disc injuries, inflammatory bowel disease, neuropathic pain, and pain associated with cancer and radiotherapy.

Stem cells can alleviate pain in a myriad of ways.  A recent study published in Military Medicine found that a low-dose stem cell injection significantly attenuated neuropathic pain in injured rats, regardless of whether the cells were derived from bone marrow or adipose (fatty) tissue.  The authors concluded that the therapy “has great potential to emerge as an innovative, safe, efficacious, and cost-effective therapy for the treatment [of] neuropathic pain or other chronic pain conditions.”

A 2016 study published in International Orthopaedics followed 26 patients who suffered from chronic discogenic lower back pain who were injected with their own bone marrow concentrate.  All 26 patients had a significant decline in their pain and disability scores, and were able to avoid surgery. 

Stem Cells Can be a Remarkable Solution

As the above sampling of literature suggests, stem cells can treat chronic pain caused by several illnesses.  It is important to note that no subjects in any of the referenced studies experienced significant adverse effects.  Safety was simply not an issue.  The results regarding the use of autologous stem cells – a patient’s own stem cells -- are especially noteworthy because, so long as the cells are “minimally manipulated,” under current FDA regulations approval is not required.

If this were to change due or be restricted under new FDA guidelines, many patients would be left with no viable pain treatment options.  Let us not forget that former Texas governor and current Secretary of Energy Rick Perry once suffered from chronic back pain, and found no answer in surgery or pills.  Perry found relief in his own stem cells.  All of us deserve that chance.

On June 13 of this year, Commissioner Gottlieb made it clear that “everyone at the FDA is committed to focusing on all aspects of the [opioid] epidemic” and promised to seek input from the public “to share additional steps and information that the FDA should consider in addressing these challenges.” 

Commissioner Gottlieb, a growing number of Americans like Secretary Perry are already using stem cells to solve problems that current treatment modalities have failed to cure.  They're traveling to clinics at home and abroad because their pain is disabling and insufferable. 

Commissioner Gottlieb, by adopting a forward-thinking policy on stem cell therapy – specifically autologous stem cell therapy – you can fulfill your promise to the American people.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor in Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China.  

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.