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.

Painful Opioid Statistics

By Roger Chriss, Columnist

The opioid crisis continues to worsen, and media coverage continues to be overly simplistic.

Vox recently reported the U.S. “absolutely dwarfs” all other countries in opioid prescriptions, in a story headlined “America’s huge problem with opioid prescribing, in one quote.”

"Consider the amount of standard daily doses of opioids consumed in Japan. And then double it. And then double it again. And then double it again. And then double it again. And then double it a fifth time. That would make Japan No. 2 in the world, behind the United States," Stanford psychiatry professor Keith Humphreys told Vox.

Although Humphreys’ statement is accurate, it is a misleading oversimplification that omits important context, including the rising rate of heroin and fentanyl-related deaths, and the shifting landscape of opioid prescribing.

First, this statistic represents an average (or mean). It does not include the variance, a measure of how many people use what quantity of opioids. The average person in the U.S. does not use any opioids at all. But people suffering from opioid addiction may use a large quantity of opioids every single day of the year.

In statistical work, reporting an average without the variance is considered sloppy at best, misleading or manipulative at worst.

Humphreys’ statement also fails to distinguish between the legal and illegal use of “pharmaceutical opioids,” a convenient term to refer to legally manufactured opioids, regardless of whether they are used for valid medical purposes, or diverted, shared or sold.

In other words, the much higher number of pharmaceutical opioids in the U.S. compared to Japan reflects both medical use and misuse.  

Further, this statistic assumes that Japan’s level of pharmaceutical opioid consumption is somehow better. In fact, Japan has a well-documented history of undertreating pain because of fears about opioid addiction. Pain is so poorly treated in Japan, according to The New York Times, that the government launched a campaign in 2007 urging patients to request pain relief, with hospital posters urging patients to “Tell Us About Your Pain.”

Japan continues to struggle with high levels of chronic pain. A 2015 review found a “high prevalence and severity of chronic pain, associated factors, and significant impact on quality of life in the adult Japanese population."

The Vox article also fails to point out that opioid prescribing in the U.S. peaked in 2010 and has been declining ever since. Yet opioid addiction and overdose deaths have been steadily rising, fueled largely by illegal opioids such as heroin and illicit fentanyl.

Vox is not alone in oversimplifying a complex problem. CNBC, for example, reported last year that “80 percent of the global opioid supply is consumed in the United States.”

Many others have repeated that claim, including Missouri Sen. Claire McCaskill, who recently tweeted that, "We have 5% of world population. 80% of opioids."

PolitiFact ran a fact check on McCaskill’s numbers and found them “greatly exaggerated.”

“While the United States is clearly the largest consumer of opioids, it, at most, accounts for roughly 30 percent of global consumption. We rate McCaskill’s claim False," PolitiFact said.

This is a significant issue in the opioid crisis. While some journalists, politicians, and even physicians name villains, people suffering from opioid addiction continue to get substandard treatment. And people who benefit from opioid therapy are struggling more and more to find physicians willing to prescribe and pharmacies willing to fill opioid prescriptions so they can have a reasonable quality of life.

No one is suggesting that the U.S. needs more opioids, particularly in the acute care setting. Opioids should be prescribed with close monitoring by physicians with experience in pain management. The research literature and public health studies agree that over-prescribing occurred, especially in pill mills and dubious pain clinics. In addition, drug theft and diversion are huge problems.

So while a statistic that invokes multiple doublings for comparative purposes sounds impressive, its context is much more important. We need to focus on the crisis as it really is, without exaggeration, if we hope to have meaningful progress ending it.

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.

Chronic Pain in the Workplace

By Lana Barhum, Columnist

Unless you have lived with chronic pain, you cannot begin to fathom the physical and psychological torture many people in pain go through.  Chronic pain is an issue so often ignored in the workplace.

About a year ago, I wrote an article about “presenteeism,” which basically is the act of attending work while you are sick.  But presenteeism isn’t just showing up for work when you have a cold or the sniffles, it is showing up to work every day despite pain, fatigue and other symptoms that come with chronic pain and illness.

Presenteeism was recently researched by the Global Corporate Challenge (GCC), which found that while employees with chronic health conditions took an average of just four sick days a year, they confessed to being unproductive at work an average of 57.5 days a year.

The GCC report estimated that the cost of presenteeism was 10 times higher than absenteeism. Absent workers cost employers in the United States, United Kingdom and Australia about $150 billion a year, but those who came to work and were not fully productive cost them $1,500 billion.

The study’s authors noted the importance of companies to improve productivity by putting their focus on reducing presenteeism.

I am not sure employers know or even care how many of their people are dealing with chronic pain challenges.  And if they do, what expectations do they have of these employees? Do they even understand the difficulties of being productive when you are physically hurting?

Chronic Pain and Lost Productivity

According to another report from the Institute of Medicine Committee on Advancing Pain Research, Care and Education, chronic pain is costing the U.S. economy between $560 to $635 billion annually in healthcare costs and lost productivity. While many employees who live with pain continue to work, they struggle to be productive. 

One possible solution – opioid pain medication – is no longer easily accessible, even for pain patients who don’t misuse prescription drugs and who want to have normal, productive lives.

Research has shown that about two million Americans misuse opioids, and a good chunk of them wind up in emergency rooms. But that statistic ignores the millions of people that need pain medications and don’t abuse them.

Too many prescribing guidelines -- and fear of DEA oversight -- keep our doctors from writing prescriptions for pain medication, even for medicines that are relatively safe and have low risk of addiction.  Guidelines and insurance reimbursement policies have basically taken discretion away from responsible doctors in managing patient pain care.

Some chronic pain sufferers won’t even ask their doctors about pain medication because of the stigma attached to opioid misuse and abuse. Up until recently, I was one of them. I wouldn’t ask my doctor for medication to manage my pain because of that very stigma.  But my pain levels got so bad I had no other choice.  And my doctor, like so many others, was wary of writing a prescription and didn’t give in until I was practically begging. She explained she trusted my judgment, but was limited in her options due to government guidelines.

Working with Pain

The biggest concern I have on an almost a daily basis is how long I will be able to continue working. Will my boss get tired of the mistakes I make on the days I am hurting and my focus is off due to pain and lack of sleep? While my employers know I live with pain from rheumatoid arthritis and fibromyalgia, they really don’t care – most likely because my disability is invisible, but also because it isn’t their problem – it is mine.  

I am not sure most employers or coworkers understand the overwhelming and difficult responsibility of holding down a full-time job when you live with chronic pain.  Even if your employer provides accommodations – like workspace adjustments and options to work from home on occasion – the basic requirements of the job can still be great when you are hurting.

In an ideal world, employers would offer options for pain management on the job -- in the form of wellness programs and workplace accommodations – so we could work at full capacity.  Employees who feel supported will seek out all available help, feel better, and function better on the job. 

But most employers have yet to recognize the crucial role they play in helping to manage the pain epidemic in this country.  They see chronic pain as a personal problem, rather than a business dilemma.   Until that changes, we are on our own to suffer in silence and figure out how to work better, despite the pain that we endure. 

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother who lives with rheumatoid arthritis and fibromyalgia. 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.

Don't Forget Chronic Pain Patients During Disasters

By Janice Reynolds, Guest Columnist

With the recent hurricanes in Florida and Texas, there was an Associated Press story you may have seen. 

Titled “Hurricanes Drive Addiction Issues into Public Square,” it dealt with the plight of people addicted to alcohol, tobacco, pills or heroin when disaster strikes.  While the article was not the “yellow press” we often see in the coverage of opioid medication, it did err by the sin of omission.

People with all sorts of health problems suffer during a natural disaster. Not only did the AP story not mention this, I didn’t see it covered elsewhere in the national news.

People living with pain are likely to be the ultimate casualties.  Anxiety and stress increases pain levels, and some pain sufferers will be difficult to evacuate. 

Most critical is the loss of treatment.  If a patient is taking opioids as part of their pain plan, they may not be able to take their medication with them (when leaving in a hurry) and getting a new prescription or even someone willing to fill it would likely be impossible. 

In a shelter, theft would be a worry.  This applies to non-opioid medication as well.  Non-pharmaceutical interventions might also be unavailable.  If pain was already poorly managed -- as it often is -- it would be even worse.

As we know, pain has many harmful side effects that lead to other health emergencies, including suicide. People in pain during a disaster are going to be even more vulnerable than usual.

a hurricane harvey evacuee (texas national guard photo)

All chronic health problems are affected by natural disasters.  In the aftermath of Hurricane Katrina in 2005, thousands of cancer patients had their treatment disrupted.  Records were lost and many did not know their treatment protocol or where they were in it.  Some did not even know the type of cancer they had.

Of course, medication for other conditions was lost as well. People living with heart conditions, diabetes, kidney failure, AIDS, high blood pressure, COPD, multiple sclerosis, Alzheimer’s and many other chronic health issues need special medications or treatments. For many, pain is a part of their disease as well.

Patients in hospice or nursing homes are especially vulnerable. Eight elderly nursing home residents in Florida died this week in sweltering heat when the facility they were in lost its air conditioning during Hurricane Irma.

The media has an ethical obligation to address the problems of natural disasters related to chronic health problems, especially for chronic pain, and not just limit their concern to addicts.  It is the right thing to do.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country on pain management and co-authored several articles in medical journals. Janice lives with persistent post craniotomy pain and is active with The Pain Community.

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.

Living With an Invisible Monster

By Marcie Ann Dillard, Guest Columnist

I live with an invisible monster that consumes both body and mind. A monster that steals the ability of children, mothers, fathers and grandparents to sit, stand or walk. A monster that consumes finances, destroys friendships, marriages and families.

I say invisible monster because when I speak these three letters -- RSD --- which stand for Reflex Sympathetic Dystrophy, I am faced with the blank stares of the ignorant.

What is such a thing I myself in 47 years of living had never heard of? How could I have not known of this monster that stalks me like a crouching lioness after a simple leg fracture?

She pounced suddenly and fiercely, feeling her teeth, her bite sink into my body, setting my flesh on fire in moments. Now in the grasp of a beast that respects no one, she sinks her claws deeper. Her death grip no one will ever escape.

Going from doctor to doctor, I can feel her but she goes unseen even after dozens of MRIs, CT scans and x-rays. The searing unseen pain forces me to look for freedom from what I now understand to be the most painful disease known to man.

I begged for those sworn to help me to release me from her grasp, but ignorance -- mine and theirs -- gave her time to continue her devastation.

I marched through this life boldly; a mother, wife and business owner, never giving a thought to the day that would end. Then that day came. The only evidence often of her existence was the life stealing pain, and the integrity of my words lost among strangers.

The skeptical looks of the medical community as I once again describe the effect her grasp has on my body.

Through the tears of pain and hopelessness, the joy of living is veiled in agony. The blank stares of loved ones when I choose to be honest about what I daily experience. Self-confidence fades, the beat of the drum I confidently marched to become unclear, self-worth gone, as one by one the things that made me Marcie Ann become painfully impossible feats.

She never stops chewing my flesh, the nerve twitches and the muscle spasms a constant reminder that I remain helpless prey to a ruthless predator.

If I spoke these six letters -- CANCER -- I would be met with the sympathy of the community. Not to offend those who suffer from that monster or have suffered a loss to it, but perhaps someone would run a marathon in my honor or host a fundraiser to help me secure lifesaving treatment.

If I said it was a terminal illness there would be no misunderstanding of the impending outcome. But with chronic, progressive and incurable pain, the well of sympathy quickly dries.

Silent suffering.

In this lifetime, the lioness will never deliver her final blow and end my suffering .

Marcie Ann Dillard lives in Washington state. She was diagnosed with Reflex Sympathetic Dystrophy in 2012, two years after her symptoms began.

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.

Learning How to Live with Chronic Pain

By Barby Ingle, Columnist

When I became so debilitated by chronic pain and doctors could not figure out what was going on, I could no longer hold my life together. It was a minor auto accident that triggered crazy symptoms that didn’t make sense to me or my doctors.

When the first symptoms of Reflex Sympathetic Dystrophy (RSD) began, I thought I was being ridiculous. The pain was overwhelming. It took all of my attention and energy just to be able to focus. It felt a burning fire in my face, neck and shoulder, and my skin became discolored. I also started having balance issues and falling.

I remember at a practice I was working with a male cheerleader and we did a stunt. Everyone around us was yelling, “Coach, stand up straight. What are you doing?”

I kept saying I was straight, but then I looked down. I didn’t even know how he was holding me up in the air. I was in the weirdest position; legs bent, leaning forward, arms not in the right place. Until I saw what my body was doing I had no idea what everyone was so upset about. 

I was coaching, heading to counseling appointments, chiropractors and neurologists, and sleeping in my office or wherever I could find a place to sleep. It wasn’t solid sleep. It was for 20 to 45 minutes at a time. I was overwhelmed physically and emotionally, not being able to coach like I wanted, but still trying not to let my team members down.

I wish I could go back and help them understand what I was going through. I wish I had let go of my job sooner so that they could have had a better year. I didn’t know that what I was dealing with was not going to be as easily overcome as endometriosis was. That was a struggle that made me believe everything was just a challenge that I could get past. Not this time. It was going to take years, financial strain, and learning new life skills. I just didn’t know it. 

I was no longer able to handle my dream job of coaching cheer and dance at a Division I-A university. My business started to crumble and eventually closed. My husband stopped supporting me emotionally and physically. I didn’t have the energy to take care of me and him any longer. One good thing that came from it was that after our separation he found God, and was baptized into the Catholic Church the next Easter.

The biggest reason our marriage fell apart was he had me feeling that it was all in my head, and tried to convince my family and our friends of the same. My psychologist and psychiatrist both told me he was wrong. What I had was situational depression and they assured me what I was going through was normal. They had faith in me and helped me get faith back in myself. 

We began marriage counseling before the accident because of our struggling relationship, but that was no longer an issue because the relationship was over. We were divorced within 3 months of filing for separation. Now I needed help getting my new life in order and to continue counseling, until I felt I had the life tools I needed to be the best me I could be.  

I rated the physical pain I had from the accident in the beginning as a level ten. I did not think I could take anything worse. But as each surgery or procedure was performed and the pain only worsened, I wanted sometimes to have that first pain back.

As our bodies get “used to the pain,” it sometimes gets easier to manage and deal with. With each additional trauma and spread of RSD, the pain I thought was unbearable becomes a livable level. But I wasn’t living.

“Reflex” is any process in your body that automatically goes haywire. “Sympathetic” is your sympathetic nervous system, which makes you feel like you are on fire and you can’t put it out. “Dystrophy” is the loss of muscle and bone, which left me in a wheelchair for many years.

As an athlete, it was difficult to understand how working out and pushing myself were making me worse, but it was. Pushing myself too far taught me that it can cause damage. I realized that doing this was creating further damage to my body and pain pathways. I learned that trying smarter is more important than trying harder.

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.